Cycle #15: General Update

One month ago I completed Cycle #15 and there are several things that I should discuss.

First, my leg. Overall I feel pretty good but 2 weeks after my last cycle, my left femur fractured. I was simply crossing the street, took a step, and heard a sound similar to a branch breaking on a cold day. The next thing I knew, my leg buckled, I fell, and I found myself laying on the sidewalk. I called an ambulance, went to the hospital, and to make a long story short, my leg was broken and I got surgery. There is a lesion, high in my femur, that had grown large enough to compromise the integrity of the entire bone. I knew about it and we had planned to radiate it, but I guess it was more serious than the X-ray suggested. In the surgery the lesion was not removed, rather, a nail was added to re-connect the femur and it seems to be healing alright. I am currently undergoing radiation to treat the lesion.

Second, CVD. Just after Cycle #13 we did CT scans to assess the success of the chemo. The latest scans showed slight disease worsening in a couple of areas but generally everything else looked the same. My oncologist seems to think that the cancer may have started becoming resistant to the chemo since there was no improvement, per se. It's a tough call as in some ways no change is a positive if the alternative is rapidly deteriorating health. The surgery and ensuing radiation is forcing a 2.5 month break from the CVD and in a few weeks we're going to do more CTs. If I am stable I will probably continue on CVD but if there is significant worsening, then CVD has run its course and we're onto the next.

Third, what is "next"? In two days I am meeting with the director of clinical trials at my hospital. She will let me know which, if any, trials are being run that could work for pheos/paras and that I am eligible for (these two things, of course, are unfortunately not always the same). I will know more after I meet with her. If there are no "new" options, then Sutent, Octreo, and MIBG, are my options. I may actually have already reached the lifetime limit of MIBG, I'm not sure, so I'll need to check on that one.

Sorry for the delay, but such is life.

Cycle #12: Day 1

Today I received my Day 1 regimen of CVD, which includes all three drugs. Not much to report on that other than my veins continue to be increasingly problematic to find & stick, and there did seem to be more burning upon administration, even with a heating pad and a saline mix. Other things worth sharing:

Last week I had a spinal MRI and that region continues to be stable, as in, no notable changes. The radiation oncologist showed me the image of the tumour that is interfering with my right brachial plexus (that has been doing so since October 2010, approximately 1 year ago from today). It is amazing how the combination of radiation + CVD has cleaned-out a lot of that area and there is less tumour to interfere with the plexus. Good news of course. This particular tumour, if unattended, can become immediately destructive as it is responsible for the hand, arm, shoulder, and upper chest.

Yesterday I had a cranial MRI and next week I will have a CT that will cover my knees, skull, and everything in between. As I get those results I will share them.

I will also take a moment to share to my current medication regimen:

• Labetolol, 100mg x2/day
• Doxazosin, 1mg x2/day
• Lovenox, 120mg x1/day

For the first 4 days of the chemo I also take:

• Neulasta (single injection on Day 3- 24 hrs after Day 2 chemo)
• Emend (Days 1, 2, and 3)
• Dexamethasone, 4mg x2/day (Days 1-4)
• Ondansetron 8mg x2/day (Days 1-4)

Off the top of my head I am not sure how this regimen differs, if at all, from whence I began. In the event that it is different it is worth noting (you can read earlier posts to see what I was doing in the beginning).

Cycle #11: Day 3

It has been a while since I have posted but frankly there is not much to report. So far, so good. Here is all I can think to share:

1. After Cycle #9 we did a brain + spinal MRI and the results were, for the first time (for these parts of my body), positive. And by positive I do not mean neutral, or no change. Rather, some of the lesions in my vertebrae have actually reduced in size. This is an important development as the spine in particular has been resistant to other treatments that I have done in the past. In fact, the last spinal MRI that I did, showed a couple of new, small lesions in my vertebrae, and that was after starting CVD. So actually seeing an improvement was very good. My next spinal MRIs are in early September and I will be sure to update with those results.
2. I have taken to swimming and biking on a stationary bike, and both are progressing nicely. I am getting stronger and my stamina is also increasing.
3. After Cycle #8 I did a CT that covered my pelvis, abdomen, chest, head, and neck- essentially everything from mid-femur and above. My doctor was extremely pleased as there were multiple sites that had clearly improved on the scans and no real worrisome developments elsewhere. For a tumour in bone to show improvement means the improvement has to be relatively significant as measuring size change in bones is not particularly easy or straightforward. My next CT scan is in early October, after Cycle #12, and I will be sure to update with those results.
4. My veins have become progressively more difficult for my nurses to find. I am told that this is a perfectly normal reaction to extended chemotherapy and there is very little that we, as patients, can do about it. The only real advice that I've received is to make sure that I am well hydrated before I come to the hospital, which is just good advice in general, so I try to follow that. Because veins have become an issue, I've asked that they leave the needle in my arm so that when I go for Day 2, they don't need to stick me again. It is sort of annoying leaving it in but they wrap it up and it's less of a hassle than watching a nurse try and find, and stick, a vein.
5. Surprisingly, my platelets are higher than when I started. I believe they are currently around 140K which also means that I have resumed taking Lovenox. I do not have any known blood clots but since I have had two major ones in the past, the doctors feel that resuming taking it is a good idea.

As I review this it appears that some of this is quite important and should have been shared in a more timely manner and I will be sure to keep this up more actively so that I don't miss anything important going forward.

Overall the plan is to keep going until CVD stops working or until it is compromising my health in other ways and should be ceased.

Cycle #5: Day 3

Fatigue kicked-in at around 2pm. Was still able to attend a family get-together but was definitely feeling the effects of the treatment. BP seemed to be normal. There was some nausea but it was adequately managed by the meds.

Cycle #5: Days 1 & 2

Received treatment for Cycle #5. Generally uneventful. Some slight burning when the dacarbazine was being administered but the addition of saline and a heating blanket on my arm took care of the discomfort. The CVD was ready quite quickly both days but the issue seems to have been the availability of chairs a/o nurses. Waited 2.5 hours Day 1 to be admitted and 45 minutes Day 2 to be admitted.

Cycle #4: Day 20

As I gear-up for Cycle #5 I am a little bit shocked about how well I feel. For the majority of this cycle I have felt strong, no nausea, no vomiting, huge/healthy appetite, and alert. I also still have all my hair. With the exception of the first four days, I have truly not felt like I was in the midst of a chemotherapy regimen. I think that part of this is the prednisone, but I can't imagine it accounts for all of it. Really wonderful. The cough continues to be held at bay by the steroid. The orthostatic hypotension is periodically and unpredictably troublesome, but I'm taking all the steps that I can to minimize it. It has truly been a spectacular couple of weeks. I think the last time that I felt this good was about 9-10 months ago.

Cycle #4: Day 5

As usual, fatigue and elevated blood pressure. No real nausea or vomiting. Nothing much to report.