So I was at the Hemo/onco last week. I kind of jokingly asked him, "So do you think I will live another 10 years?", and he said "Maybe". Now before you get mad at him, he did, of course, quantify that no one knows, and no one can predict the course of the disease exactly yada yada BUT, he thinks my PV has progressed to myelofibrosis. He wants to do another bmb because he fears I might have other more serious mutations. He said by age 70 it is usually too late for a SCT so perhaps we should start thinking about that four years from now. Naturally, I left completely destroyed. I will be 61 next week, with no hx of thrombosis, and on Jakafi after five years on peg/besremi. My numbers are well controlled now, but my cbc shows all the weird blasts, large cells, high LDH, etc. I suppose I don't have a question, but just wanted to vent. It is a very off-putting thing to sit across from someone in a white coat telling you that you may have 10 years left 15 if you are lucky. Should I be freaking? Thanks for "listening".
10 years to live?: So I was at the Hemo/onco last... - MPN Voice
10 years to live?
I was told the same14 yrs ago ,I was 70 at the time ,I am 84 MF now started with PV.Worry not ,keep as fit as you can,rest when tired ,keep out of hot sun,eat sensibly,drink lots of water.Good Luck you will be fine.
This is incredibly encouraging, Inca.
I’ve spent the summer working on not worrying so much. I did a decent job of it, but a few weeks ago, my anxiety started ramping up. Reading your words brought me such a sense of calm.
Thank you.
I do have my down days Lena & I get tired like everyone else,I have a helpful hubby& dogs that keep me going .I am proff sculptor & artist so I work when I can.Really necessary to have a reason to live.Got a foal due next spring ,I am determined to keep going to see him/her!!!!Keep going keep strong 🥰
Thank you for that! It’s so wonderful to read these kind of stories.
I just answered Lena….I wish you much luck & try not to get depressed,yes I do sometimes so,play with my great G S Ds their devotion to me & hubby really helps us both. esp when we feel our age 😱😊
Hi
Sorry you’ve had this news. Your post seems very similar to the news I got last week - see my post ‘shocked and stunned’ - I had to vent just like you!
I’ve calmed down a little now with the help of good people on this forum. From my experience of the last week, take a step back and try and rationalise the situation using the information/advice you’ll no doubt be provided with.
Very best wishes
Pete
Yes I read it, thank you so much. It is a strange journey we are on. I guess I also learned my lesson about asking questions you may not want the answer to 🤐😬
So sorry to hear this. Progression is certainly my biggest fear - and I suspect the biggest fear for most of us. Take one day at a time. Hopefully the wisdom of others on this forum will also provide comfort. Hugs.
Thank you for the support!
Venting is a good thing Glad that you reached out. This is not something to sit alone with.
It is understandable that you would be worried given the current situation. Please know that you still have options for successful treatment, including SCT if that is the best choice. In addition, our treatment options are continuing to improve.
I would note that there is a difference between statistical probability and what will actually happen to you. According to my profile and the MPN risk calculator, I have about another 5 years to go before I reach my "expiration date." I do not worry about that at all. There is no MPN timer ticking away in my body. I am doing everything I can to manage the PV and maintain a high quality of life. These same things will likely extend the length of my life. I stay focussed on what matters most to me and let go of the rest. I do my best to follow the core tenants of the Serenity Prayer.
Serenity to accept the things I cannot change.
Courage to change the things I can.
Wisdom to know the difference.
Wishing you all three - Serenity, Courage and Wisdom.
That’s why I’m going ahead with my SCT. I’m 68 and 2 transplant specialists told me my window of opportunity is closing. The latest one said I may have “1,2,or 3 years but definitely not 10.” That really helped me make my decision.
Amazing. Will you please let us all know how you get on?? I would love to hear about your journey.
I too was told ten years. Must be the magic number that was 6 yrs ago but I really don’t think about it
I’ve spoken to people with MF who were diagnosed 15 years ago🤗
Agree with cja1956. Bear in mind the estimated prognosis is usually quoted as a median expectancy, ie 50% will live equal to or longer than the 10 years. When I was trying to decide about a sct, I was given different expectancies and there are several you can look at on the web, e.g DIPSS but a lot depends on your particular blood/marrow features. This is something you need to discuss with your specialist. Re SCT I had mine at 70 but didn't have comorbidities like heart disease, diabetes etc. A further thing you need to ask is what your quality of life is likely to be and how effective various medications are at slowing progress
Interesting to hear that you had your SCT at 70. My consultant said the cut-off was definitely 60! It must be assessed on a case by case basis?
Yes you're right it's more about ones general overall fitness to withstand the rigors of a SCT. So you undergo a range of tests to ensure you're a suitable candidate beforehand.I had mine at Manchester Royal UK and was told by my consultant about 7 years ago their oldest successful Transplantee at the time was 76.
Chris
Thanks Chris. That’s useful to know. Just out of interest, did you have any input from the Christie? I’m in the north west so would probably be an obvious choice for a referral to the MPN specialist there.
Thanks
Pete
No Pete . . There is a wealth of expertise at MRI with a dedicated isolation unit. The only time one might be referred to The Christie or there might be crossover is if for instance a more experimental or newly developed treatment like CAR-T therapy might be required. Or it's one of the rarer blood cancers. Good Luck with everything.
Thanks Chris, that’s clearer. There’s a lot to learn about all the options available!
I hope you’re keeping well.
Best wishes
That is so great to hear. I how you are doing well. And yes, quality of life is everything right?
Gosh, brutal is a word I don't often use. But.... Listen to the all the above sound advice and actions that our MPN friend's give. . I love Hunter's prayer and take this to my heart. None of us know our day when we leave this world. My husband tells me, "our heart's have only so many beats". Ummm. Maybe something to consider. Please try and focus on the positive and life now. Deal with it as best you can. I understand it is certainly not easy. All the very best. X
As if doctors really know anything
We the MPN know way more then any doctor
This has been tested by me personally many times
Everyone medical professional just googles what it is
I would change this “professional “ for a more capable and empathetic medical professional
one fact I can add to the discussion is when I was at the doctors conference is Oct last year in New York they had one of the most respected transplant docs give a presentation. He said as of 2023 they were transplanting up to age 80 and that age limit is increasing as techniques improve, I’m not sure if that age limit applies in UK yet.
Second fact is there are patients with MF very stable at 20 years with MF, it can vary of course depending possibly on mutations and general health.
Importantly, there are many new drugs being trialled in particular for MF, there is much optimism amongst expert docs that they might come up with something even better than current options.
Your doc has to say “maybe” , also if you asked a doc to predict if people our age without MPN if we they be around in ten years I suspect that would also get a maybe.
Most people with a MPN eventually die from something else not the MPN.
I hope that helps a bit, I also think the replies others have posted already are very useful.
Yes, I am in the US. It is so true of course that we are all different and even though we may have the same disease, our reactions and journeys with it are completely different. I hope and pray that within the next five years, there are more drugs that we can all choose from before going the transplant route.
Pls do not worry too much, but enjoy your daily.
Let it flow and just keep your health as best as you could.
Medicines and treatments advances very fast and I believe there is a cure one day later.
Cheers
It is worth remembering that for most cancers, 10 year survival is the benchmark of successful treatment and remission. 10 years has significance for an oncologist, it means his/her treatment programme has been successful. So if he says to a patient "No reason you shouldn't survive 10 years" he is giving Good News.
MPNs are different, but if the doctor is surprised by a question, they may answer in the way they do for most of their patients and not immediately think this is an MPN patient in front of them, and we get a shock.
So true. Thanks for that perspective.
I feel for you, sadly I understand thepath you’re on. I’ll be 70 next January. Diagnosed with ET 17 yrs ago and about 4-5 yrs ago was found to be morphing into PV. My medical care at a top flight university with a dedicated blood cancer center has been excellent. But inevitably this disease will take my life; I have known it for some time and after a period of bitterness and anger and “this can’t be happening” moments have basically made peace with it. Its not going away. Not happy about it as my daily life has slowly been eroded (racing triathlons for 20 yrs, lifetime surfer, runner and cyclist, active gardener etc). Today 20-30mins of physical activity leaves me rather spent and in need of a sit-down. My wife just smiles and continues digging in the garden as I watch for a few minutes before rising and start weeding again. Rinse snd repeat. It’s what I have and I’m happy for the moments of joy and peace I have left and will do my best to savor them.
Dear solebury. How do you know for certain.? As I spoke before, nobody knows how many beats are left in our heart. I have PV. And have had this for the last 2/3 years. I cannot deny that some/most days I feel "shitty". I try so hard to move on. Not cry, nor to moan, enjoy your Peace and joy, I wish you well. X
Hi,
Try not to worry too much. Nobody really knows for sure.
I was recently in a Dr's office discussing PV. Dr said don't go on the internet.
I told the Doc I was concerned about a certain symptom.
He said wait a minute while I get my phone.
He comes back with his phone and looks it up on the internet.
Go figure.
I took a friend to the doctor, and the doc had a coffee mug that said, "Don't confuse your Google search with my medical degree" LOL
It's hysterical.
But we need them , we can't write prescriptions for meds.
ChatGPT seems pretty good too. AI and acceleration of computing power will hopefully increase speed of new discoveries.
My dr said the same thing to me when I was diagnosed with ET. He said the info would scare me to death and that he had told me everything I needed to know about it.
Thank you. It is indeed a reminder for all of us to be present and happy for those moments of joy. 
when I was 57 years old I was told I had 5 to 10 years to live. I’m 81 now. The doctors don’t know for sure so don’t worry about it.
You give us hope😊
Hi Miriammusic. My professor told me 19 years ago that I would have 10 - 15 years. I’m past my sell by date and still going strong. The fatigue is hideous but I’m walking my dogs and do yoga when I have the energy. I drink loads of water and eat healthily and rest when I need too. I hope this helps a little and wish you many more healthy years. Mel x
Thank you!! I think all these stories help all of us
Morning I just want to say thank you for venting in a place where many understand . This is just where many of us are and feeling the ups and downs. My parents died when I was young so I never thought it the norm to live 3 score years and 10 but you get used to the possibility especially after each decade
.as you hear the stories of others here you take a little more hope so carry on with that and keep talking all these words make us realise we are not alone ….
Which you can feel when others keep asking if you are cured or why you look so well when you supposedly have something wrong with you . L
Unfortunately this shows how a large percentage of the medical profession lacks the simple skill of good communication. As an actor I work a lot as a ‘role-player’ for the NHS for exams and teaching. It’s remarkable how bad some are at personal interaction. I’m sure this has been very upsetting for you but I’m sure you will use the incident to fire you to be around 30 years from now and remind the doctor what they said!
Thanks to EVERYONE for making me feel heard and most importantly, like I’m not alone. I want to stress again how much I love my doctor. He’s been on this journey with me for 14 years. He gave me his cell number early on to call him anytime I need him and he cares about me. I think I just probably put him in a tough spot by asking for a prognosis. I have never done that before. As some of you have said, I also just kind of explore the new treatments and take the medication and carry on. I don’t know what made me ask that day. And as I mentioned, he did stress that no one knows for sure etc. I think it was more that I got a glimpse of a horizon that I haven’t ever been willing to look at. But after hearing from so many of you that have beat the odds, I feel encouraged. So thank you so much!! We are lucky to have each other. This pic is the sun coming up about 30 min ago. Thought it’d be a good metaphor 😊
Wow, what a horrid appointment. It seems like your doctor could've handled this conversation more empathetically.
Something to keep in mind is that science is learning more and more about MPNs. Treatments are getting better, specialists getting more knowledgeable. My understanding is that there are better treatments for MF now than there were in the past. So you may well outlive the 10 years your doctor said, who (as others have already pointed out) doesn't know when you'll die.
I'm sorry you're grappling with this. This is so difficult, and you deserve support so I'm glad you decided to vent.
Wishing you the best ❤️
When a bone marrow biopsy showed that my PV had progressed to MF last Christmas, I was told "18 months to 3 years, but we aim to keep you alive much longer "
Hi, I have ET which has a similar end of life estimate, but that’s what to take from this, it’s an estimate, no one really knows, we are all individuals. Live life now, today, every day, take joy in the little things in life that we all take for granted, be good to yourself. I know from personal experience it’s not the easiest thing to achieve but it’s all we can do with what we’ve got going on. Hope that makes sense to you.
Just saw MPN Specialist | ET+CALR 
Phone appointment 
Besremi - After Two Years
High platelet count? Anagrelide? Hydroxyurea?
Not sure how I feel
