Just needing a bit of a moan. I've had high risk MF now for many years. Last year I was assessed for STC transplant but was told I was not robust enough so as I am now over 70 and resident in Scotland, that is no longer an option for me. No transplants available for the over 70s apparently.
I had been on ruxolitinib for about 10 years and it was successful in reducing my large spleen. Unfortunately, it stopped being effective and I am now on fedratinib but have become transfusion dependant because my haemoglobin level keeps plunging. My consultant doesn't want to reduce the dose because of the spleen problem. Fedratinib is not reducing my spleen although it isn't growing much either. I also find that I often feel queasy quite soon after taking the drug, though this lessens as the day goes on. For me, rux was a miracle drug which made me feel much better. I can't say the same about fedratinib.
Has anyone else had a similar experience?
Hilary
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Bullace
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Hi Bullace, so sorry to hear about not getting an STC and also that Fedratinib is not working as well as the Rux did initially. I was diagnosed last October with stage 2 / high risk Myelofibrosis, as I hadn't been on any other drugs I was offered to join a clinical trial (called FEDORA) which combines Fedratinib (400mg once daily) and Ropeginterferon Alpha-2b (Besremi) now at 250mcg injected fortnightly. So far my spleen has reduced to 2cm below rib and I feel ok, no noticeable side effects from either. With Fedratinib you should also have been prescribed Thiamine (Vitamin B1) as previous trials showed Fedratinib reduces your Vitamin B1 level. In addition I was prescribed Metoclopramide tablets in case of nausea and Loperamide tablets in case of Diarrhoea, fortunately I have not needed to take either. I take the Fedratinib at lunchtime each day and make sure I have eaten before. Like you I am transfusion dependent, 2 units fortnightly but have had 3 when levels drop below 80. I still get out of breath climbing stairs etc. but my energy levels are ok to carry on playing golf (badly). Hope things settle down for you, it may just take a bit of time for the Fedratinib to start taking effect.
Thank you for your kind words. Maybe there's a drug combination that would work for me too. I hope so! To be fair, they are monitoring the thiamine level and I have had the metoclopramide too, but don't seem to need it as much now. I also find that the transfusions help with energy levels. Good luck to you too and keep enjoying the golf!
Apologies Jennie my reply was meant forBullace.! Hope you are doing well,been without internet connection ,so not seen much news.Now we have a fast fibre!!Very Best to you & Hubby.Sally🤗
Hello. Thank you so much for responding. They explained that my kidneys might not handle the SCT and that was why they didn't feel able to do it. I have to confess to being a bit relieved at the time as well as disappointed! I know how hard it is. I do see an MPN specialist who is really nice, but I've become aware that things are a little different in Scotland. I was seeing Professor Harrison's team in London before and there were more options available at Guy's.
Hi Hilary , , my only experience a number of years ago was that Rux in 15 months taking it didn't shrink my spleen but may of stopped it enlarging further. But it helped with other symptoms and gave me a feel good factor that I hadn't had for years. Maybe twinning Rux with something else might be an option worth trying but I'm out of touch with current drug treatments. I also want to say how sorry I am that you were knocked back for a SCT and to also say in my experience it's not simply down to age as to whether or not one is considered a good candidate for SCT. Obviously age is one factor but I'm sure there are much younger folk who haven't been suitable due to their overall health because i can tell you that undergoing SCT is a rigorous process which puts great strain on a number if not all ones major organs. This is especially true for those unfortunate few transplantees who experience more than a reasonable bedding in reaction of the incoming grafted Stem cells called Graft Versus Host Disease. This after effect if it happens at all can be very mild to very severe and sadly in some cases fatal.
This is why potential candidates undergo a range of tests to assess their suitability. Nobody has said this but I guess treatment cost must be a factor in the decision making process , again not necessarily to do with age per say but successful outcome percentage.
About 5 years ago my consultant at Manchester Royal told me their oldest transplantee was 76. You are entitled to a second opinion as Otterfield suggests but I would hope the reasons for your lack of robustness were fully explained and you weren't dismissed out of hand as does sometimes happen.
I hope one way or another you manage to find a way forward which suits you with fewer if any transfusions and allows you a reasonable if not good quality of life.
Hello Chris. Thank you so much for your considered response. You're right. They did explain that my kidneys were not up to the SCT and I have to confess that I was a tiny bit relieved not to have to go through the rigours of transplant - as well as disappointed. I had high hopes of fedratinib - maybe too high. Thank you for your good wishes - much appreciated.
Well I was just aiming to reassure that hopefully you wouldn't be exposed to a process that you had a poor chance of surviving. And in turn dampen your disappointment. Ironically it was the other way around for me as I was euphoric about being given the chance but at the same time very apprehensive about what lay ahead and as my experience with GVHD went I was right to be so. I guess you must wonder still if things might of been different at Guys , , , could you not request their input to the decision if it were revisited. . . . . . . . .
Hi to you.I am over 80 now,changed to Rux after 9 yrs of H U,which began to make me rather poorly....now hovering to M F...no chance of transplant! reduced my Rux by 1/2 so just waiting my consultants decision re transfusions.Fortunately my last blood tests H C T had risen & so had platelets which all crashed a few weeks ago.Very Best to you & keep going,when I was diagnosed years ago My prognosis was poor,now I am still alive & kicking....new drugs helping us cope now,maybe I will make a 100 yrs!
Hello Inca. Thanks for your encouraging words. I hope they soon get the rux level balanced for you. Very good wishes to you. There do seem to be lots of new drugs on the horizon. Hopefully!
Must say ,like you Rux gave me more energy,but I did do much more so I did not get rid of sudden ‘brick wall’ fatigue.I hope things soon improve for you,I think too we forget that we get older not younger !I know lots of people tho less than my age who cannot do half I manage in a day.Yes I have tired days which really irritate me as I still work as a sculptor & painter professionally,so need to get the work finished .....often I don’t!! We have German Shepherd dogs,love their training which we do ourselves,until recently still had our home bred mares,we had a stud in U K for competition horses,when those mares died ( very very old) I honestly felt like giving up myself....so It is so important to keep up with the interests that have been your life. & keep you alive.Have to say my superb Dr thinks I am a crazy English woman!!!However I am still here!! Very Best to you,Sally🤗
That’s a great outlook,I will keep it in my mind.!I hope he did make it to a great age,I lost my Dad at 50 yrs quite suddenly....I still miss him even now.We remember lots of their quotes & opinions for ever I think. Keep well Jennie .🥰 Sally
Gosh! Very reassuring. I was diagnosed with CALR+ ET 15 months ago and will shortly turn 80. Still going strong on Peg interferon . Am determined to survive my lively dog who is only 6. I don’t dwell on my condition and eat drink and make merry.!
yes you must keep going for your dog !We lost our 9yo G S D to cancer a month ago....thank goodness we have his 6yo nephew or Hubby & I would have died of grief.We have decided to get a puppy,madness I know but G S Ds are fabulous protectors,easy to train& guard you until their last breath...our 6 yo still misses his uncle,never been a sole dog in the household & we actually find he takes up much more time than the two dogs together! Yes we have plans should we both pass away before the dogs,but we must have a reason to get up in the morning ,walk,play,train & love very special dogs,proud of them too ,when we go into town they are so admired,their beauty & behavior,people are amazed & stop us to ask about them. Gives you the kick we need to cope with this rotten disease.Best to you & your canine companion...best friend ever.😍
Inca. Absolutely! Mine is the reason I get up in the morning . My Consultant Haematologist has several pooches and will make sure I survive my pooch. I’ve said my dog mustn’t be left an orphan .
Sorry to hear about the issues with treating the MF. There is some potential good news on the way with the approval of momelotinib, which we hopefully will see before too much longer. The indication will be for MF with anemia. It is moving forward in the USA and Europe.
Hello Hunter. Thank you so much for your hopeful news and info about momelotinib. I hope it will be available here soon. Thanks too for your good wishes.
Hello, as you can see from my earlier posts I went through your path. Like one of your other replies I was given thiamine and 2 anti nausea medication just in case I felt nausea. I only used a few of the anti nausea tablets. There was a juggling act with rux as a higher dose was needed to reduce spleen but then my platelets went too low. Fedratinib I tolerated but all this was to shrink spleen ready for my transplant. As a mf patient my was spleen was very big but no longer causing me symptoms, the main reason to reduce for me was in preparation for my sct I was also told there were other drugs close to availability but then had my sct. If I'd decided not to go ahead, I think the haematologist would have shifted emphasis to another aspect of treatment. ( BTW my spleen was still too big at transplant so it was shrunk by radiotherapy immediately before transplant)
I am so glad it's gone well for you and wish you all the best for your complete recovery after your SCT.
I had radiotherapy to shrink my spleen some years ago and it worked wonderfully well but I became very anaemic because the spleen wasn't doing its job! Sometimes it feels like you just can't win!
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