New to MF

[Vancritch]

Hi I have et and recently been told It has progressed to MF. I'm to see my consultant on Monday to get the results from my bm sample n blood work. and talk about treatment for the first time. are there any particular questions I need to ask apart from the normal ones and prognosis etc. all I have been told is that my bm sample was mostly reflective of et but mf was present so apparently its early days. I'm not really sure exactly what this means and they have told me they will change my meds as I have an enlarged spleen and I itch like crazy. which I appreciate is not the look I'm going for. I also have RA. any advice or tips on questions would be great

[Rachelthepotter]

Hi. I too have MF, and was diagnosed in Jan 2017. If you have to have MF, this is probably a better time than any to be diagnosed, as there is a lot happening on the research front. I was given ruxolitnib ( Jakafi) because I had a bad reaction to hydrea, and apart from making me anemic ( for which I take erythropoetin injections and have the occassional blood transfusion) it’s been keeping me ticking over. Prognosis is a minefield, but there are various scoring systems that give you a risk category. I’m Inter-2 on DIPSS plus, for example.

If ruxolitnib an option for you, I’d go for it, especially as you have RA. Which I take it is rheumatoid arthritis Ruxolitinib was originally trialed as a drug for RA, because it’s a very powerful anti-inflamatory, but the side effects weren't acceptable for RA, as there are other meds around. If you do get prescribed ruxolitibib, it’d be interesting to see if it helps the RA.

Keep posting - it helps.

Rachel

[MFBMT2011]

Rachel has offered some good info’ for you and I am sure others will chip in. It would help if you gave a bit more basic background on yourself like age, where you are based, where you are going for treatment etc as there will be different options and this will help others align with you.

I had Myelofibrosis and had a stem cell transplant (the only potential cure) eight years ago in London in the UK. I am a 66 year old male. This SCT treatment is age and country related. Similarly some drugs are available to help with symptoms but this can depend on country.

Such info won’t identify you but might help others be more focused with their reply and this will benefit you.

My only advice based on current info (and apologies if I am teaching my grandmother to suck eggs) is take someone with you as four ears are better than two, make a list of questions and tick them off as you cover them, scribble some basic notes between you and review them afterwards, ask your questions as there is no such thing as a stupid question other than one you wanted to ask and didn’t!

Good luck for Monday

Chris

Ps The basic info request applies to everyone. It can be slipped into your initial post or profile.

[RobinBrum]

I'd agree with Rachel. I am post-PV MF. I would keep a very careful watch on your haemoglobin levels from now on, as with MF your bone marrow will start to produce less red blood cells, leading to anaemia and tiredness. If you have hg measurements from the past, log them too so you can see how you, er, progress. I was originally on hydroxy for PV, and, after switching into MF, they kept me on it well past the point when my hg levels dropped off a cliff. Finally, I was taken off hydroxy, and given a couple of transfusions and weekly EPO shots. Result: a slow recovery in hg - not up to previous levels yet by a long chalk - but a much stronger sense of well-being. If you are simply in the foothills, as it seems you are, it might be worth discussing this option and other choices with your consultants.

All best wishes. Arm yourself with information!

Robin

[Vancritch]

Thank u all.this is really helpful info. I'm currently on hydroxy 1500mg a day for my et. Plus an aspirin. I'm 40 n was diagnosed with et at 25 n ra at 16. My spleen is enlarged n they said on the phone that they will change my meds. My pts have always even on the dosage been around 700 to 450 ..they bounce over 1000 in a few days when off hydroxy. However last blood test in Jan they were 345. The lowest ever. I've always been a bit anemic. But theses last 2 weeks I've felt exhausted...maybe stress n anxiety too but it just hits me during the day n I'm just done. I will ask them tom about my hb levels n keep a note of it from now on. I live on the north west of England and go to Manchester royal infirmary. I've managed about 2 pages of qus so far n someone is coming with me. It's really helpful knowin ur not alone in this journey. I'm tryin not to become obsessed but defo take ur point about arming urself with info. So if u have any pointers in where to start I'd be greatful. I've watched the pod casts but I guess it's more about treatment options n trails. Thank u for replying, telling me about it situations n the advice I really appreciate it.

[JediReject in reply to Vancritch]

Hi Vancritch, , I had MF diagnosed 2006 and like the other Chris had a Stem Cell Transplant, mine was 2015. I just wanted to say I attend haematology at MRI once a month now on a Thursday. My next appointment is 14th March. I haven't met anyone else at clinic in 4 years that has MF . . .

It's good news that from your biopsy you appear to be early stage because as Rachel points up there is much more research now, certainly more then when I was diagnosed so you should have drug options for the foreseeable future and beyond..

Good Luck.

Chris

[Vancritch in reply to JediReject]

Hi Chris

its nice to hear from you and to know you go to the MRI too. how do I email you separately as I was going to ask who you see as in your consultant and how you have found them. I used to attend a clinic on Friday mornings in outpatients but now I'm on the ward. I'm new to this website and not found my way around it yet. feeling like a bumbling egit...

Clare

[JediReject in reply to Vancritch]

To pm me just press on my profile pic here and select 'message' top right screen. You can then set up a chat link . . . I'm sure you're no egit as you put it. I'm happy to answer any questions best I can.

Chris

[Rachelthepotter]

I agree with what both Chris's say (the are two of them, both have had SCTs, and I found it confusing at first. )

I'd add: as well as writing down your questions, get the doctor who sees you to write , in the same book, what you need to do next and how the system works.

So, suppose you are told that you need to have another appointment in 8 weeks time Get the haem to write that down, and explain how it happens: will they contact you, is there a number you can phone, (or even an email address - much better )(ask them to write that down) If you need a blood test before the next appointment, ask how far ahead it can be done so that all the results will be there to discuss (and ask to have that written down too).

I hope yo have a CNS who can help to steer you through the administrative minefield, as well as being a person to talk to generally .

rachel

[Swede]

Hi,I also live in the NW.But I have so far gone to Royal Bolton Hospital. Now I am referred to Manchester and Doc Mohamed Saif.

[Vancritch in reply to Swede]

I'm due to see him next Friday to talk about a transplant and gather more info. I know its further for u to travel than Bolton but they are a great team. To be honest they have really looked after me so far.