Hi. I'm new to this forum so here goes. I am 60 years old and was diagnosed with PV 4 years ago. At the moment I am on daily Aspirin and venesection about every 2 months when levels are over 45 (usually between 43 and 47), platelets between 575-650). My consultant has said that as I am now 60 she wants me to start either Hydroxy or peg interferon and there's my dilemma!! I am scared of either! I feel I want to stay as I am at the moment while my levels arent particularly high, but then that might be the wrong decision!? I wondered if anyone else has had to make this decision and how have you coped with medications and side effects, the main one worrying me as a woman is the hair loss. Looking forward to hearing your replies. Thank you. Tmg59
Hydroxycarbamide or pegylated interferon? - MPN Voice
Hydroxycarbamide or pegylated interferon?
Personally, I didn’t hesitate one sec!
practiceupdate.com/content/...
« After a median follow-up period of 11 years (range 1–45 years), the overall median myelofibrosis-free survival (MFS) was 19.5 years. Median overall survival (OS) was 26.3. When evaluating outcomes based on treatment type, median MFS and OS were, respectively, 27 and 28 years for the interferon-alpha arm, 18 and 26 years for the hydroxyurea arm, and 14 and 25 years for the phlebotomy only arm (log-rank P < .01 for MFS and P = .01 for OS). »
“This is the first time that interferon has been shown to improve survival in patients with polycythemia vera, compared with phlebotomy only or [hydroxyurea], as well as significantly increasing the time to develop myelofibrosis,” said Dr. Silver “The limitations to the study are that it is a single institution and retrospective. Nevertheless, this is a new observation of significance.”
Me too. I wonder about hydroxy and hair loss. Do you get hair loss with 500 mg daily?
Hello. I was diagnosed with PV Jaks 2+ 5 years ago this August. At first I was as you having venesections and aspirin. After roughly 6 months my consultant put me on Hydroxycarbamide. I was very anxious like you . I have no extra hair loss and no side effects. My levels were high to begin with, but now quite stable with venesections usually every 3 months. I feel much better in myself. I am 60 this year. Take care
Hi Maisie10
Thank you for your reply. It's such a hard decision. Do you manage the sun exposure issue ok? We are quite outdoorsy people and this is another concern for me.
Hello. Like you I found it very hard just the thought of taking chemo tablets! I wasn’t given a choice of tablets. I find being outdoors fine. No problem. I don’t mind the sun but normally sit in the shade. I don’t suffer from itchy skin from the heat. Taking the tablets don’t stop me from doing anything different only now I don’t get my terrible headaches so that’s a bonus. I do get tired but I think everyone does with whatever they take.
I am on 11 Hydroxy tablets a week and an aspirin every day. Hope this helps. Take care x
Thank you. Yes really helping. I have said from first discussion with my consultant that I would go on Peginterferon but as the time approaches, due to start in about 2 months, and I'm looking into it more, I am having second thoughts. Hearing everyone's thoughts and experiences is really helping. Thank you again.
I was advised to start medication a year ago as I was over 60, opted for Interferon. (I love open water swimming and therefore didn’t want to cover up in the sunshine as advised when on Hydroxy). Have a few side effects the day after injection, (mainly a bit achy and grumpy), but I’m on quite a high dose. Otherwise feel my normal self, and was able to carry on with my lifestyle as normal.
Hi swimswam. Thank you for your reply. Have you had any hair loss with peginterferon? We have a campervan and love the outdoors so the avoiding sun with hydroxy is also an issue for me.
Hi Tmg59, I was on standard interferon for a year as my trust wouldn’t pay for Pegasys, and I did experience some hair thinning. I have since been changed to Pegasys the last five months and my hair is now back to normal.
Hi swimswam
Thank you again for your reply, it really is helpful to hear other peoples stories. Did you have many symptoms before starting treatment? This is another of my issues as at the moment I only have night sweats and occasional headaches and am finding it hard to get my head round taking a drug that potentially is going to make me feel worse! I have mentioned this to my haematologist but her argument is the increased risk of stroke/heart attack over 60. Thank you again
Hi Tmg59,
I was in exactly the same situation as you. I am a fit active person, working full time with very little side effects. (Occasional pins and needles in my feet, and the occasional night sweat). I found it very hard to accept that I should take anything other than aspirin. In fact my first consultant agreed, and I continued with just aspirin for over a year. Then my consultant left, and my new one told me I had been misinformed, and that people over 60 was at greater risk of a stroke. This worried me as my mother died of a stroke at 70, so I agreed to start treatment. Still wonder if it was the right decision though as my Haem. Nurse says that it is only my age that means I am on treatment as physically I’m lucky to be a lot more active than most over 60’s.
Thank you swimswam. I'm sorry to hear your mother died so young and while I have no family history of strokes, it is a worry if I dont go on treatment. Its that not knowing. I think I am edging towards the Peg still, but it's such a hard decision. Thank you again, take care.
I was diagnosed with PV 4 years ago when I was 65 . I had a couple of venesections during the diagnosis phase but was then put onto hydroxy which has worked OK for me. No real side effects apart from dry skin -and the need to be especially careful about the sun. In the last year, with all the positive research about interferon, I discussed this with my haem in February -but her advice was to stay with hdroxy.
Sorry can't help with medications, but intrigued by your haematoligist suggesting medication as you are 60.
I'm 64 and have had PV for 12 years. Venesections about 3a year, until the last 12 months when they were still about every 4 months, but 2 at a time making 6. Also on daily aspirin. It may be that I tolerate venesection and my Ferritin level is low (4).
The only time medications have been mentioned was at the beginning, when I was told one day I might need to take medications.
I'm sure you'll make the right decision about meds. Fingers crossed they will be fine.
My situation is similar to you...but I am male and 63. PV since ~ 2013. I am asymptomatic apart from itching after a shower.I do a few venesections a year and am on aspirin. I have had no advice to go on any other medication and will stay like that. I believe in fitness and exercise. Good luck with whatever route you choose.
Thank you all for your comments, I really appreciate it. My consultant told me that people over 60 are more susceptible to stroke/heart attack in general but PV increases that, hence advised at 60 to go on hydroxy/peg (just their guideline I guess). I'm just struggling to get my head round the fact that I feel fine with aspirin and occasional venesection which I tolerate very well and I'm going to start a treatment that potentially could make me feel worse! Thank you all again. It really helps to get other peoples opinions.
Just want to add my experience. I pushed back for years at the idea of taking medication because of side effects. Am now 74, diagnosed with PV jak+ at 65. Did phlebotomy and aspirin only until last year when doc convinced me to try hydrea. No side effects at all and much improvement of symptoms, especially fatigue. No hair loss. But let me mention that low ferritin levels which result from frequent phlebotomies can cause brittle hair and nails which break easily. Lots of good products can add moisture to hair and prevent breakage. I do a deep conditioning mask at least once a week and it has worked wonders. Best of luck to you.
Thank you for your reply. Did your consultant try to get you on hydra before last year and did you fight this? This is my issue that I feel well at the moment apart from night sweats and occasional headaches with Aspirin/venesection and my hematocrit and platelets arent consistently high, but will potentially make myself worse with hyroxy/peg. Thank you again for your reply. Take care
The reason my doctor wanted me to go on hydrea (and yes, I fought it for years unti 3 different doctors convinced me I needed it) was to lower risk of thrombotic event. At over 60 I was at high risk statistically. Risk goes from 33% to 10%. I really didn’t want to have a stroke so I finally consented. I felt so much better on it I regret putting it off for so long. You might give it a try. You can always stop taking it if it bothers you. My doctor said most people tolerate it well. Good luck to you. Making these treatment decisions is very difficulty I know.
Hi I been diagnose high platelets count Jak 2 positive...And I am taking hydroxycarbamide since 2010 until now & my hair still normal.I thank To Jesus our Lord all is great.Our Lord is really good my greatest Physician.Praise the Lord!!!
The standard thing with the NHS is to put patients on meds once 60, the theory being you are higher thrombotic risk, if you are not high risk otherwise and looking at your counts there may be no need to go on meds if you are feeling well symptom wise, a lot of the top haems don't treat platelets alone unless over 1 million plus. The thrombotic risk has to be your decision, when I turned 60 they said the same to me but I am fit and slim and no other health problems so I decided not to at the time. If you do decide on meds I note you prefer Peg, of the drugs currently available it might be the best one to start with. Some of the pros and cons as are as follows. Hydroxy which is low dose chemo is easy to take and will probably reduce your counts quickly easily, you may feel better or worse on it, some get dry hair or nail issues and some on it for longer periods can get leg ulcers and skin cancer, its on the leaflet, some docs are of the view that in the long term it can perhaps increase the chances of leukaemia, not all docs agree with that but its well documented. As far as I am aware it doesn't do anything to slow progression. Pegasys is not chemo , it is by subc injection usually weekly, it can take longer to work ie from a few months to years for a few, some drop out due to side effects approx. 20-40%, the trick with Pegasys is to start low dose usually 45mcg then after a month or so increase to 90mcg, if after a few months nothing is happening up it again, some go up to 180mcg but if the drug is going to work some find that after a period they can reduce the dose and some come back down to 90 or 45 a week or some 45 a month or less, a small minority can go for periods of months without needing to take any, this is because for some it reverse the damage in the bone marrow and some expert docs believe it can slow progression, that is a well debated subject.
The potential downside to Pegasys is the side effects for some and it may take longer to work but it looks like you don't need meds urgently. I am not sure how widely Pegasys is used in the NHS now, when I tried it in 2013 I had to pay for it and the Scottish NHS were not keen. I know many in the US who have done extremely well on it. It would be my drug of choice from what is available now. Unfortunately I had to drop it because I am in the extreme minority that it makes dramatically itchier, it also made me depressed but that doesn't happen to everyone. Pegasys can bring on autoimmune issues in a small minority. Going on meds can be a tricky but important decision to have to make, if your not sure maybe get a second opinion maybe from a MPN expert and research as much as you can and maybe take your time to chose the right one. I hope that helps
Kye PV 2010, Ruxolitinib,aspirin, UVB for itch
Hi Ainslie
Thank you so much for your detailed reply which is really helpful and has confirmed what I have been reading/hearing. I have spoken to the haem nurse today and I think I am going to go for Peg and see how I go. As she said I will just have to come off it if not suiting me. It's one of those decisions that if I dont go on meds and then have a stroke, I'll have wished I'd gone on them! If only we could see into the future!! Thank you so much again for your reply. Take care
Belated welcome to the forum! (I've only just read your post.) I hope your appointment went well and that you and your medical advisers were able to reach a treatment decision that you are comfortable with.
I'm about the same age as you and was diagnosed with ET in Feb 2019 (though I'd probably had the condition for a few years already). At first, still just below 60, I was put on low-dose Aspirin (anti-coagulant) etc; various scans were done to see if there were underlying issues that might make one or other further medication unsuitable. During 2019 my platelet counts were in the 800s and 900s. About 5 months ago chemotherapy with Hydroxycarbamide was added to my treatment, as it was felt necessary to reduce the platelet count and thus reduce the risk of stroke etc. I was told that any hair loss would be something you might notice in your comb/brush but not the drastic loss associated with the more "severe" forms of chemotherapy. Recently I have started to experience hair loss at a greater rate than ever before, though that could be partly due to my age as well as the chemotherapy.
My understanding is that cytoreduction by chemotherapy is a way of managing the symptoms of MPNs and reducing the associated thrombotic risks but it does not address the disease processes. Interferon (by means still not fully understood perhaps) seems to reverse the underlying malignancy to some extent. My reading suggests that some experts in the field think that all MPNers should be on Interferon from the earliest stage after diagnosis but that is not yet standard practice in the NHS as far as I can tell (cost may also be a factor). What would scare me about Interferon is having to inject the medication ...
Good luck with whatever you have decided to do!
Hi Jak2ET
thank you so much for your reply. I had telephone consultation yesterday and have chosen Peginterferon. I have to say I made the decision after hearing everyones experiences on this forum. I am so glad I joined as it has helped more than I can say. As you say the thought of having to inject yourself is scary as is the possibility of hair loss and I'm sorry to hear you've experienced it worse lately. Like I've mentioned in other posts, it's the thought that I feel fine at the moment on daily Aspirin and occasional venesection and I'm potentially going to make myself poorly by taking medication. However, i understand there are guidelines for starting treatment and mine us my age, but after having so many positive posts on here, I feel much more accepting of my situation now.
Thank you again for replying to my post. I hope all goes well with your treatment and any side effects start to settle down. I would love to hear how you're getting on.
Take care
Tina
Hi Tmg59
Just read your post and was wondering how you are getting on with Peg interferon. I am facing the exact same dilemma as you did 4 years ago. I have PV and JAK2+., diagnosed a year ago. I’m currently only on aspirin, I’m otherwise fit and healthy and have no real symptoms. I am also anxious about going on medication which could make me feel unwell and also worried about hair loss and some of the other side effects. My consultant is not currently pushing me to go on medication although my age, 62, puts me in the high risk category, so I am considering which medication to go on. First line treatment seems to be hydrea, probably due to cost, but Peg Interferon has additional benefits so seems a better choice overall.
I hope you are doing well
Best wishes
Hi GoldieR
Thank you for texting.
I am doing well with Peginterferon. I started at 45 dose but have gradually increased and now on full dose (180) weekly. My HCT and platelets have improved but not as significantly as I thought. HCT around 40-43 (previously 43-47) but not had a venesection for over a year now. My platelets are around 480-550 (previously 550-620). I havent had any real noticeable side effects, thankfully. I did start using a nourishing hair shampoo and conditioner about 3 months before starting Peg and still use it now. I lose a bit more hair when I'm brushing but nothing major and my hairdresser says she hasnt noticed any difference at all. My teeth have suffered a bit with a few broken teeth over the last 3 years, so not sure if that could be anything to do with PV or Peg??? I am also iron deficient but consultant just keeping her eye on it at moment. I inject on a Sunday morning and feel absolutely fine after. I know quite a few people inject evening time so they can sleep through any flu like symptoms, but when the nurses at the hospital were showing me how to inject, my appointments were mornings and as I didnt get any side effects, I decided to carry on with morning injections. I do take injection out of fridge for a couple of minutes before injection and freeze my tummy before injecting and dont feel it at all! I injected myself for 6 months with no problem and then suddenly one Sunday I had needle ready to inject and just couldnt do it!! Lol. So now my husband does it for me, but that's just me! Lol
I know it's a hard decision when you're feeling well, but at some point we have to make the decision, however scary. As I was told, you can always stop it if you dont get on with it. We're all different and react differently, I know, but all I can say is that after being so scared of starting it, I have been absolutely fine.
Good luck with your treatment choice and please let me know how you get on with whichever treatment you start.
Best wishes
Hi Tmg59
Thank you so much for your reply. Great to hear that you are doing well on Peginterferon and that you’re not experiencing bad side effects, long may that continue! Everyone responds differently to the treatments so it’s so hard to know how you’re going to react to them. Do you get any flu like symptoms at all? That seems a common side effect for many. I’m going to discuss medications with my haematologist at my next appointment in February and I’m going to see if I can have shared care with an MPN specialist at Guys. I will keep you posted!
Wishing you well for 2024 and enjoy the festive season 🎄
Best wishes
Hi GoldieRGood luck with your appointment and treatment decision. Luckily I havent had any flu like symptoms. As you say, it seems a common side effect and I was fully expecting to experience it too, but I didn't.
Please let me know how you get on.
Merry Christmas and hope 2024 is good for you.
Best wishes
I was 38 when diagnosed with PV and at that time, doctors were recommending treatment and I was given pamphlets for those drugs. I said no to it all and stuck with aspirin and phlebotomies (venosections?). A couple years later, my hematologist said I had been right and new research showed it better not to treat until 60 as long as aspirin and phlebotomies were working ok. Then in 2022 I did go on Besremi (interferon) because it showed alot of promise. I did not have side effects but it lowered my counts too much. I was taken off Besremi after 8 months and diagnosed with MF after a BMB.
So this is a different situation as you are 60 but this is how I faced those decisions. Do what you feel is right for you.
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