Hi. Update as promised. I got in touch with my MPN specialist feeling rather desperate after having had the SCC on my cheek excised. I’d followed up the research that people here had pointed me to on the link between rux and aggressive SCCs and sent some on to him
What I’d taken from the research was that if you had had a previous non melanoma skin cancer there was a significant risk of ruxolitinib triggering an aggressive SCC. As it had done in my case.
My MPN specialist clearly didn't know of the evidence for the link ( most of it is in the dermatology journals) and said ( in a phone call ) that if I wanted to I could stop the rux . The only alternative he could offer me was hydroxycarbamide ( hydrea). I mentioned interferon ( I knew that Pegasys was prescribed in the hospital) and was told that he didn’t think I’d be suitable and that it had it’s own side effects and that its effectiveness in MF was unproven I asked if he’d write his reasons down for me, as I’d heard that interferons did help MF ( Prof Kiladjian in Paris recently gave a paper on some very good results )
Today I got his letter, saying much the same thing as he’d said to me on the phone, and also suggesting that the dermatologist from OUH should see me.
I have a sister living in Paris who is helping me get Prof Kiladjian’s views as to whether its worth trying some form of interferon. Me, I’d rather have flu like symptoms than an aggressive SCC.
Rachel
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Rachelthepotter
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Sorry to learn about your recent troubles w/ SCC. I must have missed your earlier posts in this regard etc.
Quite interesting all the same. Having just completed a tad of very quick scanning on non melanoma skin cancers (SCC)...
I also found a rather interesting statement by Dr Srdan Verstovsek, MD, PhD, director of the Hanns A. Pielenz Clinical Research Center for Myeloproliferative Neoplasms at The University of Texas MD Anderson Cancer Center, who stated:
"...there have been incidences of squamous cell carcinoma, a nonmelanoma skin cancer, developing in these patients. These patients are treated with frontline hydroxyurea, which is well-known to cause these skin issues; second-line ruxolitinib can make it worse"
Recently, I was informed that I have three (3) minor concerns to do w/ skin cancers, and I find Dr Srdan Verstovsek's above statement most disturbing, as no one informed me of any such risks after having developed oral lesions whilst I was on HU myself in the earlier part of Post ET/MF management etc.
I now have an oral pathologist who would like to do a biopsy on my lower lip, (he says it will likely leave a noticeable scar). Another biopsy on the inside of my left cheek, where HU caused a previous mouth ulcer, and a further one on my lower gum where some loss of pigmentation has occurred... Not happy...
I see my new dermatologist again for my lower lip next month, (follow-up). However, I am not very keen to deal w/ the other two (2) events at this juncture. There does not seem to be any ill side-effects presenting themselves in relation to any of these events at the present...
As far as alternate treatments are concerned, I must confess that the idea of self-injecting Pegasys' once a week for the foreseeable future holds very little appeal either... It also requires refrigeration if one is planning to do any sort of travelling for any extended period etc.
Garry, another MPNer here in Sydney, is now taking Pegasys' w/ Ruxolitinib. Garry is Post PV/MF. He seems to believe that it is beneficial at this juncture, although it has only been a couple of months now, and he is complaining about breathlessness and anaemia... However, his bloods are slightly improved.
Every winter, I suffer quite badly w/ the cold. It is as if my bones can no longer hold the cold at bay, and I really do feel the cold inside my bones. I remember many years ago when I was somewhat exposed to the cold on a night watch sailing south in the winter through a horrendous gale. That feeling is the closest I can describe how this feels for me. I have just come off my pain killers again, and only just ventured outside after a long week's hibernation from the cold, (where I mostly stayed warm in my bed).
There are a few doctors down here who believe in the benefits of Pegasys' for MF, and with my platelets still remaining stubbornly high, perhaps it's time for me to further investigate this as a possibility too...
Best wishes Rachel and please do keep us informed...
Steve
REFERENCE
Aboul-Fettouh, Nader & I. Nijhawan, Rajiv. (2018). "Aggressive squamous cell carcinoma in a patient on the Janus kinase inhibitor ruxolitinib." JAAD Case Reports. 4. 455-457. 10.1016/j.jdcr.2018.01.001.
If HU is an option, you must have proliferative phase MF. I can tell you from personal experience that Pegasys works for many people who do not tolerate HU. Yes, there are side effects. I find the many side effects tolerable and the injection is easier than flossing your teeth. I started Pegasys in December and I am 69.
It just goes to show that expert is a relative term. Many hematologists just do not really have the level of knowledge we would all hope for. As you doubtless already know, skin cancers are one of the known risks of hydroxyurea too. There is plenty of research out there regarding the viability of interferon as a treatment option for myelofibrosis ncbi.nlm.nih.gov/pubmed/269... , onclive.com/web-exclusives/... , and a host of others.
I did it necessary to find a true MPN=expert doc to consult with regarding treatment for my PV. I found a great consulting doc on this list of patient recommended docs mpnforum.com/list-hem./ . Hope you find the expertise you need.
Hi Rachel, I’m sorry to hear about your problems. I think it might be worth considering pegasys interferon. I found it easy to manage and felt very well on it, my platelets came back to normal range very quickly, I was on 45 mcg weekly. Unfortunately after 15 months I developed a retinal occlusion and although it’s not clear what caused it, as a precaution I was taken off the interferon, now on Anagrelide and not doing so well. I had a minor stroke 4 years ago which led to my ET diagnosis and the stroke did damage my right eye, so that weakness might have contributed to the retinal occlusion. So despite my experience I would go back on low dose interferon if I could. I am very over sensitive to drugs and have to take very low doses. I have refused hydroxy because of familial skin problems. I hope you find a treatment that works for you.
Hello Rachel et al, I started Hydroxy in 1983 when I was diagnosed with PVR. It turned to MF sometime in about 2010 and I have been on Ruxolitinib since end 2013. The Hydoxy gave me lots of mouth ulcers and Roscea (if that is the way to spell it), which is a red face and lumpy skin and some blisters on the face. These side effects disappeared when I started to take Ruxolitinib, so that was great.
After about 2 years of being on the Rux I became aware of spots on my face that would not clear up. They were not itchy but when a spot kept growing and then started leaking pus I went to the doctor and it ended up with me having plastic surgery to remove a SCC on the right cheek and have a skin graft. That was in 2018. I later noticed similar on my head and it was the BCC and had it excised and a skin graft.
I had already told, and showed, my haematologist that in the later issues of the information paper which comes with Rux, there is mention "as certain types of skin cancer (non melanoma) have been reported". He reported it using the Yellow Card system.
I asked my Haematologist if it was possible to come off Rux because of increase of weight, and cholesterol, for which I am now on Statins and the skin problems, but he doesn't think anything will control the bloods so well, which is his main interest. I will investigate further.
Both skin grafts became infected so next time they will give me antibiotics as soon as I have the operation, it there is a next time!
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