I have been dx with ET. Took Hu for 8 days. Felt horrible , called specialist and came off HU. I am well over 65 and platelet count never over mid 500s and have little symptoms.
I have been researching all of the other drug choices by this great and informed member forum, and all the famous specialist from all over the world the pros and cons of each med. I can’t find a choice on the forum that is safe , curative and effective. Maybe because our MPNs are so rare , we have little choice in meds? I suppose one must pick, or chance a stroke or bleed or look forward to a life of feeling miserable on our drug of choice.
Feeling very despondent over our drug choices that makes you feel worse than the disease and the possible side effects that go with them. Sorry for the vent and sorry for all of us and our med choices. Does anyone have any positive advice to the dilemma I am feeling?
Thanking you in advance for help!
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JAB6
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I totally understand your frustration and concern. I’m now 78, diagnosed ET about a year and a half ago. Took me 5 months to agree to take HU every other day. So far so good. My MPN specialist is ok with my platelets under 600. But I get anxious and angry about this disease with no cure and having to take the drug for life. But then I tell myself, as Hunter says on this wonderful forum, I’m much more likely to die from something else. And stressing only worsens things. It took me a long time to put the ET on the back burner although it’s always there. Maybe a lower dose would be less troublesome.
I guess we all take different paths coping. I’m not real good at it but each day it gets easier. And my dogs make me smile. Good luck to you and keep reaching out. That really helped me. Best. Marti
Hi Marti, I hope I can develop a better attitude like you. My dog has been my best friend through all of this! Loneliness is difficult but when you are depressed it is not easy to reach out to your friends.
I am on hydroxycarbamide 500 daily been on it 2 yrs at first I felt unwell most days this lasted about 8 weeks ,I was 2 weeks from my next appointment when I suddenly felt great and very rarely have a bad day now I am active on a Mediterranean diet lost some weigh and life is good we are all different I hope you find an answer it took this 8weeks for my body to accept it and get use to it
Hi Chilly Ash , Do you stay out of the sun and experience mouth sores? Living in Fl. It is difficult avoiding the sun and mouth sores sound horrible along with the overall flu like symptoms I experienced on HU.
I get mouth sores especially lips but it's getting further apart the bouts I got the flu symptoms for 1st 4-5 month on and off ,as for the sun I use high factor sunscreen and a hat ,I found a mouthwash called corsydol clears my mouth and lips quickly we are all very different so what works for one is not for another when I first took hydroxycarbamide I felt dreadful and thought I would always feel like that but I am ok now but it does not suit everyone you are not negative you are watching your health and what's best for you after all you are the expert in your own life and know how you feel
I am going to ask for a referral to a cardio and vascular Dr. to see if I have any issues at this time. Seems this should be a prerequisite to know how compromised you really are to know what you are dealing with. At this time , I have no idea .
That does not sound negative at all. It is in fact realistic and you made an informed choice.
While most docs would recommend cytorection for ET age > 65, not all do. Some no longer use age alone as a determinant. This is not, however, the standard practice.
The good news is that our options are expanding and improving. There are several very promising treatment options in clinical trials for ET, including bomedemstat and Besremi.
Your experience with HU is not uncommon. "Hydroxyurea is a highly toxic drug with a low therapeutic index." American Society of Health System Pharmacists. While some can tolerate HU and benefit, not everyone can. I am one of those who cannot tolerate HU and it was ineffective for me. I have done much better on the interferons (Pegasys, Besremi). The IFNs have been more effective and much easier to tolerate. Pegasys is well recognized as a viable treatment option for ET, though it is used off label for this purpose.
My experience with the IFNs is that they have improved my quality of life. I feel better now than before I started on the IFNs. I am maintaining a complete hematologic response and have only minimal side effects. My allele burden has dropped from 38% to 9% in only 18 months of treatment on a low dose of IFNs. My only regret is that I waited as long as i did to start on the IFNs.
We are each different in how we respond to the treatment options for MPNs. We each have a unique MPN profile that requires an individualized approach. You are correct that these are rare disorders. Most doctors, including hematologists, have little experience with them. That is why it is so important to consult with a MPN Specialist. Just in case you have not seen the lists, here they are.
A MPN specialist can do the best job of reviewing all of your treatment options. These include Pegasys, Anagrelide, Jakafi, and clinical trial drugs like Besremi and bomedemstat. Using an aspirin-only approach is also an option if you determine that is in your best interests.
While there is no cure yet, ET can be successfully managed. It is a truism that you are more likely to die with ET than from it. i was diagnosed with ET over 30 years ago. it progressed to PV about 10 years ago. Now age 67, i am doing well and living a good life.
Wishing you success in the next stage of your journey.
Hunter as always you gave well researched and excellent advice. Can’t find out when bromedstat is going to be approved but sounds promising. Think IFNs are the way to go but probably very costly. I have the best Medicare plans available but pharmacy part D not so good and won’t qualify for hardship.Any advice on cost?
Bomedemstat is still in clinical trials. There is no ETA that I have heard on when it will be available. When it does become available, I would expect it to be quite expensive, like besremi and Jakafi. The good news is that in 2025 all Medicare part D plans will have a $2,000 annual cap on out-of-pocket expense.
The retail cost of Pegasys is a little above $4,000/month (4 injections). PEG is on most formularies, but is a higher tier medication. I had no problem getting it authorized on my Medicare Part D. plan. My plan has a $100 cap for any one month supply of an authorized medication. I already have a $2,000 annual cap, which I meet every year. You would need to check your plan to see how coverage works. Hopefully it is not one of those awful 80/20 plans. There are some organizations that may be able to help if it is a financial problem. The PAN Foundation has a portal that provides a for a search of resources from multiple organizations. panfoundation.org/
Hunter again thank you so much for this great information! I think I have the bad prescription plan -need to check. Doubt I qualify for financial support , guess I will have to change lifestyles to support drug need. Can’t wait until 2025 when all drugs are capped on Medicare at 2k.
Its a shame some of these drugs aren't available in England, I feel there is very little choice here - HU or Peg. I don't think there is anything else for the forseeable future. I would be interested to know if there is.
Anagrelide is another option. Many people get on fine with Hydroxycarbamide (I did) - lots seems to be afraid of it because it's technically chemotherapy, but it's nothing like the chemo giving for other cancers.
I agree. Hydroxy doesn't affect me too badly - its rubbish for my skin and hair but thats just a vanity thing. Unfortunately it doesn't control my white cell count though. I don't know much about Anagrelide and I've never been offered it.
Anagrelide helps to control platelet but not other blood cell lines. It also is considered a second-line treatment as it tends to have worse side effects than HU or PEG.
Your concern that some of the other treatment options for MPNs are unavailable where you are is understandable. Unfortunately, some of these options are quite a bit more expensive and some healthcare systems are not willing to invest in these options for most patients regardless of efficacy. This speaks to the need for strong advocacy, both individually and collectively.
WIshing you all the best and success in accessing the treatment of your choice.
Oh thank you for clarifying, that would be why I have not been offered anagrelide then, my platlets are normal with hydroxy. I am lucky, I feel fairly good most of the time on it, my WBC just bothers me. It is very annoying that other treatments seem to be available almost everywhere including Scotland but not approved for use in England so no way of getting hold of them - for the time being at least.
Anagrelide can be relatively free from side effects. I was on it for a couple of years on a trial, then again years later, in combination with Hydroxycarbamide. For the first three weeks I had bad headaches and palpitations, but in time, just occasional palpitations. I liked it and generally felt really well. Hydroxycarbamide was fine too, apart from some mouth ulcers. I struggled with Pegasys because of severely aching joints but I persisted as it was doing a good job if controlling WBC.
I just looked at your profile in which you say that your doctor originally suspected Myelofibrosis. If it's now been confirmed that you have ET, that is excellent news! There a various other drugs which can be used, as Hydroxycarbamide didn't suit you. These are best discussed with your haematologist but ideally you should be seeing an MPN specialist as these are rare diseases and general haematologists rarely have the knowledge to deal with them well.
Thank you all for the excellent advice. To answer Otterfield’s question, the hem/onc I was first sent to suspected MF. I changed to Moffitt, Dr. Kuykendall a MPN specialist for BMB and further treatment. First doc was wrong, so relieved it was ET.
I am leaning toward IFN and can’t find out when Bromedestat will be approved. Also noticed on this forum where some specialists are now saying Hu has some therapeutic value. This was very confusing as I thought it only lowered platelets, and in my case made me ill. Patience and trial and error I suppose because everyone is different.
Thank you all for your experience, understanding and great advice. I value everyone willingness to share their knowledge and understanding of how I feel about the downsides of our drug choices. Will see specialist on the 21,June to hopefully get this sorted.
I wish you luck in your choice of medication, it’s not easy. Indeed, it can be overwhelming reading all the side effects, or how others have reacted negatively to certain drugs. It doesn’t mean you will experience the same however.
What side effects did you experience on hydrea? I take hydrea, and it works very well for me, but I do appreciate it’s not suitable for some. Many on the forum do have success with interferon, so you may find this more suitable.
You asked about hydrea having therapeutic value.
‘There is evidence to suggest that hydroxycarbamide reduces the long-term risk of bone marrow scarring or Mylofibrosis (MF).’
You seem to be doing all of the right things, researching, asking questions. Knowledge is power and undoubtedly this will help you to make an informed decision in discussion with your haematologist.
Thank you so very much for your reply and article.
I must be in the 10% your article said is affected by Hu. To answer your question ,I was nauseous, couldn’t eat, flu like symptoms, insomnia and constipation. Day 8 called specialist and let him know i had no symptoms until my quality of life came crashing down taking HU. Nurse told me to discontinue until next appt. Next appt on June 21.
Its not negative , I am exactly in same position due to start a medication which I have put off for 1 year since dx although I chose not to try HU and try Pegasus interferon but I have only few symptoms, itching after shower and some hand tingling when I read all the side effects of all the drugs and it does make me wonder am I going to feel worse taking a drug and its for life not like a short spell then you can recover from feeling rough . I have put it off for so long managing with asprin, fexofenadine and venesections. There is always the thought, too, that I don't want to put myself at risk either,it's so hard
Ivtaje Hydroxy and have done for about 10 years . Maybe give it another go . I don’t think 10 days as long enough to get used to it . There are other choices but Doctors prefer hydroxyl because it’s cheap . I take two a day . I live a fairly normal life for a 74 yr old . I try not to think about the illness ET /PV . No point in worrying . After so long with this illness it’s easy to put it at the back of your mind . I try and do whatever I feel like. I had a venesection a few months ago but it made me feel very faint and Blood pressure dropped very low . I was offered another but declined. Good luck with your journey . This forum is very good .
I'm not a doctor, but it looks like you have a very mild case of ET. Low weekly doses of Pegasys interferon (e.g. 45-65 mcg per week) are usually effective at both lowering the platelet count and slowing or stopping disease progression to post ET myelofibrosis. These low weekly doses usually have minimal and sometimes negligible side effects.
Most Part D prescription drug plans have Pegasys in their formulary which covers most of the cost. An annual ~$10,000 grant from a cancer care foundation can cover the rest (if you make less than an approx $75,000 annual income and are single). Here's a look at how my Mutual of Omaha part D plan pays most of the monthly cost of Pegasys and a PAN foundation grant covers the remaining $228 per month. imagizer.imageshack.com/img...
If you have an annual income above about $75,000 and no Part D insurance you might still be able to afford Pegasys as it would cost you about $1,100 out of pocket per month for four 45 mcg weekly shots using Pegasys purchased in 180 mcg vials. Dr. Komrokji at Moffit has a good reputation about being agreeable to prescribing interferon. moffitt.org/providers/rami-...
Just a thought. the lowest pre filled vial of Peg is 90 in Uk. Would it be cheaper for you to have a dose every 2 weeks? It worked for me. So glad I don’t have to buy it.
You don’t say what your dose is. Maybe you could lower it. I must say we are all different my playlets were in the 800 and I started to feel better when my platelets started to lower. After 6 yrs of rising platelets and meds I started peg interferon. It’s fantastic for me.
Hi. I understand how you are feeling. I stuck with the Hydroxy for 6 months and wish i hadn't. Felt ill most of the time on it and had to change to Interferon because my platelets were going up even on a higher dose. Been on Interferon for a few weeks and feel ok, platelets are coming back down again. To be honest i hadn't realised just how rubbish the Hydroxy was making me feel until i stopped taking it. Good luck with whatever choice you make.
thank you. I believe there wasn’t much option. Peg was a new option and extremely expensive. Now I believe it’s come down enormously in price but still not open to everyone.
I’m 67, in the US, changed from HU to Jakafi bec of extreme itching. It was cheap w private insurance, $2,000 w Medicare. Then after I’m out of the donut hole, $700/month. I can afford it for now.
Dear JAB6, I am 71 and started HU at the end of March this year. My first week was terrible with nausea, extreme fatigue, no appetite, and horrific night mares. Around day 12 the symptoms because Now I only have bone pain , but not every day. It is tolerable with Naproxen used sparingly. I am back to my old self. I can only tell you that the HU symptoms will subside.
You are definitely being realistic and perfectly analytical. The way I see it, you are taking care of yourself!
I’m 58 and have ET, CALR and my goal is, to live well into my 80s as healthy as possible. I have been on Anagrelid for almost 6 years. Since my diagnosis. It bothers my heart, causing palpitations. I found different ways of dealing with that by taking the pills spread throughout the day. Then found that taking acetyl L carnitine 2-4 500mg capsules. kept my palpitations down and gave me energy. I also take coenzyme Q 10, 100 mg daily for energy also.
Nevertheless, the problems got worse and my blood pressure was all over the place, although it was always 100/60-120/70The whole time my brain was also not that clear.
I tried the HU and within two days I had massive neurological symptoms. I stopped it immediately on my own, and raised up the Anagrelide again. It said on the package that if neurological symptoms occur to stop the product immediately. Many people have absolutely no problem with it from what I can gather on this forum. Some have mouth ulcers. I believe it’s because they hold the capsules in their mouth too long. It said in the package that were not supposed to touch them because they are cytostatic. One gave advice to someone who could swallow the capsules to open them, stir the powder into the water and drink it!!! Luckily, the info here is 99% safe and we gently guide each other with care! I deeply believe this forum is a great addition to our therapy and well being 😃
We can only try and see with the meds. I was OK with Anagrelide up to three pills a day, but the fourth gave me very obvious problems, with 5 and 6 I could hardly drag myself around, heart was pounding strong and I could only lie down and try to keep up with the breathing. This means that even two or three also cause some kind of damage, but I’m comfortable in order keep me at 3-4 capsules a day, my hematologist and I tried to keep the thrombosis at 750 max, adjusting the dosage often
my thrombocytes, bounce up and down gladly: a roller coaster. I have had six light TIAs starting at the 600. Point. I finally got my diagnosis seven years late, after my third TIA. my thrombocytes were up to 823 and a few days later they were up to 909, because of the stress caused by the diagnosis. I watch my self like a hawk. Stress is definitely a huge factor.
I finally went to a new MPN specialist and begged to be put on some kind of testing to try some new medication. She immediately gave me Besremi and after some initial symptoms which tapered off has been working beautifully. I am still on a transfer, so my Anagrelid has been reduced to two capsules a day, while slowly increasing the Besremi to 200mcg it is not yet officially approved for ET but it does work, and I feel really well I have been on it since October. initially I was weak the first week but the second week I was fine. I also had joint stiffness and pain , mouth ulcers (very light) and and forgetfulness the first week. The symptoms have become less. Last week I only had 2 days of sensitive knees and that was all! 😉 I’m in Austria and all my MPN specialists patients who are intolerant of the other therapies are on this. We are being monitored closely, in a clinical setting, like a study.
Besremi takes time to work for some, probably because my immune system is very stable due to my excellent diet and supplement care which have helped me rid of a host of other problems that I had with my health most of my life. 👍 For others it’s worked pretty quickly.
I know that there are quite a few other patients that don’t take any medication at all when they only have 600 but to take the daily baby aspirin. The reason why I had to start and stay on the medication was the six TIAs. Some people are prone, and some are not. Some are over 1000 and still don’t take medication just a baby aspirin and they are fine. I have consulted up to 10 doctors at the two hospitals where I was at now I’m at a third and finally have an MPN specialist not just a hemotologist oncologist. Some of the latter don’t even see our illness as a cancer and blow it off as something simple. We have to be educated and aware, and be the CEO of our health. 🙂
Thank you Anag, so very glad the Bes is working for you. Great advice you gave on your trials of settling on the med right for you.
A huge hope and wish of mine is that the medical scientists will discover a better med for ET without all of the horrific side effects each comes with. Since this disease effects the heart and vascular system as well as progression to worse disease in some cases; why , can’t the hem/onc cardio, and vascular physicians work together to develop a med to prevent bleeds and clots through a healthier less toxic path. IMO the tools for MPNs today are quite lacking and I doubt disease is as rare as thought because many physicians don’t understand MPNs so they do not dx it. Hopefully our MPN group can advocate for better drugs with affordable pricing.
I was same very ill on Hydroxy with ET my platelets 580 . Moved to Peg Interferon monthly injections have worked well & glad I tried it despite reading up too much on everything sometimes you have to try & take a chance. I am glad I did . Julia UK 👍
Good Luck Janet they are working on new drugs forvMPNs but think it was ignored for many years because testing technology improved to show this rare disease . Otherwise I guess people just died of strokes or heart attacks. Definitely I wouldn’t have suspected anything wrong with myself but yes hard to accept it all initially. Professor Harrison at Fuys Hospital London is excellent but you have good MPN experts in U S 👍 Julia .
I have been on HU for 5 years now, and the side effects get progressively worse as time goes on. If my platelets were not over the 500's without it, I would quit taking it! That's me, and a testament to the way HU makes me feel, and affects my body in such a negative way. I've been told by a different Dr. that all immunosuppressant drugs cause these types of side effects. It is never ending chemotherapy. So far, without an MPN specialist available, no Dr. has offered an alternative other than Jakafi, and I fear that they would all have the same side effects anyway.
Unfortunately dogs and horses this is the present reality unless cardio and vascular experts can prevent strokes and bleeds in an alternative way than MPN drug toxicity. I am exploring this avenue but it may be an empty path? If I discover promising results, I will certainly share with this great forum.
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