Rheumatology - post blood cancer treatment

Hello
I have been referred to rheumatology due to pain in my joints etc. I am just wondering if anyone else has experience of this after their treatment? I had 4 cycles of chemotherapy for AML in 2015 and ever since then I have been in pain, as well as suffered fatigue. I also want to go along to my appointment armed with as much information as possible as from experience I find that other specialities don’t understand blood cancer treatment and late effects etc… thanks

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Hi Anna. I have been on gout medication (which is linked) for over a year. I had a couple of bad flare ups and needed antibiotics, but have been put on allopurinol as it could impact on heart problems. I have cut down on high purine foods, and have cut out red wine completely. You may find the link below useful

http://www.ukgoutsociety.org/

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I will take a look, thanks for your help x

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@AnnaMam I’m so sorry to hear about your joint pain, it must be so frustrating to feel like not everyone has full understanding and appreciation of the late effects you have been experiencing. I was wondering, what about the blood cancer consultant/ clinical nurse specialist who were overseeing your care? Were they able to give any advice at all?

Great suggestion @Pisces56!

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Yes Sue, they are the understanding ones but it is getting my GP to acknowledge it. My Consultant asked my GP to refer me for tests which my GP ignored and when I explained about my low vitamin D, even with a high dose on prescription from my consultant, my levels are still below what they should be… her comment was ‘everyone has low vit d’ totally missing the point that this is common in cancer patients and I am not ‘everyone’ due to my medical history. Its well known that Vit D adds to some of the symptoms I have. So that didn’t fill me with confidence… she was not prepared to take on board anything my consultant had written in their long letter explaining my situation… she wanted to send me off with fibromyalgia (which actually is a term given for a group of symptoms, not an illness)…

I went back to my consultant who was not happy and so wrote again asking for referrals to rheumatology etc. Now I have that referral but no communication from the GP… something I will pick up at some point because they need to understand my situation. It is well documented that Leukaemia patients have joint/hip pain due to bone marrow damage from the cancer and chemo…
Unfortunately primary care has to refer you to certain services and secondary care can’t… they have to ‘ask’ the GP to. I will go back armed with information but when I went before I wasn’t expecting this reaction so didn’t . It seems GP’s don’t know much about late effects either!!
I sat there and told her about how the constant pain is impacting on my life, waking me in the night, every single night but she had nothing to say to me!!

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Morning Anna. Will reply some more later…am on my way to dentist now, but I have been suffering more the last fortnight, as I think damp weather is not helping. Keep chin up :kissing_heart:

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No worries , you look after yourself and hope you get sorted xx

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Hi Anna. My granddaughter sent a photo on Sunday night as she had lost her first tooth, and shortly after I lost a chunk of tooth. We do have a very close relationship, but I hope it doesn’t happen every time as it is going to cost me £300. I have more caps than teeth…and G is having one next week. Anyway, while having to fork out for this I decided I had better pay the balance of our holiday while my credit card still had credit :rofl: :joy: :rofl:
Back to your problem! I have had worsening joint and back pain, which is why I cannot stand for too long. As my haematologist has retired, and I have been discharged now, and had no CNS, my GPs are responsible for my care. The one I try to stick to is very good, and did suggest being referred to pain management. I am limited to what I can take because of heart failure, and have paracetomol or cocodamol if it gets unbearable. Since a couple of very painful bouts of gout I am on medication, and have to have a blood test every year. I have had to cut down alcohol, and also red meats, sausage, bacon, mushrooms and eat mainly root veg. I also find strawberries and grapes are a no no. For someone who has always enjoyed a lovely restaurant meal it is not much fun.
My luxury now is a fortnightly massage with a local lady. She also does reiki and reflexology and other alternative therapies. As she mixes her oils according to what I need that day it is very personalised, and we also have a good chat beforehand, so I feel as if I get to see a counsellor at the same time.
I think it might be worth your while taking some of that info into the GP, after all they cannot know everything, and can’t check every patients’ complaints on the web. It has become a standing joke in our house about whether I had a good night’s sleep. If I go for a 3 hour stretch without waking in pain or needing the loo (gynae problems too) I have had a good night. Take care xxx

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@AnnaMam Anna, I’m so sorry to hear this, this must be so frustrating for you, it’s really encouraging to hear that your consultant has been supportive at least. It sounds though, like you have been really proactive in keeping informed with information to help with your case. Has this made you feel a bit more equipped when speaking to your GP?

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@AnnaMam,
I complained of pain in my thumb joint at a couple of years post SCT & my consultant said that it was just ‘old age’!
It’s steadily got worse over the last 8 years & kept mentioning it at my Haematology appointments & had X-ray @ 9 yrs. The result was not conclusive & told it was down to normal wear & tear. However, worsened by 11yr check up & so X-rayed again & told I had Oesteo-Arthritis in the thumb joints. Advised by my GP to take paracetamol when necessary, told I could have an injection but that this might go wrong!
It took me 9 years to find a GP at my practice that would ‘own’ me. Previously i felt they could have killed me through ignorance & indifference.
Luckily she has had familial experience of blood cancer & she understands. She remembers my situation & understands about the gremlin that sits on my shoulder & laughs at me from time to time.
My previous experience was my GP not listening to me, prescribing meds from the family that I am allergic to, luckily I reminded him as he raised the script. I hate to think what would have become of me?
I also saw this GP as I ticked all the boxes for a lack of Vitamin
D & he told me I should stop taking Aciclovir (take for ever as had ocular shingles) & this would sort out the problem. I flatly refused & demanded a blood test. The result was I needed to take supplement Vit D. He prescribed for 3 Spring months, by Autumn I had same symptoms & the new GP told me to take it for rest of my life. She couldn’t understand why he stopped it.
Good luck with your next appointment. Stick to your guns as you probably know more about your medical situation than your GP.
All the best,
Christine

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Hi, the report on my final PET scan after chemo said clear of cancer but looks like polymyalgia rheumatica in the hips and lower spine. The consultant referred me to rheumatology and despite them chasing and my GP writing to chase, I’ve heard nothing in over a year. I would still like a proper diagnosis.

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Hi @BurntToast, a great big welcome to our forum. I bet you would like a proper diagnosis. I have found I really need to keep chasing medical people sometimes, but being aware of the Covid-19 effect over the last 4-5 mths.
I am also awaiting a couple of rheumatology appointments.
You are in the right place as we are here to support each other and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk if you need to talk to someone. I await hearing more about you, take care.

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Welcome to the forum. I developed gout 10years post SCT, whilst still under the care of my haematologist. My GP was great and I had to start taking Allopurinol as I have heart failure too. I got in touch with my haematologist to ask if this was connected to my complicated treatment history, and he said probably not, but if I needed help managing my rheumatology symptoms to get in touch. He would have recommended Allopurinol…which my GP was already doing, so I was happy. I have a blood test annually to check all is under control, but otherwise I manage.
Have your symptoms got worse, and do you have pain? Do you still see the original consultant? Is there another hospital that your consultant/GP could perhaps refer you to?
@Erica has given very good advice about contacting the Support services team if you feel the need to speak to someone. Best wishes

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Hi, this is certainly interesting to read. I was finally referred to rheumatology not long before the covid outbreak… I haven’t heard anything though which is understandable but I will chase at some point. It is so frustrating because of the constant pain and wanting an answer so that you can then know how to manage it. Keep us updated and make sure you chase it up.

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