your honest opinion on SCT

[patti]

Pierre,

There was a very sweet lady named Lola who was in her 50’s. I can’t remember if she had a BMT or SCT. She was just getting ready to leave Seattle at the 4 month mark, post transplant and went for one last BMB. They discovered 4 months post-transplant that her MDS was back and much worse than it was before her transplant. She died a short while later. If memory serves me, it was a couple of months later. I followed her story closely as she was a christian and I was praying for her. She had a site on caringbridge. I don’t know how to access it so you can read about her travels through the transplant. Maybe someone else here will know how you can tap into her story on caringbridge.

And to be fair, there are at least a few people here who have had a transplant that are still with us and seem to be doing fairly well.

G-masews – you are so very right. It is a dice throw.

patti

[pierre]

Thanks Patti. Of course the big question is whether getting the transplant is what made the MDS come back so strongly or if it would have come back even without a transplant.

[Jerry]

Pierre ….

It is Lola Mattfeld and here is the last site I had for her …

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=lolamattfeld

Jerry

[uno grasshopper]

Quote:

Originally posted by pierre:
Thanks Patti. Of course the big question is whether getting the transplant is what made the MDS come back so strongly or if it would have come back even without a transplant.

You’re right, Pierre, that we don’t know if the transplant made the MDS come back or not, but the one thing that is clear is that Lola’s transplant didn’t stop her MDS from coming back.

While I’m personally in favor of more natural, less harsh treatments, I also realize that AML secondary to previous cancer treatments are very tough nuts to crack, and not everyone wants to do natural treatments. So, if you’re really leaning toward BMT or SCT, I imagine any one of the centers that perform transplants should be able to get you in touch with some of their transplant survivors–particularly survivors of the type of leukemia your mom has, AML. There is the ACOR group for AML survivors. You can read some of their stories here http://leukemia.acor.org/aml-stories.html If you scroll down that page, the bottom half has a list a short blurb on some who did not survive after transplants. Perhaps if you joined the group, you could even touch bases with them for more current updates and information on new protocols. Of course, none of those stories can tell you what you mom’s outcome will be, but at least you can see what others have experienced.

Good luck to you and your mom,

Marla

[uno grasshopper]

Pierre, I was just looking over some of the stories on the ACOR list. Apparently, you can click on to the names of the patients/survivors and it’ll take you to their websites. I suggest checking them because I happened to stumble across one listed on the “survivor’s” side yet her website shows that she has since passed away due to complications of her transplant. It was Leslie Kuzima http://www.geocities.com/kuizema/aml.htm Also, some of the websites will give you links to other leukemia websites with more stories to read.

Take care,

Marla

[g-masews]

jerry, thank you for Lola’s name, I would not have remembered it. Wasn’t there also a Bill and Mary going through a transplant last June when he died suddenly of GVHD? I see in the archives that he was beginning the process last June, but can’t find the follow-up. I only bring these two names up because they were on the forum at the time I first found you all and we were having to make our decision at that time, so they kind of stuck in my mind. Can I ask another question (two, actually)? What kind of symptoms does one have if the blasts are increasing or a person is going into leukemia? I know they can only know the percentage of blasts by doing a BMB, but are there also blasts in the peripheral blood? I hear people say it can turn to leukemia in a matter of weeks, but how can you know if you don’t have biopsies that often, and how often does the average patient get one done? I guess I should have made this a new thread, but thanks.

[patti]

G-masews,

I’m not sure what the symptoms are if the person is going into leukemia but I know that they look for blasts in the peripheral blood as a sign that leukemia is present. The few times that mom’s white cells spiked they immediately did smears to see if she had blasts in her peripheral blood. They said they won’t do another biopsy on mom because of her platelets being so low but they would know by the blasts in the her peripheral blood. And I just remembered that a friend of mine who just transformed from CMML to AML last week told me that she had started feeling very nauseas and didn’t know why. Maybe that’s one symptom.

Thanks, Jerry. Was hoping someone had Lola’s caringbridge site.

Pierre, I was also thinking that maybe joining the leukemia website forum for AML would be helpful. There are a ton of people who’ve had tranplants and are still around to tell about it. They had AML. I’m not sure if your mom has AML or is still MDS but that might also give you some helpful info.

Patti

[pierre]

Thanks Patti…I’ve already been consulting that forum for a while, though I haven’t posted there yet.

My mother has MDS that has progressed to AML.

[lynette]

Hi Pierre,
I’m afraid that I was one of the memebers who sent congratulatory greetings to you and your Mom. When my Mom achieved remission, one of the NYP docs hugged her and exclaimed “Congratulations”
I was taken aback. After twenty years as a nurse, the only time I recall hearing congratulations was when a child was born. Then I took a step back and realized that the docs were elated because the patient was given a new lease on life–so congratulations were in order. However, in no way does this diminish the anguish that we went through when Mom’s first trial failed. We searched for another plan, another option for hope. So sorry if I offended you, but I now realize that with the word “Congratulations”, is a hope for new life.
Regards,
Lynette

[John in GR]

Dear Greg and anyone else who may have been offended by Patti or my comments “ripping'” the SCT and (God forbid) questioning the logic of getting one. Greg, did you read Pierre’s initial post??????????????? Did you really read my post??
Did you read the part that said that a perfect match was a plus????

Why is it that after Pierre solicitated comments re the SCT I get hammered for giving mine????? Did I hammer you for your opinion??? What is it, the SCT is off limits for criticism??? All I said was ask about survival history. Is that so terrible that you have to be “offended” ??????????????? Is that a bad question to ask your doctor and facility??? Isn’t that exactly the question Pierre is posing???

You seem to think that when I’m giving my opinion, I’m trying to cram it down your throat, so I’ll state my opinion on that one time. Hopefully you will understand it and find someone else to go after, if that is your predisposition.

I BELIEVE EVERYONE SHOULD DO HIS OWN RESEARCH, GATHER INFO REGARDING ALL TREATMENTS, CONVENTIONAL NUTRITIONAL AND ALTERNATIVE. EVERY SITUATION IS UNIQUE. HE MUST THEN MAKE THE DIFFICULT DECISION OF HOW TO PROCEED. IF HE OR SHE IS MARRIED THE SPOUSE SHOULD SHARE IN THE DECISION. ONCE HE DECIDES HE SHOULD PRESS FORWARD AND NOT LOOK BACK. REGARDLESS OF HIS CHOICE, I WISH HIM WELL. I DO NOT PRESUME TO TELL ANYONE WHAT HE SHOULD DO; IT’S NOT MY PLACE.

If you need further clarification, I’ll do my best. Hopefully, you’ll quit misinterpreting my comments in the future.

Just because I’m still alive does not mean I have been immune from difficulty. For the past year I have struggled with something called Sweet’s Syndrome, an outbreak of nasty sores accompanied by a drop in reds that has on occasion required blood tx. It may or may not be related to the MDS. With the Sweet’s as well as with MDS I am most interested in nonharmful approaches, although at this time I am using prednisone (a harmful drug) to control it. That’s my approach. In hopes of finding a better approach I am travelling to Portland Oregon in about a week to meet with a Chinese herbalist who specializes in blood disorders. IS THAT OK WITH YOU GREG, OR AM I OFFENDING YOU?????

DISGUSTED IN GRAND RAPIDS

[pierre]

WOAH Lynette!!

Are you kidding me? You did not offend me in the least. If anything you’re my forum hero–I owe a lot of my mother’s success to your posts. I hope you realize that.

The truth is (if I can drop the false modesty for a second) that *I* think I deserve some congratulations (along with everybody else who’s been caring for my mother), and that’s how I interpreted your post. In other words, I think it makes sense for us caregivers to pat each other on the back every now and then. It’s a little different for the patients themselves since they’re fighting for their lives and “congratulations” doesn’t quite seem to capture the nature of their struggle.

Please let me know that we’re clear about this!

[lynette]

Hi Pierre,
Thanks for your kind words!! Don’t be modest about your role in your Mom’s care. I see first hand that patients who have involved family members have better hospital stays as well as better outcomes!! Three cheers for family and caregivers!
Best regards,
Lynette

[Jimbob]

I whole heartedly agree. Without informed and caring caregivers most patients would not do well. My wife would like to put this behind us but we know that I would not have survived had she not fought so hard on my behalf and just plain “been there” for me when things were at their worst. Some times things were so bad that I was unable to comprehend what was going on. I have no memory of the very worst but Beth had to live it. Some of the doctors still say that it is because of the strength she and my children gave to me that I was able to survive.
Jim

[Marsha]

Jim,
I agree with the great caregivers we have. My SO (whom I have been with for 14 years now) has been wonderful and is still wonderful. There is nothing written that could take the place of his love and care for me. We are not married; and that is OK, he has proven his love for me in so many ways. I truly don’t know what I would do. Last weekend, we were traveling from WI to Ne to visit my donor; and I got a flu bug (vomiting and diarrhea) he drove 200 miles back home and took care of me all the way. I did end up in the hospital because of dehydration. But without him I honestly don’t know how I would have made it back. I am better now; and have rescheduled my visit with donor for the 4th of July week. Aren’t our caregivers special people too?? I think Dick was more disappointed that we didn’t succeed in our visit than me. He was looking forward to it. My best wishes to all who are struggling in whatever stage your in.

Marsha

[DonUK]

Hi Pierre,

Just because you have a perfect match doesn’t mean there won’t be complications.

My fiancee had a Reduced intensity conditioning transplant. She was neutropenic for 70 days when the docs decided to go with the transplant as she had aspergillosis.

The transplany grafted well, but Karen had a CMV reactivation which moved to her lungs and ultimately took her.

She was 45.

Just wanted to give a balanced view here.

Best of luck,
Don

[Author]

Posts