your honest opinion on SCT

[geebeebee]

Pierre, I’ll leave one more response, because I’m going to have to declare myself done after reading Patti’s response…both John and Patti have offended Marsha and myself before on posts ripping the SCT, and questioning the logic of getting one.

First, as I’ve stated every time, opposed to what Patti said, I’m not “all for transplants”. In fact, unlike Patti and John, I’ve gone out of my way to not make a recommendation one way or another, as every situation isn’t black or white, as they seem to think. I would have given anything for my Mom not to have to have had it. And I would challenge Patti and John to name all the people who have had SCTs that haven’t made it….I really can’t think of more than two or three, and I’ve been on the board for almost two years. I don’t want to argue about this, I really don’t, but I’m not sure these comments are even correct. Anyone who had been on this board for any amount of time knows that we have tragedies all the time, and most are from people who have not had SCTs. I’m not saying they should have had them, but to talk to these guys, you would think that SCT is the cause of death for more people than MDS.

I’m not even saying there aren’t natural remedies that work, but when MDS is spiraling downward, I don’t believe there is enough evidence to warrant putting it all in nature’s hands…at this point in time. It may happen someday, but there isn’t an absolute that I know of.

Patti, I’m glad you and John are doing well, and I hope it continues. But to tell someone that they really shouldn’t do it, I think, is irresponsible, and has never been the tone of this board. It is for support and sharing information, not telling someone they would be nuts to go a certain way.

I’m signing off on this discussion, but don’t hesitate to write to my e-mail, Pierre, or anyone else for that matter, if I can give you any information I have that may help.

Take care,

Greg

[patti]

Greg,

I think that you read my tone (I won’t speak for John, he’s a big boy) very wrong. I have never berated anyone for getting a transplant. That was their choice to make.

Yes, there have been more people who have passed from MDS than from transplants. What I said was, how many people who’ve had transplants that are on this list are still actually alive? I think there’s two or three. There have been as many others who aren’t still alive and didn’t make it beyond a year (some less). There aren’t very many because not as many people get transplants as those that do chemo, etc.

I didn’t say you were “all for transplants” so please don’t put words in my mouth. Pierre asked for an opinion. I gave him mine. I also qualified my answer by saying that if a person ended up with AML (as Jim did) then a transplant was probably the best way to go.

I also think that those who are going through typing/matching for a potential future need are very wise. If one can do this even if they don’t need the transplant now, that just makes good sense to me. Because with this disease, one never knows where it will take you.

So, before you lambast those of us who have a differing opinion than yours (or your non-opinion) please reread what we wrote in the first place. There was no “talking down to” tone intended.

patti

[pierre]

Well, one thing’s for sure–I seem to have touched off old disagreements by raising this subject. I think it’s natural that people would be so eager to defend their decision and their rationale given the life-or-death nature of the stakes in this game.

And I do say “game”–I think the role played by luck in all of this is often understated…I too am made a little uncomfortable by repeated invocations of God (Greg, you and I seem to agree temperamentally on this point); more than anything, I have been a little disconcerted by well-meaning friends of ours who “congratulate” my mother on her good news (e.g., getting into remission). Does that mean that bad news is worthy of reproach? I don’t see any moral dimension to this disease one way or another. On being called “brave” my mother goes so far as to say that’s it not difficult being brave when you are given no other choice…

At any rate, back to the topic at hand. I actually considered, in my first post, brutally asking who on this board has had long-term success with SCT and who has died from it (or from post-SCT relapse). This does seem to be on the back of a lot of people’s minds and I was wondering if it could be instructive to bring it out into the open. Maybe not. But the allegation that “most people” on this board who’ve gone ahead with a transplant aren’t around anymore is an alarming one and important enough to be straightened out and confirmed with facts, it seems to me.

I would also like to make it clear (in case it wasn’t already) that my mother’s MDS is pretty much as serious as it can get–secondary, with chromosome abnormalities, and at the AML stage. This isn’t a situation where we have the luxury of trying out different options.

Thanks for all of your input; I’ve already learned a lot from it.

[geebeebee]

Patti, second paragraph in your first reply begins “So while I understand you’re all for transplants,”. It’s right there.

Did I misunderstand what you meant there? If I did, I do apologize, but it seemed like you were saying I was really pushing the transplant, when I clearly am not, or certainly not intending to.

[Dennis]

I participate in a couple of other boards that are specifically aimed at SCT. So, I know a lot of survivors. In my own case, the docs tell me that I have a 24% chance of mortality from the SCT — inversely, that would be a 76% chance of survival. However, they won’t do the transplant until I need it — in other words, they don’t want to do it just because I have MDS, but should the MDS get to the point where its out of control, then . . .

Right now, I’m muddling through using vidaza, relativly symptom free and keeping pretty much the same quality of life as before. Should it get to the point where they can’t maintain that any more then I will go the transplant route. In the meantime, maybe they’ll find some other, less drastic cure. One can hope.

D

[Suzanne]

Hey guys! The reality is that there is no clear answer as to what might give an individual the best chances for the most quality time to remain on this earth if they have this disease.

I have been on this forum a long time and my gut feeling is that we have probably lost about the same number of people who tried the transplant as those that tried other pretty serious treatments. You have to factor in that a good number of people weren’t eligible for a transplant when they traveled a different path of treatment.And some did not have the time or the contacts with knowledgable docs to have any choices.Stem cell instead of a full marrow tranplant is quite new as are the mini and the midi tranplants. There are also people who are trying other new treatments that they have no way of knowing whether they could be a “cure “or give significant disease free time or not because the patients surviving in remission are only a year or two out from the treatment. The same goes for the stem, midi and mini. I have certainly known people who did a transplant in what looked like the best scenario-matched sibling- and either had the bone marrow not engraft or their own old cells come back. We also have some that made it through and are feeling better every day but have no quarantee they won’t relapse. The same goes for a few of us who tried heavy chemo and experimental drugs to get into remission.Some of us made it throughand others either never made it into remission or relapsed.
Then there are those who are using drugs -not with a lot of chance to get into remission but to keep the disease under control and live with it hoping that something better will come along and keeping as high a quality to their days as possible in the meantime. And those who have elected to try natural things to support themselves pretty much the same way-to improve the quality and lengh of time. And in each case some have done better then anyone predicted and in others the disease won.
If we are lucky and under the care of a center of excellence or doctors that are envolved with research each of us will have choices. Now that some drugs have been approved even people with just a knowledgeable Hemo will have some choices.
As far as I can tell the reason that they say that a Transplant is the only cure is that they do have patients that had a transplant that are disease free more then five-maybe 10 years out and they don’t have patients that tried anything else in that category. However none of the treatments we are trying now were there five years ago. And they are working on new ones in many places. (at a talk I went to at Hopkins recently they were talking about turning genetic signals on and off in cells and very early work in vaccines to prevent relapse.)
Anyway this is the long way of saying there is no right answer. You are taking chances with your life no matter which way you go. Each person has to look at the choices they have as an individual and do the best they can to make the decision that they feel is the best one for them given all the pros and cons their doctors give and their families come up with after researching and talking to people on this forum. There are no right or wrong decision and no way of knowing what would have happened if you had chosen another route.

[seekay]

This website may be of interest to you. I copied and pasted an excerpt below.

http://www.canceraction.org.gg/index2.htm

Beating the Odds

Home
BEATING THE ODDS
CANCER: A PATIENT’S GUIDE

Knowledge is power. If you want to fight cancer and win, or, at the least, gain more time, however grievous your condition, the best thing you can do is learn how to help yourself, in co-operation with your physician. The strategies outlined here are complementary to mainstream cancer treatment, but essential if you wish to change your long term prognosis. It is not sufficient treatment just to kill cancer cells. To help prevent recurrence and slow cancer progress, it is necessary to radically change the underlying conditions which may have enabled the cancer to flourish initially. Do not be pessimistic if you are told you carry the genes for your particular cancer; “Everything is 100% genetic and 100% environmental.” Cancer genes can be switched off in the right biochemical environment. (However, please note that very few U.K. physicians know very much about the strong scientific evidence for nutritional therapies in cancer and, in their ignorance, are likely to prove discouraging. The medical community are beginning to concede that nutrition can be cancer preventive. Indeed, the World Cancer Research Fund recently issued some consensus guidelines on this front. But the logical and increasingly well-documented conclusion that nutrition might also be therapeutic has not yet dawned on the average U.K. oncologist and doctor. You may even encounter hostility). If it is at all feasible, for the first few months after your diagnosis, drop everything and concentrate on yourself, and your health. This will give your body a chance to rebuild the necessary resources that will improve your chances of a good recovery.

If you have been told that nothing more can be done for you, that your treatment is just “palliative”, or have been given a very short time to live, please refer to In Extremis.

[patti]

Suzanne,

That was so well said. I think as many people as there are with MDS, there are that many opinions about what is right and wrong for treatment. Ultimately, each must make their own decision based on the information they have at hand on that day, month, year. I cannot tell you how many times I’ve wondered, “what if we’d done vidaza?” What if we’d done “X?” I think everyone questions their decision to a certain extent wondering what would have happened otherwise. And the answer is, no one knows what would have happened if we’d done something different. That’s what makes this decision so hard.

Greg, I did not do a good job of being clear. I’m sorry about that. I was mainly trying to say that Pierre asked for opinions and I gave him mine, as did others. And I’m not sure it’s right for one of us to tell him he should take someone elses opinion lightly because we disagree with that person. Sorry that wasn’t clearer.

I think anyone put in the position of being told they’ve transformed to AML is stuck with deciding do they give in to the weeks they are told they have to live or do they take the risk of a transplant hoping to add time to their lives and that it might just work? I think most of us would say we’d take that risk. If you’re faced with weeks vs. the possibility of a cure most people would think that’s a worthy risk. I don’t disagree on that point. My contention is there are so many doctors that push transplant when someone isn’t at that spot (AML) and other options exist (whether that doctor wants to believe there are options or not). I have very little trust of the medical community after what we’ve been through this past two years.

In the end, the decision Pierre’s family must make is difficult but I actually think it’s instructive and wise to get the opinions he asked for.

Patti

[shirlsgirl]

Hi Greg,

I admire your calm and articulate responses to this discussion. I have followed your mom’s story since I started this board and I was very heartbroken when she passed.

You have absolutely not given any indication that you were “all for transplants” (which WAS previously stated). I have no idea why you were attacked like that!!! Your input was thoughtful and first-hand and very helpful.

Thanks for detailing what your mom went through. Wishing you and your family all the best.

Jody

[eve]

ok ————-everyone take a deep breath

eve

[g-masews]

I’ve tried to read all I can find on chromosomes and how they relate to a transplant. Nothing suggests that more abnormalities or which abnormalities affect the outcome of the transplant (probably because they are ridding the body of the defective chromosomes, or something like that)but I certainly think the number of abnormalities, and which ones, would factor a great deal into the decision process. The severity of the MDS goes up with the number of abnormalities and certain ones, the 7th and a tripling of the 8th, for instance, generally mean a greater chance of going into leukemia and a more adverse prognosis. I haven’t read of anyone who just has the -5q abnormality seeking out a transplant too soon (and I could be wrong) as their prognosis is somewhat better than someone with complex abnormalities. Even with the trisomy 8 and several other abnormalities, my husband still isn’t ready to go the transplant route. It’s all a dice throw, I guess. Since being diagnosed and finding this forum last May, there have only been two patients that I’ve noticed going through the SCT and neither of them made it, unfortunatly. Only time will be the ultimate decider of what we do.

[pierre]

g-masews…not to put too fine a point on it, but besides Greg’s mom, who else did not make it?

[franm]

Hi:

Wish I knew what do to or how to handle my husband. He is 74..cannot have a transplant because of his age and other factors with his health. He was dx with MDS over a year ago. He has been going to this Onc. since last December. She has eeen taking blood from him every month and last month she did a BMB on him. He had several abnormal chromosomes as well as Trisony 8. His blasts was 29, which the doc said that 30 was Leukemia.

She started Jim on 7 days a week of 100mg. of Vidaza with 3 weeks rest. This should go on for 6 cycles, then another BMB and she will see.

Jim has been very week since he started the Vidaza and now that he isn’t taking any for 3 weeks he still is weak and tired, especially his legs. He can hardly walk and sleeps quite a bit. He starts his 2nd treatment June 15th and I am scared because the Onc. will be on vacation when he starts and I think he will need transfusions.

Any ideas will be appreciated.

Thanks

Fran

[eve]

there must be someone else covering for your doctor while she is on vacation who can authorize a tx if jim needs one – and in the worst case jim can always go to the emergency room of your local hospital – they will check his blood counts and if the hgb is low they can order a tx

also – is jim getting procrit in between his treatments – this might help his hgb

good luck
eve

[franm]

No, he is not getting procrit but one good thing is that he has blood test every week and he has his cemo at the hospital. They will check his blood test and if he needs tx he will get it there…thank God we are close to the hospital.

Thanks for your concern.

Fran

[Author]

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