Interferon

I was diagnosed with primary Polycythemia Vera just over 2 years ago. I have been having venesections and having homeopathic and bio resonance treatment as very reluctant to take the medication offered. I have been keeping my red and white blood cells within limits but my platelets have been high for some time. Ranging from 626-820. Because of this I have now made the decision to try interferon as this seemed to be less harmful to my body. (None of its great but this appeared to have less than the hydro drug )
I had my first injection last Monday and have since lost my appetite and have diarrhoea. I also have some inflammation around the injection site and feel exhausted. I’m not planning on giving up on the treatment as I’m sure these side effects are hopefully temporary, but is anyone else on this and anyone have any ideas how to help me through this as naturally as possible? I’m a fit active 66 year old female. Thank you :pray:

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Good evening @Helena, and a warm (as long as you are indoors! :cold_face:) welcome to you. I have a different Myeloproliferative neoplasms (MPN) to you; I was diagnosed with Essential Thrombocythemia almost 6 years ago and have been on Interferon since April 2018.
I’m sorry to say that I have had a poor appetite for much of that time, and from before then following on from my heart attack 6 months prior to my Essential thrombocythemia (ET) diagnosis. Fatigue is my constant companion these days, but I put some of that down to my 1st (so far!!) heart attack, the blood cancer and its treatment, as well as my age 59 in March. One does become accustomed to the tiredness, or at least used to being so tired, but life does go on.

Feel free to ask any more questions.

Take care, stay safe and remember to be kind to yourself.

Oh yes, and keep on smiling too.

Jimbo165

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Hi @Helena I am so glad that you have found us, welcome
@Jimbo165 has shared his experiences with you.
I attach the information on Polycythaemia vera (PV) from the Blood Cancer UK website
What is polycythaemia vera (PV) | Blood Cancer UK
Perhaps it is worth contacting the department who prescribed you the interferon to tell them what you are experiencing, the severity and impact on your life so they know what is going on.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
If it was me it would have been a big dilemma to go onto this treatment regime.
Please do let us know how you get on and please do keep posting.
Look after yourself

Thank you Jimbo, I understand how you feel with constant tiredness, I was experiencing that before starting treatment. But I am anaemic so no surprise there. But today, the sky is the most beautiful blue and the sun is shining here. There is always something to be grateful for. A lovely slow walk with the dog this morning before I gear myself up for my second dose this evening!
Take care of yourself :heartpulse:

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Thank you Erica, I’m fortunate that the specialist nurse spent a long time last week with me and will be calling me next week after my next blood test. I expected side effects but not the ones I’m experiencing :rofl:. But it’s early days and I’ll stay positive that this will subside to some degree and I’ll get my head around it. I’m sure some of the symptoms are anxiety related too. I’m grateful for the support I’ve had already from this forum, just knowing you aren’t alone is a big comfort. :heartpulse:

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Hi @Helena yes, a beautiful day here too.
Yes, the tiredness/fatigue is a thing many of us live with no matter what blood cancer we have and whether we are on treatment or not
I attach a link to the Blood Cancer UK website section on fatigue if you are interested
Blood cancer and fatigue | Blood Cancer UK
Enjoy your lovely slow walk with your dog, I am a great believer in fresh air and reasonable exercise, I can picture you now, enjoy.

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Good evening @Helena and @Erica, hope you are both well. I encountered a brief snow squall on my way to work around 6:30 this morning, but it didn’t amount to much other than to add to the dark and gloom and coldness, but then the weather rapidly improved up to a scorching +2 degrees C!

Tiredness/fatigue is probably my most debilitating symptom, closely followed by itching and poor appetite, but you really can get used to almost anything, especially when there isn’t much of an alternative!

Stay safe, take care and keep on smiling.

Jimbo165

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Hi Jimbo
Well, we’ve had a very sunny cold day today after grey skies yesterday. I have found the itching subsides a bit if I have a hot shower followed by cold, takes a bit of getting used to but helps the immune system. I’ve also found sugar, how I love my chocolate!, also can make it worse. I’ve been given some homeopathic remedies which have helped too. The tiredness, I’m just a kill joy now and go to bed most evenings by 9.30! Especially if the fire is on at this time of year that makes me very sleepy :rofl: fortunately I’m now retired so I don’t have the deadlines one has when working, but I keep myself as busy as possible with teaching dancing and going to dances, dog walking and mindful art.
Take care and keep positive
Helena

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Hello @Helena
I was diagnosed with Essential Thrombocythaemia last year, 8/9 months ago. I had hoped that to reduce my risk of blood clots I could simply take low dose aspirin and not have to go on anything cytotoxic as I was asymptomatic and otherwise healthy. However my age- 63 at the time- was a risk factor I hadn’t considered and I was advised to start medication. I was concerned about Hydroxycarbamide, didn’t want to be ‘toxic’ or take a chemotherapy tablet every day and was offered Peg Interferon Alpha 2a (Pegasys). I am being treated at the UCH Macmillan Cancer Centre here in London. For my first injection I attended the hospital and was shown by a really lovely nurse specialist how to do the injection- he prepared the syringe, talked me patiently through it and I then did the actual injection myself.
I initially felt quite tired and a bit headachy/ generally achy, but have been lucky enough not to have the side effects you mention, although did have some loss of appetite, fatigue and slight nausea for a while. I found that eating small amounts of food more frequently and drinking lots of water (in small amounts throughout the day) meant I was able to eat enough, and my appetite returned to normal eventually. I continue to tolerate the interferon well, even after doubling the weekly dose to 90mcg 3 months ago after my platelets rose again, having fallen very quickly in the first 6 weeks or so.
I hope that your side effects lessen soon and that the interferon proves effective. When I was worried, after my platelets started rising again, that I might not tolerate the higher dose, or that the interferon would not be effective, I came to realise that if I had to change to try Hydroxycarbamide, and if it were more effective, that I would be ok, that I could probably just get on with it because I had to and continue to make the best of my health by eating well and staying as fit as I can.
Best wishes with it all, Fiona

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Oh @Helena I am in bed before 9.30 !!!
It sounds as if you have an active lifestyle which is great during the day,
Yes, a roaring fire would probably send me to sleep too.
I am a walker and do Pilates.
Look after yourself

Great to hear from you again @Fem
It sounds as if you have had a lot going on since we heard from you last and sharing your experiences with others on our forum is what our forum is all about.
Look after yourself and please do keep posting

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Hi Fiona
Thank you for your reply, it has certainly reassured me. I messed up the injection Tuesday evening so didn’t end up with as much as I should have had, consequently I’m not suffering too many side effects this week! :rofl: but I’ve cut myself some slack and thought next week is another chance to get it right! Like you I have resisted the Hydroxycarbamide and am being positive that the interferon will work well. I also didn’t have any symptoms (or at least nothing noticeable) which is somewhat irritating that I now have! I’m continuing with my natural remedies to keep my body in the best possible shape to cope with the treatment. I am not comfortable with reaching out for help, so I really appreciate your reply. Take care of yourself :heartpulse:

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Thanks Erica, I’m sure you find the Pilates and walking a great help. I certainly find my yoga practice helps with my mental health and physical well being. And the dog gives me the opportunity to walk in our nearby woods and connect with nature. There’s a lot to be grateful for that’s for sure. Take care :heartpulse:

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Hi @Helena, yes, definitely cut yourself some slack, practice makes perfect, and I think you are doing really well.
Be very kind to yourself

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Hi Helena I hope your side effects are settling down. I have Polycythaemia vera (PV) and am into my 3rd week of Pegesas. Ive been lucky witht he sude effects. I started on 45mg once a week. My haemotologist was happy with a liw and slow approach as I requested.
I hope your measurements are normalising. I’m waiting to see if there is any effect for me.
Everything Ive read and listened too tells me Inf is a better long term bet for most of us as it has a track record of reducing the rates of JAK2 mutations.

I had Pneumonia and Shingles vaccines last week and they did knock me for a day.

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Hi DougyW
Thanks for your reply, I’m on week 5 now. Initially my platelets dropped by over 200 but this week’s reading had only dropped by 1! I was on 45mg but because it hadn’t reduced much this time the specialist nurse said to take the full dose this week.
My stomach had settled thankfully but a bit dodgy this week after the full dose, a bit of muscle ache and headache that comes and goes fairly quickly without any paracetamol. Tiredness, funnily enough two days after the injection. All in all I’m coping with the side effects as naturally and best I can. How’s it going with you? I hope you’re feeling much better after the shingles and pneumonia vaccine.
What a journey we are on, fingers crossed this treatment works its magic for us. Take care and one step at a time :heartpulse::pray:

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Ill take my 4th dose on monday and then get blood tests on Wednesday. So im looking forward to see if there has been a HCT reduction.
Still no real side-effects which is good. I push for 65 rather than 90 if it needs to go up.

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Hi @DougyW great to hear from you please do let us know how you get on on Wednesday.
Really look after yourself.

My HCT was .43 so the doseage is being left at 45mcg. Im happy with that :smiling_face:
I asked for the Allele Burden to be checked but was tolf to wait for a bit longer as thats not normal practice to monitor. My spleen check has been booked which is positive

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All and all that sounds positive @DougyW
Look after yourself.