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Re: Inpatient autologous stem cell transplant at UC Davis
RT, How are you?!?
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Inpatient autologous stem cell transplant at UC Davis
Day +22
Well, it has been 8 days since my release from the hospital, but unfortunately I am back in the hospital.
Felt pretty rough the first week home – weakness, queasiness and lack of appetite, and some fever. On Day 20 I went to my clinic appointment and lab work, and they wanted me to stay overnight at the hospital for tests and ‘observation’. My pulse was high, blood pressure low, and liver enzymes elevated. They were worried I might be getting sepsis, so did some blood cultures. One of the cultures was positive, so I’m currently getting IV antibiotics and awaiting further details on the tests re: the exact bacteria that was found.
Strangely, I’m not running a fever, so they think there is a possibility it is ‘false positive’. It is a bummer to be back in the hospital, especially since my appetite started coming back and I started enjoying my food again. Hospital food definitely kills my appetite!
I guess sepsis is a very dangerous situation for transplant patients, so they’re being very cautious before releasing me. They ran a new set of tests to verify the first set. I guess I just have to be patient to get past this period where hospitalization is still possible. I’m not sure they every figured out what the elevated liver enzymes were caused by, but they took me off of fluconazole thinking that might be the culprit. I think my latest liver enzyme tests had come down.
So even though I’m in the hospital, I’m actually feeling better in many ways. Queasiness and lack of appetite has been one of the hardest parts of recovery, and that part has improved significantly in the last few days. When you get home from hospital, be sure to drink LOTS of fluids, even to the point of measuring your fluid intake. It is easy to become dehydrated, and I think that was a problem for me.
RT
Peace to all suffering from the symptoms of myeloma and its pharmaceutical interventions.
Well, it has been 8 days since my release from the hospital, but unfortunately I am back in the hospital.
Felt pretty rough the first week home – weakness, queasiness and lack of appetite, and some fever. On Day 20 I went to my clinic appointment and lab work, and they wanted me to stay overnight at the hospital for tests and ‘observation’. My pulse was high, blood pressure low, and liver enzymes elevated. They were worried I might be getting sepsis, so did some blood cultures. One of the cultures was positive, so I’m currently getting IV antibiotics and awaiting further details on the tests re: the exact bacteria that was found.
Strangely, I’m not running a fever, so they think there is a possibility it is ‘false positive’. It is a bummer to be back in the hospital, especially since my appetite started coming back and I started enjoying my food again. Hospital food definitely kills my appetite!
I guess sepsis is a very dangerous situation for transplant patients, so they’re being very cautious before releasing me. They ran a new set of tests to verify the first set. I guess I just have to be patient to get past this period where hospitalization is still possible. I’m not sure they every figured out what the elevated liver enzymes were caused by, but they took me off of fluconazole thinking that might be the culprit. I think my latest liver enzyme tests had come down.
So even though I’m in the hospital, I’m actually feeling better in many ways. Queasiness and lack of appetite has been one of the hardest parts of recovery, and that part has improved significantly in the last few days. When you get home from hospital, be sure to drink LOTS of fluids, even to the point of measuring your fluid intake. It is easy to become dehydrated, and I think that was a problem for me.
RT
Peace to all suffering from the symptoms of myeloma and its pharmaceutical interventions.
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Inpatient autologous stem cell transplant at UC Davis
Hello RT.
Thank you very much for the update. I hope these difficulties pass quickly. Good luck to you.
Thank you very much for the update. I hope these difficulties pass quickly. Good luck to you.
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JPC - Name: JPC
Re: Inpatient autologous stem cell transplant at UC Davis
Hi RT,
So sorry to hear about you being back in there hospital.
I had sepsis starting at Day +8. I ended up in the ICU for three days. It was a rough period, but I made it through, in large part because of very good medical care. You will make it through this too, whether yours turns out to be a false alarm or not.
Hang in there! Things will get better soon!
Mike
So sorry to hear about you being back in there hospital.
I had sepsis starting at Day +8. I ended up in the ICU for three days. It was a rough period, but I made it through, in large part because of very good medical care. You will make it through this too, whether yours turns out to be a false alarm or not.
Hang in there! Things will get better soon!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Inpatient autologous stem cell transplant at UC Davis
Day 32
It’s been a while since my last post, where I mentioned I was being monitored for a blood bacterial infection. Well, it turned out that I did have one, after all. After they let me out of the hospital after my evaluation, they called me back the next day and told me that one of the ‘cultures’ had turned out positive, and they wanted me back in the hospital! (I guess it takes 3 to 4 days to get the final results for that test). So off I went for another overnight stint in the hospital and more IV antibiotics. They thought that the bacterial infection was probably caused by my chest catheter – a fairly common problem, apparently.
As infections go, though, mine wasn’t terribly bad I guess. I wasn’t even running a fever in the hospital, so they sent me home the next day with a 10-day course of antibiotics, which they thought would work well in my case.
My biggest challenge in the last few weeks has been a very queasy stomach, and I’ve been taking anti-nausea medication – Ativan (lorazepam) – on most days. I’m sure the antibiotics (Augmentin - amoxicillin / clavulanate combination) have been a significant factor in the nausea. Just finished them two days ago, so hopefully will get some relief in the queasy stomach department soon (?)
Unfortunately I’m supposed to be taking Bactrim (another antibiotic) 3 days a week, and they want me on this for six months. I think six months is too long. I can’t see how my digestive system can possibly recover if I am continuously taking Bactrim for 6 months.
Opinions on this anyone? How soon before your nausea went away after transplant?
Nausea is really wearing me down. I'm not supposed to have 'live' probiotics for the first 100 days, though I'm taking non-dairy pasteurized coconut 'yogurt' to try to get some friendly bacteria into my gut (I don't eat dairy). How can I help my poor gut recover? I am managing to eat enough to keep my weight stable, but so many good foods I cannot face, because of the nausea. Can only seem to tolerate an extremely bland diet. Only lost about 10 lbs from the transplant, so I guess that is good.
At my appointment last Tuesday, the doctor told me I was doing really well, in terms of the recovery of my blood counts. My red blood cells are almost in the normal range, which is great.
My immune system might be weak, but it’s definitely fighting it’s way back. Two days after my most recent hospital overnight, I got a head cold. A simple cold can be quite dangerous for a transplant patient with no immune system. I am happy to report that after 8 days my cold is clearing up nicely, so I must have at least a bit of an immune system! I have hardly been out of the house in the last week, though. Not even for walks. Was pretty bummed out about getting a cold, so have been cautious about staying indoors. Hoping I’ll be well enough for some short walks this week.
RT
Peace to all suffering from the symptoms of myeloma and its pharmaceutical interventions.
It’s been a while since my last post, where I mentioned I was being monitored for a blood bacterial infection. Well, it turned out that I did have one, after all. After they let me out of the hospital after my evaluation, they called me back the next day and told me that one of the ‘cultures’ had turned out positive, and they wanted me back in the hospital! (I guess it takes 3 to 4 days to get the final results for that test). So off I went for another overnight stint in the hospital and more IV antibiotics. They thought that the bacterial infection was probably caused by my chest catheter – a fairly common problem, apparently.
As infections go, though, mine wasn’t terribly bad I guess. I wasn’t even running a fever in the hospital, so they sent me home the next day with a 10-day course of antibiotics, which they thought would work well in my case.
My biggest challenge in the last few weeks has been a very queasy stomach, and I’ve been taking anti-nausea medication – Ativan (lorazepam) – on most days. I’m sure the antibiotics (Augmentin - amoxicillin / clavulanate combination) have been a significant factor in the nausea. Just finished them two days ago, so hopefully will get some relief in the queasy stomach department soon (?)
Unfortunately I’m supposed to be taking Bactrim (another antibiotic) 3 days a week, and they want me on this for six months. I think six months is too long. I can’t see how my digestive system can possibly recover if I am continuously taking Bactrim for 6 months.
Opinions on this anyone? How soon before your nausea went away after transplant?
Nausea is really wearing me down. I'm not supposed to have 'live' probiotics for the first 100 days, though I'm taking non-dairy pasteurized coconut 'yogurt' to try to get some friendly bacteria into my gut (I don't eat dairy). How can I help my poor gut recover? I am managing to eat enough to keep my weight stable, but so many good foods I cannot face, because of the nausea. Can only seem to tolerate an extremely bland diet. Only lost about 10 lbs from the transplant, so I guess that is good.
At my appointment last Tuesday, the doctor told me I was doing really well, in terms of the recovery of my blood counts. My red blood cells are almost in the normal range, which is great.
My immune system might be weak, but it’s definitely fighting it’s way back. Two days after my most recent hospital overnight, I got a head cold. A simple cold can be quite dangerous for a transplant patient with no immune system. I am happy to report that after 8 days my cold is clearing up nicely, so I must have at least a bit of an immune system! I have hardly been out of the house in the last week, though. Not even for walks. Was pretty bummed out about getting a cold, so have been cautious about staying indoors. Hoping I’ll be well enough for some short walks this week.
RT
Peace to all suffering from the symptoms of myeloma and its pharmaceutical interventions.
-
RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Inpatient autologous stem cell transplant at UC Davis
RT -
Sorry to hear that you're still not feeling great. I wonder if the Bactrim will have the same effects the other antibiotics have had on your GI tract? If so, I can't imagine being on it for months and I would think your doctor would need to work with you on finding a better solution to potential infections. You don't want an infection but you don't want to weaken yourself through starvation, either!
One thing that helped me when I got back home was to get out and walk as much as possible. Initially, it was just down to the end of the block and back, but after a couple of weeks, I was going for much longer walks on a daily basis. You'll of course have to see what your body has to say about this, but I felt a lot better once I was out and about.
Best wishes and thanks for the update!
Sorry to hear that you're still not feeling great. I wonder if the Bactrim will have the same effects the other antibiotics have had on your GI tract? If so, I can't imagine being on it for months and I would think your doctor would need to work with you on finding a better solution to potential infections. You don't want an infection but you don't want to weaken yourself through starvation, either!
One thing that helped me when I got back home was to get out and walk as much as possible. Initially, it was just down to the end of the block and back, but after a couple of weeks, I was going for much longer walks on a daily basis. You'll of course have to see what your body has to say about this, but I felt a lot better once I was out and about.
Best wishes and thanks for the update!
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Inpatient autologous stem cell transplant at UC Davis
Hi Mike F,
I don't know how much of the nausea is directly related to antibiotics and how much is related to recovering from the chemo and the damage it does to the gut lining. Probably some combination of both.
I just had 2 days off all antibiotics, and I was still having some nausea. Today I started the Bactrim again, and almost barfed a few hours later. Took some Ativan and managed to prevent barfing. Since this is the Beacon, I will mention my very loose stools and frequent bowel movements too. Not like the level of diarrhea I had in the hospital, but still very far from normal. I have so far not taken the anti-diarrhea meds they gave me.
Seeing the doctor in a week and am hoping that I'll see some improvement before then.
I do hope to do more walking and managed a good walk today after the Ativan kicked in and I was able to eat lunch. I think I need to snack more. I noticed that being quite hungry makes the nausea worse.
RT
I don't know how much of the nausea is directly related to antibiotics and how much is related to recovering from the chemo and the damage it does to the gut lining. Probably some combination of both.
I just had 2 days off all antibiotics, and I was still having some nausea. Today I started the Bactrim again, and almost barfed a few hours later. Took some Ativan and managed to prevent barfing. Since this is the Beacon, I will mention my very loose stools and frequent bowel movements too. Not like the level of diarrhea I had in the hospital, but still very far from normal. I have so far not taken the anti-diarrhea meds they gave me.
Seeing the doctor in a week and am hoping that I'll see some improvement before then.
I do hope to do more walking and managed a good walk today after the Ativan kicked in and I was able to eat lunch. I think I need to snack more. I noticed that being quite hungry makes the nausea worse.
RT
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Inpatient autologous stem cell transplant at UC Davis
RadiantTiger! Do not despair about the nausea! I had my stem cell transplant in October 2014 and I thought the nausea would never end! In the interim, don't try to eat big meals or, for that matter, any regular meals at all. I pretty much survived on chocolate milk, tomato juice, vanilla Ensure (the 350-calorie type), Coca Cola, canned Progresso soups, crackers, toast, and apple sauce.
It took nearly 3 months for me to be able to eat somewhat normally. I still have an occasional day where I am mildly nauseous for no reason. I think we all react differently to the ASCT. Try not to compare yourself to people who write into the forum about how they ran a marathon after 60 days or went on a long bike ride. Most people cannot do that nor should they expect to. I was a reasonably fit person before I became ill, but I lost a lot of muscle mass due to treatment and was pretty weak after the SCT. Recently, I have gone for physical therapy and begun exercising again. This has helped tremendously! I think nearly everyone who undergoes an SCT should be offered physical therapy.
As far as the nausea goes, it will pass. Eat cold or room temperature food. If you can avoid cooking, do so.
Also, keep your toothbrush and toothpaste separate from your family's. Also, use paper towels for face and hands in the bathroom and take a fresh towel when you shower. I found that these precautions really helped me to avoid colds that passed through my house
Good luck and be patient! I had very good results from my SCT – stringent complete response (sCR)!! Hang in there!!
It took nearly 3 months for me to be able to eat somewhat normally. I still have an occasional day where I am mildly nauseous for no reason. I think we all react differently to the ASCT. Try not to compare yourself to people who write into the forum about how they ran a marathon after 60 days or went on a long bike ride. Most people cannot do that nor should they expect to. I was a reasonably fit person before I became ill, but I lost a lot of muscle mass due to treatment and was pretty weak after the SCT. Recently, I have gone for physical therapy and begun exercising again. This has helped tremendously! I think nearly everyone who undergoes an SCT should be offered physical therapy.
As far as the nausea goes, it will pass. Eat cold or room temperature food. If you can avoid cooking, do so.
Also, keep your toothbrush and toothpaste separate from your family's. Also, use paper towels for face and hands in the bathroom and take a fresh towel when you shower. I found that these precautions really helped me to avoid colds that passed through my house
Good luck and be patient! I had very good results from my SCT – stringent complete response (sCR)!! Hang in there!!
Re: Inpatient autologous stem cell transplant at UC Davis
Hello RT:
Sorry that the bumps in the road are continuing. If you are having difficulty with particular treatments, then you should have a discussion with your medical team. It may the case that they could modify the treatment to avoid the problems. As you are averse to Bactrim, I understand, as it's the same in my wife's case, she had unpleasant reactions to antibiotics her whole life, and did not like the prospects of having to take antibiotics. Post transplant, they did not prescribe antibiotics after discharge.
There may be a very good reason for the Bactrim. I think its a sulfur based antibiotic. I think many people have problems with that class of antibiotic. In my wife's case, they did prescribe a treatment to ward off pneumonia. The treatment was called pentamidine (not an antibiotic). It was somewhat inconvenient in that once a month she had to go under a hood and breath this for 40 minutes. She said it smelled bad, and screwed up her taste for a day. It was over, however, in a day, and after 6 treatments, they stopped it.
I think the underlying issue is that getting pneumonia right now would be very bad. You might ask your doctor about alternative approaches to do that. I think that after its all said and done, and you get through to the other side, that this will be a small annoyance. Perhaps, Bactrim, since its bothering you, could be modified, but I think its probably wise to take something at this time. Another antibiotic that is said to work well in the multiple myeloma setting is Biaxin, FYI. Good luck to you.
Sorry that the bumps in the road are continuing. If you are having difficulty with particular treatments, then you should have a discussion with your medical team. It may the case that they could modify the treatment to avoid the problems. As you are averse to Bactrim, I understand, as it's the same in my wife's case, she had unpleasant reactions to antibiotics her whole life, and did not like the prospects of having to take antibiotics. Post transplant, they did not prescribe antibiotics after discharge.
There may be a very good reason for the Bactrim. I think its a sulfur based antibiotic. I think many people have problems with that class of antibiotic. In my wife's case, they did prescribe a treatment to ward off pneumonia. The treatment was called pentamidine (not an antibiotic). It was somewhat inconvenient in that once a month she had to go under a hood and breath this for 40 minutes. She said it smelled bad, and screwed up her taste for a day. It was over, however, in a day, and after 6 treatments, they stopped it.
I think the underlying issue is that getting pneumonia right now would be very bad. You might ask your doctor about alternative approaches to do that. I think that after its all said and done, and you get through to the other side, that this will be a small annoyance. Perhaps, Bactrim, since its bothering you, could be modified, but I think its probably wise to take something at this time. Another antibiotic that is said to work well in the multiple myeloma setting is Biaxin, FYI. Good luck to you.
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JPC - Name: JPC
Re: Inpatient autologous stem cell transplant at UC Davis
Hello everyone,
It is Day +86, and I am happy to report that I'm feeling quite well. Energy level has increased significantly, and I can easily walk 4 miles without major fatigue. It is so great to have energy again.
I was dealing with nausea until recently. The Bactrim antibiotic was indeed a source of the nausea. I had stopped taking it for a couple of weeks, and my nausea rapidly improved. Of course, my doctor is concerned about my risk for pneumonia, so we talked about it yesterday, and I agreed to try a lower dose of the Bactrim and also try combining it with probiotic foods. We'll see how that goes. I will see my integrative medicine doctor soon to see if he has any suggestions to further heal my gut. My gut is vastly improved, but is still healing.
My hemoglobin is now over 13, which is the highest it's been for a long time. White blood cells are still low, but this is to be expected. I had one mild cold shortly after my last hospital release, but I got over it and am now cold-free. My challenge now is to stop myself from over-doing it - like exposing myself to lots of people with viruses and traveling. I try to get lots of sleep, and I think that's been key in recovering my energy. I will get the results of my post-transplant SPEP and IgA light chains in about 2 weeks.
I can't say I notice anything like 'chemo-brain', which was a big concern for me, since my work requires significant brain-power.
For now life is good, and I feel grateful and happy.
RT
Peace to all suffering from the symptoms of myeloma and its pharmaceutical interventions.
It is Day +86, and I am happy to report that I'm feeling quite well. Energy level has increased significantly, and I can easily walk 4 miles without major fatigue. It is so great to have energy again.
I was dealing with nausea until recently. The Bactrim antibiotic was indeed a source of the nausea. I had stopped taking it for a couple of weeks, and my nausea rapidly improved. Of course, my doctor is concerned about my risk for pneumonia, so we talked about it yesterday, and I agreed to try a lower dose of the Bactrim and also try combining it with probiotic foods. We'll see how that goes. I will see my integrative medicine doctor soon to see if he has any suggestions to further heal my gut. My gut is vastly improved, but is still healing.
My hemoglobin is now over 13, which is the highest it's been for a long time. White blood cells are still low, but this is to be expected. I had one mild cold shortly after my last hospital release, but I got over it and am now cold-free. My challenge now is to stop myself from over-doing it - like exposing myself to lots of people with viruses and traveling. I try to get lots of sleep, and I think that's been key in recovering my energy. I will get the results of my post-transplant SPEP and IgA light chains in about 2 weeks.
I can't say I notice anything like 'chemo-brain', which was a big concern for me, since my work requires significant brain-power.
For now life is good, and I feel grateful and happy.
RT
Peace to all suffering from the symptoms of myeloma and its pharmaceutical interventions.
-
RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
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