Anyone else find the side effects of Hydrea 500MG frightening?

Hi, I’ve lived a relatively good life after being diagnosed with ET at 20 and I’m now 56. Was recently diagnosed with Myelofibrosis as I have some mild scarring in my bone marrow. I’ve been on Hydrea for 25 to 30 years with minimal side effects. It keeps my platelets at 400,000 but I’m pretty anemic. Oncologist wants to switch me to Interferon to slow the progression but I’m jumping through hoops to get insurance to pay for it. Anyone have any advice on how to get it paid for it. So maddening that our healthcare won’t cover medicine needed…. Also anyone on interferon for MF and how are you doing? Thanks! Praying for everyone!!!

God bless you. I will keep you in my thoughts and prayers.

I had ET for over 17 years. I was diagnosed at age 45. After the first 2 years my spleen became intolerably uncomfortable, so was prescribed hydroxyurea - starting at just 3 pills a week... I too let it sit on my nightstand for several days... until I was ready to face a forever change of now being on "chemo". But I realized that I was already at that forever change point with the disease. I did experience a wide roller coaster of side effects from the combination of hydrea and the ET. Some were really uncomfortable, some just a nuisance, and always fluctuating. Yet, for me, all were tolerable. I led an extremely active and physically demanding work lifestyle. Eventually I became resistant to the hydrea, despite having increased to a dose at 20 pills a week. I was then prescribed weekly interferon injections that I was on for 7 1/2 years, still leading the same demanding physical work life style. Only after 6 years of interferon did my platelets finally drop within "normal" range. The interferon alleviated some of the undesirable side effects of the hydrea, and also presented some more difficult effects of its own. You will eventually accept the roller coaster ride. You don't get very far complaining about it - as we all know that with MPN's people will tell you that you "look fine", so you don't expect pity. This June I was diagnosed that my ET has transitioned to very high risk myleofibrosis, so am switched from interferon to Jakafi. Jakafi comes with a list of unwanted side effects too. They have in just 2 months doubled that prescription as well. I can tell you that this stuff is a nothing burger compared to the interferon. So I take the prescription, if it is intolerable, they will work with me to fit the best alternative. I am now given a prognosis of just months unless I get a stem cell pretty urgently. It has taken 4 months to look forward to my next consultation Dec 1 at Mayo, that is unless I transition to AML in the meantime as well (which I am told is apparently pretty likely and a much quicker ending). I dont think, "oh woe is me" at all. I got 17 years because I accepted the managed care plan and lived for each next day. If I hadn't, maybe not so good to let the disease manage things. So for me, on to the next thing. God bless you all, and may you be blessed with good days and the ability to endure any difficulty ahead.

Buen día, yo tomo hidroxurea hace 9 años, actualmente tengo 40. Realmente no tengo efectos secundarios importantes salvo el cansancio.

Actually when my mother was diagnosed with pancreatic cancer, I researched everything....Her Dr gave her 6 mos or less.....We went to lots of Dr, some were quacks, but we did try an alternative type of Dr, he was 92 years old, and somehow the visit alone helped my mother feel better, he gave her some meds, never charged for meds, doctor visit $60 paid by medicare, we had to monitor her temperature and bring in numbers at every visit. Anyway she died 2 1/2 years later painlessly in her own bed, as she wanted. So who knows, where there isn't anything else, I can understand searching for hope. She did have whipple procedure, but one Dr said there were experimental treatments, but he didn't offer any hope, in fact he told us most patients who tried were sorry. I believe in science when it has an answer, and pray when I need hope

I'm really happy you have never encountered someone who thinks you can outsmart cancer with "alternative" treatments. MANY people have friends and family urging them not to take chemo without any understanding of the disease or meds whatsoever.

And I applaud your attitude. But some days it's harder to maintain than others. When I have a bad day with fatigue and brain fog (like today) I try not to beat myself up for needing to slow down and regroup.

I have come across so many people with cancer. I have yet to meet anyone who thinks they have 'Outsmarted'!! Cancer.
So many cancer sufferers are naturally worried, depressed etc BUT so many are trying to fight the fight to the best of their ability by trying to remain positive, trying to lead their lives as best they can by occupying themselves physically & mentally which is a tremendous help to them. Think about it!

I have been taking the hydroyurea since 2014. I have had 0 side effects from it. Please try it. There are other drugs they can use if you can't take this one. My oncologist put me on a baby asprin, 81 mgs daily in addition to the urea. There is no cure for this, so I guess we just have to manage it the best we can. When I was diagnosed with essential thrombocypenia it was just called a blood disorder. Now it's a blood cancer...

Yeah, I cannot tell you how many people leave their hemo's office having no idea what's wrong with them. Dad was diagnosed about 2004, and his hemo pulled out a medical textbook and began reading aloud from it. Dad didn't hear very well to begin with, so that was a comedy of errors.

I always like "it's a benign cancer" or "it's technically cancer but not really." Those seem to be common explanations that have confused people from Quebec to Bahrain.

I am not sure what's so hard about telling someone they have a rare chronic bone marrow cancer that will probably not affect their lifespan or overall health if they control general stroke risk, take oral platelet reduction therapy, and get monitoring as recommended.

My hematologist from Anthem University of Chicago Medicine did, and still does, a lousy job of explaining ET. At times, my doctor seems clueless regarding ET.