I just don't get it.

[niol]

Maybe I am missing something in all of the postings but it seems like for the most part many Docs do not want to do SCT or BMT until a person has full blown AML. By then advancing age over when they first contacted MDS, additional medical problems, and blood issues going from MDS to AML are all against them. Hence, the chance of getting cured is depleted and risk of death is increased.
My wife is about to start a third round of REV at 5mg after her platelets dropped to 12 before they could get them reversed with 3 PTF. They platelets have rebounded over the last three weeks to 65 but now her white & red cells are dropping again.
I know the transplants are high risk but if you had a child and did not get them medical care until they where nearly dead they would lock you up. Yet is seems like they just try this and try that and see what happens. Maybe MDS is more difficult to treat or we understand so little about MDS that it drives me up the wall.

My wife is only 56YO and has not one other health issue outside of MDS. I do not want to loose her because I did not make sure she got the best possible treatment.

I guess I will let them try one more time with the REV and then push for a BMT. Then if things are even a little worse push that the local Doctor refer her to IU Med Center and Dr. Cripe.

To each and everyone of you who have shared your life or the life of a loved one who suffers from MDS I thank you greatly. By sharing you have educated me, provided insight to what could happen, questions to ask, things to watch out for, and most of all keep the faith.

God Bless Each Of You
Ed

[SandyB]

Good Afternoon Ed:

I am confused about waiting to get to Dr. Cripe at Indiana University. He is excellent and we drive for 5 hours each way to see him.

It to me would seem to be advantageous to see him as soon as you can.

[niol]

Well, in my confused state I may have miss stated the fact that I the Dr. she seeing here in Fort Wayne seems to be laying back. When we first set up to see Dr. Cripe they had her in to see him within five days of us contacting them.

Tonight I get home from work and my wife says the Doctor’s nurse called and said to start her Rev again. I told her to hang on. That the Doctor said two weeks ago when she started it would be 5mg over the 10mg she had been taking. All she has is about 8 days of 10mg tablets. So we will wait until morning to call.

Sadly I think the problem is while this group of Doctors has seen maybe a couple hundred MDS people with MDS they have only seen one other person like my wife. Nearly all of their other pat. have cancer or other major issues. He told us early on my wife was only the second person they have seen at in their mid 50s with no other health issues. Sadly, the other lady they had seen passed away about two years ago and never got a chance to be put on Rev.

I am not scared about the medical world as I have seen way too much of it with seven back operations, having my neck rebuilt, serveal rounds of having kidney stones removed by operation, and colon section because of a birth defect that took them (including Mayo Clinic) seven years to find. The only point I have been around and know sadly first hand how things can get screwed up even though people are trying their best. The medical world has us humans in it and hence is not perfect.

I guess my point is if there is only “one” or “two” cures why don’t they take people like my wife and start down that road. I know the there are major risks that have to be discussed and understood but would it not be far better then putting MDS on a holding pattern or even remission knowing pretty well that the MDS will return.

I guess being from an engineering field I just believe in fixing things so they last and not patching them up so they work for a while. Then when they break again we will patch them up again.

That is not what my wife wants as she is getting depressed over the idea that they may screw around with treatments until it reaches a point that she would no longer be able to tolerate a SCT.

With thoughts and prayers to all of you who fight MDS or support someone that has MDS.

Ed

[J.claire]

Dear Ed, I have only been learning about all this for two months, yet I share you confusion and disillusionment with the medical professionals. On the day I was told my diagnosis the hemo told me that I could only be cured by a BMT and scheduled an appt. with a “Bone marrow transplant doctor” at Dana-Farber on Boston. The first thing this BMT DR told me was that I was not likely to ever have a BMT. I don’t want a BMT, obviously, I don’t ever want to hear MDS again, but all this confusion by the medical people…. In particular I was really bothered by their smirky grins when I talked about using vitamins, diet, exercise, etc… to help fight the mds. They smiled down at me like I was stupid, and said something about how none of it could hurt me… I must add, that mostly I have been treated with kindness,etc., and I like to be positive, but something in what you said really struck a cord with me. I wish you and your wife to find the answers you need, and at least, thank goodness, we have this forum.

[willie]

Ed My wife was about the same age as yours when she was diagnosed with MDS and no other health problems. She was told that the only potential cure was a SCT. She did not want to delay and had her transplant within 5 months of diagnosis. Hang in there, you both have a long way to go.
Willie

[Alice S]

Hi Ed.
I know how you feel! My mom was 61 when diagnosed, she is otherwise healthy. We think she may have had the condition for more than a year before being diag because she never went to the doc or had a blood test, so we will never know. She has been transfusion dependendant from the start. Her first doc was not proactive at all, talked about SCT but never really did anything. Now she has a haemetologist and a search is on for a donor (no family match here) and she is trying out EPO.

However what I did want to tell you is that in the begining it was all systems go for a SCT. However once we were informed of all the pros, cons and risks she decided to wait and see if her MDS RA would progress before doing anything as she was not happy with a 50/50 survival rate. Not when she was still healthy. Since BMB in July 2006 she now knows that she is one of the unlucky 20% and now will eventually have to start chemo and have a BMT or SCT. The scales have tipped the risks are high either way. It was a shock for my father and it took me three weeks before he could actually talk to my mother and face the facts. BMT are being done on older patients so there is still hop.

But she had a good 18months and still feels very good even with 10% blasts and low platelets.

MDS is very very complicated, in, South Africa there are only about 120 patients out of a population of 47 million and each patient reacts differently even more so than with cancer. (Two in laws had cancer, so I know) and it feels as not enough is being done, but I think progress has been made but it’s slow getting out to the patients and we have to scratch around in the dark.

Take control of the situation and ask questions, we pay doctors for their time so expect them to make time to answers questions honestly or at least justify their decisions. I know it can be depressing for your wife, I phone my mom almost daily from Sweden just to check on her and check out every thing the doc says and does, I even forward publications on treatments that I find on the internet that is relevant to my moms treatment. It helps – I’m not a doctor but have a knack with medical issues and my mom trusts me. Fortunately her doctor does not mind. She actually took my moms new diagnosis harder than we did.

Will think of you and pray that you will find doctors who you can trust to do the ‘right’ thing for your wife.

Take care, Alice

[Frankie]

Ed…
14 years ago when I was first diagnosed with MDS and over 50 years old, they gave me percentages….they said that I had a 70% chance of dying if I had a BMT. They just didn’t do them for those people over 50.
Carl Sagan the, famous astro physicist, had 3 of them…to no avail.
I know a lot has changed since then (they also said I would be dead in 2 or 3 years) but I am wondering if they are still feeling the same way about people over 50 having a BMT.

Frankie

[niol]

Thank all of you replying. Willie, how long ago did your wife have the SCT? Plus any other details you care to share.

I have looked at the risks and of course the final decission will be 100% my wife’s as she will be putting her life on the line. As for me, if I was walking in the shoes I would soon roll the dice with a SCT then play games with something that will follow me and darn well overtake me. But that is just me.

Here is the kicker though. It seems like every few months a new approach with meds is coming around so do you roll the dice on the SCT or hope a new drug comes along that can CURE the MDS.

Dr. Cripe told us during our first visit that if Rev did not work then it was a SCT. That he WOULD NOT use any of her family’s SC. I should have asked him but did not as to why. My belief is since they do not know what the real trigger to MDS that at some time in the future gene could trigger it again if the SC matched up too close.

While I have only posted a couple of times I want all of you know I read nearly every post here. It saddens me greatly to read how people enjoying their golden years are hit with MDS. Or fighting some other illness and doing pretty good only to have MDS add to their health issues. I wish I had the money or brainpower to figure out a cure to this but sadly I don’t.

God bless all of you and for those of you that offer your insight, support, and friendship I admire you so deeply. If you ever wonder what God had in mind for you is to do the very thing you are doing here. Giving many of us hope, support, and understanding. That is one thing all the money in the world could not buy.

Take care and we will keep in touch.

Ed

[J.claire]

Dear Ed,
I thought you might want to read this study by Dr. Corey Cutler. It is from 2004, but it seems like it is the one that started the doctors thinking differently about BMT and when it is the best strategy. This is one link I found: http://www.bloodjournal.org/cgi/content/…urcetype=HWC IT but also there are summaries of it like this one: http://www.cancerpage.com/news/article.asp?id=7274 or others that are similar. I am one of those people who needs to read and read before things sink in, and this particular study helped me to understand some things I was confused about. Maybe it will help you and your wife. Sincerely, J.Claire

[niol]

I read both both of them and found some interesting information. It appears right now my wife is not to the point of the SCT based on research but if her MDS advances at all that she consider it.

If I understand what I read if you wait until it is full blown cancer that the outlook is not as good as getting it done before.

I see MDS as having several roads of treatment to travel. Sadly there are no roadmaps that tells a person which road is the road for them to travel.

Thank you again for the inforamation. Take care and God Bless.

Ed

[Alice S]

Hi Ed
Read the sites as well, it confirms what I suspected based on what the docs have said so far. My mom did not want to risk dying from a SCT with only MDS RA but now that blasts are at 10% she knows that she doesn’t have a choice- eventually. She cannot have chemo without a trannsplant as she only has 5% functioning marrow! Amazing that she is doing so well. It’s easier when you have less roads to choose from.
We will just have to learn as much as possible along the way. One thing thought on the positive side. My family lives oneday at a time and cherishes every sunrise and sunset, every month is a month longer with each other and we take nothing for granted- and that has enriched our lives.
God bless and c u around here on the forum.
Alice

[J.claire]

Dear Ed and Alice, I’m glad those studies were helpful. I hope Neil reads them too because I would like to hear his opinion about this stuff.

[KWJ]

I am confused too! So many posts say that once you get AML the docs want to do the SCT or you have many other alternatives, but teh docs here have told my Dad that there is nothing left to do for him. I just do not understand. I try to have faith that if there was something the Hutch would have tried it.

[willie]

Ed Her PSCT was on 7-21-05 with a release from the SCCA at the end of October 05 at 99.5% transplanted. Let me know what is of particular concern for you and I will try to answer. I obviously am not a doctor but she had gut GvHD while in Seattle and we could not find it in Feb 06. I think the slight GvHD she had was keeping the MDS from returning and when she beat it the 1/2% turned to 70% in 1 month. This is only my guess. Willie

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