Hydroxyurea side effects?

[Ridenez]

I have PV and I am Jak2+.Currently on Phlebotomy and baby aspirin.I usually have Phlebotomy about every 6 weeks to keep my Hematocrit below 45.Platelets around 600. Hemoglobin 13 and WBC on high side at 1750. I am considering Hydroxyurea or Busulfan oral. I know this has been discussed previously but am interested in side effects if any you have encountered with these chemo drugs good and bad. What are the benefits you are experiencing.I know everyone responds differently but would like to hear results. I am in USA . Thank you

[Ebot]

Hi there. I’ve been on Hydroxy for the past few years and can honestly say I’ve experienced only positive outcomes. My numbers tumbled and I felt like I’d had a new lease of life. I also stopped venesections which were becoming increasingly challenging. I realised all the angst I’d expended on worrying about starting treatment was really a waste of what little energy I had!

The only downside is the need to cover up and avoid the sun but the silver lining to that is, it gave me the impetus to do something I should have been doing in any case and it’s keeping the wrinkles at bay!

Busulfan may have other issues. I believe it’s rarely used here in the U.K. and then only on the oldest patients. Others may have more insights.

[Ridenez in reply to Ebot]

Ebot thanks for the reply. Yes I understand sunblock 35 is required. Best wishes to you

[Wyebird]

I’m ET after 3 weeks of hydroxi my plates started to lower and I started to feel better. I’m sure PV patients will be able to help you more. Good luck,

[Ridenez in reply to Wyebird]

Wyebird thank you. Good luck to you also.

[Tico]

On a plus side I can only say it helped me with quite severe symptoms I was experiencing at the time. The downside is after being on Hydrea for nearly 13 years I sometimes think about the high doses i've been taking for long periods of time which was 5 a day for 7days a week and at the lowest 3 a day for 7 days. Even though their is probably only a very small % of chance the longer you are on Hydrea it probably increases the chances of progressing to leukemia, very occasionly it will cross your mind the longer you take it at the doses I take the odds increase. All the best. Tina.🤗

[Ridenez in reply to Tico]

Tina thanks for the encouraging words. I send good wishes to you

[Hopetohelp]

Don’t know if you can get Pegysus (Pegylated interferon) in the USA but might be worth looking into. Good luck

[cmc_ufl in reply to Hopetohelp]

Some insurance plans in the USA cover Pegasys, but not all.

mpnresearchfoundation.org/U...

[tracey13]

My husband hasn't had any side effects at all from hydroxy over time it did make him iron difficient.He's now on ruxolitanib and he's had no side effects at all .

Tracey

[Ridenez in reply to tracey13]

Tracey thanks for you reply. Best wishes to you both

[JaK2ET]

I have ET and have found Hydroxycarbamide (Hydroxyurea) chemotherapy mostly positive so far, in that it has brought my platelets down to within the normal range, with corresponding benefits to my physical and mental health.

The main problem at this stage is that I suspect the chemotherapy is making it harder for a small ulcer-like leg wound to heal. I had two somewhat similar wounds in 2019, before I started the chemotherapy, and they healed themselves, albeit taking months to do so. A new wound developed in 2020, sometime after I began taking Hydroxycarbamide, and it is struggling to heal itself. My haematologist said he would refer me back to the dermatologist for an opinion on whether the chemotherapy is a significant factor in the development and poor healing of this wound ...

Good luck with your treatment!

[MPNBlog]

I have taken Hydroxy carbamide with no side effects - I felt fine, in fact I felt good; but it made my platelets oscillate wildly so I had to stop. I gather everyone's reaction is very personal, so you'd need to give it a go to see the effect on you. Busulfan is a older drug and usually only given to people over 80 years because of the potential to cause cancer if used over long periods. I see from your profile that you are 80+ yrs. Good to know that you are in the care of an MPN specialist. I'd be checking your risk profile. Phlebotomies and aspirin seems very low intervention for your age, so I guess that's why you are now considering medication. Pegasys is worth a go if you can self-inject as recent trial results are very promising. It used to be recommended for younger patients, but that now seems to not be the case. There can be side effects and I have found fatigue to be the worst one. The new Hepcidin drug to eliminate the need for phlebotomies is worth asking about, as a phlebotomy every 6 weeks when you are 80+ years must be a pain. All the best, and let us know what you decide.