Chemotherapy maintenance – end of cycle 3
This week marked the end of my third three-week cycle of medication following my bone marrow transplant. In general, this is probably the least newsworthy update I’ve posted in a long time – not much has changed since my last posting – which I suppose is what you would expect in maintenance mode. My lab results are good and have been stable as I enter into the 4th maintenance cycle. Status quo, boring, same-old same-old.
My energy levels are up and I have resumed almost all of my “normal” lifestyle activities (visiting with family, eating in restaurants, shopping in stores, more physically active). Yes: I still take a power nap every day, I am very careful when ordering food in restaurants, I don’t eat anything from buffet lines or salad bars, I listen closely for the sound of people hacking and coughing near me when out in crowds, I do not go outdoors when the temps are low and dress in many layers when venturing out in any winter weather, I am extremely cautious on snow and ice to avoid falling (weakened bones). But, other than those types of precautions, things are getting back to normal.
NEWS FROM MY CLINIC VISIT
The chemotherapy team (Dr. J and Tara) reports that the compiled results from the experimental chemotherapy study in which I participated were very good. They are really excited about what they have seen so far. My results are recorded as “near complete remission”, which means there are trace amounts of the disease in my urine. One patient did reach “complete remission”. Tara still says that I am their “model” patient. I consider myself fortunate to have been able to participate in the study.
MEDICATION CHANGES
If you review my previous postings you will recall that in maintenance Dr J decided to discontinue one (Valcade) of the three drugs in my chemotherapy cocktail in an attempt to minimize the neuropathy in my feet. Even without the Valcade the neuropathy worsened after only two maintenance cycles with just the Revlimid and Decadron drugs, and Dr. J suspected that the Revlimid was also contributing to this problem.
We experimented by discontinuing Revlimid during one week of the third maintenance cycle and saw positive results. As a result Dr J has reduced my Revlimid dosage from 25mg to 15 mg, and dropped my Decadron (steroid) pill frequency from 4 days to 2 days during each cycle. Recent studies have shown that lowering the Revlimid dosage reduces side effects without detrimental clinical affects – so we do not expect these changes to have an impact on my recovery nor the length of time before the disease recurs.
SIDE EFFECTS
Neuropathy – As mentioned above, we have been adjusting medications to minimize this particular side effect. Of the three neuropathy symptoms in my feet – swelling, tingling, numbness – the most noticeable is numbness on the bottoms of my feet. At these new medication levels this is not as bad as it had been, and I consider the current level of discomfort to be tolerable.
Bladder / prostate issue – No real change here. We’re watching this closely and I am meeting with the urology docs to monitor it and decide on future intervention.
Food, eating, weight loss – I think we can remove this item from future “side effects” lists. My appetite is definitely back and my weight is up to 148 pounds… which is about where I would like it to be. Now I’m wondering if I need to worry about the steroids propelling me past my ideal weight and back up to the 167 pounds that I reached under chemotherapy last summer? (sigh – I guess you just cannot win. What did Clemens and Bonds do when they took their vitamins?)
General disposition and chemo brain – I think we can also remove this item from future “side effects” lists. I believe that I am back to the “the old me”. Perhaps the only lingering problem is focusing on a single topic for long periods (hours), but this is dramatically better than how I felt back in November and December.
NEXT STEPS
As usual, I have clinic appointments and lab/blood work scheduled every 3 weeks (each cycle) for the next few months. I also have inoculations scheduled for the 12 month, 14 month, and 24 month anniversaries of my October transplant (Remember that I lost my childhood defenses when undergoing chemo – I have to have TB, polio, measles, mumps, chicken pox, tetanus… shots all over again. Until then, I am highly susceptible to those diseases)
NOTE – I’m never sure how often people visit my web site for changes/updates, and I wanted to advise you that postings will become less frequent here on the web site. I usually publish a new posting each time we meet with the clinical staff. At one time that was every three weeks, then in cycles 2-3 of maintenance it changed to every 6 weeks, and now Dr J has extended clinic visits to every 9 weeks.
That’s the latest news from Hamburg.
-larry