taffd

  • Hi crawf,

    I’ve been on monthly pamidronate rather than zometa, finished chemo Feb 2016. I’ve never thought I had any effects from it.

    While on chemo, CTD, I used to have moments of weepiness that lasted seconds, for no apparent reason, so I assumed they were med-related.

    I’ve had these occasional moments from time to time since stopping chemo…[Read more]

  • taffd replied to the topic multiple fractures… in the forum Newcomers 4 years, 2 months ago

    Hi auldolf and welcome,

    It is indeed a bit of a shock and we can indeed go from apparently healthy to falling apart very quickly.

    I suggest that your doc is definitely giving you the gospel; when I was first diagnosed, the weight of my leg with my foot off the ground, was sufficient to cause a fracture to my hip bone, luckily not a…[Read more]

  • Hi Lisa,

    I had a prophylactic nail put in my left femur, as it was about to break. At this time, the weight of my leg was enough to fracture my pelvis, such was the state of it due to a large plasmacytoma.

    The morning after my op, I was asked to get out of bed and to see if I could weight bear. I was absolutely stunned to find that not only…[Read more]

  • taffd replied to the topic Radiotherapy Questions in the forum Newcomers 4 years, 3 months ago

    Hi again Karl,

    ‘Fraid I’m not going to be of much help as my plasmacytoma was in my pelvis. About 3 months after mine finished I got colitis which turned to sepsis. Emergency life-saving op to remove sigmoid colon and now I have 2 bags.

    So RT side effects can be mild or severe and can occur years afterwards.

     

    Best o’ luck

    Taff

  • taffd replied to the topic Radiotherapy Questions in the forum Newcomers 4 years, 3 months ago

    Hi again Karl,

    ‘Fraid I’m not going to be of much help as my plasmacytoma was in my pelvis. About 3 months after mine finished I got colitis which turned to sepsis. Emergency life-saving op to remove sigmoid colon and now I have 2 bags.

    So RT side effects can be mild or sever and can occur years afterwards.

     

    Best o’ luck

    Taff

  • taffd replied to the topic Radiotherapy Questions in the forum Newcomers 4 years, 3 months ago

    Where’s your plasmacytoma?

  • I mentioned quite early on that I didn’t think I’d handle an STC and it was never mentioned again. Luckily, I achieved complete remission with CTD. No mention was made of any sort of maintenance.

    I was also lucky in that, had I had a transplant, I wouldn’t have survived the sepsis that developed from radiation colitis.

  • taffd replied to the topic Just Diagnosed in the forum Newcomers 4 years, 6 months ago

    Had stoma redone today, feeling somewhat bruised. Ent ded though, which is nice.

  • I chose not to have an SCT after induction with CTD as I didn’t think I’d cope with it. Lucky. Had I had one, I’d not have survived a subsequent bout of sepsis.

    I wish you well for yours.

     

    Best Regards

    Taff

  • taffd replied to the topic Canabis oil in the forum Treatment 4 years, 6 months ago

    When I was diagnosed, two of my sons, after reading about it on the internet, sourced two different sorts of cannabis oil. While I had no moral objections to taking it I decided not to.

    Firstly, had I taken it and my condition changed for the better or worse, nobody would have had any idea whether it was the cannabis oil or the medication that…[Read more]

  • taffd replied to the topic Just Diagnosed in the forum Newcomers 4 years, 6 months ago

    Thanks David, I just hope this is not going to be an ongoing thing, having to have it redone every couple of months. I’m obviously prone to scarring/adhesions, which is the reason for the stoma retracting and then closing. And of course, each new procedure leads to more scarring.

    Again, thanks for your post,

     

    Regards

    Taff

  • taffd replied to the topic Just Diagnosed in the forum Newcomers 4 years, 7 months ago

    Another update – stoma has almost closed over again and needs to be redone under general anaesthetic. Awaiting appointment.

    All these stoma problems keep knocking me back to square one and I remain very weak and unable to eat properly.

    But I still ent ded, which is nice.

     

    Regards

    Taff

  • taffd replied to the topic Just Diagnosed in the forum Newcomers 4 years, 8 months ago

    Colostomy had to be redone on Monday due to it closing up and retracting. Very sore post-op, need another couple of months healing.

     

    Regards

    Taff

  • taffd replied to the topic Radiation Colitis in the forum Side-effects 4 years, 8 months ago

    Well it turned out that my alternate theory was nonsense as things were in the wrong place for it to have occurred and radiation colitis is the official diagnoses.

    Stoma has been consistently shrinking, to the point where scar tissue had made it retract completely and the stoma was healing up. Had it redone today and am feeling a bit tender t the…[Read more]

  • taffd replied to the topic Diagnosed in June 2017 in the forum Newcomers 4 years, 8 months ago

    Hi kazza, it sounds as if your mum’s on VTD, where she has Velcade where I had cyclophosphomide.

     

    Regards

    Taff

  • taffd replied to the topic Diagnosed in June 2017 in the forum Newcomers 4 years, 8 months ago

    Hi kazza, it sounds as if your mum’s on VTD, where she has Velcade where I had cyclophosphomide.

     

    Regardes

    Taff

  • taffd replied to the topic Diagnosed in June 2017 in the forum Newcomers 4 years, 8 months ago

    Before I had myeloma confirmed, I’d done a shedload of reading about it. I told my consultant at the beginning that I didn’t fancy a transplant as I didn’t think I’d be able to handle it.

    Luckily, I’m one of the few who achieved complete remission with just the induction regime, CTD.

    Radiotherapy caused colitis and sepsis – had I had a…[Read more]

  • taffd replied to the topic Just Diagnosed in the forum Newcomers 4 years, 8 months ago

    Latest update at 6 months after finishing chemo – no trace of paraprotein, myeloma still in complete remission.

    Ironically, if I’d have had a stem cell transplant, I wouldn’t have survived the radiation colitis and subsequent sepsis.

    I’m struggling to eat enough, with having altered taste and a restricted diet due to the colostomy. And…[Read more]

  • Don’t know if it’s relevant but I had severe shoulder pain that came on gradually, getting worse until I couldn’t move my arm – calcific tendonitis – the calcium builds up in the tendon and the pain is felt when the body reabsorbs it, which can take many months.

    I had the calcium, which had the consistency of toothpaste, sucked out during…[Read more]

  • Don’t know if it’s relevant but I had severe shoulder pain that came on gradually, getting worse until I couldn’t move my arm – calcific tendonitis – the calcium builds up in the tendon and the pain is felt when the body reabsorbs it.

    I had the calcium, which had the consistency of toothpaste, sucked out during ultrasound and was then injected…[Read more]

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