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Nov 01, 2012 - 1:27 am
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. |
Joined: Jul 2010
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)
Joined: Aug 2012
Auto cell transplant
Thank you Sue
Joined: Jun 2010
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
Joined: Aug 2012
Stem cell transplant
Thank you Donna
Joined: Aug 2012
Stem cell transplant
Thank you Donna
Joined: Mar 2010
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
Joined: Nov 2011
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.
Joined: Aug 2012
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
Joined: Mar 2010
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
Joined: Oct 2012
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.
Joined: Aug 2012
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
Joined: Oct 2012
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
Joined: Aug 2012
Ohio State University
The James Cancer Center has a great reputation.
Good luck to you!
Carol