Hi. I’ve just been informed that that the sarcomatoid scc that I’d had excised from my cheek on Nov 6 th was indeed a recurrence of the same type that I’d had before, and it has a poor prognosis. Radiotherapy on my face might help prevent more spreading. Or might not. The new lesion was described as poorly differentiated, the level of invasion was Clark 4, and likely metastatic. The ‘hens teeth’ comment was by the surgeon before he had the biopsy results: - he thought it was unlikely to be a recurrence because sarcomatoid sccs are as rare as hens teeth. He hasn’t actually spoken to me since: he left it to my ( new, and much more patient centred) haematologist to break the news. Not good practice.
So I’m more concerned than ever to try to find an alternative to ruxolitinib, or an adjunct that means I can reduce the dose. Pegasys or Ropeg might now be available: don’t know. I see that Fedratinib has been approved : anyone here had any experience of it? Its supposed to be less immunosuppressive than ruxolitinib - or is that one of the others?
My myelofibrosis is still Inter 2, and my new haematologist ( in the same hospital ) is going to arrange another BMB and genomic analysis. But it won't happen till the new year, and these new sccs grow horrifyingly fast. May have metastasised elsewhere in body. Feeling grim tonight, but not giving up yet. I’m due for a unit of blood on Friday, and that’ll make me feel less fatigued and better able to cope.
Could really do without this.
Rachel
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Rachel, sorry to hear of this news. Please know that so many of us are sending your prayers and positive affirmations. I know nothing about Fedratinib. I was on Ruxolitnib but was getting infections. I am only on anagrelide now and seem to be doing well. Do you have an immunologist in your area who may be able to evaluate your immune system? I am on the West Coast of Florida and have a very good immunologist. Deep in my heart I want so much for you to do well. Please keep in touch.
Hi. Thank you so much for your kind thoughts: not sure what role an immunologist might play in MF . Doesn’t seem to be on offer here ( UK) Interested by anagrelide helping when you came off ruxolitinib: my main abnormality was high platelets, but tho hydrea brought them down I felt awful on it.
The ruxolitinib does seem to have some sort of non measured effect that makes you feel better. Prob to do with cytokines.
How awful for you Rachel the MF is enough to handle. I wish you well and so hope they come up with an alternative for you. My haem called me in for a discussion about the Fedratinib trial but the only criteria I passed was my age!!!! The rux is keeping my bloods in order and my fatigue levels are fine so I only got one out of 4!!!! She's appealing the criteria on the grounds that it's only the rux keeping me in good health. I'll let you know if I get on it. People say why would you change drugs when you're doing OK but I've been on rux for 7 years and my spleen is very large. I take 50 mg a day and have been for a long time now. Oh well I'll see what happens!! Have you discussed alternatives with your haem? I wish you well and so hope they come up with an alternative asap.
Thanks, Pat. At the moment all that was on offer from the Haem 1 who was the person who bumped up the dose of and then closed his eyes to the skin lesion) was coming off the rux entirely and having nothing, or going back to Hydroxyurea ( HU) which I ‘d not been able to tolerate before. Haem 2, my new Haem, is much more patient oriented, but not really that aware alternatives. Yet.
Can you PM me the name of your haem? And what are the criteria?
Apologies for the delay I put away the contract I was given so safely I couldn't remember where it was!!!! It doesn't state the criteria on there but I needed to pass 4 of the criteria to be considered. I passed on age - 69. Also needed was low blood levels but mine have been 10+ for 2 years now. She also mentioned fatigue levels need to be very low which I don't feel mine are. I can't help you further I'm afraid as I just didn't absorb what she told me and assumed it would be on the info I was given. I've noted from all your posts you're very well up on your illness but I'm afraid I just plod on I do read this forum but nothing else. I've been so very lucky so far with just a very big spleen that's very annoying. The point of me taking Fedratinib was to hopefully shrink the spleen. At the back of my mind is also the worry of how long will rux be of benefit as I've been taking it now for 7 years and am on 50mg per day. I see a haem in Dublin which is our centre of excellence but is 4 and a half hours away!! I also have back up at my local hospital and have known the same 2 haems throughout which is fab. I haven't heard anymore but she will definitely let me know one way or the other if I get accepted or not!!! Did you read the post from cja156 (think that's right) she's on this drug but the side effects seem pretty awful. This is such an odd illness as it affects us all so differently i'm still unsure if I will/will not take this new drug. I wish you really well Rachel as I can see you sure have had some problems. Continuity of care with a great haem means everything.
I’m so sorry hear that you are going through all this. How many SCC ‘s have you had ? I didn’t realise Rux can cause skin problems, I thought it was just Hydroxy.
Two - This is a recurrence of the one that was taken out in May. Not a common side effect, but very nasty when it happens. If you have already had a skin cancer caused by sun exposure, then you are at risk. Mine was triggered by a dose increase in the rux - from 15 mg bd to 20 mg bd.
Really sorry to hear of your struggles and wishing that they might resolve themselves sooner rather than the cliche etc...
It is really interesting, in my view, that you seem convinced that the problem is being caused by the Ruxolitinib, and not the HU which was in use prior was it not?
As you and I have discussed previously, I had real problems on HU with all sorts of bleeding in conjunction with my use of low dose aspirin. However, the leukoplating of my lower lip, and the stubborn mouth ulcers I acquired on HU, (well before Jakafi), are still with me, just somewhat less virile than previously under the HU, in my view...
Then, there was the HU side-effects of mental fog and fugue that almost instantaneously disipated upon commencement of Jakafi...
Rachel, not sure why, but my Methotrexate (MTX) trial is continuing to be of assistance in my own case, and it will be interesting to see if it continues to do so...
Last reading: Platelets *823
Hgb: *124
Hct: *0.37
RBC: *4.0
WBC: 5.4
RDW: **17.2
I am still anaemic most of the time, and waves of fatigue seem to be more evident of late... but I just keep trying to do my Fundraiser and cycling ever longer distances in anticipation etc... Some days I am so terribly slow...
Here is an extract that I posted some time ago on MATES:
"The ulcers are caused by a reduction in cell viability that occurs when hydroxyurea disrupts the S phase (synthesis) of the cell cycle. Hydroxyurea inhibits the synthesis of DNA, which causes damage to basal keratinocytes and hinders the production of collagen. Inflammatory mediators that are derived from platelets and related to myeloproliferative disorders may play a role in causing the ulcers. Treatment involves stopping the hydroxyurea therapy and applying a moist wound dressing. The ulcers do not respond to conventional therapy alone and will not heal without cessation of hydroxyurea."
There are a couple of other articles referring to aiding the healing of HU Leg Ulcers:
However, the 'Link' above from the Fourth Item below is quite damning where HU is concerned, and compelling, in my view when read in conjunction with all of the other articles as well...
Keep us Posted Rachel as things unfold...
By the way, how long have you now been on Jakafi, and at what dosage?
I am going on three (3) years now mainly between 20-25mg bd... While it has not always kept my platelets suppressed it has helped in a great many other ways, and hopefully will continue to do so...
I believe that Fedratinib is approved in the USA, but that its greatest help is for those with a lower platelet regime, but I might be mistaken... (?) Perhaps pose the question through Maz to Prof. Harrison?
It's a bother that you must wait until the New Year for your next BMB screening... Hope that pint of plasma helps Rachel...
Very best wishes
Steve
REFERENCE
Antar et al 2014. "Successful treatment of hydroxyurea-associated chronic leg ulcers associated with squamous cell carcinoma." Hematology/Oncology and Stem Cell Therapy: Vol. 7, Issue 4, (Dec. 2014), Pp. 166-169. doi.org/10.1016/j.hemonc.20...
Dissemond, J., & Körber, A. (2009). Hydroxyurea-induced ulcers on the leg. CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne, 180(11), 1132. doi:10.1503/cmaj.081042
Stagno, F., Guglielmo, P., Consoli, U., Fiumara, P., Russo, M., & Giustolisi, R. (1999). Successful Healing of Hydroxyurea-Related Leg Ulcers With Topical Granulocyte-Macrophage Colony-Stimulating Factor. Blood, 94(4), 1479-1480. Accessed July 06, 2019. Retrieved from bloodjournal.org/content/94....
Roberto Latagliata et al. 2012. "Symptomatic mucocutaneous toxicity of hydroxyurea in Philadelphia chromosome‐negative myeloproliferative neoplasms†The Mister Hyde face of a safe drug". Cancer, Vol.118, Iss2; 15 Jan. 2012: pp. 404-409
Hi. I was only on HU for 3 months. The sccs developed when the rux dose was increased from 15 mg bd to 20 mg bd. Triggered, rather than caused : I’d had a couple of bccs before, and that made me susceptible. If I’d been warned that this was an additional risk, I’d have said no to the dose increase.
What is your dose of methotrexate?
Rachel
PS keep slapping on the sunblock, and keep an eye on any non healing lesions on sun exposed skin.
Yes,sorry to hear your news but I also find it interesting that you seem convinced that it was 'triggered' by the Ruxo. I see from previous posts that you have a history of skin cancers, Basal cell skin cancer and squanous cell cancer. Given your history i'm surprised when diagnosed your Haemo would even consider putting you on Hydrea and didn't go with pegasy's in the beginning but maybe cost dictated it! I see from your reply to Ebot you have already seen the 'Great professor' who is Claire Harrison, what medication were you on when you saw her and what did she recommend as the best way forward with your Mf and skin cancer history? Atb, tina.🤗
Hi Rachel. I’m so sorry to hear of this current episode of woes. So utterly unnecessary! Am sending love etc to you. I just wondered whether it was the moment to ask for a second opinion and maybe a urgent referral to Guys - I don’t think you’re a million miles away?
I’m now in Oxford. My haems here are, I think, in contact with Claire Harrison - but I don’t want another personal referral. I saw Claire Harrison’s team originally, and I’d like to keep everything on one hospital here at the Churchill in Oxford.
Oh Rachael, what a horrible time you are having. I am so sorry to read your post. Just remember we are all here should you need to talk or just vent your anger at your situation. You just fight this thing with everything you’ve got. We are all behind you.
The plot sickens... I was also only on HU three (3) months, whereas some others I know that have very similar problems have been on HU for a great many years...
My current understanding is that Jakafi can and some times does exacerbate ulcers and SCCs that might be caused by HU... (personally, I would like to remove that 'might') completely. People should be made completely aware of all known and suspected pitfalls of HU, in my view... And all toxic remedies for that matter...
Thankfully, for one of those, (ET), she is now taking Busulfan and off HU, platelets have dropped, and she is now being prepared for Pegasys' I believe... Her leg ulcer last I heard was healing nicely...
My MTX dose is still 10mg once per week, followed by double doses (10mg) of Folic Acid every other day... Seems to be working... he says tentatively... 'Fingers crossed' of course...
Hi Rachel so sorry to hear of your latest problem. Life just throws too much at some of us sometimes. Thinking about you and sending hugs and best wishes.
Hello Rachel - so sorry to hear that you’re back into the scariness with the latest news - I can’t help with any experience of the different MF treatments but I know Oxford is ‘up there’ when it comes to good care + I have everything crossed that radiotherapy will halt any scc progression - it seems a long time to wait for more testing in the new year, hoping your team along with Dr Harrison will come up with an alternative to the Rux.
Hello there, sorry to read that you have so much going on health wise at the moment. I have ET jak2 (for nearly 20 years) over that time it has mostly been treated with Hydroxycarbamide, I too have had some skin cancers and am constantly monitoring lumps and bumps. When I feel overwhelmed I try not to look too far ahead, even just getting through the next hour giving myself a pat on the back and then doing the next one. I can't offer advice on the drugs but just wanted to send you some good wishes that you get things sorted and under control soon.
How awful for you! I hope things turn out better for you soon..
So when I changed hematologists in September and got my diagnosis of post ET MF, she took me off ruxo and anagrelide and put me on Fedratinib and lowered my dose of hydrea. I now go once a week to check my blood and also to get an EPO injection if my hemoglobin drops below 10. I almost feel like a guinea pig with the Fedratinib Because she told me it was the first new drug approved for MF in 10 years in the states. My platelets are still over 700 but her main concern is the anemia for now.
Thanks, CJA: It does seem as tho Fedratinib might be a good bet, and now it’s been approved for MF that might make a difference. I didn’t get on, at a personal level, with Claire Harrison at Guy’s, but if she is the only person in England who has access to Fedratinib then I might have to swallow my pride. However, one of my aims in moving tonOxford was to have all my doctors in the same hospital trust accessing my notes through the same computer system. Anyhow, I think my new haem is likely talking to Claire anyway.
EPO is good stuff, isn’t it: it sorts my anaemia nicely. I use the longer acting form, Aransep, which only needs to be injected monthly. Makes holidays etc much easier if you don’t have to run a personal chill chain. Claire Harrison is the only person I know who prescribes EPO. No idea why other docs don’t,, esoecially in the USA.
Ah well, onwards and upwards ( that was my old school motto).
So sorry to hear re your latest diagnosis. It might be worth seeing what your dermatologist says as if it has spread it is whether they will refer you to onocology and offer you immunotherapy as so many new drugs available with nibs and nabs endings, and then they will need to work out what works alongside your MF treatment.. Hopefully if it has remained local then fingers crossed the radiotherapy will do the job and make your MF treatment less of an issue. Hope you get some answers v soon and please keep us in the loop.
Oh Rachel, I’m so so sorry this is happening. You already had so much difficulty & this does seem scary. I’m afraid the only suggestion I can answer is for you to do your own research. I already know you’re bright so researching good medical sites should be manageable. Personally I’d look to see if there are novel treatments for treating you that have been found successful.. Other than that I hope you can provide yourself with a healing environment to help your body. Meditation, visualization, happy movies, music and constantly reminding yourself how loved you are by your family & deeply cared about you are by all of us. If it doesn’t sound too hokey, you could visualize yourself surrounded by all the love and caring of everyone whose life you’ve touched. And studies have shown that prayers of others can help even thoughts who are non-believers. Please know how much we care & we’ll be keeping you in our prayers/thoughts until you’re safely through this. Please keep us posted. Sending you lots of big long hugs and strong positive thoughts. ❤️Katie
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