New drug update

Sounds like you’re coping really well @Suzyq . I seem to remember that I was really keen to start my chemo once I was told I had to have it. I think because once it started then I could start to plan a timetable ahead and make tentative plans for the future which made feel that I was more in control of things.

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Hi franko did you have side effects and what were they may i ask…were you put on fedratinib?

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Hi @Suzyq I had a different drug regime using Velcade. It didn’t honestly give me many side effects. I was sometimes a bit tired and some things tasted differently but I consider I got off lightly. But I think different people react differently to treatment so there’s no way of telling what will happen. When it became obvious that nothing terrible was going to happen, I just went back to work as it seemed a bit pointless staying home watching daytime TV!

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Hi erica just to update on fedratinib i have had fatique so bad …my craving for sweet things chocolate cake etc has completely gone and i have cravings for pork pie and pickles prawns and chinese meals so strange consultant doesnt understand it either but i have lost nearly a stone in weight …im due for renal scans again and mri quite soon and i have again been put on steriods …my spleen size has gone down from 17cms to 12 cm which is brilliant

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Hello there @Suzyq,
Thanks so much for updating us on your experience with Fedratinib. Interesting to hear about your taste changes, hoping that your weight loss doesn’t continue too. The fact your spleen size has reduced by 5cms is fantastic, a postive outcome for you after all this time.
Do take care and and keep in touch, sharing your story is so valuable and we really appreciate it.
Kind regards
Gemma

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Hi @Suzyq thanks for the update and good news about your spleen size.
As for your weight loss, very strange, and as for your cravings, well.
I am glad that your consultant is on the case, although he does not understand it, take care of yourself and please keep updating us.

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I’ve been on fedratinib for 5 days for myelofibrosis. Can any tell me when I’m likely to see an improvement to my itching? Also when are side effects likely to appear?

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Hi @Katydid a great big welcome to our forum I will copy your post to the Blood Cancer UK nurse advisors for you @BloodCancerUK_Nurses before I forget.
However, we are all very special, unique, complex beings so your questions might be best answered by your medical team, it might be your CNS (Clinical Nurse Specialist), Consultant or GP.
Mind you others on here might be able to share their experiences.
I look forward to hearing more about you so please keep posting.
Look after yourself

Hi @Katydid,
Thank you so much for taking time to post & a very warm welcome to the forum.
May i ask how you are feeling on your new treatment?

I’m sure you will be able to connect with others who may have lived experience of fedratinib as you can see from previous posts within this page, there is a number of our community now receiving this.

In terms of your itching, it may take a number of weeks for any difference to be seen.

However as you are fully aware everyone’s response will likely be quite different. If you do have a CNS team, you could ask them their thoughts and experience of this.

Should you ever wish to talk anything through, please don’t hesitate to contact our support line at any time- Blood cancer information and support by phone and email | Blood Cancer UK

Best Wishes, Lauran

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Hi @Katydid and a big welcome. I can see @Erica and the team have given good advice and others will also share their experiences. Please keep us updated on how the new medication goes :blush:

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Hi @Katydid I have been thinking about you, how is your itching and any other symptoms doing now.
Look after yourself

Hello
Previously on ruxolitinib then was on fedratinib for 4 weeks at 200mg and now 2 weeks on 300mg. So far 2 separate days of really bad diarrhoea . The hospital provided me with antidiarroeals and anti sickness meds. I really hope the diarrhoea doesn’t become regular. How are you finding it?

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Hi katydid ive been on fedratinib for nearly 6 months and take 400 mmg a day .i have had diahorrea a couple times really bad .i get fatique so much and find it difficult to get moving seeing consultant next week see what she says its so hard but just have to persevere

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I have difficulty working out why I only get the diar occasionally. I’ve made sure i have clotted cream ( a cure for anything!) when I take the pills lately. So far my blood counts haven’t taken a dive like they did on rux. How are yours/

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My red blood cells have really fallen so im anaemic…im having epo injections once a week to help just waiting to see if these help me …trying to keep positive

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Hi @Katydid,
Thanks so much for sharing this with us & i hope you are able to find some good support within our forum. May i ask has the drug given any relief yet to our itching?
Unfortunately, as like many drugs, some of the more common side effects of Fedratinib can incl diahorrea & nausea. It also can affect everyone quite differently from severity and i hope that your 2 occasions don’t become more regular or severe.

It is good to hear that you have been prescribed medications to combat these but i would suggest that you keep talking to your team about it, especially if it becomes more of an issue or you feel the medications to counteract are not effective.

Also know that if you wish to talk things through, please remember our helpline is always very much here for you- 0808 2080 888.

Take Care, Lauran

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Hi @Suzyq please let us know if your epo injections help.
Look after and be kind to yourself.

Hi erica i have had 9 apparently it takes about 16 before you feel any effects from it…im in hospital at the moment with infection and having blood transfusions as im so anemic my cancer drug been halved so heres hoping

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Oh @Suzyq so sorry to hear that you are in hospital.
It sounds as if your medical people are on the case.
Please let us know how you get on.
Look after yourself, don’t forget it takes a long time to build yourself back up.
Be kind to yourself

Hi @Suzyq, I just wanted to echo what Erica has said. I’m so sorry to hear you’re unwell in hospital, it must be a worrying time for you. We are thinking of you and are here if we can do anything to support you.

Best wishes,
Tanya.
( Blood cancer information and support by phone and email | Blood Cancer UK)

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