Monday, March 8, 2010

Feeling better, and some reflections...

Happy Monday, my friends.

First, thanks to those of you who were kind enough to write to check up on me!

I want to emphasize that when I report on feeling crummy, as I did at the end of last week, I am doing so in the interest of faithfully recounting what's going on so that others can learn. I am not complaining -- far from it. I'm glad to be alive and happy to accept the relatively minor side effects of maintenance therapy!

I was thinking about this, and one important notion occurred to me. I have been guilty, to some degree, of viewing the past seven months as the first seven months of maintenance, which is a three years process before I can say I'm through with therapy and (hopefully!) cured.

Instead, I should be viewing this as seven months, already, of disease free life. Had I opted for disease control rather than trying to go for a potentially curative approach, I might have a year or I might have three or I might have five years of remission. Nobody really knows. But seven months is seven months, and it's nothing to sneeze at, and I should be enjoying every day. I think this is a very important message. About 80% of the time, I'm living my life as though I don't have disease (which in fact I don't). The other 20% of the time I have to pop pills, get infusions, deal with side effects, whatever. But in any case, I'm in a group called "progression free survival" or "event free survival." So I should be enjoying every day -- and that's my message to all of you. Enjoy every day!!

For those interested, my chest cold is 98% gone. The thrush is, I *think* gone, and the GI distress is mostly gone although I'm sure I have been wiped clean of helpful digestive tract bacteria so I'm going to continue to pop acidophilus pills for a bit here.

I also wanted to touch briefly on an interview that Parade magazine did with Kathy Giusti of the MMRF. I have nothing but deep, deep respect and gratitude for this woman and her continuing efforts in the fight against this disease. But I have to say, the article was not very uplifting, despite assertions that it was. Among other things, Kathy said that "Myeloma is uniformly fatal." And she continues to focus on her own syngeneic transplant (from an identical twin, which confers the curative benefits of an allogeneic transplant without the risk of graft versus host disease) as being a temporary remission. In the case of the first statement, it's hard to view that as uplifting...I think it's defeatist and at least somewhat misleading. In the second case, I know she wants to maintain a sense of urgency to her efforts and I applaud that -- but I also hope she knows that she's going to be around for a long time.

Anyhow, that's enough rambling for today. Enjoy today, and every day, people!


  1. I would like to get some facts on survival using identical twins marrow transplant. I don't have a twin but it would still be interesting. If... they totally killed your plasma cells and transplanted "clean" identical plasma cells, you should be cured. If not... then I would assume that there is another agent causing the cells to turn into the cancer state! At last Friday's seminar they at least implied that with heavy dose chemo, before the transplant, all your good and bad cells were gone. Thus... the rescue treatment of a transplant. Where am I wrong?

  2. Steven -

    With the proviso that there are divergent points of view on this, here as some notes:

    1. Allogeneic transplants are theoretically curative. The reason being is the transplanted immune system is able to recognize the myeloma and kill it. This is called "graft versus tumor effect." The problem is when GVTE is more serious and the immune system rejects other parts of your body. There's a very high treatment related mortality (at least 20% if not more) from allogeneic transplants. People are experimenting with "mini allo" transplants in an effort to get the benefits of GVTE without graft versus host disease.

    2. The unique advantage of an identical twin is that the immune system is perfectly matched and there is (effectively) no chance of the host rejecting the graft or vice versa. Yet still, the clean immune system gets rid of the Myeloma.

    3. With heavy dose chemo, call it 99.9% of the cells are gone. The problem is the .1%. Eliminating the one progenitor cell is like finding the needle in the proverbial haystack. The essence of the treatment option I chose was to do two transplants in a row, so I've got the 99.9% of cells gone the first time, and then 99.9% of the cells gone the next time. Then I'm on three years of maintenance to keep the cells dying, essentially. The hope is that I've gotten the progenitor cell by the end of that time.

    4. As noted, other people disagree with this protocol. They would counsel to wait on the transplant until you've exhausted your non-transplant options. It all depends on whether or not you want to roll the dice and hope for a cure, versus saving dry powder and attempting to control the disease instead.

  3. It would seem from the many blogs I've read and the many pieces of medical journalistic data that have crossed my eyes (literally in some cases!) that the biggest challenge in overcoming this disease is the singularly diverse presentation it makes - it appears to be as individual as a fingerprint. It is my position that research must focus on the commonalities of the cancer, then on the anomalies, to find the "key" that breaks the code. This is not to say that Dr. BB's aggressive stance is not valuable or that another Dr.'s protocol won't be effective; what is horrible for all, from what I read in the Guisti article, is that so much is still unknown as to cure/containment - too much like wandering in the desert with a bottle of nitroglycerin, searching for a glass of water so one can not stagger.
    What is great about your blog and your raw delivery is that readers can use the information to better inform themselves - and family - on choices... and with all due respect to Guisti's perspective, unless you take an aggressive stance at the outset, do you then limit those choices?

  4. I'm new to all this myeloma stuff, my partner was diagnosed on Feb 1 2010. From my point of view the scariest thing is not knowing if the best treatment is being given. It seems in the UK that there is a set pattern that everyone follows and that other countries have different ways of dealing with it. Who is right? Hopefully everyone!

  5. I also read Kathy Giusti’s article in Parade magazine. I had exactly the same reaction as you. Her statement of “"Myeloma is uniformly fatal” really rubbed me the wrong way. I understand her notification and what is driving her to say what she is saying. It is her job. There is more to do here, we can not relax as for majority of people there is no cure. However, one needs to be sensitive to the delivery of such message. For a newly diagnosed patient, who might not even know what is exactly their type of the disease, such a message can be extremely discouraging as to some extent misleading.

  6. I had the same reaction to the Parade article. Perhaps she should have said that Myeloma "was" uniformly fatal. Fact is that life expectancy with the new treatments has improved and no one really knows how much more it will improve as patients continue to live longer. The best advice I give to newly diagnosed patients is the same advice I got when I was diagnosed 3 years ago....don't go on the internet. The information is usually out of date, reads like a Stephen King novel, and does not reflect the impact of new treatements. BTW: I understand and concur with your sentiment regarding the fact that you are OK most of the time. If there is such a thing as a lucky cancer patient, I am one.

  7. I was told of a woman in NYC who was 18 years out from a syngeneic transplant with no evidence of MM. I was told this a year or 2 ago, so it's 20 now if she is still OK. If I had to bet either way,
    I'd bet she's cured. To Steven: the reason a syngeneic works when an auto alone doesn't is that the patient's immune system has stopped recognizing the myeloma as a bad thing. It
    has learned to accept it where a donor's immune system knows it's not supposed to be there so still has the possibility of eradicating it whether that donor is a twin or not.

  8. Don't forget that Guitsi has a very distinct agenda, i.e., research interest and funding... and... we all benefit from that agenda.

  9. Nicolas Nickelby,
    I have been thinking so much about you - wanted to say Happy New Year to you and your beautiful family.

    I had faith in your score (van dyk family 1, cancer 0).

    I will call you when i am back in the US in May.

    Lots of love, strength and peace,
    Fajita Jackson

  10. I didn't find the Parade article uplifting either, quite the opposite actually, which is why I felt it was an important read. Not so much for those with myeloma who are educated on this disease and the improved/improving treatment options and outcomes, but for the general public and those who have never heard of myeloma. (In fact, I posted the same article a few days ago to our blog because most of our traffic comes from "general public", some of which still confuse myeloma with melanoma-- I wish I were joking about that.)

    I'm glad your cold is finally going away. Phil has one that lingered for a few weeks and it's finally getting better after some antibiotics. Probiotics are the awesomest though... we always have them in our fridge. Keep at it!

    Hugs to you guys.