Side effects from treatment: Avascular Necrosis and chronic pain

FormerMember over 4 years ago

3 replies
10 subscribers
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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

moomy over 4 years ago

Hi, so very sorry you’ve been through so much, really tough. Avascular necrosis was something daughters haematologist thought might be a possibility for her, though she actually has very high ferritin levels following almost 10 years of treatment for HL.

One suggestion I have is to ask your doctor if they can do a wide spectrum blood test, to include vitamin levels as many of us are inadvertently low in some, especially D’s.

another idea is a form of mindfulness, maybe even very gentle yoga, which because of your joint replacements might be challenging. Do you have hobbies which you enjoy? Could you begin one like colouring books for adults which is absorbing.

Chronic pain is really hard to cope with, and I would suggest a programme of relaxation and meditation might just help a bit, too. Maybe seek a counsellor who could help here too?

hugs xxx

Moomy

Thehighlander over 4 years ago

Hi again Emma, good ti see you have your post up.

You could also post some questions to Jane, our Nurse who has experience in Stem Cell Transplant and post SCT aftercare.

Just follow this link and post away

community.macmillan.org.uk/.../discussions

Edit - I just noticed that Jane may now be on holiday but post anyway and she I’ll pick up your questions at some point.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

FormerMember over 4 years ago in reply to moomy

Thank you for your reply. I’m already on various vitamins and whenever I have check ups they do a full spectrum blood test. They are also checking my heart due to too much iron in my blood due to many blood transfusions.

I take meds for depression and anxiety which make me feel tired all of the time. I did get referred to a counsellor through the pain clinic. I saw her once but she told me that was her last day as she was leaving and didn’t know when she would be replaced so I’m limbo either that.

ive tried mindfulness before and struggled with it. Can’t seem to switch off. However I will give it another try and see if it helps.

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Side effects from treatment: Avascular Necrosis and chronic pain