Hi,
I was first diagnosed with Hodgkins Lymphoma at the age of 25. I have since relapsed 3 times so in total over the years have had 4 rounds of different chemotherapy regimes, some including high dose steroids, an Allo stem cell transplant and finally a stem cell transplant from an unrelated donor in 2015. I relapsed shortly after the transplant in 2015 and after receiving palliative chemo I have been in remission since then.
However, I have suffered from many side effects from treatment and transplant. One of them being Avascular Necrosis in my joints caused by the high dose steroids. I’ve had 6 joint replacements so far with more to come. I suffer from chronic pain due to this. I’m 34 now and I’m really struggling to cope with this and knowing it will effect me for the rest of my life. I know I should be grateful to still be here, which I am, and that people are going through worse things than this, but I feel really alone with this. It’s a rare side effect and I would love to hear from anyone who is experiencing the same thing. Or anyone who has chronic pain after cancer and ways to cope. I was on many different pain killers at a high dose. However they made no difference so they were stopped. I have been seen by the pain clinic, who have tried Cognitive Behavioural Therapy (CBT) but it’s not working for me. I’ve tried cannabis oil (the CBT non-high legal kind) but again, not helping. My anxiety is through the roof, waves of depression hit me and I rely on medication to help me sleep which makes me feel tired all of the time. Any suggestions/tips would be greatly appreciated
Hi and a very warm welcome to the online community although I can see you joined many years ago.
I can't help with your questions but thought it might be an idea to join and post this in the Hodgkin lymphoma group as well, as there you may find others who may have had the same experience as yourself.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi , I am Mike Thehighlander and I am dropping in past from our Stem Cell Transplant group where folks who have been through SCT hang out and support each other.
We have had a number over the years who have found themselves in the same position as yourself so it would be worth posting in this group as well.
Follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group.
((hugs))
Hi Emma, we have folks who have had very bad side effects so don't worry about posting.
I think openness in all aspects of SCT is the best way forward as the reality of going into Stem Cell Transplant needs to be fully understood.
When I went into my second Allo I was told "kill or cure"....... but as my clock was running out we went with the throw of the dice.......they came close to killing me off........ but I survived - no cure, but happy with remission.
I also have been left with some long term medical issues but not to the extent that you are having to deal with.
We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
((hugs))
