Saturday, May 30, 2009

Let's Get One Thing Straight

A number of people have suggested that my decision not to return to Arkansas, but to continue with further treatment here in Denver, might reflect that I'm quitting. NOT SO. There is no quit in me. Have we (you) forgotten the 15 vertebral compression fractures, 2 back surgeries, prostate cancer, stem cell transplant, etc? It took one year to find an effective chemo regime. We have made a variety of very difficult decisions regarding my treatment, including the decision to go to Arkansas for treatment. So why have I decided not to return?

The initial plan was to go to Arkansas for a double auto (my own cells) transplant. My cancer took this opportunity to get very aggressive and the initial plan had to be scuttled for much more aggressive treatment, concluding with the heaviest chemo regime one can get for this disease (the super beam plus--9 chemos in high dose). That was only marginally successful and the IGGs are now on the rise again. Because the super beam can only be given to a patient once in his lifetime, due to the risk of pulmonary disease, another auto transplant is not viable at this time. The only other type of transplant is a mini allo (using one of brother's stem cells). I am very fortunate that I have brothers that match the 10 important antigens. But there are increased risks with this type of transplant because you are being given someone else's stem cells--not unlike any other organ transplant. In addition, for this type of transplant to be effective, my cancer levels must be considerably lower than they are now. That will have to be accomplished through some drug regime. Since I have had most of the potentially effective chemo drugs, finding a new effective drug is the first major challenge.

In this regard I do not perceive much difference between Barlogie or Rifkin as the treating doctor. While they both know what drugs are currently available as well as clinical trials that are being conducted, unfortunately neither knows for sure whether any of those drugs will work on me. Hit or miss/trial and error? Call it what you will, I'll continue to be the guinea pig. In addition, Barlogie isn't very fond of mini allo transplants and one time told me "We don't do those." In fact, they do, but not frequently. On the other hand, Rifkin has just completed a clinical trial of mini allo transplants, the results of which are not yet published, but the inside word being that all patients are doing well at two years post transplant. So, this guinea pig thinks he will do best in his own home environment, with his family and friends around, and the chance to be living some semblance of life while going through this next phase of treatment. In that regard, I've already attended my first CTLA officer meeting, and am considering whether I can conduct a few half day mediations starting in late June or July. Life must go on.

A long winded way of saying there is no giving up in me. I still have too much to do. And with that, I think I'll take a spin on my bike.
Love,
Dan

5 comments:

Ingrid said...

Thanks, for this eloquent explanation.
If only it gave you also some relieve, bursting out this kind of illustrating protest.
I heard myself in it very well. Getting tougher with the explanations, as nobody seems to understand your decision, as if everybody was forgetting all the steps you have done by now.

While you undergo all those treatments, nobody of all of us, takes the time to read again this blog, starting the first day.
Every word printed here is printed in your mind, on your body, in your soul, in your brain, no detail is forgotten by you, many details probably have never even been mentioned by you,....

What calms me most, is reading the energy in your explanation, your madness, as it means: YES you continue to fight.

Good for you !!! The war is not over yet, the battles show up with no interruptions, no rest.

I love the warrior DAN, I am with you, you are the leader, and we all follow you, let's see what this new day brings in.

Did the rush finally get better ???
May I hug you strongly? Or still softly ???

Ingrid

Brother Ted said...

Thanks for the update. There sure is a lot of something behind this last posting. You must be getting your energy back. Have you started swimming again? I am glad to hear that you are back doing your work with the CTLA. The insurance companies and doctors put out some very misleading advertisements during the last legislative session concerning the ability of victims to receive compensation when the docs goof up. Oh, have those tomato plants been set out yet? Love Ted

tim's wife said...

No one can understand how very difficult it is to be away from home and your support system when
you need them the most unless they have been there. As far as an allo. There is a guy on the acor myeloma listserv who had a full allo at UAMS years ago and still no sign of MM. Allos have gotten less risky than they were and there are many people who seem to be "cured" from them. Best to you and yours from Jersey.

John said...

Your reasoning makes perfect sense. Ultimately, all of us must fight the MM on our own terms. Choosing to do so at home with the strength of your support group at hand is an assertive decision.

Leif said...

Dan: Just saw John Sadwith's piece in Trial Talk about visiting you in Arkansas. Sounds like a great moment. Re your last post, well said, I'm glad you are back, and it seems like the best and most logical choice to me too.
You are in my thoughts and prayers; I wear a Livestrong bracelet that I got when my father had surgery for prostate cancer five years ago. He is doing great--no more cancer--and doesn't need that support so much. So now I wear it for you, and expect the same result.
Good luck re each step (by step)and I'll be sending positive energy your way, especially when I'm out for a spin on my bike.
Leif Garrison