If you take ruxolitinib do get regular skin checks.

[Gipsy123]

ttps://mpnresearchfoundation.org/news/skin-cancer-awareness-month-non-melanoma-skin-cancer-and-mpns/

Skin Cancer Awareness Month: Non-melanoma skin cancer and MPNs

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May is Skin Cancer Awareness Month. Research shows a link between skin cancers and MPNs. Diligent screening is crucial for those living with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF).

Skin cancers, particularly non-melanomas, offer an example of how quickly and impactfully research can move to action that saves lives.

A recently published study in the journal Blood (Alex Rampatos et.al) followed 90 MPN patients who developed non-melanoma skin cancers (NMSCs) while receiving ruxolitinib therapy, across 18 treatment centers in the United Kingdom. What was learned can have an immediate, potentially life-saving effect on skin cancer prevention and outcomes.

In this specific study, NMSCs were the primary cause of death in 34.3% of patients, which exceeded the percentage of deaths due to myelofibrosis (MF) progression. It is still unclear exactly why these skin cancers are more insistent in people with MPNs; only additional research will drive us deeper into the answers. The authors suggest it may be related, at least in part, to ruxolitinib’s immunosuppressive activity.

In conclusion, Alex Rampatos et al stated, “Our study highlights the aggressive nature of NMSCs in ruxolitinib-treated patients with MPN[s], the importance of counseling patients about the risk of skin cancer before starting ruxolitinib, and a requirement for close dermatological monitoring on treatment.”

[lizzziep]

I was on Rux previous to Momelotinib, I’ve just had a “lesion” removed. When I showed it to the haematologist he dismissed it as a cyst, practice nurse at GP said it was an infected spot, eventually saw a GP who said it needed removing asap! Which was done last week.

Dermatologist and GP said it was probably due to medication. Haematologist still in denial! It was the same a few years ago when Hydroxy caused non healing ulcers on my feet. Haematology said it wasn’t medication, dermatologist said it was and insisted it was changed, it was to Anagrelide and the ulcers cleared up.

[ainslie in reply to lizzziep]

The standard of care your getting seems a bit alarming, it’s common for Hydroxy to cause ulcers on legs and feet, it’s great you have Guys to call on when needed though.

[lizzziep in reply to ainslie]

It’s through this forum that I now have the courage to question my local haematologist, he knows I query things with Guys and he doesn’t like it! If he was more knowledgeable I wouldn’t need to.

He has to cover all types of blood related illnesses so I can understand he doesn’t have time to specialise like Guys, but he should be more open to accepting information from them and he must know about skin problems with the various drugs.

This forum has been, for me, literally a lifeline!

[ainslie in reply to lizzziep]

Well done 👍

[Gipsy123 in reply to lizzziep]

Its worth establishing who decides what in shared care: I’m having problems with mom and was told in no uncertain terms by Guys that now I had a local haematology team dosage issues were for them, as they were quite able to make those decisions. Which may well be a compliment to my local haematologist but was unexpected.

[lizzziep in reply to Gipsy123]

That’s the opposite to my case! When I asked Guys for advice on dosage they contacted my local haematologist as a matter of urgency to change what I was talking. Maybe they know which haematologists are capable of making the right decisions? I don’t think mine is! 😱

[Gipsy123 in reply to lizzziep]

I’d assumed that till I’d stabilised Guys would make the decisions. Seems not so. But local haem at East Surrey whom I’ve seen once is good. Next apt not long now- so I’ll wait till then to discuss lower dose pills. In the meantime I’m taking the 200mg pills on alternate days ( one option Prof H suggested) at night. So far so good. Living on my own, can’t risk dizziness and falling. Its all about quality if life.

[Bullace]

Thank you for posting this. I was on Rux for PMF for about 10 years and had several basal and squamous cell carcinomas removed from my face. I recently changed to Fedratinib as Rux was no longer working but had a very nasty large lesion removed from my face last year. I now see a dermatologist every 4 months for a check. Regular checks are very important for any of us with sun damaged skin and an MPN. Hilary

[ainslie]

for anyone I think it’s a good idea to have skin checked at least yearly, even more important for those with MPN and especially if on Hydroxy or Rux.

What Rux does or doesn’t do re skin cancers is a bit of a puzzle as far as I am concerned. I’ve read the papers highlighting the concerns. In my case I am on Rux high dose for PV, I started 2017, prior to Rux I did UVB phototherapy daily for about 10 years, I have fair skin and my mother died from melanoma. Yet my skin is perfect, I get it checked every 6 months by a private dermatologist, I’ve had maybe two or so minor sun damages frozen in last 10 years. I see a well respected MPN expert at Mount Sinai, I asked him if Rux caused skin cancers, his answer about a year ago was no, this surprised me, he reckons the cause is previous sun damage or previous hydroxy use. I don’t know who is right, certainly most go on Rux after hydroxy. Maybe it’s the effect of previous sun plus hydroxy plus Rux, I don’t know yet, I am not sure anyone does for sure yet.

Since diagnosis in 2010 I never sunbathe, on holiday, hat umbrella, long sleeves, avoid high UV times of day, factor 50, I have a UV meter to check it when on holiday. I havnt been on Hydroxy.

My derm says most skin cancers are fixable if caught early, so that’s the answer there, check, check and check your skin by a good derm.

[Rosie188]

Hi, how do I get an annual skin check in the uk? When I had a potential melanoma it took 4 weeks for a GP appointment and then at least 3 weeks to be seen by a dermatologist. 6 weeks for an urgent pathology report once it was removed! Luckily it was not malignant just needed removal.

[Gipsy123 in reply to Rosie188]

Check your own skin, and then wave the research article at yr Gp. Once you are in a hospital system they’ll recall you now and then. No, the notion of an annual blood test or annual skin check hasn’t happened yet in the UK health services.

[KLCTJC]

As most people know I am. Derm PA. I am in support of skin cancer screens.😊. I think pending on sun exposure, age, medications, and family history can determine how often. But seeing dermatology is always a good idea.❤️

[EPguy]

Here is the full report:

ashpublications.org/blood/a...

Skin cancer is clearly a factor for Rux as it has been reproduced consistently over years

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Median daily dose was 22.5mg, not high by Rux standards.

"Prior hydroxycarbamide use appeared to have a protective effect in the SCC subgroup (hazard ratio, 0.34; 95% CI, 0.14-0.79; P = .0088 ...possibly skewed by an increased awareness of skin cancer risk and closer monitoring in such patients." This is anti intuitive but a one third risk seems more than bias, hopeful this will get more follow up.

MPN type: 79% MF, 19% PV

In another study -" ruxolitinib had a hazard ratio of 2.69 for NMSC development"

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The main report does not separate PV from MF, but the image here from the supplement does by some criteria. PV is about proportional to its % in the cohort for aggressive cases but over represented in the 'two diff types of NMSC' .

They didn't find much correlation to predict NMSC hazard. "Multivariable analysis did not reveal any significant factors predictive for overall survival " This analysis must be excluding the very large survival protective effect found for prior HU use.

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"Our findings for ruxolitinib-treated patients with NMSC regarding metastasis frequency and rate of poorly differentiated pathology mirrors the situation described in solid organ recipients receiving immunosuppression" Organ transplant is usually strong immune suppressors.

PV vs MF