PDA

View Full Version : Stem cell transplant-- anyone have exp?



gabby.gator
Feb. 21, 2013, 09:21 PM
I've mentioned that my husband has mantle cell lymphoma, and has been receiving chemo, we're getting to the part of treatment that includes a stem cell transplant.

we met today with the transplant team, a new team for us, as our insurance didn't consider the hospital where we were "in network" so we had to change doctors, at least for the transplant.

we had a comprehensive meeting today, got lots of new info, much more in depth than with the other team, probably because we were not sure the first team would actually do the transplant because of the insurance issues....a fat book to read, and all I can say is, WE'RE SCARED!!! it almost sounds like all the complications, all the worry about the healing from the transplant, is almost worse than taking our chances at another relapse--- which, with his lymphoma, is a guarantee if he DOESN'T get a transplant, likely in 3 yrs or less.

any of you have any direct experience?? I realize that each patient is different, it just sounds like they're going to do their best to save him while simultaneously try to kill him!

advice?? and, thanks in advance!

Redhorse98
Feb. 21, 2013, 09:37 PM
I am a bone marrow transplant RN. Is he having an auto or allo (donor cells)? I will try to answer any questions you may have.

Danielle

gabby.gator
Feb. 21, 2013, 09:54 PM
allo, from what we were told today, the time for auto would have been the first time he was diagnosed/treated. ??

~~~ we're VERY worried about what the DONOR will go thru-- geez, I'm a gung ho donor wanna be, and after what I read, I'm not so sure I could do it! How are we going to ask a perfect stranger?

I think I'm looking for assurances from someone who has been thru it. we only know one person IRL, and he passed away a few months after the transplant from complications from pneumonia....

randomequine
Feb. 21, 2013, 09:59 PM
Donors sign up knowing what they may have to go through. For example, I am registered in the Be The Match (National Marrow Donor Program) registry -- when I signed up, I knew full well the implications and I would be more than happy to do so in the event that I'm ever called upon. I'd be more than happy to go through some discomfort in order to give someone their life back!!

I also work for a company that procures stem cells from umbilical cord blood for transplant (also goes in the Be The Match registry) -- I don't know if there are specific types/diseases that cannot utilize cord blood, but there may be a possible match there as well.

Prayers for you and your husband! I cannot imagine going through this...

Mara
Feb. 21, 2013, 10:05 PM
My brother-in-law has had 2 (multiple myeloma). He didn't get ill from it at all, but he was already in the hospital as he'd had the chemo rounds first.

One thing I bet they didn't tell you - during the actual transplant, it smells like creamed corn. All of the nurses said that's sort of a "signature scent" for transplants.

As for the donor, yes, they'll be in some pain before and after. However, I'm on a donor list for marrow after my younger cousin successfully beat leukemia as a result of a transplant. I know what it involves and would not hesitate if I were called, even for someone I didn't know. The discomfort is temporary and a small price to pay for giving someone a chance at a normal lifespan.

ReSomething
Feb. 21, 2013, 10:09 PM
My mother was diagnosed with MS about 15 years ago and probably ten years ago she went down to Mexico and had an experimental stem cell transplant. She did not experience any ill effects, may or may not have extended her lifespan. She paid cash, and told me about it after the fact, I thought she went on a cruise. I have no idea regarding the stem cells she received, I do know that it wasn't something available here.
She was scared, and desperate to try anything that might work, and she is still alive at aged 82 with symptoms that aren't so different from those of a stroke victim/ complications of aging.
She didn't share anything about the procedure either, either positive or negative, I'm sorry I can't offer reassurance on that.

flowersmom2
Feb. 21, 2013, 10:57 PM
4 years in remission from multiple myeloma. Had a stem cell transplant, however it was auto. It was hard on my body - I had no appetite and spent a lot of time in the bathroom. But I was fortunate that my body responded quickly and they sent me home days before we expected to go home. Your husband seems to have a strong support system in you. There will be days when the cure seems worse than the disease, but looking back, it was well worth it. Make sure you follow all their hygiene advice - I hated the food restrictions. Again, as others have said, feel free to PM.

SimpleSimon
Feb. 21, 2013, 11:26 PM
This is the Facebook page of one of my husband's co-workers. He is battling multiple myeloma and is currently undergoing his second round of treatments (relapsed). His wife updates this page pretty regularly when he is undergoing treatments - if you scroll back to the beginning (2010) you'll get lots of details of what they went through - and what to expect. https://www.facebook.com/#!/pages/Save-John-Knighten/410833255258?fref=ts

Wishing you and your husband the best. The supporting role is also a very tough role.

gabby.gator
Feb. 22, 2013, 03:48 PM
thank you all for your replies! feeling a little better today, SimpleSimon, I went to that FB page and read some of the posts, it's very much like what we are going thru, and looking at in the future.

Redhorse98
Feb. 22, 2013, 05:14 PM
Allos can be rough, typically are pretty sick before they get better. Nausea and mouth sores (mucositis) are common. The staff will be watching very closely for fevers as he will have no immune system until he engrafts. This is just very basic. Just remember that this whole process is a marathon and not a sprint. Take care & please feel free to PM with questions. I've been doing this for 4 years

gabby.gator
Feb. 22, 2013, 05:37 PM
thanks Redhorse, already feel as tho we've run that marathon!! I did read the "book" they gave us, really mostly skimming, but I'll read it multiple times, for sure, as we go further into the transplant process.

I'm debating on whether or not to have our kids read it also, so that they are completely aware of "this is a big deal". they're older 27/23, so I don't know if I should "shield" them or not........

Redhorse98
Feb. 22, 2013, 05:59 PM
I would definitely have them read it! They are plenty old enough to understand & you will need all the help & support to get through this process.

soloudinhere
Feb. 22, 2013, 06:03 PM
I would definitely have them read it! They are plenty old enough to understand & you will need all the help & support to get through this process.

I was 19 when my mom was diagnosed with stage 4 breast cancer.

She didn't include me in any of her decisions or any discussion of the process, and it really caused a lot of problems in our relationship. I felt I was old enough to know. For what it's worth, she is still with us, and I am now 24. However, we all know that this next relapse could be the last.

I think if your husband is okay with it, let your kids know what is going on with their dad. If they don't want to know, they will tell you, but I think it is better to leave the lines of communication open. They are support for you while you support your husband, as all family should be in a time like this.

Pleased_As_Punch
Feb. 22, 2013, 06:19 PM
I donated bone marrow then stem cells to my brother. Don't worry about the donor. It wasn't a big deal for me. By the time he was all chemo'd up enough to get the bone marrow he was in bad shape. After, the engrafting where he had no immune system was a big pain to manage. The stem cells were done as more of an "enhancement" some months later. It was a hard experience for sure, but he is healthy now!

gabby.gator
Feb. 23, 2013, 06:19 AM
I donated bone marrow then stem cells to my brother. Don't worry about the donor. It wasn't a big deal for me. By the time he was all chemo'd up enough to get the bone marrow he was in bad shape. After, the engrafting where he had no immune system was a big pain to manage. The stem cells were done as more of an "enhancement" some months later. It was a hard experience for sure, but he is healthy now!

I feel those who donate are angels earning their halos here on earth! :-)

we're going to have a family dinner and talk with the boys, next week we're meeting with the social worker from the transplant team to have some tough discussions re: living will, health care proxy, etc, as we really need to get that kind of stuff settled and I have a really hard time getting thru the talks.

again, thank you all for your posts, it's better having a bit of a bigger picture on the whole thing.

Redhorse98
Feb. 23, 2013, 07:53 PM
Thank you for doing the living will and Heath care proxy done beforehand. You'd be surprise how many people don't have that done prior to something major like a BMT!

HighFlyinBey++
Feb. 23, 2013, 08:12 PM
When is your husband having the transplant?

ReSomething
Feb. 23, 2013, 09:04 PM
I do agree with soloudinhere about being informed, granted my mom was really old and it wasn't really any of my business but it was my business, she's my mother. If there had been complications . . .

gabby.gator
Feb. 24, 2013, 08:59 AM
When is your husband having the transplant?

well, it would be a lot sooner if the insurance had worked with us!! now that we had to change facilities, the new team wants to do all the tests/scans again, so he'll need a PET/CAT scan, another bone marrow biopsy, all the other tests.

The typing kits will all go out to his brothers soon, as we just provided all the info for them.

We don't expect the actual transplant to happen for 12 - 16 weeks, and that's only if they find a match for a donor in one of his brothers.

pAin't_Misbehavin'
Feb. 24, 2013, 09:29 AM
My brother-in-law has had 2 (multiple myeloma). He didn't get ill from it at all, but he was already in the hospital as he'd had the chemo rounds first.

One thing I bet they didn't tell you - during the actual transplant, it smells like creamed corn. All of the nurses said that's sort of a "signature scent" for transplants.

My sister and I thought it smelled more like smoked oysters.:)



I'm debating on whether or not to have our kids read it also, so that they are completely aware of "this is a big deal". they're older 27/23, so I don't know if I should "shield" them or not........

Of course, you know them best, and I'm sure there's no right or wrong answer - but I vote "include them." My sister was always a very private person and had trouble with this part. Which was pretty frustrating for me and her daughters. But then we're the "imagine the worst" type and always do better with information than being left in the dark.

My sister had multiple myeloma, sadly the "high risk" type. I believe prognosis is far better for the "low risk" variety. Her transplant was auto and back before they understood as much as they do today. Still, the transplant bought her some good years and she wasn't terribly sick afterwards - or at least said she wasn't:sadsmile:.

HighFlyinBey++
Feb. 24, 2013, 09:33 AM
Oh good lord, why can't the new team use the old tests?? That seems so wasteful.

I wish him the best of luck finding a match. My son was on the list as a donor for about a month when they found a match to a man with non-Hodgkin's lymphoma. He's doing the PBSC donation over St. Patty's Day weekend.

Out of curiosity, is this "transplant scent" on the donor or recipient side?

gabby.gator
Feb. 24, 2013, 09:40 AM
Oh good lord, why can't the new team use the old tests?? That seems so wasteful.

I wish him the best of luck finding a match. My son was on the list as a donor for about a month when they found a match to a man with non-Hodgkin's lymphoma. He's doing the PBSC donation over St. Patty's Day weekend.

Out of curiosity, is this "transplant scent" on the donor or recipient side?

ugh, I asked the same thing of the dr, as she is holding the cd's of the other scans, just done in Dec/Jan and she said "because we need our radiologists to read the scans and they don't if they are not done by our team. IMO it's stupid. Just read the scans, it's not like the machines, etc are any different!

give your son a huge hug! and tell him he's a hero and an angel!!!

the scent is on the recipient side, from what I understand.

HighFlyinBey++
Feb. 24, 2013, 09:55 AM
IMO, that borders on "scam." Unless those scans are in poor, unreadable condition OR they show something that the team wants to check further, then (IMO) those scans are perfectly good. There's no need to double-dip the insurance company.

Re: my son, I already have :) He really, really wanted to be chosen!

gabby.gator
Feb. 24, 2013, 10:23 AM
I do agree with soloudinhere about being informed, granted my mom was really old and it wasn't really any of my business but it was my business, she's my mother. If there had been complications . . .

this is the ONE reason I'm going to force myself to do the paperwork, my husband and I have very different views on what is a burden, and I have to make sure it's about HIM and his wishes. If faced with the unthinkable, I don't feel I would be able to set my wants and needs aside in an emergency type of situation, so having it decided before hand will only be a comfort.

gabby.gator
Feb. 24, 2013, 10:30 AM
IMO, that borders on "scam." Unless those scans are in poor, unreadable condition OR they show something that the team wants to check further, then (IMO) those scans are perfectly good. There's no need to double-dip the insurance company.

Re: my son, I already have :) He really, really wanted to be chosen!

we had a few "tense" words, LOL, but it's been like that all along. every new dr wants to do their "own" tests. then they make comments or ask about why the other dr did or didn't do this or that, and it leaves us wondering WTF?? and don't get me going on the first oncologist, or the fact that he and his choice of treatment, or lack of, has left us where we are today. That being said, we didn't seek out a second opinion, so some if it is on our shoulders.

PhoenixFarm
Feb. 24, 2013, 02:52 PM
My uncle has multiple myloma and is 3 years post stem cell transplant from his sister. In general, it's been a good thing because he's still with us and living a relatively normal life. But, the transplant was no day at the beach, and he was in the hospital for a long, long time. He's had rejection problems, and will be on anti rejection drugs permanently, and he's on steroids a lot of the time. His sister had a lot of pain from the procedure. But, as I said, he's home and alive and getting to go normal stuff like enjoy his grand kids.

It's worth doing, no question, but prepare yourself for some rocky days.

Best wishes for your family.

Mara
Feb. 24, 2013, 07:27 PM
Tip for those who have multiple myeloma or family members suffering from it -
My brother-in-law is, thankfully, covered under his wife's insurance (she teaches). But as anyone who's had the misfortune to be up close and personal with cancer, the drug costs are still high. BIL and SIL applied for assistance from a couple of different organizations, and the Leukemia And Lymphoma Society came through with a check. (I want to say $10K, but I honestly do not remember).