The worst part of the stem cell transplant for me was the nausea and the inability to eat. I hate to tell you, but it really took me months to get my normal appetite back. I think mine was an extreme case, so you will probably do a lot better.
I drank a lot of chocolate milk. It's high in calories and there's good nutrition in the milk. And, the chocolate made me want to drink it. I also craved shrimp chow mein, hotdogs, and other salty foods. And, I avoided eating too much at any one time. Small, frequent meals are better. I would occasionally drink an Ensure, if I felt that I could really not tolerate anything at all.
As other posters have indicated, remaining hydrated is key. So, find something you like to drink and guzzle it! Except of course obvious things like regular caffeinated coffee. I also liked tomato juice. Plain water did not taste good to me for a long time. Seltzer was OK. Plain crackers and cookies.
Don't obsess about the food bit. It will all come back soon enough. I lost about 20 pounds between induction and stem cell transplant. I have gained about half of it back. I was not a big person to begin with (although I did have a few pounds to lose, but not 20), and I had to buy a whole new set of clothes. Now of course, having gained back half of what I lost, a lot of those things no longer fit me. So, my advice if you do lose weight is don't buy too many new things, you are likely to gain back a good portion, if not all, of the weight.
A low dose of Ativan (lorazepam) sometimes helped with my appetite. You may want to ask you doctor for that.
Good luck and keep us posted!
Ellen Harris
Forums
Re: Dean's Stem Cell Transplant (London, England)
Dear Dean,
Wish you all the best. These days will pass and it will be in history for you. I am sure you will have a wonderful Christmas at home with girls and stay in CR for decades. Thinking of you and sending positive energy to heal faster.
Wish you all the best. These days will pass and it will be in history for you. I am sure you will have a wonderful Christmas at home with girls and stay in CR for decades. Thinking of you and sending positive energy to heal faster.
-
Mojbahar - Name: M
- Who do you know with myeloma?: Self mgus
- When were you/they diagnosed?: Jully 2016
- Age at diagnosis: 48
Re: Dean's Stem Cell Transplant (London, England)
Dean,
My husband's counts didn't drop until he got off of the dexamethasone. He had 4 days of steroids at the beginning. They said it can mask the counts a bit. But it did start to drop after the dex was gone. Some people go all the way to 0.00. During my husband's induction treatment they said his counts would drop to zero and it never did, either time. His never got to zero this time either. It got close but never at 0 before it started going back up. I'm guessing it eventually will – it's just taking its time. When it does, it may drop very quickly.
Praying that you start to feel better soon.
Tara
My husband's counts didn't drop until he got off of the dexamethasone. He had 4 days of steroids at the beginning. They said it can mask the counts a bit. But it did start to drop after the dex was gone. Some people go all the way to 0.00. During my husband's induction treatment they said his counts would drop to zero and it never did, either time. His never got to zero this time either. It got close but never at 0 before it started going back up. I'm guessing it eventually will – it's just taking its time. When it does, it may drop very quickly.
Praying that you start to feel better soon.
Tara
-
TCG - Name: Tara
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 43
Re: Dean's Stem Cell Transplant (London, England)
Dean, by my calculations you're at Day 12 or 13 by now. How you feeling? No word since Day 8! Hopefully you're getting past the worst of it and can give us an update soon. Thinking of you here in Arizona!
-
chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Dean's Stem Cell Transplant (London, England)
I'm back. Thank you all for your advice on my sickness. It's all been a great help. I was just not feeling up to replying back.
I've lost track what day I'm on, I think around Day +13. At the start, except for the feeling sick, all was going well.
Then around Day 7 I have come down with a full body rash. A very bad rash and very itchy. It's probably a side effect of all the drugs, but I look rough. The doctor took a skin biopsy to confirm the cause. My temperature then shot up, and I have been of antibiotics since. The temperature Is from the rash as my skin is very hot. I'm now under the care of the dermatologist team. At the moment I look like a snowman with all creams which have been rubbed in to me. At least I'm getting in to the Christmas theme.
So far the sickness has gone and, except for this rash, I feel I'm getting better.
In the meantime, my hospital ward has been on shutdown due to a rotavirus. I've not been allowed any visitors until it's confirmed the bug is under control. Out of all the patients on this ward, me and one other are not sick with this bug. So I really don't need the worry of picking that up. I have my own room and separate nurses are looking after me, so it's not spreading. So fingers crossed.
Will update soon and thanks again for all the advice I've been given.
I've lost track what day I'm on, I think around Day +13. At the start, except for the feeling sick, all was going well.
Then around Day 7 I have come down with a full body rash. A very bad rash and very itchy. It's probably a side effect of all the drugs, but I look rough. The doctor took a skin biopsy to confirm the cause. My temperature then shot up, and I have been of antibiotics since. The temperature Is from the rash as my skin is very hot. I'm now under the care of the dermatologist team. At the moment I look like a snowman with all creams which have been rubbed in to me. At least I'm getting in to the Christmas theme.
So far the sickness has gone and, except for this rash, I feel I'm getting better.
In the meantime, my hospital ward has been on shutdown due to a rotavirus. I've not been allowed any visitors until it's confirmed the bug is under control. Out of all the patients on this ward, me and one other are not sick with this bug. So I really don't need the worry of picking that up. I have my own room and separate nurses are looking after me, so it's not spreading. So fingers crossed.
Will update soon and thanks again for all the advice I've been given.
-
Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Dean's Stem Cell Transplant (London, England)
Hi Dean!
Thanks for your update. I'm really sorry to hear about what's happening with your skin. I think what you're experiencing does happen to some people who get a transplant, although not to quite as extreme an extant as is happening to you.
Somebody else had a milder case of itchiness and rash after their transplant, and posted about it here:
https://myelomabeacon.org/forum/itchiness-rash-stem-cell-transplant-t4465.html
The thread has some feedback from Dr. Valent, and also links to a few other threads with helpful information (including one with feedback from Dr. Shain).
I hope the skin problem clears up soon and that you also avoid anything at all to do with the rotavirus.
Good luck!
Thanks for your update. I'm really sorry to hear about what's happening with your skin. I think what you're experiencing does happen to some people who get a transplant, although not to quite as extreme an extant as is happening to you.
Somebody else had a milder case of itchiness and rash after their transplant, and posted about it here:
https://myelomabeacon.org/forum/itchiness-rash-stem-cell-transplant-t4465.html
The thread has some feedback from Dr. Valent, and also links to a few other threads with helpful information (including one with feedback from Dr. Shain).
I hope the skin problem clears up soon and that you also avoid anything at all to do with the rotavirus.
Good luck!
Re: Dean's Stem Cell Transplant (London, England)
Hang in there Dean.
Glad to hear you're getting better. Hopefully the rash will pass, you'll dodge the rotavirus, and then you'll have smooth sailing from there.
Glad to hear you're getting better. Hopefully the rash will pass, you'll dodge the rotavirus, and then you'll have smooth sailing from there.
-
PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: Dean's Stem Cell Transplant (London, England)
Dean,
Good to finally hear from you! Hopefully the worst part of the transplant is past and the rash will go away soon. I know ACLinkBoca had a bad rash that went on for months and it ended up being scabies! He did a journal of his transplant earlier this year and there's a lot of stuff on there about rashes.
How are your blood numbers? Hopefully recovering quickly.
Watched Chelsea and Man City and thought of you the other day. Hope you're able to catch some matches here and there! How's it looking for being home with your girls on Christmas? Hope all is well, brother.
Good to finally hear from you! Hopefully the worst part of the transplant is past and the rash will go away soon. I know ACLinkBoca had a bad rash that went on for months and it ended up being scabies! He did a journal of his transplant earlier this year and there's a lot of stuff on there about rashes.
How are your blood numbers? Hopefully recovering quickly.
Watched Chelsea and Man City and thought of you the other day. Hope you're able to catch some matches here and there! How's it looking for being home with your girls on Christmas? Hope all is well, brother.
-
chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Dean's Stem Cell Transplant (London, England)
Thanks for the advice.
I think I'm around Day 15 now but keep losing track of my days. Sorry I have not been very good updating.
Finally my rash is starting to go. My results from the biopsy have confirmed that it's a drug reaction rash. When I look in the mirror now I'm starting to look human again. To be honest, if I hadn't of got this bad rash, the stem cell transplant would have gone so much better. The doctors said there is a good chance I will be coming home this weekend, which is great news.
Now that the hard part has been done, I've noticed some of the doctors are talking about an allogeneic transplant within 6 months. So I have a good feeling it will be in the cards for next year, but was informed to go home, get well, and we'll discuss an allo in the new year.
For any one who is nearly diagnosed and will be having a stem cell transplant, my advice is this: I am the biggest baby / wimp when it comes to hospitals, etc, So if I can do it, then you can. I was expecting all these weird and wonderful things to happen and, except for my rash and feeling sick at the start, it worked out well.
The worry is the worst part of the stem cell transplant, and it's that unknown worry feeling. The way I approached my stem cell transplant was to expect all the bad things to happen and, if they didn't, then that's a bonus.
The worst part for me – what caught me off guard – was my eldest daughter sending me sneaky texts at night without her mum knowing, saying "I'm crying myself to sleep because you are not here". Getting those loving texts was the hard part of my transplant, but she also made me stronger to get fit again.
Thanks for all your support.
Regards,
Dean
I think I'm around Day 15 now but keep losing track of my days. Sorry I have not been very good updating.
Finally my rash is starting to go. My results from the biopsy have confirmed that it's a drug reaction rash. When I look in the mirror now I'm starting to look human again. To be honest, if I hadn't of got this bad rash, the stem cell transplant would have gone so much better. The doctors said there is a good chance I will be coming home this weekend, which is great news.
Now that the hard part has been done, I've noticed some of the doctors are talking about an allogeneic transplant within 6 months. So I have a good feeling it will be in the cards for next year, but was informed to go home, get well, and we'll discuss an allo in the new year.
For any one who is nearly diagnosed and will be having a stem cell transplant, my advice is this: I am the biggest baby / wimp when it comes to hospitals, etc, So if I can do it, then you can. I was expecting all these weird and wonderful things to happen and, except for my rash and feeling sick at the start, it worked out well.
The worry is the worst part of the stem cell transplant, and it's that unknown worry feeling. The way I approached my stem cell transplant was to expect all the bad things to happen and, if they didn't, then that's a bonus.
The worst part for me – what caught me off guard – was my eldest daughter sending me sneaky texts at night without her mum knowing, saying "I'm crying myself to sleep because you are not here". Getting those loving texts was the hard part of my transplant, but she also made me stronger to get fit again.
Thanks for all your support.
Regards,
Dean
-
Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Dean's Stem Cell Transplant (London, England)
Good to hear things are improving for you Dean. I absolutely agree with your conclusion. The fear leading to the transplant was MUCH worse than the procedure and recovery. If you go in with your eyes open and ready to beat every challenge, you are in great shape. Look at it as your "job" for the time you are there, and just do everything the doctors and nurses tell you to do.
-
Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Return to Treatments & Side Effects