I'm really really struggling with my new diagnosis of mf and the watch and wait approach,I am continually tired with no energy, what do others do to overcome this. Thank you.
myelofibrosis : I'm really really struggling with... - MPN Voice
myelofibrosis
Written by
glyndale
To view profiles and participate in discussions please or .
45 Replies
•
I also have MF on Watch and wait , blood test to see my red cells HB , if below 90 then have blood transfusion , I try to rest in the afternoon for an hour , am still working part time , we all are different in are journey , its how you manage it !have you had a blood test to see if your HB is very low . Best wishes Margaret
Thanks for replying my hb is 10 which it has been for a few months
I really sympathise. I struggled hugely when I was first diagnosed; I lived in a constant state of anxiety and it was unbearable. Do you have an MPN specialist? I think you really need to talk this through with someone and get either an explanation of why you are on watch and wait or perhaps get a proper structured treatment plan.
Good luck, Jennie
Thanks for replying no I have no specalist just haematology consultant
You really need to ask your haematologist to refer you. My haematologist got me a telephone consultation with Prof Harrison at Guy's so you don't need to live close by. MF is a big step from ET or PV and it really needs specialist input, especially as you are suffering with fatigue. Do you know what grade of fibrosis you have?
no I'm not sure think she said low intermediate, but your right I need to ask to be referred thank you.
Otterfield has it right about consulting with a MPN Specialist about your care plan, particularly since you are symptomatic. Here is a list.
yes your right,thank you for the list.
Hello there,
It’s an overwhelming diagnosis to get your head around.
I know and understand what it is like to feel in no man’s land…
I would get a refferral to see prof Clare Harrison from St Guys in London.
She is the the top MPN dr in the uk.
Her research and clinical trials are so valuable to our cause.
I’m in Australia and was lucky enough to have De David Ross in my state.
Having a specialist makes all the difference.
Thank you ,yes I need to see a specalist.
Try and not worry. My husband was DX just over 5 years and at that time given 3-5 years. He now 68 years old. He is very tried, blood transfusion dependant. He was hospitalised 2 years ago with pneumonia for 19days.. He's just gone down with COVID and he's still had all his jabs. He's got a super Consultant did put him forward for 2 trials. One was too far to travel, second one discovered liver wad damaged because of too much iron from transfusion. He is a fighter and keeps going, as he said we have granddaughter he wants to see grow up.You need to have a good consultant behind you who knows what they are doing and also who will listen to your hopes and fears. Good luck in your journey xx
I got my mf diagnosis about 2 years ago and went through similar turmoil. I did have an mpn specialist. For a short time I was on watch and wait but when my platelets dropped I was then eligible for Ruxolitinib under NICE guidelines. When they dropped again I was transferred to fedratinib. I believe another drug is on the horizon as well.Meanwhile the consultant referred me for a stem cell transplant which I hope to have next month when I'll be 70 but am in generally good health otherwise. Hunter sent you a list of mpn specialists so if Clare Harrison is too busy I'm sure one of them will be good. In the meantime, when you next speak to your haematologist you could perhaps ask why a specific mf drug is not suitable and what they think about a sct
yes I will ask my consultant, thank you and best wishes.
You still have other option called Momelotinib.Now in study phase 3
Part 2 of slide
My husband was diagnosed 10 years ago with PV he started off with venesections every week then monthly onto 3 monthly this lasted 3 years then he was put on hydroxy after 3 years he was so exhausted struggled with daily activities he ended up iron deficient.
He then had a BMB which revealed primary MF so he had to see the bone marrow transplant team who said he was too healthy for a transplant they done all the blood tests and it came back he had 9 unrelated donors on the register which was amazing.
Anyhow they said he could try ruxolitnib which he's now been on for three years and it's totally changed his life he's got more energy and no fatigue he works full time in engineering.
He suffers anxiety I think it's all to do with the worry of having MF in the background.
So since initial diagnosis it's been 10 years now we still do everything go on holiday , nights out .
Mind you he's found he can only drink a small amount of alcohol it just doesn't agree with him the next day he ends up with terrible anxiety.
So he's now changed to alcohol free and he's managing loads better.
There's lots of medication out there to help you .
When he was first diagnosed I was on Google morning and night we were so scared of what was to come. I joined this group and when you speak to people who have MPNs it really does put your mind at rest .
So his medication is a daily baby aspirin, lansoperzole 20mg rux morning and 20mg on a night . All his blood have been in normal range for 2.5 years now.
He has quarterly blood tests and a telephone appointment every 6 MTHS all seems to be working well.
Good luck hope you get sorted out.
Tracey
I know its the standard of care as a SCT is not an easy or trivial procedure but I often wonder if one is dealing with a MF diagnosis would it not be better to try for a SCT when very healthy? I know perhaps it would not be necessary and we would carry on without one...just a question as I have little knowledge in this area and have often wondered.....
You're right about considering one's condition before SCT. A very healthy person is not likely to be a candidate, but current thinking is to do it while the MF is still stable and responding to Rux etc, rather than wait till/if Rux has stopped working. As always details will matter in Dr-patient decisions.
It's largely to do with the extent of the fibrosis. Mine was Grade 3 so an SCT was suggested even though, thanks to Ruxolitinib, I felt fit and well. I was advised not to wait until I was actually more ill. They like you to be as fit as possible going into it.
sct is dangerous my consultant said because I was so young he didn’t want take time away from me if it goes wrong so he wanted to try rux which was great for 5 years but I failed and fedratinib didn’t work it made me very ill and I got sepsis aswell as septic arthritis so sct will begin in new year I don’t know if this is why for everyone but I expect so iam with st guys they are really good
Hi. I was diagnosed 8 years ago with primary MF at age 49 years. I manage my tiredness by listening to my body. I do things when I feel I have energy but try to stop before I get too tired. Don't push yourself as this will make things worse. I am on Ruxolitinib and various other medications, including morphine for pain. When the medications are at the right levels you will find you can manage things much better. Talk about how you feel and don't put yourself under too much pressure if you feel unable to do things. You will have good and bad days. Do something nice on the days you feel able. It really does help and gives you nice memories too. You can learn to live with MF. Best wishes for the future.
I don’t have MF, only ET. I have turned my life around and made fatigue a thing of the past. I started learning intensively about my illness. I found good and affordable alternative doctors to help me. I found a haematologist who would answer my questions, and who would listen, not just dictate pills.
I got rid of all chemicals, GMOs, Grains, milk products, chemical cosmetics and soaps out of my life. I checked vitamin, mineral, et cetera deficiencies. Then Infixed those deficiencies with supplements. I got rid of all medications and substituted them with natural alternatives, except for anagrelide. Try only to buy organic food! I fixed up my gut with good gut bacteria. Take 10,00 IUs of vit D daily, got rid of all amalgams. Within six months, almost all my ailments were gone. No more allergies, body, odour, mouth, odour, depression, weakness, incontinence, bloating, and 25 kg melted away.
getting rid of anything that causes any amount of inflammation is the key to success our bodies are overburdened., due to our lifestyle. I started deep, breathing exercises and taking the stairs where ever I could. Slowly, I began to build muscle again. My hypothyroidism Hashimoto is down 65% I am basically fixing my thyroid, which I was told cannot be fixed which is a lie!! I went from 200 µg T4 daily to just 75 in four years Bio identical hormone is the trick.
I also take 100 mg coq 10 every morning and 2000 mg of acetyl l-carnitine daily. I also take 1 tablespoon of fish oil in the morning and night. I also do liver cleansing. These to give me a lot of energy. No more alcohol, no more sugar, no more carbs, accept a bit of rice. I also got rid of negative people from my life! I no longer watch the news! I pray.
it took me a few months to get organized and slowly move forward with all these new changes to my life. It has been well worth it.
you don’t have to do everything that I have done, but pick a few things that are under your control and doable, and do them! You will definitely start to feel better in a few weeks.
And yes, don’t wait, go see a new doctor who will inform you well and give you hope. There is nothing worse than waiting and not knowing. That makes most people sicker.
hope to have helped! 🙂😉
Anag
Hi I’ve had an MF diagnosis since 2016, which explained the otherwise inexplicable levels of fatigue I was suffering. I was then an active 67 yr old. Ruxolitinb helped a lot , but caused anaemia ( and skin cancers - so do watch sun exposed skin for lesions if you take rux). If my hgb drops much below 12, the lower limit of normal, I feel awful - tired and twitchy and BP too low). Its s question of balancing the risk of iron overload from too many transfusions against the fatigue and misery of anaemia. The balance is different for each of us. As I live on my own, I need my energy now. So I can usually have a transfusion if my hgb goes below 11. Lasts abt 6 weeks.
I agree with everyone that a referral to an MPN specialist is a good idea- but easier said than done in the UK at the moment.
One of the new drugs thats on the horizon may help with the anaemia that MF causes and the rux makes worse. Can’t recall which- Hunter will know! All the best
Rachel
yes my fatigue is terrible, thank you for your reply.
I know how you feel. I was diagnosed with post Et Mf intermediate 1 in 2019. I was on an emotional roller coaster for months. At the time, my hemoglobin was 8.7 and my fatigue was overwhelming. My doctor put me on EPO injections and changed my medication. After a while, my numbers stabilized and they were pretty good for a couple of years but my hemoglobin started dropping again last summer and I can barely function. I’m starting injections again next week.
I agree with the others that you need to find an mpn specialist. I wish you all the best.
Hi glyndale, as others have suggested, I think you need to insist on seeing an MPN/MF specialist and be very open about your symptoms. When I was first diagnosed this summer, the first couple of months were very hard emotionally but while the MF is always in the back of my mind, my spirits have improved. I’m also on watch and wait and while it can be frustrating, relatively speaking there can be positives as well. Do you know which driver mutation you have? I’m told that some mutations have slower disease progression than others. There are some very interesting drugs in development so there may be some good options available in addition to the existing medications.
In addition to seeing the MPN specialist and outlining your symptoms, I’ve found meditation can be helpful in the mornings and avoiding caffeine in the afternoon helps me get a better rest.
Take care!
no I don't know what mutations i have ,just am slightly anaemia, and slightly enlarged spleen.
yes I’m told that the mutation testing is important from a prognosis perspective. It probably makes sense to ask your hematologist about this.
Hi,
Sorry to hear you are struggling so much. I was diagnosed with ET in 2009, this has now progressed to MF, which I was really struggling with too. I was eligible to go on Ruxolitinib which I started 3 months ago, no real change yet. I was getting really tired & frustrated that I couldn’t do what I wanted to do or felt I should be able to do. I am retired & I now have a rest in the afternoon which does help, You do need to listen to you body.
I have now been put forward for a stem cell transplant, which also quite scary.
Sending best wishes to you & hopefully you’ll find a good MPN specialist who will listen to your concerns.
Shirley
Hi. I have a few observations about your situation, as a fellow MF patient in the UK.
1. Have you had a BMB and a myeloid panel blood test. The blood test should identify all of the genetic mutations and the BMB will identify the levels of fibrosis scarring in the marrow. These will help to identify the level of ‘risk’.
2. When you have a consultation with your haematologist, ask what level of experience and expertise they have dealing with myelofibrosis and you can then decide if you are happy to have them manage your treatment. The list of specialists is a good place to start if you decide to ask for a referral elsewhere, but as I found with my consultant, Nat all specialists are on the list.
3. Also when you see your haematologist, make sure you are honest about the level of impact your symptoms are having on your life.
Don’t be tempted to ‘put on a brave face’ when talking about your symptoms. Really think about the level of impact they’re having on you compared to how you were when you were fit and well. The symptoms are scored out of 10 and the overall symptom score does contribute to your overall risk score. ( I’m not endorsing making things sound worse than they are, but I know it’s common that people downplay how bad their symptoms are, stuff upper lip syndrome)
In the UK, treatment options are triggered by the risk score. At intermediate 1 the treatment plan in the UK is often watch and wait. Ruxolitinib is not usually available until you hit intermediate 2 level (it’s a uk NHS/NICE funding issue) and generally SCT doesn’t happen until ruxolitinib starts to become less effective and your risk is increasing.
These are just my observations an I hope it helps. Good luck. Garry
Thank you .
Interesting note on "SCT doesn’t happen until ruxolitinib starts to become less effective". As noted in above, the latest thinking is to consider SCT while Rux is still working stably. This is likely evolving as SCT matures and has higher success rates.
But NHS probably would not make this easy.
My Ruxolitinib was working brilliantly and I was advised (by the team at Guy's) that that was the ideal time to get on with the SCT. That made it quite hard to face as I was feeling really fit and well before subjecting myself to the horrors of chemotherapy.
Great way to put it from a real patient, as you also noted above. And evidence that Guys is tops and NHS is there for you. You're right that fixing something that's not obviously broken can seen anti intuitive to patients and Drs.
Hi Glyndale
I’ve MF for a couple of years now
I can usually tell when my HB is slow because of the tiredness have had a few blood transfusions which help. The lowest my HB had been is about 72
I think it’s important that you just try and power through the tiredness hard as that is
Hello, I’m sorry that you’re struggling with your diagnosis, as most of us do initially. As others have suggested, seeing an MPN specialist is very important. I don’t know where you live, but I go to the Churchill in Oxford, where they have a world class myeloid team. Good luck 🤞
Not what you're looking for?
You may also like...
Myelofibrosis
while.
My husband has Myloefibrosis his energy level is really bad - he has lots of pain in his...
Established Diagnosis of Myelofibrosis
after months of not really knowing, my beautiful wife Joyce has a confirmed diagnosis. Her BMB...
Life beyond Myelofibrosis
blood counts are really low but i feel very good and am walking, active and don't feel tired. I've...
Myelofibrosis and bone pain
not good for you. Welcome comments on What has worked for others.
I am fit in all other aspects...
Recently diagnosed with Primary Myelofibrosis
playing golf two or three times a week.
I never really recovered from Covid although tested...
Myelofibrosis and fedratinib
myelofibrosis and interferon
