Contacting on behalf of my 78 year old husband . He was diagnosed with Polycythemia Vera MPN and in July 2017 he eventually was prescribed the above drug. He has been a different person since being on RUX and it has to him been a great success. In the past 6months plus, he has had 3 skin cancers on his head and face. { A few previous too} The one on his head which was quite big and deep and after 6months is a few weeks away from healing. Brilliant care with the NHS. Surgeon is recommending he now speaks with a oncologist to talk about possible radiotherapy on this area of his head. He is not keen to have the radiotherapy as he believes it will possibly cause more problems with the RUX and he doesn,t want to stop taking the drug. He already has poor concentration and obviously the skin cancers since having the RUX. I think he would prefer a regular surveillance of his head for further cancers instead. Anyone have any similar problems that could help him with his decisions
Ruxolitinib and Skin Cancer: Contacting on behalf... - MPN Voice
Ruxolitinib and Skin Cancer
It is all about the risk/benefit analysis. I do not think there is a black and white answer here. Suggest getting a second opinion from a MPN Specialist in this situation. Most doctors have little experience with RUX. Best to get MPN-expert input on this issue/ Perhaps a consensus can be reached that will help make a decision. mpnforum.com/list-hem./
Hi Waddles22, I am sorry to hear that your husband is having this problem, it might help you both to have a look at one of our vlogcast videos with Dr Nauman Butt, Consultant Haematologist at the Clatterbridge Cancer Centre, Liverpool, 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...
Maz
great info in this vid, the only thing I would add to this in the section where he talks about removing skin cancers with surgery if it’s caught early enough they can use a blast of a spray type device to freeze off any sun damage before it becomes a problem, ie avoiding surgery hopefully,this is done in the office and takes seconds. So my advice to anyone and especially if on HU or Rux or previous issues is to get your skin checked regularly, we can do it ourselves a bit but we can’t see everywhere but a nurse or doc or preferably a dermatologist can.
I've been on Rux since 2017 and had one skin cancer on my ear which meant having a piece of it cut off, but living in Wales I tell everyone I got bitten by a dragon 😀
sorry to hear about the skin cancer. You say he is not keen to have the radiotherapy in case it interferes with the Rux. Best to check that with an expert but I can’t think how it would interfere with it. Has your husband had exposure to a lot of sun or previous HU use.
The duty is out a bit on whether it’s the Rux or previous HU or sun that is the culprit and maybe Rux is part of it as opposed to the cause. I am on Rux for PV and my mother had serious skin cancer so I researched carefully if Rux causes skin cancer, having discussed it with several experts it’s not clear what the culprit is, or that was the case the last time I looked. The general view was suspicion about previous HU use.
From 2010 to 2020 I had UVB light therapy daily for bad PV itch, from 2017 to now I am on Rux, I get my skin checked every 9 months and dermatologist says it’s excellent, so far it seems Rux is not causing any issues at all, I have not been on HU previously. Usually by the time people start Rux they have had previous high dose lengthy HU use.
I should also add that I avoid direct sun exposure, I go on sun holidays a lot but keep in shade or umbrella, hat, factor 50 good quality sun lotion La Roch do good one, no sun bathing, cover skin, still can have a great holiday. I have light skin and burn easily so doing well skin wise so far. I also bought a UV meter which is very useful to check how high the UV is at any time of day. UV level is not necessarily proportional to temperature, for example where we go in Spain the temp can be 25 Celsius in December and the UV at midday maybe 4 or 5., ie quite low, but if we go in May the temp can be still around 25 but the UV can be 11+, ie highly dangerous, I don’t think most people realise this, when I see people sunbathing all day at UV 11 it’s scary.
I think it like Hunter said risk vs benefit. Most skin cancers are easily treated. However if he is making more aggressive squamous cell carcinomas that can metastasize he is going to have to consider an alternative. I have many patients on JAK inhibitors and started 2 yesterday. It is a risk, and especially after 5-8 years. I think he needs to talk to his doctor. He maybe able to have a drug holiday if it is safe then restart it will depend. But I would talk to the MPN specialist and the oncologist that would treat this skin cancer since it sounds like dermatology is referring him out.. Hope this helps.
Hello,
If the skin cancer was deep on his head there could be more. It only takes one cell to spread. My uncle had skin cancer on the top of his head and passed away from it miserably even after having it cut out. A little radiation will give you piece of mind.. I hope you receive more comments so you both can make an informed decision.
Best wishes to you both!
Hi. Yes, I had skin cancers on my face ( sarcomatoid sccs) which developed when my rux dose was upped from 15 mg bd to 20 mg bd. Nasty. I had two excisions for recurrences and was eventually persuaded to have radiotherapy. A total of 50 greys. No real evidence one way or the other. Radiotherapy on face quite intrusive and left me with blocked lymph drainage. No idea even now whether it was the right thing to have done. Which hospital is doing it?
Rachel, sorry to hear about the sccs, do you mind if I ask you if you were on high dose HU for a long time prior to Rux or were you exposed to a lot of sun in the past. There is a debate about whether its the Rux on its own or the combination of previous HU or sun exposure plus Rux , I am on Rux 20+17.5 and no probs so far.
Probably combination of sun whilst in forces years ago and the Rux.
only just saw this - sorry for not responding earlier. Unusually I’d only been on hydrea for a very short time before rux. Cancers cane within a few months of dose increase of rux from 15 mg bd to 20 mg bd.
Many thanks to you all for your replies. It does help listening to other people and what they have been through. I think once he has spoken to his Oncologist he will then speak to surgeon who did the operations and especially his Haematologist who has been very supportive. Then he will have to make a decision
Ruxolitinib and side effects.
Recent visit with my MPN Dr
