Auto cell transplant

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carolp99
carolp99 Member Posts: 70
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Saw my oncologist yesterday and while my PET scan showed no cancer in my vital organs, found hot spots on my right hip. I have been having pain but thought it was from the two biospies I had earlier. He wants me to meet with drs. at the James Center at OSU about an auto cell transplant. As I stated earlier I have researched this throughly on the web,and I don't believe this is the route for me. I've read that it takes about a year to fully recover and the there is no guarantee that the cancer will not return. At my age, 65, I think tha I prefer quality of life. I'm hoping that there may be other options for me. I have such a great support group with family and friends I still am able to maintain a positive outlook. I have my appt. on Nov. 6th and will keep everyone posted.
Carol

Comments

  • allmost60
    allmost60 CSN Member Posts: 3,178 Member
    #2
    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)
  • onlytoday
    onlytoday CSN Member Posts: 609 Member
    #3
    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
  • miss maggie
    miss maggie CSN Member Posts: 929
    #4
    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
  • fullyloved
    fullyloved Member Posts: 39
    #5
    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.
  • misujlh
    misujlh CSN Member Posts: 5
    #6
    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
  • po18guy
    po18guy CSN Member Posts: 1,539 Member
    #7
    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

    Not stupid at all!
    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.
  • carolp99
    carolp99 Member Posts: 70
    #8
    allmost60 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)

    Auto cell transplant
    Thank you Sue
  • carolp99
    carolp99 Member Posts: 70
    #9
    onlytoday 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

    Stem cell transplant
    Thank you Donna
  • carolp99
    carolp99 Member Posts: 70
    #10
    onlytoday 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

    Stem cell transplant
    Thank you Donna
  • carolp99
    carolp99 Member Posts: 70
    #11
    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

    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
  • carolp99
    carolp99 Member Posts: 70
    #12
    fullyloved 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.

    I appreciate your thoughts
    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.
    Carol
  • carolp99
    carolp99 Member Posts: 70
    #13
    misujlh 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

    Ohio State University
    The James Cancer Center has a great reputation.
    Good luck to you!
    Carol
  • miss maggie
    miss maggie CSN Member Posts: 929
    #14
    carolp99 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

    I'm not a doctor
    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 Maggie

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