Ruxo for mf cost? Nhs?

[Rachelthepotter]

I have just been diagnosed with mf and have heard about ruxo. Is it helpful from the start? What does it cost if the nhs wont prescribe it?

[JediReject]

Hi Rachelthepotter , , firstly I'm sorry to hear that you have been diagnosed with MF , something I have a lot of experience of. Whether or not Ruxolitinib would be available to you will depend on what stage your MF is at. I would guess and hope you are at a very early stage and might be on watch and wait or prescribed Hydrxycarbomide to manage your blood counts.

Generally Ruxolitinib is available via the Cancer Drug Fund as a box of 56 cost roughly 3k. A years treatment up to 40. So not a cheap option which is why it tends to be given at the intermediate or more advanced stage. This may have changed after the trials for PV but I'm not sure. I knew a guy who used to fund his own long before it became available in the UK but he was very wealthy and flew to a clinic in the States for his treatment.

I hope your Haematologist has explained MF and your options to you and you are feeling ok. It is a real shock when you are diagnosed and takes a while to sink in. . . But you will be able to get support on here when you need it.

Chris

[crapaud in reply to JediReject]

I do not have any experience of Ruxolitinib used for MF - only as a treatment for GvHD (a treatment that is seldom used)- however if my personal experience is anything to go by, then financial questions aside you should not lose sight that this treatment is not like taking aspirin and will be require a thorough medical surveillance.

Best of luck

Crapaud

[Rachelthepotter in reply to JediReject]

Thank you very much for this, Chris. At the moment I've just started Hydroxycarbamide. I seem to have skipped the watchful waiting phase. I summoned up the courage to ask for a second opinion from Professor Harrison's team, and am now waiting for the referral letter to go out. And then for a reply.

At the moment I'm in a bit of a fog, and trying to get information together. I'm hoping to be referred to Professor Harrison soon. Just waiting for the referral letter to go out, and then wait for an appointment. But I do get the impression that things develop quite slowly with MF, so there isn't the same sort of urgency that there can be with other cancers .

Thank you again

Helen

[JediReject in reply to Rachelthepotter]

Yes Helen it can indeed be a slow burner , but it can affect each of us in different ways. But generally there are a recognised set of symptoms. The drug Hydrxycarbomide is widely used as a first line treatment for MPNs and is usually very effective in managing blood counts if not some of the other symptoms such as itching or spleen enlargement (it may have slowed mine but no proof, it didn't reduce it) . The Hydrox can cause mouth ulcers and increase fatigue for some. You usually have to juggle the dose to find what works.

You're going to get first rate advice from Prof Harrison and the team at Guys so I would wait and see what they have to tell you. There's a lot of outdated stuff on the Web. Don't forget to write down any questions or concerns you have to get the most from your appt.

Chris

[eire]

Hi Helen I have MF and have been taking rux for over 4 years now. I wasn't suffering from any particular ailments when I started the drug just the usual fatigue. The rux was given to me as I was on a clinical trial taking the drug panobinstat as well. I had an enlarged spleen which shrank a little when I took the rux. Rux is given straight away in Ireland once you're diagnosed with MF- if needed obviously. Good luck and we're all here to answer any questions you may have if we can.

[Rachelthepotter in reply to eire]

Thanks, Eire. Its very helpful to know what other health systems do

Helen

[skodaguy]

Rux has been authorised for use in MF by Nice for stages high risk and high intermediate risk. However it is useful for symptom relief at any stage and whilst not curable reduces mortality. I have been privately told that the effectiveness of the reduction in mortality depends on the total lifetime dose. It is around £35-40000/year.

One problem of buying it privately is that some health authorities view that as private treatment and will not allow you to mix NHS and private treatment for the same illness so you end up paying for the costs of monitoring such as blood tests BMB and consultant appointments etc which puts the cost up hugely.

Also rux doesn't work for everyone, ask Jedireject. MFis also an enormously varied disease both in its co-morbidities and personal manifestation. Thus the side effects of rux vary from person to person.

At the end of the day you have to make your own decisions and if there are not facts to help trust your instinct but you could spend a lot of money for no benefit if not careful. If you are near London ask to see Prof Claire Harrison who is the UK expert on MF.

[Rachelthepotter in reply to skodaguy]

Thanks, Skodaguy. Do you have a link / refernce for the reduction in mortality result?

Regards

Helen

[skodaguy in reply to Rachelthepotter]

It was told to me in confidence by Prof Harrison before she presented the evidence at a European conference about 4 years ago so I presume it will be in a published journal somewhere.

[jeanr in reply to skodaguy]

nature.com/leu/journal/v30/...

skodaguy

I went looking and found this link . Jean Winnipeg

[Rachelthepotter in reply to jeanr]

Hi Jean

Thank you for the link. I'll print it and read it carefully . The DIPPS plus staging gave me a 3 yr median survival time , which may put me in zone But I dont have many symptoms yet

Are you actually in Winnipeg? I ask because my sister and brother in law both now live in Winnipeg. He is a recently retired haematologist/oncologist. Which may be a help for me.

Thank you again.

Helen

P

[jeanr in reply to Rachelthepotter]

Hi Helen - Yes I am in Winnipeg (morning temperature -26) I am interested to hear re your retired brother in law---did he practice here in Winnipeg ? Definitely interested to hear more. It took me a few days to see the notification so sorry for the later reply ..

Jean

[jeanr in reply to skodaguy]

I read your reply, and wanted to understand the comment re the mortality and the total lifetime dose. Does that mean that the longer you take the drug the less effective it is in reducing mortality or have I got that wrong is it the reverse? I'm interested to learn as much as I can. Jean in Winnipeg

[skodaguy in reply to jeanr]

No it means the longer you take it for and the larger dose you take has a greater effect on mortality. i.e. 20mg bd for 2 years is better than the same dose for 1 year.Obviously it slows disease progression but is not a cure

[jeanr in reply to skodaguy]

Thank you - interesting to know.

[jillydabrat]

My haemo was discussing this at my last appointment and she said it costs the NHS £45,000 per year per patient. I was nearly floored when she told me and actually felt guilty that if my lung x-ray and heart echo test showed I my hydroxy was causing problems then I would be put on it.

[beetle]

I have been on Rux for nearly four years. I also felt guilty about having such an expensive drug. I also wondered if I dropped one down the sink if I'd feel obliged to dismantle the plumbing to retrieve it😂. I have found that the drug has kept me relatively stable during that time except for increasing need for red cell transfusions- possibly an inevitable part of disease progression. There is no known cure for MF except for stem cell transplant which is not an option for me. Because I am starting to feel the disease is now having more of an impact on my daily life now (5 years after diagnosed progression from ET of 17yrs) I am beginning to look at possible drug trials and will have a discussion with my haematologist tomorrow.

One thing that is repeated over and over again on this forum is how different we all are in terms of symptoms, progression etc. Seeing Prof Harrison is always a good idea as she has so much knowledge and experience - and is so nice with it! Hope you don't have to wait to long for your appointment and take a list of your questions with you. She doesn't make you feel hurried.

Best wishes, Jan

[Rachelthepotter]

Thank you so much., Jan. I feel such warmth and kindness from everyone who has responded. It makes me cry, but in a good way.

My consultant here at the East Surrey is referring me to Prof Harrison. Don't know the time scale yet.

Helen

[Hmc1]

Hi all I am new to this site my dad was diagnosed with MF intermediate 2?

recently and had low haemaglobin and started on eprex injections to maintain hb rux was not recommended as he had low hb and the doctor felt it could reduce his hb make him more anaemic? Does anyone have any experience with this? Dad due to have appointment to find out more about BM stem cell transplant. Has been told does not have enlarged spleen but having upper left side pain and due for another MRI. Has repeated gout infections also.

Many thanks

Bec