Rare blood type causing a stumbling block for transplant

[MNladyslipper]

It has been a while since I posted and what a whirlwind we have been through. My husband was diagnosed in late January with MDS RAEBI. The doctors tell us he is very high risk because he has so much chromosome damage (14). They gave him a prognosis of 9-18mos. He started on Revlimid in Feb. It appeared to be working. Then in April he had an attack of diverticulitis. It was resolved by a week long hospital stay on antibiotics. They decided he would need surgery but wanted to wait until he was not in flare up mode. They told us in May he would need the surgery sooner rather than later. He had surgery on May 23rd. He had a week long hospital stay and came home to recuperate, some mild reactions - fever and cellulitis. Five days later I was taken by ambulance to Rochester - Mayo for pain in the abdomen. I was diagnosed with c-diff started on IV's and wait and see. After three days the pain was worse and they decided I needed emergency surgery to see what was up. My colon had ruptured and I had peritonitis! I ended up with a temporary stoma (3-6) months and a 10 day hospital stay. I came home on Wednesday. Then on Friday night, my husband was flown by helicopter to Mayo with severe chest pains. He had discontinued his Revlimid about a week before surgery and had just restarted it on Tuesday, so they thought he had clots in the lungs. When he got to Mayo his hemoglobin was a 6.8 - on Monday it had been 8.5. The good news is there were no clots and no heart problems. They said chemo affects the gut, the skin, and hair follicles. They think the intense pain was the chemo affecting the esophagus and put him on stronger heart burn medicine. They think this was compounded by the low hemoglobin. He was give two units of blood and then discharged the next day.
Long story here - he has a rare blood type because of the antibodies he has developed. Rochester - Mayo has their own blood bank - they only had two units of blood of his type left and we used them Saturday night. His hematologist doesn't want him to come in every week for a CBC any more. He wants him to hang on to as much blood as he can. They will not transfuse by the numbers anymore, but by symptoms. They told him to "listen" to his body. They said this really puts us between a rock and a hard place for transplant, because he will need between 30 & 40 units for transplant. So, what do we do now? He is afraid to listen to his body - he didn't realize last Friday he was so low and doesn't want to go through that again! How do we find more blood? We are afraid the MDS is picking up speed because of all the things that have happened recently. What could have caused such a drastic drop in his hemoglobin? His platelets are now lower than they have ever been 73,000. His white counts are way up over 2. He usually hovers under 1 and his neutrophils are usually around .1 - .3. It is hard to remain positive. Any help would be very much appreciated.

[bluej]

Bev, I too have MDS with multiple chromosone problems. I am 56 yrs. old and am preparing for a BMT as soon as all the pre-testing on me is complete. You mentioned your husband is waiting for a cord transplant. Do you mind sharing what you mean by that? The transplant I am having is called a stem cell transpant. Wonder if there is a difference? I certainly wish you and your husband the best in this situation. Thanks for posting.

Erma

[Neil Cuadra]

Originally Posted by bluej

You mentioned your husband is waiting for a cord transplant. Do you mind sharing what you mean by that? The transplant I am having is called a stem cell transpant. Wonder if there is a difference?

Cord blood transplants use the cells from umbilical cord blood. More often, patients get their transplant cells from bone marrow or circulating blood (their own or from a donor). When the cells come from circulating blood, they call it a "peripheral blood stem cell" (PBSC) transplant.

The principle is the same in each case, but the method of donation is different.

[MNladyslipper]

My husband got the call from The Univ. of MN- Fairview to plan on coming to MPLS on July 21 for testing for one week - outpatient, then induction chemo for about 1 week, providing tests are all good, and then on to transplant. Scary but optimistic! We again asked about a MUD, but they have not been able to find a perfect match, so want to go with double cord blood. He will have his bmb on July 14 th make sure he meets protocol there. Keep your fingers crossed please, and pull out prayers for us too.
Thanks!
Bev

[Ruth Cuadra]

Hi, Bev.

This is great news! Having a battle plan and knowing the schedule gives you and your husband a way to focus. Please let us know how it goes when you get to Minneapolis.

Regards,
Ruth

[MNladyslipper]

We got the results of Barry's bmb this week. The blasts are now between 15 - 20%. So, the transplant is on hold. My guess is they will bring out the big dogs now - azasatine (sp) or decitabine. We are waiting to hear if he will have a weeks worth of treatment and check again or if he will go thru a few regular cycles. He has been on Revlimid. This was not the news we wanted to hear, but I know others have had to face similar roadblocks. We pick ourselves up, dust ourselves off, and hit the road again.

[Ruth Cuadra]

Bev,

This is really hard news to hear. I liken it to being about to grab the golden ring when the merry-go-round just stops turning. But, you're right that you just have to keep on going and look ahead to your next opportunity to grab that ring. I hope your husband's blast count can be brought down quickly so you don't have to wait long.

Regards,
Ruth

[MNladyslipper]

He goes in MOnday for inpatient therapy - standard for AML. They say it is progressing to this. The drug is idarubesin ara-c. I don't know how long it will take or where we go from here, I guess one day at a time!

[Harold P]

Hi Bev,
We are praying for you, Barry & your family. I sure hope that this new drug works quickly so you guys can move on to the transplant. I have never heard of this drug before. Do you know why his doctors are going to try this particular chemo drug? Just know that we are thinking about you all. Best of luck & keep your spirits up.

Pete & Sandy Peterson

[MNladyslipper]

Sandy,
They are treating him as though he is in AML. These are standard for AML. They hope to get the blasts down quickly and go ahead with transplant - I think. We have done everything over the phone. We are a little (lot) upset with Mayo that the blasts jumpled like this. Our dr. did not order a bmb since early April and would not have ordered this one if Fairview hadn't called to see if we were ready to proceed with transplant. That is a long time to go without bmb when you are working towards transplant. Thanks for the prayers we can use them all. Been wondering how you guys were doing - let me know.
BEv