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  1. Replies
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    Hi Marion. Maybe I can give a bit of advice...

    Hi Marion.
    Maybe I can give a bit of advice from someone who's been there. I didn't respond well to my first chemo for PTCL in 2012 and emotionally I was a wreck. In 2013 I spend quite a few months...
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    Thank you Kermica for allowing this post in the...

    Thank you Kermica for allowing this post in the general cancer discussion forum. As 'mycancerwarrier' says there is a lot of snake oil out there and hemp oil or Pheonix Tears have been among the more...
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    I've had my hair fall out several times with...

    I've had my hair fall out several times with different chemos over the last 10 years. Usually starts a bit of regrowth about 1/2 way through treatment or a bit later. My (in my 30's) hair was medium...
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    May 4 was end of radiation and I'm fatigued and...

    May 4 was end of radiation and I'm fatigued and anorexic but gaining energy again and working on the eating issues. Now another 6 to 8 weeks to wait for next CT scan and consult.

    Hoping for rapid...
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    An update on the Nabilone. I've tried varying...

    An update on the Nabilone. I've tried varying doses and times of day and received very little appetite stimulation. What I found awesome is the sleeping aid of Nabilone, I take 1 mg about 9:30 PM,...
  6. Thread: Aitl

    by potatosoup
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    152
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    64,405

    Hoping he'll respond as well as I did on the...

    Hoping he'll respond as well as I did on the Romidepsin and that he has the good health for the allo.
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    PTCL-NOS and April Fools

    Aprils fools update. Saw the Radiologist March 30, consulted, booked, tattooed all in one afternoon with a start date of April 13 for rads. Off to a dinner theatre March 31, excellent meal, good show...
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    Thanks Shaww. I read about 1/2 the book before...

    Thanks Shaww. I read about 1/2 the book before getting too much chemo brain and not being able to read much back in 2012. I returned it to the library and forgot until I saw your post. I'll check to...
  9. Thread: New scans

    by potatosoup
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    3,444

    Great news!

    Great news!
  10. Replies
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    Nabilone/Cesamet

    Has anyone had experience with this drug? I've had low appetite issues for quite some time while on Romidepsin and after talking with my oncologist and GP, was prescribed this as an appetite...
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    CT results in - Rads to start soon, Romidepsin done for now

    After more than a week of waiting for CT results my oncologist called me this evening. The 'mass' in my pelvis appears to be inside the small bowel and not safe for a guided needle biopsy,...
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    I went through a couple days of fever about 2...

    I went through a couple days of fever about 2 weeks ago with no sweats, then a day or 2 after the fever broke I had some minor night sweats like you are describing. Just the bodies way of fighting...
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    I was delayed on my ABVD cycle 1, day 15 due to...

    I was delayed on my ABVD cycle 1, day 15 due to low blood counts, right off the hop. I was put on neupogen shots to keep my counts up and didn't miss anything further.
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    Debpower I've finished 11 cycles of Romidepsin...

    Debpower
    I've finished 11 cycles of Romidepsin and was only delayed once for a week in January due to a bad cold where I just stayed home. The only blood count that dropped on my was platelets, it...
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    CT results - inconclusive?

    I've been wondering whether to write and what. The fever from a week ago has resolved and what I was expecting on the CT wasn't there. My December CT had shown scar tissue only on my lungs where the...
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    My dietician recommended high protein, high...

    My dietician recommended high protein, high calorie during and after any treatments. This is mainly due to the body needing lots of protein to repair itself and lots of calories to keep up energy...
  17. When I finished my ABVD for HL, I did get to a...

    When I finished my ABVD for HL, I did get to a gym a couple times a week for a light program for several months until I was working fulltime again. When I lost my motivation, I got a dog from the...
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    I've been through several different chemo...

    I've been through several different chemo regimens and can give a bit of advice on diet. If you don't eat, you lose weight. If you can't eat what's in front of you, you don't eat. I've had the...
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    My health just can't stay stable. A bad cold...

    My health just can't stay stable.

    A bad cold late January into February delayed my last cycle 10 infusion by a week. On to cycle 11 and getting some symptoms again late February. Saturday evening...
  20. Mrs Superman I'd just like to add a few words of...

    Mrs Superman
    I'd just like to add a few words of support to the already great advice you've received. I was a single dad of a 13 and 16 yr old when I was diagnosed with HL. As for the information to...
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    As PO noted, Epstein Barr is associated with...

    As PO noted, Epstein Barr is associated with several different B-cell lymphomas. I did test positive for the E-B virus several months before my HL diagnosis and the prognosis for HL is very favorable...
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    From an ABVD survivor, the choice of oncologist...

    From an ABVD survivor, the choice of oncologist after diagnosis is a rather moot point. As PO said above, treatment is a well established formula and you referred to a "Gold Standard" although you...
  23. Thread: Aitl

    by potatosoup
    Replies
    152
    Views
    64,405

    Keep us posted on your brothers reactions and...

    Keep us posted on your brothers reactions and responses to the Romidepsin. There aren't many of us on it yet who are posting
  24. Thread: New in TN

    by potatosoup
    Replies
    735
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    296,384

    Bank, I've been there too. When I first got to...

    Bank, I've been there too. When I first got to leave the hospital after my stem cell transplant, I was to stay in the same city within 1/2 hours drive of the cancer center. On the way to my sisters...
  25. Sue I'll chime in on the vacation part. A year...

    Sue
    I'll chime in on the vacation part. A year ago when I knew I had limited time, I planned a trip with my wife (same situation as yours but not as many years) to go as far as Florida. Flew from...
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