My sister had an autologous stem cell transplant for multiple myeloma in mid March. On day 10 (after engraftment) she ended up in the hospital with "engraftment syndrome". She was in the hospital for 8 days and came home finally after being treated with steroids.
Then she got an allergic reaction when she was given platelets and now is having another allergic reaction from a new med called Dapsone (diamino-diphenyl sulfone). She is being treated once again with steroids and they are now tapering them, but now she has nausea and diarrhea.
She was told that, for the next 2 months, she should be feeling good and building up her body for the next transplant in June. I question if she should have another transplant and if she has GVHD (graft versus host disease).
Any suggestions or advice would be greatly appreciated.
Forums
Re: Engraftment syndrome
Hi there,
She cannot get GVHD with an autologous transplant as she is receiving her own stem cells.
She cannot get GVHD with an autologous transplant as she is receiving her own stem cells.
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Nurse
Re: Engraftment syndrome
Of course you can get GVHD with an Auto transplant. It's essentially called engraftment syndrome, but I came down with it during my 2nd transplant in April.
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chrismolinaro
Re: Engraftment syndrome
Actually, I think Nurse is correct -- at least at a technical level. There are aspects of engraftment syndrome that make it seem like Graft-Versus-Host-Disease (GVHD), but I'm pretty sure the latter is MUCH more serious.
Saying that the two are the same is, I think, a bit like saying the common cold is the same as pneumonia. Both of them have similar symptoms in many cases, but pneumonia is very much a different, much more serious, condition.
There is a technical discussion of engraftment syndrome, including a definition and what can be done to avoid it, at this link:
S Mossad et al, "Steroids prevent engraftment syndrome after autologous hematopoietic stem cell transplantation without increasing the risk of infection," Bone Marrow Transplantation, 2005
The article says that engraftment syndrome "is generally described as a combination of noninfectious fever and skin rash developing at the time of initial neutrophil recovery, occurring about 7 days after AHSCT, with a median duration of 11 days." It goes on to say that the syndrome "resembles" GVHD.
Saying that the two are the same is, I think, a bit like saying the common cold is the same as pneumonia. Both of them have similar symptoms in many cases, but pneumonia is very much a different, much more serious, condition.
There is a technical discussion of engraftment syndrome, including a definition and what can be done to avoid it, at this link:
S Mossad et al, "Steroids prevent engraftment syndrome after autologous hematopoietic stem cell transplantation without increasing the risk of infection," Bone Marrow Transplantation, 2005
The article says that engraftment syndrome "is generally described as a combination of noninfectious fever and skin rash developing at the time of initial neutrophil recovery, occurring about 7 days after AHSCT, with a median duration of 11 days." It goes on to say that the syndrome "resembles" GVHD.
Re: Engraftment syndrome
I'm quite curious about this topic. EJ developed many symptoms of auto-GVHD during his SCT, including rashes that covered his entire body, jaundice around the eyes, and a very high fever. They eventually told us it was an allergy to two penecillin type drugs, but I'm not so sure. Here's another interesting article on auto-GVHD.
J Kline et al, "Autologous graft-versus-host disease: harnessing anti-tumor immunity through impaired self-tolerance," Bone Marrow Transplantation, 2008
Does anyone have any experience with this?
Lyn
J Kline et al, "Autologous graft-versus-host disease: harnessing anti-tumor immunity through impaired self-tolerance," Bone Marrow Transplantation, 2008
Does anyone have any experience with this?
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Engraftment syndrome
After going home from the hospital, my home care nurse detected I had a fever, and I had rashes, so she notified my doctor.
I went in to be evaluated and they did blood counts and white was still ok. So my doc said it must be engraftment syndrome, that is was not uncommon, and to watch for worsening symptoms. Doc also prescribed antibiotics, "just in case"
I went in to be evaluated and they did blood counts and white was still ok. So my doc said it must be engraftment syndrome, that is was not uncommon, and to watch for worsening symptoms. Doc also prescribed antibiotics, "just in case"
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guest
Re: Engraftment syndrome
Thank you for your reply. I guess my real question is how do you tell the difference between "engraftment syndrome" and an allergy to a drug?
Thanks!
Lyn
Thanks!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Engraftment syndrome
This is a very interesting topic and aspects of it remain somewhat controversial.
As stated above, engraftment syndrome represents a self-limited episode of fevers and rash associated with engraftment of neutrophils and the immune system post transplant.
Graft-versus-host disease following high-dose therapy with an autologous stem cell transplant is a bit more controversial. There are data and several publications, in fact , that suggest that autologous graft-versus-host disease does occur in approximate 5-20% of individuals --though these seem like large numbers to me.
These events typically are specific for skin reactions, such as rash, and are very unlikely to manifest as GI or liver issues. Further, this phenomenon may be induced by certain immunosuppressive therapies following transplant.
I can tell you that there are transplanters who remained skeptical regarding autologous stem cell transplants and a graft versus host disease.
To answer the question of engraftment syndrome versus allergic reaction or even infection: One may never truly know if these 2 activities present at the same time, because
To this end, I recommend premedications prior to platelets transfusion, which I am sure you're getting, and labeling Dapsone as an allergy. Of course, the caveat being that I am not directly of participating in the care of your daughter.
As stated above, engraftment syndrome represents a self-limited episode of fevers and rash associated with engraftment of neutrophils and the immune system post transplant.
Graft-versus-host disease following high-dose therapy with an autologous stem cell transplant is a bit more controversial. There are data and several publications, in fact , that suggest that autologous graft-versus-host disease does occur in approximate 5-20% of individuals --though these seem like large numbers to me.
These events typically are specific for skin reactions, such as rash, and are very unlikely to manifest as GI or liver issues. Further, this phenomenon may be induced by certain immunosuppressive therapies following transplant.
I can tell you that there are transplanters who remained skeptical regarding autologous stem cell transplants and a graft versus host disease.
To answer the question of engraftment syndrome versus allergic reaction or even infection: One may never truly know if these 2 activities present at the same time, because
- Engraftment syndrome by definition will abate over time,
- If identified appropriately, the antibiotic or drug causing the allergic reaction will be discontinued and, as such, the reaction will dissipate over time, and
- At the time of engraftment, your physicians may treat you for infection if you're having fevers over concerns of potential neutropenic fever and significant/potential infectious etiologies.
To this end, I recommend premedications prior to platelets transfusion, which I am sure you're getting, and labeling Dapsone as an allergy. Of course, the caveat being that I am not directly of participating in the care of your daughter.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Engraftment syndrome
One additional comment. Speaking to a colleague here at Moffitt regarding the issue of graft-versus-host and autologous stem cell transplant. And she has had some experience with individuals with GI symptoms such as nausea, vomiting, and diarrhea that continue beyond day 30 post transplant. This is counter to what was suggested above. This episode was deemed to be caused by a "graft-versus-host complication" of autologous stem cell transplant and empirically, and importantly successfully, treated was prednisone with a quick taper.
So this likely has some relevance to the situation initially queried in this discussion. I do hope this helps.
If not already done, you may want to discuss endoscopy with and biopsy and testing for CMV to better assess potential involvement of GVHD vs. other cause of GI symptoms.
So this likely has some relevance to the situation initially queried in this discussion. I do hope this helps.
If not already done, you may want to discuss endoscopy with and biopsy and testing for CMV to better assess potential involvement of GVHD vs. other cause of GI symptoms.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Engraftment syndrome
Dr. Shain,
Thank you for your response. I hope you don't mind if I ask a follow on question.
EJ developed 2, possibly 3, distinct rashes 10 days after getting his cells back. The rashes pretty much covered his entire body - one was welts (like a mosquito bite), one looked like scabbed-over flea bites, and he was bright red. His temp went to 105.4, and he was in a-fib. He did have yellowing around the eyes, but this could have been from his Gilbert's Syndrome. The nurses happened to mention that his billirubin was better than it had been throughout his hospital stay. I believe he also received platelets the day before this all started.
The transplant nurse told us all of the above was an allergic reaction to doripenem (Doribax) and epifhime (?) (please forgive my spelling!), and that he should not take drugs in the penicillin family.
You mentioned that both engraftment syndrome and allergies will clear over time. This cleared in four days, but he's had one little rash that has lingered since his SCT.
I know that multiple myeloma patients are subject to infections. I'd rather not have to take one whole family of drugs off the table for him if it was engraftment syndrome and not an allergy. Is there anyway to definitively tell which it was. I asked the doctor if we could test for the drug allergies, and he said no.
Thank you.
Lyn
Thank you for your response. I hope you don't mind if I ask a follow on question.
EJ developed 2, possibly 3, distinct rashes 10 days after getting his cells back. The rashes pretty much covered his entire body - one was welts (like a mosquito bite), one looked like scabbed-over flea bites, and he was bright red. His temp went to 105.4, and he was in a-fib. He did have yellowing around the eyes, but this could have been from his Gilbert's Syndrome. The nurses happened to mention that his billirubin was better than it had been throughout his hospital stay. I believe he also received platelets the day before this all started.
The transplant nurse told us all of the above was an allergic reaction to doripenem (Doribax) and epifhime (?) (please forgive my spelling!), and that he should not take drugs in the penicillin family.
You mentioned that both engraftment syndrome and allergies will clear over time. This cleared in four days, but he's had one little rash that has lingered since his SCT.
I know that multiple myeloma patients are subject to infections. I'd rather not have to take one whole family of drugs off the table for him if it was engraftment syndrome and not an allergy. Is there anyway to definitively tell which it was. I asked the doctor if we could test for the drug allergies, and he said no.
Thank you.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
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