Anyone with ET that has progressed to MF? - MPN Voice

MPN Voice

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Anyone with ET that has progressed to MF?

JenngeetingR828
JenngeetingR828

My symptoms have seemed to have progressed - more bone pain, night sweats, bloating, nausea, high fatigue and flue like symptoms that come and go during the day.

I have been taking two 500 mg of Hydroxyurea a day for the last 18 months. Initially it seemed to help, ok but lately my symptoms seemed to have increased to daily and stronger.

My initial BmB - said ET, but that pre MF couldn’t it be ruled out.

My oncologist wants to do another BMB. I’m scared. I’m 50, have had ET for 2.5 years

51 Replies
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Hi, yes it feels a bit daunting when symptoms change and you feel different. BUT a BMB is the best wat to know what is going on and then your medication can be adjusted, if needed. Quite often the worries are making it worse than the actual problem so, if you can, try not to worry and think too much. It might be something happening but it not not be either. Do things you like and try to take every day as they come. Take care!

Thanks Swede. I’m scared more bc with ET - they say a “normal” life span and I feel young with 3 teens still in the house. With MF, I’m reading of a much shorter span - it’s too scary to contemplate. I will try to just focus on what is known. Just wondered about longevity for those with MF and hoping to read stories of living with it for a long time!🙏🏻

I should be banned from writing without glasses as I always spell things madly wrong, sorry. Anyroad, I got ET 2007 (well, diagnosed)and was terrified. Then...I settled down a bit. Got MF and was terrified, read all...became terrified and stopped reading all online etc. Now, it feels calmer, sometimes I have a period of worries and sadness but I can handle it. So when "The Covid" arrived I was fine with being confined to the house and garden. Really! Yes, I cleaned but I do that alot anyway as I work in a dental practice a s the infection control lead and decontamination lead. I enjoyed crocheting, listening to radioprograms (yes, I am that old), sorting out my wardrobe and cook stuff I had forgotten or not been bothered to do for ages. My husband was at home as well and dealt with a bit of painting and so forth. We work together and see each other 24 hours aday normally , so we are used to that. No Corona-fights! I now wonder why I was so worried about ET! It all depends what you compare things with. So, enjoy today and dont read all the stuff online. Small bits now and then in enough. Take care!

JackLina
JackLina in reply to Swede

So true. this is what I tend to do now. Little and often. If it relates to my experience and I can help, I do. Otherwise I move on and get on with my life. It is changed because fatigue rules now but I know I'm much better than many. All the best.

Progression is a huge fear of mine bc I am 36 with 3 small children, but I posted about that a few weeks ago and a couple of people responded that they had progressed and had been doing well! Someone posted so much info about his wife having progressed 8 years or so ago and was still doing amazing. I believe he said her doctor thought she would live a much longer, great life.

I think if you click my name you can see the posts I’ve posted and it should be the most recent one.. lots of comments about people who have progressed and are doing well...

hopefully that’s not what’s happening to you and you don’t even need to worry about that though 😉

Thank you so much! I will click your name and read! If I do have it, it would seem to be early stages - I hope! Just hate the BMB... last time my husband was able to come in and hold my hand while I got through it. With Covid 19, he can only drop me off at the curb! ;(

I hadn’t even thought of that. How awful :( I’m sorry!

Yes, I was diagnosed with ET in 2008 and then MF last year. In 2018, I started going downhill and feeling really out of it, unable to concentrate, increased balance issues, and having frequent infections. My long time hematologist couldn’t seem to figure out what to do, so I got a second opinion, had another BMB, ultrasound, and tons of bloodwork. My new doctor confirmed my suspicions and she’s been treating me ever since. My numbers have been stable for the last few months and I feel so much better. After going every week for 4 months, since January, I only go every month or two.

Hi Cja1956 - thanks for sharing. So encouraging to hear you are feeling better!👍🏻 I also wondered if others experience heart palpitations- I seem to have more and more lately and just try to slow down and breathe through them and wait for them to pass. Your symptoms of dizziness or imbalance are not really anything I have experienced. Sorry you had that glad your meds have improved things. My dr. Is talking about switching me from Hydroxyurea to Jakify. Will see what happens.

Thanks again for sharing your information.

Yes, heart palpitations and shortness of breath are definitely symptoms. When I was first diagnosed in 2008, I wasn’t aware of this and I even went to a cardiologist and had all these tests done and my heart was perfectly fine. I’ve been on hydroxy, anagrelide, jakafi, and baby aspirin over the years, with many adjustments. Jakafi gave me the least side effects. When I changed to my new doctor last year, she took me off of everything but hydroxy and baby aspirin and put me on new meds called fedratinib, which had been just approved by the US for MF. It has been a life-saver. The fact that she is an mpn specialist made a huge difference in my treatment.

I wish you all the best.

Wow.. thank you for sharing. The heart palpitations I have had off and in.. but a lot more these last few weeks . When I have told my doctors before, both my oncologist and GP, they have me do all these heart tests (stress test) and then tell me I’m fine too. The palpitations were more sporadic a couple years ago - lately they have been almost every day ;( I will get to talk to my oncologist / haemotologist next week and will bring up what you shared. Thanks so much!

Well, you’ll find that this site has many caring people with much information to share. I only found it 2 years ago and it’s because of some of the advice I received, I found the courage to finally “fire my doctor” and find an mpn specialist. She has made all the difference in the world.

Good luck to you on your mpn journey.

Cindy

I couldn’t agree with you more! This site is so helpful! Are you in the UK or USA?

USA

I love reading about stories and care all over the world - just nice to know where people are as it helps with making suggestions to my Dr! 😉

Me, too. I love the U.K. I’ve been there 3 times and my son’s favorite place to visit in the world is Scotland. I also have friends in Manchester.

That’s awesome! My husband and I got to visit Scotland last year as part of a work trip he had! Beautiful part of the world! I absolutely loved it!

Jenn, the Hydroxyurea causes magnesium loss. which can result with palpitations. Try increasing magnesium, search on "krispin magnesium" and "mgwater" for more info. Also search on "nothing boring about boron"

Thank you so much! I will check that out ASAP!

Apparently I have! 😞

My last bloodwork showed my haemocrit level was up to 45 and platelets up to 1100, so my haem is now saying it’s PV, not ET

Sorry to hear! Hope you are doing well despite the change.

Hi.

My symptoms were the same in 2018, I know in myself I wasn’t well.

I had blood tests and bone marrow test done. It came back I have scarring in my bone marrow.

I was so scared, but they reassured me it was only a small amount and they weren’t worried.

They started me on Anagrelide. It took a while to get the right dose to help me feel ok.

I still get all the symptoms but not as bad. The bone ache is at it’s worst when it is cold and in winter.

Folic Acid helps with bone ache ask your doctor if you can take it.

It is scary going for a BMB but if I had to do it again I would. (If they make me sleepy). I hope everything goes well for you.

I live my days as one step at a time, face it when it comes.

Take care.

Thank you Wendycu - I appreciate your story and perspective. I also have wondered about folic acid and will ask my dr. Thank you for the reminder - one day at a time.

Hi. My story is very similar to yours. I had ET for 5 years diagnosed at 42 but then last summer started feeling many of the symptoms you described. After another BMB Ihad progressed to MF so were given Ruxolitinib 10mg twice a day.

After being very apprehensive about the side effects it turned out to be the best outcome. I feel really good, my blood results are stable now and after a drop in platelets to 70/80 initially they are maintaining at 150.

Feeling your new symptoms can be scary but there is medication out there to help, be positive and make sure you communicate with your heamotogist.

Sending best wishes

Jo

Hi Joall / thank you for the encouraging words. My Dr. has said he’d like to move me to Jakify if things have progressed. I’ll ask about Ruxolitinib. Does your Dr. discuss life span with you? Maybe they don’t .. and maybe things are changing in the area of this disease - I’ll try hard to remain optimistic 😉.

Dont let life span take over. Everyone is different and have different symptoms and side effects to medication. My advice is to live life to the fullest and if you have to increase your medication go with it and try not to worry what could be.

I wish you all the best and keep us informed of your progress. Dm me at any time if you want a chat.

Jo x

Thanks so much Joall. I do so good on days where my symptoms are minor and I even tell myself that maybe I’m over thinking the bad days. I’m trying not to think k about the up coming BMB.. I agree having information is better than wondering! Thanks again for the well wishes.

When I was diagnosed in 2018 the mpn specialist I visited said that most ET patients will live a "near" normal lifespan. I asked him what that meant and he did not have a definite answer. I looked on the social security website for the normal lifespan for someone born in 1949 as was I and it said 68.5 years, I am 70, go figure.

Thanks! I believe with ET there is literature that suggests a “normal life span” but for MF I think I have read something more along the reference of 2-11 years. I also know - there are outliers within those ranges and one should never limit themselves to stats but just a little scary! One day at a time and appreciation for every minute is key! 😉

Hi there,

This is all new to me as I was diagnosed with ET and jak2 last October. I am 47.

I have been following this support group and page since but haven’t posted before.

I also have concerns about progression, due to increased symptoms.

When diagnosed, I saw a nutritionist and kinesiologist. I started an anti inflammatory diet and omitted some foods and lactose, as recommended. My energy levels increased immediately.

I also read up about the spoon theory. A good reminder to pace yourself 😊

My symptoms have started to increase slightly but what I have been reminded is that the menopause can also have very similar symptoms. Obviously, difficult to determine the difference without further investigations.

I just wanted to share my thoughts as I’m always keen to read about others.

Good luck with your BMB

Claire 😊

Hi Claire - thank you for your story. It is hard to share or post for the first time - but can also be so good as you connect to others with similar journeys. I would love to know what types of changes you made in your diet and I’m going to look up the spoon theory as I Don t know what that is.

I also agree that tracking our symptoms are key and sharing them here is also informative as we can all read and sort to find similarities with our own.

As for the menopause comment - we get that a lot bc of our similar symptoms. It’s frustrating to know what is causing things. You can get a hormone test to tell you where your numbers are - night sweats are more for our condition - I’m told than from menopause.

Thanks again for sharing 😉

Hi,

Under the NHS for the same as you, no one has mentioned diet. Could I ask about what you were recommended please for ET? My energy levels are very unpredictable and if its diet I would love to try .

Many thanks

Hi - I wasn’t given a diet recommendation- though I have read of others being given suggestions on eating “clean” no processed foods - instead fresh fruits and veggies - little to no red meat.. those things. I’d love recommendations too.

Thank you for your reply , been doing that already so I will Look into that side . If I find anything I will let you know

Best wishes

I had the same problem but never took the medication you’re on because I told the doctor prescribing that medication that I wanted a second opinion, long story short I changed doctors and now I’m on a drug called Jakafi

Good luck and best wishes

Thanks Plumberasscrack (funny name by the way! Hahahahaha)

My Dr. wants to switch to that. How long have you been taking it? Would love to know how you are feeling now and what your prognosis is.

Thanks again.

Good morning and Happy 4th of July, I’ve been on Jakafi for two months now, started with 10mg twice a day and now taking 20mg twice a day.

Awe thanks! Are you in the US too? If so Happy 4th! Thanks for the update. I like that the dosage seems less than then quantity of Hydroxyurea I current take which is 1,000 mg a day! Hoping a good change is ahead. Spending the 4th with family.. looking forward to it! ❤️

You’re welcome, I’m in South Carolina now came here a year ago from NYC.

Good luck and hopefully you can feel the difference if your doctors prescribe Jakafi

Have a Blessed 4th with your family

Thanks! Will post as I know more!

Has your haemotoligist tried reducing or giving you a break from the the hydroxy? I was getting a lot of bone pain etc and when I was given a break it did seem to reduce. Ofcourse my platelets shot up and I had to go back on it, but it proved a point.

We have tried altering the dose which has made a higher difference in how I feel. But not taking me off. Without it I have many symptoms that are debilitating ;(. Fortunately it has helped a lot. It has just been the last 3-4 months where I have new symptoms.

As many folk on here know I am an MPN ‘old-timer’! I was diagnosed with ET in 1994 at which time I had four sons aged 8 to 14. Scary times but as the internet was in its infancy I had little information to go on. I just kept taking the HU and attending my appointments but otherwise had little time to dwell on my situation. Things changed again in 2012 when I was diagnosed with post ET MF. That did scare me more as the prognosis now appeared to be much poorer. I can remember just after MF diagnosis bursting into tears at my eldest son’s wedding as I thought I would never see his children or my other sons looking as happy on their wedding day as he did.

Well I’m still here with two grandchildren and another on the way and another wedding unfortunately cancelled by Covid. Ok, at nearly 71 I can and do now take life much slower and I’m transfusion dependent with other blood counts also very low. I still try and take life a day at a time but even before Covid I tried to limit my risk of infection. As I have said here many times before MPNs are very individual and by their very nature life expectancy statistics are historical. There is now so much research happening in out field that those statistics will hopefully soon become irrelevant

My advice is to try and keep MPN on the back burner as much as possible and embrace life day to day. Take care and very best wishes, Jan

Bless you! Thanks for sharing! I have been so encouraged by all the stories people have been sharing and thank God for this connection! It’s helpful to read your account onyour journey and will pray for the best.

Hi, this is a very timely question for me. I am having my first bmb on tuesday as my bloods have been bonkers, felt ill and exhausted for nearly a year, a bad whitlow, and abscess under my arm that hasnt gone away. I have PV, diagnosed 5 years ago, on 500 hydroxy a day. I am nervous of the bmb, but excited that at least I may have an answer to all the problems I have been dealing with. Local consultant thinks a change of med if indicated could help me. Fingers crossed.

Mal

Sorry to hear of how you have been feeling . I get the anticipation of wanting to get answers and change in treatment that could help. I will keep you in my prayers!

It can be really hard to figure out what is the MPN and what is the medication side effects. A good bit of what you are describing could in fact be the hydroxyurea. While providing benefits, HU is not a benign substance and signs of toxicity are common at therapeutic doses. You noted the doc is considering a switch to Jakafi. This sounds like a really good idea to try. Jakafi is easier for many people to tolerate and tend to lead to remission of secondary symptoms far better than HU.

FYI - I was diagnosed with ET over 30 years ago. My ET progressed to PV about 7 years ago. Two things I noted as the MPN progressed were by blood pressure went up into Stage 1 hypertension and I started to bleed/bruise excessively. Treatment with phlebotomy reduced my BP as it decreased viscosity. The MPN specialist took me off aspirin, noting my risk of bleeding was greater than my risk of clotting.

I actually have had more trouble with issues related to systemic inflammation due to the JAK2 mutation. GERD, osteoarthritis, plantar fascitis, insomnia, eczema, etc. Most hematologists do not really look at these more systemic issues. I now consult with an Integrative Medicine doc to help with this. There are things you can do that help to improve your quality of life when you have a MPN.

Hope you see some relief soon. Please let us know how you get on.

Thanks Hunter! I am so appreciate of your story and will be talking with my Dr. on the 14th and will ask about many of the similar symptoms you also noted and how he might treat them. Thank you.

My wife was on Hydrea for nine years then Anagrelide. I learned tocotrienol from red palm oil lowers platelets and with her oncologist's approval, she started with 50mg at breakfast and when her platelets which had remained near a million for a number of years started downward she added 50mg at supper until she was taken off Anagrelide when rhe platelets entered the normal range. We thought mission accomplished. She was never told about progression or stem cell transplants. A year and a half later a bmb showed progression to MF. For almost six years she controlled MF and symptoms with liposomal C & liposomal curcumin plus selenium and K2MK4 plus the usual supplements. Also investigate flavinoids such as quercetin, kaempferol and fisetin as they apply to senescent cells and MPN's which I just learned about. Senescent cells create inflammation. Always discuss supplements with your health care professional.

Hi just reading this as not been on for a while. It’s like reading about myself, I’ve just turned 55 diagnosed ET Jak2 pos, 3 1/2 years ago, took me a long time to accept it. But eventually stopped worrying about it with the help of some one to one meetings, arranged by the hospital with a physiologist. But now my last Heamatology appointment over the phone my platelets are steadily going up and the last few weeks, I’m really tired, lots of bone pain, more sweats, more than I’ve been suffering with I think the menopause, so now I’m worried if it’s progressing, I’m waiting to see if I can bring my appointment forward to check my bloods, but it’s set me off worrying again, with the life span thing! I have been doing more exercise and having a protein shake a day and wondering if that could be effecting my platelets due to Jak2 being down to the protein in your bloods?

I've only just read this thread and I hope that you are now getting help/changed medications etc to ease your symptoms.

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