I was diagnosed with JAK2 ET last September and have been on Hydroxyurea since then, with good clinical results and minimal side effects. However, I have also had basal cell cancer 3 times, treated with Moh’s resection each time. These have all been on my face, so scarring is an issue for me. This last one was diagnosed at the same time as when I started Hydroxyurea, and I had to wait 5 months before my counts were stabilized to have the Moh’s. The skin cancer was larger than expected and I now have a pretty significant scar on my face.
So…I am concerned that taking Hydroxyurea might not be the best option for me, if it is associated with increased and/or accelerated skin cancer. I have appointments with dermatology, plastic surgeon, and hematologist in the next month, and want to be prepared to have a discussion about my options.
I’m having trouble finding good information about the association between HU and skin cancer, and also with the Interferons and skin cancer. Can anyone provide insight or point me in the right direction?
Thanks in advance!
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Minify
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I am not aware of there being any link between the IFNs and skin cancer. The link between HU and skin cancer is well established. There is plenty of documentation of this risk in the literature. Here are just a few examples.
Hydroxyurea and Pegasys are both recognized as effective first-line treatments for ET. Pegasys is considerably more expensive than HU and may be more difficult to access. Note that both medications are used off-label to treat ET in the USA. We all react differently to each of these meds. Some tolerate one but not the other. I was unable to tolerate HU. PEG was much easier to tolerate and more effective. It seems that you have a strong case for being HU-intolerant. It is your prerogative to seek the treatment of your choice, Here is some information about the options.
Some MPN patients have reported great reluctance by their doctors to prescribe the IFNs. Unfortunately, some docs do not have much experience with the PEGylated interferons and are reluctant to use them. If you are not already consulting with a MPN Specialist, suggest doing so, here are the lists.
There is I m afraid a definite link between Hydroxicarbamide and BCC’s. I ve been on Hydroxi for 15 years and have had 3 on my face.
It can also cause cause ( after a long time) ulceration of the skin and pre cancerous marks called actinic keratoses - I have currently 25 on my face. These are treated with a fairly searching cream called Efudix ( it may have a different name in the US) I ve so far tolerated the cream well. Treatment lasts around a month.
SO and this is a very big SO for me ( I m 68) I have no side effects from hydroxicarbamide, I am very well, and so far ( fingers crossed) the drug does its job for me.
I haven’t had a BCC for 5 years ( again fingers crossed)
Bearing in mind that interferon also can have side effects I think I will stay with hydroxicarbamide for the time being and see how I get on.
I suppose at the end of the day I have to weigh up the difference being feeling tickety boo - and possibly more actinic keratoses……..hmmmm.
oh me too Louise,I have the Efudix seem to always have to use it.My face is scarred from the last carcinoma on my eyelid,I had to have skin grafts & lost the lower eye lashes....must admit I have lost my confidence,sure everyone notices the scar,always been proud of my unblemished skin & that most folk think I am years younger than my 83 yrs tomorrow!!Need anti depressants now to get thru the day,ashamed of that too,I have loads of art work to do just cannot get going.I guess you are braver than me,I hope so.
Wishing you Love & Best & the gorgeous grandchildren.Sallyxx
Hi Sally, you can’t be 83! Goodness thought you were my age!
As I said I feel really well, and I have no scarring as yet, but you know, I take the view that at 68, I’m old enough and wise enough to put how I feel well before how I look.
The dermatologist recommended factor 50 which I always use now ( factor 30 previously) and a large hat - I bought mine from solbari.
I also have twenty AK on my chest and oddly four on my bosom amd two under my arms, both areas which have never been exposed to the sun!
You know we all need to meet our condition, medications and and side effects head on and be aware. We re so lucky to have the treatments that we have. I’m so sorry that you have to take antidepressants, absolutely nothing to be ashamed of. Wish I lived next door to jolly you along!
I put my hands together every day to be honest.
Look after yourself Sally, maybe one of these days we’ll meet.
hello Minify, I am so sorry that you have been experiencing this, you definitely need to discuss alternative treatment options with your haematologist. The advice we have on our website about Hydroxycarbamide is: Changes to the skin Hydroxycarbamide can cause changes to the skin, such as skin darkening. It may increase the risk of skin cancer, so please take extra care in the sunshine. It can cause mouth and leg ulcers especially with long-term use.
You may also want to have a look at the recent vlogcast with Dr Butt who talks about the increased risk factors for skin cancers (non-melanomas) for MPN patients from sun exposure and some treatments, mainly Hydroxycarbamide and Ruxolitinib (dependent on dose and length of treatment). healthunlocked.com/mpnvoice...
I’ve had 4 MOHS surgeries in the last two years for squamous cells. The first two were while I was ending 4 years of Pegasys for my CALR ET. The second two were while I was on Hydrea. I’ve never heard of a need to wait for any blood levels before doing MOHS unless possibly you have uncontrolled bleeding then that would need to be addressed.
Im almost 65 and have been in the sun a lot mostly fishing for hours on weekends on a boat. Not much shade LOL. I used to get AK’s frozen off every year and started wearing long sleeve shirts while outside but didn’t use sunscreen much because I wanted the vitamin D and also believed chemicals in sunscreen were bad for you. Big mistake. I also took during these past 8 years or so BP meds which also increase the sensitivity of skin to sun.
And last but not least, I’ve had ET for at least 8 years and it too generates systemic inflammation based on my research.
Bottom line, MPN’s plus meds plus sun equals increased susceptibility to skin cancer IMO.. get a big hat, long sleeve SPF 50 shirts, wear sunscreen and try to stay out of the sun between 11 and four unless you are covered up well. For really intense summer sun I also wear a scarf like elastic tube around my face.
Ps: if the current UV index is higher than 2 you need sunscreen.
Hi, the dreaded sun problem. I have ET and take hydroxy and was warned about a slightly increased risk of skin cancer. I am 64 years old and have an active outdoor life so I did not hesitate in applying factor 50 sunscream to my face all year round. I get this on prescription because of the hydroxy and as a result of this I requested vit D on prescription (shy kids get nowt!) I have recently identified actinic keratosis on my forehead, was referred to dermatology where they prescribed a cream. It would be easy to blame the hydroxy for the AK but many of my cycling friends and horsey friends who have also lived an outdoor life and are of a similar age are also suffering form skin cancers or AK and do not take hydroxy. When we were young we did not wear sunscreen and it seems the effects of that catch up with us in later life. Now I cover up although I have never been a sun worshiper or had 'hot holidays'. You can buy clothing with UV protection in it and although long sleeves and pants in the summer does not sound appealing most of it is surprisingly cool (Mountain warehouse have quite a good range). Life has to revolve around the risk quite a bit but now I have educated myself it is not so much of a problem. Good luck on your mission.
Hi, I had a BCC removed last summer from ankle. It was present before I started HU but seemed to double in size after a year on HU. I had a dermatologist remove it, their procedure is quite different from just having a surgeon or plastic surgeon remove it. If I have another one I will simply have a plastic surgeon remove it and be done with it. A SCC is quite different and might be better treated with MOH's if it is on a sensitive area like the nose. I think I would still prefer a plastic surgeon for any skin cancer. This is just my opinion. Best to you in making your decision.
I have had two basal cells removed from the tip of my nose by Mohs. The first was done by a doctor in his 50s. It was stressful recovery, more stitches, etc. Second Mohs was done by a much younger dermatologist who had obviously learned newer techniques,….I actually left with steri strips that came off on their own in 2-3 weeks, The younger one also had done a lot of Mohs and surgeries previously. Mohs on the nose is a scary procedure,
It is often so hard to tell whether the side effects we experience are from the medication or would have happened anyway. I had a MOHS surgery on a basal skin cancer on my face three months ago. I have had two other basal cell cancers many years ago, prior to diagnosis or any medication, so it is so hard to determine whether or not it was caused by the medication. I was on hydroxyurea for 2 1/2 years, but have been on Pegasys for the last six months. On the other hand, my husband who is not on any medication and does not have an MPN just had Mohs surgery on his nose. What I do notice is that on hydroxyurea I felt more sensitive to the sun in that I didn’t want to be out in it. It felt too bright.
I sympathize about the scars on your face. I am not the least bit happy with the 3 inch scar on my right cheek right now. I did do a lot of research on scar care, and have been following the recommendations that others have made. I bought silicone scar tape and use it regularly.
it is certainly worth it to research other medications.
First, let me say thank you to all the helpful, informative and supportive responses. You all have strengthened my resolve to be proactive about my concerns with HU and skin cancer, and I plan to request to switch to Pegasys.
Although I had my share of sunburns as a child, I have been very cautious with sun exposure for 40 years (sunscreen, big hats, long sleeves, meticulous skin care). I think the combination of blue eyes, blond hair, genetics, and childhood sun damage have set me up for skin cancer. With my predisposition to skin cancer, I don’t think HU is the right drug for me, even though it has done a good job bringing my counts in line. I already have 3 big scars on my face (the last one 2.5 inches), and I don’t think I can emotionally bear another one. I fear being disfigured.
This last cancer grew very fast, from a tiny pinprick to 1.4 cm in 4 months. I think HU accelerated the growth.
I had Moh’s with each of my 3 BCC on my face, and each time had closure done by plastic surgeon. (In case you don’t know, Medicare pays for Moh’s surgeon to remove the cancer and plastic surgeon to close the wound). You get the best cancer removal with the Moh’s surgeon, and the best cosmetic outcome with plastic surgeon. It’s a two day event, the Moh’s done under local in the office, and the closure done the following day under general anesthesia.
This is a wonderful support and information group. Thank you all.
Hello Minify, I just posted myself about this very subject! I just had Mohs on my nose two days ago and wish I had lined up a plastic surgeon to close & reconstruction....I feel hideous but I'm trying to be positive since I'm very swollen & bloody yet.I took am on Hydroxyurea since my ET diagnosis in 2020-early 2021 ....I do feel this drug has brought on the skin cancer (basal cell), but I fear if I stay on it the chance of other cancers is likely so I am searching for what I might be able to take.
I've just come out of a heart attack (I'm female & just turned 69) with a stent put in for a blockage+ now on several meds & am worried about another drug causing more heart issues.
It seems to get our platelets in normal range we haven't many good choices 😞
I'd like to keep up with your changes and hopefully the new med will give you benefits and little to no side effects (including skin cancer, it's the worst imo)
Best of everything going forward, I'll be cheering for you!
Ps, I am light skinned & freckles, had red hair but hazel eyes & spent normal days as a child in the outdoors but did my best to avoid lots of sun just because I didn't want a sunburn 🌞
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