Dear Friends,
I am sorry for not providing an update over the past weeks. A number of things have happened, but I have not felt very inspired in writing blogs due to various feelings. There is the feeling of waiting again (as always) and some degree of feeling uncertain about the realistic possibility of this treatment improving my health. These uncertainties, or doubts, have made it difficult to know how to proceed, emotionally. On the one hand, there is reason to have hope for a remission period; but on the other hand I do not want to again go through a great disappointment if this treatment stops working. I have already gone through the difficult emotions of cancer twice (my first diagnosis, and the my second diagnosis of spread), and feel the need to prepare emotionally for what may be inevitable. I have talked to my wife about whether to plan now for details of how to handle my passing; but it is hard to know how to balance these types of discussions with the need to continue being hopeful. My father has a habit of never worrying about things he cannot control. If only we could all do the same so easily.
Some of the medical events since my last blog:
-- My father and I made a trip to Mayo Clinic about one week after my surgery, and had the drainage tube removed. The drainage was so little that my body should be able to reabsorb whatever continues after removal of the drain. This is in theory, but my hematoma was chronic and I expect it to continue oozing (sorry for the graphic description).
-- One week after having the tube removed, Usha and I (along with our youngest son, as well as Usha's sister and niece) made the drive to Mayo Clinic for my second treatment. We only had to do a blood test and echo cardiogram (as part of the study requirement). For the most part, things were fine; and I took a second dose of the experimental drug. The only changes in my blood profile were related to kidney function, and it appears that this drug was having some effect on this organ which needs watching as we proceed.
-- I find that one day after my treatments, I get a rush of energy. Then in the days after this, I lose energy and need to ensure alot of sleep and good nutrition. It has now been 5 days since my treatment, and I still have feelings of tiredness. If it is like my last round, this will continue for another week, or so.
-- It has been 3 weeks since my liposuction surgery. I still have considerable pain in the nerves and muscles surrounding the site, which gets worse when I wrap the site too tightly. But there is also a degree of swelling again occurring in the hematoma site; so it is still a learning process to know how to wrap this in order to encourage absorption at the site, but yet not causing undue pain and preventing healing. My pain control drug options are not the best right now (I can only use Tylenol, which doesn't work well for me and doesn't control the muscle inflammation). I have started trying a topical ointment to numb the area so it can relax and heal faster. If anyone has better advice, let me know.
On a more personal side, my sons have now started school here. Brian is attending the Univ. of Illinois, and has moved into a dormitory. He is also working part time at the University tennis training center. So far he is very happy being a college student. Ben has just started high school today (9th grade). He is understandably nervous, but hopefully things will sort out over the next week. He is also taking piano lessons on a regular basis from a great instructor (something he could not do in India). Usha is looking at some consulting options to keep busy, and I am considering getting office space at the University to have a place to go when reading and writing. This could provide an outlet for my time, on the days when I am up to getting out of the house.
Peace to Everyone,
BRENT
Wednesday, August 29, 2007
Thursday, August 9, 2007
Leg Surgery Finished - At Last
Yesterday (August 8, 2007) I underwent liposuction surgery on the "lump" in my left leg. This turned out to be a large hematoma (accumulation of blood in an area just below the original tumor & surgical site). It seems that this area of my leg always had some level of swelling from the time of the first surgery, and perhaps there was a small hematoma from the beginning which then accumulated much more fluid when the chemotherapy drugs where changed (second type of chemo tended to cause fluids to cross membranes more easily). Apparently, this type of problem is fairly common with radical leg surgery. Such surgery tends to leave slight openings in surrounding tissue, which will fill up with something (either fat deposits, serum, or blood). It is probably for the best, to finally clean this up.
Today, a post-operative evaluation by the surgeon was positive, with instruction on how to care for the wound area. The leg will be kept wrapped for the next few weeks, with a drainage tube in place to ensure all fluids are removed. The key is to keep it drained, and encouarge the surrounding mucles to adhere and close the opening permanently.
As always, being a cancer patient leaves some area of uncertainty. My surgeon also removed a small, thin, 'leaf-like' structure from the hematoma. It was not a tumor, and only a few cells thick; but was sent for pathology evaluation and are likely sarcoma cells. The main issue for us to deal with now is arrest nodule growth in the lungs, and any drug strategy which would do this will also take care of cells in other parts of the body. So the main issue with my leg is to simply get the area completely drained and healed. I hope to go on long walks again after a few weeks.
BRENT
Today, a post-operative evaluation by the surgeon was positive, with instruction on how to care for the wound area. The leg will be kept wrapped for the next few weeks, with a drainage tube in place to ensure all fluids are removed. The key is to keep it drained, and encouarge the surrounding mucles to adhere and close the opening permanently.
As always, being a cancer patient leaves some area of uncertainty. My surgeon also removed a small, thin, 'leaf-like' structure from the hematoma. It was not a tumor, and only a few cells thick; but was sent for pathology evaluation and are likely sarcoma cells. The main issue for us to deal with now is arrest nodule growth in the lungs, and any drug strategy which would do this will also take care of cells in other parts of the body. So the main issue with my leg is to simply get the area completely drained and healed. I hope to go on long walks again after a few weeks.
BRENT
Monday, August 6, 2007
A New Treatment, A New Day
Dear Friends,
I feel the need to share happenings of my first week at Mayo Clinic; both what happened and my thoughts / emotions of the experience. I hope this will help everyone to understand where things stand now. We arrived in Rochester, Minnesota, about 4 days early. The reason was to just be available around Mayo Clinic and associated hospitals, in case anything were to develop that needed attention. The main goal is to get into the experimental drug trial, and not let these side issues continue to cause delay. We have realized that my best hope is to be a patient at Mayo Clinic, and to take this new drug; so it is best to let doctors at Mayo handle any side issues (such as lung and leg problems which had developed over the previous month). I have been off chemotherapy treatment for about 6 weeks, so it was critical that this new experimental drug be administered into my blood stream as soon as possible. My tests, consultations and treatment where scheduled to run from August 1st to August 3rd.
Wednesday August 1, 2007 : This was a very difficult day for me; both physically and emotionally. Mayo Clinic is an extremely large and beautiful facility. It is 10 stories high, and runs continuously for 4 city blocks with walk ways under the streets. Due to my leg pain, and general health after chemo applications, I was physically tired even before the day started. I was taken through 7 different tests, including scans of my lungs (CT) and my leg (MRI); as well as heart tests. This was physically exhausting (7:00 AM to 4:00 PM); but I was also mentally and emotionally very tense and anxious. What would the tests show ? particularly the leg MRI ? .... Would I really qualify for the trial ? or would something again come in the way ? Also, upon reflection, I realized the cause of being emotionally tense; my last experience in a large medical clinic was New York in May, when my previous oncologist informed of lung metastasis and left us with little or no hope for the future. This experience was like a deep open wound which never healed; all of those feelings of helplessness, hopelessness and desperation came rushing back. On this first day at Mayo Clinic we did not see a doctor, just the medical staff administering the tests; so it was easy to let one's mind drift to negative thoughts. On the positive side, I can attest that Mayo Clinic is a much better facility than any I have seen before, with a very efficient system of handling patients and very knowledgeable / kind hearted professional staff.
Thursday August 2, 2007 : The day after so many tests, we then met with a new oncologist and experimental drug trial coordinator. These meetings were more encouraging; essentially my new oncologist has similar expertise as the doctor in NY, but with a somewhat better interactive manner (as least I felt more encouraged in talking with him). There were still a couple of points of uncertainty; one being about my true cancer cell type and the other about whether my leg needed surgery and how this would impact my ability to participate in the new drug trial. Based on the lung biopsy slides we brought from our local hospital, the Mayo pathologists could not confirm whether I had rhabdomyo sarcoma or just a generalized sarcoma. To gain entry into this trial, I had to have the rhabdo type; so the oncologist decided to go with the original pathology report from the cancer center in NY (Memorial Sloan Kettering - MSKCC) based on the actual tumor removed from my leg in August 2006, which indicated a rhabdo cell type. MSKCC has a high degree of credibility in sarcoma diagnosis and surgery, due to decades of experience; so it is likely that this original diagnosis was correct and the recurrence in my lungs is also the same cell type. The Mayo Clinic oncologist did indicate that either way, this new drug treatment is the best option going forward and can replace chemotherapy as a first line treatment option for sarcoma.
The second concern was what the Mayo surgeon would say about treating my leg. I was scheduled to consult with this surgeon a few hours after seeing the oncologist, and my ability to participate in the drug trial would depend on not having surgery. Fortunately, the MRI report on my leg showed a fluid sac, and not a tumor. During consultation with the Mayo surgeon, my oncologist also came to plead my case with the surgeon and ensure that no surgery was recommended. Instead I was given an appointment with a liposuction surgeon next week to look at options for draining the fluid in a non-invasive manner. Finally, at the end of my meeting with the surgeon, he informed me that this type of fluid accumulation is common with radical leg surgery (such as I had) and my situation was not threatening to the leg function and therefore not urgent; just keep it wrapped until it can be drained. We then had a visit (same room as surgical consultation) from the experimental drug trial coordinator and trial nurse, to finalize my paperwork for participation in the trial and discuss taking first round drug treatment the next morning. This was the most impressive aspect of our time at Mayo Clinic; the absolute coordination between various specialists to focus on needs and convenience of the patient. It also seemed that the trial group and my oncologist were all keen to have me get into the trial, because it could help my condition (although being a rare case was also useful).
Finally, some interesting information about this drug trial. Apparently this new drug has been administered to a number of cancer patients previously with different cancer types; but the trial for sarcomas is somewhat new. With other cancer types, this drug is mixed with chemotherapy, while with sarcomas it is administered as a stand alone therapy. There are three types of sarcomas being admitted into this trial, but I am the only representative with my cell type (rare condition in adults). I also received the last opening into the trial; so this has been fortunate on two fronts. Receiving the last opening into the trial is fortunate in and of itself (just in time), but also being at the end means that an effective and safe dosage has already been worked out (I am administered a high dosage in the first treatment itself).
Friday August 3rd, 2007 : On this day, I actually received the new experimental drug through IV drip, which lasted for 5 hours. This was much easier and safer than chemotherapy I had been taking. Since this drug is an antibody, there is always concern for allergic reaction; so I was watched closely for the first hour or so. But nothing negative happened and the application went smoothly. The treatment rooms at Mayo Clinic are very nice; private rooms with good facilities for relaxation during the process. Since this is part of a research trial, blood was drawn before the application and spun in a mobile centrifuge in the room itself, to separate out the serum fraction for analysis. I also need to provide blood samples on days 2, 4, 8, 15, and finally 21, after the treatment. Each cycle of drug application is 3 weeks, so in this way it is like chemotherapy. However, side effects for this drug, as seen in patients to date, are very minimal; possibly a bit of tiredness and some symptoms of a common cold (stuffed nose, etc.).
The theory of this antibody is to block nutrient supply to cancer cells, through binding to receptors on the cells which are needed to capture sugar sources from the blood stream. In cell culture studies done prior to the patient trials, this drug has shown strong promise in cells similar to my rare type. So now we will find out how it works in my body. It is clear that traditional chemotherapy will not remove the cancer from my system, but only hold it in check on a short-term basis with great damage to my normal cells. This new antibody drug provides a chance to destroy the cancer cells, or at least to also hold them in check without such damage to the body compared to chemotherapy. We are praying for the best, and hoping that I can take this drug with good effect for a long time.
Monday August 6, 2007 : As I write this note, I am pleased that no noticeable side effects from my treatment have come. In fact, I feel better than before the treatment - which is probably due to removing the anxiety which had built up while waiting. Today, I have another blood sample to give for the trial, and tomorrow (Tuesday August 7) I will see another surgeon about draining the liquid from my leg; which would give great relief and allow me to function almost normally again. My energy has been good so far, especially in the mornings; with only a little bit of tiredness in late afternoons. After another blood sample at week end (Friday), I may finally be able to travel home again (about 7 hours by car from Mayo Clinic).
Tuesday August 7, 2007 : Today we visited with a plastic surgeon about liposuction on the fluid sac in my leg. Again, in keeping with the impressive coordination between doctors at Mayo, this surgeon paged my oncologist and went over the procedure to ensure all was within guidelines of my drug trial (do not want any aspect of the procedure to compromise my participation in the experimental drug trial). I have what is known as a complex hematoma; which implies that the fluid is in more than one adjoining compartment but still all within the same overall sac. Because of this aspect, I will have to have liposuction rather than just a needle extraction (which would only drain one of the compartments). The procedure will only take approximately 15 minutes, but I will still be put under general anaesthetia. It is an out-patient procedure, however, and I will get out of the hospital the same day. The only complication is prevention of another episode; which will require a drainage tube to be left in for a few weeks (the suction will force the muscles back together and over time eliminate the hole) and wearing a compression sleeve on that part of my leg. All in all, a small price to pay for relief and normal function again.
I am scheduled to have this done early tomorrow morning (August 8). Somehow I am a bit nervous about this procedure. It must the idea of undergoing general anaesthesia again. I was told that this condition is common in patients who have undergone radical leg surgery (such as mine). This whole procedure is much simpler than my first surgery, so it makes no sense to be nervous. I should be pleased to have this done and over, and moving on toward normal activities again.
Prayer Requests:
-- For effectiveness of this new antibody drug in my system, that it will work against my cancer cells and give a long-term option for treatment.
-- For a successful liposuction surgery on my leg, and healing afterwards to prevent another episode.
-- For continued health (particularly strengthened lung function), as I move further away from the days of chemotherapy; so that I can start to function and live again in a normal fashion, and have more enjoyment with family and friends.
-- For the many others who are suffering with cancer treatments, diagnosis, or just uncertainty related to this disease. May their fear and anxiety be replaced by hope and peace, both in mind and heart.
BRENT
I feel the need to share happenings of my first week at Mayo Clinic; both what happened and my thoughts / emotions of the experience. I hope this will help everyone to understand where things stand now. We arrived in Rochester, Minnesota, about 4 days early. The reason was to just be available around Mayo Clinic and associated hospitals, in case anything were to develop that needed attention. The main goal is to get into the experimental drug trial, and not let these side issues continue to cause delay. We have realized that my best hope is to be a patient at Mayo Clinic, and to take this new drug; so it is best to let doctors at Mayo handle any side issues (such as lung and leg problems which had developed over the previous month). I have been off chemotherapy treatment for about 6 weeks, so it was critical that this new experimental drug be administered into my blood stream as soon as possible. My tests, consultations and treatment where scheduled to run from August 1st to August 3rd.
Wednesday August 1, 2007 : This was a very difficult day for me; both physically and emotionally. Mayo Clinic is an extremely large and beautiful facility. It is 10 stories high, and runs continuously for 4 city blocks with walk ways under the streets. Due to my leg pain, and general health after chemo applications, I was physically tired even before the day started. I was taken through 7 different tests, including scans of my lungs (CT) and my leg (MRI); as well as heart tests. This was physically exhausting (7:00 AM to 4:00 PM); but I was also mentally and emotionally very tense and anxious. What would the tests show ? particularly the leg MRI ? .... Would I really qualify for the trial ? or would something again come in the way ? Also, upon reflection, I realized the cause of being emotionally tense; my last experience in a large medical clinic was New York in May, when my previous oncologist informed of lung metastasis and left us with little or no hope for the future. This experience was like a deep open wound which never healed; all of those feelings of helplessness, hopelessness and desperation came rushing back. On this first day at Mayo Clinic we did not see a doctor, just the medical staff administering the tests; so it was easy to let one's mind drift to negative thoughts. On the positive side, I can attest that Mayo Clinic is a much better facility than any I have seen before, with a very efficient system of handling patients and very knowledgeable / kind hearted professional staff.
Thursday August 2, 2007 : The day after so many tests, we then met with a new oncologist and experimental drug trial coordinator. These meetings were more encouraging; essentially my new oncologist has similar expertise as the doctor in NY, but with a somewhat better interactive manner (as least I felt more encouraged in talking with him). There were still a couple of points of uncertainty; one being about my true cancer cell type and the other about whether my leg needed surgery and how this would impact my ability to participate in the new drug trial. Based on the lung biopsy slides we brought from our local hospital, the Mayo pathologists could not confirm whether I had rhabdomyo sarcoma or just a generalized sarcoma. To gain entry into this trial, I had to have the rhabdo type; so the oncologist decided to go with the original pathology report from the cancer center in NY (Memorial Sloan Kettering - MSKCC) based on the actual tumor removed from my leg in August 2006, which indicated a rhabdo cell type. MSKCC has a high degree of credibility in sarcoma diagnosis and surgery, due to decades of experience; so it is likely that this original diagnosis was correct and the recurrence in my lungs is also the same cell type. The Mayo Clinic oncologist did indicate that either way, this new drug treatment is the best option going forward and can replace chemotherapy as a first line treatment option for sarcoma.
The second concern was what the Mayo surgeon would say about treating my leg. I was scheduled to consult with this surgeon a few hours after seeing the oncologist, and my ability to participate in the drug trial would depend on not having surgery. Fortunately, the MRI report on my leg showed a fluid sac, and not a tumor. During consultation with the Mayo surgeon, my oncologist also came to plead my case with the surgeon and ensure that no surgery was recommended. Instead I was given an appointment with a liposuction surgeon next week to look at options for draining the fluid in a non-invasive manner. Finally, at the end of my meeting with the surgeon, he informed me that this type of fluid accumulation is common with radical leg surgery (such as I had) and my situation was not threatening to the leg function and therefore not urgent; just keep it wrapped until it can be drained. We then had a visit (same room as surgical consultation) from the experimental drug trial coordinator and trial nurse, to finalize my paperwork for participation in the trial and discuss taking first round drug treatment the next morning. This was the most impressive aspect of our time at Mayo Clinic; the absolute coordination between various specialists to focus on needs and convenience of the patient. It also seemed that the trial group and my oncologist were all keen to have me get into the trial, because it could help my condition (although being a rare case was also useful).
Finally, some interesting information about this drug trial. Apparently this new drug has been administered to a number of cancer patients previously with different cancer types; but the trial for sarcomas is somewhat new. With other cancer types, this drug is mixed with chemotherapy, while with sarcomas it is administered as a stand alone therapy. There are three types of sarcomas being admitted into this trial, but I am the only representative with my cell type (rare condition in adults). I also received the last opening into the trial; so this has been fortunate on two fronts. Receiving the last opening into the trial is fortunate in and of itself (just in time), but also being at the end means that an effective and safe dosage has already been worked out (I am administered a high dosage in the first treatment itself).
Friday August 3rd, 2007 : On this day, I actually received the new experimental drug through IV drip, which lasted for 5 hours. This was much easier and safer than chemotherapy I had been taking. Since this drug is an antibody, there is always concern for allergic reaction; so I was watched closely for the first hour or so. But nothing negative happened and the application went smoothly. The treatment rooms at Mayo Clinic are very nice; private rooms with good facilities for relaxation during the process. Since this is part of a research trial, blood was drawn before the application and spun in a mobile centrifuge in the room itself, to separate out the serum fraction for analysis. I also need to provide blood samples on days 2, 4, 8, 15, and finally 21, after the treatment. Each cycle of drug application is 3 weeks, so in this way it is like chemotherapy. However, side effects for this drug, as seen in patients to date, are very minimal; possibly a bit of tiredness and some symptoms of a common cold (stuffed nose, etc.).
The theory of this antibody is to block nutrient supply to cancer cells, through binding to receptors on the cells which are needed to capture sugar sources from the blood stream. In cell culture studies done prior to the patient trials, this drug has shown strong promise in cells similar to my rare type. So now we will find out how it works in my body. It is clear that traditional chemotherapy will not remove the cancer from my system, but only hold it in check on a short-term basis with great damage to my normal cells. This new antibody drug provides a chance to destroy the cancer cells, or at least to also hold them in check without such damage to the body compared to chemotherapy. We are praying for the best, and hoping that I can take this drug with good effect for a long time.
Monday August 6, 2007 : As I write this note, I am pleased that no noticeable side effects from my treatment have come. In fact, I feel better than before the treatment - which is probably due to removing the anxiety which had built up while waiting. Today, I have another blood sample to give for the trial, and tomorrow (Tuesday August 7) I will see another surgeon about draining the liquid from my leg; which would give great relief and allow me to function almost normally again. My energy has been good so far, especially in the mornings; with only a little bit of tiredness in late afternoons. After another blood sample at week end (Friday), I may finally be able to travel home again (about 7 hours by car from Mayo Clinic).
Tuesday August 7, 2007 : Today we visited with a plastic surgeon about liposuction on the fluid sac in my leg. Again, in keeping with the impressive coordination between doctors at Mayo, this surgeon paged my oncologist and went over the procedure to ensure all was within guidelines of my drug trial (do not want any aspect of the procedure to compromise my participation in the experimental drug trial). I have what is known as a complex hematoma; which implies that the fluid is in more than one adjoining compartment but still all within the same overall sac. Because of this aspect, I will have to have liposuction rather than just a needle extraction (which would only drain one of the compartments). The procedure will only take approximately 15 minutes, but I will still be put under general anaesthetia. It is an out-patient procedure, however, and I will get out of the hospital the same day. The only complication is prevention of another episode; which will require a drainage tube to be left in for a few weeks (the suction will force the muscles back together and over time eliminate the hole) and wearing a compression sleeve on that part of my leg. All in all, a small price to pay for relief and normal function again.
I am scheduled to have this done early tomorrow morning (August 8). Somehow I am a bit nervous about this procedure. It must the idea of undergoing general anaesthesia again. I was told that this condition is common in patients who have undergone radical leg surgery (such as mine). This whole procedure is much simpler than my first surgery, so it makes no sense to be nervous. I should be pleased to have this done and over, and moving on toward normal activities again.
Prayer Requests:
-- For effectiveness of this new antibody drug in my system, that it will work against my cancer cells and give a long-term option for treatment.
-- For a successful liposuction surgery on my leg, and healing afterwards to prevent another episode.
-- For continued health (particularly strengthened lung function), as I move further away from the days of chemotherapy; so that I can start to function and live again in a normal fashion, and have more enjoyment with family and friends.
-- For the many others who are suffering with cancer treatments, diagnosis, or just uncertainty related to this disease. May their fear and anxiety be replaced by hope and peace, both in mind and heart.
BRENT
Sunday, July 29, 2007
A New Part of the Journey
I write this passage while sitting next to the hotel swimming pool, watching my sons and wife enjoy the water. We are at a hotel in Minnesota, but for how long I do not know. We have now arrived at Rochester, the home of Mayo Clinic, where I am to participate in a new drug trial using a mono-clonal antibody which has promise for sarcomas, and in particular the type afflicting my body. This brings a time of renewed hope; but also uncertainties and adjustments needing to be made. At the same time, while watching my family swim, I wonder how much longer I will have the privileged of doing so. It is impossible to not have such thoughts; if one is honest and willing to admit it.
This past week started with my leg pain increasing again; after a time of decrease. The increase in pain was associated with new swelling in the same area, but also in an area next just next to this. It got to be so problematic, and worrisome, that I went to visit my oncologist on both Thursday and Friday for advice. By Friday, I was sure that this will require surgery to remove whatever is inside. The MRI and radiologists report was uncertain of the cause, but advised to consider it a recurrence of the same cancer until proven otherwise; which was the same language my doctor was using in trying to listen and treat my problem. However, treating it as cancer brings up many complications and concerns. It became apparent by Friday that there was little which could be done at my local hospital, if surgery was required; as the problem appeared to be very specialized. I was just advised to take pain killer and get to Mayo Clinic to meet with a surgeon.
However, on Friday afternoon my doctor was able to refer me to visit with an orthopedic nurse who has many years of experience and works closely with the orthopedic surgeon at my local hospital. It turn out that she was much more informative and knowledgeable about the situation for the leg, than the oncologist / radiologist had been. After describing the symptoms to her, and showing the area of swelling, she immediately diagnosed a "seroma", or serum (fluid) accumulation in the suture site from my previous surgery. The swelling, up and down, and tightness, as well as muscle pain surrounding, was classic for this type of problem - often seen in areas of major surgery of the legs. What is really required is drainage of the fluids and pressure wrap to prevent future build-up. She advised to take a different pain killer and anti-inflammatory drug immediately, and wrap the leg to prevent further fluid accumulation. After following her advice, I immediate got relief, both physically and mentally.
All of this made much more sense, considering the circumstances over the past 6 weeks with this problem. How could it have a tumor origin and be growing so substantially during my last 2 chemo rounds, when at the same time we had measurable proof that those same chemo rounds have inhibited the tumors in my lungs from growing at all ? How could it be of tumor origin if it reduced and became soft for a period of time ? I really suffered from worry over this for the past weeks, because any need for surgery on my leg would prevent my participating in the new drug trial on time; and thus give the tumors in my lungs a chance to renew growth and gain size quickly. On the other hand, any rapid growth of tumor in that area of the leg, without being addressed quickly, could develop complications that would require amputation. How does one chose between protecting your lungs or losing your leg ? Surely timely decisions and direction could prevent such a decision from being necessary in the first place ? But what is that timely decision ? What type of dilemma is this ? I have been concerned about this choice coming on for a long time, and searching for reasons why God is placing such obstacles to my participation in this drug trial. It is good to realize that my leg issue may be easily treatable, and we can indeed participate in the drug trial on time ("Oh ye of little faith").
All of these concerns over the past week have led us to the decision to arrive at Mayo Clinic much earlier then the original schedule. We have realized that my future treatment lies here at Mayo Clinic, and if any complications arise they need to be addressed at Mayo Clinic so that everything can be coordinated (drug applications, leg treatment, any further lung issues). We will not have to live in this town, but while I get treatment for my leg and start the first round of drug treatment, we may have to stay in this area for about 3 out of 4 weeks. After that, it will just be coming for follow-up treatments and scans, then driving back home. The drive is about 7 hours on good highway all the distance; so it is reasonable.
A bit more about the new drug I will be taking. This is a Phase I trial, which means that the drug will be give in every increasing dosages, until it is determined that further increase is dangerous to the body. This means that I may be at considerable risk of overdose or damage to my system. But on the other hand, I may also benefit by having my cancer slowed or stopped. We have chosen this trial specifically, because of advice from many leading oncologists and pre-clinical evidence that this drug strategy can be very effective against my rare tumor type. Gaining a cure or removal of the tumors is almost too much to hope, but it is also possible. Normally these types of antibodies (those approved for market) are given along side of traditional chemotherapy; and the supplemental approach proves most beneficial in removing the cancer. This option will not be available to me; so we will have to live with whatever benefit the antibody brings on its own. Again, if it slows or stops my cancer from growing, like my previous chemotherapy did, then I can take it for an extended period of time (theoretically, one could take such an antibody indefinitely - as it would have less adverse effects than traditional chemotherapy). However, I am running out of chemotherapy options, and my body is tired of this; so it may be a blessing.
I feel God's guidance in bringing us to his place, at this time. We were led by the advice of many doctors to this particular drug trial. A friend in India sent me a list of trials being undertaken at one cancer center in the US, which I submitted to the daughter of a friend who happened to be a doctor at an allied hospital. She was able to get immediate response from the drug trial coordinator at that center, who informed us of this new drug trial being started at Mayo Clinic immediately. When we looked up this drug trial on the Internet, it was clear that the participating research clinics were recruiting males with my rare tumor type. My local doctor then referred my case to Mayo Clinic, and I got a call with offer to participate. At the same time, we had been informed of this new drug concept by my original doctor and surgeon in NY; but they did not have he trial to offer. We found out which companies were making these drugs (3 of the major pharmaceutical companies are involved), and Usha contacted a former Head of one of these companies whom she knows. He immediately got information sent to us, from research leaders involved. From all of this information, it was clear that this was my best option for a next step in trying to bring my cancer under control.
As I don't believe in chance occurrences, I am lead to feel a reason behind our presence here; and hope so see God's plan in the coming weeks and months. We are praying for a smooth first application during the upcoming week, and guidance thereafter; as well as growing faith in what is to come. I know that many of you are also praying for our health, well being and God's peace; and I sincerely thank everyone.
This past week started with my leg pain increasing again; after a time of decrease. The increase in pain was associated with new swelling in the same area, but also in an area next just next to this. It got to be so problematic, and worrisome, that I went to visit my oncologist on both Thursday and Friday for advice. By Friday, I was sure that this will require surgery to remove whatever is inside. The MRI and radiologists report was uncertain of the cause, but advised to consider it a recurrence of the same cancer until proven otherwise; which was the same language my doctor was using in trying to listen and treat my problem. However, treating it as cancer brings up many complications and concerns. It became apparent by Friday that there was little which could be done at my local hospital, if surgery was required; as the problem appeared to be very specialized. I was just advised to take pain killer and get to Mayo Clinic to meet with a surgeon.
However, on Friday afternoon my doctor was able to refer me to visit with an orthopedic nurse who has many years of experience and works closely with the orthopedic surgeon at my local hospital. It turn out that she was much more informative and knowledgeable about the situation for the leg, than the oncologist / radiologist had been. After describing the symptoms to her, and showing the area of swelling, she immediately diagnosed a "seroma", or serum (fluid) accumulation in the suture site from my previous surgery. The swelling, up and down, and tightness, as well as muscle pain surrounding, was classic for this type of problem - often seen in areas of major surgery of the legs. What is really required is drainage of the fluids and pressure wrap to prevent future build-up. She advised to take a different pain killer and anti-inflammatory drug immediately, and wrap the leg to prevent further fluid accumulation. After following her advice, I immediate got relief, both physically and mentally.
All of this made much more sense, considering the circumstances over the past 6 weeks with this problem. How could it have a tumor origin and be growing so substantially during my last 2 chemo rounds, when at the same time we had measurable proof that those same chemo rounds have inhibited the tumors in my lungs from growing at all ? How could it be of tumor origin if it reduced and became soft for a period of time ? I really suffered from worry over this for the past weeks, because any need for surgery on my leg would prevent my participating in the new drug trial on time; and thus give the tumors in my lungs a chance to renew growth and gain size quickly. On the other hand, any rapid growth of tumor in that area of the leg, without being addressed quickly, could develop complications that would require amputation. How does one chose between protecting your lungs or losing your leg ? Surely timely decisions and direction could prevent such a decision from being necessary in the first place ? But what is that timely decision ? What type of dilemma is this ? I have been concerned about this choice coming on for a long time, and searching for reasons why God is placing such obstacles to my participation in this drug trial. It is good to realize that my leg issue may be easily treatable, and we can indeed participate in the drug trial on time ("Oh ye of little faith").
All of these concerns over the past week have led us to the decision to arrive at Mayo Clinic much earlier then the original schedule. We have realized that my future treatment lies here at Mayo Clinic, and if any complications arise they need to be addressed at Mayo Clinic so that everything can be coordinated (drug applications, leg treatment, any further lung issues). We will not have to live in this town, but while I get treatment for my leg and start the first round of drug treatment, we may have to stay in this area for about 3 out of 4 weeks. After that, it will just be coming for follow-up treatments and scans, then driving back home. The drive is about 7 hours on good highway all the distance; so it is reasonable.
A bit more about the new drug I will be taking. This is a Phase I trial, which means that the drug will be give in every increasing dosages, until it is determined that further increase is dangerous to the body. This means that I may be at considerable risk of overdose or damage to my system. But on the other hand, I may also benefit by having my cancer slowed or stopped. We have chosen this trial specifically, because of advice from many leading oncologists and pre-clinical evidence that this drug strategy can be very effective against my rare tumor type. Gaining a cure or removal of the tumors is almost too much to hope, but it is also possible. Normally these types of antibodies (those approved for market) are given along side of traditional chemotherapy; and the supplemental approach proves most beneficial in removing the cancer. This option will not be available to me; so we will have to live with whatever benefit the antibody brings on its own. Again, if it slows or stops my cancer from growing, like my previous chemotherapy did, then I can take it for an extended period of time (theoretically, one could take such an antibody indefinitely - as it would have less adverse effects than traditional chemotherapy). However, I am running out of chemotherapy options, and my body is tired of this; so it may be a blessing.
I feel God's guidance in bringing us to his place, at this time. We were led by the advice of many doctors to this particular drug trial. A friend in India sent me a list of trials being undertaken at one cancer center in the US, which I submitted to the daughter of a friend who happened to be a doctor at an allied hospital. She was able to get immediate response from the drug trial coordinator at that center, who informed us of this new drug trial being started at Mayo Clinic immediately. When we looked up this drug trial on the Internet, it was clear that the participating research clinics were recruiting males with my rare tumor type. My local doctor then referred my case to Mayo Clinic, and I got a call with offer to participate. At the same time, we had been informed of this new drug concept by my original doctor and surgeon in NY; but they did not have he trial to offer. We found out which companies were making these drugs (3 of the major pharmaceutical companies are involved), and Usha contacted a former Head of one of these companies whom she knows. He immediately got information sent to us, from research leaders involved. From all of this information, it was clear that this was my best option for a next step in trying to bring my cancer under control.
As I don't believe in chance occurrences, I am lead to feel a reason behind our presence here; and hope so see God's plan in the coming weeks and months. We are praying for a smooth first application during the upcoming week, and guidance thereafter; as well as growing faith in what is to come. I know that many of you are also praying for our health, well being and God's peace; and I sincerely thank everyone.
Sunday, July 22, 2007
More Thoughts, While Waiting
"Wait for the Lord; be strong and take heart, and wait for the Lord."
Psalm 27:14
To you, O Lord, I lift up my soul. I wait in great anticipation for what you will do in my life today ... prayer by April Yamasaki
Waiting is hard; spiritually productive waiting is even harder. It seems that I am always waiting; for start of new treatment, for relief from my leg pain, for return to health, for direction from God and understanding answers to prayer. How to use waiting as an opportunity for spiritual growth? How to learn patience, and quiet listening for God's instruction through prayer? Surely, waiting is also a discipline that can be learned; but waiting is hard.
I thought it might be useful to share some of the things that I have been doing while waiting over the past two weeks.
First, a couple of health updates, since getting out of the hospital:
-- A check up and X-ray showed that my left lung is doing well (appears healed from the earlier collapse).
-- The large lump in my left leg has shrunken somewhat, and softened. So at least we know that some part of the enlargement is due to fluid accumulation. It is located just below the original surgical site, and is probably inside of a suture site tied by my original surgeon. I now have an appointment with a new surgeon at Mayo Clinic, during my first visit there. I am hoping he can give me some relief, by draining the site. It can be very painful at times, and limits my movement.
-- Usha and I will go to Mayo Clinic on August 1st, and we will be there for about one week while taking a new experimental drug. I want to establish with both an oncologist and a surgeon at Mayo Clinic; because we will no longer be going to New York (where I had my original surgery and chemo treatment).
----------------------------
I have spend the past couple of weeks studying the book of John (NIV). I can't say exactly why I chose this book, other than I was drawn to again reading this account of Jesus' ministry. Some of the verses from John which spoke to me:
John 12:27-28 Jesus discussing his suffering ... "Now my heart is troubled, and what shall I say? 'Father, save me from this hour'? No, it was for this very reason I came to this hour. Father, glorify your name!"
John 14:26-27 Jesus describing sending of the Holy Spirit, peace and courage ... "But the Counselor, the Holy Spirit, whom the Father will send in my name, will teach you all things and will remind you of everything I have said to you. Peace I leave with you; my peace I give you. I do not give you as the world gives. Do not let your hearts be troubled and do not be afraid."
Some other verses, suggested by friends:
Isaiah 41:10
I John 5:14-15
Romans 5:1-5
Philippians 4:4-7 (I use these verses daily)
-------------------
Some portion of the correspondence I have had with a good friend, may be useful to share here. It helps in sharing some of my state of mind these past weeks. The following is part of what I wrote, when we were discussing spiritual growth:
"Thanks for this message, and your previous message from a few days back. After spending a week in the hospital, I really have felt physically and emotionally 'beat up'; so I have taken time to just recover and not be active in messaging, or blogging. Spiritually, I don't feel beat up, but rather just more in a waiting mode, to hear what He has for me; why these serious and unexpected detours before we can get to Mayo for the new drug trial. These are questions; but waiting for God's voice without being anxious is a discipline needed to be learned, and I am making progress. When I got to the hospital, I took it in good form (there were worse possibilities than a collapsed lung); but as time went on it was easy to become impatient. I am not happy with my spiritual reaction to my first long term stay in the hospital; but this is just a trial run for God to teach me how to go through these situations in the future with more spiritual strength ............ I appreciate the challenging questions posed in your previous email. Ever since my understanding and acceptance of Jesus as Saviour, and subsequent baptism, I have gone through life with a strong feeling of God being with me in decisions and protecting me in many ways which could be seen at the time and also in retrospect. This is the first experience in my life, when it is easy to feel that God has not chosen to protect me directly; but rather challenge me through this life changing experience. This is a real change in my relationship and understanding of Him; and why I feel need to totally reevaluate my spiritual maturing and relationship. Perhaps this is God's way of challenging, and informing that I have not grown enough and need to take more urgency in study and reflection and prayer; as well as appreciation of relationships with others. I don't know if He is calling me home now, or in the near future; or whether a miracle will cure me and inspire me to a new purpose in life which will more directly use my gifts. Patiently waiting for answers to these questions, in study, prayer and meditation, is where I need to be now. I know that I am surrounded in prayer by so many others, and am grateful for this ........... God has not done this to me; this I know. But for the first time in my life, He has allowed something really bad to happen. How I respond, spiritually, will be my life's story in so many ways. How I respond will also set the tone for how my wife and children grow in the Lord; which is an awesome responsibility for me. I often feel inadequate to the task."
-----------------------
I will end with some prayer requests:
1) For continued health to reach Mayo Clinic on time; and that the new drug given will provide healing and long term option for health. Guidance for the doctors, with judgement for my treatment needs.
2) Healing and relief for the pain in my leg; and for understanding of how and when to treat this new problem in relation to the new drug trial participation. Again, guidance for the new surgeon who will take my case.
3) Improvement in my patience, and learning to wait on the Lord for guidance; with wisdom to hear and understand. Also, improvement in my discipline for study and faithful prayer.
4) To receive God's peace, and be thankful for what we have been given.
-----------------------
Thank you all for the many prayers, cards and gifts. A special thanks to Jeff, Lana and family for the knotted prayer quilt. I counted; there are 63 knots in the quilt, and therefore 63 prayers said during its making. A special gift indeed!
BRENT
Psalm 27:14
To you, O Lord, I lift up my soul. I wait in great anticipation for what you will do in my life today ... prayer by April Yamasaki
Waiting is hard; spiritually productive waiting is even harder. It seems that I am always waiting; for start of new treatment, for relief from my leg pain, for return to health, for direction from God and understanding answers to prayer. How to use waiting as an opportunity for spiritual growth? How to learn patience, and quiet listening for God's instruction through prayer? Surely, waiting is also a discipline that can be learned; but waiting is hard.
I thought it might be useful to share some of the things that I have been doing while waiting over the past two weeks.
First, a couple of health updates, since getting out of the hospital:
-- A check up and X-ray showed that my left lung is doing well (appears healed from the earlier collapse).
-- The large lump in my left leg has shrunken somewhat, and softened. So at least we know that some part of the enlargement is due to fluid accumulation. It is located just below the original surgical site, and is probably inside of a suture site tied by my original surgeon. I now have an appointment with a new surgeon at Mayo Clinic, during my first visit there. I am hoping he can give me some relief, by draining the site. It can be very painful at times, and limits my movement.
-- Usha and I will go to Mayo Clinic on August 1st, and we will be there for about one week while taking a new experimental drug. I want to establish with both an oncologist and a surgeon at Mayo Clinic; because we will no longer be going to New York (where I had my original surgery and chemo treatment).
----------------------------
I have spend the past couple of weeks studying the book of John (NIV). I can't say exactly why I chose this book, other than I was drawn to again reading this account of Jesus' ministry. Some of the verses from John which spoke to me:
John 12:27-28 Jesus discussing his suffering ... "Now my heart is troubled, and what shall I say? 'Father, save me from this hour'? No, it was for this very reason I came to this hour. Father, glorify your name!"
John 14:26-27 Jesus describing sending of the Holy Spirit, peace and courage ... "But the Counselor, the Holy Spirit, whom the Father will send in my name, will teach you all things and will remind you of everything I have said to you. Peace I leave with you; my peace I give you. I do not give you as the world gives. Do not let your hearts be troubled and do not be afraid."
Some other verses, suggested by friends:
Isaiah 41:10
I John 5:14-15
Romans 5:1-5
Philippians 4:4-7 (I use these verses daily)
-------------------
Some portion of the correspondence I have had with a good friend, may be useful to share here. It helps in sharing some of my state of mind these past weeks. The following is part of what I wrote, when we were discussing spiritual growth:
"Thanks for this message, and your previous message from a few days back. After spending a week in the hospital, I really have felt physically and emotionally 'beat up'; so I have taken time to just recover and not be active in messaging, or blogging. Spiritually, I don't feel beat up, but rather just more in a waiting mode, to hear what He has for me; why these serious and unexpected detours before we can get to Mayo for the new drug trial. These are questions; but waiting for God's voice without being anxious is a discipline needed to be learned, and I am making progress. When I got to the hospital, I took it in good form (there were worse possibilities than a collapsed lung); but as time went on it was easy to become impatient. I am not happy with my spiritual reaction to my first long term stay in the hospital; but this is just a trial run for God to teach me how to go through these situations in the future with more spiritual strength ............ I appreciate the challenging questions posed in your previous email. Ever since my understanding and acceptance of Jesus as Saviour, and subsequent baptism, I have gone through life with a strong feeling of God being with me in decisions and protecting me in many ways which could be seen at the time and also in retrospect. This is the first experience in my life, when it is easy to feel that God has not chosen to protect me directly; but rather challenge me through this life changing experience. This is a real change in my relationship and understanding of Him; and why I feel need to totally reevaluate my spiritual maturing and relationship. Perhaps this is God's way of challenging, and informing that I have not grown enough and need to take more urgency in study and reflection and prayer; as well as appreciation of relationships with others. I don't know if He is calling me home now, or in the near future; or whether a miracle will cure me and inspire me to a new purpose in life which will more directly use my gifts. Patiently waiting for answers to these questions, in study, prayer and meditation, is where I need to be now. I know that I am surrounded in prayer by so many others, and am grateful for this ........... God has not done this to me; this I know. But for the first time in my life, He has allowed something really bad to happen. How I respond, spiritually, will be my life's story in so many ways. How I respond will also set the tone for how my wife and children grow in the Lord; which is an awesome responsibility for me. I often feel inadequate to the task."
-----------------------
I will end with some prayer requests:
1) For continued health to reach Mayo Clinic on time; and that the new drug given will provide healing and long term option for health. Guidance for the doctors, with judgement for my treatment needs.
2) Healing and relief for the pain in my leg; and for understanding of how and when to treat this new problem in relation to the new drug trial participation. Again, guidance for the new surgeon who will take my case.
3) Improvement in my patience, and learning to wait on the Lord for guidance; with wisdom to hear and understand. Also, improvement in my discipline for study and faithful prayer.
4) To receive God's peace, and be thankful for what we have been given.
-----------------------
Thank you all for the many prayers, cards and gifts. A special thanks to Jeff, Lana and family for the knotted prayer quilt. I counted; there are 63 knots in the quilt, and therefore 63 prayers said during its making. A special gift indeed!
BRENT
Sunday, July 15, 2007
More Details on Health Update, and Next Steps
Dear Friends,
I am sorry for not being more consistent in writing these Blogs the past few weeks. As you can tell from my last entry, I have had a couple of unexpected health set-backs; one which required a hospital stay for over one week. After getting out of the hospital, I have just felt really "beat-up" both physically and mentally; so I have taken time for recovery (still in progress) before writing more details about my status. I get questions about details of my health, and next steps for treatment; so I will write more about this now (even though I know it is not good to dwell on these things, I think many of you are interested).
First the positives:
Entry into new drug trial. I have been accepted at Mayo Clinic for a new drug trial. This new drug is not a traditional "chemo" treatment (chemical which targets cell replication: any cell, whether cancer or healthy). Rather, this new drug is a "monoclonal antibody"; and as such is targeted to specific cell components which are prevalent in the cancer cells and not in the normal cells. One good aspect of this drug is its design, in concept, and pre-clinical trial proofs have effective in cancer cells similar to mine. So if it works, it should work very effectively. Originally, we were supposed to go to Mayo Clinic to start this week; but had to delay due to an unexpected health complication (more on that later). Now, we are scheduled to go there August 1 to begin. Actually, there are a couple of positives in waiting; it gives my body time to recover (my body deserves a break) and starting this trial later will imply a higher initial dosage (this is a Phase I trial for understanding dosage effects, with increasing dosages each time any patient is administered the drug). I would rather start with a higher dosage, which will be more effective; instead of being a trial patient in early stages dosages.
CT Scan results for lung nodules. A recent CT Scan was taken, which allowed my doctor to compare the lung nodule trends from June 1 CT image with July 4 CT image (to determine the effect of 2 rounds of the new chemotherapy regime). There has been no apparent change in size or number over these 5 weeks; which was pretty amazing considering how fast these were growing before we took the new chemo treatments. The radiologist report before June 1 CT scans was "rapid disease progression", and now the situation is classified as "stable". Even though my oncologist was disappointed that there has been no reversal of tumors, I am satisfied with keeping things in check (stable) for now. Based on my reading of my tumor type, and situation, it is clear that the best hope in chemotherapy is to keep things steady. Rarely would these treatments reverse or remove these type of nodules. Now, if I were to stay on chemo for a longer period, there would come a time when the nodules would develop resistance and start growing again (which is what happened with my original chemo regime). So this is a good time to stop the traditional chemo (before resistance is developed) and move to a new experimental drug approach which is more specifically targeted (Mayo Clinic trial).
The less positive news:
Lung complication. On July 3rd, I had trouble breathing when trying to sleep (passive breathing), and it degenerated to the point where I could not breath if trying to go to sleep. My active breathing while standing was acceptable, but obviously something was really wrong. We went into the hospital emergency room, took a CT scan of my lungs and throat, and found that part of my left lung had collapsed. This is called a "pneumothorax", and is not uncommon. In my case, the doctors could only guess as to why this happened; but I am sure of the reason. It is a residual of my lung biopsy from late May (a small needle was pushed into my left lung through my back to take a sample of one lung nodule). I had felt pain in my left chest and back about 3 days after the biopsy, but did not follow up because I was told that developing a pneumothorax 3 days after the biopsy would be very unusual. This pain went on for about one week, and then went away. But discomfort in my breathing came again just after my second application of chemo, and on July 3rd I felt a strong pain in my back (from top to bottom) after doing deep breathing exercises. While in the hospital getting this lung collapse corrected, I learned from my nurse to recognize the symptoms of this problem; and now understand that signs have been there for a chronic leak in my lung ever since the biopsy. What likely happened was a small leak at the time of the biopsy (or rather 3 days after, when I sleep on my left side after the bandages from the biopsy were removed); followed by my body compensating and compartmentalizing the problem. Then the new chemo (powerful drugs) caused leakage again (the leak was never really fixed properly); and finally by the second round of chemo and due to my deep breathing exercise, the collapse became full due to stress on the upper portion of the lung (these tend to collapse top to bottom, like unzipping a bag). The sudden pain in my back from top to bottom on July 3rd was the final collapse. The method used to correct the problem in the hospital is to insert a tube just below the ribs in the upper chest cavity, and then connecting to a reverse pressure pump (suction) which causes the lung to again expand and adhere to the lining of the chest cavity (plural layers stick together again). I was on this suction for 3 days, but when we tried to remove the pressure I started to again get a small separation at the top of the lung (X-rays are used to check each step of repair). So I had to again go onto the suction at double pressure for another 4 days, and then my lung finally repaired itself properly. Finally, to add "insult to injury", I developed a fever after my chest tube was removed and had to stay in the hospital an extra day for antibiotic treatments. Finally I got out of the hospital after 8 days of being in bed, and now for the first time I can understand how much energy is taken away when a person is stuck in the hospital for so long; unable to really get around and keep the muscles active. I have been out of hospital now for 5 days, but am still trying to get more energy back. I am also trying some moderate breathing exercises to keep the lung healthy.
Recurrence of large lump in my left leg. About 4 weeks ago, I went on a long walk (about 5 miles). The next day, an area just below my previous surgical site felt sore, and I could feel a hard lump there. This area has a history of swelling since my original surgery, but has never felt hard in nature. Since my first experience with tumor growth in my leg, I am sensitive to any hard lumps and concern for dealing with such as soon as possible. This lump was about the size of an adult thumb when first detected, but has now swelled to the size of a racquet ball (squash ball, for those of you in India). That is a very rapid growth for such a short time; and it is now bothering me to the point of being painful to sit or walk distances. We performed an MRI on this area, but couldn't get a clear diagnosis from the radiology group - except to say that it is "superficial" in nature and could be a recurrence of the original tumor, but could also be something else (undefined). Therefore, it could be another tumor or it could be something like a cyst which is accumulating fluids. This has been very discouraging; another detour in health that I did not need while waiting to start the Mayo Clinic trials. However, it is getting to the point where it must be dealt with on priority basis; so I have asked my new oncologist at Mayo Clinic to get an appointment with a surgeon there. I hope to see this new surgeon before August, and determine what to do about my leg before we start the drug trial. Because surgery and the drug trial cannot go on together, a decision will need to be made on sequence of events. I will need advice from the surgeon to gain direction on saving both my leg and getting involved in the new drug trial as soon as possible. Right now, this appears to complicate things again; but we hope and pray for clarity soon.
Back-up option for the lungs:
We were also able to locate a thoracic surgeon who has a strong history of removal of tumors from lungs of cancer patients. Most of the doctors (non-surgeons) we spoke with had indicated surgery was too difficult in my case. However, apparently it is possible in the right hands. If we had to take this option, it would involve a difficult operation and require more than a month recovery time; while leaving me with about one-half of original lung capacity. I met with this surgeon for discussions, and feel very comfortable with him. However, my recent experience with the pneumothorax has given me a greater respect for the difficulties which would occur. I had in mind that this would be a requirement, and a high priority; but now feel that surgery is a last resort after other treatments failed to remove the nodules. I would rather give the new drug trial a chance, or other options, before going to this option. However, it is good to know that this option is present if required. Lung surgery would also not be curative, but would provide some time of remission.
It seems that going through the pneumothorax was God's way of helping better define priorities.
Well, this has been long winded. I will write more about other things in the next Blog.
Your Friend,
BRENT
I am sorry for not being more consistent in writing these Blogs the past few weeks. As you can tell from my last entry, I have had a couple of unexpected health set-backs; one which required a hospital stay for over one week. After getting out of the hospital, I have just felt really "beat-up" both physically and mentally; so I have taken time for recovery (still in progress) before writing more details about my status. I get questions about details of my health, and next steps for treatment; so I will write more about this now (even though I know it is not good to dwell on these things, I think many of you are interested).
First the positives:
Entry into new drug trial. I have been accepted at Mayo Clinic for a new drug trial. This new drug is not a traditional "chemo" treatment (chemical which targets cell replication: any cell, whether cancer or healthy). Rather, this new drug is a "monoclonal antibody"; and as such is targeted to specific cell components which are prevalent in the cancer cells and not in the normal cells. One good aspect of this drug is its design, in concept, and pre-clinical trial proofs have effective in cancer cells similar to mine. So if it works, it should work very effectively. Originally, we were supposed to go to Mayo Clinic to start this week; but had to delay due to an unexpected health complication (more on that later). Now, we are scheduled to go there August 1 to begin. Actually, there are a couple of positives in waiting; it gives my body time to recover (my body deserves a break) and starting this trial later will imply a higher initial dosage (this is a Phase I trial for understanding dosage effects, with increasing dosages each time any patient is administered the drug). I would rather start with a higher dosage, which will be more effective; instead of being a trial patient in early stages dosages.
CT Scan results for lung nodules. A recent CT Scan was taken, which allowed my doctor to compare the lung nodule trends from June 1 CT image with July 4 CT image (to determine the effect of 2 rounds of the new chemotherapy regime). There has been no apparent change in size or number over these 5 weeks; which was pretty amazing considering how fast these were growing before we took the new chemo treatments. The radiologist report before June 1 CT scans was "rapid disease progression", and now the situation is classified as "stable". Even though my oncologist was disappointed that there has been no reversal of tumors, I am satisfied with keeping things in check (stable) for now. Based on my reading of my tumor type, and situation, it is clear that the best hope in chemotherapy is to keep things steady. Rarely would these treatments reverse or remove these type of nodules. Now, if I were to stay on chemo for a longer period, there would come a time when the nodules would develop resistance and start growing again (which is what happened with my original chemo regime). So this is a good time to stop the traditional chemo (before resistance is developed) and move to a new experimental drug approach which is more specifically targeted (Mayo Clinic trial).
The less positive news:
Lung complication. On July 3rd, I had trouble breathing when trying to sleep (passive breathing), and it degenerated to the point where I could not breath if trying to go to sleep. My active breathing while standing was acceptable, but obviously something was really wrong. We went into the hospital emergency room, took a CT scan of my lungs and throat, and found that part of my left lung had collapsed. This is called a "pneumothorax", and is not uncommon. In my case, the doctors could only guess as to why this happened; but I am sure of the reason. It is a residual of my lung biopsy from late May (a small needle was pushed into my left lung through my back to take a sample of one lung nodule). I had felt pain in my left chest and back about 3 days after the biopsy, but did not follow up because I was told that developing a pneumothorax 3 days after the biopsy would be very unusual. This pain went on for about one week, and then went away. But discomfort in my breathing came again just after my second application of chemo, and on July 3rd I felt a strong pain in my back (from top to bottom) after doing deep breathing exercises. While in the hospital getting this lung collapse corrected, I learned from my nurse to recognize the symptoms of this problem; and now understand that signs have been there for a chronic leak in my lung ever since the biopsy. What likely happened was a small leak at the time of the biopsy (or rather 3 days after, when I sleep on my left side after the bandages from the biopsy were removed); followed by my body compensating and compartmentalizing the problem. Then the new chemo (powerful drugs) caused leakage again (the leak was never really fixed properly); and finally by the second round of chemo and due to my deep breathing exercise, the collapse became full due to stress on the upper portion of the lung (these tend to collapse top to bottom, like unzipping a bag). The sudden pain in my back from top to bottom on July 3rd was the final collapse. The method used to correct the problem in the hospital is to insert a tube just below the ribs in the upper chest cavity, and then connecting to a reverse pressure pump (suction) which causes the lung to again expand and adhere to the lining of the chest cavity (plural layers stick together again). I was on this suction for 3 days, but when we tried to remove the pressure I started to again get a small separation at the top of the lung (X-rays are used to check each step of repair). So I had to again go onto the suction at double pressure for another 4 days, and then my lung finally repaired itself properly. Finally, to add "insult to injury", I developed a fever after my chest tube was removed and had to stay in the hospital an extra day for antibiotic treatments. Finally I got out of the hospital after 8 days of being in bed, and now for the first time I can understand how much energy is taken away when a person is stuck in the hospital for so long; unable to really get around and keep the muscles active. I have been out of hospital now for 5 days, but am still trying to get more energy back. I am also trying some moderate breathing exercises to keep the lung healthy.
Recurrence of large lump in my left leg. About 4 weeks ago, I went on a long walk (about 5 miles). The next day, an area just below my previous surgical site felt sore, and I could feel a hard lump there. This area has a history of swelling since my original surgery, but has never felt hard in nature. Since my first experience with tumor growth in my leg, I am sensitive to any hard lumps and concern for dealing with such as soon as possible. This lump was about the size of an adult thumb when first detected, but has now swelled to the size of a racquet ball (squash ball, for those of you in India). That is a very rapid growth for such a short time; and it is now bothering me to the point of being painful to sit or walk distances. We performed an MRI on this area, but couldn't get a clear diagnosis from the radiology group - except to say that it is "superficial" in nature and could be a recurrence of the original tumor, but could also be something else (undefined). Therefore, it could be another tumor or it could be something like a cyst which is accumulating fluids. This has been very discouraging; another detour in health that I did not need while waiting to start the Mayo Clinic trials. However, it is getting to the point where it must be dealt with on priority basis; so I have asked my new oncologist at Mayo Clinic to get an appointment with a surgeon there. I hope to see this new surgeon before August, and determine what to do about my leg before we start the drug trial. Because surgery and the drug trial cannot go on together, a decision will need to be made on sequence of events. I will need advice from the surgeon to gain direction on saving both my leg and getting involved in the new drug trial as soon as possible. Right now, this appears to complicate things again; but we hope and pray for clarity soon.
Back-up option for the lungs:
We were also able to locate a thoracic surgeon who has a strong history of removal of tumors from lungs of cancer patients. Most of the doctors (non-surgeons) we spoke with had indicated surgery was too difficult in my case. However, apparently it is possible in the right hands. If we had to take this option, it would involve a difficult operation and require more than a month recovery time; while leaving me with about one-half of original lung capacity. I met with this surgeon for discussions, and feel very comfortable with him. However, my recent experience with the pneumothorax has given me a greater respect for the difficulties which would occur. I had in mind that this would be a requirement, and a high priority; but now feel that surgery is a last resort after other treatments failed to remove the nodules. I would rather give the new drug trial a chance, or other options, before going to this option. However, it is good to know that this option is present if required. Lung surgery would also not be curative, but would provide some time of remission.
It seems that going through the pneumothorax was God's way of helping better define priorities.
Well, this has been long winded. I will write more about other things in the next Blog.
Your Friend,
BRENT
Wednesday, July 11, 2007
Update on New Developments
I know it has been a long time since my last entry. I was waiting to update various items until after July 1st, but then I waited too long. On July 3rd, I started developing serious breathing problems which required a trip to the emergency room; and then ended up as an 8 day hospital stay. The problem was a pneumothorax (partial collapse of left lung), and the treatment was too painful to consider sitting with a laptop computer to write anything meaningful. I write this note just as I am being checked out of the hospital, and can again operate a keyboard.
Some of the things which have happened over these past weeks :
-- Development and treatment of pneumothroax in my left lung, requiring 8 day stay in hospital; and development of fever while getting treated.
-- Being accepted into a new drug trial at Mayo Clinic; the new drug being a monoclonal antibody based therapy to replace chemotherapy.
-- Discovery that the new chemotherapy (last two rounds) has accomplished at least the minimum hoped for: it caused tumor growth in my lungs to stop (but didn't begin to remove them).
-- Discovery of a new lump in my left leg, just below the original surgical site. An MRI was not definitive in diagnosis, but it could be a recurrence of the same tumor type. Need to take follow up with another doctor at Mayo Clinic to decide what it is, or is not; and what to do about it.
This is just a summary of what has happened over the past weeks. I will write more detail later; once I am back home and have more time.
Thanks again for all the kind words, prayers and cards. Again, we need prayers for understanding of direction on future treatments, and which issues to deal with first.
Special thanks to Jean for all the neat little gifts I keep getting in the mail. I put together that last gift you sent; and read the message after getting the puzzle completed. A really neat idea.
BRENT
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