[EF11]

ASCT Experience

by EF11 on Sun Apr 05, 2015 12:18 am

I want to report on my husband's recent auto stem cell transplant at Massachusetts General Hospital. Our experience was far better than anticipated. I know many Beacon readers have had very challenging SCT experiences and I want to share our not so bad (so far) experience for those with a SCT in their future or considering one. Aside from myeloma, he went into transplant as a very healthy, fit, young guy and I'm sure that all helped, but from what I've read here, luck also seemed to be on our side.

My husband was admitted on March 17, day -3. He had a picc line placed in his arm and received melphalan that day and the next. We had heard and read on the Beacon the advice to chew ice before and during the chemo. I can't say scientifically that his diligence with the ice helped, but he did not suffer any mouth sores. Day -1 was an off day and on day zero, the first day of spring, he received the infusion of his own stem cells.

He had mild nausea almost from the start and extreme fatigue set in after a few days, perhaps strongest around days 3 and 4. Ativan and compazine helped a little for the nausea (and likely the fatigue). He took olanzapine nightly as a sleeping pill, sometimes two. He never missed a day of walking the floor, taking a shower or eating meals. Although there were about 3 days when his meals consisted of English muffins, bagels and toast. Most days he had a full, hot dinner - generally something I brought or ordered in from outside the hospital. He never vomited and only had slight diarrhea a couple times, in fact by the end of his stay he asked for an Imodium. He never spiked a fever. He received platelets once on about Day 8 and again just before discharge on Day 10. Otherwise he had no infusions. Oddly, while his counts were still way down, around Day 7-8, He started feeling completely fine and really just wanted to get home.

He was discharged on Day 10 and has felt pretty normal, taking long daily walks with the dog and eating as normal as one can on a neutropenic diet. It is now Day 15 and he says he has some GI issues but his worst side effect is a bad taste in his mouth. Also, his neuropathy is bothering him in his feet and the back of his lower legs. He's taking gabapentin and just upped the dosage but not sure if it's helping.

All in all, while it was difficult, uncomfortable and he felt pretty awful for a couple days, it was not so bad, as long as it worked of course!! I know we still are not out of the woods but his counts are on the rise and we are being very careful at home.

I am profoundly grateful to all the amazing healthcare providers at MGH! I am amazed at the incredible care and dedication of each and every nurse and doctor. They definitely are a big part of why my husband's transplant went so smoothly.

[mikeb]

Re: ASCT Experience

by mikeb on Sun Apr 05, 2015 11:32 am

Hi EF11,
Thanks for posting about your husband's transplant experiences. I'm happy to hear that things have gone relatively smoothly for him!

Sending good wishes his way for that trend to continue and for his eventual results to be great.

Mike

[Mister Dana]

Re: ASCT Experience

by Mister Dana on Sun Apr 05, 2015 12:41 pm

Thank you, thank you, thank you for posting this. Forum readers may recall that I thought I was the luckiest son of a gun where ASCT toleration was concerned, but your husband has me beat by a mile. I have given encouragement to patients on the forum heading into transplant and never heard how things worked out for them. It cheers me to know that my good luck was exceeded by yours.

Tell him to take it easy and to avoid possible sources of infection. The neuropathy will die down, as will other effects like swollen ankles, fatigue and such. Please keep posting, especially when you get to the decision of whether to take maintenance chemo or not.

Dana