Hi- I’ve only recently been diagnosed with essential thrombcythemia as well as Chronic lymphocytic leukaemia (CLL). I am due to start treatment with interferon and am so worried about the side effects- is it very common for hair to thin? If I don’t get bruising or tingling in extremities at the moment is this going to start once I start on the treatment? How many people DONT get side effects? Thanks
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Hi @Gillyj
Firstly welcome to the forum and thank you for posting.
I have a different blood cancer to you but was on interferon for about 18months.
Though I wasn’t given treatment once I was diagnosed I did do some reading on the types to expect and of course the side effects and it’s very scary and will make anyone anxious.
I did really well on interferon in the fact that bar the first injection where I was given double dose by mistake by the nurse and I went on to suffer flu like symptoms later that night I was absolutely fine thereafter. I didn’t suffer from major fatigue (which can be caused from low iron) or any noticeable hair loss/thinning. I was able (with caution) to continue living how I was with no hinderance at all… only my closest friends and my bcuk forum family know of my cancer and while on treatment no one would ever have guessed I was unwell or had “cancer”.
Medical treatment can be very hit and miss and unique to every individual. Side effects are given as like a disclaimer and the effects of say the 10,000 people who trailed the medication. You maybe in the minority of those who experiences symptoms or the majority of those who didn’t?!
But you’d think that the course of treatment selected for you is chosen best based on you, your age, your general health, your body, data, knowledge and experience. It’s always nervous starting something new and I know some find comfort knowing the worse case scenario so they can be prepared if it comes into fruition but whatever happens when starting treatment it’s important to keep in contact with your medical team about how you are feeling to access if any symptoms you are feeling in a phase or something more abnormal.
If it’s any comfort ive heard that if treatment does thin your hair, it often returns to some kind of normal if treatment is changed.
I’m really sensitive about my hair which in the grand scheme of things would I want to try and extend my life over losing my hair… well I know which my loved ones would choose…
Anyway sorry for sounding preachy… to answer your question… I did really well and coped with interferon really well… and injecting yourself though the thought of it was scary actually wasn’t bad at all and actually more pleasant as you are in total control of it, you can go as slow as you like and you know when that “sharp scratch” is coming
Regarding bruising, I didn’t experience any difference even when I banged into things… I know some people bruise like a peach so it may not be related to taking Polycythaemia vera (PV) or treatment.
One thing I did get during my early days was the itching which I how put down to incredibly low iron/ferratin levels
Happy to answer any of your questions if you have any but also remember the bcuk support line where the nurses are amazing, helpful and super supportive
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Thank you that’s good to hear! I work on the basis that if I think the worst then it’s often better than I think. This was the case with the bone marrow biopsy! But it does mean I stress with the worrying. Losing my hair or discoloured teeth would upset me greatly.
When you suffered flu like symptoms how long did that last? And I’ve heard the longer one is on interferon the worse the side effects are - have you heard that?
I appreciate your support, thank you
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My flu like symptoms were gone after 24hrs.
The issue with interferon is that it’s a relatively new way of treating Polycythaemia vera (PV), so its long term effectiveness is a bit of an unknown.
From what I remember I didnt notice any symptoms getting worse as time went on.
Like I mentioned you will hear many people’s negative experiences of interferon especially in facebook groups from folks around the world where people have a different health care system and unsure about the legitimacy of the people posting.
I’ve watched plenty of videos/webniars from healthcare professionals for at least my type of blood cancer, interferon out of the main two options is the more effective and quicker to get results. It’s also not a chemo drug so works differently.
Like I mentioned everyone’s reaction to a drug can be different and if you were to lose your hair or it thins you can always go back to your specialist.
Note hair loss and thinning is common as we get older and it’s extremely common under stress. Try and make sure it’s not just a coincidence as you may be mentally rejecting a drug that in fact may make you continue as normal than any other
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Hi @Gillyj I just wanted to welcome you to our forum and I certainly cannot better @Rammie18 's brilliant response and his experiences are so valuable.
I have Chronic lymphocytic leukaemia (CLL) and I find if I get an ache or pain, lump or bump I do not know if it is my Chronic lymphocytic leukaemia (CLL) or something completely different, we are such complex beings.
Now all medications/treatments are individually chosen for the patients individual needs as @Rammie18 says.
I have found I don’t deal with what personally stresses me as well since diagnosis, I have also realised that I get I get worn out by emotional, medical, psychological, physical or practical things.
Look after yourself and please do keep posting what is going on.
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Thank you - I really appreciate the support you have both given me. I think in the early days when it’s all so new it’s very daunting not knowing what’s going to happen or how I’m going to respond to treatment. It’s great that this forum exists to help people like me!
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Hi I have Chronic myeloid leukaemia and have just been diagnosed with Essential thrombocythemia (ET) needing to be treated with Interferon and feel the same way as you. I will need to pick it from the hospital next week together with a change in my Chronic myeloid leukaemia medication. I am not worried about the actual doing of the injection but i am worried about side effects like you. I think it is a case and wait and see and i did see something suggesting you keep a diary of how you feel to discuss with your consultant. I am not looking forward to it at all so wish you well too.
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Good afternoon @Gillyj & @Chrispy and everyone else.
I was diagnosed with Essential thrombocythemia (ET) back in 2018 and have been on Pegylated Interferon since then, at various dosages and frequencies but seem to have been settled down onto 90mcg fortnightly for the last couple of years, although it seems as though the efficacy of my treatment may be lessening a little now. Or my general health is declining. Or simply because my age is increasing on a daily basis. Take your pick!
My main side effects are an incredible and all encompassing fatigue, (not helped by long hours at work!), easy bruising (mostly acquired AT work!!) and itchiness. Secondary effects are mostly confined to sore fingers and feet and a generally poor appetite with occasional sudden urges to eat, usually when it is impossible to do so!
Life does go on and we all learn to live with side effects that our different cancers and treatments throw at us.
Stay safe, take care, keep smiling and remember to be kind to yourselves.
Jimbo165
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Hi Chrispy- can I ask how long you’ve had Chronic myeloid leukaemia? Were you needing treatment for this? I pick up injections on Monday- starting on 45 for the first 6 weeks and then increase if all ok.
Will be thinking of you starting yours - will be good to share notes on side effects etc!
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Hi @Jimbo165
It’s good to hear from someone else a few years down the line from me. You mention bruising, fatigue and sore fingers and feet- do you think these are to do with side effects of interferon or from the condition itself?
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Hi @Gillyj, this is a really good question and one that I have asked the different consultants that I have seen over the last few years and on many occasions now. They can’t say for sure as to whether it may be the condition, the treatment, my comorbidity (I foolishly had a heart attack 6 months before my cancer diagnosis!), simply my age (59) or any combination of the above!
The foot discomfort is mostly in my left heel whilst the finger issue is at the tips of most of my fingers on both hands. I also feel the cold a heck (the system won’t allow me to use a stronger word, and dear@Erica would tell me off if I did!) of a lot more since my heart attack too.
All in all though, I can’t complain about life too much and this forum is a wonderful place to vent feelings (and fears) without burdening my daughters.
Take care.
Jimbo165
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As you say it’s a great forum for discussing and getting support. I used to nurse so understand a fair bit about the condition but no idea about interferon- a whole new ball game!! I’m 67 and very active with gardening, tennis and granddaughter duties several times a week- I worry about maintaining my quality and enjoyment of life!
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Hi @Gillyj . I have had Chronic myeloid leukaemia for 20 years and have been on TKI’s since the start for that. My platelets started going up about 5 years ago but Essential thrombocythemia (ET) has only been diagnosed recently. I have just turned 60 which also means the consultants needed to consider treatment. the two blood cancers are unrelated i am told and a very unusual situation.
I am also due to start on 45 with a check up in 4 to 6 wks time but she said i will stay on the low dose for a little while until they see how my body reacts. I should be picking it up this week from the hospital so it would be good to compare notes as we go through this together. I try to keep active too.
I was given a leaflet on the “Myeloproliferative neoplasms (MPN) voice” website ( this is the initials M P N but the post keeps changing it to the full words )about the treatment and it warns that the first week is the worse with flu like symptoms. It suggested taking paracetamol.
Good luck and keep in touch
x
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Very similar to me except mine is Chronic lymphocytic leukaemia (CLL) with Essential thrombocythemia (ET)- both diagnosed at the same time just recently but my consultant thinks I’ve had it for a few years. What are TKI’s? My platelets atm are 750. Yes do keep in touch and good luck this week
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TKI are the group of drugs used to treat Chronic myeloid leukaemia. they are very good and Chronic myeloid leukaemia is controlled to the level of only being detected at 0.01%…
My consultant has been looking for Essential thrombocythemia (ET) for years but nothing was conclusive until now. My recent bone marrow biopsy confirmed it but previous ones did not. My platelets are at 1700 now so need to be treated. I have been on aspirin for a few years as the platelets increased.
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