Hi everyone,
Just thought I'd send a quick update from the BMT unit at the Wilmot Cancer Center here in Rochester, NY.
I started the transplant last Wednesday, June 25th, so this is "Day +5." Time seems to be moving very, very slowly, but I am doing well so far. My counts are just starting to edge into the neutropenic range. They have dropped every day, but slowly.
So far my major issues have been nausea and fatigue. I had a few bouts of diarrhea, but thankfully that has eased up. I have been trying to stay on top of the nausea and the doctor just ordered that I get Zofran every 6 hours automatically, so I don't have to ask for it.
My appetite is almost gone and I'm really struggling to find anything I feel like eating. Sweet things seem a bit more appealing than others. This AM I got down half a bran muffin by adding strawberry jam. I've lost several pounds but fortunately I had some extra!
The care here is excellent and I feel I'm in very good hands. Just trying to take things a day at a time.
I'll try to update again; I'm also posting on Caringbridge as karenjones4.
Karen
Forums
Re: Karen's Stem Cell Transplant
Hi Karen,
Thanks for posting! It's good to hear that things are going well. I remember food not seeming so great. For me, chicken noodle soup seemed to be something I could tolerate. Hang in there. I'll be thinking of you.
Thanks for posting! It's good to hear that things are going well. I remember food not seeming so great. For me, chicken noodle soup seemed to be something I could tolerate. Hang in there. I'll be thinking of you.
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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: Karen's Stem Cell Transplant
Hi Karen. Sending you hugs and positive thoughts that you continue to proceed well.
Dana
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Karen's Stem Cell Transplant
It seems you are doing pretty well Karen overall at 5 days in. It is good to see.
I had started losing my taste for food and appetite about 4 months before my SCT at City of Hope. Occasionally I would get cravings for strange things, like salt and vinegar potato chips. Ensure helped keep me going through this time, but I was already down about 45 lbs by the time I checked in for the SCT. Too bad I did not have much of an appetite as the food on the hospital menu looked pretty good.
My loss of appetite was reason they did not discharge me sooner than they did , I was being feed through IV. I have to say this was causing me some stress, I could see I was wasting away.
Looking back though I do not think this is that unusual and it was not long after my discharge that my appetite came back, I am sure it will for you to.
Keep us up to date on how you are doing.
I had started losing my taste for food and appetite about 4 months before my SCT at City of Hope. Occasionally I would get cravings for strange things, like salt and vinegar potato chips. Ensure helped keep me going through this time, but I was already down about 45 lbs by the time I checked in for the SCT. Too bad I did not have much of an appetite as the food on the hospital menu looked pretty good.
My loss of appetite was reason they did not discharge me sooner than they did , I was being feed through IV. I have to say this was causing me some stress, I could see I was wasting away.
Looking back though I do not think this is that unusual and it was not long after my discharge that my appetite came back, I am sure it will for you to.
Keep us up to date on how you are doing.
Last edited by Eric Hofacket on Tue Jul 01, 2014 12:41 pm, edited 2 times in total.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Karen's Stem Cell Transplant
Sending you best wishes, Karen. I am going to be having my SCT in August. I would like to think I will be posting too, but I am seeing that things do not always go as planned. Take care and know we are here for you!
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: Karen's Stem Cell Transplant
Thanks, everyone.
Day +6 now. Yesterday was rough - the nausea, etc. They gave me some IV Phenergan [promethazine] on top of the Zofran [ondansetron] and it helped, but also caused a weird side effect where my legs got all jumpy and tingly. I think we're going with Ativan [lorazepam] next time.
My appetite came back somewhat today. We're allowed to have food brought in, so my husband brought me a real bagel and some cream cheese. Just ate half and it tasted good. He also brought me some Canada Dry ginger ale which I much prefer to the hospital brand.
My counts are still going down, WBC at 0.5, platelets 72, ANC 500. Still a ways to go, but they say they will start Neupogen tomorrow.
Karen
Day +6 now. Yesterday was rough - the nausea, etc. They gave me some IV Phenergan [promethazine] on top of the Zofran [ondansetron] and it helped, but also caused a weird side effect where my legs got all jumpy and tingly. I think we're going with Ativan [lorazepam] next time.
My appetite came back somewhat today. We're allowed to have food brought in, so my husband brought me a real bagel and some cream cheese. Just ate half and it tasted good. He also brought me some Canada Dry ginger ale which I much prefer to the hospital brand.
My counts are still going down, WBC at 0.5, platelets 72, ANC 500. Still a ways to go, but they say they will start Neupogen tomorrow.
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Karen's Stem Cell Transplant
Hey Karen,
Thanks for being one of the brave pioneers to post your SCT progress here at the Beacon!
I've always found Ativan to be superior to any other medication in taking care of nausea ... and I know others who've had various treatments, including SCT's, feel the same way.
Best of luck to you and your caregivers!
Steve
Thanks for being one of the brave pioneers to post your SCT progress here at the Beacon!
I've always found Ativan to be superior to any other medication in taking care of nausea ... and I know others who've had various treatments, including SCT's, feel the same way.
Best of luck to you and your caregivers!
Steve
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Karen's Stem Cell Transplant
Hi everyone,
Just wanted to post an update since I know I kind of disappeared after my last post from the hospital. I wound up having to deal with ongoing diarrhea (yuck) and nausea and a couple of unforseen complications, and just wasn't up to writing.
Here were the complications:
1) I started spiking fevers and they did cultures, but their protocol is that they also automatically start you on antibiotics, since the cultures take a couple of days to show anything (it turned out I had sepsis.) One of the antibiotics was vancomycin, which wound up affecting my kidney function. My creatinine levels went from normal to almost 5. So they took me off that drug and started lots and lots of fluids. The doctor told me the number would gradually return to normal, and fortunately that is what's happening - it's now at about 1.08.
2) My PICC line stopped working well, and an ultrasound revealed that there was a clot at the top of it. It had to be removed and I had to start blood thinners. First it was shots and now I'm on warfarin (Coumadin) for about the next two months. Fortunately I am not having any pain or side effects from this situation.
Despite these glitches, I was released to home after 16 days, which is just about average for my transplant unit. I've been home for just over three weeks now. When I first came home, I was exhausted - napping all day, taking the entire morning to shower/dress/eat breakfast, etc. Things are much better now! I still tire easily, but I feel much more like myself. I have been dealing with some ongoing nausea issues but it is slowly improving. I'm down to taking Zofran (ondansetron) maybe once or twice a day instead of around the clock.
There are still some foods I'm having trouble eating, particularly anything "bready" - I still get this kind of coating in my mouth which somehow interacts with these foods and turns them to paste. Ick! I just have to experiment and see what works and what doesn't. I was craving potato chips the other day and tried one - nope. Didn't work. On the other hand, for some reason fried foods, which I never used to eat because they didn't agree with me, work quite well. Watermelon is also very good - refreshing and seems to clear my mouth out.
Until recently I was also having a problem drinking plain water; it just tasted weird and made me gag, but that is also slowly improving. Still, I have better luck right now with seltzer, iced tea, lemonade, etc.
I'm still not driving (although I feel I probably could - but my husband is wary) but I did start back at work this week. I work from home, part-time, so I can ease into it.
My blood work all looks good right now - still too early to be doing the myeloma tests. Sometimes I almost forget why I put myself through all this! I'm seeing the doctor again on 8/20 and he says we will discuss maintenance then. I think he is going to recommend Velcade as I have responded well to it in the past.
I'd be happy to answer any other questions people may have, either in this thread or via private message!
Karen
Just wanted to post an update since I know I kind of disappeared after my last post from the hospital. I wound up having to deal with ongoing diarrhea (yuck) and nausea and a couple of unforseen complications, and just wasn't up to writing.
Here were the complications:
1) I started spiking fevers and they did cultures, but their protocol is that they also automatically start you on antibiotics, since the cultures take a couple of days to show anything (it turned out I had sepsis.) One of the antibiotics was vancomycin, which wound up affecting my kidney function. My creatinine levels went from normal to almost 5. So they took me off that drug and started lots and lots of fluids. The doctor told me the number would gradually return to normal, and fortunately that is what's happening - it's now at about 1.08.
2) My PICC line stopped working well, and an ultrasound revealed that there was a clot at the top of it. It had to be removed and I had to start blood thinners. First it was shots and now I'm on warfarin (Coumadin) for about the next two months. Fortunately I am not having any pain or side effects from this situation.
Despite these glitches, I was released to home after 16 days, which is just about average for my transplant unit. I've been home for just over three weeks now. When I first came home, I was exhausted - napping all day, taking the entire morning to shower/dress/eat breakfast, etc. Things are much better now! I still tire easily, but I feel much more like myself. I have been dealing with some ongoing nausea issues but it is slowly improving. I'm down to taking Zofran (ondansetron) maybe once or twice a day instead of around the clock.
There are still some foods I'm having trouble eating, particularly anything "bready" - I still get this kind of coating in my mouth which somehow interacts with these foods and turns them to paste. Ick! I just have to experiment and see what works and what doesn't. I was craving potato chips the other day and tried one - nope. Didn't work. On the other hand, for some reason fried foods, which I never used to eat because they didn't agree with me, work quite well. Watermelon is also very good - refreshing and seems to clear my mouth out.
Until recently I was also having a problem drinking plain water; it just tasted weird and made me gag, but that is also slowly improving. Still, I have better luck right now with seltzer, iced tea, lemonade, etc.
I'm still not driving (although I feel I probably could - but my husband is wary) but I did start back at work this week. I work from home, part-time, so I can ease into it.
My blood work all looks good right now - still too early to be doing the myeloma tests. Sometimes I almost forget why I put myself through all this! I'm seeing the doctor again on 8/20 and he says we will discuss maintenance then. I think he is going to recommend Velcade as I have responded well to it in the past.
I'd be happy to answer any other questions people may have, either in this thread or via private message!
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Karen's Stem Cell Transplant
Oh, I forgot to mention a couple of other things that people might want to know:
-- I've lost almost 20 lbs since I went into the transplant unit on June 25th. I had gone in overweight, though, from the steroids I'd been taking - and I still would have quite a ways to go before anyone would worry about me being underweight However, I am trying to figure out ways to get enough calories in for good health, despite the fact that my appetite is definitely not what it was. I'm especially having trouble with dinner/after dinner, as the nausea seems to want to make a reappearance then.
--I had my hair buzzed off while I was in the hospital (I'd already had it cut short just before going in), as it started to fall out and I was tired of seeing it all over the pillow. Not sure I would do that again as it wound up being quite uncomfortable having my bristly head against the pillows! I wound up having to wear one of those knitted caps to bed. Now that I'm home I think I am even balder, so it's actually more comfortable for sleeping now. I'm looking forward to having hair again...I did buy a wig but I really don't like wearing it much. I tend to just throw on a baseball cap.
--The only meds I'm taking right now are my usual Synthroid and Prilosec [omeprazole], and the warfarin. Normally I believe they also would have started me back on Acyclovir, but because of the blood clot, I was told I won't be taking that right now. I'm supposed to be getting back to taking my daily multivitamin and calcium supplements as well, but I need to find some non-pill formats (gummies, maybe?) as the pills are just too big for me to get down right now.
Karen
-- I've lost almost 20 lbs since I went into the transplant unit on June 25th. I had gone in overweight, though, from the steroids I'd been taking - and I still would have quite a ways to go before anyone would worry about me being underweight
However, I am trying to figure out ways to get enough calories in for good health, despite the fact that my appetite is definitely not what it was. I'm especially having trouble with dinner/after dinner, as the nausea seems to want to make a reappearance then. --I had my hair buzzed off while I was in the hospital (I'd already had it cut short just before going in), as it started to fall out and I was tired of seeing it all over the pillow. Not sure I would do that again as it wound up being quite uncomfortable having my bristly head against the pillows! I wound up having to wear one of those knitted caps to bed. Now that I'm home I think I am even balder, so it's actually more comfortable for sleeping now. I'm looking forward to having hair again...I did buy a wig but I really don't like wearing it much. I tend to just throw on a baseball cap.
--The only meds I'm taking right now are my usual Synthroid and Prilosec [omeprazole], and the warfarin. Normally I believe they also would have started me back on Acyclovir, but because of the blood clot, I was told I won't be taking that right now. I'm supposed to be getting back to taking my daily multivitamin and calcium supplements as well, but I need to find some non-pill formats (gummies, maybe?) as the pills are just too big for me to get down right now.
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Karen's Stem Cell Transplant
It's wonderful to see you back in the forum, Karen. Thanks for the detailed updates. I'm sorry to hear about the complications you had during the transplant process, but it seems like you got through them okay and seem to be on the upswing.
Did your doctors ever talk with you about how serious things were when you had sepsis? I know that others here have said they've experienced sepsis -- I can't remember if it was during transplant or not -- but, gosh, from what I've heard, sepsis is pretty serious.
In any case, it's great to hear that you're doing better and even able to do a little work. Thanks again for keeping us posted.
Did your doctors ever talk with you about how serious things were when you had sepsis? I know that others here have said they've experienced sepsis -- I can't remember if it was during transplant or not -- but, gosh, from what I've heard, sepsis is pretty serious.
In any case, it's great to hear that you're doing better and even able to do a little work. Thanks again for keeping us posted.
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