Auto cell transplant
Carol
Comments
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I understand...
Hi Carol,
All we can do is what we feel is best for ourselves. I too have asked myself if I am faced with ever having to do a transplant, do I really want to do it? I've done alot of research and feel similar as you when it comes to quality of life as to quantity. I talked to my Onc about it and he said we would cross that bridge when we came to it, but felt there would be a few options before considering that route. I'll keep you in my prayers, and wait to hear how your appointment goes on the 6th. Best wishes...Sue
(FNHL-2-3A-6/10)0 -
stupid question Maybe??
Dear Carol,
I do understand the agony you are going through. I am happy your Pet scan showed no activity in your vital organs. Is it possible to take a biopsy from your right hip??
The doctor said "hot spots". What does that mean?? Did he say cancer?? Is it possible it's just arthritis??? I think a regular xray is in order. I believe, I think an xray would show arthritis, if it is arthritis. Not sure if this is a stupid question. But, this is what comes to my mind.
Yes, please keep us posted. Maggie0 -
I appreciate your thoughts.
I too am possibly facing an auto stem cell transplant, and I too am thinking that I prefer quality over quantity. But the decision is a tough one. I am putting it to prayer for now.
I was glad to hear of someone else who wonders if it's worth it.0 -
Ohio State University
HI
I am new at this I have been reading this site for a while now and posted the other day (CLL and follicular and clueless) but nobody responded. That’s ok but when I see you mentioned OSU I had to reply I live in Ashland Ohio and I have Lymphoma and cl leukemia. I did not know about OSU. I keep thinking if I go out of remission I would get second opinion and on the leukemia site I seen just today Dr. John Byrd at Ohio State University James Cancer Hospital is one of the top CLL researchers anywhere. Just needed to Thank you being as this is a lot closer than PA cancer treatment center of America. I hope all is well with you!
I feel better knowing I learned something new that makes dealing with this easier0 -
Not stupid at all!miss maggie said:stupid question Maybe??
Dear Carol,
I do understand the agony you are going through. I am happy your Pet scan showed no activity in your vital organs. Is it possible to take a biopsy from your right hip??
The doctor said "hot spots". What does that mean?? Did he say cancer?? Is it possible it's just arthritis??? I think a regular xray is in order. I believe, I think an xray would show arthritis, if it is arthritis. Not sure if this is a stupid question. But, this is what comes to my mind.
Yes, please keep us posted. Maggie
Your question is also my question. PETs show only hyper-metabolic activity - some of which might be cancerous. Has there been a CT done to confirm a mass in the hip? PETs also show lymph nodes that are reactive - even if only to infection. An inflammatory condition such as arthritis can certainly also show a hot spot. Not knowing anything else, I would definitely seek a second opinion, as something is missing in this puzzle, like a biopsy, for example. An SCT has a known and measurable rate of mortality, and it is clearly best to avoid this risk if you can. I think there is also an unfortunate a tendency by some doctors to default to SCTs, which may be like nuking a brush fire. Second opinion time.0 -
Auto cell transplantallmost60 said:I understand...
Hi Carol,
All we can do is what we feel is best for ourselves. I too have asked myself if I am faced with ever having to do a transplant, do I really want to do it? I've done alot of research and feel similar as you when it comes to quality of life as to quantity. I talked to my Onc about it and he said we would cross that bridge when we came to it, but felt there would be a few options before considering that route. I'll keep you in my prayers, and wait to hear how your appointment goes on the 6th. Best wishes...Sue
(FNHL-2-3A-6/10)
Thank you Sue0 -
Stem cell transplantonlytoday said:Stem Cell Transplant
Carol,
I agree with Sue, we have to watch out for ourselves. I have my follow up appt on the 6th. So we need to compare notes after our respective appointments! Good luck to you! Will pray for you.
Hugs,
Donna
Thank you Donna0 -
Stem cell transplantonlytoday said:Stem Cell Transplant
Carol,
I agree with Sue, we have to watch out for ourselves. I have my follow up appt on the 6th. So we need to compare notes after our respective appointments! Good luck to you! Will pray for you.
Hugs,
Donna
Thank you Donna0 -
Stupid question Maybe??miss maggie said:stupid question Maybe??
Dear Carol,
I do understand the agony you are going through. I am happy your Pet scan showed no activity in your vital organs. Is it possible to take a biopsy from your right hip??
The doctor said "hot spots". What does that mean?? Did he say cancer?? Is it possible it's just arthritis??? I think a regular xray is in order. I believe, I think an xray would show arthritis, if it is arthritis. Not sure if this is a stupid question. But, this is what comes to my mind.
Yes, please keep us posted. Maggie
Hi Miss Maggie,
I've have had 2 PET scans and 2 bone marrow biopsies. I think he ruled out arthritis in the first PET scan. They call it atypical lymphoid inflitrate with marked crush artifact w/involvement b cell lymphoma.
When I meet with the specialists on Tuesday I have a list of questions for them.
Will update after my visit
Carol0 -
I appreciate your thoughtsfullyloved said:I appreciate your thoughts.
I too am possibly facing an auto stem cell transplant, and I too am thinking that I prefer quality over quantity. But the decision is a tough one. I am putting it to prayer for now.
I was glad to hear of someone else who wonders if it's worth it.
Yes, when you have gone through intense chemo you just want it over. As I stated earlier I am 65 and unless they can give me a positive outcome I'll look at any other alternatives they may offer.
Good luck and best wishes to you.
Carol0 -
Ohio State Universitymisujlh said:Ohio State University
HI
I am new at this I have been reading this site for a while now and posted the other day (CLL and follicular and clueless) but nobody responded. That’s ok but when I see you mentioned OSU I had to reply I live in Ashland Ohio and I have Lymphoma and cl leukemia. I did not know about OSU. I keep thinking if I go out of remission I would get second opinion and on the leukemia site I seen just today Dr. John Byrd at Ohio State University James Cancer Hospital is one of the top CLL researchers anywhere. Just needed to Thank you being as this is a lot closer than PA cancer treatment center of America. I hope all is well with you!
I feel better knowing I learned something new that makes dealing with this easier
The James Cancer Center has a great reputation.
Good luck to you!
Carol0 -
I'm not a doctorcarolp99 said:Stupid question Maybe??
Hi Miss Maggie,
I've have had 2 PET scans and 2 bone marrow biopsies. I think he ruled out arthritis in the first PET scan. They call it atypical lymphoid inflitrate with marked crush artifact w/involvement b cell lymphoma.
When I meet with the specialists on Tuesday I have a list of questions for them.
Will update after my visit
Carol
Dear Carol,
I see you are seeing the specialists on Tuesday. I am not a doctor, please understand that.
I would still ask about getting a xray to check for arthritis. I didn't know Pet Scans were used to dx arthritis. You have nothing to lose by asking.
Please let us know what the doctor's say. The best on Tuesday. Love Maggie0
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