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transfusion antibodies
My husband receives transfusions, usually 2 units of packed red cells, evey 7 to 10 days. He has developed antibodies and has had 7 additional transfusions. Will there be a time when a match won't be found? Will the transfusions have to stop?
We saw his oncologist yesterday because my husband needed another transfusion after having one only four days ago. He will be hospitalized today to see if he is bleeding internally (I don't think so). Stem cell transplants are not performed on people his age (79), so the end is probably very near.
I have a lot of sympathy for you with respect to your gastro problems. I had severe, long-stanging diverticular disease with quite a few perforations. Most of my large colon was finally removed about 10 years ago (I'm 66) but I still have diverticula all over the remaining parts and have diarrhea whenever I eat anything! So sorry to hear about your breast CA. I hope it's in remission. It sounds like you've had a rough patch there.
Darlingtondoll
I have a lot of sympathy for you with respect to your gastro problems. I had severe, long-stanging diverticular disease with quite a few perforations. Most of my large colon was finally removed about 10 years ago (I'm 66) but I still have diverticula all over the remaining parts and have diarrhea whenever I eat anything! So sorry to hear about your breast CA. I hope it's in remission. It sounds like you've had a rough patch there.
Darlingtondoll
Hi there - I am so very sorry to learn that your husband has MDS. I had not heard of it before, but have done a little research on it tonight on the net, where there is a wealth of information and it looks as if there are some new treatments coming along, like stem cell transplants.
Quite coincidentally, I attended a Crohn's/Colitis Assocn meeting last week where stem cell transplants were discussed by my gastro. Apparently some leukaemia patients who had stem cell transplants (autologous, from their own cells) were cured of Crohn's quite by accident!. I was flabbergasted, as the some 15 gastros I have seen in the past 37 yrs have always told me Crohn's is incurable. It can be life threatening, just as cancer is (I have breast cancer also) if a stricture perforates the intestine into the abdomen and as I have just been diagnosed with a stricture of the small intestine, I am obviously concerned about this possibility, but almost delirious that new treatments are now being considered for approval in England, like leukapharesis, biologic medicines and stem cell transplants.
I guess what I am trying to say is that I obviously cannot answer your questions as to the antibody problem and a possible time when a match may not be found.
I would think the only person who could answer your queries with any authority and experience is a haemotologist, and I would imagine your husband is already under the care of such a specialist.
When I had a problem with my Oncologist, who said I had to stop taking my chemo (methotrexate) fror Crohns, in order to have FEC chemo for breast cancer, I e-mailed the Mayo Clinic in Rochester, , Cleveland Clinic in Cincinnati, MD Anderson in Houston, and a specialist IBD hospital in England, as my gastro had never treated a patient with the two concurrent diseases, and was unable to tell me what he would do if I had a Crohn's flare if I stopped the mtx. They all replied quickly , but sadly, none of them had ever treated a patient like me, and said it was a difficult case.. At least they responded- and suggested prednisone steroids, but as I had a steroid induced psychotic reaction when dx with bc, my gastro said this was out of the question. Without exception, they all said I must have the FEC chemo, which is why I went ahead with it, despite knowing I would have problems with my Crohn's.
Somehow, there is sometimes a silver lining and I found a young female Oncologist who suggested I use a small daily dose of dexamethasone (a steroid, but different in pharmacological composition to prednisone) for the 4 months of FEC. It was a very tough time as I couldn't eat any solid food without severe faecal incontinence, but she got me some hospital prescribed Frutijuice that had all the essential nutrients and minerals to keep me alive for the months when on FEC. I am back on methotrexate now and doing fine, although it has high toxicity to the liver. My gastro asked me last week if I wanted quality or quantity of life - I know the risks of serious side effects and choose quality, as I am almost 63 yrs. I am rather surprised I am still here!
I am sorry I have prattled on about my own problems, just wanted to share with you, that sometimes, we can find the solution to our empirical problems. I would try and do some research on the internet - there is a wealth of information there - and see if you can find a haemotologist who can help with your questions. The doctors who responded to me from the USA did not charge me for their advice.
I don't know where you live (I assume in the US), but a great friend of mine, now 79 yrs old, is being treated at the Moffitt Cancer Hospital in Tampa, Florida for stage IV lung cancer. He has had a lung and a kidney removed, and is still here 7 years later, in good health, when the doctors at his previous hospital near Tampa gave up on him and told his wife to get his affairs in order and find a funeral home. She would not give up - did a lot of research herself on the internet, found the Moffitt hospital and although his treatment cost over $1m ,fortunately they had good insurance cover. He even came to England for a month last year to visit with us and was fit enough to enjoy it.
I sincerely hope you find some answers to your queries - wish I knew of an internet site for MDS where a haematologist would answer queries, as the gastro does from the Cleveland Clinic.
I wish you and your husband well, and hope you find the solution to your problem.
Take care,
Liz.
Quite coincidentally, I attended a Crohn's/Colitis Assocn meeting last week where stem cell transplants were discussed by my gastro. Apparently some leukaemia patients who had stem cell transplants (autologous, from their own cells) were cured of Crohn's quite by accident!. I was flabbergasted, as the some 15 gastros I have seen in the past 37 yrs have always told me Crohn's is incurable. It can be life threatening, just as cancer is (I have breast cancer also) if a stricture perforates the intestine into the abdomen and as I have just been diagnosed with a stricture of the small intestine, I am obviously concerned about this possibility, but almost delirious that new treatments are now being considered for approval in England, like leukapharesis, biologic medicines and stem cell transplants.
I guess what I am trying to say is that I obviously cannot answer your questions as to the antibody problem and a possible time when a match may not be found.
I would think the only person who could answer your queries with any authority and experience is a haemotologist, and I would imagine your husband is already under the care of such a specialist.
When I had a problem with my Oncologist, who said I had to stop taking my chemo (methotrexate) fror Crohns, in order to have FEC chemo for breast cancer, I e-mailed the Mayo Clinic in Rochester, , Cleveland Clinic in Cincinnati, MD Anderson in Houston, and a specialist IBD hospital in England, as my gastro had never treated a patient with the two concurrent diseases, and was unable to tell me what he would do if I had a Crohn's flare if I stopped the mtx. They all replied quickly , but sadly, none of them had ever treated a patient like me, and said it was a difficult case.. At least they responded- and suggested prednisone steroids, but as I had a steroid induced psychotic reaction when dx with bc, my gastro said this was out of the question. Without exception, they all said I must have the FEC chemo, which is why I went ahead with it, despite knowing I would have problems with my Crohn's.
Somehow, there is sometimes a silver lining and I found a young female Oncologist who suggested I use a small daily dose of dexamethasone (a steroid, but different in pharmacological composition to prednisone) for the 4 months of FEC. It was a very tough time as I couldn't eat any solid food without severe faecal incontinence, but she got me some hospital prescribed Frutijuice that had all the essential nutrients and minerals to keep me alive for the months when on FEC. I am back on methotrexate now and doing fine, although it has high toxicity to the liver. My gastro asked me last week if I wanted quality or quantity of life - I know the risks of serious side effects and choose quality, as I am almost 63 yrs. I am rather surprised I am still here!
I am sorry I have prattled on about my own problems, just wanted to share with you, that sometimes, we can find the solution to our empirical problems. I would try and do some research on the internet - there is a wealth of information there - and see if you can find a haemotologist who can help with your questions. The doctors who responded to me from the USA did not charge me for their advice.
I don't know where you live (I assume in the US), but a great friend of mine, now 79 yrs old, is being treated at the Moffitt Cancer Hospital in Tampa, Florida for stage IV lung cancer. He has had a lung and a kidney removed, and is still here 7 years later, in good health, when the doctors at his previous hospital near Tampa gave up on him and told his wife to get his affairs in order and find a funeral home. She would not give up - did a lot of research herself on the internet, found the Moffitt hospital and although his treatment cost over $1m ,fortunately they had good insurance cover. He even came to England for a month last year to visit with us and was fit enough to enjoy it.
I sincerely hope you find some answers to your queries - wish I knew of an internet site for MDS where a haematologist would answer queries, as the gastro does from the Cleveland Clinic.
I wish you and your husband well, and hope you find the solution to your problem.
Take care,
Liz.
My husband is in the final stages of MDS - Myelodysplastic Syndrome, a type of bone marrow cancer. His red blood cells, white blood cells and platelets are in the very low range which is why he requires transfusions so frequently.
I call myself "Darlingtondoll" because I live on a street called Darlington Drive. All of the streets in our neighborhood are named after places in England.
I call myself "Darlingtondoll" because I live on a street called Darlington Drive. All of the streets in our neighborhood are named after places in England.
Hi there - I am originally from Darlington, Co. Durham, but now live in Cornwall, so thought I would say hi.
You don't say why your husband is receiving transfusions - could you elaborate and then perhaps we can help you further?
I have had Crohn's disease for some 37 yrs, and occasionally need red cell transfusions due to severe rectal bleeding. I haven't had any problems so far - guess I am just lucky.
Liz.
You don't say why your husband is receiving transfusions - could you elaborate and then perhaps we can help you further?
I have had Crohn's disease for some 37 yrs, and occasionally need red cell transfusions due to severe rectal bleeding. I haven't had any problems so far - guess I am just lucky.
Liz.
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