Hi everyone,
I have been reading through the threads of everyone's transplant experiences with new interest, since I am now officially scheduled for my transplant around June 26th (barring any unforseen delays due to availability of beds/insurance hangups.) I have one more pre-transplant test to do (carotid ultrasound) and have to meet with the social worker, otherwise I think I am good to go.
I've been on Cytoxan / Velcade / dex since December and my numbers are in pretty good shape going in, although the Kappa Light Chains are ever so slowly edging up again, but my doctor does not seem concerned. Right now he's cut out the Cytoxan [cyclophosphamide] and I think I've had my last Velcade/dex treatment (yesterday), unless there are really long delays in the transplant for some reason.
I'm having this done at the Wilmot Cancer Center in Rochester NY (part of the URMC/Strong Memorial Hospital.) They do many transplants each year so I am confident that I am in good hands. I've already had the stem cell harvest and my cells have been frozen since early 2011. It was very successful, so after this I have enough stem cells for two more transplants, should they be necessary.
Just wondering if anyone who hasn't posted recently has any practical advice to share about getting through the whole experience. My nurse/doctor of course gave me a lengthy list of side effects, etc., as well as "what to bring/what not to bring." It seems fairly common-sense and the only real restrictions are: no fresh flowers, no raw meat or undercooked eggs, no kids under 5, no pets.
We are lucky in that we only live about 10 minutes from the hospital, so friends & my husband will be able to visit (if healthy). The hospital did suggest bringing some snacks to ward off nausea in case the food service is slow. Apparently it is run more like room service in a hotel than regular hospital meals.
Thanks!
Karen
Forums
Re: Transplant experiences - any updates / tips?
To avoid or lessen mouth sores from the melphalan suck on ice chips during the entire chemo process. This was suggested to me by one of the nurses so I did it and never developed any.
After chemo you will gradually get weaker and will be tired all of the time. They will want you to walk a mile or two every day which, with the way you will feel, is tough. I tried hard to get my walks in but, on at least one occasion, I was so tired that I slept almost the whole day with no problems sleeping that night. It gets that bad. Once your stem cells start grafting and your blood counts start to rise, you will slowly get your strength back.
Nausea was my biggest issue. Ginger cookies, ginger ale, etc. helps a bit with the nausea but I eventually got tired of it. They have good nausea medication, at least one of which will put you into la la land. Even if you don't like that feeling I suggest taking it to keep the nausea to a minimum. My nausea persisted for at least a month or more after I was discharged but it was minimal and the nausea pills helped.
It also takes a while for your body to recover to the point that it can regulate your temperature, or at least the temperature that you feel. I was constantly cold for several months. Of course my SCT was this past November and this past winter in the Midwest didn't help matters. I think that I would have loved a hot summer,
I hope this helps. At least you will have an idea of some of what to expect.
After chemo you will gradually get weaker and will be tired all of the time. They will want you to walk a mile or two every day which, with the way you will feel, is tough. I tried hard to get my walks in but, on at least one occasion, I was so tired that I slept almost the whole day with no problems sleeping that night. It gets that bad. Once your stem cells start grafting and your blood counts start to rise, you will slowly get your strength back.
Nausea was my biggest issue. Ginger cookies, ginger ale, etc. helps a bit with the nausea but I eventually got tired of it. They have good nausea medication, at least one of which will put you into la la land. Even if you don't like that feeling I suggest taking it to keep the nausea to a minimum. My nausea persisted for at least a month or more after I was discharged but it was minimal and the nausea pills helped.
It also takes a while for your body to recover to the point that it can regulate your temperature, or at least the temperature that you feel. I was constantly cold for several months. Of course my SCT was this past November and this past winter in the Midwest didn't help matters. I think that I would have loved a hot summer,
I hope this helps. At least you will have an idea of some of what to expect.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Transplant experiences - any updates / tips?
Thanks, Rick! Very helpful just to have an idea of what someone else went through on a daily basis.
The ice chips during chemo is apparently standard procedure at my hospital, since it's listed on the treatment plan along with the melphalan.
Best wishes,
Karen
The ice chips during chemo is apparently standard procedure at my hospital, since it's listed on the treatment plan along with the melphalan.
Best wishes,
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Transplant experiences - any updates / tips?
Hi Karen,
Just a few minor things come to mind.
I wanted pudding but the hospital served those Snack Packs that have a lot of cornstarch because they don't need to be refrigerated. My husband offed to bring Swiss Miss but the hospital was leery because they need refrigeration. So we never solved that. But to me, those Snack Packs were disgusting. Maybe find out exactly what you hospital allows to be brought in.
He was able to bring me Ritz crackers and A and W Root Beer which helped my stomach.
Ask for nausea meds before you need them.
I watched Season 1 of The Mindy Project on disc during the melphalan because it just makes me laugh so much. Don't try to bring anything heavy or depressing to read or watch. Go for happy and funny.
Bring lots of comfy underwear, T-shirts and pajamas.
I also needed chapstick and my husband came back with about 20 different flavors of those!
They didn't force me to walk but I was up and down using the bathroom and did a bit of walking in the room.
Definitely don't stop with the ice chips.
Oh, and one thing I wasn't fully anticipating was that you have to have all of your urine measured and if you get diarrhea, also that. Nothing that you can do about it except to know that others have had to make that fun call, "Um, nurse, there's a bucket of poo in my bathroom".
Best wishes for a smooth transplant experience!
Just a few minor things come to mind.
I wanted pudding but the hospital served those Snack Packs that have a lot of cornstarch because they don't need to be refrigerated. My husband offed to bring Swiss Miss but the hospital was leery because they need refrigeration. So we never solved that. But to me, those Snack Packs were disgusting. Maybe find out exactly what you hospital allows to be brought in.
He was able to bring me Ritz crackers and A and W Root Beer which helped my stomach.
Ask for nausea meds before you need them.
I watched Season 1 of The Mindy Project on disc during the melphalan because it just makes me laugh so much. Don't try to bring anything heavy or depressing to read or watch. Go for happy and funny.
Bring lots of comfy underwear, T-shirts and pajamas.
I also needed chapstick and my husband came back with about 20 different flavors of those!
They didn't force me to walk but I was up and down using the bathroom and did a bit of walking in the room.
Definitely don't stop with the ice chips.
Oh, and one thing I wasn't fully anticipating was that you have to have all of your urine measured and if you get diarrhea, also that. Nothing that you can do about it except to know that others have had to make that fun call, "Um, nurse, there's a bucket of poo in my bathroom".
Best wishes for a smooth transplant experience!
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Transplant experiences - any updates / tips?
You will do fine throughout the process.
My husband was never hospitalized and did it all outpatient via Vanderbilt.
Ice chips are key during melphalan treatment process
During the transplant experience, they may sedate you a little or give you Benadryl to avoid allergic reactions.
You will reap of a CORN smell (the preservative for the stem cells). It is a painless process.
The building up of cells can be painful. Request Claritin to assist with the pain and a pain pill before it gets unbearable.
My husband did not get nausea because he was careful about what he would eat and when. He did have a bout with diarrhea around Day 10 or so.
His lowest point (just tired, sickly) was Day 5.
You will do fine.
Stay comfortable during the process. Wishing you the best!
My husband was never hospitalized and did it all outpatient via Vanderbilt.
Ice chips are key during melphalan treatment process
During the transplant experience, they may sedate you a little or give you Benadryl to avoid allergic reactions.
You will reap of a CORN smell (the preservative for the stem cells). It is a painless process.
The building up of cells can be painful. Request Claritin to assist with the pain and a pain pill before it gets unbearable.
My husband did not get nausea because he was careful about what he would eat and when. He did have a bout with diarrhea around Day 10 or so.
His lowest point (just tired, sickly) was Day 5.
You will do fine.
Stay comfortable during the process. Wishing you the best!
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Transplant experiences - any updates / tips?
For my hospital stay, was made much easier with an eye mask and ear plugs. My hospital had very good air conditioning to keep the air clean but it was noisy in my room, ear plugs help me sleep at night. And I found the room too bright, so eye mask helped sleeping too.
Also, hospital provided wifi access but it was pretty poor, so a 4g tablet kept me connected to the world - a must for me!
Good Luck,
Laura
Also, hospital provided wifi access but it was pretty poor, so a 4g tablet kept me connected to the world - a must for me!
Good Luck,
Laura
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LauraScot - Name: Laura
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2013
- Age at diagnosis: 47
Re: Transplant experiences - any updates / tips?
Some people do get very sick and have to be hospitalized during the recovery. My husband was one of them. I'm not telling you that to scare you, just want you not to feel like you are somehow a failure if you happen to be one that does need hospitalized.
He had severe nausea, got a C-diff infection, and definitely was not up walking! It was a very miserable 10 days where he did nothing but lie in bed with his eyes closed and fight to not throw up.
That's the bad news. The good news is that a month later he was out deer hunting. The transplant was 2.5 years ago. He is very active: works, travels, works out, rides a motorcycle, etc. If you have bad days, just keep in mind - IT DOES GET BETTER!!!
He had severe nausea, got a C-diff infection, and definitely was not up walking! It was a very miserable 10 days where he did nothing but lie in bed with his eyes closed and fight to not throw up.
That's the bad news. The good news is that a month later he was out deer hunting. The transplant was 2.5 years ago. He is very active: works, travels, works out, rides a motorcycle, etc. If you have bad days, just keep in mind - IT DOES GET BETTER!!!
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Transplant experiences - any updates / tips?
I did my transplant outpatient at Mayo Rochester in February and had little difficulty except lack of appetite and about 10 days of rather severe lethargy (days five to fifteen following transplant day). I was back to work part time two weeks later with essentially no residual effect from transplant. Not everyone has it this easy, but it was pretty routine for me. I hope you all experience the same. I am 61.....
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wesley - Who do you know with myeloma?: me
- When were you/they diagnosed?: July, 2013
- Age at diagnosis: 60
Re: Transplant experiences - any updates / tips?
Thanks so much, everyone!
Joy, my hospital seems pretty lenient about food. They've said several times that people can bring in just about anything I would want to eat. Apparently they have a fridge (although I understand it is small) that patients and family can put food in (e.g., if my husband wanted to come and spend the day, he could bring some food to put in the fridge for himself.) The only food restrictions are: no raw meat, no undercooked eggs, fruits & vegetables without thick skins have to be washed. Of course, what I am *allowed* to eat and what I will *feel* like eating could be quite different things, I know.
They did say to bring whatever I usually like to eat/drink for nausea, so as to have something in the room in case it takes a while to get something from the food service/nursing staff. I guess I'll bring along some saltines and then see how it goes. There is a ginger drink I've used in the past - it's called Ginger Soother - that has worked better than anything else for nausea for me. But it does have to be refrigerated, so I'm not sure how much I could stockpile!
Laura, that's very good advice about the earplugs and eye mask. I know they said something about checking my vital signs every 4 hours. So I'm not anticipating a lot of unbroken sleep
We'll see. I also want to see if they'll let me bring in a small fan, since I sleep much better with white noise.
I've heard from many people that days 5-10 can be the worst, so I will try to be prepared for that.
They did warn me about the measuring the urine, etc. Ugh. I suppose they are all used to it and I will just have to adjust. I went through a period where I had to do the 24-hour-urine test every month, so I am somewhat used to that concept!
For me I think the worst part will be being cooped up for so long and not being able to get fresh air. I can get a little claustrophobic. Of course, if I'm not feeling well I probably won't really care. I've never been in the hospital for anything else except childbirth so I have no experience with that!
Karen
Joy, my hospital seems pretty lenient about food. They've said several times that people can bring in just about anything I would want to eat. Apparently they have a fridge (although I understand it is small) that patients and family can put food in (e.g., if my husband wanted to come and spend the day, he could bring some food to put in the fridge for himself.) The only food restrictions are: no raw meat, no undercooked eggs, fruits & vegetables without thick skins have to be washed. Of course, what I am *allowed* to eat and what I will *feel* like eating could be quite different things, I know.
They did say to bring whatever I usually like to eat/drink for nausea, so as to have something in the room in case it takes a while to get something from the food service/nursing staff. I guess I'll bring along some saltines and then see how it goes. There is a ginger drink I've used in the past - it's called Ginger Soother - that has worked better than anything else for nausea for me. But it does have to be refrigerated, so I'm not sure how much I could stockpile!
Laura, that's very good advice about the earplugs and eye mask. I know they said something about checking my vital signs every 4 hours. So I'm not anticipating a lot of unbroken sleep
We'll see. I also want to see if they'll let me bring in a small fan, since I sleep much better with white noise.I've heard from many people that days 5-10 can be the worst, so I will try to be prepared for that.
They did warn me about the measuring the urine, etc. Ugh. I suppose they are all used to it and I will just have to adjust. I went through a period where I had to do the 24-hour-urine test every month, so I am somewhat used to that concept!
For me I think the worst part will be being cooped up for so long and not being able to get fresh air. I can get a little claustrophobic. Of course, if I'm not feeling well I probably won't really care. I've never been in the hospital for anything else except childbirth so I have no experience with that!
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Transplant experiences - any updates / tips?
A few notes from mine.
I developed C-diff and have to think I might have avoided it had I ate yogurt everyday from the start.
I drank a couple of Boost everyday to get some calories despite my lack of appetite and unpredictable nausea. Ensure would have worked also.
I had trouble sleeping and couldn't get any help so I ask for a strong pain pill every night.
Don't forget that your immune system will be slow to recover and will still be compromised when you get home.
I developed C-diff and have to think I might have avoided it had I ate yogurt everyday from the start.
I drank a couple of Boost everyday to get some calories despite my lack of appetite and unpredictable nausea. Ensure would have worked also.
I had trouble sleeping and couldn't get any help so I ask for a strong pain pill every night.
Don't forget that your immune system will be slow to recover and will still be compromised when you get home.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
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