Good afternoon
After five years of excellent treatment on Ruxonlitinib to treat myelofibrosis and recent surgery to remove an aggressive SCC from my forehead , I am under consideration to crossover to an alternative treatment , namely interferon.
I would be grateful for any accounts you may have on the side effect I experienced from ruxonlitinib and going forward the use of Interferon.
Thank you
I too had a nasty SCC on my face , and am taking Ruxolitinib for pmf. . Are your team suggesting adding interferon , ( ad in the ruxpeg trials) or switching you completely. I’d be interested to know where you are being treated. Regards
Rachel
A change to interferon , UCLH
What is an SCC? Was it caused by your current med? Hope Interferon is a better fit. Best ~
Have also been on Ruxo for two years, and have now got warts all over one hand, and diagnosed with a carcinoma on my cheek - having a biopsy this week, all presumably caused by the Ruxo.
No one has yet suggested a change of meds. I am also at UCLH. Skipper L
Hi. As you’ll have seen , I have similar problems. I’m also at UCLH: which consultant are you under? Are you also being seen by the dermatologists?
I am under Jon Lambert at UCLH - who are you under? I have seen many different consultants over the last few years, and since lockdown have only had telephone consultations. I have monthly transfusions on the 4th floor at Macmillan Cancer Centre. I a, however, seeing a private dermatologist who I have seen in the past.
I’m under Jon Mortimer too: and I’ve also seen other NHS MPN specialists. I’m seeing an excellent derm at UCH , Elizabeth Kulakov topped up with occasional private visit to the maxillofacial surgeon - Carrie Newlands- at Guildford who first excised the face cancer. If anyone ever needs facial surgery she’s kind , helpful and a Good Thing.
No - I am under Jon LAMBERT - but it is such a large department. I did have a basal cell carcinoma some years ago before I went on to the Ruxo - so I can’t blame this new one totally on the meds. Biopsy next week…..
I do not have MF, nor have I ever taken Rux. I am also not a physician. My understanding is that interferon treatment (Pegasys, Besremi, etc.) targets the disease itself and leads to a reduction in mutant cells (hence often causes a drop in mutant allele burden) and can slow/stop disease progression in a good percentage of patients. I have heard that Rux, on the other hand, is better for treating the symptoms, but does nothing to actually stop the disease since it only inhibits the JAK2 protein but does not eliminate the cancerous cells like interferons do. It seems to be a trade-off.
How interesting that you are at UCLH : I’m now being treated there too. My consultant put me on a clinical trial to try to find med that wouldn’t make sccs worse, it meant coming of rux completely for 4 weeks before starting the new trial drug. Couldn’t hack it. Went back to rux. What form of interferon - pegasys or besremi?
Is there an alternative to drugs for PV?
Alternative parts of body for a venesection? 
Has anyone tried alternate anti-inflammatory agents for MPNs?
Raised platelets, JAK 2 Alternative drugs to Hydroxy..
Change from Hydroxy to Interferon
