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Sad day...progressed to MF

I went to my doctor yesterday and I have now progressed to MF. I am not prone to depression but this is more than I can bare. The doctor referred me to a SCT specialist so that is rolling...but it still is daunting.

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So sorry to hear your news. I'm sorry I can't help from experience but just wanted you to know I'm thinking about you. Sending E hugs and hope things go the best they can. I'm sure Chris or some of the others who have gone through this will be of more help but here for you if you need someone at any time I can be. Kindest regards Aime xx

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Thank you,that is kind of you

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Hi swede, yes indeed it must be awful to have been told that. I take it you had another bmb? Has a member of this site you know people can still have a good quality of life with the right medication. Have you been put on any new meds? I'm sure someome who as progressed to MF, will be able to offer you advice on it. Maybe you can ask Maz for a buddy who's gone progressed like yourself. Wishing you all the best.🤗

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Thx,I am still on Hydrea but Ruxolitinib was mentioned

Yes,another BMB just a few weeks ago...

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In my prayers for you, take heart, keep strong , we all are going through something similar and will support you with in your new fight, go kick it's butt. E Hugs to you. June.

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So sorry to hear that, Swede. I don’t have MF but When I progressed to PV from ET I got depressed so your feelings are very understandable. We are all here for you.

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Hi Swede, so sorry to hear this, let me know if there is anything I can do to help. Best wishes, Maz

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Thank you. I will remember that.Good to know.

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Hi Swede. Earlier this year I progressed from Et to MF. I'm just 8 weeks in with ruxolitinib. It's not been an easy ride up to this point but when it gets too much n I feel scared I hold on to the fact I'm not about to die tomorrow n prognosis is a minimum as there is so may new things coming up which can help. I have a swollen spleen, I've lost my super power of clotting fast with et when u cut urself n now Ijust bleed. I've bone pain but I know why I have it. I've had one transfusion n very anemic. Throughout it all I've worked full time. That gave me something to focus on. I needed as much as possible for life to be what I was used too. What has helped me is to read up n understand what's going on. I'm off for a second opinion next week n also to see a transplant guy next week too. I want to dicuss my options. Post n talk on here. Ask for coping strategies...were all different. My inspiration came from some one in Florida n Chris. U really are not on ur own n what u feel is how u feel. Talk to ur Macmillan nurse too they are fab. There is so much new stuff on the horizon. There really is.

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Diagnosed with Myelofibrosis (straight in no et or PV) nine years ago and had transplant in uk 8 years ago. Happy to help if you would like info on SCT. Not the only one here

Chris (non Jedi reject)

Ps also just saw the headline for an article covering someone deciding between medication and SCT on a MPN for Patient Power article. Worth hunting down for you and anyone considering.

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Hi,thank you.Yes,tell me ALL you know please!Well,if you can and have the time that is...thank you.

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Sorry I hadn’t responded promptly but I want to give you some links to provide information and it isn’t easy on the phone. Here is my story up to and through transplant. I will do another that takes you to a utube video discussing sct by an excellent American Doctor.

Happy to answer ANY questions you might have.

Chris

Chris BMT

Zhen | July 1, 2011 at 12:04

B>TO B(MT)OR NOT TO B(MT), that was the question.

by Chris Harper

Happy Birthday to me

Happy Birthday to me,

I celebrate this birthday

with…………… Chemotherapy!

Hi, I'm Chris, 58 years old reasonably fit as I like to run and kayak, and am fittest of my friends and family in my generation. In April 2010 I was on post Xmas diet and was feeling how slim I was when I noticed a lump below my rib cage that didn‘t fit with how I remembered my human anatomy. I went to the doctor on Thursday. But not before having a search on the Internet and frightening myself silly, thanks Wiki! “Mobile spleen”, my doctor’s registrar said “but we will send you for a scan”. On Friday, the radiologist started his ultrasound and asked, “Had any blood tests recently? No, ok, we will do some as a Haematologist is coming in this afternoon and your spleen is enlarged”.

I was called into see the Haematologist on Monday. “You have Myelofibrosis (MF) and low Haemoglobin (HGB); I can see it in the blood tests”. I had read about MF, acute and chronic so what does that mean. “Let’s do a Bone Marrow Biopsy, and then discuss it.” On Wednesday, the Biopsy was done under local, slight ping as Haematologist nailed it but not an issue. Now even better read on the internet, I asked for a prognosis. “Results in 10 days, then we discuss that”. But the Haematologist is not available for four weeks so I must wait! My Doctor checked when the results were due and relayed the Haematologist’s view, I would be okay until Xmas (8 months away) and then all bets were off.

Lesley and Chris, Whale watching

Try relaying that to the wife, kids and extended family! Three weeks of starting to pack up to leave things tidy for when I depart the planet!

When I saw the Haematologist they talked about MF and the few patients they had with it, while I asked various questions. “Drugs can mitigate but not cure and bone marrow transplant (BMT) is unproven and highly risky”. I asked about prognosis and was asked “Do you really want to know? “ Many words came to mind but I settled for yes! 2-8 years survival, median 5 and you seem better than median. “Would you like a second opinion?” Yes! Referred to leading UK specialist, and the one I wanted to see. My last comment was I thought I had less than a year, “Whatever gave you that idea?” I was too emotional to find the appropriate words and left the hospital in a part stupor.

My choice of specialist related to an email Lesley sent in our first MF research. Sent to the MPDVoice website with a query, we were referred to a doctor and got a brief guiding response from a UK renowned specialist the same evening. That was the person for me, Claire Harrison!

The bottom line on BMTAt the MF consultation in July I got good background information and a simple statement of fact. “Drugs can help but not cure and work well on some but not everybody. BMT is the only potential cure but has risks. You are reaching the top age limit for a mini allogenic BMT (in UK) and your fitness makes you a good candidate. If you were my father or husband, that is what I would recommend for you.” This simply was another confirmation step on a decision Lesley and I had made after our early internet research. “I will refer you to my friend at University College Hospital, best in London.”

The BMT consultancy in September was reasonably straightforward. I got the details of the process, short, medium and longer term, the survival odds and many questions answered. One in 5 does not survive the process. Risk of failure or relapse is also one in five. Three in five are successful. Then there was the risk of Graft Versus Host Disease, to various degrees, afterwards. Overall nothing new arose, and impressed by consultant and specialist nurse co-ordinator, I agreed to go ahead at this meeting.

The process begins

We needed to find a donor so my two sisters were checked first but didn’t match. Several weeks later the co-ordinator phoned and told me I had a 10/10 match for January. Next we had two failed attempts, one couldn’t match dates and on the second I started a cold on my first day, which stalled the process until, the end of February, where my chemo started on my 58th birthday.

I checked in to my first room on the 16th floor of UCH.I could see the flats where I was born less than a mile away! Then I was moved to a room overlooking the city of London from where I could see locations where I had spent half of my working life. This was so I could be near the nurse’s station for special monitoring as the chosen drug regime (the gold standard for MF in Europe I was told), Fludarabine, Busulfan and then ATG (Thymoglobuline) is not used frequently as they have lots of BMT patients but not that many with MF.

Bushwhacked

Six days of intravenous chemo, then three of ATG conditioning. It seemed easy until day 7 at 1715 when my body was bushwacked and I went into a twilight zone of headaches, sore throats, diarrhea, hourly loo trips, shivering and many other unpleasant reactions, with very little sleep, for the next 3 days. Things started to settle on the day I got my new stem cells and then I had two more twilight days before starting to improve. Whilst I found these days very difficult I simply remembered what the doctors had said “You are going to feel more ill than you have ever done before” . They were right! Some days I ate, others I didn’t because I couldn’t swallow (ice lollies (popsicles) were great for my throat). Now began cell watch as we watched them drop so that I became neutropenic and then rise. The counts for HGB, Platelets, Neutrofils and White Blood Cells, would help determine my release date, alongside my general health.

I got apologies from doctors and nurses for doing various bits and pieces at all times of the day. My response was always the same; you are saving my life, do whatever you have to do whenever you have to do it and I will handle it. Even though I was often wired up intravenously, sometimes for a few days, I got up every day as much as I could and they had to find me a 15 minute shower slot every day. The nursing staff team, truly multi-national, were brilliant. Always cheerful, friendly and supportive, nothing was too much trouble. However, my best nurse was Lesley who stayed and slept on a sofa in the room, or during my twilight days sitting in a chair sleeping with her head on my bed.

Lady Cells gradually improved and I noticed that a week after receiving my donor cells, my spleen had reduced from five fingers below my ribs to one, something I was told would take weeks. I thought that things were going slowly and perhaps I had received my donor stem cells from a female who was now “late for the date”. One of the doctors confirmed it was a lady donor, the only information I was allowed. Lesley hoped that this would help me like going shopping and watching Grey’s Anatomy, but I explained to her that there were simply not enough lady cells in the world.

Going home On day 15 after transplant I was changed from a mixture of intravenous drugs and pills, to just pills, but forty a day! Two days later I was told I could go home, loaded with emergency contact numbers, but would be attending regular clinics. Standing in the hospital reception, waiting to go home, I felt the four weeks spent in hospital drift away as if they had not happened.

I left with a limp as my big right toe and left knee both became very painful with 3 days to go, believed to be an inflammatory response related to the return of neutrofils adhering to old wounds.

I couldn’t do much at home as I felt really tired and cold all of the time, frequently shivering despite multiple clothing layers, reasonable weather and the heating on. Walking was still an issue and I exacerbated this by jarring my back by missing a step down. I really walked like Quasimodo for a week until that settled. I found that my taste buds were shot and some favourite drink/food was no longer palatable.

Recovery—cold truth So began regular hospital check up visits, every Monday and Thursday, a very early start as I was given private transport by the hospital to protect me from infection. I had an additional day most weeks if I needed blood transfusions for low HGB. I had a number of continuing minor problems like shivering, tiredness, lethargy, dry mouth, that, toe excepted, were par for the course. Overall I was told that I was doing well for so soon after transplant and had been the third quickest out of hospital for my treatment regimen. During this early period I had good days and bad days, being able to walk for an hour one day and having no desire to walk anywhere on another. Being cold and shivering were a constant. Sometimes I could concentrate and do things and others not; this was probably due to chemo brain. But as time has progressed I felt better.

Almost normalI am now 12 weeks post transplant and for the last three I have felt almost normal. My son has taken advantage of my new found energy and I have been decorating, plumbing and doing other DIY activities in his flat without feeling tired.

My HGB is continuing to drop slowly but I haven’t had a transfusion for three weeks. My Chimerism - carrying two types of genetically different cells - was checked and two of the three main cells, T and N, are 100% donor with some residue of me in the B cells; the likely cause of HGB issues. The doctors can see immature cells in my blood, a clear indication that my bone marrow is getting started. I did have level 4 scarring of the bone marrow another potential factor in slow marrow development. People criticise the National Health Service in this country but I have nothing but praise for the doctors and nurses I met along the way and the treatment I received. Even the food I received was okay!

I used the MPD chat site to get information in the early days and now have more friends around the world. I now write a small email based blog on the site to give back and share with others considering BMT; currently there are at least six.

.Small price to payI have lost weight, muscle tone and of course hair which continues to go and I will soon be completely body bald like an oven ready chicken. I am very careful who I mix with and stay away from young children, and their parents/grandparents as my immune system is compromised and I must wait 12-18 months before I can be re-immunised against childhood diseases. I must not mix with people in close proximity or use public transport so am restricted socially but I consider this a small price to pay. I still have a long way to go but feel confident about the future.

Biography

Chris Harper, 58, live near London. Very happily married to Lesley for 36 years we have two sons, Ben and Matt, both Policemen. Worked for the same company for 33 years in IT, 13 as a senior manager, but took early retirement seven years ago when I felt that hard work, integrity and fairness no longer counted for anything. Now spend time helping family, friends and older company pensioners. I have completed three London marathons raising money for charities and plan another when recovered. I enjoy skiing, kayaking and world-wide travelling, the rough end - backpacking and overland tours

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Amazing story, Chris! It shows what courage, determination, and a positive attitude can do for you.

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Amazing story, best wishes!

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Holy mascarpone! Thank you for writing all this down for us.It was like a film!Starring as Chris :Harrison Ford and as Lesley, Emma Thompson....

I am very glad you are where you are in your health-trip.

Puh...I need a lay down now...🙋‍♀️

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Since my SCT I can do Danny La Rue!

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Aaaaaaaaaaaaaaaaaaaaaaaaaa.........................................................................................

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Here is the link to utube. I have pasted it in so hope it works. If not I can email it

Chris

youtube.com/watch?time_cont...

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If you have not had recent BMB how has your Hem dx MF?

Discussing SCT options seems a bit drastic? Hopefully you are early MF and therefore at least a few years away from this dilemma?

Sorry you are have to go through all this

Best Paul

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Yes,I had a BMB in March.I do agree with my doc that I should see a SCT doc as then I know all about it and know if I am a possible candidate.But hopefully you are right in that MANY moons from now...it will be needed.

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Keep strong Swede,you will get thru it,these worries are awful,thank goodness now we have Rux,there is so much improvement medically now.

Thinking of you,sending all my Best Wishes to you.Sally

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Hi,Iwhat do you think about Ruxolitinib?Thoughts?

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Hi Swede , , I recall you joined the Forum very early on around the same time as me, , and I'm very sorry to read your news. Like the other Chris (MFBMT2011) I had no transformation to MF so I don't know how different your situation is to mine in terms of progression. But as others say I hope any additional or enhanced effects can be managed well with your HU for a long time to come.

Don't worry about your referral as I think with some Hems it's routine practice as I was referred to a Specialist very early on to run more tests and get his opinion. So not a bad thing maybe. And at that time my symptoms weren't very encouraging for a longer term outlook.

Regards and good luck going forward

Chris

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Mmmmm...I am sure I can adjust and take things in but right now I am so sad.I guess i must let that hapoen first and then gain more power and energy... may I swear ?ok.. I will do it at home,shout and swear..cry..and all that will need to come put...for now

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Hiya hunni Iam so sorry to hear your sad news I know how hard it is I have primary mf and was going for a stem unfortunately due to the fact I have varices and portal vein thrombosis the doctors won’t do it I asked for a second opinion though as I refuse to give up I won’t lie and tell you it’s easy it really isn’t it’s really hard but what can we do we have keep going I was 24 years old when I was diagnosed and if mf has taught me anything it’s what’s important family and the people that love you i always find comfort in them if you ever need a chat please message me and I truly wish you luck xx

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Oh, did the varices and PVT make them turn you down? Did they explain why?

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Yes having pvt and varices makes you high risk and they won’t take the risk he said that no doctor would when they start bringing your platelets down you have a higher risk of bleeding to death and and those complications increase that risk further they aren’t even willing try but Iam hoping a second opinion will help

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Yeah its fine, , I totally get that and I went through similar emotions, , and still have a rant now and then. 😨 we wouldn't be human if we didn't. . . .

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Sorry to hear your news, but SCT can be a cure for MF. Sending good wishes and hope the news is good in finding a donor.

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Thank you .I hope one of my 12 siblings can do it!

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I would just like to say that I’m really sorry to hear this. My thoughts are with you.

Mary xx

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Thank you. You are so kind!

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There is so much support on here,

Wishing you all the best and pls stay positive , like everyone said earlier there are new things coming our way all the time ......

Sending love

Ela

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Thank you. I feel I have support here!

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Hello Swede , I am sorry you have progressed to MF .There are so many kind people on here who will share their knowledge on this with you.Take care .Bye Gill

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Thank you. You are kind to even answer so I think you as a good friend as well!

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Hi Swede,

I will pray for wisdom and clarity of mind in this new situation. You will move forward step by step with the help of your doctors and with us! Summer is coming. Take nice walks and enjoy the good things in your life, that are plentiful, no matter how small. They will keep your eye on what’s important. Lots of love. Anag

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Hi.

Thank you for that. Regarding the walks. my hip is so painful so my walks are very very short.In other words not called walks.

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I have knee pain (ski accident) and a bit of an arthritis I. The left hip as a result. when it acts up (or any other pain), I reduce the inflammation with 2-3 g of turmeric powder, with a bit of pepper to activate, a few drops oil (fat soluble), a cup of warm rice milk and a tsp of honey. Works wonders and does not have side effects. Worth a try. Also a knee bandage helps to support. Have a nice day Swede. I will be thinking about you. 🙂

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I have just read up on turmeric and there is no evidence that it really does help...but I am happily willing to be wrong here! I will talk to my doc. Thx

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Oh it helps!! I don’t need studies, but there are thousands of studies. The Pharma industry can’t Patent turmeric or Curcumin because it’s a natural product and it doesn’t like not selling it’s products. Therefore, it is necessary to find the info on the natural websites. It helps my friend’s Ischias, my husband’s toothache and psoriasis arthritis, my daughter’s menstrual pain and my headaches and pain after tooth extraction. It’s beautifully anti-inflammatory. I can bend my knee better afterwards. My brother uses it for his shoulder and hip pain. It also helps to kill mother cancer cells (Curcumin). It’s used as an assisting therapy to chemo in many clinics in the US since many years. One of our “brothers” on this page said since he takes this daily, his thrombos have remained the same. I will start with this experiment on myself very soon. Who knows? I will try for at least 9 months to be sure. Have a super weekend Swede. 🙂

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I do know it is thinning the blood...

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I’m so sorry to hear your news and to hear how it has made you feel. As others have said the MPN horizons in terms of understanding, management and drug intervention are forever expanding. So please, hold on to your optimism. I wish you every strength.

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Thank you. I am trying my best...

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sorry to hear this, swede. i have no idea about the progressed to MF. but i would like to send you my prayer..and e hug...heep strong swede....vivihtp

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Thank you, that is kind of you!

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Hi. I’m so sorry that you have developed MF, and that you feel sad about it. Once the reality sinks in I hope you find a better place emotionally . One of the things I appreciated about this Forum was that people are honest about their experiences - which means the unhappy ones as well as the good ones. It sounds as tho you are being cared for by a good team, so will be able to get good medical advice as to the best way forward for you.

Having 12 full siblings ( did I read that right?) gives you a good chance of a very good match if you do decide to go down the SCT route

I have MF, and no full siblings, and for various other reasons don’t think I’ll be likely to want a SCT : but I hope that you can make your own decision in peace of mind when the time comes.

Rachel

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Hi Rachel, well, yes we are 12 but I have read and read and read....I dont think I will be a candidate now...but I will of course see the specialist to have that talk...

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Dear Swede

Ruxolitinib helps me a lot, although I get very fatigued still. It lowers my HGB, but at the moment erythropoietin injections help that. If you are offered rux its worth a trial.

Regards

Rachel

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Dear Swede

I progressed to MF just over six months ago - a horrible shock! I was transferred to a different haemo at a central London hospital, had another BMB to confirm, and put on Ruxo. It has really worked well so far. Gone are the itches, night sweats and to a certain extent the dreaded fatigue. I do, however, have to have regular monthly transfusions as the Ruxo lowers the HB as well as my blood not being produced in my marrow. Very few side effects except occasional bouts of diarrhoea.

Sadly I am not eligible for a SCT as I am.too old (80!). You are fortunate in that you will probably be given one, with.the prospect of a complete cure. Stay optimistic - I find it helps to just carry on as if I haven’t got anything wrong with me.

All the best

SkipperL

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Madre mia! How did you cope with that? You must be a strong person. I understand that Jakavi only takes away the symptoms, it does not treat or so, am I right?

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As I understand it Jakavi only treats the symptoms - the only cure is a SCT if you survive it! However I am lucky enough to have been given the drug, as it is so expensive- - especially at my age. If I time the monthly blood transfusions so that I am feeling really well I can go away - and at the moment I am in the South of France eating and drinking and thoroughly enjoying myself. All the best

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This is an order: ENJOY as MUCH as you can!!!!!!! Take care...take later...

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Thanks

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Hi Swede. I am so sorry you have had this news but as others have said things are changing all the time with MPN research so we can look forward to hearing about new treatments etc.

When I found out I had MF via a phone call after my usual three monthly appointment, I felt like someone had just hit me in the face with a brick. That was last October after about twenty years with PV.

I am not known to cry or panic but, like you, it did make me very sad. The hardest part was telling my husband and three grown up children.

Anyway, once that was over I took my future treatment into my own hands and changed hospitals (who with any compassion would give you news like MF over the phone?)

I now realise I should have done this years ago as the team at my new hospital are fabulous 😊.

Which area do you live Swede?

I also decided it would not change my life if I could help it. I still travel to Portugal for a couple of months at a time a few times a year and enjoy my life.

How old are you Swede and do you have any outstanding symptoms? My only thing is fatigue but because I am retired I can manage it.

This disease will not define who I am Swede and there is no reason why it should define who you are. I have to admit I am a control freak and so it makes me feel much better being in control of my future as much as I can 😊

Good luck and stay strong!

Lesley x

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Hi lesley. There are two Chris’s and a Swede in this post so not quite sure if you referred to me with your questions, but if you did I live in Watford and was treated with SCT in London. I am 66. Touch wood I currently have no follow up symptoms. I run and kayak and eight years out of SCT Just had some normal blood tests.

Chris (non Jedi version)

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Haha! Love it - non Jedi version 😊

Mind you the Jedi version is fabulous too 😊

I am in Newcastle so a long way from London. Did you get to see Professor Harrison at all?

I am so pleased your SCT went well. It gives hope to us all 😊

Lesley x

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It was the Prof to whom I went for my ‘second opinion’ after being written off by the local haematologist. She helped me along the SCT route that I wanted to follow. I go to MPNVoice regional meetings to meet MFers, when I am available, and do buddy work as a thank you for what she did for me.

Chris (the Princess Leia version with the lady stem cells)

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Haha are all you Chris’s so funny? In a nice way - you both make me laugh out loud. I went to the Newcastle forum last year but would be interested in the London one too.

I would love to meet Prof Harrison so I am sure I will one day 😊. I am past the cut off age for SCT but REALLY would like to keep that option open if I can. Lesley x

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You don’t look past the cut off age must be good airbrushing - not the type you do with a comb!

The big London forum is interesting and the Prof is a really lovely lady.

Chris (Princess Leia, non Jedi version etc)

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Oh and charming!

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Out of curiosity Lesley, what is the cut off age for SCT?

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Well mhos61, on the day I was told I had MF I mentioned SCT and was told the cut off age was 60. At my new hospital they didn’t mention a cut off age at all and I know people who are on the register older than I am so I am keeping an open mind for the future 😊

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That’s why I asked, I’m sure I’ve read about successful SCT in the ‘more mature’ age group.

Age 60 indeed, that’s now the new 40 isn’t it? Glad to hear that you’re keeping an open mind, as I know from your past posts that apart from your MPN you’re otherwise healthy. That has to count surely!

Mary x

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You would hope so Mary as indeed 60 is the new 40 😊

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General health matters more than age and I think any cut off is higher. My cousin was being checked through for SCT at age seventy (for ALL not Myelofibrosis) but his general health - heart and kidneys - wasn’t good enough. In helping him research I spoke to a USA lady who had hers at 70+ with others of a similar age in her ward. However, it is a tough process and age probably adds to the risk factor. My eldest Uk buddies were both 69, one who seemed remarkably fit, had a brain haemorrhage before getting to SCT and the other did not survive the process.

Chris (Princess etc)

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Thanks Chris that is very interesting 😊

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Hi my friend , just for info I was informed the oldest transplantee at MRI where I had mine is 76 years young x

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Yeay! Knew one of you Chris’s would make me feel better 😘

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Hi there, I live NW Manchester . I am 63 and I dont really have too many symptoms...I did have fatigue like mad for a while and some sweats but now the really problem is my right hip. I am in pain and as soon as I try to walk or exercise it gets worse. I have had xrays so I know that nothing is seen on them. I actually finished working as we sold the practice and the new owner was...not liking patients!(mildly expressed) so I decided to hand in my notide. My husband managed to work a year and then he moved away from there as well. I now work just one day a weck at the same practice as he does (but I was asked before he started there!) and that I think, is just about right for me. We had a plan to move to Spain and my husband, call him D, got his profession approved in Spain and he even studied Spanish to prove he was serious about it as he had to talk to the "collegio " in Spain(the overall body for the profession). I spent the last 2 winters , months ...in Spain but now I dont know...I am now glad me missed the appartment we were just about to buy..

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I am sure this has not made you happy ...... but I can tell you two people I know who were MF plus and they went into remission after 3 and 5 years after diagnosis ........ so just fight harder ..... never mind if your back is to the wall ...... I tell you the mind is your greatest weapon ! Chin up friend :)

Regards

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Hi. thank you..remission? really? how? wow!

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How not known . One had come in to meet my hematologist when I was there. I have a complicated health situation with PV, GCA and Subclavian Steal Syndrome. The said remission person told me that out of the blue his condition went into remission - trigger unknown . In fact he was there to get a second opinion about the remission and it was confirmed to him as true remission.So the point is just believe in your mind power and be strong :) Now you could ask what are the chances and dismiss it as a freak thing...... but then it did happen right ? So chin up and walk on .....

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Madre Mia! Well well well...That sounds fantastic! Well, I hope it doesnt change and he can continue being well.

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So sorry for your diagnosis, it's something all us ET'ers dread. However onwards and upwards, you have been diagnosed so now on with the treatment, hopefully one of your siblings will be a good match for you. Keep fighting!

Best wishes for the future

Lizzie

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Hi so sorry to hear that news best wishes poppy

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I am sorry to hear this news and can vividly remember when I went through the same thing. It’s scary! I’m not a candidate for SCT and my MF diagnosis happened 7 years ago I am still going! ‘Strong’ would not really accurately describe my body but as I said to my haematologist I am still buying perennial plants😂! If SCT is the right decision for you then I hope all goes well although I know what a daunting decision it is. There are folk on here who have come through SCT with good results and the rest of us here are all ready to offer our support in any way we can. Best wishes, Jan

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Thank you! Yes, I am planning new carpets...and a new vacuum cleaner...! Yes, SCT seemed like a good idea but I now understand that I dont think I will be in that category for SCT.

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Hi. I can understand your sadnessituation. I was diagnosed with primary Myelofibrosis 5 years ago at the age of 49 years. Not pv or et previously. I have been on Ruxolitinib for 4 years now and it has certainly enabled me to live a fairly normalish life. Do not be too dowe hearted as there is a life with MR if you have a good team and are monitored closely. Best wishes.

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Sorry about spelling errors - phone keeps playing silly things on me. See there are other frustrating things in life too. Try to keep positive and a sense of humour helps you get through the worst times.

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Thank you. Yes, the prediction text have really made the mobile phone life a bit brighter!I have had to turn it of as when I write in Swedish och Spanish exactly noone would understand...Not even me! What do you think about Ruxilitinib? I dont really see anybody about my disease between my doctors appointment. Also, I dont want to go on about it to all and everyone...my siblings dont all know the full story. Not yet.

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I took to Ruxolitinib really well. It started to shrink my spleen and liver quite quickly. It also helped ease the symptoms of itching. I started on a very low dose and gradually worked up to 30 mg daily. It does have to be adjusted occasionally when blood level readings fluctuate. I can say honestly that Ruxolitinib has managed my myelofibrosis really well. It is 5 years from my diagnosis and I am quite good. I do have really bad days of fatigue etc but I try to keep positive. You need to be positive as much as possible for you & your family. It is a very complicated cancer and so many people have never heard of it. They are learning more about it all the time. Hope this helps.

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Hi Swede. I am the same . My two sisters don’t know about my MF even though one of them has ET. If they can’t be bothered to ask me how I am well then it looks like they will never know 😊. We are loving living in Portugal for part if the year. We have a daughter and granddaughter here but we keep an apartment on Tyneside too as we have a daughter and two granddaughters there and travel to see our son and baby granddaughter in Chichester. My life is pretty busy when not relaxing in the sun 😊

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Portugal is nice! as well as other places..and I bet you feel better just because you are there! I do when in Spain anyway. Do you get Rux wia NHS?

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Oh so sorry, try to look on the bright side. Your doctor has referred you for a sct.

Giving you you lots of hope hugs and kisses

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Thankyou. Kind of you!

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Hey Swede...

That is tough news... I can also remember being extremely downcast when I was first diagnosed too...

Hence, I am feeling for you my MPN brother...

For now I suppose just know that you have a tonne of support right here for when ever you might need to talk...

Best see your new specialist, and listen to what options they might be talking about too...

There are many other members who who have also been down the SCT road, and I am sure that they too will also be here when you need them...

Best wishes Swede

Steve

(Sydney)

PS. I too was first started on HU, but life really improved for me personally on Ruxolitinib, hopefully, it may be the same for you too... :-)

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Hi Steve, yes, everyone here have be so supportive. Just one little detail...I do agree that my voice over the years, have become a bit darker but I still have the same gender(female!) Thank you, it gave me a laughter!

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Hey so sorry about that small faux pas... ;-)

Not easy to always realise, and especially so when one is in a hurry of sorts... Really just wanted to try to be supportive when it counts etc...

However, and now that all my excuses are dealt with... ;-)

Very glad to learn that I brought a small smile to your dial too...

Best wishes & stay i n touch...

Steve

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My husband was told his PV is now post PV MF grade 1 .

We went in to panic mode in December when we were told it was making us both ill. He's 46 years old now. Had PV for 6 years.

Went to see the SCT team and they agreed he's nowhere near ready for a transplant and he's opted for ruxolitanib which has brought all his bloods back into line in normal range withing 4 wks.

The consultant said it may take years and years and you may never need a transplant so we will check for donors just incase it progresses to AML.

They've found 9 unrelated 10/10 matches on the anothny Nolan site so we've stopped worrying now.

He's working full time and exhaustion has gone since starting ruxolitanib.

A transplant would be a very last option.

We don't even talk about the transplant now as it was taking over our lives.

People have had MF for over 20 years and there's always better medication coming out.

Take care

Tracey

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Hello Tracy, thank you! That made me feel a bit better! I am very happy that you have this option! Give me some hope really! But hopefully you (he) wont need it!

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Your welcome ,

We are just staying positive as theirs treatments for this I know it won't cure MF . The only cure is transplant if it works it's so scary and a brutal thing to go through. My husband said if he progresses to AML then he will go for transplant this may never happen.

Keep positive

Tracey

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I’m glad you reached out with this hard news. It’s smart. I have no personal experience with this but I wanted you to know that I am thinking about you at this time. I hope you keep using this forum and so keep us in your loop.

Sending warm wishes,

Jo

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Thank you! Yes, I bet I will have ups and downs when I reappear with some stupid question or in need of support.

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Hi Swede. Sorry to hear your news. I'm thinking of you and wishing you well.

Mel x

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Thank you, you are kind!

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Hello Swede - I have no experience of this condition but I do know about depression when hard hitting news seems too hard to bear ........ the comments you have received on this site are awesome and I cannot add much more than to give you strength and encouragement to carry on and live live live! Sending you warm wishes and thoughts sooooo much zen to help you deal with this xxx

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Hi, and thank you for warm words. I agree, everyone is very kind and caring.

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Hi swede, so sorry to hear of your progression, it is so hard when you get clobbered with difficult news to stay positive (it is pretty much rage keeps me rolling along at times)

I can’t help with MF info but there have been some super posts here from those who can give first hand help.

I wish you all the very best + hope you have a good haem team behind you.

Anne-Marie xxx

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Hi Anne Marie, you are right! I was hammered down but I sort of already had it in my thoughts...Thank you for kind words.

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Can't really offer much other than to send you my best wishes and let you know we are thinking of you. Well done for reaching out for support x

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Hi, thank you , it so helps as you all are so kind!

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Aw bless you it must be such a shock you swear curse and stamp your feet bawl your eyes out, Then get ready for the fight, you can beat this hun xx

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Hi, thank you and yes, If every swearword costed 1 pound..I would be poor. If every tear gave me a pound I would be millionaire!

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Sorry to hear that. Thinking about you

J x

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Hello Swede, I too am very sorry to read your news. I was diagnosed with MF at the beginning of 2017 (having had ET for around 10 years) and understand exactly how you are feeling. It is indeed a terrible shock. I am low risk and worry every day about the disease progressing. I am 55 and have been told I would be too old for SCT, but now want to be referred to an MPN specialist in Glasgow (I currently see a general haematologist in Central Scotland) for a second opinion.

The worry and fear will subside, Swede, but not completely disappear.

Best wishes to you.

Paula

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Hi Paula, I had ET for 12 years (well, after diagnose) but did not expect this . I did not think it was different symptoms or so..but it is what it is now so...get the gloves on !

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Hello YOU ALL! I just want to thank you for you support. I was a bit overwhelmed when I open the PC ans noticed all you fantastic answers! THANK YOU! (here is a little tear coming down my face...)

It has all been really hectice the last 2 weeks. My sister died 2 weeks ago and yesterday we spent the day at hospital as my father in law has a serious heartproblem and bladder cancer and suddenly became worse.He is 93...

When people asked "-How are you?"...I did not really have the strenght to answer. Jokeing I say "depends on if you sompare it with 6 June 1972 or 15 October 1998".

I have read a bit...a lot...and realise that I dont think I will be a SCT candidate. The Ruxolitinib as I understand, is not funded so I am not really sure if I can get that and what to expect. You who have tried it, what do you think?

I dont really want to go on about this MF- diagnose, but I guess it is like this when one just get it.

Our future plans now changes drastically. We need to discuss this but I dont allow me to be too embedded in it. I need to do it in smaller portions. AS I have a wonderful husband who really must be up for the Nobel Prize, must be suffering as well. I will try to deal with that as well but he is in a medical profession so he knows quite a lot more than I do about this and that.

So, yesterday when we came home we opened a bottle of red wine (did not think a Bloody Mary was apropriate... :-)) ). On a normal Thursday. We also had a dessert which must be around 20 years since I had last time...a creme caramel that my husband loves!

So, again thank you all my friends! I will be back....

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Just an extra comment - the Ruxo is funded on the NHS - for which I am so grateful. Keep smiling. - SkipperL

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Hmmmm...my doc said I might not be able to get it.Must investigate.thx

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Hi Swede I am on Hydroxy and aspirin.

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I am aswell,atleast for a while ,on Hydrea.

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