Hi. I'm having a grim time at present, as the increased risk of aggressive skin cancers triggered by the ruxolitinib I’m taking ( was inc to 20mg bd at end December to help the fatigue ( it didn’t) ( now back to 15mg bd) haunts me. I’ve already had one SCC excised from my face, as I’d posted, and a BCC taken off my back. I’d thought that reducing the rux and adding in Pegasys would make sense, My blood counts are stable: main issue was fatigue. ,
My haematologist doesn’t see it that way, despite the ongoing ruxopeg trials ( not at his hospital).
Has anyone here with MF tried reducing rux and adding Peg? Are there any haems on the UK who do this? If my Oxford haem had an apprpriate
second opinion he might be prepared to consider it
Prof Kiladjian in Paris ( who runs the ruxopeg trials) has no apts till 2020 - my sister lives in Patris and did some research for me.
Suggestions of UK haems to approach would be welcome .
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Rachelthepotter
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Obviously, our doc's are down under, however, there is always email of course... The world is such an increasingly smaller place w/ the advent of the Internet etc.
Best wishes Rachel...
Steve
PS. I will try to contact Garry and alert him to your Post too...
Thanks, Steve. I’ll have a go at re posting on Mates. Sometimes the tchnology defeats me. If I can’t, I’d welcome the name of the dr in Aus who is using rux peg. As you say, no need to even be in the same hemisphere for a second opinion these days.
Just to say i’ve managed to register and repost on the MATES site- what would help a lot is the dosage schedule for coming down in rux and adding the pegasys.
Hi Rachel
The threat of more skin cancers is very worrying, I too have had a BCC on my chest and then an SCC on my nose which I had radiotherapy on last year. I'm just on Rux too but have never had the combo drugs mentioned as an option as the Rux does seem to suit me (but at what price?). What worries me is that the dermatologist doesn't seem to acknowledge the connection so I wind up looking like an over-anxious patient (which I am I guess!) I wish they'd all talk to eachother or give us definitive information to show the other consultants we unfortunately have to deal with. I've just found out, rather clumsily by my GP, that I have heart failure, which may or may not have been caused by cardiotoxicity, (Google search) chemo drugs can cause it! It's a wonder we stay sane trying to keep all this together and understand the long medical terms. Still onwards and upwards, this is certainly a lesson for "rolling with the punches"!! I am beginning to wonder which "ologies" I have yet to explore! Take care and I hope you get some answers soon, Christine
I’m so sorry to hear about your issues. I don’t know the answer to your question about Ruxolitinib/Pegasys. I am also a patient at Oxford with Professor Adam Mead and my experience of him has been excellent. Earlier when I had been researching where Pegasys was available, Leicester Royal Infirmary looked like a possibility for me, there are others on this site who are treated there and might be able to help. Sorry not to be more helpful. I wish you better health. Tessa
I have reached out to try to contact Garry tonight, and unfortunately, he is not responding to me as yet... He might be out to a meal or some such etc?
Presently, I only know a little of what he is doing w/ the RuxoPeg, and Garry is certainly the best person to really discuss this with of course...
However, he has been on it now for at least a 2-3 months... (if I am not mistaken?). His Rux' was lowered a little before he commenced the Pegasys' in combination.
The dosage increases of Peg, I believe, were quite rapid at first, and then they were tapered back a little...
As I am not 100% on those amounts, probably best to wait for Garry...
Hopefully, Garry will respond for you sooner rather than later...
Quick update... I finally managed to contact Garry, and he messaged saying that he would endeavour to respond to you tonight, Down Under' time... of course...
I must admit my husband has been on Ruxolitinib for just 2 years now and he has had 3 skin cancers since and possibly one more. But he was so poorly before Ruxolitinib and it has been such a great success for him. His life is so different but he has a amazing consultant who really gives his time and care
I just wanted to say that I had carcinomas when on H U,the one on my face being the worst,but back,legs ,chest and other skin nasties,all over.
Now on Rux my dermatologist is quite sure all these skin cancers are because of any of Meds we take for M P Ns. If we are fair skinned we must take extra care in the sun of course.Sorry I can't help with your question,but sincerely hope you get answers and feel better in yourself very soon.Skin problems are depressing and confidence disappears.Very Best to you,Sally
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