Why is there so little interest in the trial drug ruxolitinib by you out there. Iv been on it for weeks and my whole world has changed

[Twinkly]

Get in touch if you are interested ,I'm no longer needing venesection

And my energy levels are really good,my team at hospital are pleased .

I'm a very active woman..busy life,,

[linds]

Twinkly, it's not so much not interested but don't know anything really about it. I have seen the name mentioned here but that is about all. My first haem only mentioned hydroxurea and then only to say I was not a suitable candidate as with me it is my red cells main problem. I have been having venesections since diagnosis in Jan of '12.

How super to think of this working so well for you as my worst bit is having had to get used to the frequent fatigue. You don't say how old you are but I am 66 and was once extremely active a state I plan to get back to as soon as possible but I reckon it takes the body a while to adjust though. However, I am finding that I am much better now the cooler weather has arrived (sorry to all those who love the heat) and my hot flushes seem milder.

Best wishes and thank you for being prepared to share your thoughts. Where is your hospital by the way?

Linds

[Twinkly]

I breed xshow dogs trained in a gym 2 days a week ,really fit size 14 ,developed pain

Stiff joints 7 years ago rheumatoid arthritis ,,took methotrexate ,blood tests each 4 weeks,they went crazy 2 years ago ,sent to cancer unit ,confirmed ,clotting irratic results,I have PV.took hydra,sweats,digestion ,pain ,venesection 4 weeks.asked to do Majic .trial.agree,given ruxolitinib 5 a day ,with blood thinning ,I'm amazingly better,do you want me to tell you more I live in Cambridge ,I'm 68 blond and enthusiastic .female.

[JediReject]

Hi Twinkly, yeah it's very much like Linds says depending on where you are treated there aint much if anything mentioned about it. I volunteered for any forthcoming drug trial for PMF as have been on Hydrox from the start - now 7yrs - but I had to mention the Rux to my Hem tho Im sure he was very aware of it and I would of signed up to the Comfort trials some 2 yrs or more back had I been given a sniff at them even if I wasn't actually one of those given Rux.

As you might be aware NICE rejected Rux earlier this year as a first line treatment for MF in England on cost grounds for 'just shrinking a spleen' with some other benefits despite a raft of well drafted evidence and argument for it, which I think rather devalued its potential somewhat as those in the US who have been taking it for some time could be experiencing some fibrosis reversal according to what I've read. So perhaps people lose a bit of faith in the system along the way.

Those that were on the trials for who the drug works have a continued supply thereafter but for others like myself a case has to be put to the Cancer Drug Fund by their Hem as it is on their list. I have secured funding and as my Hydrox isn't keeping me stable we have discussed the possibility of moving over to Rux in the New Year. But it doesn't work the same in every case so you have to be lucky.

I wish you every success on your journey and I for one would love to hear more from yourself and others on any trial - theres one for Pacritinib at Manchester- about your experiences which will hopefully keep us informed of progress in what I reckon is the biggest break-through drug for MPNs with the smallest exposure.

So thanks for posing the question Twinkly as I agree with your sentiment and thanks for agreeing to undertake the trial because if it shows a wider application it could yet get the go ahead.

Cheers for now

[Twinkly]

I had really bad night sweats ,tired exhausted all the time ,sat down fell asleep,I Have 12 show dogs ,couldn't manage,the doctor was bleeding me 4 weeks ,,then I went on the PHDiet ,I was good for 6 months ,it all came back January ,this year ,this illness is irratic,digestif problems,are difficult ,cramps in hands and feet,bruising ,so many side effects,to cope with, I read all I could about the Majic trial ,,then my prof asked ,would I do it ?? I have nothing to loose,life was miserable.i had all the tests all over again ,including bone marrow, it's worth it ,it took a while to change over from hydra capsules

But now 14 weeks on ,I'm doing well,no sweats ,awake all day ,slowly feeling alive again ,brain clearer,optimistic,I went to the day in London ,Clare Harrison ,is the head of my trial ,we met ,she is great you need to ask ,at your hospital don't accept being unanswered .read all reports ,it's your life,you are very important,,twinkly. Xx

[Hidden]

It's great to hear that people are doing well on Ruxolitinib. I think I lost interest in it when NICE refused to fund it. I can identify fully with Twinkly. I have never been offered anything but Hydroxycarbamide and all the symptoms that she felt were making her life a misery are doing the same to me just now.

I used to get good spells lasting a couple of months but this year has been more bad than good with a consequential lowness of mood setting in. I have a sister who understands, having been through cancer treatment herself and the resultant fatigue which takes a long time to go away. By the way her treatment was successful up to now which I am so happy about.

I have another sister who has just told me that it should be just like diabetes and I should be feeling great now. I tried to explain things to her that we on this forum know all to no avail. Her answer to me was to get a job and not in so many words "to buck up". I have worked all my life and have a full state pension in my own right and a small pension from my former work. I am 65 soon and apart from feeling ill and tired so much, she makes me feel like a malingerer. She tells me "I have all the time in the world". I have told her I don't want or need sympathy just empathy. Her attitude is making me so unhappy.

[Twinkly in reply to Hidden]

Hi crazy daisy love the name! I breed poodles and had one that name,!!

Tell your sister to button up,,nobody and I mean nobody knows what this problem feels like until it comes to them ,I was running round the ring at crufts when I collapsed at the ringside red in the face sweating shaking my mates thought I was a gonna,but my lady doctor is a saint she blood tested me I was in the cancer clinic right away,,the prof I have understands hes a real expert ,I ask questions all the time ,he answers me,please read the Ph diet ,,it's on line too ,eat well .tiny ,and often .

Get a dog or a cat or a parrot ,anything that's a mate..walk out 20 minutes ,and look up .not down ,life is for living ,make every day important,share your experiences ,,with us,

[linds in reply to Hidden]

Crazy Daisy - I wonder if your sister would read something from someone completely on the outside of your family. I don't have a sister or a brother having always been an 'only' child but there are times in recent months I have yearned for the comfort from a sibling, thinking they would understand without reservations. My husband has been super and the majority of friends try to understand when I, who was so gregarious and into everything, suddenly began to withdraw from social life. I try to be normal but this PRV is so unpredictable that I could be in the middle of a wonderful luncheon and then feel so ill that I need to withdraw. Usually sweating profusely, giddy and unable to walk in a straight line. The need to sleep is overwhelming and all I look for is a quiet place. Thirty minutes later I am generally ready to go again.

However, this is only part of it as we well know.

Friends say my skin changes colour and my eyes become very shiny just before an episode. I have friends with diabetes, one very severe, it is not like this. I also have a very close friend who went though long cancer treatment and she says she understands the unbelievable fatigue but she had an excuse that people understood. This is a strange and difficult hic-up in our system, we did not do anything to get it, we don't deserve it because of life style issues, it just is our journey. Empathy is the word, unconditional empathy. Maybe your sister is afraid for you and does not want to face the fact she just does not understand - I hope she can change because you are valuable. As for your sadness, try not to dwell on it and know that we here understand.

Linds

[ainslie]

I think the main issue currently may be that most people wont get Ruxo because of the cost, when I tried to get Pegasys I was told first I had to fail on Hu and regular Interferon. Ruxo is a lot more expensive something like thousands per month so I suspect the NHS wont dish it out. Also early days so maybe not wise to leap in to it unless you have to until all trials are complete and then some, I read quite a lot about it on other forums where the use it for MF an there have been issues with it. Having said that its great that now there are alternatives for those that don't do so well on the current drugs or don't want to take them. Also its great that we have Clair Harrison as probably one of the leading experts who knows a lot about the Ruxo drug and she is in London.

[Twinkly]

What can I say ,you are so right in all you say ,I'm at an age now I think why wait ,life was no life on the hydra capsules.and blood thinning,I had to act like an old lady NotMe

Claire is amazing so generous e with her time ,a woman to be admired .she is the head of the Majic trial ,,I'm on ,I met her at the evening forum this year ,I understand much more since she spoke to us about the enlarged spleen problems.i never knew before,

It's a terrible illness but we can help ourselves by changing life styles to cope with it..

[beetle]

I am taking Ruxolitinib. I started it nearly six months ago. I am in Scotland which is not covered by NICE and was lucky enough to get it on "compassionate use". I had ET which progressed to MF and I was taking 2000mg HU per day before transferring over. I now have the lowest platelet count in years and the best white count since initial diagnosis nearly 20 years ago. However I am anaemic, have had no reduction in spleen size (the high dose of HU probably had that fairly under control) but more spleen pain and no significant reduction on fatigue. Despite higher white cell count I have had one infection after another in the last six months so I am somewhat "on the fence" over the drug. I was getting severely neutropenic on HU so something had to give and I guess I am better off now. I am still hoping for something better around the corner!

I am glad you are doing so well on it, Twinkly. What happens after the trial - will you still get the drug? Good luck, JediReject, if you change to Roxolitinib in the New Year

[Kisses]

My husband is on ruxolitinb. Has been 12weeks a reduction of his spleen from 18cm to 10 cm what a difference he can now sleep comfortably on his side no night sweats no soaked sheets though night sweats I might add also feels more energetic. Has an amazing appetite has gained 2killos Were over the moon hope it continues. The down side. He gets headaches occasional tummy upsetting but overall ok hope a lot more people can get this drug .

[Twinkly in reply to Kisses]

Well kisses ,,you are so lucky to have your husband back ,,value these times ,you have been given ,,tummy upsets can be adjusted by changing the intake of food ,eat on smaller plates .try a snack every 3 hours ,plenty of water always to hand ,,fruit juice and figs make life regular again ..you will help with the headaches as well .take a rest listen to music ,relax ,,

[Twinkly]

I'm so glad to hear that you were given this drug in Scotland ..a gent at the forum on the 16 th came to tell us how limited your treatment is up there ,he hadn't heard about the trials ,at 63 he had to leave work and is now struggling with the illness and lack of finances ,,so un fare,also now we must applaud MPD voice for their information ,I can't tell you how much my life has improved on ruxolitinib .early days mind,,try changing your diet ,,dare I suggest green leaves and spinach for your anaemic problems,and broccoli the cancer hates these and shrivels up when it sees them coming !!remember popiiiiii. The sailor man ..

[JediReject]

Beetle - I'm sorry ze Rux aint entirely doin the biz for you my friend and I am especially surprised you haven't seen any spleen reduction in the 6 mths you been on it. I must admit I have mixed feelings about moving off the Hydrox coz regulars here will perhaps recall I have a high tolerance to HU given that I can wash it away with my fave ale - LOL. . Strange but true. But I Thank You for your best wishes and if it is decided the time is right I shall of course let you know how I go.

Hey it's all a far cry from those carefree days when as a pimply youth I used to tie me fishing rod and me sarnies to me crossbar and pedal off 6 miles for a days fishin' and my only worry . . . . . would the wind turn and be against me ont way back. . Happy Days eh. . love all.

PS - Nostalgia isn't what it used to be

[piggie50 in reply to JediReject]

Love your comments JediReject, nothing to do with our illness - They make me laugh!

[maestromaverick]

Hi Twinkly . I've been on Ruxolitinib for 15 weeks now . I have PRV . As people above have said we are all different and react differently . I was on Hydroxycarbamide for 4 years and my life was a misery . I also broke my hip , have osteoporosis and IBS. Since being on Rux I can say my rash is not so bad , my concentration has improved and my itchiness is not so bad . But the headaches , eye disturbances and dizziness are worse . Having said I'm on Rux that may not be true as being on a double blind trial means I could still be on HU , I won't find out for another five weeks . But because I've gained weight going from 49 to 53 kg and my bloods are stable my consultant thinks I may well be on it . Tiredness is still a very big issue . As a former staff nurse I hope I'm on the ball health wise and am aware there are some problems occurring with targeted chemo . Hope you continue to do well . At the age of 56 my motto is no surrender .

[JediReject]

Good for MaestroM lovin your motto. I'm not a big fan of these randomised trials where you're 'selected' via a computer prog based on your stats. So like you say you may still be on the HU but you are experiencing differences and a big give away for me would be reduced itching and weight gain. Its still early days though for you my friend and I wish you luck along the way. Let us all know how you go on and I hope things continue to improve for you and you get a new lease of life. Cheers.

[maestromaverick]

Thanks JediReject . Just want us all to feel better even if its only small improvements .Good luck to you always .

[Twinkly]

Well I'm so glad I joined you all to chat ,instead of feeling just one ..I'm now just one of many ,,the forum in London was an eye opener wasn't it.?? Piggy ..you stayed off hydra and managed your illness I wonder how??for years, I wonder how many others are walking around with these problems ,,don't know till they have a stroke ,I find my diet helps me feel better,hate the rainy days of winter it does affect the mood,,I miss Downton on Sundays ,roll on Christmas ,nuts ,,,,

[piggie50]

Hi twinkly, glad you got on the site. I was diagnosed 8 years ago from a regular blood test I was having after taking a drug called pennicilamine for 12 years for my rheumatoid arthritis. This was prescribed back then rather than methotrexate as now. My GP noticed my red blood count was increasing rather then decreasing as it should and referred me to the hospital. I thank The Lord she was on the ball and referred me before I had a stroke etc. I have survived on venesections and Clopedogrel, mainly because I refused hydroxy, saying I would wait until I was 60. Well, 60 next June so have started it a bit early! Luckily I seem to tolerate it very well. I must say I stopped the pennicilamine when PV was diagnosed as my RA went into remission, I now just have occasional flare ups. I feel I am very lucky all round and just try to get on with my life as best I can. X

[Twinkly]

Piggie so good to hear from you .putting a face to a name at the forum was great ,I'm sure we all live such distances from each other ..your story sounds like mine in many ways ,busy life ..arthritis drugs ,,leading onto blood testing ,to find thickening and clotting .we are lucky to get the support of an informed medical service in our area !!i am optimistic for the future because of the trial,s. research ,so that's why I signed up nothing ventured nothing gained ,,I needed my energy back ,,I think it's happening ..

[JediReject]

Hey Piggie50 or should that be piggie 'approachin 60' LOL . . . You've just become one of my favourite peops coz as you can imagine by my pic with looks this good I don't get many compliments headin my way. Im happy that I made you laugh as I find it's the best 'drug' goin. I don't set out to do it on purpose it's just my head is rammed with randomness and plenty of blessed nonsense. So Thank You for your lovely comment. I too feel lucky and it was good to read someone else say that. I'm glad you tolerate the 'orrible hydrox. Love to you and keep smilin'. Cheers JR

[JediReject]

Dear Twinkly keep up your positive vibes coz you're a shining star and your dogs need you. You've enough to pull a sleigh there - I read there was a job goin but it was only one night a year , , clearly not enough to cover your vet bill. . Please keep us posted about how you're doin. Love and best wishes to you. JR.

[Twinkly]

Dear J.R.im very lucky ,I have an excellent team of medical experts helping me .they are on call 24 hours ,my trial nurse Micky ,should be in films ,he has the gift of enthusiasm he has been my confidence ,,the professor leading my team is more famous than elvis in his field and luckily he has not left the building ,,if it feels right,,go for it,, life is for living ,be well ..xxx

[geordie]

Hi all Just a note about my experience on the relief blind trial for PRV. I was on Ruxolitinib from the start of the trial there were downsides i.e. weight gain and cystitis, my hot seats did not improve much and was still itching but did not get so fatigued. However as time went on my bloods started to become unbalance and platelets went up from a controlled 250 to over 500. I started to feel really unwell. The dose of Ruxolitnib was increased but did not improve bloods. I have now returned to taking the hydra and have noticed that the itching is worse than before starting the trial the hot sweats are the same and severe fatigue has returned, but my platelets have started to decrease. I think my body learnt how to get around the drug so the Ruxolitinib was not inhibiting the growth of platelets anymore!

[Twinkly]

Hi Geordie ,thank you for your reply ,it's interesting for me to hear of a lady who has actually taken ruxolitinib ,I have check ups every 2 weeks in clinic ,my trial nurse the handsome Micky asks me questions ,I keep a diary every day ,my results went irratic at first ,but my professor was like a rat up a drainpipe ,he changed the dose ,now working with my diet ,my platelets have regulated ,so far so good ,Santa came early at our house this year ,he gave me some energy ,he was in a white jacket and corduroy trousers. Keep in touch ,,x

[JediReject]

Twinkly - you look so well. . Are you sure you're not just kidding us along ... I'm sure my mates think I'm 100 per cent and can go on 2 day benders which include golf, drink, horses, more drink. casino, yet more drink. night club/lap dancing. even more drink. . . But unfortunately I cant. .If I ever get such a 'healthly' looking pic of mesen I might sack JarJar Binks off but I must warn you I bear an uncanny resemblance to George Clooney. We could be twins. . .

[Twinkly]

To answer your enquiry Jedi reject ..I'm actually bald. From chemo ,,and have no teeth from abscess in my mouth ,so I sent a mock up of my gorgeous sister ,mmmmmm,your life sounds interesting tho ,,,

[JediReject]

Ha Nice one Twinkly. . Beauty is only skin deep anyhow. But I guess it's harder for a lady to cope with hairloss etc - ooh sounds a tad sexist but I don't mean it that way just to do with ones femininity and confidence and such. Anyway as you've demonstrated you are determined to live life to the full. Good for you. Enjoy your day, Im poppin out to do a bit of shopping - nothing exciting - and will then pop to see me dad so sorry to disappoint but my life really aint very interestin. . Take care

[Twinkly]

Visiting your dad now. That's exciting ,,hes a mine of education I bet ,,value him my lovely ..my dad drove steam engines out of Norwich ,always smelled of coal .great memories .im half Romany so I tell it like it is ..

[fiddlelady]

I've been on it for a year or so and didn't know there was a trial out there for it. I'm game, let me know your details and conditional expectations and we can go from there. Thanks, Tina

[Twinkly in reply to fiddlelady]

Hello fiddle lady,iv been on the Majic trial for 6 months ,,started in August 2013 ,I was offered to try this drug ruxolitinib because I was having horrible night sweats ,digestive and eating disorders ,fatigue made my life come to a slow pace ,I have nothing to lose my age is not helping ,my immune system is going to sleep ,I'm a strong minded granny so bone marrow was tested twice in a year scans and tests were done .then sent to st Thomases in London ,I was told my results made eligible so off we went,5 a day .i keep a daily diary ,go often to clinic to give reports.now I'm great,my life is back.i judge and show dogs travelling lots but not abroad anymore,I eat really strict diet,noooo prosesed food ,green and healthy .lots of juice.rest when I need to. Swings and roundabouts.my team at the hospital are really pleased with my results ,no venesection for 6 months,my one wish is for all to at least be offered a trial ,and have the option to say yes or no!!

[TxTwin]

Cost! My doctor wants me to start Ruxolitinib with one month free but no guarantee for

future cost. My insurance co says that it will cost me $1500 a month which would cost

$20000 a year. This would be an incredible burden on us. I'm hoping that after a

couple of years on Hydrea the cost will go down.

[Twinkly in reply to TxTwin]

Where do you live? I guess it's not in the u.k....tx.twin .from reading your reply ..do you have a back up group like this one ??

[tommy123]

thank you thinkly i think i have a buddy now

[Twinkly in reply to tommy123]

Hi tommy123 I'm very happy for you .now you can ask your questions ,someone will be there to listen ,you will have a buddy,,..xx