[KLD]

Anyone doing a transplant right now?

by KLD on Sat Feb 21, 2015 6:54 pm

My husband had an auto bone marrow transplant (BMT) Wednesday and all is going well so far. That is, considering the circumstances.

Today is Day +3. The staff at University of Michigan, Ann Arbor, have been amazing. My husband is 59, diagnosed in May, not high risk, but did not achieve a complete response prior to transplant. He harvested a ton of cells in one day, so actually had a good amount put in with plenty more frozen.

I know things will be changing soon. His numbers have dropped, but not low enough to be super sick yet. He has managed to do PT, walk, and eat 2 small meals a day and snack. His liquid intake has been good as so far he has no mouth sores and nausea is controlled with meds.

Is anyone else out there currently hospitalized and transplanting? How is it going?

Any experienced multiple myeloma patients with advice?

Anyone come out with a complete response after going into transplant with a very good response?

KLD

[Multibilly]

Re: Anyone doing a transplant right now?

by Multibilly on Sun Feb 22, 2015 8:43 am

KLD,

If you haven't done so already, you might find thumbing through these documented transplant journeys to be helpful:

https://myelomabeacon.org/forum/links-existing-forum-discussions-t3780.html

Just go to the section "Stem Cell Transplant Experiences of Beacon Forum Members" in the above link.

[mikeb]

Re: Anyone doing a transplant right now?

by mikeb on Sun Feb 22, 2015 11:27 pm

Hi KLD,

I hope things are continuing to go well for your husband with his SCT.

In answer to your question about responses, I had 3 cycles of RVD induction therapy and only got to partial response prior to my SCT in May 2013. After the SCT, I had 2 more cycles of RVD for consolidation therapy. Then I began Revlinid maintenance in September 2013, which I am still on. In October 2013, I achieved VGPR. In July 2014, I achieved sCR and MRD negative status.

So I am an example of someone who has done well after not having a CR going into the SCT.

Best wishes to your husband. Please keep us posted on how he is doing.

Mike

[Grant]

Re: Anyone doing a transplant right now?

by Grant on Mon Feb 23, 2015 1:42 pm

Hi KLD,

I am 40 days post stem cell transplant and it went really well. I had heard a lot of horror stories, but I managed not to get a temp, or a throat infection, and – importantly – I think managed to keep eating all the way through. And I was released after two weeks with counts looking good.

I will post my experience soon, but just wanted to say that you should keep positive, it isn't always as bad as it's been made out to be. My biggest tip is: No matter how disgusting the mouth wash is, he should keep at it.

I'm back at work. Not sure how successful it's been yet. I'll know that in about 4 weeks, but feeling great!

Grant

[NStewart]

Re: Anyone doing a transplant right now?

by NStewart on Mon Feb 23, 2015 2:54 pm

I had my transplant in Jan 2010. My m-spike was 0.6 g/dl (6 g/l) going into the transplant and remained at that same level for about 6 months post transplant. Then it dropped to 0.0 g/dl. I wasn't on any maintenance or consolidation regimens following the transplant. I tend to be a slow responder to things, so I wasn't surprised when my numbers hadn't changed immediately post transplant.

All the best to your husband for a successful transplant,
Nancy in Phila

[KLD]

Re: Anyone doing a transplant right now?

by KLD on Sun Mar 01, 2015 10:27 am

Thank you to all the replies. It is so helpful to hear from everyone.

My husband has had what I assume is a fairly "easy" transplant for a 59 year old. He avoided mouth sores with religious ice chewing and mouth rinse. No blood clots or pneumonia ,as he was able to walk and / or do PT all but one day. He has not needed Imodium at all. So far, no blood products. He doesn't need fluids, so no IV pole all day yesterday. He does have nausea, but takes orals for that and can eat meals if meds are timed right. He has had some fatigue with the need for a nap about half the days he has been in.

He is on Day +11. Yesterday, platelets were 16, and ANC was on its fourth day of 0. Don't know his numbers yet this morning, as he is in Michigan and I am home in Ohio to deal with snow and get the house ready.

Doc said doubtful he would rebound in time for a Monday discharge. Will be more like Wed­nesday, he predicted. We are close enough that he will go home and return in a week.

My husband has been pretty independent during his hospital stay. I imagine that will carry over to his return home.

I'm off to clean and disinfect for probably the entire day. I will have to snow blow once or twice today also. Then I will head back up late tonight when the roads are cleared.

I know people are looking for advice on transplants from time to time. What I would have done differently would be to have worked more and saved some days. If he does a tandem, I will work the first days of his stay, as they were uneventful. Take a day off of work midweek and stay overnight. Work a few and spend the weekend up there. The second week I will play it by ear and work when I can.

I took intermittent leave for current transplant and will do the same if another one.

KLD