Hello I have had ET, for 15 years now diagnosed with Myloyd fibroses stage intameadit2 my Heamatologist sent me to the BMT clinic & I was told I would not survive the transplant as my lungs & kidneys are not up to it.
I am no advices to go on Ruxolitinib tabs I would like to here any advice & help,
Hi,
I have also recently been diagnosed with myelofibrosis, stage intermediate 2 (I think this refers to the risk level) and started ruxolutinib a week ago.
I don't fancy BMT: nasty procedure, poor outcomes. But our life expectancy is affected with MF. Ruxolutinib may improve life expectancy and can improve symptoms so that your quality of life stays good for longer. So I decided that if I can get ruxolutinib it's probably worth a go.
Hi Jane thank you for your reply.I am to hopefully going to start Ruxolitinib in a couple of weeks.I have to have an opp on Sunday 19 for an indirect herna so hopefully as soon as that's sorted I will go on it. Feel rubbish at the moment full aches & pain finding it difficult to get through house work & shop am 65 & got 3 grandkids to look after my husband is 72 kids are 7-9-10.we have no support.I have been told Ruxolitinib will not. Cure just help with the symptoms,is there any evidence it can prowling our life any. I am mf intameadit2
have a look at the NICE website : NICE (national institute for clinical excellence) have just approved Rux for high and intermediate risk MF patients within the NHS . They explain why - u r right, they say it certainly doesn't cure MF but helps with symptoms and can give a modest increase in life expectancy. I've been on it 4 weeks and feel better, far less tired, spleen doesn't hurt.
Good luck with the op. The grandkids will do a great job and enjoy the responsibility!
Hi Jane the opp got post boned so still waiting.I had a look a nice as you advised. Am hoping to start Ruxolitinib in the next two weeks of not sooner feel like am going to explode, if I don't do something soon.How it going for you ?would love to here.I read something on face book about a new low toxic way of doing act. Did you hear anything about it ?
Hi Jane been on Rux for 2 months now was brilliant till about eighth week when Heamaglobin dropped 7.5. Had one unit blood 4th Aug
Morning Jane, opp got postponed I will see sergean 19 July unless I get any pain or feel sick then am to go to hospital.
How you feeling now on the Ruxolitinib?
Am at Heamatology Tuesday so hopefully she going to start me on it.
Hope you're doing well
Sorry to hear about the op being postponed: you get yourself all ready mentally and then get let down..and have to do it all over.
I have to say that the Rux is the nearest thing to magic! After 4 weeks my spleen is 3cm smaller and I feel so much better and sleep better too, the difference is amazing. Only trouble is my whites and platelets still doing what they did on HU: if one is in range the other is out.
But highly recommend Rux
That's good news your feelings so much better on Ruxolitinib. I see Heamatology in the morning so hopefully she will start me on them.Got a new appointment to go to see a surgeon in oak field Hospital 6 July about my herna opp. I just hope this want spoil me going on Ruxolitinib.fellelling really ruff with the spleen & heavyness.lack of sleep & the worrie for the future for my gr kids
Hi Norar, I was diagnosed with MF over 7 years ago and been on Rux for 3 and a half years. I am 65 and no good for a transplant either. I lead a full active life am out walking my dog for an hour at 7 am look after my grand daughter and also walk her dog in the afternoon!! It's a hard diagnosis initially you'll have bad and good days. I'm lucky at the moment as its mainly good days but on my bad days I just lay on the couch with a good book. Healthy eating and of course the usual drinking of lots of water definitely helps me. Any questions just ask loads of help in this forum.
Hi Eire
Am not as active as you am hoping to start Ruxolitinib next Tuesday.carnt walk much at all for the discomfort I feel with my stomach when I walk.& the pushing in my ribs .sometimes I feel like am going to burst.not getting many good days at all.
I have had a lot of surgery in last 18 months hysterectomy & tumour removed got the all clear with this .
only to get told ET now MF intameadit2 high Rick
I also have CKD,& asma witch is why no good for transplant .
Oh gosh you've really been through the mill!!! Some people find the rux reduces the spleen mine is 17 cm at the moment was 23 and rising before I went on the trial. I've had lots of days feeling bloated and uncomfortable holding the bottom of my tummy while I walked!!!!!! Reminder of when I was pregnant. This is all very scarey for you by the sounds of it but I truly believe you will start feeling some improvement when you take the rux. Exercise no matter how little will make you feel good and I'm sure once the rux kicks in you'll find yourself walking further and definitely feeling better. Diet and loads and loads of water is a help also. You have such a very busy life this rux will be the making of you!!!!! Will be thinking of you and just so hope this drug improves your life it certainly changed mine and many others on this site. Take the tablets drink loads of water and carry on with your truly busy day!!!!!
I am also post ET Myelofibrosis and although I am on Ruxoloitinib I find my life is somewhat restricted by fatigue. I am hoping to move from Scotland this year and as we hope to be nearer London I have been offered a different drug trial. There is so much research into MPNs at the moment that anybody facing diagnosis now should be full of hope for the future. I have been in this "game" for over 20 years now and things have already changed dramatically since I was diagnosed. Initially for me there was little or no information on the internet and even my GP had to consult a specialist textbook!
Good luck with the ruxolitinib and I hope it helps. I'm not a suitable candidate for BMT either
Best wishes, Jan
Hello Norar
I also have MF and was diagnosed some 20 months ago. I was offered Rux and after a good amount of thought, said yes please. I am so pleased as it suits me very well and I lead a normal, happy life. Many of the symptoms like itching, hot sweats and very enlarged spleen went. The fatigue still comes and goes but not with such severity as before diagnosis. I realise it does not act this way with everyone but would say truthfully that it is worth a try. Good luck with your decision and I sincerely wish you well.
Linds
Thank you linds I have ask my dr if I can start asp as feeling not good at all right now very bloted & uncomforteble & in pain can't even walk without my stomach feeling like it's dragging me down.O don't have any is Hong or sweats
Hi Norar, I'm afraid I've never asked what stage I'm at. I've come to the conclusion I'm one of those who buries her head in the sand and all will be ok!!!! I'm due for a check up in 2 weeks and will ask that question also about my Dipps rating. I live in Ireland and when you are diagnosed with MF if appropriate you're given Rux immediately. My trial involves taking another drug with Rux called Panobinistat but I haven't found anyone else in this forum taking that combination. I've been told I'm the only one in ireland. My blood count has increased the last 2 times I've had tests for a transfusion so haven't had one now for 12 weeks been on the trial 3 and half years. I agree with Beetle when I was diagnosed 7 years ago there was only support and everything felt quite negative but now there is soooooo much hope let us all know about your new drug Beetle I hope it works out well for you. Norar you have a lot to cope with 3 grandchildren and you don't mention if your hubby is able to assist or not. What would they do without us grandparents hey????? Makes me feel soooooo good I'm being useful do meals and jobs around the house - we are an amazing species and coping with fatigue so don't knock yourself out!!!!!! Best of luck with your op.
Hi Eire
Yes hubby is brilliant & he is older than I he is 72 am 65.I really need to get started on Ruxolitinib soon my symptoms are all in my stomach feels so big hurts under ribs were my enlarged spleen is but also very uncomfortable all over hurts when I walk drags down. I do hope the Ruxolitinib works my life as really gone down hill. I find am staying in a lot & getting very lonely
Good morning third week on Rux feeling much better in my self able to get around better although hemaglobin low 7.2 been sent for a scan this morning to measure spleen, & see what's going on .on my right side discomfort there could be liver.Heamatolist thinks spleen shrunk.Back at clinic 18 Aug.
Spleen drunk down to 15 cm after being on Rux 20 mg for six weeks now
Benzene 
Hydroxycarbamide and Butec (buprenorphine) pain patch
Here comes a rant!
Looking for feedback- staring Pegasy?
ET & Treatment
