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  1. So, CT scans every 3 months used to be the norm...

    So, CT scans every 3 months used to be the norm after remission was achieved. However, the majority of relapses are caught by a return of symptoms, such as swollen lymph nodes, fevers, etc. Case in...
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    I'm fascinated by this

    Thanks for calling my attention to this article. I have long wondered if there are various sub-types of DLBC yet to be discovered that might explain the smaller subset of DLBC's that relapse again...
  3. Deb, Glad it didn't bore you at least! It's been...

    Deb, Glad it didn't bore you at least! It's been a journey, but it's also been an adventure, at least for parts of it. The worst allo SCT weeks were definitely NOT an adventure. They felt like a...
  4. My 6-year DLBC Story Continued

    Relapse, Auto SCT, and a Short Remission
    A scan in April 2014 revealed progression (an increase in the size of the mass). So, that summer, I did 2 cycles R-ICE followed by stem cell collection, BEAM...
  5. My 6-year DLBC story

    Maybe be careful what you ask for? :smile: I don't mind telling my story, but it's pretty long. I wasn't sure how to shorten what I had written, so I'm posting it in two parts on this thread. You...
  6. David, not all DLBC's express CD30. My most...

    David, not all DLBC's express CD30. My most recent biopsy said it showed a weak expression of CD30. So, we decided to try Brentuximab. Even if it didn't have great results, even as little as a 10%...
  7. Yes, primary lung lymphoma is rare, as in only...

    Yes, primary lung lymphoma is rare, as in only 0.4% of all lymphomas, and 3.6% of all non-Hodgkin's cases. As 80% of lung lymphomas are in 40-year-olds or older, a 24-year-old patient is extremely...
  8. Hi, Deb. I didn't want you to think that no one...

    Hi, Deb. I didn't want you to think that no one heard your request for DLBC stories. I don't have time today to post my story, as it's quite long. I need to type it elsewhere and figure out how to...
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    I thought I'd update this. With all your input, I...

    I thought I'd update this. With all your input, I decided to call my doc and tell them about my eating and nausea issues. They gave me permission to raise my Prednisone dosage back to 5 mgs. I've...
  10. A bit of a rant on the misconceptions regarding lymphoma

    I've been catching up on the show NCIS on Netflix. In Season 12 Episode 2, Director Vance has an x-ray followed by a CT scan because there are spots on his lungs. Supposedly, the doctor tells him...
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    Thanks for merging them. Huh. Didn't think...

    Thanks for merging them.

    Huh. Didn't think about it being kind of like anorexia. I also didn't realize anorexia can be a side effect of various drugs or a symptom of various diseases. The kind we...
  12. I understand your fear. I'm sorry you are faced...

    I understand your fear. I'm sorry you are faced with this. I agree with everything Lisa said. There is so much it could be aside from cancer. Wait till you have a proper diagnosis before assuming the...
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    Digestion/nausea/appetite issues 1 year after transplant

    Hello to all those fighting the good fight! I have something to run past you.

    Lately, my appetite has been in the pits. I get hungry, but I start eating and suddenly everything looks gross and I...
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    So, update on my itchiness and skin issues. My...

    So, update on my itchiness and skin issues. My doctor is out of the country until end of March, so I saw his covering doctor today. They looked at my skin and said that I seem to have mild skin GVHD,...
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    Thanks, Alison. Yes, Brentuximab is working well...

    Thanks, Alison. Yes, Brentuximab is working well for me. 🤞We didn't know if it would or not. The last biopsy showed a weak expression of CD30, so we were hoping that at least it would keep the...
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    That's fine. I understand why you are asking. I...

    That's fine. I understand why you are asking. I was scanned about six weeks ago on Jan. 25. CT scan showed that the mass in my center chest is shrinking nicely: 50% reduction since Sept. 27, 2017. If...
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    Funny, that. I had/have nearly all the other...

    Funny, that. I had/have nearly all the other (somewhat rarer) symptoms of prednisone withdrawal except mood swings, depression, or irritability! Achiness, joint pain, fever, loss of appetite,...
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    Skin GVHD or prednisone withdrawal symptom?

    The past two days I have been incredibly itchy! All over by times, but it's worst on my back. Nearly drives me nuts! I'm currently tapering Prednisone. I'm down to 2.5 mgs. Some reading I did said...
  19. Great! Don't have to be young. :smile: I'll be...

    Great! Don't have to be young. :smile: I'll be the 30-ish woman with brown hair heavily streaked with gray and sporting an oxygen tank or concentrator as my fashion accessory. :smile:
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    Hi, Chef. Nice to meet you! I was (and am) being...

    Hi, Chef. Nice to meet you! I was (and am) being treated at PennState Hershey Medical Center in Pennsylvania. They are a university hospital with a very competent hematology/oncology department....
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    I'm enjoying the discussion. Thanks for chiming...

    I'm enjoying the discussion. Thanks for chiming in. We are definitely all agreed that frenzied googling before diagnosis isn't helpful. My main concern is patients who take the advice of not googling...
  22. Anyone going to the Survivorship Symposium in Denver?

    I stumbled across this a few months back: https://www.bmtinfonet.org/9th-national-celebrating-second-chance-life-survivorship-symposium-2018. They hold a transplant survivor symposium every year....
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    Regarding Dr. Google

    I am a bit disturbed about the advice on this forum to not go to the internet for information. Why am I disturbed? Because I have seen cancer patients who don't really care about what cancer they...
  24. Hi, po. I've been reading this thread as I have...

    Hi, po. I've been reading this thread as I have time. Interesting. Your cancer and transplant knowledge amuses me. I do a lot of research too in regards to cancer, treatment, and transplants, as I...
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    Only place for opioids being terminal cancer...

    Only place for opioids being terminal cancer patients and surgery? Yeah, well, they are wrong. I would never have survived my allo transplant without dilaudid, oxycodone, and codeine. When the pain...
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