I have been on hydroxycarbamide for the last 12 years but my platelets have continued to climb peaking at 800 a few weeks ago. It has been advised for me to move on to interferon. Is there anyone who can share their experience of the transition. I am 77 years old and fairly active. Be great to hear anyone’s opinions. Thank you!
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Hi @Bruce
Firstly welcome to the forum and thank you for posting
I’ve had the reverse of your situation whereby I started on interferon and now moved to hydroxycarbamide.
In my experience so far, I’ve noticed much more side effects being on hydroxy then I ever did on interferon. All I had with interferon was flu like symptoms at the very start which after a day or two disappeared.
There are lots of posts on the forum regarding people’s experience on both but I guess the body does what it wants too at times in that after a while the meds start to fade in their effectiveness. Bit like doing the same exercise over n over.
There are lots of pros and cons of any course of treatment and though doctors give us their medical advice and expertise of knowledge though experience, ultimately it comes down to you to decide what’s best for you.
I’m more than happy to answer any questions on interferon as I was on it for a few years and just recently moved to hydroxycarbamide so be great to trade experiences
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Hi @Bruce a great big welcome to our forum and a very good question.
@Rammie18 has given you a great response.
I also think it helps writing down all your questions to ask your medical team, a specialist nurse, if you have one, is a good contact.
I hope others will share their experiences.
The only proviso to peoples responses is we are all very unique, complex beings with individual medical histories and reactions to drugs.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888, banks holiday service hours apply
Please do let us know how you get on and more about you. Look after yourself
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Thank you! Over the years I’ve struggled with fatigue due to anaemia but even so I regularly enjoy indoor rowing and cycling. One bad side effect I have really struggled with whilst taking hydroxycarbamide is skin cancer on my forehead which has had to be removed 5 times so far.
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Oh buddy really sorry to hear that… that is one thing I’m really concerned about especially as summer approaches and losing my sister to skin cancer…
I personally believe the fatigue to down to low iron, I was anaemic before blood cancer diagnosis which I think kept my Polycythaemia vera (PV) undetected. I often have to push for an iron transfusion as it often hits crazy low levels and causes a surge in itching and tiredness.
I also have had two heart attacks which I think was down to stress and possibly the “jabs” but it’s hard to say that was the cause which spooked my Haemotologist to move from interferon to hydroxycarbamide.
Generally I was doing really well on interferon and really wouldn’t argue returning. But experts have found that hydroxy works a lot faster than interferon.
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Hi @Bruce I have Chronic lymphocytic leukaemia (CLL) and was diagnosed 20 yrs ago I have always been on ‘watch and wait’ (active monitoring) but my main symptom is fatigue which I have learnt to manage over the years as I have really got to know myself and how I tick.
I had skin cancer on my head, an op and skin graft on my head in 2016
It returned in 2020. I had another op.
I have also had it several times on my face and have had lots of lotions and potions and my GP has his freezing gun ready pointed at me as I walk into his office.
I have also had heart problems over the last year.
I have probably confused you now.
I am a great walker which is a good occupation if you are as nosey as me.
Be kind to yourself and please do keep posting.
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Thank you for your reply-digesting all your experiences
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