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