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