Hi As I posted here, I had a BMB a couple of weeks ago. Unfortunately the first part of the sample that was analysed had been badly taken and couldn’t be fully analysed. What a bummer. So I’ll have to wait for the trephine ( bony core) part of the biopsy to be analysed. I’m still hoping that I can find a drug or combination of drugs ( adding Pegasys to rux has had good results in the Danish study recently posted ) thar will not give me the acute recurring aggressive disfiguring generally crap sarcomatoid SCCs. that rux alone does, but will keep control of the MF.
I ‘ve now got a second opinion referral from the excellent dermatologist I was seeing at the Churchill Hospital in Oxford to a colleague of hers who works at Kings, who has actually seen a lot of people taking rux who have developed sarcomatoid SCCs. The system ar Kings is that a dermatologist and a haematologist both see the patient together. Wow. Brilliant idea. So , in a few weeks or six I should get a definitive view of the best available treatment that will deal with the sccs snd the MF.
Rught now I’m tired and fed up and not very coherent.
Thanks for listening.
Rachel
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Rachelthepotter
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Hello Rachel - hang on in there! I know the Oxford teams are ‘up there’ when it comes to treatment + it sounds like Kings have a ‘joined up’ regimen at their end, all of which hopefully will come up with a good plan of action for you. Keep us posted with developments. Very best to you. Anne-Marie. xxx
Apologies for using alphabet soup: SCC stands for a squamous cell carcinoma , a variety of skin cancer, not in itself that dangerous, but ruxolitinib - Jakafi - can trigger an aggressive variant called a sarcomatoid SCC. It’s very rare, and I’m feeling sad and angry that its happening to me.
Dear Rachel, it’s terrible that the person who took your BMB wasn’t competent. I hope s/he gets better training right away. The pain of the BMB is bad enough but we need to be able to count on getting results to inform ourselves & the doctors of our current status & best treatment plan. You’re very generous to use the term bummer to describe the situation. And I absolutely hate (passionately) having rare diseases, conditions, cancers, etc. You have enough unpleasantness in your life without also having these SCCs. I’ll keep my fingers crossed the your specialists can come up with a successful treatment protocol for you. Thanks for letting us know about your status, I’m sorry it’s so crummy (this is not the adjective I’d use in person.) Katie
So sorry to hear your woes. Not a nice place to be and hardly surprising you’re feeling tired and fed up - which I imagine is something of an understatement. But great that it looks like you’re going to get some joined up care. Hurrah! There’s a lot to be said for knowing you’re in good hands. Wishing you all the best, sending hugs etc.
Sorry to hear about the BMB. I was warned by my doc that the skill level of various providers/facilities was an issue. Hope you get the results you need ultimately.
I am glad to hear that you are getting a plan together for the SCCs. It stinks that the medications that are supposed to help us can also hurt us. I had some (less serious) adverse reactions to hydroxyurea and really cannot take it. I hope you find some alternative treatment options that do not come at such a high cost. I agree with you that having the docs work together at Kings is brilliant! Wish more providers worked that way.
Sorry to hear of these serious side effects -but it does sound as though you are seeing good teams who will hopefully find a way through this for you. Best wishes.
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