AS previously mentioned my husband {He has PV and MPN} has for the past 6 years been on Ruxolitinib . He has now been advised that owing to quite a few skin cancers the last one being Squamous skin cancer with extensive scalp debridement. All in all in past 3 years he has had approx 7/8 basil cell cancers removed. He has now been advised that they are taking him off the Ruxolitinib which is such a shame as it has been a really good drug for him apart from the skin cancers. His pruritus which was extremely bad prior to Ruxolitinib has completely ceased and his bloods etc really good. There is good evidence that Ruxolitinib predisposes to squamous cell carcinomas.
He has been advised that he should start on either Busulfan or Pegylated Interferon. Hydroxycarbamide was tried for a few months prior to his commencement of Ruxolitinib which at that time had little effect to his pruritus.
He really now does not know how to proceed with these recommendations.
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waddles22
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Busulfan is considered a third-tier medication due to its adverse effect profile, including the increased risk of leukemic progression. PEGylated interferons would be considered by most to be a superior choice. While Besremi has a first-line indication for PV, I do not believe it is currently available in most parts of the UK. Pegasys, however, is available and is a very effective medication for many with PV.
I have been very successful using the interferons (Pegasys then Besremi) to manage PV. Using a very low dose, I am maintaining a complete hematologic response and have reduced my allele burden from 38% to 9%. Side effects have been minimal.
We are all different in how we respond to medications. Wishing you husband success in the next stage of his journey.
Many thanks Hunter for your reply!! Found your information very helpful. Besremi I believe isn't available yet in UK. We asked his Haematologist about it but he had no information.
Pegasys is very similar, in fact some people do better on Peg than Bes, allegedly it is only one molecule different, whatever that means in reality. With the info you have provided it would seem Peg would be worth a try, Bisulfan has more risks and isn’t used very often especially in youngish patients. Hydroxy can cause skin cancers, it’s well documented.
Perhaps the dose of ruxolitinib could be reduced. I have been on it for 6 years and had one skin cancer, and one suspect which was not. But the ruxo seemed to reduce my immunity, and I got sepsis, in April 2022, fortunately diagnosed early , so no organ or limb damage. I was taken off ruxo while being treated for Sepsis over 4 weeks but my platelet level hardly increased. All my blood factors seem to have remained stable, so hope the MF does not progress. I am 75, and also have AF.
Thanks Andrew husbands Rux dosage is at the moment being reduced over a period of 5 weeks and then he has been advised to stop taking. We will look at his blood results tho as you said.
Did the dermatologist offer any options that may help? There are drugs out there that we will puts pts on that can suppress or reduce the amount of skin cancers he is getting. Peg may just be easier to get and start. But I wanted to throw that out there if he gets started and has problems and wants to go back on JAK inhibitor. Soooooo many drugs cause skin cancer after you have been on them for long durations. If pts can stop them and change great but not everyone has that luxury so working in dermatology we try our best to help. Nicotimaide is a B vitamin he needs to ask about. There are topicals that he could use periodically, different procedures. I just want you to know if the new medication doesn’t work out, talk seriously with your dermatologist and oncologist. Make them work together!!!! In my world we are prescribing JAK inhibitors like crazy. And these folks will start to see the same thing as your husband in 7-10 years. And it isn’t only Jak inhibitors. I deal with knowing and managing this stuff everyday. Will be happy to help if I can. I am on Besremi and I am very happy. Still need some adjusting but I have only been on it a few months. But seen big improvement. Hoping next labs my platelets will come down then we will be in business.😀
Omg that is so helpful!!! Havent had much help with Dermatologist { at the beginning because of Covid] But now Haematologist is referring me to a new one. We are based in the Midlands in UK. After reading your Blog it gives us some hope. I know Hubby would much rather stay on Rux if he could have further help with his skin cancers. Initially Husband had severe itching one of the reasons for allowing him Rux!! within 4 weeks itching stopped. His worry is with starting new treatments this may all return. Thanks for your help.
hopefully you will get with a dermatologist that can help. As there are things you can do. And they can work with your oncologist to be sure they are on the same page. Hopefully it works out
there is no evidence that patients on Jak inhibitors in 7-10 years will have the same issues as this patient. If you have that evidence perhaps you can post it.
I am not very social media savvy so not sure how to post anything. However if you are looking for articles about increased risks of skin cancer and JAK inhibitors then look at articles on the JDD, American Academy of Dermatology and the JAAD, and many other dermatology journals. They may not have that exact time frame. I quoted that from a lecture I listened to at a conference that was put on by SDPA. The lecture was on immunosuppressive drugs and skin cancer. I of course paid close attention when she said Jakafi. So, you may not find an exact example of this among the references I listed. I also have experience prescribing these medications. I am not saying everyone who is on a JAK inhibitor after this period will make a skin cancer, but the longer you are on it the higher the risk. This is for all types of these medications even like HU. I see transplant patients every 6mos because of this. It is just something that can happen and needs to be watched. It is not a bad idea to see a dermatologist anyways but especially if you take one of these medications. Which their are so many that increase this risk. Hopefully this answers your question.
Ah so that is different to your previus post ie "And these folks will start to see the same thing as your husband in 7-10 years.". I note you now say now they may not. I pick up on these points you made because for those who are not so informed they can be quite worrying to someone on Rux thinking he or she is going to get skin cancers in 7-10 years because of the Rux when in reality there is no evidence that that will be the case, so its not great to be worrying people unneccesarily. Dermatologists dont understand MPN 's that well. Any MPN expert I have discussed the skin cancer issue with re Rux has told me it is not clear Rux is the culprit because most on Rux up until recently have failed on Hydroxy or have been on high dose Hydroxy for a long time, they reckon there is a fair chance its the long term high dose Hdroxy as opposed to the Rux. I suspect most dermatologists dont know that, certainly the derm expert ones I have consulted knew nothing about it, how could they I suppose. There are plenty on Rux long term with no skin issues. I have been on Rux high dose 6 years and see a expert derm every nine months , my skin is excellent, never need anything frozen. I have also had UVB light therapy daily for 10 years for itch , I was on UVB and Rux for 4 years , no problems, I have fair skin and my mother died of skin cancer. I think if Rux was so bad for skin cancer I might have seen at least blemish by now bearing in mind my history. I have not been on Hydroxy. I am sure you meant well by your post but I suspect it scared a few, we can see now they dont need to be so scared. I have heard that some believe Rux can bring skin cancers after a history of too much sun exposure alone but how can you prove that, as you probably know skin cancers can appear anyway 20-50 year later due to too much sun burning alone. We have enough to worry about already with MPN without the could be maybes that have no evidence.
thanks for that , as you can see they state the patients had previously been treated with Hydroxy or similar so it’s hard to say if it’s the Rux or Hydroxy or a combination. All I do know for sure is not all on Rux patients get skin cancers and that several experts including Clair Harrison (fairly recently) and Dr V have said it’s not clear which is the culprit. Their word is good enough for me until I see proof otherwise and that proof isn’t in what you posted yet.
Just like you say it doesn’t happen doesn’t mean it doesn’t. It is a risk just like all the other risks that come with Rux. Like PML, serious infection, etc which are listed as potential side effects of Rux. And if you look at epocrates or PDR skin cancer is listed. Just because there is a risk doesn’t mean you will get it. I start patients on JAK inhibitors and I have to counsel them about skin exams and skin cancers along with the other side effects. This is a risk. It is good advice for everyone on these medications to see their dermatologist which sounds like you do which is great. The point of my post was to help the person who is having these problems and is living it right now. But according to the adverse side effects that goes with this drug non melanoma skin cancer is listed. I am so glad to hear you haven’t had one and hope you continue to have good skin check ups!😊 I saw Dr V, he was my doctor up until he left to work for Kartos. So sad to see him leave.
Attached is the PDR adverse side effects of Rux, sorry couldn’t get all of them in the picture.
Well, you say the point of your post was to help the original poster, perhaps but the bit that stuck out to me is this you said "In my world we are prescribing JAK inhibitors like crazy. And these folks will start to see the same thing as your husband in 7-10 years." referring to the unfortunate skin cancers . I am sorry and there is no way of sugar coating it but thats irresponsible and inaccurate and unneccessarily worrying to anyone on Rux. As a presumed medial person you should know that some may have skin cancers and some will not , you cant say others will have the same as the persons husband in 7-10 years because you dont know that and its unhelpful. Sure Rux may bring out skin cancers in some but the MPN experts are not clear is it previous hydroxy or excessive sun exposure , no expert I have seen and I have seen a few has ever said in 7-10 years your going to have skin cancers.
It is listed in potential side effects on the Rux leaflet along with a zillion other potential side effects, more on this later but if you look at the Besremi or Hydroxy leaflet or even aspirin there are loads of potential side effects doesnt mean to say it will happen, you knwo they have to list every side effedct ever reported and remember there is a diffference between causation and correlation.. Its interesting you know Dr V. He was the first doc I consulted in 2017 to explore Rux for my PV and he remained one of my US haems until he left MDA. When I went to see him I had a list of every side effect and every thing that I was concerned about starting the drug , it was 92 questions I had for him. We went through every single one and have the list in front of me now. We covered every one on the list you provided and a lot more, he was patient and looked at every one , to almost every side effect on the leaflet he said he has not seen it . He was not concerned about skin cancer, just said check skin yearly which is good advice for anyone, the only ones he said yes or maybe to were possible weight gain, not on your list and probably the main side with Rux for most, PML, he said forget it, you can test for JC virus which is linked to PMl but he said dont bother, shingles yes 6% on Rux get it, not the end of the world, anaemia does not have to be with PV , just reduce the dose, simple, some manageable infections for some but not all. PV patients have a easier ride than MF patients, as for the concerns you listed re bad reactions if stopping the drug suddenly, why stop suddenly everyone knows to taper. In other words one has to weigh up the risk benefits for any drug and it is becoming more and more clear now that for the vast majority the benefits vastly outweigh the risks. Since Dr V moved on I have been consulting a new MPN expert in New York to see if I can improve on my current Rux treatment, he said he had a lot of long term PV patients doing very well on Rux showing a significant reduction in VAF , he urged me to continue as I was doing. The French Peg expert Kiladjian said the same thing to me at the recent conference in Phoenix, no body said by the wasy in 7-10 year from starting Rux your going to have skin cancers, it wasnt even mentioned.
I took the time to write this not to criticise your post but to reassure any patients reading it who may have been frightened by the comment you made re the 7-10 years, can you imagine less informed patients worrying about that. We have enough to worry about the factual stuff , lets try and keep it that way.
Re Skin Cancers and Sides on Rux below is the link for the leaflet on MPN Voice website. This is I assume written by Clair Harrison and her team. To be taken as likely correct I would say. It expalins about skin cancer and other relevant side effects, worth a read for a reality check. It seems to read pretty much as I posted earlier and seems to agree with Dr V's views.
"Non-melanoma skin cancer: Non-melanoma skin cancers (NMSCs), including basal cell, squamous cell,and Merkel cell carcinoma, have been reported in patients treated with ruxolitinib. Most of these patients had histories of extended treatment with chemotherapy medication and prior NMSC or pre-malignant skin lesions. A causal relationship to ruxolitinib has not been established. Periodic skin examinations are recommended for patients who may be at increased risk for skin cancer."
I agree with Hunter. I was put on Busulfan by a rather old-fashioned haematologist and it was awful. I stopped after a few weeks. I read it is only 'last stage' for the very elderly. I personally would not recommend it. I was extremely itchy on Hydrea after a number of years and Jakavi was a huge improvement. I too have similar skin problems, I'm just hoping it doesn't get bad enough to take me off Jakavi which is working well to control my PV, now progressed to Myelofibrosis.
Good luck! It is always a balancing act. I haven't tried the interferons.
Many thanks for your reply my husband might be "elderly aged 78" but he's a very fit older man. He would like to stay that way and not be treated with a older type drug especially after being on Rux and feeling so well. Difficult decisions now to be made. Not sure if he goes for interferons or not or maybe even ask to go on a lower dose of Rux.
it may be a good idea to get a second opinion from a MPN expert, as a Rux user and former Olympian itcher I can see the reluctance to give up Rux. Pegasys may work very well but for some it can make them itchier although for the fortunate that can be temporary. It’s also important to say that for some Pegasys can sort itching.
Would like to know if anyone out there is using Jakafi and Besremi together? I take 75mcg of Besremi biweekly and because my itching was intolerable, I have started with a low dose of Jakafi(10mg a day). I did hear from many of you that beta alanine was very good, but my MPN specialist wanted to go with Jakafi. I have been on Jakafi for 2 weeks now and my itching has subsided, about 70% gone, though because this is low dose it hasn't disappeared. I am concerned about side effects. I had painful toes while just on Besremi, but it seems worse now that I have added Jakafi. Auto immune response? Inflammation? I hope not. A little edema as well in my ankles, though that is after an entire day of walking and sitting. Would appreciate any helpful responses. Thanks!
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