Hello everyone, thank you for accepting me to this group. So back in Dec I was diagnosed with ET JAK2+ I had a BMB and yesterday I went for the results. I was told I now have MF and there's evidence of scarring in my marrow. Scan on my spleen has come back OK. They have taken more bloods to do "scoring" to determine what stage MF. I've been silly and googled MF and I've now worked myself up into a right state that I can't get out of. It's breaking my heart looking at my 7yr old daughter and thinking there's a chance I'm not going to see her grow up. I'm 43 and healthyish. I don't really have any questions to ask any of you, I'm just in complete panic mode and wanted to share my story with people who are in the same situation as me. Thank you for reading xx
Just diagnosed MF: Hello everyone, thank you for... - MPN Voice
Just diagnosed MF
Hello Mumfer,
first I want to note, that I'm not in the same situation like your are, but have been diagnosed PV in January this year - so about the same time you got your first diagnosis.
Second, don't do what you did... DO NEVER GOOGLE. The information you get from google regarding MPNs are usually outdated or inaccurate. As you did, I get why you are in PANIC! mode - though you never should panic, like Douglas Adams noted in his hitchhikers guide.
Anyhow... I hope this is some help: I know several people having an MF (Post ET, Post PV...) who have had that for a decade or more. It depends heavily on the mutations, stage etc.
So first things first... it's way too early to panic. From what you tell healthwise you seem to be pretty stable so far, which is a good sign IMHO.
The youngest guy I know, having a MF is in his thirties and he seems to have a very mild form, meaning a very, very, very slow progress - if at all - can be seen.
Of course it can be a bad variant as well, but you are still not running out of options then. There are medications etc. and last but not least you still have the option of a STC - which hopefully is still far away.
To cut a long story short: Yes it scares the hell out of you, BUT you are having a wide range of options still and - IMHO - you have a great chance to see your daughter grow up. Might there be some problems and some forms of implications, definitely yes, but try not to plan your whole live now - something you wouldn't have done without a diagnosis - plan just 5 years ahead. The next 5 years are a piece of cake... you feel fit so what.
It will take some time to adapt, but I'm sure you will.
All the best!
Good you had BMB, results will give you a lot of info, specific gene mutations etc. Try not to worry to much, I know it's hard keep us posted
As mentioned there are people who live with Myelofibrosis for a long time as it can move slowly. Progress can be assessed by your doctors. There are drugs that help manage the symptoms but they don’t cure. The only curative option is a stem cell transplant (SCT) which can be a tough ride but is worth it. Had mine 10 years ago aged 58 in London. There are others here who have had theirs too. It will be an option to investigate with your doctors as not everyone is suitable. Your age and Healthy-ish seems a good start. Happy to help with questions and information when you need to know more.
Chris from Watford
Should have added that you can be hooked up with a buddy via MPNVoice to discuss this from a patients perspective. Chris
Thanks for sharing, guess that may help a great deal.
Praying all goes well for you.
Hello MumferSorry you're feeling so anxious - it is so scary to get an MF diagnosis. Let me be a bit reassuring. I was diagnosed 30 years ago when I was 38 and my children were 8 and 6. I'm now a reasonably fit grandmother (a bit anaemic so I puff going upstairs or up hill). I'm on ruxolitinib but am able to live a normal life. I know everyone's experience is different but it is possible to live a long time with this. Also there are lots of treatment options with drugs and transplant.
That's a great input, thanks for sharing.
Thank you, that is so reassuring to know. Its all so much to deal with. I was only just getting my head around the diagnosis of ET but with that I wasn't overly concerned. Reading up on MF and the prognosis online completely freaked me out, I am trying not to panic too much 😬 I suppose I need to wait and see what level MF I am at,will find that out in 6wks when I go back and see the consultant. Everyone has been so kind on here, my pulse isn't racing as fast x
Bullace You have done extremely well. My original prognosis as an IR2 was 2 to 8 years with a median survival of 5 for my primary Myelofibrosis. So I went the SCT route. . Chris
I was just lucky Chris that it progressed slowly and rux has worked so well so far. However transplant does loom ahead, if I'm suitable, before I get too old.
I follow BMTInfonet, an American site that covers all types of stem cell transplants and have travelled to three of their symposiums. Us MFers make up a very small percentage of attendees. This year covid has pushed it on line and one of the presentations was SCT for older patients. While headlining for MDS and AML (where MF can go) it could be useful for you. I also have a link to a very good presentation on SCT from one of their symposiums a few year ago. PM me with you email address if you would like to see them. Alternatively look them up and you can register to find them. Chris
Would you mind if I also PM you with my email address as the SCT decision is looming for me too. Prof Harrison says that I would be a "good candidate" and next month I am seeing the SCT specialist at Southampton. I'm feeling very scared and uncertain though. Thank you, Jennie
Of course. Happy to share with anyone. It was the Proff that helped me along to SCT as a 'good candidate'!
Some very encouraging replies here. It is very helpful to be able to glean information on your condition and hopefully it will be a great help to you.
Hi Mumfer, I read your post and it really resonated with me. I have a six year old daughter. Hang in there, take it day by day and if you need anything come back here for support. I will be thinking the best for you. It's a great forum with a wealth of knowledge and experience from all it members. Also I truly believe that there are going to be lot of medical advances in the next few years. BX
I totally understand how you are feeling .My husband started off with PV after 4 years he's now got post PV MF.
It absolutely knocked us both off our feet.
I will honestly say once your medication is sorted out you can live a normal healthy life. My husband has been on ruxolitanib now for 2.5 years all his bloods are in normal range and his MF doesn't get in his way of life at all.
You read all kinds on Google , but I can assure you you have come to the right place for support as people on here know exactly what life is like living with blood cancers.
My husband has seen the stem cell transplant team he's had all the testing done for a donor he has 9 matches on the register if ever the time comes if he needs a transplant.
His consultant said this may never happen as long as the medication works and the professional researches are constantly working hard and finding new medication. Hopefully one day they may find a cure.
Try not to worry too much I know it's easier said than done take no notice of Google and life expectancy there's people on here had blood cancers for over 50 years and back then there was no treatments .
Take care
Tracey
I forgot to mention my husband was 41 when he was diagnosed he's now 49 .X
Thank you Tracey, I really am starting to feel more at ease with my diagnosis. Being told I had MF and then stupidly getting fixated on Google I completely freaked out. Reading I could only have a maximum of 10 more years really upset me. I've now stopped looking on Google and watching specialist talk at seminars instead, at least I know what they are saying is accurate. Everyone's advice and support on here has given me so much more confidence in dealing with this illness
I know exactly what you mean we went through so much stress I was obsessed googling . My husband in his 8th year now all his bloods are normal range . We try not to think about what if this medication stops working.
He's doing great works full time we go away enjoy our lives so in all nothing has changed.
He had 3mthly blood check ups and now twice a year has his consultation with his hematologist it's working quite well for him.
There's a lot more medication out now than ever before onwards and upwards with all the new trials and studies.
You take care and enjoy your family .
X
Hi there Mumfer- I'm sorry for the jolting reaction the Google search has done. I was just diagnosed MF this week also at age 41 and did the same thing - I also Googled. Heart sank. My MPN specialist has reassured me that the meds work and to expect a pretty normal life expectancy. I have a 1 year old and 6 year old. I understand your worries. You are not alone. ❤️ Many of the medications are new and they can do combination meds also to tweek if needed. I've been focusing on the doctors words and experience over the information on internet. So much is changing in the field and many of the meds have only been available in the last 2 years leaving much of the data on Google a bit outdated.
What is your course of treatment ahead? I'm starting pegasys soon - hoping no insurance issues (living in the US).
Hi, thank you so much for your very positive reply. Sounds like your specialist was much more knowledgeable than the one I have seen. I was told the news and given a booklet to read, so really I have had to do my own research. I am going to request to be referred to a MPN specialist. I will be starting hydroxycarbamide in a few weeks once they have graded me to determine which level I am at. Consultant thinks I'm somewhere between early and intermediate 1.
Your doctor sounds like the first doctor (hematologist) I had - She told me my results (ET JAK2+ in 2019) over the phone and told me to go to WebMD for more information. I have since found and have asked to be referred to an MNP specialist. My new doctor insisted on a bone marrow biopsy, and then my diagnosis was changed to MF. So my treatment now changed completely-Thank goodness she did a BMB or I would just be still in the 'watchful waiting' while the bone marrow scarring continues to accumulate. If you'd like, I could send you some information (mostly scientific journal articles) that I've been reading about treatments and results for MF that more closely reflect what my doctor has been telling me. I would also recommend scouring the internet to find the best MNP specialist in your area, and request to be referred to them specifically. Feel free to private message me anytime if you want to discuss more specifics. We are close in age and our diagnosis are very similar.
Hi, Mumfer,I completely understand your feelings of stress and anxiety. I was diagnosed with ET jak. 2 in 2008 at age 52. In 2019, I found an Mpn specialist because I felt I was getting worse, but my original hematologist kept putting me off. I had my second BMB with my new doctor and I was diagnosed with post Et Mf, intermediate 1. My emotions were like a roller coaster for several months afterwards. But now I realize that there is ongoing research and new treatments out there, and I’m much more hopeful for my future. You’re young enough to think about an SCT when the time is right. You will definitely see your child grow up.
I wish you all the best.
Hi Mumfer,
First thing I would like to say is 'Don't Panic'! You will make yourself ill unnecessariy. I remember getting my ET diagnosis in October 2019, sitting there alone and smiling at the consultant whilst I made notes. At that point it just words going in through one ear and coming out of the other. It wasn't until I had my BMB that I realised just how scary it all was. I had a million questions which I eventually prioritised and asked the haematologist each time I saw them until lockdown when everything turned to telephone consultations. I continue to ask the questions when I have them. I write them in my electronic diary in my next appointment so I don't forget.
Explain to your family first and foremost so they can also help when you need to talk to your 7year old. Remember children are sometimes more resilient and understand a lot more than we think (ex teacher). If you do have to Google , do so in small chunks. I would be the last person to say 'dont Google', because I Google everything but over time, I have learned not to suffer from information overload by limiting myself to reputable sites only or limiting how much time I spend online.
Also remember MPNs have a long history and many people have had their MPN for more than 10/ 20years. I was told when I was diagnosed that it is a 'manageable disease'. This is the main knowledge that helps keep me centred. I hope you get over your worry/panic. Good that you are reaching out on this forum. Hopefully all the comments you read will help put your mind at ease.
Have a cuddle either your 7year old and do something to make you both smile over the weekend 😊
Take care!
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