ET Side Effects

Hello AJP57,

I have MF and the Jak2 mutation. Fatigue, bone pain, night sweats are symptoms of the disease. Ruxolitinib (Jakafi) helps to ease these symptoms.

Naugus

Hi AJP57  my dad has ET, and I would say it is a bit of both. When my dad first started on the medication the fatigue got really troublesome for him, but after the first year it did seem to settle down a bit. I have noticed he is much more active now, and at 78 he makes sure he goes on the treadmill for an hour every day. 

I think the best advice would be to listen to your body. Rest when you need to. It took my dad a long time to realise this, as he wasn’t one for napping during the day, but he will do that now if he needs to. 

Hi there.  I have ET and am on hydroxycarbamide. I’ve been told it’s mainly the disease but the medication also has an impact. I also found that I got other side effects that came and then went (mouth ulcers, peripheral neuropathy), and now I have issues with my gums. Fatigue is the main one though.  I hope you get lots of support from your specialist nurse and medical team.  Others here will have good advice. Wishing you all the best.   Skaro

Same here jak2 positive ,E.T and stage 2 Myelofibrosis pain dizzi night sweats ,temper as cannot do most things I love refusing treatment just Asprin and use fitness as to forget the pain lots of cycling and trekking call it my theraphy,hate cannot run as up to 53 was running marothons, am 60 ,hate it all want to block all away ....caya

Hi Caya you sound like I did with my first triple-negative breast cancer. I was 38 years old. Bad prognosis. Since then I have had another triple-negative breast CA at 40 years and now MDS with thrombocytopenia 24 years later. I was never supposed to live this long. First cancer I didn’t want to know anything was mad at doctors who gave me prognosis. I told them they weren’tGod they didn’t know when I was going to die.  Dealt with awful fear. It was on my mind night and day. First thing I thought of in the morning. But I got through it and learned to deal with my fear and my anger. New God had a plan for me and had to learn to trust. Next cancer I wasn’t afraid. Dealt with it again. Knew my kids and grandkids needed me so I took their pills. This cancer I want to know everything about it so I can stay at least semi-comfortable. My kids and grandkids and new grand baby need me. I feel the pain you are going through and I understand it and I feel the frustration and anger you’re feeling. I hope you learn to live with this cancer and fight it and know you are not alone in this. We all feel and know what you are going through. Cathy B24

Hi Cathy thankyou for your reply am sorry to hear about all you been through you are one brave lady ,as for me all that know me stay that I am a strong person but to be honest dont feel strong nor brave enough to take treatment all I keep seeing myself with lots of side effects I keep reading about the interferon alfa that my hemotologist wants to put me on and hate what I see when reading on it so that is why dont know is it worth going through chemo or shall enjoy life till the out come its so horrible ,take care and thanks again 

I looked up the medication and it sounds really complicated and awfully scary. I can see why you hesitate to use it. Like I said, I am new to all this and haven’t even started on any medication so maybe I need to curb my enthusiasm so to speak. I’ve never read of anything with that many side-effects. Whatever you decide to do, I wish you well and I think you’re a very brave lady. Cathy B24.  

Hi Caya,

I've recently been diagnosed with ET/JAK2, & chose Interferon injections (despite being terrified after reading all the 'Bumph!). I plumped for that because it mimics a protein already found in our bodies.  I found it okay for me, but I suffered with serious depression & am having a break for now.  I'm expected to taken Chemo meds for life but am really loathe to take the alternative tablets, the side-effects sound just horrendous. I too have done sport all my life & hate the fact I do nothing now (Oesteoarthritis/ blood clots in my brain etc) & like you am thinking about not taking anything & having 'Quality' of life rather than 'Quantity'! I am not coping with the pain & being in my head! I understand exactly where you're coming from & if you need any more help (if I can) I'm here. There are certainly some amazing people on this site & I do wonder how the hell they do it!!

Hi yvarna,yes intrefon alfa givex deppression and more pain hence I know what I got dont want to put horrible chemo in my body ,so they say to us have this have that but hey cancer will not be cured so for me I say whats the point,when I go I go not gonna live another 60yearsmlost my husband he was 18years  were married 6 weeks widowed at 18 so having cancer it is what it is at the end of itI feel cos doctors know you got no cure they use you as a test drive maybe its just me how I feel, I admire the brave ones out there that take what they are given dont think its gonna be m ,so I keep doing things that make me happy my passion fitness and  travel maybe I die happy hehe anyhow stay strong keep going need a chat here too take care

Hi folks…. although I have a different blood cancer I was injecting Interferon Alpha for a good number of years….. with no side effects.

It is important to understand that Interferon Alpha is not chemotherapy but is a protein that occurs naturally in the body in small amounts and encourages your own immune system to kill cancer cells.