Starting hydroxycarbamide and scared!: Hi everyone... - MPN Voice

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Starting hydroxycarbamide and scared!

Tmg59
Tmg59

Hi everyone.

It's been a while since I posted but I have been reading a lot on here and find it so reassuring and comforting. I an 60, have PRV Jak2+ diagnosed 4 years ago and thought I was going to start Peginterferon in a couple of weeks (I had delayed starting last year as had holiday booked in caribbean for a friends wedding and obviously wasnt sure of side effects - then cancelled due to Covid!!). However , I've just had telephone consultation with my consultant who has informed me that Peg now has to be approved as I am 'over' 60 , so the chances are I will now have to go on Hydroxycarbamide. I had just got my head round starting Peg so this has come as a bit of a shock. Just looking for reassurance from any of you on Hydroxycarbamide . Thank you in advance , it really helps being part of this special group.

Best wishes

Tmg59

44 Replies
oldestnewest

I am almost 60 ( it only seems yesterday l was 50) still have a couple of months to go

Started HU two months now and so far l have no side effects. I was anxious when l started but many people on here tolerate it well. You will also be monitored closely with regular blood counts etc. Hope it goes well for you

Tmg59
Tmg59 in reply to Dovme

Hi Dovme

Thank you so much for your reply. I know, where do the years go?!!! I'm glad to hear you're tolerating Hydroxycarbamide well. It had taken me a while to make the decision between Hyroxy and Peg, so now I'm really anxious again being told I may have to go on Hydroxy anyway. All my research has been into Peg, so now frantically trying to find out about Hydroxy! Apparently it's all down to the Trust now 🤞. I hope you continue to tolerate well and thank you again for your reassurance.

Regards

mhos61
mhos61 in reply to Tmg59

Sounds like it’s about saving money to me!

It would be nice if you were given a choice, but that’s the way it is with some Health Trusts, including mine.

Push for Pegasys by all means, unlike hydrea it works at a deeper molecular level, halting disease in some cases.

However, if you do have to start hydrea, it’s tolerated very well by most. I have been on it for four years with absolutely no side effects. It brought my platelets down quickly, and I have remained stable on the same low dose throughout. I feel better on hydrea than not, I am very grateful that it lowers my thrombotic risk too.

Mary

Tmg59
Tmg59 in reply to mhos61

Thank you Mary. Its reassuring to hear you've been doing well on Hydroxy. Yes, you're right I think .... all about the money 🙁. I'm just cross with myself because if I'd started Peg 6 months ago instead of hesitating, there was no having to get approval through the Trust then.

Wishing you all the best.

Tmg59

Keiks
Keiks in reply to Dovme

Hi I’m 60 .. diagnosed just over 2 years ago.. I started HU 1 week ago... I was terrified too... so much so that it took me almost 3 weeks to finally start it because I thought I needed it and better to try it then to possibly worsen my risks without it. I was so relieved... felt better that I finally took the step and I’ve had no side effects whatsoever!!😁. I take it just before bed with full glass of water and half a slice of bread. I got my strength from this forum so hopefully you’ll be fine. Let us know how it goes when your ready!!

Tmg59
Tmg59 in reply to Keiks

Hi Keiks

Glad to hear that you're tolerating HU well, its certainly reassuring me hearing so many positive stories from this wonderful group. As you say, it's taking that first step! I'm due to speak to my nurse Monday and should know in the next week which treatment it will be, so I'll keep you informed and fingers crossed if its HU, I can tolerate it as well as others on here.

Wishing you well.

Tina x

Loubprv
LoubprvVolunteer

Hi Fear not!! I ve been on Hydroxi for 11 years and am absolutely fine! Touch wood!

I take two a day - I think because they re classed as chemo we all get a fit of the jitters but it’s a very mild chemo drug used widely.

You ll be fine too

Louise

xx

Tmg59
Tmg59 in reply to Loubprv

Thank you Louise. It's good to hear you're doing well on Hydroxy and very reassuring. I have emailed my specialist nurse about fighting for Peg, but having heard from you all, I'm feeling a bit more at ease about Hydroxy. As you say, because I know it's a chemo tablet, albeit very subtle, it makes you very anxious.

With very best wishes

Tina x

Inca
Inca in reply to Loubprv

Hi Louise,

Iwas on Hydrea for 10 yrs ,dose getting higher,then it became toxic for me,hospitalised,then put on to Rux....on that now for over a year...seems slowly to getting my counts a bit better...we just have to accept these drugs keep us alive and deal with any fear and side effects. Thank goodness for new drugs now,I would have been a 'goner' without Rux ,which was not available 10 yrs ago. We must never give up hope !!!!Best to you.Sally

I'm not on HU now but I was for 16 years and found it absolutely fine apart from some mouth ulcers on higher doses.

Tmg59
Tmg59 in reply to Otterfield

Thank you Otterfield. It's very reassuring to hear you got on fine with HU and for such a long time. I take it you've now changed treatment and hope you remain well. It's such a help to have knowledge and support from this group at what is a very scary time.

Best wishes

Tina x

Please don’t worry, there’s no need, I’ve taken Hydroxy for a long time with no side effects apart from tiredness which comes from the illness anyway. Good luck.

Tmg59
Tmg59 in reply to francesb

Thank you francesb. It's so reassuring hearing everyones experiences, which seem to be mostly positive and it's definitely putting my mind at rest.

Best wishes

Tina x

Hello. I am 60 in a couple of months, diagnosed with PV Jaks 2 + 5 years ago. I have been taking Hydroxycarbamide for 5 years now. I take 11 tablets a week along with aspirin and 3 monthly venesection .

Like you I was very anxious. I have had no side effects. My consultant monitored my bloods every 2 weeks at first now it’s 3 monthly. All going ok. I am sure you will be ok.

Good luck and take care

Hi Tina, I was on hydroxycarbonide for about 8 years and had no side effects at all. I started on a high dosage of 5 per day and then reduced to 3 per day. They say to watch you exposure to the sun - ie wear suncream. Ivam now on Anagrelide which has been fine too. Try not to worry too much and take a look on MPN Voice for information and advice plus I would recommend always a second opinion if you are uncertain. Good luck with everything. Lisa

Glad to hear all are doing well with no side effects. I had a similar question since My spouse was diagnosed with MF JAK2 two months ago and currently on xeralto and aspirin since he has had blood clots

Dr wants him on Droxia 200 mg and he also has the questions on side effects

his numbers are not that much out of the norm but his LDH is high plus some fatigue

He is 71 , so why do some Dr recommend Peg or does one need to ask about it. I know each persons case may be different . Sorry but I am new to all this terminology and have been reading up on all this. So any sharing would be useful thanks

mhos61
mhos61 in reply to Bainbridge

MF needs to be addressed with professional expertise. I would advise your spouse to see an MPN Specialist.

For further information on MF and treatment, I have posted a link below to MPN Voice.

mpnvoice.org.uk/

I also have PRV Jak2 diagnosed about 22 months ago.

I’ve been on Hydroxycarbamide for 16 months and currently take 10 tablets a week.

Initially, I had a problem with mouth ulcers, my mistake was to try to battle through! Once my consultant saw me she stopped the hydroxy until they cleared.

By slowly building the dose back up I now find I have no side effects.

I agree with other comments in that I think we hear the word chemo and panic.

Good luck, I hope it goes well for the you x

Although there does seem to have been a lot of good reports about Peg recently, at least you know that if you don't tolerate or respond well to hydroxy. you do have a back up. On the other hand, hydroxy has been well tested over the years. I have been on hydroxy for 4 years with no real problems. I currently take 10 a week. However you do need to be careful with the sun and have plenty of water to drink. Good luck, I hope it goes well for you.

Hi, I started Hydroxy a year ago and like yourself I was nervous about it. Initially I was on 500 mg every other day and suffered no ill effects . In July last due to an increase in symptoms and bloods my Haemo increased my dose to 500 mg. 5 days a week Monday to Friday again no ill effects. The best of luck and try not to worry too much most of us tolerate Hydroxy pretty well.

Kind regards

Garry

Tmg59
Tmg59 in reply to redumbrella

Thank you Garry. Its certainly reassuring to hear so many positives about Hydroxy and it's definitely putting my mind at ease a bit. Hope you continue to do well.

Best wishes

Tina

I am very sorry for the situation you are in. But things are not so scary. I started with HU 20 years ago and now I am 43 years old. The only thing I could tell you is that apart from some headaches and mouth ulcers I have nothing else. I drink a lot of water, watch what I eat and exercise when I can. Wishing you all the best.

My husband was petrified starting hydroxy but in all he's had no side effects whatsoever.

He's now on ruxolitanib as his PV changed to post PV MF now.

He lives a really good normal life . Ruxolitanib has been a life changer for him .

Good luck

Hi

I started Hydroxy 10 months ago. I was petrified about starting on it, but am now settled on it and no side effects. I feel a bit sick sometimes at weekends as I have a double dose Sat/Sun, but have got anti-nausea tablets which work well for that and so it isn't an issue. My platelet counts have now come down to normal which is great.

I was on Allopurinol for a few weeks when I began the Hydroxy, to prevent gout, and they made me feel sick and dizzy, but it was tolerable with the anti nausea tablets. I felt much better when I stopped the Allopurinol though.

Good luck, I hope all goes well for you.

I was diagnosed in June last year have been on hydroxycarbamide since then I take 9 a week and 1 baby aspirin each day all my bloods ore now normal and so far I feel fine hopefully this helps it is a worrying time for you but I feel so much better in my mind now I am back to normal x

Tmg59
Tmg59 in reply to Tilly_Rose

Thank you Tilly Rose. I am pleased to hear you are tolerating Hydroxycarbamide well at the moment and hope that continues to be the case. If you dont mind me asking, have you had any hair loss? Obviously a big worry of mine!

Wishing you all the best

Tina x

Tilly_Rose
Tilly_Rose in reply to Tmg59

No I haven’t had any hair loss, I also had itchy skin after a shower but that has also stopped so at the moment all is fine with me x

Tmg59
Tmg59 in reply to Tilly_Rose

Glad to hear that and is certainly reassuring, although I know we all react differently. It's just comforting to hear everyone's experiences.

Thank you again x

You will hear a wide range of experiences and opinions about both hydroxyurea and PEGylated Interferon. We each have unique presentations of our MPN and we each respond differently to the meds used to treat. ALL of the meds have a risk/benefit profile. it is important to make decisions about medications based on facts rather than fear. Here is some basic information about HU.

drugs.com/monograph/hydroxy...

statpearls.com/kb/viewartic...

journals.lww.com/theendocri...

HU works in a very way than PEGylated Interferon. PEG-IFN is an immunotherapy. HU is a chemotherapy. HU interferes with DNA activity in your body, including in the hemapoietic stem cells that produce all blood cell lines. That is its benefit. The risk stems in part from the fact that HU breaks allele strands and interferes with DNA self-repair function. It is a teratogen, carcinogen, mutagen, and leukemogen (the latter when used for more than 10 years). If you decide that HU is in your best interests to take, then there are some specific simple precautions you need to take to prevent exposing others in your household from exposure to the toxic effects. Wash your hands after touching the meds. Do not have your partner touch the bottle or the meds without gloves. Use a condom if you are still sexually active as HU passes into semen/vaginal secretions.

Here are two presentations re. PV treatment with two different viewpoints

vjhemonc.com/video/4kie_7r9...

youtube.com/watch?v=ZlqWabW...

There is no rush to make a decision on this. Some of the protocols have actually shifted to age 65 as the "high risk" band. Please take the time to educate yourself about your options before you make a decision. For what it is worth, I am hydroxyurea intolerant. I learned the hard way about its toxic effects. Based on consultation from a MPN Specialist (Dr. Spivak) I am following a phlebotomy-only protocol at age 65. I may need to go back on medication at some point. If so, I will definitely opt for PEGylated Interferon. Please note that you will hear other opinions from people who seem to do OK on HU. Ultimately it is up to you to decide what is in your best interests.

Assertive patients receive higher quality care. Passive patients do not. If you decide that PEGylated Interferon is a better choice for you, then you may have to push to make it happen. Some systems of care prefer HU to PEG-IFN not because it is better, but because it is cheaper. HU=$70/month. PEG-IFN=$4000/month. Systems of care recognize the risks for long-term use so will more willingly pay for a younger person to receive it. Not so for an older person.

No one can tell you what the best decision for you is. Only you can decide that. Please be sure to consult with a MPN-Specialist and not just a regular hematologist. mpnforum.com/list-hem./ . Ask lots of questions and do not make a decision until you are confident in the decision you are making. In the absence of immediate symptoms, ou have plenty of time to decide.

Tmg59
Tmg59 in reply to hunter5582

Hi Hunter

Thank you so much for your in depth reply. I will certainly take the time to look at info you have suggested. I am very appreciative of everyone's input, it really does help.

Best wishes

Tina x

hunter5582
hunter5582 in reply to Tmg59

I see the Richard Silver presentation did not load. Try this link instead. It will take you to multiple links, including the one on PV,

Tmg59
Tmg59 in reply to hunter5582

Thank you, but I can't see any link attached 🙁

Manouche
Manouche in reply to Tmg59

This is the link Hunter was mentioning earlier on

youtube.com/watch?v=ZlqWabW...

Tmg59
Tmg59 in reply to Manouche

Thank you Manouche

Hi, thanks for your post, I am in a similar boat, in the sense that later this month I will have my phone consultation where I am expecting to discuss drug treatment. I am 58, PV, Jak 2+. A lot depends on the next blood test (on Monday) as my situation is borderline. Like you I have been hoping to be put on pegasys rather that hydroxycarbamide, and am worried, so it is useful to read that many tolerate it. I am however aware that reactions are very individual and have a tendency to distrust drugs!! (not in a silly way, if necessary of course I will undergo treatment, but I have been lucky and healthy for all these years until the recent PV and am pretty much symptomless , so tough to accept!). Good luck with your drug treatment, sometimes it is just a question of breaking the ice to discover it really is not as bad as we'd imagined.

Tmg59
Tmg59 in reply to Aldebaran25

Thank you Aldebaran25. like you, I've been healthy and active until PV diagnosis and dont really have many symptoms at moment which made it very difficult to accept treatment in first place knowing that while I feel fine at minute I am going to potentially make myself feel "ill" with medication. Therefore, it was very upsetting and frustrating after receiving comments and advice from this forum and discussing and deciding with consultant to go for PEG a few months ago only to be told this week that it now has to have Trust approval ☹ and so it might be I start Hydroxycarbamide. Hence, my panic now! I cant stress enough how much the people on this forum have helped me. I hope your consultation goes well and wish you all the best for the future.

Tina x

hunter5582
hunter5582 in reply to Tmg59

I would suggest you can just wait for PEG-IFN approval. No reason to start a medical you do not want to take of you do not need to.

Tmg59
Tmg59 in reply to hunter5582

Thanks Hunter. I'm due to speak to my nurse Monday about making my case for PEG 🤞. Its very comforting to hear everyones views and experiences.

Best wishes

Tina

Thanks Manouche. It's good to get so much feedback.

Best wishes

Tina

hunter5582
hunter5582 in reply to Tmg59

Pretending may not be necessary. Lots of us have adverse effects as "Hydroxyurea is a highly toxic medication with a low therapeutic index. Toxic effects are common at therapeutic doses." (American Society of Health System Pharmacists). Cite on NIH ToxNet. How sad that someone would have to jump through these hoops just because of ab age-discriminatory formulary from a healthcare system.

Tmg59
Tmg59 in reply to hunter5582

Thanks Hunter. I get to speak to my nurse tomorrow and after reading so many reassuring comments, I will still push for PEG, but if it has to be HU, so be it. I do believe in fate and that everything happens for a reason.

Best wishes

Tina

I agree with Hunter pretending to have symptoms on HU if you don’t may not be wise for example if you do get peg and it doesn’t work out ( remember it too can cause possible adverse side effects - all these drugs do ) or you decided you felt better with HU how do you then return back ? Best to be honest with doctors argue in a different way

Tmg59
Tmg59 in reply to Dovme

Hi Dovme

Thank you forcreplt. As I have said to Hunter, I am a great believer in fate, so while I will still fight for PEG, if it has to be HU then maybe it's for a reason.

Best wishes

Tina

Mazcd
MazcdAdministrator in reply to Dovme

I agree, it is very unwise to report false symptoms to your medical team. The only way they can help any patient is by both the team and the patient being honest and open with each other. Maz

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