Hi Dogmom:
I agree this is the most nerve racking time for both the patient and the spouse. Engraftment often does cause a fever. A more severe reaction during engraftment is called "engraftment syndrome." My wife did have that. They had to assume at first that the fever was due to some type of infection, and gave "broad spectrum" antibiotics. After two days, all the cultures came back negative, so they assumed it was engraftment syndrome. They then gave IV methylprednisone, and within a day, everything died down, as all her numbers started coming back, and she skated the rest of the way. So, let the team do its work, and the best of luck to you both, and I hope the down hill starts soon. Good luck.
Forums
Re: Dear hubby's stem cell transplant saga
JPC,
Yes I have been reading up on engraftment syndrome. If all the cultures are negative, he certainly does meet the criteria. I also read how steroids are given with great success in that case.
I am anxious to hear the doctor's thoughts.
Yes I have been reading up on engraftment syndrome. If all the cultures are negative, he certainly does meet the criteria. I also read how steroids are given with great success in that case.
I am anxious to hear the doctor's thoughts.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Dear hubby's stem cell transplant saga
The are keeping up with the antibiotics and starting him on steroids. The doctor plans on keeping him till his counts start to rise. He does not think he has a major infection at this time. Just engraftment. I hope the steroids make him feel better.
I came back to the motel to shower and gather a few more things and, depending on how he is tomorrow, since he will still be under the great care of the nurses and medical staff, I may take the opportunity to drive home and see our little dog, check mail, etc. since it has been two weeks since we have been gone. I think I need it. It will reground me. It is only about a 45-minute to hour drive depending on traffic.
I came back to the motel to shower and gather a few more things and, depending on how he is tomorrow, since he will still be under the great care of the nurses and medical staff, I may take the opportunity to drive home and see our little dog, check mail, etc. since it has been two weeks since we have been gone. I think I need it. It will reground me. It is only about a 45-minute to hour drive depending on traffic.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Dear hubby's stem cell transplant saga
Cathy,
A drive home might do wonders. It is such a long and intense period for both patient and spouse. My husband went out for an hour walk each day that we went in to the day hospital. I'm sure it helped him to stay grounded. Hang in there - you are so important in all of this!
A drive home might do wonders. It is such a long and intense period for both patient and spouse. My husband went out for an hour walk each day that we went in to the day hospital. I'm sure it helped him to stay grounded. Hang in there - you are so important in all of this!
Re: Dear hubby's stem cell transplant saga
When I got back from the motel from taking a shower, his fever had broken and it was 98.3 F (36.8 C)! He is getting a second unit of platelets now that his fever has broken.
Keep good thoughts that it will stay down.
Keep good thoughts that it will stay down.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Dear hubby's stem cell transplant saga
Dear dogmom,
I discovered this thread tonight (during one of my too frequent gaps in sleep) and am posting for the first time here at the Beacon.
I guess I just wanted you to know that someone else is going through what you are going through at the very same time in much the same way.
My other half started his ASCT on the same day as your husband, also as an outpatient. We were supposed to start a week before you, but we both got the flu, which pushed us back a week – and scared us a lot. I guess we were lucky in that it seemed the shoe dropped before we even started!
So far we've been lucky. The flu seemed worse to us both than this transplant, and his side effects seem no worse than the induction chemotherapy. We were told, and expected, it would be much worse.
We also live only 3 miles from the hospital so not only are we not in the hospital, but we are at home with daily infusion center visits. You are to be commended for doing this in a motel! I wish I could give you some of the comfort that comes with your own home and more of your own things.
Everyone who goes through this is different. We've had no mucositis but too much cystitis from the melphalan, and significant fatigue. We do IV fluids every day regardless, which he feels helps with his strength and GI tract and he was magnesium depleted in the middle days.
He has had a few food issues; particularly intolerant to sweets, so no Pedialyte / Boost / Ensure / juice / soda / etc. Heightened smell and everything starts out too strong.
We're kind of eating Paleo - hard boiled eggs, ground bison, bone broths, pureed poached chicken, canned cold water fish - with green tea matcha and lots of herbs and antimicrobial spices. Also yogurt and creme fraiche. Veggies and soups pureed. Lots of mashed potatoes.
No fever here and I hope your husband's is engraftment. We have used cetirizine (Zyrtec) twice daily and some Tylenol (paracetamol, acetaminophen) since the Neupogen was started as it causes him a lot of boney flu-like symptoms.
His counts mirror your husband's with a platelet transfusion on Sunday but no need for red blood cells yet. His WBCs just became detectable yesterday (after 5 days at <0.1) with a WBC of 0.4 and neutrophils at 0.1, but enough boney pain from the Neupogen that i'm hoping for big things today.
I believe you both will get through this as I believe we will.
I hope today brings you good news.
I discovered this thread tonight (during one of my too frequent gaps in sleep) and am posting for the first time here at the Beacon.
I guess I just wanted you to know that someone else is going through what you are going through at the very same time in much the same way.
My other half started his ASCT on the same day as your husband, also as an outpatient. We were supposed to start a week before you, but we both got the flu, which pushed us back a week – and scared us a lot. I guess we were lucky in that it seemed the shoe dropped before we even started!
So far we've been lucky. The flu seemed worse to us both than this transplant, and his side effects seem no worse than the induction chemotherapy. We were told, and expected, it would be much worse.
We also live only 3 miles from the hospital so not only are we not in the hospital, but we are at home with daily infusion center visits. You are to be commended for doing this in a motel! I wish I could give you some of the comfort that comes with your own home and more of your own things.
Everyone who goes through this is different. We've had no mucositis but too much cystitis from the melphalan, and significant fatigue. We do IV fluids every day regardless, which he feels helps with his strength and GI tract and he was magnesium depleted in the middle days.
He has had a few food issues; particularly intolerant to sweets, so no Pedialyte / Boost / Ensure / juice / soda / etc. Heightened smell and everything starts out too strong.
We're kind of eating Paleo - hard boiled eggs, ground bison, bone broths, pureed poached chicken, canned cold water fish - with green tea matcha and lots of herbs and antimicrobial spices. Also yogurt and creme fraiche. Veggies and soups pureed. Lots of mashed potatoes.
No fever here and I hope your husband's is engraftment. We have used cetirizine (Zyrtec) twice daily and some Tylenol (paracetamol, acetaminophen) since the Neupogen was started as it causes him a lot of boney flu-like symptoms.
His counts mirror your husband's with a platelet transfusion on Sunday but no need for red blood cells yet. His WBCs just became detectable yesterday (after 5 days at <0.1) with a WBC of 0.4 and neutrophils at 0.1, but enough boney pain from the Neupogen that i'm hoping for big things today.
I believe you both will get through this as I believe we will.
I hope today brings you good news.
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Dear hubby's stem cell transplant saga
Rick, I am so glad your other half has not had significant fever with engraftment. Thank you for sharing your story and I hope all goes well and your other half achieves a long remission.
My husband's fever has been normal for many hours now with no Tylenol. He feels so much better and even ate a small dinner last night and has ordered pancakes for breakfast. Hope he can eat them. They are one of his favorites. He tolerated his second platelet infusion well yesterday. His labs today are WBC is 0.2 , hgb is 8.0 (which is up some from yesterday and not going down). His platelets are holding at 25,000. This is what they were yesterday after platelet infusion so it is hard to tell if he is making those yet or not. But he is making white cells so we hope the worst of the engraftment symptoms are over.
To everyone else, thanks for the encouragement! You guys rock! I think it is harder to be away from your home – your comfort area, your safe zone – when going through this. I was ready for a lower grade fever but not 103 F. It really threw me off my game plan.
He is up, shaved and is going to get a shower. Off all IV fluids unless it is hooked up for a period of time to give a med.
I do plan on driving to our home (about an hour away) while he is still in the hospital and under the care of a great staff. We have been gone from home 2 weeks now and I need to check mail, pick up a few things, etc. Our son has been house sitting and taking care of our fur baby, but I think it will do some good for me to touch base at home. Please keep good thoughts that the worst is behind him.
My husband's fever has been normal for many hours now with no Tylenol. He feels so much better and even ate a small dinner last night and has ordered pancakes for breakfast. Hope he can eat them. They are one of his favorites. He tolerated his second platelet infusion well yesterday. His labs today are WBC is 0.2 , hgb is 8.0 (which is up some from yesterday and not going down). His platelets are holding at 25,000. This is what they were yesterday after platelet infusion so it is hard to tell if he is making those yet or not. But he is making white cells so we hope the worst of the engraftment symptoms are over.
To everyone else, thanks for the encouragement! You guys rock! I think it is harder to be away from your home – your comfort area, your safe zone – when going through this. I was ready for a lower grade fever but not 103 F. It really threw me off my game plan.
He is up, shaved and is going to get a shower. Off all IV fluids unless it is hooked up for a period of time to give a med.
I do plan on driving to our home (about an hour away) while he is still in the hospital and under the care of a great staff. We have been gone from home 2 weeks now and I need to check mail, pick up a few things, etc. Our son has been house sitting and taking care of our fur baby, but I think it will do some good for me to touch base at home. Please keep good thoughts that the worst is behind him.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Dear hubby's stem cell transplant saga
Good morning Cathy.
I'm very happy to read that your hubby is improving. The fever can be really scary, I know. My husband's spiked to 104.5 F (40.3 C) one night a couple days after he was discharged after his transplant. We wound up in the ER at 3:00 a.m. - he was incoherent at this point and I was terrified. Initially he was diagnosed with pneumonia, but that was later ruled out and there never was a clear reason given for the fever. They kept him a couple of days as a precaution and it was all smooth sailing after that - relatively speaking anyway.
I pray everything continues to improve for you both and that he was able to enjoy those pancakes.
Debra
I'm very happy to read that your hubby is improving. The fever can be really scary, I know. My husband's spiked to 104.5 F (40.3 C) one night a couple days after he was discharged after his transplant. We wound up in the ER at 3:00 a.m. - he was incoherent at this point and I was terrified. Initially he was diagnosed with pneumonia, but that was later ruled out and there never was a clear reason given for the fever. They kept him a couple of days as a precaution and it was all smooth sailing after that - relatively speaking anyway.
I pray everything continues to improve for you both and that he was able to enjoy those pancakes.
Debra
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reece93 - Name: reece93
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 2014
- Age at diagnosis: 57
Re: Dear hubby's stem cell transplant saga
I have been reading about your journey as I sit in my husband's hospital room waiting for his melphalan to arrive. Tomorrow is the ASCT day. We are nervous, but very hopeful for a good outcome here.
You are clearly such a wonderful support for your husband, and I hope to be providing the same. He will be inpatient for 2-3 weeks, rather than going home or staying in a hotel. I guess the protocol is different at each hospital.
I will be thinking about you and wishing you well. Thanks for providing such great insight and perspective on the process.
You are clearly such a wonderful support for your husband, and I hope to be providing the same. He will be inpatient for 2-3 weeks, rather than going home or staying in a hotel. I guess the protocol is different at each hospital.
I will be thinking about you and wishing you well. Thanks for providing such great insight and perspective on the process.
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JenA - Name: JenA
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: 2/2016
- Age at diagnosis: 53
Re: Dear hubby's stem cell transplant saga
Day +13
He is so much better. He is enjoying French toast and bacon and eating the most he has in 3 or 4 days. His WBC is 0.515, up from 0.2 yesterday. His platelet level is 19,000, which is down, but he did have a platelet infusion yesterday, so it is hard to tell if he is making those yet. Hemoglobin is 7.7, holding for past 3 days.
He walked a half mile around the halls before breakfast (ten laps is a mile, he did five laps. If he continues to do well the doctor said he will be discharged back to the hotel tomorrow.
I spent most of the day at home yesterday. It was good for me to be there and recharge in my most favorite place on earth. Our little dog was so glad to see me. If all continues to do well we have it ok'd Sunday to bring him up to the motel to stay with us the rest of the time. I think it will lift my husband's spirits even more. It did mine yesterday to see him.
Thanks for all the support.
He is so much better. He is enjoying French toast and bacon and eating the most he has in 3 or 4 days. His WBC is 0.515, up from 0.2 yesterday. His platelet level is 19,000, which is down, but he did have a platelet infusion yesterday, so it is hard to tell if he is making those yet. Hemoglobin is 7.7, holding for past 3 days.
He walked a half mile around the halls before breakfast (ten laps is a mile, he did five laps. If he continues to do well the doctor said he will be discharged back to the hotel tomorrow.
I spent most of the day at home yesterday. It was good for me to be there and recharge in my most favorite place on earth. Our little dog was so glad to see me. If all continues to do well we have it ok'd Sunday to bring him up to the motel to stay with us the rest of the time. I think it will lift my husband's spirits even more. It did mine yesterday to see him.
Thanks for all the support.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
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