Tuesday, March 31, 2009

Let the Games Begin!

Today I started the first cycle of DVD-R, which consists of infusions of Doxil, Velcade and dexamethasone, followed later in the evening by Revlimid. Nine hours have passed since the infusions began, and in an hour I must swallow the Revlimid, which I hate (I'm not too fond of Velcade, either; Doxil I've avoided until now because it causes permanent heart damage and is otherwise nasty). Already I can assure you that this chemotherapy is every bit as brutal as I feared it would be (see dex's nastiness).

In each twenty-one day cycle, infusions are given twice a week for two weeks. Revlimid, in capsule form, is taken nightly for fourteen days starting on the day of the first infusion. The third week is a holiday to allow for recovery before starting a new cycle. The holiday can be extended if the lab tests show inadequate recovery. Or if, as in my case, the patient whines a lot.

What makes enduring DVD-R so difficult emotionally is that I don't believe it will work well enough to make the second transplant worthwhile, well enough to postpone my having to play in the End Game. I have already failed Revlimid as a single agent, and my response to Velcade (with Cytoxan in a modified version of a regimen known amazingly as CYBOR-D), although good, was inadequate as a pre-transplant chemotherapy. Even dex, our most reliable, effective weapon, has recently shown signs of weakening, which is one of our worst general prognostic indicators.

Despite the lack of supporting science, I nevertheless have hope (not faith) that after the first cycle I will be surprised by a strong, positive response — getting such an unlikely response is, after all, the point of the attempt — making subsequent cycles easier to bear. I'm not by nature a gambler, but I understand that it helps to feel lucky when playing against long odds....

You know you're in the End Game when your best course of action's chance of succeeding is less than fifty-fifty.


  1. Lon,

    Hope you handle this treatment without too many side effects. I've done a variety of many of the same drugs and usually the odds of success are somewhere around 25-30%. My last treatment of Hyper C-VAD gave no real response. Right now, I'm back on vel/rev/dex and the early results show some response. I'm awaiting approval and matching for an unrelated donor for a mini-allo SCT -- again about 30% chance of positive results; 15% chance of death. Deciding what to do is sometimes very difficult.

    Good luck on this regime. Hopefully it will be the one that breaks through.


  2. What sort of permanent heart damage does Doxil cause? I'm unaware. I took it with Velcade from 1/08 to 9/08 with no problems heartwise.

    I wish you the best, Lon, as you continue to fight this beast. Your blog is amazing! Having been diagnosed two years ago, I am heartened by your eleven years in battle. I am on my sixth different chemo regimen, so I understand the frustration and difficulty in treating such a stubborn and aggressive cancer. Each seems to work for a while, but then the cancer gets around it. However, as long as there are arrows in the quiver, I'll continue to fight.

    All the best,

  3. Thank you for your kind words with respect to my blogging. Here's some information on heart damage and Doxil, which I am glad didn't harm you:

    "The use of DOXIL may lead to cardiac toxicity. Myocardial damage may lead to congestive heart failure and may occur as the total cumulative dose of doxorubicin HCl approaches 550mg/m2

    — Prior use of other anthracyclines or anthracenediones should be included in calculations of total cumulative dose.

    — Cardiac toxicity may also occur at lower cumulative doses (400 mg/m2) in patients with prior mediastinal irradiation or who are receiving concurrent cyclophosphamide therapy"

  4. Lon -- I'll be here on the sidelines sending positive energy for the 50% that on your side to be 100% effective...

  5. You may not be aware but the photo you use on this post comes from here http://mashedpotatoesforbreakfast.blogspot.com/2008/08/caution-chemotherapy.html

  6. Thank you for adding the link to Max's site. Originally, I found the picture in the Google images data base, but almost immediately someone told me his story. I hope everyone visits his site.


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