Doctor's email:

[JaniceR]

Here’s an email doctor Goldberg sent. What an amazing doctor to email me back within a couple of hours. Anyway…Any opinions??? If nothing else, it may give someone out there an idea of the options out there.

Hi. I will be sending them a long letter reviewing all of the options we talked about today.

In summary, he has two major choices.

Low intensity therapies to control his disease for some time (maybe a year or two at best). The benefit is low toxicity and outpatient. Since he is tolerating decitibine adding Valproic Acid (also known as depakote) might be reasonable. This combination has been reported by several groups including a recent study in Cancer by the MD Anderson (Houston) group. Low dose melphalan or mylotarg would be other leukemia treatments with non-curative intent if this does not hold the leukemia cells in check.

High intensity treatment designed to cure. But also high risk. One strategy is standard leukemia therapy in the hospital for a month with daunorubicin (or idarubicin) combined with ara-c (cytarabine). This part has a 5-10% death risk. If the leukemia cells are decreased, the next month a mini-allogeneic (donor) transplant could be performed. Based on a recent overview from Europe, about a third of patients with MDS with this strategy are cured, a third relapse quickly, and a third die from complications. So one might shorten ones life with this, but this is the only hope of long term survival.

Unfortunately neither choice is great. So it comes down to where does he want to place his risks versus benefits.

Hopefully this is helpful.

Stuart L. Goldberg, MD

Chief, Division of Leukemia

[pierre]

Hi Janice,

Presumably if your Dad’ s doctor mentions a mini-transplant as a possible option down the road, that means your Dad is in good overall health (leaving aside the MDS). I believe that’s the most important prerequisite for a transplant.

If that’s the case, I would not hesitate one minute. Of course I’m influenced by my mother’s continued good health, which I know is due in no small part to continued good luck…but it seems to me that if there’s any possibility of a cure, you’ve got to go for it, especially since the outcome to the first line of treatment is certain.

All good wishes.

[patti]

Pierre, before you read what I wrote please understand this is in no way suggesting your mom should not have gone forward with a SCT. I’m simply trying to give Janice the two sides I see in making this decision. Absolutely no disrespect is intended. I’m trying to be thought provoking (which is what I think she’s asking for).

My first thought was does your dad feel like this great of a risk is worth potentially cutting his life short? Based on his statistics about the 1/3 splits of success/failure I look at that and say that if we scored 33% on a test, we’d flunk. To me that’s a pretty dismal failure. If his quality of life is good right now is it worth messing with for a “potential” cure which in my mind is such a great risk at his age that it’s not worth it.

Everyone is so different. And it depends which camp your dad falls into. There are those who feel like if there’s any small chance of cure (be it 5%, 10% or whatever) that it’s worth the risk. There are those that feel like those are such dismal statistics that whatever life they’re living right now will be better then spending the last months of their lives sick as a dog and not really living. So it sort of depends on what camp your dad falls into.

For my MIL her desire to live is huge. She has a retarded daughter she’s been caring for for 48yrs and she has always wanted to outlive her for that reason. However, she is also secure in her state with the Lord and has no fear of death. To her chemos/SCT’s are a fast road to death thereby shortening the time with her daughter. So she’s taking what she can, praying for more and doing everything she can naturally to make her time at least healthy despite the MDS.

I share all that just so you can see where your dad falls into. Some people are so strong on fighting to the end they’ll do anything. Your dad will have to determine which of those camps he falls into and go forward. And if we’ve learned anything in 2 1/2yrs it’s whatever decision one makes, SCT or otherwise, you have to go forward and NEVER look back. Doing so will cause one to question everything they’ve done and you have to trust you’re doing what’s right for yourself, given the information you have at the time, and fight for all it’s worth, whatever direction one goes.

I do not envy the decision your dad has to make and in some ways am grateful we weren’t faced with it only because it would have been a very very difficult one.

I hope this all made sense and didn’t sound pessimistic, but instead, thought provoking on how does one make such a big decision like this?

All the best to and you and your dad in whatever decision he makes.

patti

[Jimbob]

Janice,
I mostly agree with Patti, BUT if there is a way to prepare for a SCT by seeing if a compatable donor is available, etc, than I would suggest doing so while learing more about complimentary or alternative forms of treatment. This way you can possibly increase the quality of life as well as possibly prolonging life but also be ready in case ther is a set-back.
Whatever your dad decides to do, though, he will need your family’s support.
Jim

[JaniceR]

Thank you all for your help. I am printing your replies out and giving them to my parents to read, so THEY can make the decision, not me. I appreicate all your input!

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