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  • Forum Post: Re: not responding well to abvd

    Posted by
    Posted 3 months ago
    ABVD did give me the usual ill-effects (weakness, fatigue, loss of taste / appetite, sore mouth, hair loss, wrinkling and darkening of skin and nails etc) but the 'B' (Bleomycin) so badly scarred my lungs after the 4th dose that breathing became painful and laboured even after a short walk. My...

  • Forum Post: Re: Chances of relapse?

    Posted by
    Posted 6 months ago
    Just got the blood results - testosterone down to 5.9 (8~32 is a normal range, symptoms likely below 15) - and so so that seems to be the cause of my symptoms, phew! (Still got a CT scan booked just in-case). For the record I can confirm you don't feel yourself with low testosterone (nor do you feel...

  • Forum Post: Update on Second late relapse of early stage HL

    Posted by
    Posted 10 months ago
    So, a month later all the exams are complete; portacath was inserted 72hrs ago (that was an odd feeling under local!) - some extra details on the histology are coming from Lyon tomorrow which should show if the abnormal cells show enough CD20 or CD30 to add rituximab or brentuximab to eshap. This time...

  • Forum Post: RELAPSE - ANYONE HAD ESHAP?

    Posted by
    Posted 11 months ago
    Hi I discovered last week that my Hodgkin's Lymphoma has relapsed - I was originally diagnosed in June 2010 with stage 4B and have 8 months of ABVD then went into remission. This time it's stage 2B (thankfully) and the first step in my journey is ESHAP chemotherapy which is due to start on...

  • Forum Post: Totally paranoid....

    Posted by
    Posted over 1 year ago
    First of all, let me apologise as this will seem ungrateful and insensitive to anyone not yet in remission. I am and I'm truly grateful to be BUT I am constantly on the lookout for the cancer to return. I suppose this is normal but it's quite hard to talk about as it seems uncharacteristically...

  • Forum Post: Some Good News!

    Posted by
    Posted over 2 years ago
    So after 9 years, numerous treatment including various chemos, radiotherapy, a trial and an Allogeneic Stem Cell Transplant, plus all the various side effects you get from all the above treatments, plus being a relapse patient, I got the news today that I am in Full Remission :) It's been hard, having...

  • Forum Post: R3 protocol for ALL

    Posted by
    Posted over 2 years ago
    Hi, My son is 7, with ALL and relapsed in February. I am wondering if there is anyone out there who's child is following the R3 Protocol and is just doing the chemo and not having a BMT. Thanks, Bridget

  • Forum Post: Re: GVHD

    Posted by
    Posted over 2 years ago
    Hello,mothersue,I also have a twelveyearold son who had his BMT February 2010 .He was lucky enough to have an HLA- identical brother,but unlucky enough to experience acute gastrointestinal GVHD grade 4.We nearly lost him...I still don΄t want to remember those days.It was the worst of times...After trying...

  • Forum Post: Re: Stem cell rescue done

    Posted by
    Posted over 2 years ago
    Hi Stacey The bone marrow aspiration was done right in the beginning (Jan 2010) along with the biopsy of a malignant node tissue that was extracted from the abdomen. Tests showed bone marrow was free from disease (they use the term 'uninvolved') but the sample lymph node tissue showed HL....

  • Forum Post: Re: NOT ANOTHER RELAPSE?

    Posted by
    Posted over 2 years ago
    Hi Martin I am shocked, but I hope it is only one of nature's pranks! I am hot on your tail. I was given a 6-week break after the last scan (23 Nov - all clear), then on the 4th and 5th of Dec, two sessions of stem cell harvesting yielded a total of 70% of the required amount. I am now resting...

  • Forum Post: NOT ANOTHER RELAPSE?

    Posted by
    Posted over 2 years ago
    Hi, Feeling a bit distraught today. Diagnosed with lymphoma August 2009, started 6 months ABVD, got the all-clear February 2010, relapsed April 2010. Started high dosage chemo June 2010 followed by a stem-cell transplant. Got the all-clear AGAIN just before Christmas but have found another lump on...

  • Forum Post: Re: Relapse in Hodgkin's Lymphoma

    Posted by
    Posted over 3 years ago
    Hi Your story is quite similar to mine. Diagnosed in Jan. Interim PET-CT scan in Apr after 6 doses of ABVD showed near complete response. Sometime after the 7th dose, Bleomycin-induced lung damage was detected and this drug was omitted for the final 5 sessions. Final PET-CT scan after 12 doses showed...

  • Forum Post: Re: doesnt feel like anyone is listening.

    Posted by
    Posted over 3 years ago
    Hi emziee01 We have quite a lot in common..after a very promising response to ABVD, after 6 cycle (12 doses) the disease relapsed in the form of 3 new malignant nodes in the chest. At no time was there any node that could be seen/felt externally, at its peak there were 35+ malignant nodes/nodules...

  • Blog Post: Newbie

    Posted by
    Posted over 4 years ago
    Apologies for the length & waffliness of this post. This is my first time on this site, so I thought I'd give a whistlestop tour of me having cancer for the past year. I was diagnosed with Hodgkin's Lymphoma last June (2008) & underwent a 6 month course of ABVD chemo. At the time, I...
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