[Karen]

Stem cell harvest coming up--any advice?

by Karen on Sat Feb 26, 2011 2:42 pm

Hi everyone,
I hope you are all doing well!
I'm starting the process for my stem cell harvest next week. The stem cells will be frozen as my doctor feels there is no need to do a transplant at this time--but we have to get those stem cells out as I'm in a clinical trial of Rivlamid, Velcade and dexamethasone.

Next Thursday I'll be having the apheresis catheter inserted and then on Friday I get the Cytoxan. Then a week or so of Neupogen injections (plus whatever other drugs they prescribe) and then, if all goes well, the harvest starting on March 14th. They've arranged for a visiting nurse service to come during the Neupogen week so at least I won't have to be going into the hospital every day (barring any complications.)

The transplant team at my hospital (I'm being treated at the Wilmot Cancer Center/Strong Memorial Hospital in Rochester, NY) has been great about explaining everything, all the possible side effects, each procedure, etc. But I know several of you have undoubtedly been through this so I thought I'd ask if you have any experiences/advice you can share. I'm coming to this from being a person who has never had any kind of surgery so even the insertion of the catheter is making me somewhat nervous. And this will be my first experience with a "real" chemo drug so I'm nervous about that, too (I know about the hair loss--what were your experiences? My nurse said it can range from "significant thinning" to total hair loss.)

Thanks!

Karen

[Caro]

Re: Stem cell harvest coming up--any advice?

by Caro on Sun Feb 27, 2011 1:41 pm

Hi Karen,

my partner had his apheresis in Nov 07. He nearly lost his hair completely, so it was necessary to shave the rest. Lookes too ugly !
Some days you will be in neutropenia, what means you will have nearly no body's defenses. I guess your doctors explained to you, what you are allowed to eat and what not. Nuts for example can consist hidden fungus spores. A basic rule is: Eat only what you can peel, fry or cook.
My partner had only one sessions at the apheresis machine to collect his stemm cells, some people need more.
He recovered easy and quickly from this procedure.

Wish you a lot of stemm cells.

Caro

[Gail]

Re: Stem cell harvest coming up--any advice?

by Gail on Tue Mar 01, 2011 4:01 pm

Hello Karen,
We are from Syracuse NY, prior to our experience so we are well aware of Strong Memorial Hospital and what a fine reputation it has . We now live in Florida so my husband's SCT took place at Moffitt Cancer Hospital in Tampa, Fl. We also were extremely fortunate to be in such competent hands.
You probably have already been told this but I want to stress the importance of sipping ice chips during the transplant to cut down on mouth sores.
My husband was also very chilled and needed jogging pants , flannel shirts, sweatshirts, during this whole time. His appetite was extremely poor so we got a script for Remeron and after that he was ready to eat the bed.
My husband's SCT was in Oct 2007 and he remains in complete remission with no meds except a monthly Zomeda infusion
Sending you our best wishes for a smooth sail through this difficult time.
Gail Miller

[lyndaclark]

Re: Stem cell harvest coming up--any advice?

by lyndaclark on Tue Mar 01, 2011 8:03 pm

You're just having your stem cells collected, but not having "heavy duty" chemo like melphalan after collection, right? If that's the case, it shouldn't be too bad. Just make sure you keep your apheresis site sterile. I believe it was the melphalan that made me sick and made my hair fall out, and caused the possibility of mouth sores, not the cytoxin (although I agree with post to eat ice chips if you are having chemo infusion after collection). The one side effect I wasn't aware of that occurred was the bone pain due to the neupogen. The collection itself is not much different than giving blood. Your apheresis catheter will have a two or three tubes connected; one for your blood to go out and one for putting the blood back in. I was lucky and collected enough for two stem cell transplants in one collection (took a couple of hours)

[Cyom22]

Re: Stem cell harvest coming up--any advice?

by Cyom22 on Tue Mar 01, 2011 9:16 pm

Hi Karen, the stem cell collection wasn't bad at all. The hardest part was keeping the trifurcation catheter dry and clean, as I had mine put in 2 weeks before as part of a antibody clinical trial before my stem cell collection. The neupogen made me a little achey. The actual collection was easy. A day in their bed with books, magazines and nice nurses to talk to! Nice lunch also! Luckily I had enough collected the first day. I hope you will too, Carol Y

[gail crooke]

Re: Stem cell harvest coming up--any advice?

by gail crooke on Thu Mar 03, 2011 9:31 pm

Hi Karen, My hubby just went through stem cell collection in January. The collection portion went very smoothly. He had his chemo before the collection a couple of weeks before the harvest. He actually gave himself the Nupogen and that went well-we did have a visiting nurse come to instruct him on that procedure. He did experience some bone pain, but not enough to take anything for it. The visiting nurse suggested we take Claratin for the bone pain (generic brand active ingredient is Loratadine). His cell collection went great and he collected 7.6 million in 1 day. A 1 day harvest is not always typical. He did lose his hair, but it took several weeks after the chemo. The recovery from the cell collection was not really an issue at all. He had his transplant about 2 weeks after the collection and I also echo the advice to chew on ice chips during the chemo process when you have the transplant -he had no mouth sores at all! We also tried to limit his exposure to people & germs prior to the transplant as our Dr. (Penn Med. in Phila.) felt like most of the adverse side effects from the transplant come from germs, etc. that are already in your system and digestive track before the transplant. He went through the transplant with very few issues: spent 16 days in the hospital and was back to work full time a month from the tansplant. Our Dr. said only about 5% of patients brezze through the transplant with such few side effects. God Bless you as you take this next step in your Myeloma journey.

[Karen]

Re: Stem cell harvest coming up--any advice?

by Karen on Mon Mar 07, 2011 10:22 am

Thanks everyone! I appreciate all the advice. Yes, right now I'm just having the stem cells harvested and stored; there are no plans for a transplant yet. My doctor said it could be 2-8 years before I go for one. I suspect it will be on the lower end of that range but who knows? My clinical trial will go until the early fall and then we'll see how I'm doing. At any rate I will bear in mind all of your transplant-related advice for when I need it. Gail, it certainly is encouraging to hear how well your husband tolerated the transplant procedure. I know everyone's experience is different. My doctor also mentioned that the real risk for germs during that time comes from what's already in your body that the immune system can no longer fight off.

So far I'm doing OK; I had the apheresis catheter inserted last Thursday and got Cytoxan on Friday. The catheter is a bit uncomfortable and I am also somewhat paranoid about keeping it dry (no showering of course) and clean and flushed. Home care did come out on Saturday with all the supplies and gave us a detailed "lesson," so it should be OK, and they are coming out a few times this week to help with the Neupogen and draw blood, so I can get support then as necessary. If all goes well I'll head into the hospital on Monday or Tuesday for the collection and will hope for speedy results such as some of you have had!

[Jubyanne]

Re: Stem cell harvest coming up--any advice?

by Jubyanne on Tue Mar 15, 2011 2:16 pm

Guess you are through or in the midst of the SC extraction right about now. Bet you are doing fine and your fears put aside. May God bless you and keep you in remission. It's great to know those cells are there, though, for if and when you need them.
I had the transplant last fall, two years after giving my stem cells. I have a high risk myeloma, that is 4/14 cross over, and was treated with Velcade/Decamethazone alone. I hope the aggressive treatment you are on gives you many years of remission.
Julia

[Karen]

Re: Stem cell harvest coming up--any advice?

by Karen on Thu Mar 24, 2011 6:01 pm

Thanks Julia and all who wrote.
The harvest went very, very well. The doctor had said that they aimed to collect between 5 and 10 million stem cells, and on the first day they collected 9.4 million. So I only had to go in that one day. I had the catheter taken out two days later and was glad to see it go!
Now all of my hair is falling out from the Cytoxan, but oh well, it will grow back.
I met with my hematology oncologist on Tuesday and he finally got around to mentioning that I don't have any genetic/chromosomal abnormalities, so that was very good news.
Take care, everyone.
Karen

[goldhair54]

Re: Stem cell harvest coming up--any advice?

by goldhair54 on Sun Apr 17, 2011 6:23 am

ok...I'm getting my cells harvested in June. I had no idea that I would be give cytoxin and lose all my hair...that was NOT mentioned. Do they still do it that way???