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  • Forum Post: Re: not responding well to abvd

    Posted by
    Posted 2 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: Diagnosed with HL on 11/1/13

    Posted by
    Posted 4 months ago
    Hi all. I have decided to join the forum after reading the very helpful posts. I have been diagnosed with HL on 11/1/13. I am awaiting confirmation of dates for scans and start of chemo. I do not yet know the stage of it. I am 25 years old and work as a firefighter. I have never touched a cigarette...

  • Forum Post: Re: Tests ongoing

    Posted by
    Posted 8 months ago
    Hi Neil, I am a hodgkin's survivor. 26 years old. I have been in remission since the summer of 2010, so approx 2 years. Things have been going well. Everything has returned to normal with my life except for constantly being in fear of recurrence which I am working on trying to overcome. I went...

  • Forum Post: Re: Tests ongoing

    Posted by
    Posted 8 months ago
    I work in contract security on a shift basis. I work 4 days have 4 days off then do 4 nights and have 4 off. If they can sort out the treatment to start on my 1st off day then I am hopeful it will not affect my work. Next week I should know more and I will be settled in my mind a bit more I...

  • Forum Post: Hypothyroidism after ABVD?

    Posted by
    Posted 8 months ago
    Hello there I finished my chemo about 18 months ago and have been borderline hypothyroid for a while, i was just wondering if this is a typical path... i know radiation therapy is thought to affect the thyroid but just chemo? I did 6 months of ABVD and haven't felt absolutely tip top at ant...

  • Forum Post: Mumps/Tonsilitis & HL

    Posted by
    Posted 10 months ago
    Just out of interest, did any of you who have had HL suffer much with mumps or tonsillitis or even glandular fever during childhood/teenage years? I know there's a link between Epstein-Barr virus and lymphoma and that that causes glandular fever but I've also discovered that EBV can also cause...

  • Forum Post: Re: Preparing for stem cell transplant after ICE

    Posted by
    Posted 11 months ago
    Hi Liz Sorry for late reply, I was travelling. Yes, I underwent autologous blood stem cell rescue after 3 different chemo regimens between Jan 2010 and Feb 2011. Due to my age (55+) and poor stem cell output, the doc did warn me that I was at best a 'marginal' candidate. I was symptom free...

  • Forum Post: Totally paranoid....

    Posted by
    Posted 11 months 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: Port vs PICC

    Posted by
    Posted 11 months ago
    Hi I had my second chemo session last week and have been in a lot of pain with the arm used and the breast on that side also hurts :( I've been told by nurses I have tiny veins, I've already have one in the other arm leak when I had an antibiotic IV - the vein is still sore and hard where...

  • Forum Post: Relapse of Hodegkins Lymphoma

    Posted by
    Posted over 1 year ago
    I am Lottie and I am 19 years old. I am studying Classical Literature, English and Latin at the University of Leeds. I have just been diagnosed with Hodgekins Lymphoma for the second time. The first time I was 15 and I was living in the Middle East, so even though I am quite used to the routine of...

  • Forum Post: Re: HL Chemo Query - Your help needed!

    Posted by
    Posted over 1 year ago
    Thanks for all the feedback. It definitely helped! We saw the consultant yesterday and he is concerned about the pain. My husband is due his end of treatment PET CT scan in a few weeks so this will be investigated. I mentioned the possibility of infection e.g. bone marrow infection, and the consultant...

  • Forum Post: HL Chemo Query - Your help needed!

    Posted by
    Posted over 1 year ago
    My husband finished his ABVD chemotherapy mid December and is still getting lots of pain especially in his bones. Is this normal? He has NSHL stage 4a.

  • Forum Post: picc line going in tomorrow

    Posted by
    Posted over 2 years ago
    Hi having this done tomorrow do any of you have good results from picc line as terrified and got in a right state over it already fealing sick with worry, I have had 3 chemo sessions and got very anxious as iv bin soo sick and still have 9 to go!!!!!

  • Blog Post: Our Journey: The story so far..part 4

    Posted by
    Posted over 2 years ago
    I've given a lot of detail in this blog and some of it may seem negative. This has never been my aim. I want to share our journey in the hopes that this can help others who have to face such challenges. So why add the negative detail over the PET CT scan? Was it to highlight inadequacies within the...

  • Blog Post: Our Journey: The story so far..part 3

    Posted by
    Posted over 2 years ago
    Now my poor darling has to be brave and start this battle to defeat the tumours in his body! I know he will win! His strong will and determination will not allow failure! The word doesn't exist in his dictionary! Go darling go!! He had his first chemo that afternoon. It was a very emotional day,...

  • Blog Post: Our Journey: The story so far..part 2

    Posted by
    Posted over 2 years ago
    We left the hospital grounds and went for coffee at a nearby store. We talked things through (as we always do) and I said that I'd support him on whatever decision he made; whether he chose to challenge this or just accept this is how it was and to therefore go back and start his treatment. There...

  • Blog Post: Our journey: The story so far

    Posted by
    Posted over 2 years ago
    I've neglected the blog updates as there has been a lot going on so I'll try to make up for it with this update. Where to begin...when I last posted my husband had just had his PET CT scan and was due to start treatment. Things didn't go to plan!  We arrived at the hospital all geared up...

  • Blog Post: Our Journey: Treatment Time

    Posted by
    Posted over 2 years ago
    After an emotionally intense few weeks of being advised that cancer was suspected, to having cancer confirmed, to then have to wait for a specific diagnosis; we are finally here! It's Hodgkin's Lymphoma - stage 3b. My darling husband who has been amazing throughout all the prodding and poking...

  • Blog Post: Our Journey: Intro

    Posted by
    Posted over 2 years ago
    I have created this blog to track our journey. My husband has just been diagnosed with Hodgkin's Lymphoma. We were advised on Monday that he is stage 3B based on scans taken and we await the results of the bone marrow biopsy. I wanted to track our journey. I wasn't aware of the Macmillan online...

  • Blog Post: I've been down this road before

    Posted by
    Posted over 2 years ago
    Back in 2004/2005 my wife was struck down with meningitis. Fortunately her illness left her with some sight/hearing difficulties & slightly lame. But after a few short months she recovered enough to go back to work part-time as a nurse, (her chosen profession since leaving school). Near the latter...

  • Blog Post: New to the site and recently diagnosed

    Posted by
    Posted over 3 years ago
    Hi, I'm new to the site.I was diagnosed with Hodgkin's Lymphoma stage 2a almost nine weeks ago. So far I have had two lots of ABVD chemotherapy and I'm feeling OK. I've joined the site because I would like to know how other people are coping both with the experience of having cancer and...

  • Blog Post: has anyone had AVBD chemo?

    Posted by
    Posted over 4 years ago
    Hi Everyone I am new to the" blog communiccation" but the isolation i feel at present has pushed me do something positive! I have had 2 (4 treatments) cycles of AVBD chemo they didn't go too well at first! Liver was very upset and decided to give up for a while followed by a blood clot...

  • Blog Post: my gay lover has hodgkins desease and i dont know where else to turn to

    Posted by
    Posted over 4 years ago
    my partner of 4 years has had a few cancers before him and i got involved and after we got involved it kept changing from one cancer to the other when i met him i believe he had spinal cancer then 2 years after that the doc said it was spreading to the liver and pancreas then i guess those went dormant...

  • Blog Post: Daughter's cancer

    Posted by
    Posted over 4 years ago
    Hi, I just recently joined, having been on the 'other side', the Macmillan Share site, for almost a year now. Our lass, C has had lymphoma now for over 4 years, diagnosed 20th October 2004. she has had a great deal of treatment, all the usual 'gold standard' stuff, ABVD, ESHAPP, BEAM...
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