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Recurring symptoms

I have been taking Imatinib since May 2018 after being diagnosed with CML and have been stable since then, the Haematology nurse gave me his card with direct numbers to him. The symptoms of CML returned 9 days ago, I didn't recognise at first this was CML. l phoned the nurse and left my details, about half an hour later I got a call from that department telling me to go and see my GP. Surely l don't need a referral since i'm already in the system and if so why did the nurse give me these numbers? I'm not a timewaster and this is the first time l have called the department.

Yes that’s odd. I’d be inclined to call your consultant directly. I have done this a couple of times over the last 2 years myself.

Out of curiosity what symptoms are you having?

All the best

Alex

Night sweats, nausea, short of breath, painful urination, tiredness.

It is easier to see the Queen than the consultant I have never had a number for her.

The nurse never got back to me, i've got an appointment to see my GP tomorrow but i'm in pain and discomfort now and l can't see anything happening in the near future.

I spoke to McMillan rep and you do indeed need a GP referral if you need an extra appointment.

Ahh ok all of those symptoms you mention are all part of the long list of the medication symptoms rather than CML. I had some diagnosis symptoms reappear months ago and was down to my meds. It scared the crap out of me. The take home is these can come and go over the years...

I’d just call the department and ask to speak to your consultant I wouldn’t waste time waiting for a referral if you’re worried. Which I am sure you shouldn’t be.

Alex

Thanks Alex that is good to hear but I have to go through this slow process, no way I will get to speak to the consultant.