Although I do not write often, I read the posts every day and feel comforted that other people are experiencing and sharing their stories and experiences.
I have ET jak2 positive, diagnosed in 2000. I have been prescribed Hydroxycarbamide and Clopidogrel plus medication to help with side effects from these Meds for the last 21 years. Before diagnosis I struggled with fatigue, headaches, loss of vision, pain in my left side. I am now 58, I read with interest that others are not started on Hydroxycarbamide until age 60.
I do wonder what the long term effects of being on Hydroxycarbamide will result. I have had a few episodes of skin cancer and over the years some stomach problems. I would appreciate hearing from anyone in the MPN community who has been on Hydroxycarbamide long term and any views or not xperiences on taking this drug for so long. Thank you for reading my post.
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Bobthecob
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Like you, I was diagnosed in 2008 with Et Jak 2 positive. I was only 52 and my hematologist immediately put me on hydroxy. I was having really bad headaches for months before and the headaches went away after I started the hydroxy. About 2 year ago, I changed doctors because I had developed anemia and my platelets were increasing steadily. She diagnosed me with MF intermediate 1. She’s not sure when I exactly progressed, but not to confuse you more, at the time I saw her, I had been on Jakafi and anagrelide. She took me off both of these and put me back on hydroxy. My point is that my medications have been adjusted or changed several times over the years and it’s hard to say if the symptoms I feel are caused by my illness or the medications. At the time of my original diagnosis in 2008, I had no other risk factors and, like you, I wish I hadn’t started on hydroxy so soon. I wish you well.
You will hear a variety of responses to the question about long-term use of hydroxycarbamide (hydroxyurea - HU) . Some people tolerate it without apparent trouble. Others do not. I am one of those who did not. I experienced toxicity even at very low doses. The risk/benefit profile was not favorable for me. Others have a different response. Here is a bit of what is in the literature about HU.
The adverse effects you listed, skin cancers and GI side effects are well known adverse effects of HU. The symptoms you listed are well known to be associated with MPNs. The answer to your question really has more to do with the risk/benefit profile for you, based on your MPN profile and how you body reacts to HU.
There are known risks to long-term HU use. Skin/nail hyperpigmentation/atrophy and skin cancers are well known. The increased risk of leukemic progression is also now known. Per some findings it takes use of at of least 10 years for this risk to manifest. This is one of the reasons that PEGylated Interferon is preferred by many docs for younger patients who will be on it for more than 10 years. There is also the fact that HU is teratogenic for both males and females taking it and pregnancy must be avoided. For males, hypogonadism is also a common side effect that is usually (but not always) reversible. This is a significant issue for younger men who might still want to have children. All of those factors in combination are considered when thinking about age and HU.
You have obviously been following the discussions about treatment options for MPNs. The thinking about this has evolved in the time frame in which you have been on HU. Some of the leading MPN experts now favor PEG-IFN for most patients due to the risk/benefit profile for each medication. The thing to understand is that this is not a black-and-white issue. There is judgement involved, individual variance in response, personal preference and risk tolerance involved in the decision.
All of the meds used to treat MPNs have a risk/benefit profile. Not treating the MPN with cytoreduction also has a risk /benefit profile. The real answer is what do you prefer? Which risks do you find more acceptable? What are your treatment goals and which choice will most likely support your goals? It is your preferences that drive the decision about which treatment option will be chosen.
I'm 42 and have been put on HU after 14 years of being on anagrelide. I was told this was due to the possibility if anagrelide causing bone marrow scarring yet my recent BMB didnt show any scarring. Have had some awful side effects on HU that have been dismissed by consultant.The dosage is still being tweaked but I'm feeling tired of being up and down all the time. I was diagnosed ET triple negative in 2007 and put straight onto anagrelide only stopping when I was pregnant. Then after 14 years I was told anagrelide wasnt right for me and as light as I dont want any more babies HU is the way forward. I dont want to go on Peg Interferon due to the side effects of that, depression etc but am still curious as to why after 14 years on 1 meds was I suddenly changed to HU when I have read everywhere it should be prescribed to those age 60.
Hi Bob, can you elaborate on the effects of hydroxycarbamide on your stomach? I ask as my wife has been on hydroxycarbamide for over two years and has had frequent major gi bleeds. Very recently hydroxycarbamide has been stopped , and we are hoping it may have been the cause of the gi bleeds.
Hello there, my stomach problems have ranged from pain in upper stomach when touched (treated with pantoprazole). Lower stomach pain with frequent bouts of loose stools (this led to dehydration and a 3 day stay in hospital), I was taken off Hydroxycarbamide to give my system a rest. Dizziness, severe headaches, numbness in feet and toes led to me being weaned back onto Hydroxycarbamide. I seem to be tolerating it better but feel anxious over skin cancer issues and the longevity of time I have taken it. Hope you and your wife find a solution to GI bleeds. Take care
Hi I’ve been on Hydroxy for the last 21 years, I tolerate it well but recently I’ve had three skin cancers removed from my right side of my face, and one from my right wrist which had to have a skin graft as well. I’ve also just had a small nasal cell cancer removed from my eyebrow. My main problem which I’ve had for the last 15 months is an ulcer under my right heel which is very painful to say the least and one on the back of my left heel. These are dressed by podiatry each week but remain pretty static as far as healing goes, sometimes getting a bit smaller but soon revert back to the original size. Podiatry are pretty convinced that the Hydroxy is at the root of the problem, haemotology are reluctant to switch me off Hydroxy as my bloods are very stable but it’s come to the point now mobility wise we’re I’ve had enough of hobbling about and I am going to demand a change of medication at this months review to see if this will cure my foot ulcers, wish me luck !!
It is good to hear of someone who has been on the drug so long. It sounds as though you are having a rough time with skin cancers and ulcers. I can relate to the skin cancer and so far have not had trouble with leg or foot ulcers. I would be interested to hear how you get on with your change in medication. I have been told by Haematology Department it is a balancing act with the benefits of Hydroxycarbamide against skin problems etc. Good luck to you and I hope you feel some relief soon.
Hope you can sort these out, as Bob says nice to hear someone been on hydroxy for so long. I was initally diagnosed for 15 years lifespan and now hoping this will extend! Kind regards, Jenny.
Hi, I don’t know if it’s any help but I soon go for a consultation in the hope I can go onto pegasys.Apparently my consultant is willing to prescribe more readily now than before.
My reason for changing was that I was feeling so so bad ( I know now that it could be because I was very Vit d deficient)
Hi Bob, I was diagnosed 6 years ago, JAK2 positive ET, and I am certainly not a youngster. Initially commenced with Aspirin and hydroxy but for some unknown reason I just kept falling to the ground. Even happened when we attended a function. My hematologist prescribed Clopydogrel in place of Aspirin and I have been fine, I am able to carry on with totally normal life. I hope you have the same as me but if not perhaps suggest Aspirin instead of the Clopy? Same function to help thin the blood. Wish you well!
hi Bob I was diagnosed in 2000 at age 49, I was on Anegrelide trial for 18 months or so then there were concerns over that so was switched to Hu + aspirin which I have been on ever since between 1000 and 1500mg daily. I have always been pretty fit, running and play golf and go to the gym and had virtually no symptoms other than tiredness. I now get a bit itchy on legs, nothing serious and have had one small sore (ulcer) on lower leg for 12 months which does not bother me at all, so all in all not too badKevin
Sorry to hear the itchiness is picking up. All too common for those of us with MPNs. Likewise the asthenia. We can get that from the MPN or from the meds used to treat.
I would suggest that the ulcer on your leg might be a more serious matter. Vasculitic ulcers are considered a serious adverse effect and can lead to secondary infection or gangrene in some cases. Do note the recommendations re. vaculitic ulcers. These are pretty standard protocol for HU use.
Dermatologic Toxicity
Discontinue hydroxyurea if cutaneous vasculitic toxicity (e.g., vasculitic ulcerations, gangrene) occurs in patients with myeloproliferative disorders; initiate alternative cytoreductive agents as clinically indicated.
Cutaneous Vasculitic Toxicity
Potentially severe cutaneous vasculitic toxicities (e.g., vasculitic ulcerations, gangrene) reported in patients with myeloproliferative disorders; reported most often in patients with a history of, or concomitantly receiving, interferon therapy.
If cutaneous vasculitic ulcerations occur, discontinue hydroxyurea therapy and initiate alternative cytoreductive therapy as indicated.
What is the treatment for hydroxyurea-induced cutaneous ulcer?
Cessation of hydroxyurea therapy is essential for ulcer healing to occur. Together with wound care, this leads to ulcer resolution in a majority of patients. It is typical of hydroxyurea-induced skin ulcers that healing is not seen with wound care alone.
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