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12 Dec |
My concerns reaffirmed today Edie, My MCL, Treatments
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When I was first diagnosed with MCL, I pretty much read just about everything I could get my hands on, I attended various conferences, and I talked to anyone who would listen.
One of the most important lessons I learned, and which I’ve mentioned numerous times before was
No one cares more about you than you.
But in addition to that, I learned to fear the drug Doxorubicin, AKA Adriamycin, Doxil, Hydroxydoxorubicin, or more affectionately the Red Devil.
Besides being a deadly chemical, as is the case with most chemotherapy drugs, it is one of the few chemotherapy drugs known to cause permanent heart damage.
I even heard Dr. Sandra Horning, a noted Stanford lymphoma specialist, state at the first lymphoma conference I attended in LA, there was no evidence Doxorubicin provided any added benefit to chemotherapy protocols.
This was music to my ears, since Doxorubicin is very common in most lymphoma treatment protocols.
And even though Dr. Horning has since changed her tune [which my skepticism of the US health care system makes me believe she was pressured to do so], and I have seen one favorable study using Doxorubicin, I remain skeptical, and refuse to even consider its use for me, should the need for treatment present itself.
So it was with great trepidation when I heard Edie’s protocol also included Doxorubicin or Doxil (the liposomal version). I expressed my concerns to her, but in the end it was her decision. She has since received 5 (30 mg/m2) doses to date.
But now, after this phase II study, conducted in France on 482 patients, I believe I have been vindicated in my belief, as has Dr. Horning, that Doxorubicin is not a necessary addition to any chemotherapy protocol.
This study clearly shows Velcade + Dexamethasone results in twice the complete remission (CR) and very good partial remission (VGPR) rates of the same protocol + Doxorubicin prior to transplant, and a better than 30% improvement after a transplant.
Hopefully now, Edie will also stop taking this particular drug. Who knows, it might even improve the neuropathy!
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7 Dec |
Another rainy Friday Edie, Treatments
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Well here it is, the second rainy Friday in a row, and that means no bike ride.
I did plan on going to the gym shortly, but after receiving an email from a friend this AM, I realized it’s been just about a month since I last posted anything on Edie, so today seems like the perfect opportunity to do just that.
So far, all of Edie’s numbers, i.e. blood counts, kidney tests, protein analysis, etc. have been stable, thanks to Millennium Pharmaceuticals wonder drug Velcade.
Of course nothing comes without a price, and the resulting side effect of peripheral neuropathy, has caused her some degree of discomfort. So she skipped the last cycle of Velcade and Doxil, to see if the neuropathy would improve.
I didn’t really expect the neuropathy to improve much, which it didn’t, but I was guardedly hopeful (remember I am a contrarian/pessimist). Instead her creatinine level increased slightly, which neither of us wanted to see.
So this afternoon, she is resuming the Velcade, but at a lower dose, to attempt to keep the myeloma in check, without increasing the neuropathy.
In the interim, she revisited the transplant doctor to discuss the possibility of an autologous stem cell transplant (ASCT), to help extend the duration and depth of the remission.
The doctor was encouraging, she would be a candidate for an ASCT, but did express some reservations about her kidney function. The problem being the reduced kidney function could cause some complications which would not easily be addressed at the City of Hope in Duarte, CA. Instead she would be referred to the Fred Hutchinson Cancer Research Center in Seattle, if that was necessary.
So that’s about it. For the most part, the news is good, and we’re still planning on going to New Zealand the end of March. Just hoping the ASCT won’t interfere with those plans, or we may have to move the trip up a month or two.
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27 Jan |
Surprise From My Oncologist My MCL, Treatments
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The results of my latest blood work on Wednesday, and subsequent exam revealed essentially no changes in my condition. Lymphocytes had actually come down slightly, hemoglobin was back above 13, and spleen and liver were unchanged. Platelets were up, but my doctor didn’t seem to think that was anything unusual. I’ll wait till my next CBC to see if it is a trend or not.
As we usually do, we talked about possible treatments when the time comes. My doctor went through some new information he had learned, and to my surprise indicated that in indolent lymphoma’s the trend was to try Rituxan alone as an initial treatment. That had been my choice of treatment for awhile now, but when we had talked about it previously, he indicated it may not be the best approach. Even two other experts, I sometimes consult with in France and the UK, indicated that while it would likely do no harm, they weren’t of the opinion that it would do any good either, and recommended against it.
Still, when the time comes, that is likely the route I will choose, unless of course I change my mind.
Another surprise was my doctor offered the opportunity to begin treatment now. I thought about if for a moment and declined. I’m still feeling fine, and didn’t see the point in beginning now. I will wait till absolute lymphocytes are over 100K (currently at 80K), or platelets start to drop before deciding. So right now I have a little while to go.
My doctors departure to TX is not for about two more months, so I don’t have to make a final decision about a new oncologist just yet. I had pretty much decided on one doctor, because I was told he was more into research, but the one nurse in the office, who I think very highly of, and who told me that doctor was more research oriented, recommended I go with one of the other two in the office. So now I’m not sure what I want to do. At least I have a little longer to decide.
I only wish that was my only problem.