very hard decison to make cord blood transplant

[bianca1216jt]

Hi i am the father of a 16 month son who was found to have mds with monosomy 7 in 4/2008. blasts were 11%.Went for 2nd opinon AT SLOAN KETTERING CENTER i was told they were one of the best found on 2nd bone marrow test to have only 5% blasts but 90% of cells to have monosomy 7 were told this made it worse. Started induction chemo and got results today we were told he has remisson no blasts and monosomy 7 showed 1% great news but they went us to go through a gruling second phase of chemo to wipe out system now and prepare for cord blood transplant. No bone marrow match found DOCTORS STATED THIS WAS A GREAT TIME TO START BASED ON THE FACT HE IS IN FULL REMISSON. I HAVE MY DOUBTS as we all should this is a trial and expramental procedure. currently he is home doing great running, playing etc. doctors tell me if i use the wait and see game it will come back for sure and will be much stronger and harder to treat. has anyone else gone through this and what choices have they made i know i should not say this but i think based on the cost of this transplant over $500,000 they would have some intrest in doing this and making a name for themselves if this new procedure works they tell me 60% i have never saw more then 30% Talked about on any other forums. thanks any advice will truly help

[poppyshope]

My Father was at Sloan and they are a fabulous institution. My father also did two rounds of indutive chemo but he did not get a remission for his transplant. They did say the same thing about my dad and I was writing about it tonight so it is kind of fresh in my mind- can you call MD Anderson and have them give a phone consult by faxing your medical records? I did that with my dad and Sloan was very accomodating- how about St Jude Children’s hospital too- just a thought! My prayer go out to you to see you through this rough time-children are resiliant i am glad to hear he is running and playing- God Bless you, Jen

[bianca1216jt]

Thanks for that helpfull info. I am sorry for the loss of your dad sounds like you loved him very much. Very tough to make the right decison wish i had a cystal ball. God bless you james

[Harold P]

Hi,
It was my understanding that Monosomy 7 was the result of prior chemo, radiation, or being around benzene. That can’t be the case for your young child. Did you ask the doctor if they know how he could have gotten that kind of chromosome damage? My husband has MDS secondary because of prior chemo treatments he had for Non Hodgkin’s Lymphoma in 1998. He also has monosomy 7 as well as other chromosome damage. Get more than one opinion & make sure you feel it is the right course of treatment. There are lots of links for MDS to check out. One of them is https://www.mds-foundation.org/ & http://www.aamds.org, & you can call 1-800-747-2820 to speak to someone to get free educational material sent to you. God bless your little boy & we will be praying for him & your family.

Sincerely,
Pete & Sandy Peterson

[jaxem]

Harold
1st time I’ve heard 2ndary cancer caused mono 7 but . . . I know my wife has it & it came from chemo (adriamycin) breast cancer treatment.
bianca
mono 7 is worst but don’t lose hope. The director of cord transplant is Juliet Barker who had spent 9 years at Univ MN (Fairview Hosp). She’s very good but I had some issues with the support people there with some of their work-up tests. That’s why we switched to dealing directly with Fairview. My wife is actually receiving treatment there right now & we are from NJ. Cord transplants ARE NOT trial or experimental. I don’t know where you got that from. Sloan has probably done well over 100 cord transplants by now. Also, if a procedure is “experimental” there will be no insurance reimbursement. Also, have you attempted to seek a donor from the international registry assuming there are no siblings? And try not to look at $’s. One treatment of a chemo called clofarabine (given over 5 days) cost $250,000.

[SimonChai]

Hello everyone. I see there are some folks who are contemplating cord blood transplants and I wanted to offer any bit of help I could in making decisions. I had a double-cord transplant in April 06 at Fred Hutch for chemo-induced MDS. It wasn’t the expanded cell trial, just a double-cord, following Univ of Minnesota’s protocol. I was in remission (dealing with lots of GVHD issues but in pretty decent shape) until just recently. I’m on medical leave doing Vidaza (my second time–it got me to transplant in 06) so I’m on email a lot. If I can help in any way, let me know. All the best to everyone. I used to participate in this list before my transplant.

[jaxem]

Ms. Chaitowitz
I remember exchanging comments with you after you had the transplant. I’m sorry to hear that you’re having trouble again. What has happened?

[SimonChai]

Hi, Jack. Yes, I remember you as well. Please call me Simon. Thanks for your email.

Unfortunately, I’ve relapsed. My doctor says I’m on the borderline between MDS/leukemia. The transplant worked well (other than cGVHD) for just over two years and then suddenly the chromosome damage returned to my old immune system–just about two months ago. I had been 100 percent engrafted until then.
Sounds like your wife has been through a lot as well. Horrible diseases we are dealing with!

Simon C.http://schaitowitz.blogspot.com/

[Harold P]

Hi Ms. Simon,
My husband is not a good candidate for a cord or SCT due to othe medical problems. The University of MN doctor said he could do a work up & see if he was eligible for a cord transplant but he would only have a 20 – 30% have surving the transplant. Due to those odds he decided against a work up at this time. What was your original diagnosis. My husband was diagnosed with RARS, secondary, high risk because of prior chemo in 1998 for Non Hodgkin’s Lymphoma. He has lots of chromosome damage including monosomy 7. What made you decide on the cord transplant? Since you have relapsed in a short period of time are you sorry you went through that grueling transplant? Do you have a journal somewhere so I can read your story?

I am very sorry you have relapsed, & I will pray for you that the Vidaza works for you. Please keep a positive attitude & be strong.

Sincerely,
Sandy

[SimonChai]

Hi, Sandy. Thanks for your email and your kind words. I chose the double cord blood transplant because I couldn’t find a bone marrow donor and the doctors said I would have a year or less to live otherwise. My original diagnosis was MDS-RAEB with loss of chromosome damage including loss of chromosome 7 and inversion of #3 (I also got the MDS from previous chemo.) No, I’m not sorry I did the transplant even though it was so difficult. Despite the cGVHD I’ve dealt with for the past two years, I’ve appreciated the time and have been able to work, contribute to causes I care about, and enjoy myself. Yes, I do have a blog; it’s http://schaitowitz.blogspot.com/

Thanks again for your good wishes. I’m sorry that your husand isn’t eligible for the transplant. What sort of treatment is he undergoing?

[MNladyslipper]

bianca,
Try this website:
http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/Ultimate.cgi?action=intro
They have several areas to explore. I have found it to be quite helpful – especially the Blood and Marrow Stem Cell Transplant forum.
Hope this helps.

We are currently at Univ. of MN Fairview, going through chemo regime to get blasts down so my husband can get a double cord blood transplant.

Bev

[jaxem]

Hi, Simon, Sorry to hear about the relapse. Keep Fighting!!
Hi, Sandy,
Good speaking with you again, Bev, since we met in MN,
My wife continues to fight this evil disease after being diagnosed 2 2/3rd years ago. She is RAEB with 7% blasts in her marrow. Therefore, cords are out of the equation but she still wants a “cure”. We were turned down for their Natural Killer Cell haplo at MN Fairview because of her fragile condition. Can you believe it took 6 weeks of tests for them to determine that? We are continuing with treatment at Temple Univ., her “home” facility. They have been approved to do haplo’s per the Johns Hopkins/Hutch protocol and are awaiting final approval by Temple’s board which should take about 6 weeks. They know her best and feel that she can withstand the procedure.

[SimonChai]

Hi, Jack. I don’t know if I responded to your last comment to me. Thanks so much for cheering me on!

I have two sets of questions:

* I wanted to ask about your wife’s MDS. As you may remember, I also got MDS from breast cancer chemo. I’m working on an article on this topic for my blog. Do you mind my asking a few questions? I would love to know if the doctors know which chemo caused the MDS. I also would like to know if you or she know whether her doctor reported it to the drug company. I have a suspicion that more women are developing MDS than is currently known.
* Can you tell me more about the “Natural Killer Cello haplo” that you mentioned?

Thank you!

[DrQsWife]

Hi,

If anyone is interested MD Anderson is doing some trials (very early stages) on NK (natural killer) cells found in cord blood. The study stood out to me because they are using the expanded cord in persons who don’t qualify for a SCT. The website is http://www.mdanderson.org/topics/bmtatmda/ and the article along with others can be found on the right hand side.

I believe that they have started taking patients (if not they may be soon), I saw a explanation for staff here on the SCT floor where I am currently located

Just thought I would pass along this information in case anyone is interested.

Desiree

[MNladyslipper]

My husband is now in remission from the MDS and the AML, but now has ALL!! He was in the hospital the whole month of Aug. to get the AML into remission. He was in for 19 day to treat the ALL. He has two more weeks as outpatient. The treatment is totally different. He will have a bmb next Thursday. Hopefully we will then proceed to transplant. They still have two cords that match 100%.

Sandy, it is my understanding that anyone undergoing transplant is given about a 33% chance of survival. However without it, Barry was only given a few weeks to a few months with this new diagnosis. We will go for that 33%. I have seen a lot of success stories here at the Hope Lodge in Mpls.

Jack, so sorry to hear about Rose. I keep you in my prayers.

Bev

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