Hi. I’ve just seen that ruxolitinib has now been approved for PV, which is great, BUT do take care of sun exposed skin. Rux can trigger really nasty sarcomatoid squamous cell cancers , as it did for me, and having an aggressive dermatological condition to deal with (2 excisions, I false alarm excision, radiotherapy, and associated swelling of face -not fun) as well as the PMF was a nightmare I could a have dine without.
There’s now research, mostly in the dermatology literature, pointing this out.
So, if you are in rux, any lesions need to be checked out ASAP. Don’t usually post photos, but this is what the scc looked like before it was removed for the first time It grew fast.
Rachel
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Gipsy123
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Good advice , it's the main reason I haven't pushed for the rux. I'm staying on the hydroxycarbanide, better the devil you know. I hope they caught it early and your recovering. All the best john
I was diagnosed w/ a BCC [basal cell carcinoma] on an relatively protected [minimally sun-exposed] area of my face after only about 6 months on HU.
I have been wearing UV-blocking sunglasses and a wide-brimmed hat inveterately whenever I'm outside since the late 1980's after I had a macular degeneration-scare in my early 30's,
Thus, all 3 of the dermatology MD's I saw for the BCC [my routine dermatologist, and 2 Mohs-specialist dermatology MD's] thought that even my HU exposure was relatively short, it nonetheless very likely contributed significantly to the BCC's development.
I’m starting rux soon. I’m not a sun worshipper, I live in the north of England anyway, however we have been getting hotter summers, I always use sun screen but I’ll be extra careful in future.
Thanks for the 'Heads Up' - no pun intended. Having just changed to Rux they do give the warning to watch out, as they did when I started Hydroxy 9 years ago. I was consoled when they said that the the possible cancers were treatable, still a good idea to keep a good watch.
If the side effects of Rux are not acceptable then I was told I could always revert to Hydroxy or a different treatment.
Sorry to hear about the skin cancer, can I ask you if you were on Hydroxy prior.
At a recent consult with an expert at Mount Sinai I asked him if Rux caused skin cancer, he said no it was caused by previous Hydroxy use and too much sun. I have heard that from other experts also. Personally I am not sure and will ask my expert again at a follow up consult. I am on high dose Rux since almost 6 years for PV. Prior to Rux I was on daily UVB for itching , my mother died from melanoma spreading to brain so I may be genetically predisposed to skin cancer and have fair skin and blonde/reddish hair (before grey). Yet according to my dermatologist my skin is excellent, in the last 10 years I have had minor skin damage (benign) frozen off maybe 3 times. However I have not been on Hydroxy and havnt sunbathed in 10 years, use 50spf if in sun and stay under umbrella and long sleeves wide brim hat etc etc. Personally currently I am not certain Rux causes skin cancer but we do know Hydroxy and sun can. I hope you get it sorted nicely
thank you for the paper, having skimmed it it reads that these patients developed skin cancers while on Rux ie 17% , the million dollar question (and I am not quite certain of the answer yet ) is whether is is cause of correlation, if you look at case one he had a sensitive skin type and was on Hydroxy at 2g a day prior to Rux for 10 years and a lot of sun exposure. The paper was written by dermatologists who will report what they find skin wise but if it were written by haematologists it may have read different (my speculation only) in that they may comment on whether it was the Rux or Hydroxy or Rux plus hydroxy was the cause. I suspect there might be a bit of the latter but most expert haems I consult or read about or listen to at conferences tend to blame the hydroxy,
I’d been on minimal hydroxy for a few months. SSCC developed very fast when rux dose was increased from 15 mg bd to 20 mg bd. - to alleviate fatigue(!). I’d had sun exposure in Australia, tho I’d never sunbathed, and always stayed in shade. If you are a fair skinned red head then your risk is increased. Rux is interesting stuff: unlike most chemo drugs which cause hair loss, rux increases hair growth.
It is and it isn’t- had that discussion with Prof Harrison. Not really main point. Does hydroxy cause hair loss? Anyone know abt the other recently approved MF drugs? Just keep an eye on your skin, especially if you’ve ever lived in a hot country. Women tend to get skin cancers on face/ cape area/ lower legs. Blokes with male pattern baldness need to add top of head.
Was horrified to see rux applied topically being recommended for treating male baldness- maybe the topical dose is very low.
Rux is also applied topically for psoriasis which of course can be anywhere. I have oral rux for about 4 months. Hard to tell if it’s been effective for my psoriasis yet, butilvein hope 🤞
risk is increased with anyone with red hair/fair skin not on or on Rux with sun exposure, must look on top of my head see to see if any more hair, I dont think so :-), I think they use it for certain types of alopecia but not common male pattern baldness as far as i know?
Hello Gipsy123 et al.I was on Hydroxycarbamide for 30 years for PV and had no skin cancers. In 2010 I had my second BMB which showed my blood had turned to MF. I've been on Ruxolitinib since Nov 2013. In 2018 I started having various skin cancers, resulting in 3 skin grafts, and a skin flap, which is much neater then a graft but they all are a nuisance whilst they are healing. My Haematologist now concedes that Rux is the most likely causes, as it was 5 years after starting Rux that the skin cancers developed.
Now I normally use skin protection off 50SPF on my head and face and always wear a thick cap.
Do your best to protect yourselves from the sun, if it ever shines again!!! 😉
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