Hello everyone, it has been a very long time since I posted on here! Lovely to see that some posters are still active. I hope you are all well!
I have been fairly well after being diagnosed with ET about 10 years ago. I tried Interferon but it didn’t reduce the platelets, I was recommended Hydroxycarbamide as I was high risk after suffering two blood clots in the brain and one in my leg following child birth but I was too scared to try it and managed to persuade the consultants that my clots had been brought on by my caesarean section. I have been taking aspirin and then changed to Rivaroxaban which seemed to be doing the job but suddenly of late I have been bruising loads, headaches, blurred vision and burning feet. In general my health has declined: high blood pressure, gallbladder issues, the list goes on and my haematologist insists I start taking the Hydroxycarbamide for my safety.
I truly understand why but I cannot bring myself to start it. I have read lots about how after long use it can cause complications. I am 51 now and the side effects scare me. I know it sounds so vain and please forgive me but I do not want to lose my hair. To top it off I found out today that I will not be able to enjoy the sun either and that is the best way to disguise the unsightly bruising on my feet and ankles.
Please can anyone shed any light on whether they lost their hair and is it really true that I cannot enjoy the sun’s rays with this medication?
Hi @Sammy great to hear from you again.
I can understand you are frustrated, scared, anxious and fearful of side effects.
Unfortunately I cannot help with your question, but I hope others might be able to share their experiences
I will copy your post to the Blood Cancer UK nurse advisors in case they can add something. @BloodCancerUK_Nurses
I find it helps me to write down all my questions and fears before my medical appointments and be pleasantly assertive and ensure all are covered before I end the appointment.
Any decision you make must be what you are happiest with.
Hi, you are always so speedy in replying. Thanks for that. I know it isn’t always nice to hear negative comments but I think it is really important that patients know exactly what they are to expect. I am not happy to take it at all but I am starting to feel that the professionals are getting annoyed with me and may give up on me if i don’t agree to try it.
If it would help to talk to someone @Sammy the Blood Cancer UK support line is there for you on 0808 2080 888,
It sounds as you feel in such a difficult situation, be ever so kind to yourself and please do let us know how you get on.
Hello @Sammy. I really do understand your concerns. These patient information leaflets that list every possible side effect are scary to read. Even something simple like paracetamol these days comes with a whole list of potential problems. All I can say is that I took Hydroxycarbamide for twenty years in various different doses and it was well tolerated with no hair loss. Also my mother is still taking it with no problems either. My sister has recently started taking it also - all three of us have myeloproliferative neoplasms (MPN’s) and the haematologist has started her on a very lose dose to begin with to see how she tolerates it. She is doing well. Hope this reassures you. Thinking of you. Warm wishes. Willow X
I’m relatively new to taking the Hydroxycarbamide only having started in January my dosage has slowly been increased to two 500mg tablets a day but so far touch wood I haven’t had any major problems at all.
The only thing I’ve noticed is my stomach feels slightly washing machine like some days but generally I feel as healthy as I did before taking it.
As ever with these things probably the vast majority of people taking the drug are unlikely to comment on forums if they are feeling no symptoms, so the reports that you read will be biased towards those who are experiencing problems.
Hello @Sammy & a very warm welcome back to the forum.
I am so sorry to hear that your health hasn’t been great and you are left with some worries about your treatment decisions. Your concerns are understandable so please do know that if you would rather talk things through our helpline is open 7 days- 0808 2080 888.
We do know that Hydroxycarbamide is often a very well tolerated drug however like most medications it does have some listed side effects to consider.
As it is a mild form of chemotherapy it can cause hair thinning but as you will see this is very individual and certainly doesn’t happen to everyone.
It is also true that whilst you are taking this, you will need to take additional care when in the sun as your skin may change and be at more risk of skin cancers so practicing strong protection and limited exposure will help reduce the risk.
In case it is helpful in any way this webpage talks through some additional information about Hydroxycarbamide – MPN Voice.
I can already see others have brilliantly offered their own experiences which i do hope gives you some reassurance. However please do raise your concerns with your haematology team so they can understand both how your are feeling about the potential change of treatment but also so they can best support you with your next steps.
Again please do know our support team are here for you should you need any more support at all.
Hi Sammy Im not a doctor so cannot comment on specific risks but:
The big risks are on long term use. There are new drugs and protocols coming along at pace now. If you take this for a year then ask the question again might be a good approach.
I was reading a paper that in the US they now do combined Interfearon and Hydro treatment so both are much lower dosage. Might be worth asking on that or as I said start the Hydro and wait a short while.
My one bit of advice is dont damage the now for fear of what might happen in10 years time.
Hello everyone,
thank you all so much for your experiences and for some great advice. I might try it and see how it goes. it is very true that I should focus on the now and see what happens. I agree also that most people experiences on forums may be negative, we all know that negative feelings are mostly shared but I love that so many of you have been getting on so well with the medication.
I was surprised that Willow said her sister and mother both have MPNs as I was told it wasn’t a genetic condition. I was asking recently as I worried about my 10 year old son. Surely such a rare condition wouldn’t randomly occur to a mum and two daughters?
Thanks again for all your advice so far. It sounds odd but it is so comforting knowing you are not alone with the condition and that you al understand. My family are great listeners but they don’t fully understand.
Hello again @Sammy. Just to clarify, my sister is my identical twin and she was diagnosed about six months ago with ET. I was diagnosed thirty years ago in my thirties with an MPN that was hard to classify but had features of ET and myelofibrosis. My mother was diagnosed later in life with ET. My sister and I have both been found to have the faulty CALR gene and the guess is that our mother also has the same faulty gene. It has been explained to us that the doctors have never come across a family like ours. We weren’t born with this faulty gene so it isn’t genetic or passed on as such. Something has obviously triggered the gene to become faulty in each of us. Mine is particularly unusual as I was younger than average. We have been told that in very rare cases there can be a tendency for these conditions to run in families. Hope that makes sense. I don’t fully understand it and I don’t think the doctors do either. Warm wishes, Willow x
Wow identical twins, great! Thanks for clarifying. I think you are right the doctors don’t really know enough to say either way. when my son is a bit older I will get it checked. Fingers crossed he is OK.
Hello
I have ET, and was diagnosed three and a half years ago. From that time I have been taking Hydroxycarbamide with dosage increasing over time as my.platelet levels fluctuated. I am 78 years old. Have not lost my hair although I think it has thinned slightly. That could be an age thing. I feel no different than before my diagnosis, and am active and happy to have a treatment that enables me to continue that way. Why not give a try? I hope this helps.x
Hi @Sammy
I am almost 70 years old and have triple neg ET
I have been on low dose Hydroxycarbamide since 2019 ( almost 4years )
I had very similar reluctance - in fact I delayed, got upset and even argued in an attempt to not take!
My platelet levels had soared ( had been on the high side for some years but spiked … consultant and registrars were very patient with me when I wanted to see if the levels would fall naturally. Levels did very slowly start to reduce but still high.
No one put undue pressure on me as ultimately it was my decision but realising the pros were more than the cons I did begin but consultant was happy for me to start on the absolute lowest dose ( though would have preferred to put me on a higher dose ) and re assess me after a few months . Very gradually I needed to increase and now take one tablet daily with two tablets on Fridays , Saturdays and Sundays . I’m told even this is a fairly low dose .
My hair has not really changed ( maybe slightly finer but I am getting older and know this can happen naturally anyway .
I too have been a sun worshipper so I asked about this . I was told to “just take normal sensible precautions” like using sun cream etc and told I should be ok as long as I didn’t actually lie out sunbathing ! I have actually used the “gradual “ fake tan creams on my legs “ made by Dove is a good one “ for special events but not all the time.
After almost 4 years I don’t really worry too much now and I’m still regularly checked - they do keep an eye on you .
The only problem I did have was initially had some leg itching when I first started and I believe this can be linked to initial symptoms ( a bit like gout ) but they can give you a short course of tablets to counteract this . It soon passed .
Good luck and if you’re still reluctant maybe do as I did and ask if you can start low and increase , rather than start on a higher dose then reduce . ….possibly not ideal but if it helps your adapting to it ….
so lovely to hear from you all! Lots of excellent advice. I will be seeing my consultant in a couple of weeks when I need to give her my decision. Until then please keep your advice and experiences coming.
Hi @Panne a great welcome to posting on our forum and you have really shown one of the great values of our forum by sharing your experiences.
I look forward to hearing more about you so please do keep posting.
Look after yourself