Wednesday, May 13, 2009

Might as well jump (?)

I don’t usually quote Van Halen songs in this blog. But then again I don’t usually run across a nurse who says deciding whether to have a stem cell transplant is like deciding whether to jump out of a burning building.

That’s what Theresa Brown, R.N., does today in a blog on The New York Times website. The title of her post is sobering: “When Cancer Treatment Might Kill You.” She tells the story of a young multiple myeloma patient who had an allogenic stem cell transplant and is now on a ventilator, having survived four surgeries in the last eight days following a bowel perforation. Doctors have removed his colon. This is all the result of Graft vs. Host Disease, aka GvHD.

What’s interesting here is the feeling that the nurses have about transplants: Mixed at best.

“It’s toug
h, and among ourselves there’s a strong feeling of “I would never get an allo,” because we know how bad it can be,” writes Brown.

Nonetheless, they don't think it's entirely hopeless.

“On my floor we have a book, an old-fashioned photo album filled with pictures of the transplant patients who are still alive. To many of the nurses on this floor, the specific details of these patients’ lives are irrelevant; all we care about is that they’re alive. They talk, eat, see their grandchildren, nurture their kids, love their spouses and enjoy their friends. They fill the place in the world that is uniquely theirs.

“For me, the book of transplant patients has a magical feeling. I sample its treasures by looking at a few photographs and then I put it away. I don’t need to read the whole book; just knowing it exists is enough. 'All these people survived,' I think. 'All these people are alive because of the work we do.' ”

I find that medical personnel speaking candidly can give you the best idea of what something is really like, or of what to avoid, what to do, what limits to accept, when to push harder. My oncologist, for example, absolutely recommends against staying in the hospital if it can possibly be avoided. The reason: too many germs. “If you have to go, bring your own pillow,” she told me once. “You don’t know what’s been living in the one they give you.”

Transfusion nurses have given me knowing looks indicating that I didn’t really need a transfusion. An ER doc, during the height of my October 2007 hemolytic crisis, told me that my instincts were right, that I was better off living with low hemoglobin until chemotherapy two days later than risking what I might pick up in a transfusion of non-irradiated blood. This went against the textbook, given that my hemoglobin was 6.6, but it was the voice of experience talking.

The point is, when medical people speak honestly, I listen. So I was quite interested in Brown’s conclusions about transplants.

“I compare his choice with deciding whether to jump from a burning building. Staying in the building means certain death. But if you jump, you might break both legs a
nd take months to heal or sustain injuries serious enough that the complications eventually kill you. But you would be alive when you hit the ground. Maybe it will only buy you a few more rough years. But you might just walk away and live.

“When it comes down to cancer patients making the choice, a few decide to stay in the building. They opt for the quicker, surer death of cancer. Others, for different reasons, don’t have the option of a transplant. But even knowing the risks, I’m pretty sure I would make the leap, endure the free-fall, feel the impact, and hope to be one of the lucky ones who survives to walk back into the life that is waiting for me.”

That is, perhaps, the best metaphor I have run across when it comes to the transplant choice.

I know people who have jumped. Some survived and walked away, others managed with the equivalent of a broken leg. Some didn’t make it, or made it but faced difficult, often life-threatening challenges later on. Right now, one of them, a patient with aggressive CLL who sailed through transplant, is dealing w
ith severe GvHD of the gut.

“This has easily been the hardest three weeks of our lives,” writes his wife. “Not knowing the plan or what was in store was and is so hard for us. . . . (He) isn't out of the woods yet by far.”

This patient was a textbook success until things started to go wrong. His case, not unlike the patient described in Brown's post, are potent reminders. They tell us, to take the metaphor in a slightly different direction, that we patients are playing with fire whenever we make a major decision, and especially when we decide to undergo transplant.

So, what will you do when the building starts to burn?

I will jump, but probably only when the flames get as close as I can stand them.


Anonymous said...

Well, did you do your R+FFP, or not?

David Arenson said...

I am in the midst of doing it and will report on the results when I'm done.

Deb Light said...

I know it is a scary decision at best.May God be with you David.

Thoughts & Prayers,
Deb Light

Anonymous said...

DOR BioPharma, Inc. is a biopharmaceutical company that develops products to treat life-threatening side effects of cancer treatments and serious gastrointestinal diseases, and provides vaccines for certain bioterrorism agents. However, most investors are focused on just one of the company's drugs, orBec, which is set to enroll its Phase 3 trial very soon, according to regulatory filings with the Securities and Exchange Commission.

DOR BioPharma's orBec is a first-of-its-kind two-tablet system designed to combat upper and lower GI GVHD. This debilitating and painful disease is common among immunocompromised cancer patients receiving allogeneic stem cell or bone marrow transplants. Unlike like organ transplants, in GVHD donor cells begin to attack the patient's body, and can cause anorexia, nausea, vomiting and diarrhea, and even death if left untreated.

Two prior randomized, double-blinded, placebo-controlled Phase 2 and 3 clinical trials demonstrate that orBec provides clinically meaningful outcomes when compared with the current standard of care. Recently, the company reached an agreement with the FDA on the design of a confirmatory, pivotal Phase 3 trial in collaboration with Numoda Corporation. And enrollment into the trial is expected to occur in the second half of 2009.

DOR BioPharma also signed a collaboration and supply agreement with Sigma-Tau for the commercialization of orBec. Under this agreement, DOR BioPharma will receive $1 million upon the enrollment of the first patient in the Phase 3 trial, along with additional milestone payments that could total $10 million. Sigma-Tau will also pay a 35% royalty on net sales as well as commercialization expenses, including launch activities.

Currently, there are no approved products to treat GI GVHD, while there are more than 10,000 allogeneic bone marrow and stem cell transplantations that occur each year in the U.S. The company estimated that approximately 50% of this population would be eligible to use its drug, which equates to a large market potential if approved.

Anonymous said...

Great post, David! I'm not sure any of us know if we truly would jump or not at last resort. I was in a plane crash at the age of 17. The pilot gave us a 50/50 chance of surviving a belly landing with a wing on fire. We had to dump fuel for over an hour before we could crash land. In that hour, I went from sheer panic to the most unbelievable peace I have known since that moment. I decided not to stay in "crash position" with the pillow over my head and I watched out the window as we came down to the runway to hit metal on concrete. All I can say is that no one was screaming and all was calm. Obviously this was a personal experience that has forever altered my view on life. Perhaps it is why I am such a fighter for quality vs quantity of life. Whatever the reason, in your scenario, I will not jump but I will go back into the fire and help all who want to jump make it to the window.

Jenny Lou

Anonymous said...

Thanks - this post was a great one. What a dilemma - and it's one my partner and I will possibly face in the future. If it were me, I would give the transplant a go but like you, would wait until I couldn't stand the flames anymore. Life is risky and some of us get thrown things that are beyond "the norm" and sometimes risks have to be taken to get to where you need to go. Without taking risks when necessary, the outcome can be worse. You never know, you may never have to go through with it - they are researching drugs all the time and who knows what they may discover within the next few months.
My best to you David, I read your posts often and my knowledge of CLL has grown considerably because of you. Thank you so much.

Theresa Brown said...

Hi Dave,
I just ran across this blog post. Glad my column was so meaninggul to you. I like your decision to jump, but only when the flames are so close you can't stand it. Words of wisdom.

All my best for your continued struggle with CLL,
Theresa Brown