Maybe myelofibrosis: Hello, all, So yesterday I I... - MPN Voice

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Maybe myelofibrosis

Hello, all,

So yesterday I I went to a new doctor who happens to be an mpn specialist. As some of you know, I have had ET for 11 years and have never gotten a second opinion. After giving my history and my records to the new doctor, she said I most likely have progressed to Myelofibrosis. She prescribed extensive lab work and another bmb. I’m trying very hard to be strong and not fall apart. I’m only 63 and her prognosis was not very promising. I’m going for my lab work this morning and my bmb probably next week. I keep hoping that maybe she was wrong.

Thanks to all of you for your support. I’m so glad I found this site as many of you gave me the courage to seek a second opinion.

Cindy

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Hi there Cindy, I am in the same position. Got my new diagnosis in spring and it is hard. I am also the same age as you are. I have also been to appointment with SCT doctors. Well, I was referred to one and then I asked for a second oppinion and met this second doctor.

When I had ET I did not really want to read a lot about MFas I just became depressed and sad. I now must deal with it but that is the way it is. As John Denver sang: Some days are diamond, some days are stone."

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It is really scary. I won’t know anything for sure for a couple of weeks but she sounded pretty positive that I have it. She already discussed the SCT at my first appointment yesterday.

Thanks for your support.

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Actually, I was sent to 2 specialist SCT doctors by my normal ET/MF doctor. I think that is quite good as they do it every day and therefor are more updated et cetera.

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Well, I wish you the best in your treatment.

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Mmmm....I won't having SCT yet as I am too well...strangely.But I know why.

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Well, at least you have information now so if and when the time comes, you can make an informed decision. Stay well.

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Are you going to have a stem cell transplant? Either way I wish you all the best

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Sorry but what is SCT?

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Stem Cell Transplant ....

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Oh Cindy,

I’m so sorry to hear this. It must be a very worrying time for you. It’s hard to be strong at times like this. This is what we all dread. The not knowing and waiting for results creates further anxiety too.

Judging by the extensive lab tests etc, you have clearly made the right decision in seeing an MPN Specialist. I think we should all have access to one. I do hope you haven’t progressed to MF. However, if this is the case, the MPN Specialist will have the most relevant up to date knowledge for your individual treatment.

Please keep us updated.

Mary x

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Thank you, Mary.

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Yes,but also don't be shy of asking for a second opinion if you want one.That made a big difference to me. But also,learn to NOT stress about it.

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Hey Cindy... :-)

Sorry to learn that you might have (?) progressed to MF...

However, if and when you learn more, and even if that transition does prove to be correct... There are many of us here who have been living well w/ MF for some time now.

Hence, please do not feel lost or alone, or even worse w/out hope...

I might not have mentioned this to you previously, however, since my diagnosis to MF three years ago in May, I have change and greatly improved both my diet and exercise regime, and I am now very seriously intending to cycle around Australia in order to turn my negative into a positive, (& to raise much needed funding into MPN research in Australia where there is virtually none currently taking place).

Hence, so do a Taylor Swift, "Shake it off!" and start looking at ways to improve your own Quality of Life (QoL) Cindy...

By extending our own general health, we may extend our longevity. Many people do... :-)

Best wishes Cindy. Please keep us all informed as to your results as they become known to you, and remember... we are all here sharing this journey with you ...

Steve

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Thanks, Steve. You really amaze me. Your positivity definitely lifts my spirits and I will try to take what you said to heart.

Best wishes on your journey, as well.

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I too am Cindy and also had ET for 14 years I was recently diagnosed with MF and will be seeing the specialist on Monday. (Also were the same age) From my understanding there are some options they try first before an SCT is ordered. You have some time to decide your own fate, and you have options to try first. We have so many similarities, I just had to tell you, you are not alone and we will go through this together. ((((huggs)))) Bring it on together we can do this. CJS

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How old are you? I also have ET, 36 years and i observe that many people with ET progress to MF than somw with PV

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Hi, Cindy. It is strange calling you that since we have the same name. Thanks so much for your support and hugs which I send back to you. I just scheduled my bmb for next week, so I’ll know more then. Take care and keep me updated on your progress. 💐

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Hi Cja

Let's be honest it's not great, but trust me it's not that bad. I was diagnosed with MF at 57. I'm now 61 and it hasn't progressed that much. It can be very slow so don't panic or let yourself get down. This MF develops differently in everyone and so don't get caught up in the worst scenario. A positive state of mind makes all the difference to you and all those around you. As my Hemo says, if you want yo do something do it now otherwise don't panic, keep calm.

In NZ around 50% of people don't make it to retirement at 65yrs. I am going to make it or go down enjoying myself and fighting and recommend you do the same. 😁

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Why 50% don't make it till retirement?You mean people who have MF,or generally?

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No just the population in general. From all those born alive only about 50% make it retirement age. Startling isn't it!

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Horrendous. Does that mean that the health system is not good?

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Like everywhere in the world funding is a problem and NZ can't afford all the "top end" drugs which are available so people die prematurely and their lives and quality of life would be much improved if the drugs were available. I think if you looked at the same stats for say the UK you might find the numbers are the same. The current NZ govt has decided that they would rather allocate funds to other things than up the vote for Pharmac who is NZs govt drug buying agency. One of the ministers has been given $3 billon over 3 years and is busy using it as a vote buying exercise and by his own admission is a "retail politian". Like most political systems there is a certain amount of making sure I keep my job next election so money gets spent on things other than what some or even possibly the majority would consider more important. The Nature of Politics. Compared to the US we are however streets ahead where if you don't have serious money it's all pretty much over.

Regards

Guy

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I’m totally shocked. I just assumed living standards of the sick and elderly were equal to us- uk. How wrong I was. Thank you for your in-depth reply.

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Yes, good advice. I am trying to not think about it until after my bone marrow biopsy next week.

Thanks for your advice.

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Hi Cindy. Just wanted to send you e hugs and let you know that I'm thinking of you. Mel x

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That’s so sweet. Thank you.

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Hi Cindy,

I'm sorry to hear your news. It sounds like you are in good hands now. And you know we are all here anytime you need to talk.

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I wish you the best and stay positive.

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I’m still not coping and all I have is ET. I do hope you find a suitable treatment.

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Thanks.

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Glad to hear that you sought out a second opinion from an MPN Specialist. My ET progressed to PV about 6 years ago and my hematologist missed it. The MPN Specialist I consulted with caught the error and corrected my treatment plan. More importantly, he looked at my individual profile and recommended a treatment plan based on my presentation of PV. One of the things I have learned on this journey is that all of the MPNs can present in different ways and the standard protocols do not always apply.

As scary as the progression of a MPN is, it is not the end of your story. Hopefully you will get an accurate diagnosis ASAP and a treatment plan that is individualized to your specific presentation and needs. No matter what, know that you are not alone and there will always be support available to you on this part of your journey.

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I agree what hunter said. Different treatments are available now, think positive, we're all behind you. Xx

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Hi Cindy, so sorry to hear of your possible progression, don't get ahead of yourself as you won't really know until the bmb is done. I am also an ET patient and always wonder when the progression will occur even though I have read that most patients with ET/PV don't progress. May I ask what your new Heme is basing her conclusion upon? Best of luck always.

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Interesting question. I have been anemic since the beginning of the year and none of the medications I’m taking have helped. Also, my platelets have been consistently high this year. I brought her my original diagnosis 11 years ago and all my results from my blood work from the last 6 months. But, as you said, I won’t know anything for sure until after next week. My BMB is next Friday.

Best wishes to you, too.

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Well if anaemia is the main factor then I’m in the same boat. I’ve now been put on iron tablets but they are not making a huge impact.

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Wishing you good results on your BMB, good luck on Friday.

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Thank you. Fingers crossed.

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Sorry but what is SCT?

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It stands for stem cell transplant.

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Hope all okay with you Cja In thought

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Thank you, Abbamania,

My doctor has also ordered an ultrasound and more bloodwork. Still hoping she is wrong about myelofibrosis.

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