Myelofibrosis worsened so going to start ruxolitinib

[Scaredy_cat]

I've had my second consultant appointment since being diagnosed with post ET myelofibrosis about 1 month ago. Then I was intermediate level 1 with platelet count 117 which gave me a median survival of 14 years. Now my platelets have gone down to about 70 do I'm now intermediate level 2 with a median survival level of 4 years. Not sure how this reduction could happen in such a short time.! However I'm now eligible for ruxolitinib. I'm hoping this will have an affect on the mouth ulcers and tingling I get.

[Otterfield]

I'm very sorry to hear that your Myelofibrosis has got worse. However, many of us here are on Ruxolitinib and I (and others I think) have found it a huge help with symptoms. Personally I take no notice of median survival rates - I would find psychologically unhelpful to have that kind of expectation. One consultant told me that he wouldn't be able to give a prognosis anyway but said "People live for a long time with this."

Ruxolitinib has some side effects, including suppressed immunity and (embarrassingly) flatulence. Like most MF patience I experience fatigue, but it's fine if I manage my time.

Please don't be disheartened - new drugs are always on the horizon and there is the possibility of a stem cell transplant for many of us.

All this makes it sound like I've got this sussed, but I really haven't! I and others can offer fellow feeling and support though.

Good luck and best wishes, Jennie

[Inca in reply to Otterfield]

You have such a sensible outlook Otterfield,I know that at my age stem cell transplant is not an option,but when I first was diagnosed with P V,my consultant told me that it was malignant I would not get better tho Hydrea would keep me alive 5- 10 years with good luck.Thank goodness then came along Ruxolitnib,just when I thought life was about over.Yes so true new drugs are being discovered,newly diagnosed have a very good chance of a very normal lifespan.By the way I also notice the flatulence!!!!Tried all ways to eat different foods to no avail.....just have to cough louder is my husbands suggestion.Fatigue I manage ,tho not always esp in our intensely hot days.Very Best to you ,like me you ignore how long we might survive,just carry on the best we can.😀

[Otterfield in reply to Inca]

Ah thank you - I don't often think of myself as sensible!Best wishes to you.

[Inca in reply to Otterfield]

Well I always read your posts,I don't look at the site every day & some posts are so dreary,you are always positive Jennie,I admire your outlook ,you are I am sure so much younger than me,I feel that M F is so awful for younger people.I was so lucky that I am treated in Franceas soon as I hovered towards M F I was given Rux,then still a very new drug & not given in U K at the time....so who knows what the outcome for me would have been then.I suppose you know how very expensive the drug is? No wonder M P Ners are kept on HU as long as possible.Rux is prescribed by my consultant only & is ordered by the pharmacy direct from the manufacturer.I don't know about UK.

When we come to my daughters in UK I bring a month's supply of all Meds.Unfortunately with Covid have not been for 2 yrs,maybe later this year.Keep Safe & well ,Sally

[Otterfield in reply to Inca]

Well thank you again! I'm 59 turning 60 next month so I don't think I'm one if the younger ones here!I try to be positive, but much of that is due to the support I had on here when I was diagnosed last year.

Lucky you living in France. My husband is fluent in French and we sometimes think we should have spent at least some time living there when he retired.

Best wishes to you, Jennie

[Inca in reply to Otterfield]

We have been very contented here for many years.Our area is beautiful,peaceful & traffic is minimal ,it's like rural England was when I was a child, safe.We do like to come 'home' often ,which of course has been not impossible but difficult with Covid restrictions.Brexit too has caused many problems...but health care is excellent.Have good French friends tho most of the U K ones left as Brexit loomed.We have got so used to peace & polite people that when we arrive in U K the traffic & noise horrifies us.Its peaceful at our daughters farm & village but once you leave there on to busy roads ,yes rural roads not just motor ways it's a shock to us now. Our area is busier now with holiday makers ,we can shut away in our ancient house & land when we need to .You probably would like rural France & it's lovely

Bastide villages,little traffic to get to our nearest towns & cities speaking French is a bonus too ,spend some time here when you can Jennie,Best to you Sally

[Otterfield in reply to Inca]

I am very envious, although I do live in a lovely part of the UK. My husband and I are itching to get back to France for a good long holiday!

[Scaredy_cat in reply to Inca]

Coughing to cover the farts! No...in the age of covid, people fart to cover the cough!

[Inca in reply to Scaredy_cat]

Of course it's a typical male remark,I do not take his Rugby playing type of advice anyway.Not only that but at the moment we are on 'intense heat'warnings to stay in with shutters closed........so no problem at the mo !!!!!

[Inca]

Worry not ,you will feel much better with Rux,no more mouth ulcers,itching etc,more energy too.Keep positive,you will be fine ,lots of us on here are alive & kicking.Very Best to you.

[Inca]

Meant to say my platelets are always low ,have been down to 20 ,Rux has levelled out all my bloods,I am tested every month.So try not to worry I am still here,recovered with Rux slowly but positively.,Best Wishes.

[hunter5582]

Sorry to hear the news about the progression of the MF. Unfortunately, MPNs can progress gradually for a long time then suddenly spike. I am glad to hear that you will be able to access ruxolitinib. Wishing you great success with RUX for both symptom and progression control.

I am aware of my own statistic projection for survival, but really do not pay much attention to it, The statistics cannot determine what will actually happen to any one of us, just the probability. I prefer to focus on my quality of life rather than its length. I am much happier that way.

Please do stay in touch and let us know how things are going.

[Andrew8]

Anagrelide and Hydroxycarbamide

I was diagnosed with ET in April 2016, and put on Hydroxy, but suffered extreme fatigue in December 2106, changed to Anagrelide, but fatigue continued until April 2017, when I was diagnosed with Atrial Fibrilation, after cardio hospital treatment and medication was re-diagnosed with MF, and changed to Jakavi. After two cardioversions my AF is now stable, with reduced medication. Developed shingles in August 2017, and some rash is still present but manageable with Aloevera gel. Platelet level stable at about 500, and spleen is only slightly enlarged. Still keep active, 70 , cardio rehab weekly, swimming , walking, etc, but some days just have to be a lazy one. Tend to do too much on the good days, but grateful for all the wonderful treatment at Aberystwyth hospital.

Update August 2021. I am reasonably sure that my cardio problems are due to a side effect of Hydroxycarbamide ( which is well documented ) In 2019 I was experiencing general fatigue, and it was suspected that the cardio medication to control my heart rhythm, may have been responsible, so the dose was reduced, but this did not help, and in December 2019, I went back into AF, and despite treatment for Thyroid, I showed no improvement, and was not offered another cardioversion. Earlier this year with no apparent way forward my wife kept looking for ideas from Dr Google, and came up with possible magnesium deficiency. So I tried taking magnesium tablets, and the background fatigue has largely improved, but I am still left with the fatigue and breathlessness when doing anything more than light general exertion, which is usual with AF. However I have now been offered another cardioversion which if it works may improve my capacity further. Jakavi seems to control the platelet levels well, and all the other blood factors seem to remain stable, but again the symptoms of shingles is a listed side effect, and of course Jakavi is a very expensive medication ( £2k per month I was told ) .

[Wyebird]

So sorry to hear of your blood results. Sending you huge hugs

[Cja1956]

So sorry to hear of your progression. I was diagnosed with post Et Mf intermediate 1 in September,2019. At the time I was taking jakafi and Anagrelide. My hematologist, who is an Mpn specialist, took me off of both of those, and put me back on hydra and then a new drug called Fedratinib. She felt the jakafi was causing my anemia. I’m 65 now, and we discussed yesterday having another BMB to see if I had progressed to intermediate 2. I am the one who really wants one because I don’t want the window to close for me to have the transplant.

As for median survival, I agree with the others. Those are only statistics and, as Jennie said, There are more treatments on the horizon.

All the best,

Cindy

[dancingelephant]

Sorry to hear of your development of myelofibrosis. I was diagnosed a year ago and immediately put onto ruxolitinib. The effect of the first week was incredible, and it has generally improved my health. However, there are ups and downs, as with all things, and everyone is different. I have other symptoms, but find that my Consultant is keeping a pretty close eye on me. I have recently asked to see Dr Harrison at Guy's, for a second opinion, and am waiting to hear. I agree with Jennie that no-one knows for sure what your prognosis is. Just try to pace yourself, rest when you need to, and enjoy each day as it comes.

Like everyone, I have had some dark days, but we are so lucky that we live in the western world and have the chances we have been given.

Good luck, there are times when fear is worse than the condition.

Best wishes,

Bonnie

[MFBMT2011]

When I was diagnosed with Primary Myelofibrosis 11 years ago in the UK, at the age of 58, I was IR2. 18 months previously I had had a normal blood test. My HGB was in the 9's and Platelets below 100. My prognosis was 2 to 8 years with a median survival of 5 years. Rux did not exist as it was still in Phase 2/3 trials. My local Haematologist would only offer transfusions so I went for a second opinion with an MPN specialist (the best in the UK!) and that was the start of the route I wanted to take, the only potential cure, SCT (Stem Cell Transplant) . I had my SCT 10 months after diagnosis. SCT is not suitable for all as it is quite demanding and requires reasonable stable health but is worth looking at as an option. It is risky, but so is doing nothing. Scaredy_cat I don't know if this would be suitable for you, as for a start I don't your age, and a gentleman doesn't ask that of a lady! However, it is worth discussing. Happy to answer any questions here or via PMs.

Chris (the Princess Leia version with Lady Stem cells.)