Morning all.
I may have to change from HU after 12 years ( suits me fine but is now possibly causing bcc’s ) to interferon. Has anyone else migrated from hydroxicarbamide to interferon and had any reactions?
I think it’s a case of sticking with HU and risking having a face like a road map but feeling fine and my PV being well controlled, or changing drugs ....
Thanks so much.
Louise
xx
Hi Louise,I can’t help I’m afraid. I hope someone can give you good advice.
You made me feel so much better about having to start the Hydroxy 8 years ago. I’ve had just one SCC on my hand. I’m wondering I’d that is just the start, so will be very interested in your replies.
Much love to you and the family
Judy xx
Hi Judy lovely to hear from you. I ll have to be guided by my consultant. I m loathe to change because HU suits me in every other way. Eyelashes have almost disappeared, managing to hang on to my hair - mostly! But am concerned about red blips on face.
Ho hum. Can’t complain almost 12 years down the road. Maybe I ll stay with the HU and just carry on wearing a mask everywhere I go 😂😂 xx
Oh wow! My eyelashes are practically non existent as well. I wondered if that was the Hydroxy? My hair is thin, but still on my head 😆
I would say almost definitely. I used to have really thick long eyelashes. But hey! What the heck. As for hair in the nether regions. Got about 3. I hang Christmas lights on them to brighten things up a bit 😂😂😂
That would be a yes to HU causing alopecia. "Hair loss - You could lose all your hair. This includes your eyelashes, eyebrows, underarm, leg and sometimes pubic hair. Your hair will usually grow back once treatment has finished but it is likely to be softer. It may grow back a different colour or be curlier than before. "
cancerresearchuk.org/about-...
So yes HU can cause alopecia - but so can iron deficiency. I can be a bit hard to sort out. I am having body hair alopecia from the iron deficiency, including eyebrows. Also damaging nails. Have lost most of the hair on top of my head, but expect that is genetics. Good thing I like my buzz cut! At least I do not get hat-head anymore.
Hope you all get the alopecia sorted out. It can be quite bothersome.
Hi Lou, I did the switch 5 months ago, now pleased I did, but was hard at first. Much pooing and weeing, and my hair fell out more for 2 months, coming back like normal now. Also been getting heartburn, nosebleeds and teeth gone looser. I have more energy. Looking back, and with information from the US webinars, I think best to go on half dose hydroxy and start with 45 peg at 2 week intervals, then make switch gradually. I had dramatic lowering of platelets then they whizzed up again, my consultant then wanted me to inject weekly, I could only cope with every 10 days, now back on fortnightly,I still think I could be best on half dose of each, because that would lessen side effects, but he wouldn't consider that. Good luck Jo
Thanks Jo - that’s really useful. I think I ve got to the stage where I look at all the patients at the Christie and think how lucky I am only to have PV! I ll suggest the half dose thing. Can cope with most things except feeling grim - which I don’t at the mo. I have a super Mpn specialist so one more thing to be thankful for. Louise xx
Hi Louise. I also suffered loss of secondary body hair after 17 years on HU and it made the hair on my head more curly. After 8 years on ruxolitinib it has not regrown and my head hair has become much straighter. Just yesterday I scratched an itch on my face without thinking and it bled for about half an hour. I have had that site biopsied twice and each time it came back as ‘sun damage’ with nothing sinister. I have never been treated with interferon so I can’t answer that part of your question but can identify with the permanent face mask! Maybe we should form a club but at least we have a valid excuse for now! Take care. Jan
Hello Louise,I started HU in 2017 , had some hair loss all over body. Unfortunately HU did not suit and I switched to Pegasys in July 2019. I started on 90mcg per weekly injection, dose increased to 135mcg weekly, extended to every 10 days, then every 14 days. Hair loss abated, I am glad to be on this drug although it takes a while to settle into it. We all react differently to medications and I see it as a joint decision with my Haematologist as to how we manage ET.
Not sure if this is helpful, but good luck with it all and a big thank you to everyone on this superbly supportive site.
Take care
Nellin
Hi JanThanks so much. Bit of a dilemma really. Hey ho. I won’t be offered Rux as I have PV, disappointing to know nothing grows back - but at least it won’t be any worse! Strangely my hair went really curly for a time about 6 years ago and then straightened again. However, we re all still here and feeling mostly fine so we can’t complain!
Masks to the fore! Just like phantom of the opera...😂
Louise
xx
Hi Louise. . 🎵Those who have seen your face🎶 . . .,I think that's out of Phantom but the next line isn't very complimentary so I definately won't go there - don't want to upset anyone !!
Maybe after 12 years you should try another drug or drugs, it may suit you well. I know you have a good Hem who you are happy with and trust , I wish I'd had one prior to my SCT who was proactive because I was keen to try a twinning treatment approach , taking another drug like HU alongside the Ruxolitinib.
Good luck whatever you decide to do , it's not an easy choice unless it's Hobsons choice.
Regards - Chris x
Hi Nellin Thankyou so much for taking the time to respond. Much appreciated. I think I m going to have to give changing meds serious consideration! Just a bit concerned about side effects....take careLouise
xx
Note to self : Must buy more baseball caps and rimmed hats !
Don’t get that one unless referring to sun damage? Bccs aren’t due to sun exposure unless I ve forgotten standing on my head in the sun with my mouth open ! ( had bccs on roof of mouth) Louise xx
That would make sense since HU can also cause oral carcinomas just like it can cause dermal carcinomas. I never developed any carcinomas, but had nasty oral ulcers along with leukoplakia (tuned my entire tongue white as snow). I d/c the HU before it got any worse. Hope no more bccs for you!!
Thanks so much. What do you take/ have now?
I have taken HU in the past. I am HU-intolerant, toxicity even at very low doses. I am on venesection-only right now. I may be starting one of the PEGylated interferons soon. I would prefer Besremi if it gets FDA approved. I am also considering PTG-300 once it is approved. Hopefully approval by the insurance company will be forthcoming.
Thanks so much. Will be having discussions with my brilliant consultant at the of April. Best wishes Louise
The drug leaflet refers to sun and skin cancer risks and so I assumed that's what you were referring to. Seems there was not much you could do to prevent yours though!. They must have been very annoying / painful?
Good face block and hats seem to be the way forward anyway!
Hi Louise, I can’t answer your question but I’ve been thinking of asking if I can change from Hydroxy to Interferon as I’ve had swelling in feet and ankles for at least four months now and a skin lesion on my hand which I think could be side effects. I have had skin cancers prior to being diagnosed with ET which were removed and with that being a side effect and the swelling feet and ankles a rare side effect of Hydroxy I wondered whether to ask for change. I’m glad you put this question and thanks to those who have answered.
Regards Fran
What is a BCC?
Hi a bcc is a basal cell carcinoma. Probably the most common form of non melanoma skin cancer. In other words it’s highly highly unlikely that it will kill you. However they can and do get bigger and they spread - which is why it’s wise to seek treatment. The most common form of treatment is either a cream ( that doesn’t always work) or having the bcc cut out under local anaesthetic which is completely painless. I was also offered a form of radiotherapy but when I asked what the maxillo facial surgeon would do if I was his wife he said without doubt - removal, which of course leaves a slight scar. I have quite a big scar on my forehead but to honest at 67 I m not bothered.
The surgeon said most skin damage surfacing these days will have been done at least 30/40 years ago or in childhood. So, yes do cover up and wear at least factor 30 in the sun - but remember not to beat yourself up for any damage only showing now because it was probably done years ago! I do wonder though how I got 2 bcc’s on the roof of my mouth - found thanks to my very vigilant dentist. If you do take HU do ask your dentist to check the inside of your mouth. Highly unlikely he will find anything but wise to check.
Louise xx
Many people move from HU to Peg, HU is easy to take and works quite well. Pegasys is usually weekly subc injection. It can take a while to kick in after starting so some people stay on HU for a while after starting Peg and as Peg kicks in reduce then stop HU. Peg would be kinder to your skin and hair and for some it has disease modifying properties, not everyone can tolerate it and the drop out rate is around 20%+ but for those it works for some see lowering of allele burden and molecular response, and a small minority achieve remission and can come off it for months or years. I tried it but made me itchier (very rare) and depressed (reasonably common) so now I am on Rux for PV.
Thanks so much. Will keep fingers crossed x
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