Hi everyone, I have learned a lot from lurking here, so I decided to try my hand at a post. I had a bone marrow biopsy in May and was diagnosed with JAK2 positive ET. My platelets, RBC, Hematocrit and Hemoglobin were all elevated during some routine bloodwork last fall with the platelets at 721. Two weeks ago my labs showed platelets were down a bit to 687, Hemoglobin was normal, and Hematocrit was 50. Because of my age (64), my oncologist wanted to start me on 500 mgs of Hydroxyurea a day along with aspirin, but when it comes to the HU, I just can't get there :/ I don't have a lot of symptoms right now, just some fatigue, tingling and neuropathy-like pain in my feet, but the side effects of the HU sound way worse than what I'm feeling now, so I struggle with the treatment protocol. My primary doctor said having an MPN isn't a death sentence, but it sure feels like it when the only treatment is chemotherapy. Right now I feel paralyzed...too scared of the treatment to start it but too scared of the risks if I don't. They increased my aspirin to twice a day and that's been fine, but has anyone else delayed starting or refused the chemo, and if so, what were your results? Thank you all in advance for your input 
Hi, I'm new here and too scared to start HU - MPN Voice
Hi, I'm new here and too scared to start HU
Hi, I was diagnosed with PV almost 6 years ago at the age of 64. I was advised to start hydroxycarbamide and aspirin immediately to avoid having a stroke. I was not offered any alternative treatment and so far have only had occasional small mouthulcers as a side effect. I believe the tiredness I experience is due to PV and advancing years. Keeping out of the sun is a nuisance but hats and sunscreen are very effective! I have wondered about interferon but it also has side effects and I'm not sure it would be agreed here in Wales due its cost and because my bloods are stable on my present medication. Even aspirin has some pretty awful possible side effects described on its information pamphlet. Hope this helps.
I do believe the interferons are available in Wales though the NHS if you prefer to use one. You are correct that it can require an approval process due to the cost. It can be more difficult for people over the age of 60 to access one of the IFNs in some systems. It is often not a problem for younger patients. If you think you would prefer one of the IFNs, suggest you look into it and push for it if you really prefer that option.
Hi and thanks for your reply. I'm in the US and the only other treament option I've heard is Anagralide, but my doctor is really pushing the hydroxyurea. I just struggle with the idea of taking a chemotherapy drug when I don't currently feel bad, but he's telling me I'll experience a thrombotic event if I don't. I just can't put the HU in my mouth though and can only compare the accompanying anxiety to what I suspect someone with an eating disorder might feel if they were told to just eat a sandwich. I've been given a psychiatric referral but am not sure I'll be able to achieve results soon enough to get over the anxiety I have about the HU. I'll figure this out, but it may take more time than my dr's willing to give me. Thanks again for your feedback, and good luck to you with your continued treatment!
Hi. I understand your reluctance to star HU. I have ET and Jak2 and am on 500 mg a day of HU and 75 mg of aspirin a day - since July 2019. o problems with HU. platelets are 535 - have been on that for about six months. Due a blood test next week and seeing haemo at the end of the month. Your aspirin level is a bit high - like you I was reluctant to start HU, but haemo explained the risks of not taking it and family talked me into it. No hair loss, a bit tired but I am 75 so could be age. I keep fairly fit - exercise and walking and try to watch my weight, wear SPF 50 and do not sunbathe. If platelets go down to 450 the HU can be reduced by not taking them at the weekend.Talk it over with your haemo or oncologist but don't worry too much about side effects of HU. I don't know of any way to reduce platelets without it. Good luck Hope you get some help
Hi and thanks for your reply. I think one of my probems was being excluded from the treatment discussion and the doctor just presumed I'd take it and do whatever he said...I asked if I could stop it or lower it if my bloodwork improved, but he said "no, you'll have to take it every day for the rest of your life" and well, after he said that I couldn't hear anything else. It's encouraging to hear from others on here who take it without any problems.
Hi. Like you I was and still am not happy having to take HU for life, but made the decision, with family support to take it. The alternative of possible stroke/thrombosis is scary. I would like to think I can reduce the dose to every other day and will aim for this. It also looks as though the dose relates to weight so will discuss this with haemo at the end of the month. Since being diagnosed I am surprised at how many people have ET/Jak2. Let's hope they can find a cure.
I was first put on Hydroxycarbamide in my early forties, in the days when they still used to prescribe it for younger people. I can honestly say that I felt absolutely fine on it and my blood counts remained good for many years. Occasionally the dose was adjusted and when it was higher I was prone to mouth ulcers if I ate very acidic foods.Some people find that it doesn't suit them but it is a well established treatment for ET and there is no reason to be afraid of trying it.
Hi and thanks for your reply, your experience with HU is encouraging. Sometimes I think my biggest issue is denial more than fear because the diagnosis was just such a surprise. I have an appt in two wks with a new oncologist and am going to try to go in with an open mind, so thanks again!
I mirror what Jennie/ Otterfield says. I was on HU + aspirin for 15 years from the age of 36 (now 68) platelets initially at 1600. The dose was periodically adjusted depending on results. It was only stopped because eventually it wasn't working well enough. In fact I wasn't really aware it was a form of chemo for the first 10 years until suddenly the tablet box was labelled with a warning yellow label - this was a long time ago and MPNs weren't categorised as cancers then so probably easier for patients to deal with psychologically.
I was then on anagrelide with top ups of HU for 7 years. Mouth ulcers were an occasional problem and a feeling of toxicity in last couple of years when dose was high. I wasn't told to drink plenty of water and wonder if that contributed to it. Frankly I was relieved to have such an easy form of chemo compared to those friends were sadly going through with other cancers.
Obviously it doesn't suit everyone but I suspect and this has been mentioned often in this forum that it is only when it does cause problems ( I fully understand this as I had a bad and rare reaction to pegalated interferon) that people naturally turn to the forum and report this here, but the majority are taking it and getting on with their lives. No hassle of keeping something in the fridge and being tiresome when travelling. I say this from having used interferon and now EPO injections.
I would also add that having a DVT a few years ago - years after HU and not caused by it - I wouldn't want to repeat the experience. I would be cautious about natural remedies and listen to your haematologist and oncology pharmacist.
Discuss all the options with your new oncologist/haematologist - thankfully there are now many options with more in the pipeline - but as Hunter says it is not a death sentence and treatable.
Hi, thanks for your reply and encouragement. After reading all this info and others' experiences with the HU, the majority of which have been positive other than the mouth ulcers you mentioned and some fatige, I feel much more informed and know more about what I need to discuss when I meet my new doctor.
It was a shame your doctor didn't take the time to discuss the diagnosis and treatment fully with you. It should be a partnership between patient and doctor and I hope your new one is more understanding. Leaflets for all drugs are scary nowadays for legal reasons, but I hope you take comfort from the many people who have responded with reassurance about using HU. Obviously you are quite rightly tackling the anxiety issue as well and I really hope you can find yourself on a more even keel and know this forum is here for you.
Hello there, I have PV and the only drug offered to me was HYDROXY two x 500 per day except on Sunday when I just have 1 x500 capsule. This has been 7 years now and I take several other pills every day . I have never had any problems taking this drug, all my reading are good so I am very happy with it all. One thing I always do is eat just before or as I take the the Hydroxy because I feel doing this protects just a bit more than having a gippy tummy. My Haemo is always very pleased with my results. That is my experience and I feel safe . Better that the other outcome. Good luck whatever way you decide. Bordeauxgirl.
Hello and welcome to the forum. Glad you decided to post.
ET is most certainly NOT a death sentence. Most people with ET will live a normal lifespan. 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 8 years ago. I have lived a rich life and at age 66 continue to do so.
Chemotherapy is not the only treatment option open to you. There are multiple treatment options to treat ET. Hydroxyurea is only one of the first-line choices. Pegasys (an immune modulating therapy) is the other recognized first-line choice to treat ET. There are also second-line treatment options like Anagrelide and jakafi. In addition, Besremi and Bomedemstat are both in clinical trials for ET (and look promising) if you are interested in those options. mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
The oncologist/hematologist should have already reviewed all of those options with you. Unfortunately , not all docs review all of the options. It is very important to consult with a MPN Specialist when treating ET. MPNs are rare disorders and most hematologists have little experience with them. Here are two lists where you can find docs who can help provide an optimal MPN care plan.
pvreporter.com/mpn-speciali...
There are actually two age-based protocols for determining ET risk - 60 and 65. Some MPN Specialists no longer use an age-based protocol, looking at individual risk factors for each patient. Ultimately you will have to make up your own mind about the risk/benefit of each of your treatment options. This includes an aspirin and monitor plan.
To answer your question, I have used HU on three separate one-year periods since I was was diagnosed with a MPN. the first two times it was tolerable. The last time, after I had progressed to PV, the HU was ineffective and I was unable to tolerate it due to toxicity even at very low dosing. I went with no-cytoreduction phlebotomy-only for a while, but that had side effects too. I opted to start Pegasys about a year ago. It dropped my platelet levels to normal limits in about 8 weeks. It has been much easier to tolerate and much more effective than HU for me. I later switched to Besremi when it was FDA approved.
Note that HU and PEG are both used off-label for ET in the USA, but they are in common use. Suggest you review each of your treatment options with a MPN Specialist before you make a decision. If you educate yourself about your options you can make a decision based on facts not fear. HU and PEG are both viable options. You can also opt to go with aspirin-only if your prefer that risk profile. You can also look into clinical trials if you want to consider that option.
All the best as you move forward.
Hi, thank you for your reply and the links. Unfortunately my oncologist didn't discuss any treatment options with me and had already called in the prescription for HU before I even came in for my appointment, but I never picked it up. I've since gotten a new doctor, but my first appt with them isn't for two more weeks. I like the idea of going to an MPN specialist though, so I really appreciate the list you gave me. I'll also read up on the Jakafi and Pegasys you mentioned as well before my next appt. Right now I'm just taking a low-dose aspirin in the morning and one at night and have been looking into some natural alternatives, and I'm very interested in the clinical trials as well. I tell myself I'm undecided as how to proceed, but then I realize that remaining paralyzed is actually a decision in itself. Thanks again, and best to you as well!
I completely relate to the idea of putting HU onto your body when the warnings all over the label say not to even touch it! I was diagnosed at 67 with E.T. Jak2 positive. I took Hu for two years along with a daily 81 mg. aspirin. I had some negative reactions to Hu and now take an experimental drug called bomedemstat. Hunter mentions it in his above response. I hope to remain on it as it is not chemotherapy, no warnings about not touching it etc. I also don't feel the extreme fatique. The cancer itself causes some fatique, but this has much improved. The worst side effect was "metal mouth", occasion mouth sores. I've passed the first phase of the study and now have a lower dose to keep platelets in the zone. I believe phase 3 studies begin in the near future. Might be worth checking out. On another note, it is quite ok to feel you are on a roller coaster of emotions as you process the news of having an MPN. I still occasionally go through moments I call my "pity party". They only last a few hours and then I focus on doing something I feel good about. But isn't lots of things in life like that really. I am so glad you found this forum, you've found your "peeps" and will learn much and appreciate the wisdom shared. Be kind to yourself, you'll find your way.
Hi and thanks for your reply and encouragement. I'm curious what your negative reactions were while you were on the HU, and if it was difficult to get into a clinical study? You are spot on about it feeling like a roller coaster...the best part of my day is the first few seconds when I wake up before I remember I have this condition, but reading others experiences is a huge help.
While taking HU I had some of the normal reactions like mouth sores which came and went, nothing too bad. But about a year ago I had an increase in debilitating fatigue and I was blooming in skin cancers. I had 5 excisions in about 6 months time.And they keep on coming despite stopping the HU. Now, it is not possible to say for certain these were caused by the HU, but they came on so suddenly and so many I think it is because of HU. I get checked more frequently now. My hairdresser and I noticed my hair thinning. The side effects of HU are quite minimal for many, but for me it was worth trying the study medication. My MPN specialist asked if I wanted to take part in the study. I'm not sure how you'd find out if anyone is participating in the study in your area. Perhaps start by asking where you are treated. They also might know how to access participation. Good luck!
Thanks for sharing your experience and side effects. It seems the mouth sores you mentioned are the most common side effect from what I've read on here along with some fatigue. The hair loss thing, though, that's a real big fear for me because my hair is my thing lol. I'll ask my new dr. about clinical trials when I meet with them, I'm just hoping there are non-chemo options for me when I do make the leap to drug therapy.
I completely understand. I was 64 when diagnosed. It was assumed I'd take hydroxicarbamide. I tried until a few months ago to only use natural remedies under supervision of Ayvedic practitioner and functional Dr. Platelets stayed steady but high over 650.
A couple of times I decided to takemeds but couldn't bring myself to. Even bought sun hat and sun screen last year* which I never used before) . When platelets when over 800.
When they reached over 900 I thought risk was to great. And felt ready.
I decided to try every other day 500 dose. Which I'm still on. This was not recommended by my consultant. But they agreed . So far platelets going down slow and steady .
I still take some natural suppliments .
So glad you have found this forum. Its a source of comfort and support which we really need . AND of course lots of advice .
Carolyn
That's the exact feeling I have, I get my nerve up and decide to try the HU and think I can do it, but then...I just can't, sigh. I've been reading about cucurmin, and I'm curious what natural supplements you tried? I'm hopeful I'll be able to consider medication when the shock of the diagnosis wears off. My primary dr suggested taking it every other day as well, so thanks for your reply and good luck to you!
Curcumin is beneficial. Has to be good quality . I took liquid capsules .I'm having turkey tail mushrooms,powder 3 times day. vit b ,c , fish oil and probitics at present .
Stopped curcumin as now on hydroxicarbamide.
If you can afford it I recommend seeing a professional ... herbalist , ayvedic , etc look into who sounds good in your area ?
What in particular does the consultant feel most concerned about re. Bloods?
Or symptoms?
The oncologist I was seeing wasn't a big talker and had a tunnel-vision focus on just the bloodwork, so that's another reason I switched doctors. He never asked how I felt physically, and when it came to the HU, he called it in before I even had my appt and then just gave me a handout to read about it. Of course, after I got home and read it, I was so scared and freaked out that I couldn't take it. I've got an appt with an acupuncturist/herbalist which I'm hoping will help with the tingling and neuropathy.
I understand how you feel. I’ve been on and off HU for nearly 14 years, since I was 52. I’ve also been on Jakafi which failed me after three years when I developed anemia. I’ve also been on Anagrelide which gave me heart palpitations. When I transitioned to MF three or four years ago, I got a new drug called Fedratinib, which made me extremely drowsy. Hydroxyurea has been the most stable one and the one that works best for me. I take 15 pills a week and a one baby aspirin/ day. My numbers have been stable for the last 2 1/2 years. I wish you luck on your mpn journey.
Many on the forum will be able to relate to your present dilemma. It’s no easy choice; kind of a sense like ‘you’re damned with either decision’.
I faced the same decision as you at diagnosis, ET, (Jak2+) age 60, WHO criteria for cytoreductive therapy.
The haematologist sensed my reluctance to commence treatment. She discussed with me the potential risk of thrombotic events from MPNs, including the disabling effects from strokes. That particular thought really concerned me. I decided to begin hydrea, but psychologically I really struggled with taking that first tablet. After that however, it got a lot easier.
I have been on a low dose of hydrea for six years now. It works very well for me, keeping my platelets at around 340ish, all other blood counts good too. I have had no adverse effects other than the odd mouth ulcer in the very early days. You will hear that it doesn’t suit some, but the majority do tolerate it well.
Reading all the side effects of any medication including interferons is daunting, but it doesn’t mean you’re going to get them. Maybe if you approach this decision with the idea you can stop the medication if it doesn’t suit you may work psychologically. Nobody can force you to do anything you don’t want to. It’s your body, your decision and you are in control.
Your Dr is likely reacting to your HCT result of 50. You may see your CBC result lists this as being in range, mine do. But for MPN patients, this level has much increased risk to thrombotic events. You can find some good discussions on this forum. This generally applies to both ET and PV patients, as there is overlap in various ways. It also is a separate risk from any symptoms.
So you should discuss with Dr in more detail your options for controlling your HCT, but Dr is correct in being concerned. HU worked well for me on all important blood counts, but I have switched to Besremi for its potential long term benefits.
For comparison, the risk for increased platelets is not as clear in the research, although it a normal is part of MPN treatment.
Hi and thanks for your reply. My oncologist has never mentioned the elevated hematocrit, so this is the first I'm hearing that's a concern? He said that the goal of the HU treatment was to get my platelets down to the 400s so now I'm a bit confused, but I'm so glad you mentioned that so I can discuss it at my next appt.
You will benefit from consulting an MPN specialist.
Do you have your actual BMB report? It should have more details on your condition. Your blood counts could be PV, so there must be other info pointing your Dx to ET.
For HCT: Here is one version of the report that shows how critical is it to precisely control HCT, at least in PV, but I believe in MPN in general. See the image, there was 20% odds of bad events over time if your HCT is even slightly over 45. Under 45 HCT it was close to zero odds (For female this limit is usually 43)
mpnconnect.com/polycythemia...
<<Elevated Hct between 45% and 50%: 4-fold higher rate of cardiovascular death and major thrombosis1>>
The same report discusses the importance of WBC levels, but since you didn't mention, it's probably ok.
Hi there. Like may other posters, I know where you’re coming from! I held off drug treatments for a very long time until taking HU became a no brainer. My numbers tumbled and the thing I could hardly put in my mouth is now nothing more than popping a paracetamol.
The thing I’m curious about is that your haematocrit seems quite high at 50. Yet, it appears your haem has said nothing. And the fact that your oncologist wasn’t prepared to have a conversation about treatment options does send up a few red flags. I think if you can, getting to see an MPN specialist would be a smart move.
Your primary care doctor is right, an MPN isn’t a death sentence. But what is key is getting the right diagnosis and the right management which means understanding all the options and all the risks. Wishing you well.
Hi Maximo06 I understand your hesitance fully.
I was diagnosed with PV in 2015 after I had already suffered a stroke. I was in my mid 50s at the time, and opted to be treated with aspirin and venesection. To begin with, this regime worked sufficiently: although having regular venesections every 8 weeks takes its toll. I was constantly anaemic, and my already poor veins didn't fare well. It got to the stage where they couldn't find a decent vein, even with the help of the vascular scan team.
So in 2019 after a lot of anxiety, hesitance and conversation with my Haem I started taking HU - 500mg x 7 days. Thankfully, I tolerate it well with no side effects, and it's normalised my bloods. I now take, 500mg x 4 days and 1000mg x 3 days and haven't needed a venesection since 2019 (touching wood as I type)
No two people are the same when it comes to medication and their side effects. When I was first diagnosed I was given Clopidogrel (an antiplatelet) instead of aspirin and the side effects for me were horrendous where others tolerate it well.
All the best and I hope you have a satisfactory outcome after speaking to your Dr.
Hi and a huge welcome. Scary isn’t it. Down right scary and there is nothing we can do about it. Well there is actually,
We have the unfortunate choice, treatment or no treatment? I couldn’t wait to to Hydroxicarbomide. I sat waiting for the prescription and as soon as it was in my hand I took the prescribed dose
REASON
stroke or no stroke?? Having suffered one at the age of 50 I didn’t want another.
Statistics of strokes
1/3 die
1/3 survive with major physical disability
1/3 recover. I’m the latter.
I actually started to feel better once the medication kicked in.
So go on give it a try xx
Hi, thanks for your reply and encouragement. I had a sister who died of a stroke when she was 65. She was also a heavy smoker, which I'm not, but I suspect this family history is enough to warrant a reconsideration of the HU. I'm glad it helped you and you were able to take it without any problems, I'll try to keep an open mind at my next appt.
Hi Maximo, I’m in the same position and to have a bone marrow biopsy on Monday and thereafter Hydroxycarbamide treatment. I’m older, I’m 78 but don’t feel too bad, but worried about the side effects of the drugs. Everyone in the forum have been so supportive, so I suppose we need to try it. Best wishes and thanks to everyone x
Hi, thanks for your reply. I think I'm still dealing with the shock and accompanying denial of it all and that's affecting my ability to see the treatment options clearly. The words cancer and chemo are so scary, and the idea of taking HU is so daunting. Everyone here is so encouraging though, and their experiences with HU don't sound as bad as what I've made it out to be in my mind. I've been sitting on my BMB results for over a month now so I know I have to make a move soon. Good luck with your biopsy, and I'd love to hear how you do on the HU!
It is scary, especially if you’ve been Googling! I was on hydroxy for 3 years then changed to Anagrelide. I was diagnosed at 57, I’m 69 now. Before the pandemic I met a lady in clinic who was in her 80’s and had been on hydroxy without any problems for over 20 years! I think they push hydroxy first as it’s a bit cheaper than Anagrelide. Both can have side effects but that doesn’t mean you’ll develop them. ET is life long not life limiting. Your doctor will monitor you, and taking hydroxy is better than having a stroke.
Re Hydroxycarbamide vs Anagrelide: there was a trial in the early part of the century comparing the two for ET treatment. The trial was stopped early because it was found that Anagrelide was less effective at preventing blood clots.That's perhaps why Hydroxycarbamide is offered first.
I know this because I was on the trial and doing really well on Anagrelide.
Hi and welcome to the site -it’s been very helpful for me.
By now I think you will have picked up from the various and varied replies that ET , and specifically it’s treatment , does vary hugely from patient to patient and tailoring the treatment is possible and advisable.
For me I was diagnosed and put on Hydroxycarbamide c 2 years ago after a clot which itself resulted in the Et diagnosis.
Had I been told - as I think we all would have been several years ago - that I had a “ blood disorder “ and given tablets I’d have thought little of it.
Now , however , Et is classed as a form of cancer. That is a good thing imho as it has benefits in how it is treated and for insurance purposes for certain types of policies.
The downside , perhaps , is that the use of the word cancer is alarming - at least initially - and the treatments - because they involve interfering with the bodies production of cells - is classed as chemotherapy.
Those words still have a “stigma” attaching to them. It’s one of the reasons I tell very few people about my condition. Most peoples reaction is , with the best will in the world on their part , usually negative and a bit “tea and sympathy”.
I take 9 Hydroxycarbamide tablets a week and aspirin everyday. My bloods are taken every three months or so. I’ve been given various tests and checks I wouldn’t otherwise have gotten. All - thankfully - are clear.
I have had - so far - no side effects other then , perhaps , a frozen shoulder linked to magnesium deficiency caused by the Hydroxycarbamide.
I have been very lucky but , as the other posts demonstrate , I am not alone in that.
In summary, try not to be alarmed by the “tags “ this condition and its treatment are given.
It’s possible the stress and worry over this may do you more harm than the treatments would!
Imho - the risks of a thrombotic event MAY outweigh the risks of hydroxy and its side effects. In my case they certainly do but it will need monitoring.
Other than anything mentioned above I live a normal life and expect to continue to do so.
Good luck !
Hi I can sympathise with your hesitation and worries. For reassurance I have been on HU since August last year with very little problems at all. So far all seems to be going ok and bloods fine but its monitored every three months now. Platelets now down to 340 from 550. Just been a steady decrease. Some of the symptoms still exist in a more minor way than they did before diagnosis and treatment, but that's ET. Hope this helps.
I understand your reluctance. I was diagnosed with PV 15 years ago and have been on venesections and aspirin. Occasionally iron tablets to make me feel better as haemaglobin was lower than should be, but then venesections to get iron down, but leave haemaglobin at a reasonable level. If I understand it from this forum the protocol is to be offered HU from age 60. I'm 66 and it's never been mentioned and I haven't pushed it for the same reason and concerns you have. I'm also in Wales. Take care.
All the other answers are really helpful but I sense the reluctance to start hu is because you feel fine at the moment. Bear in mind the same is said by people diagnosed with high blood pressure or diabetes. We know that they are silent killers and take medication because otherwise we might get strokes, heart attacks, blindness etc.
Hi, thanks for your reply, and you are right...I struggle with the idea of having chemotherapy because I do feel fine. Your silent killer analogy is spot on though, and I know I have to get off the fence eventually because staying undecided is a decision in itself.
Hello Maximo - As the others have all said welcome to our unique club. Many of the people on here have so much knowledge and can help you in many ways. However, I will just tell you of my experience. I had had raised platelets for about three years before my diagnosis - my GP knew about this but did nothing. I also had migraine headaches which can be a symptom. Then in 2019 to developed a large clot in my leg out of the blue and from then on I had three clots in my lungs. Only after all this did my GP decide I should see a haematologist. Long story short he then forgot to send a request and eventually I was seen nine months later. The haematologist told me very bluntly that I had blood cancer (ET/PV). She handed me a booklet and told me not to eat meat or fortified cereals. She gave me the prescription for hydroxycarbamide and she said would review me. Two days later I received an appointment for a phlebotomy which was a bit of a shock as this was never mentioned to me. I feel the way I was told was very poor and I was just given the booklet to read.
I started on hydroxycarbamide and like you I hated the idea of swallowing it every day. However, after a few months my bloods were all down to normal and I am still on 500 mg. daily. I suffer severe tiredness and insomnia and foot neuropathy but apart from this (I am 80) I am OK. I think you need to think of the alternative to not treating your condition. I was lucky in that I had four blood clots - any of which could have killed me or I could have had a stroke. I am on life-long blood thinners as well as the hydroxy.
Why not start the capsules and as someone here has said you can then find out all the info to decide of what you really want to do. In the meantime you will be covered from the point of view of strokes, etc. I have spent the last year hating taking the chemo but recently decided it was my friend rather than the enemy and it does not seem so bad.
I do feel for you. It is a shock but as you gain more information it will not seem so bad.
Sorry to jump in and slightly change the subject but do you have any idea why your haematologist told you not to eat meat or fortified cereals? That is unusual advice.
Hi Otterfield - I don't mind you jumping in at all. Any help is much appreciated. I understood she meant no red meal and no cereals fortified with iron. etc. I did not realise this was unusual advice. At a recent visit I checked about cereals containing raisins which do have iron. He said it was not plant based iron I was to avoid but iron coming from red meat.Do let me know what you think? I really got very little advice or explanation of my condition - just the MPN booklet to read. With thanks
Well I went as far as signing all the papers to add hydroxy into my treatment with my current pegysus and then backed out at the last minute when my consultant was doing the prescription. My consultant must think I am a right one ! but as soon as I read instructions about washing your hands et cetera after touching the pill I simply knew I couldn’t put it down my throat. We all have our different fears. Remained on only peg and now figures are coming down nicely. There are other choices to you out there and the consultant should have discussed them all with you. I was offered hydroxy at first but said no as I already knew about peg and they were quite happy to give it to me. I am sure hydroxy works for a lot of people but it scared the life out of me so I tried the other option which luckily works for me with hardly any side-effects forwhich I am very grateful. It’s worth looking into all the options and good luck with your next meeting
Yes, exactly this! I was never able to put the hydroxy in my mouth after I read about what to do if any spilled and how to properly dispose of it and to not touch anything...plus my hair is my thing lol. Thanks for your reply, and I'm going to read up on the pegysus before my next appt.
Hi. Like others here, I completely understand where you are coming from. It is all such a shock when you first find out. I also have PV and initially I was told that it wasn't a cancer and that all I would need was to have some blood taken every now and again throughout my life. A few weeks later, suddenly they decided I needed a daily aspirin and I remember being quite upset about that and fearful about long term side effects. Just as I was getting used to that, again out of the blue, they decided I needed to go on Hydroxy. My blood levels hadn't changed but new research had pointed to people with higher WBC being more at risk of blood clots. It was terrifying sitting in the consulting room and being asked to sign a chemotherapy disclaimer. I cried buckets. But at the end of the day I think I was far more scared (and still am) of having a stroke than I was of the tablets. I still don't like taking them - I try hard not to think about it when I do. I know lots of people take them at night. However, I prefer to take them first thing in the morning and get it out of the way. I then have my breakfast straight after, I think of it as cleansing through my system and putting a protective layer of food on top of the tablets. As you can see, everyone has their own methods and you will find yours, I'm sure. I've been on Hydroxy for about 3 years (again that's something i try not to think about so I don't know the exact time). I have not suffered from any side effects listed so far. I still don't like taking them, and I wish I didn't have to, but a stroke or blood clot would be a horrible thing to happen and that is what I want to avoid the most. I wish you the best of luck - let us know how you get on. All the best.
Hi Maximo06,I too was reluctant to start treatment as asymptomatic with platelets of only just over 400 managed on Aspirin and regular blood checks. . Hitting 60 was the only factor in commencing so I was conflicted. Lots of reassuring talks and advice from clinical nurse specialist, family and reading as much as I could prior to agreeing to start in the lowest dose increasing very gradually, now on 500mg OD Hydroxycarbomide. I had/have no unwanted side effects.
When I sustained a complex fracture to ankle that required surgery and a long period of rehab I was glad not to be overly concerned about a thrombotic event as my treatment had already commenced and ET was managed.
My rationale was not to wait until I had an issue/problem but to look at long term management to minimise risk.
All the best with your decision making.
Hi Maximo,I totally get your fear, I was put on 1000mg ofHU daily at the age of 40, with a diagnosis of primary MF but no outward symptoms…I was terrified at the thought of having to take chemo pills, but more scared of the likelihood of stroke or heart attack if I didn’t ! I am now 58 , been on it for 18 years…I have had more exhaustion, thinning hair and very dry skin, but otherwise fine and it is still keeping my platelets down. I have considered asking about less toxic forms of treatment, but they all have their downsides and side effects. Good luck in whatever you choose to do.
Maximo - as so many of have already said - we definitely understand how you are feeling. After receiving my official diagnosis, post BMB, I was kept on the aspirin and monitor regime, which suited me fine. My MPN specialist did lay out the various medicines available, if they were needed one day, or at 65 (he had recently decided to start patients at 65 on cytoreduction if they had no other history/risk factors (as opposed to 60). Unfortunately my platelets shot up, had some bleeding and we opted to start HU. I was not too keen on starting on hydroxyurea as I, at 51, thought I would need to be on it for 30 or 40 years if I was lucky and I did not like what I read about potential long-term effects.
In the end, it came down to my own quality of life goals (which are supreme for me) and the potential negative impact a thrombotic event could cause - I looked at the HU, even with its black box warning, as helping to avoid a potentially worse outcome. This was hard as you go one day from everything is fine; to what? I have a blood cancer? to ok aspirin and monitor not bad to I have to start chemo..it can be a lot to take in...but the flip side is that we now have options available to make sure we die with ET and not from it - thinking along these lines helped. Also my wife, who had a very intensive, toxic and almost life-threatening experience with heavy-duty chemo to fight breast cancer helped put it into perspective as well - yes no one likes to have to take medicine but for the vast vast majority of people the benefits far outweigh the potential risks. For most people HU works and works well.
Good you changed doctors. The fact they would prescribe you a treatment without discussing why or your options would not sit well with me. Most likely they were reacting to your numbers and HU is considered a first line (although off-label) treatment for ET..but so is Pegasys (interferon). I started on HU, did not tolerate it well once the dose got higher and switched to Peg (which had been my first choice given its potential for a small subset of patients to achieve a molecular response).
I am glad we have options these days. The important thing is to come up with a plan of treatment with which you are comfortable and minimizes any potential negative complications from the disease. An MPN specialist is key in this journey. I did not know that at the time, but was fortunate that my GP referred me to a hematologist in the oncology department at a leading hospital who then referred me to an MPN specialist!
I have learned a couple of major lessons so far in my personal MPN journey: 1) an MPN specialist is key; 2) knowledgeable, assertive (and some times aggressive) patients receive better care and have their concerns better addressed; 3) only you can decide your hierarchy of quality of life; treatment; longevity etc.; 4) this disease is as individual as we are - and while there are some very good (and getting better everyday) guidelines out there - much of what we still do on an individual basis is somewhat trial and error (finding the right combo of medicines/treatments at the right dose/timing etc; so patience is more than a virtue it is a necessity and 5) this community is full of knowledgeable, resourceful and helpful people who are here for each other and understand what I am going through.
HTH - Good luck!
Hi reading about you is very similar to me over 6 years ago. I was 63 and diagnosed with ET and JAK 2 with platelets in the high 500s. I was advised to start hydroxycarbamide and aspirin especially and both my parents had strokes I know how devastating a stroke is so I started on hydroxycarbamide and aspirin. I remember been very scared the first time I had to take it but I have been fine on it. I started with 7 a week sometimes they increase it if my platelets rise as they want to keep them below 400. My last count they were 360. I get my bloods done about every 8 to 10 weeks. I get my bloods done on a Monday or Tuesday and on the Thursday I get a phone call with all my results, and once a year I go to the hospital and see the consultant. I find it works very well. If I did have any problems I can just email my haematology clinical nurse specialist. I will be 70 later this year and I live in England and I have done very well on hydroxycarbamide and would not want to change it as it works very well for me
Hi, thanks for your reply. It's encouraging to hear so many take the HU without too many side effects. My sister died from a stroke at 65, although she was a heavy smoker, so that family history worries me. Have they ever offered to reduce your HU to every other day? My primary dr said that might be an option for me, so I'm going to discuss that with the new oncologist. Sounds like you've found a good routine and great doctors, so I'm hopeful my new doctor and I will click better.
You’re getting a lot of great information here — and I think seeing what’s possible. There are treatment options, and you can land on one if another doesn’t work. Going back to your original post, that HCT at 50 should be of concern to your hematologist. It might be higher by now, which increases the risk of a thrombotic event, especially after age 60. While you’re deciding about treatment, you might want to have a phlebotomy or two to bring that HCT down. This is a pretty easy way to manage the risk while you consider options. In the meantime, stay hydrated. Best of luck to you. It’s definitely scary to start any of these medications, since all have various side effects.
Hi, thanks for your reply. You and a few others have mentioned my hematocrit number now, but my oncologist has never said anything about it? He said the goal of the hydroxyurea treatment was just to get my platelets below 400, but I've got an appt with a new oncologist in 2 wks so I'll bring the hematocrit up with them...sounds like I've got a lot to learn.
Hello Maximo: I got diagnosed in January of this year and managed to make myself a total anxiety case--couldn't sleep or eat or even function. Just like you I thought wow--if I have to wear gloves to take these, what will they do to my mouth and esophagus etc. My hematologist immediately wanted to put me on HU but I told him I wanted to wait until I talked to the MPN expert at Stanford. So I waited about three months, weighing the anxiety of every day thinking I was going to have a stroke. The MPN expert talked me through everything and told me I could take 500 mg every other day. I'm 77 and my platelets were 782 at the highest. Two weeks ago they were down to 642 and I have another CBC on Tuesday. At that point I'd only taken 16 pills. So far I feel fine--I hike every day with my dogs and garden. My anxiety has dissipated completely--the Xanax bottle is unopened. Whew. Am sleeping really well. The anxiety can kill us too!!! Also my Stanford MPN told me if I got my levels down below 600 I'd be ok. I take the pill in a giant tablespoon of yogurt and it slides right down-- friend on another forum told me that trick. Sorry this is so disjointed--wanted to get everything in. I was totally terrorized when first diagnosed--and now I feel so much better and don't think every twinge is a blood clot. Good luck on your journey.
Hi and thanks for your reply. Your past anxiety and reaction to your diagnosis is so similar to mine...right now I can't eat, can't sleep, am afraid to drive because I'm sure I'll have a heart attack and hurt someone in an accident, trying to find a new home for my cat so he won't starve if I die in my sleep, getting all my affairs in order, just basically spiraling every day and paralyzed by fear. I got a prescription for some valium so am picking that up today, and maybe that will help. I know I have to figure it out or my indecisiveness will end up making the decision for me. I feel more informed for my next appt after reading these replies, and I appreciate hearing about your positive experience with the treatment!
Oh my goodness you are ringing some bells in my head. I simply had to tell myself that nothing has changed since before I was diagnosed when everything was fine so waiting a bit longer is no different. Hang on in there x
Hi, thanks for your reply and encouragement...that's my daily mantra too, I keep telling myself I'm still the same person I was before I knew my diagnosis! I told my primary doctor the only thing that alleviates my anxiety over the situation is to tell myself I don't have to take the HU. I've been stuck in this limbo now since May though, and am starting to get scared of not treating my ET. My platelets were 687 a couple weeks ago, so I tell myself I'm to try and ride it out until they get closer to 1,000...just so much to think about.
I started peg when my platelets hit the 800’s. Red blood cells started to go up too so they said it was changing to pv. I am now back to et having been on peg for a year. The thought of starting treatment was much worse than actually doing it which came as a relief in the end, especially when starting peg on a small dose of 45 I didn’t even know I had taken it as no side effects whatsoever. You can always talk through with your haemo about starting off on low dose if you decide on treatment to let your body get used to it gently
I am so sad to read this and it seems (not that I'm qualified!) that your real problem is the anxiety. I would urge you to see a counsellor if you are not already. I promise you that ET, although classified as a cancer since2008, really is cancer with a small c. Hydroxycarbamide is a very long established drug for the treatment of ET and has been used safely on many people for many years (I think since the 1980s, but I may be wrong).
Also, if you start taking it you are not committed to continuing it.
There are other options such as Peginterferon, but that's not without possible side effects.
Discuss all the options with your medical team but please tackle your anxiety. When my sister had breast cancer, she saw a psychologist for anxiety and the psychologist told her that she had seen far more lives ruined by fear than by cancer.
Good luck.
Hi, thanks for your reply and encouragement. Yes, the anxiety surrounding my diagnosis is totally debilitating. My primary doctor gave me a referral for counseling, so I hope that a lifetime of untreated anxiety and depression won't be too hard to resolve in time for me to address the fears surrounding this disease and its treatment. I wish our Western approach to illness was more wholistic and that these oncologists had less tunnel vision, but hopefully I'll click better with my new doctor. Thanks for sharing your sister's experience, and I think her psychologist's comment is absolutely true!
Have you been getting regular phlebotomies? I was diagnosed with PV seven years ago at the age of 71. I first got a monthly CBC, followed by phlebotomy if HCT was over 45. This controlled HCT quite well but platelets stayed high. In a few months my hematologist prescribed 500 mg of HU every day; this worked for a while, but when it failed to do so, HU was raised to 750 mg and finally 1000 mg. This caused serious skin reactions, so I'm now down to 500 mg of HU MWF. Platelets are high but stable; phlebotomy (every 6 weeks, if needed) keeps HCT under 45. I'm starting to become aware of some other PV symptoms (night sweats, cold hands and feet, some numbness in toes)
Hi, and thanks for your reply. I see a lot about phlebotomy and venisections in this forum but I'm not sure that's an option here? I've asked about blood letting (I wasn't sure what it was called) and my primary doctor said that was only done in emergencies. I've read there's a procedure called apheresis where your blood is taken and a machine removes the platelets and then your blood is reintroduced...is that the same thing as phlebotomy I wonder?
Therapeutic phlebotomy (AKA Venesection) is used to control erythrocytosis in PV. The intent is to induce chronic iron deficiency, depriving the body of the iron needed to make Red Blood Cells. Phlebotomy is not used to treat ET. In fact, phlebotomy can increase thrombocytosis. Platelet apheresis is used for emergency platelet reduction but not for routine management of ET. When cytoreduction is indicated one of the medication options is used.
Thank you so much for clarifying these procedures! I kept wondering why none of the doctors I've talked to ever mentioned them, and now I get it. It must have been the platelet apheresis my primary was talking about then only for emergencies. When it comes to taking the HU, I just can't get there yet but I feel way more informed now for when I meet with my new oncologist.
As Hunter notes here, your Dr proposes to get your erythrocytosis controlled. This will be indicated when your HCT is no longer over 45. The Phleb can do that too, but HU will usually control both your HCT and your PLT. Since it appears you need to control both of these, Dr's suggestion makes sense to me. HU can usually get your HCT corrected fairly fast.
Hi,
I thought Maybe my experience would help you.
I was diagnosed with ET Jak2 positive about 7 years ago at age 67.
I refused Hydrea after reading the warning labels. I had no symptoms.
Just took 1 baby aspirin per day. My platelets steadily increased from
500 to 850. Still I felt fine and refused the Hydrea. About a year ago
I saw an MPN specialist, he said I had PV. He recommended starting
phlebotomy and Hydrea. After consulting with another MPN specialist,
I agreed to phlebotomy. Finally this Dr convinced me. I initailly did
3 pill per week, then 5 per week. And now for the last 9 months
1 pill (500) daily. It wasn't until I took it daily that my counts were controlled. Really I don't even know I'm taking it, except that my
bllodwork is normal. There is really no harm in trying it, you
can always stop.
USA, 85, ET, HU and aspirin for five years, fatigue (from anemia), and now four months into recovery from a nasty ankle ulcer, and the latter is my caution. Turns out that a very small % of HU users develop such, or similar, after five years. Also turns out that 1000 mg/dy seems to be the trigger point. I'm just above that on a weekly basis. This side effect was never mentioned by my doctor, who was always laser focused on bringing my platelet count (700-800 currently) down to 400. From what I'm reading, the cure for my ankle is to stop HU. I can't do that right now for a number of nonmedical reasons, but treatment by a Wound Doctor is now showing rapid improvement. At any rate, I thought I'd pass this along so you can discuss it with your Hemo if you so chose. Wish you well!
Hi, I have been on Hydroxycarbamide and aspirin for approx six years and just feel lucky that we can be treated with a low dose of a chemo tablet, Hydroxycarbamide (9 x500mg a week for me). I think of friends who are having to endure other forms of chemotherapy. I say, just go for it and good luck, it works for me.
I was very reluctant to start any medication and my oncologist allowed me to be on baby aspirin only since I was fairly asymptomatic. When my platelets got in the 900,000s I decided to go on the hydroxyurea and requested that I do it every other day. My oncologist would have preferred that I take it daily, but he agreed that I could try. My platelets came down within the 500,000s and we were both pleased with the results. For me quality of life is more important than the exact platelet count. I later moved to one hydroxyurea every three days. I was on hydroxyurea for over two years before I started to have side effects.I am now considering interferon. I was absolutely fine on hydroxyurea until perhaps four months ago.
Perhaps you could discuss the lower dosage of every other day with your doctor. You could then see if that is enough to start to bring your platelets down.
I wish you the very best in your journey. This forum is such a wonderful place to be and I have learned so very much.
Oh… I was diagnosed when I was 60 years old and I am now 71 and until recently very very active. I am still active, but look forward to being less tired hopefully with a new medication.
Wishing you the very very best.
I just turned 60, I am reluctant to start HU too. I started taking 81mg aspirin right away. I know the doctor will turn up the heat the older I get, he's been waiting for my birthday..and the recommendation for my age group. I was diagnosed 2 years ago, I am jak2 positive, I have not been offered a BMB yet and they tried to just send out the prescription for HU to me 2 yrs ago w/out talking to me first. I refused it. My jak2 level was 16 at that time. Then that Dr retired, I see a new one in their place.(not MPN specialists) and now they are having me see the Nurse Practitioner. I need to ask for a new work up and see what the jak2 level is now. It does turn out my transferrin iron was very low, they say if I correct my iron it could bring my platelets down, which did come down from 930 too 750 in 4 months over the winter. I will have a re-check at the end of July. So this is where I am. Also my platelets actually went up after I started 81 mg aspirin 2 years ago. I have some serious tinnitus going on too. I hope this helps you some how too. I do appreciate hearing everyone's experiences on here. L.B. in the U.S.A.
Hi deanlaura.
Given your profile you do have more than one choice for cytoreduction. Pegasys is the other first-line option for treating ET when cytoreduction is indicated. In addition, anagrelide is a second-line treatment option. So is Jakafi, but it is harder to access. Besremi and bomedemstat are both in clinical trials for ET if you are interested. Also note that some docs now use 65 as the high-risk indicator based on age. Some docs do not use age at all, instead look at each patient profile.
You have made a very good decision by insisting on a new workup before you make a decision. Suggest that you also consult with a MPN Specialist since you are not already seeing one. this is essential to ensure an optimal MPN care plan.
All the best.
Thank you so much for so much encouragement ~ I had read about the next age to consider is 65 and as you say patient profile is what is best to go by. I will check for a specialist too. Thank you so much !
My MPN Specialist told me "65 is the new 35." I have PV (with erythrocytosis and thrombocytosis). My doc was fine with phlebotomy -only based on my profile. The iron deficiency symptoms were worse than the PV symptoms so I decided to start on Pegasys and the doc concurred. I found PEG far easier to tolerate than HU and more effective too. can't say what would be best for you. You will need to decide that in consultation with a MPN Specialist.
All the best
I like the 65 is the new 35 ~ I will work on finding a MPN Specialist. I also really need to chart all my health issues (some other diagnoses/symptoms) put it all on one page to see my "big picture", and share it w/the GP and Specialists. Thank you ~ take care
That is a very good idea to have a written list of medical issues and also medications/supplements you take. I also include a list of past reaction to medications where I had side effects. I also go to every appointment with a written agenda.
Treatment goals: Define for your doctor what your priorities are. Can be very specific at times.
Treatment Approach: Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers all the interventions you use
Updates/Issues/Questions
Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment
Treatment
Review all treatment options – let the doc know what you are doing now and seek input on what else to do next. Ask about ALL options, not just the one the doc recommends. Ask the doc to explain why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your own risk tolerance and what risks you prefer to take.
All the best.
Thank you for posting the outline of what to ask for/keep up with. We have to be our own advocate. I was my Mother's advocate, took care of her the last 4 years of her life. I had her details memorized and kept up with everything ☆
Hi there, from personal experience I would say no to Hydroxyurea but that's because I had a negative reaction after 7 months on it. In addition, my platelets only decreased marginally. That said many tolerate it quite well for many years and get good results. I consider myself pretty unlucky.
Like any medication you can only try and see how you go.
Due to your age and JAK2 mutation some form of therapy is required whether it is hydroxyurea or interferon.
I am in Australia and the recommendation here for those 60 plus with no history of thrombosis and are JAK2 negative is aspirin only. I am triple negative so am still deciding whether to try interferon or not pursue therapy at this time.
I wish you all the best.
So sorry to hear how you are feeling. If its a little help I am also 64 years old. Started HU 4 years ago and am delighted to say, going on well. I really feel for you as the doctors have to advise you about possible side effects. However many of us find the medication suits you and doe sits great job of bringing down your platelets nicely.
Please feel welcome to ask anything. I just have slight gastric effects in that the bowels are a bit looser daily but otherwise all going in well.
It is really frightening to start with but now i look upon the meds as a great help and the team are excellent checking bloods every 16 weeks.
😀
Hi, and thanks for your reply and encouragment. The majority of the replies I've received are of positive experiences with the HU, so I'm going to try to keep an open mind when I meet with my new oncologist. My current doctor didn't discuss anything regarding treatment, and when I showed up for my appt, he'd already phoned in the HU prescription and gave me a handout to read about it and sent me on my way. I got home, read it, and just bawled. His approach was just a real turn off for me, so I'm hopeful I'll get on better with my new doctor.
yes worth a try and we are all here to support you. Its a great forum, we all share our troubles and triumphs. Its the emotional aspects which are in need of much care and attention as its really frightening at first and getting used to thinking I have a blood cancer, but it can be very well managed.😀
Hi Maximo06
I have been on hydroxy for almost 20 years for ET
Only side effect that was a problem for me was my eyebrows becoming very sparse
Now have MF so on a different drug.
It’s scarier risking a stroke or blood clots
Wow 20 years, that's encouraging! Thanks for your reply, I know I have to do something about this eventually as my sister died from a stroke at my age. She was a heavy smoker, which I'm not, but the family history still scares me. What dosage do you take, and has it changed over the years?
Hi Maximo,
I understand your concern but I was started on Hydroxy 2 years ago when I was 68 (I have PV). I started with 500mg per day (capsules, not tablets) but this didn't do enough so it was increased to 500mg/1gm alternate days and now I take 1gm 5 days/wk and 500mg the other 2. I had already been put on daily low dose aspirin when PV was first suspected - I take this at lunchtime due to potential conflict with reflux medication but no apparent side effects from this.
The only side effect I had from the hydroxy was slight nausea for about an hour after taking it which then passed. This stopped after about the first week or so and I never get that reaction now. I take it in the morning with my breakfast but I believe some people take it last thing in the evening. The doctors have never advised on when to take it and the information leaflet doesn't say anything either but there may be other information on this on the internet. It appears to do the job in keeping my blood counts within the right ranges most of the time and of course the main one that is monitored is haematocrit. I've never had any issue with mouth ulcers but this may be due to it being in capsules which I can swallow easily.
As others have said you do have to be more careful in sunlight and use at least SPF50/5 star Ultra UVA protection suncream and wear a hat. Don't assume that if you're in shade on a sunny day you don't need to use suncream, the sunlight can be reflected especially near water. I also understand from this forum that depending on your gender, unprotected sex may need to be avoided as the hydroxy can be present in some body fluids which could be passed to the other person and affect their blood counts adversely.
I really don't think there's a need to be worried but I wish you well with your decision. We can all react differently and a lot of this seems to be down to 'try it and see ...'.
Paul
Don't be scared, it's not that bad and it will make you feel better. I've been on hydroxcarbonide 8 years and I have minimal side effects . It's scary at first, it took me awhile to take the first pill, don't worry it will help you and stop you having a heart attack or stroke. Enjoy life.
Hi, I was diagnosed with PV JAK2 18 years ago and am now 61. I was considered low risk meaning I was under 60 did not have a history of clots/strokes. At 60 I tried Pegasys at the lowest dose of 45mcg but had very elevated ALT (liver enzymes) so tried cutting that dose in half to 22.5mcg which stabilized the liver enzymes but still gave me brain fog and slight depression. It barely lowered my platelets. My MPN specialist recommended that I take two aspirin a day and get phlebotomies as needed which is what I'm currently doing. I refused to go on the toxic drug HU because of the skin cancers it can cause. I have a history of skin cancer for myself and my dad died of skin cancer. We are all different so you have to figure out what will work for you. Good luck! Kerry
Hi, and thanks for your reply. You're the first person I've encountered who is also taking two aspirin a day...do you mind if I ask how well you tolerate that and what your platelets were when you started? I don't have a history of skin cancer, but I love being out in the sun so that's another reason I'm holding off on they HU. A couple of people have mentioned liver enzymes now when taking Pegasys, so I've made a note of that for when I meet my new oncologist.
Hi, I do indeed feel like the minority here with my treatment. The 2 aspirin a day has been well tolerated and I take 1 in the morning after eating and 1 at night. I also take curcumin 750mg which has really helped with any iching. (CuraMed by Terry Naturally) My platelets have risen and are now 1300 and whites elevated too. The HCT though rises a lot slower now. Before I got one every 3 months and lately it's every 4 months. Maybe the 2 aspirin versus one?? I do at times struggle mentally with whether I'm doing the right treatment option especially after reading all these posts in which everyone is taking some drug to lower their counts. I only decided on my current treatment option after my MPN specialist (A well known & well published expert on MPN disorders out of Mayo) said to me, "If you were my sister, I would have you on 2 aspirin a day with Phlebotomy's as needed." He has seen me since I was 45 and newly diagnosed. He tends to look at the whole person and not just the numbers on paper although this is very important. He does not believe in the chronological age (over 60) to be the sole determination of going on a drug. He also relies heavily on what the research is saying regarding INF's, HU and other drugs. His name is on a lot of these studies as he is a leader in this field. The Pegasy's wasn't well tolerated in my body and HU is just plain scary for me because of family skin cancer. I also winter in Arizona and like you love the sun although I'm careful. I did go on HU for 2 months as my hematologist here in Anchorage freaked out the day I turned 60 and with Covid being rampant. I felt fine on it for the 2 months but still hated taking a toxic drug. It lowered my platelets from 1200 to 500 within that time frame but was not lowering my HCT number much. He said the drugs out so far have not proven to be a cure although a very few go into remission. (rare) He does not believe in all the allele burden discussion but is totally open to changing his viewpoint if there is sound medical research to support the benefits of lowering the allele burden. Sorry for the rambling but your reluctance to go on a toxic drug is similar to mine. If you haven't yet, it is extremely important to find a MPN specialist!!! Good luck.......remember we are all unique with how we respond to PV/ET and treatment. None of us respond exactly the same way. Kerry
Thanks for sharing your experience. I take the aspirin the same way, one in the morning and at night with food and so far so good. I'd rather experience some ear ringing and/or stomach upset though than the HU side effects, but I'm just not sure how long I can ride this out without the chemo. I've been reading about cucurmin and am getting some of that today. I haven't ever heard of the allele burden so will bring that up with my new doctor...I still have a lot to learn.
My sense is that regular CBC/phlebotomy to keep HCT under 45 is the standard therapeutic approach to PV; I'm not sure about ET. Hydroxyurea/Hydrea is usually prescribed to lower platelets. This worked initially for me but not so well later (I was diagnosed in 2015 at age 71); however, my counts seem roughly stable now, though a bit high. My small-town hematologist isn't very familiar with MPN, so I've been trying to find doctors at MPN research centers who have treated many cases and are familiar with new treatment modalities, first at Johns Hopkins and now at UPenn. . Good luck!
Hi, thanks for your reply. I feel the same, that my doctors just don't really know much about MPNs so they just go by the textbook protocols. I'm definitely going to pursue meeting with an MPN specialist, but it might not be practical for maintenance as the nearest one is in a town an hour or more away. Good luck to you as well!
The same is true for me; I have a local hematologist but am trying to arrange to see one with particular MPN experience at least once a year. This will require a trip of 3-5 hours!
Hope you can get to see a specialist. A long long trip but worth while as they will adjust and monitor your health so well. Please let us know how everything goes.
I've just seen Dr. Selina Luger at UPenn in Philadelphia. Definitely a long trip but very worthwhile. I will soon give up HU and start ruxolitinib. In my opinion, it's really important to be able to be seen (every so foten) by a doctor with depth of experience with PV and other MPNs.
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