[Suzanne]

I had both as part of the induction & consolidation treatment that put me in remission almost 6 years ago so they are not new. I did not have any particular problems-nothing that wasn’t taken care of very quicky. I remember a blood infection and a small fungal in the lung when my counts were nil-but they were not on-going and with the meds they used even then for nausea etc I was not uncomfortable during the process. Good luck

[Suzanne]

I agree Jack that you have to research and make the decisions for yourself. Thanks for the info and good luck to you and your wife. I sincerely hope you get to a place where she can do the cord transplant and that it is a total success!

[Suzanne]

PS, yes they were supoposed to have looked for a MUD but said if they found one I would have to go someplace else like the Hutch for that process because of my age

[Suzanne]

I suspect that what an institution says is better is influenced by the treatments they have decided to pursue in their research and have available. Just like most things in our disease-too little is known. My understanding is that Hopkins believes that the Haplo is a better route then the cord blood. They put it after the matched non related. Both they and Fred Hutchinson have been using it in studies with more kinds of cancer then MDS and are envolved in joint studies. From the study results they have given me,it initially did not do as well with MDS as with some other types of cancers but they are now isolating studies to just MDS patients and the statistics they are giving me is 30-40% chance of prolonged remission with a possibility for cure(they have not been doing it long enough or with enough patients to be sure how many of the people that are 3-5 years out are not going to relapse.) And a 10-20 % chance I will die from host VRS graft complications. In between is ending up exactly were I am when I start because the transplant does not engraft to cronic Host VRS graft that could cause a lot of on going problems.
Those statisctics are actually better then my chances were of prolonged remission 5 plus years ago when I went for induction and consolidation. Statistically it should not have worked-and if it did I should have relapsed within months so anything with a better then 30% chance gets consideration from me. They are not urging me to do anything as long as my quality of life is good. This is also a “mini” with the lighter chemo that does less damage and won’t leave me with no bone marrow if there is no engraftment.
neither I or my docs are absolutely sure where we are going. As the say, I am a totla wild card-they don’t know ver much about our disease but I have not fitinto the patterns of the little they do know

[Suzanne]

I am glad you are at a center. I don’t know them all-just the ones I hear most about here & from my docs -MD Anderson, Sloan Kettering in NY and of course Fred Hutchinson in Wasington state. I do remember how it felt that I should be doing something earlier in the game. My docs did try one trial but we spent a lot of wait and watch time just like we are doing now. In some ways that is harder then being involved in something that might help. Each center does seem to have their own programs & directions in the research they are doing . When Hopkins did not have anything, I went to apply for a trial at NIH but at that point they found I had progressed to AML There really wasn’t any choice except the chemo. My one sibling was not a match. Now we will be looking at Revlimid, maybe one of the other drugs and maybe the Mini Haplo transplant with one of my children. Hopkins and the Hutch are doing a study together on that with some promising results after trying it in several kinds of cancer. At first I said no way-but after I really looked at the pros and cons and the process I just might try it if I get in trouble again. They have already tested all my children just in case we decide to go that direction. I am sure it must be frustrating to need blood every week and make you feel like the situation is urgent. I had more trouble with the blasts increasing and the white count. We are all so different.

[Suzanne]

Warren, Go to one of the centers of excellence-preferably one that isn’t too far from where you live if possible and see someone that is working on our type of disease every day. Please also don’t be discouraged. There are lots of possible treatments and trials. I was where you are 6 years ago. Went to a center of excellence and here I am. At that time there were no approved treatments. When my blasts went to 75% I had induction chemo and consolidation and I have had over 5 years of disease free living. For the past 9 months they have been seeing some chromosome changes that might mean trouble down the road-but so far all my counts have stayed in the normal range. So no treatments at all yet and I continue to enjoy the days that I never thought I would have when I was first diagnosed. I truly believe that without my team at Johns Hopkins I would not be here. I hope you have some of the same good luck!

[Suzanne]

Neil, I was glad to see your name with a comment. I was just wondering yesterday how you were doing and was geting close to sending a personal message out to you to check on you.

[Suzanne]

My doc said he was putting my criteria into the bone marrow pool.I have not heard that there were any results. And I still have a lot of questions to ask. Why they would use a child if they found a better match in the bone marrow pool-or if they would- but it seems to me I remember him saying when I was first diagnosed and this was mentioned as an alternative if we got to a place “where our back was against the wall” almost 5 years ago that they were finding the risk about the same . I will let you know when he gives me an answer now as I weigh whether to even try this.

[Suzanne]

thanks to you both! I will try your suggestions. I think a lot of people have not found the new location of this forum-or very few people have gone the mini route. I see the spamers had no trouble following us to the new location. The administrator needs to check out “SpongeBob”

[Suzanne]

Thank you Jack. I know the outlines of the process-pretty much as you have described. I am looking for people who have actually done it-just for feed back on the actual experience.I don’t think there are many.
I am not quite sure how I stand right now. The 5q- and another minor chromosome change showed up in a routine BMB in July which caused alarms about whether I might be relapsing. So far , if anything my counts that were already ok have improved so I don’t seem to be in immediate danger beyond that later BMB’s showed an increase in the % of defective cells-which indicated that they weren’t going to die or be killed off as a defective cell should be-but no blasts and no leukemia cells. I have been so far outside what usually happens to people that have the type of disease that I originally had that it makes it even harder to know what should be done if I have a problem. Because of the long remission they are comparing me to relapse after transplant and maybe somewhat secondary MDS because I don’t fit any known guidelines.
As far as I can tell the mini has less chance of killing you outright-or causing as much damage – because the chemo isn’t as strong but because all your original marrow is not killed the possibility of really bad GVH is much higher and probably the chance that it will not work and or or relapse is higher the a full transplant.

[Suzanne]

I had no trouble getting reregistered after I went to the main site because the forum had been down so long and found the new connection. But do watch for the difference in zero and the letter o in your password and I and the number 1 I originally had trouble with that until I marked my notes which were which in the password.

[Suzanne]

thanks Neil, I have seen the discussions about the cord blood tranplants on this forum. So far my goal has been to delay the high risk procedures and keep my quality of life as long as possible. It has worked well for me and in the meantime they have come up with new treatments and gotten better at all the transplant types.Hopkins still preferrs that actual bone marrow transplant to the stem cell procedure. There is always more to learn. My main Dr. is in on the vaccine research and becoming known internationally but I have a team that watch my case-all specializing in different treatment areas. I am still feeling totally normal-there is very little sign of trouble in my counts-just the indication in the bone marrow that my immune system is not recognizing the defective cells and killing them off. Hope you are feeling stronger every day.

[Suzanne]

Don’t tell me you can’t get in trouble being a Lover! So glad to know you are home and to see your cheerful spirit in your words. Be Good!

[Suzanne]

Neil, thinking of you. some of us old-timers with this disease have to hang around to cause trouble-not that you have ever done that!

[Suzanne]

Zoe Most of the “before” is in my signature line. I think it is hard to talk about “Typical” with the family of MDS diseases because there is so much they don’t know-especially why individuals exhibit so differently and react to treatments so differently. The disease I originally had -RAEB transformed to AML with a 5Q-, normally does not respond well to Chemo and when it does relapse is usually pretty quick-like within the first year. I responded with a full remission to the MDS, the AML and the 5q- and I stayed in remission for 4 years-They don’t enough patients like that So now the closest thing they have to compare me with to get an idea (statistically) about whatto try &what might work is patients who relapse a long time after a transplant and maybe patients with secondary MDS (coming after chemo for another cancer) Right now the plan is to try the Revlimid to see if we can buy time-but that is usually done with on-set MDS and a category of the diseas that is called 5Q- and I don’t fit that-so they have no idea what chance it has of working and if so for how long. There are other medications and trials I could try to buy time but my Dr. says that eventually I am going to have to make the decision whether to try the mini bone marrow. Hope that answers your question.

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