ET and who lives in the US: So many people live... - MPN Voice

MPN Voice

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ET and who lives in the US

mickey64
mickey64

So many people live abroad that I was wondering how many live in the US and where, how old, are you on meds and what was your platelet count when diag. So many questions, sorry but new to this diagnosis. Thanks Mickey

I actually went on the MPN website on facebook, found a few people in the US, message them but no response a little disappointing to say the least.

Oh by the way Maryland.

26 Replies
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Texas 58 at diagnosis. On a daily aspirin. platelets jump between 450 -500.

mickey64
mickey64 in reply to cannonfire

Hi Texas, did they diag you with ET? that's pretty low platelets. hardly above normal. So you don't any meds other then aspirin right?. You said 58 at diag, how old are you now? sorry for all the questions. Thanks Mickey

cannonfire
cannonfire in reply to mickey64

Questions are good. Diagnosed ET JAK 2 pos. I'm 59 now. Yes, platelets are not bad. Thank the Lord. No other meds for my et other than aspirin. I take blood pressure medicine and statins for cholesterol.

mickey64
mickey64 in reply to cannonfire

Cannonfire, are you near MD Anderson? they are having a conference on MPN on October 24, its free to anyone who wants to attend or you can register to attend on-line like I did. If I live in Texas I would be definetly have gone. If you want I can send you the link they are supposed to have lots of experts there..

cannonfire
cannonfire in reply to mickey64

Oh wow the info would be great. Maybe I can work it out I don't live near Houston.

48 yo. On interferon b/c I had 2 strokes with platelets at 453. Connecticut. Btw- I'm considered mpn - undefined as I have attributes of et, pv and early mf.

mickey64
mickey64 in reply to Cdseiter

How are you doing on the interferon?? and hello to you in Connecticut!

I hear that I am atypical on that as well. The interferon has not given me any problems. I have to watch my hydration and occasionally I have mildly elevated liver enzymes but they are not sure if the liver values are from the disease or the meds. So…seems good to me.

I live in NJ. I've had et and pv for 3 years . I'm a 45 year old female. I've been on aspirin and occasional phlebotomy when needed. I started Pegasys 6 months ago and my numbers haven't moved . my platelet count is 1.6 million. It was 897,000 when diagnosed. Hope this helps !

Hi Mickey,

There is a mailing list called mpdsupport with people mostly in the US. You can join the list and you will get a daily email, but you can also search their database for informations on ET and treatments. Also the owner of the list is great and has a lot of knowledge about MPD's (he has PV) and is always available for questions.

Here is the info on how to join the list:

To post, email to: MPDSUPPORT@LISTSERV.ICORS.ORG

Search, Join, Leave, Post, or Change Settings: listserv.icors.org/SCRIPTS/...

snipurl.com/hare read MPD questions and add your own comments.

Main mpdsupport.org / MPD files @ snipurl.com/wo88

Zlata, ET since 1999, JAK2 negative, Roferon-A 6x3 miu weekly, daily aspirin

mickey64
mickey64 in reply to zvinkovic

Thank you so much! Really appreciate! :)

Hi Mickey. I live in Wisconsin and Florida and am 64. Was diagnosed 2 years ago when almost died from blood clots in both lungs. My platelet count then not relevant because forming clots I'm told affects the numbers. Over the past year my platelets have ranged from 580-925. Was on warfarin up until last month but formed clots within days of INR level dipping below 2.0 even though platelet levels around. 600. Specialist on blood clotting said I clot extremely easily. Now on Eliquis (3 weeks ago) and Hydroxy (2 weeks ago). No side effects yet except dry skin which could be caused by weather turning cooler and drier. Only advice I can give is to read as many posts as possible. It made me feel much less alone and that I'm among friends. Good luck to you and hang in there.

mickey64
mickey64 in reply to katiewalsh

Hi Katie, good to know you have no side effects. Can you tell me how much you take, I'm starting next week. Thanks and its good to know you! I suspect you go to Florida in the winter??. Years ago my best friend was a girl named Pat Walsh, any relationship? She would be about my age and they moved to Florida when I was about 12 years old, we grew up together in the same neighborhood, I have always tried to reconnect with her but no luck finding her. Just curious.

katiewalsh
katiewalsh in reply to mickey64

Hi Mickey. This week I'm taking 500mg for 5 days. Last week, my first, it was 3 times. Don't have my blood tests til Wednesday to know it'll be increased again. Yup, FL in winter which is good cuz Wisconsin winter temps screw up my breathing (I have asthma) so difficult to be outside. I do have a cousin named Pat but she has always lived on the west coast. Have you tried looking for her on Facebook or LinkedIn or classmates? Katie.

I'm in PA, diagnosed this year at age 61 with ET, JAK 2'positive. Last numbers were 650, still only on baby aspirin. Waiting for next blood test the end of this month to decide whether to start Hydrox.

Sklines
Sklines in reply to Kathymoore

Hi, I am in Pa also. Bloomsburg, which is near Wilkes Barre/Scranton. Where in PA are you located? I go to Geisinger mainly. I have been told there are other patients being treated there but of course they cannot give me names due to privacy laws. Would love to connect with others near me.

Kathymoore
Kathymoore in reply to Sklines

Hi,

I live in Jeffersonville, which is around 30 minutes outside of Philadelphia. I see a local Hematologist, who doesn’t really know much about ET, but I get my levels checked every 3 months. I am on 2 Hydroxyureah a day, plus baby aspirin. My levels fluctuate between 550 to 750. I see an expert in Philadelphia at Abramson Cancer Center once a year just to check everything. Her name is Dr. Elizabeth Hexner.

mickey64
mickey64 in reply to Kathymoore

Hey there Kathy so good to hear from you. I still go to Hopkins every 6 months and my local. Still not on meds but trying Pegasy soon. Hoping for no side effects. How are you doing on the HU.

Kathymoore
Kathymoore in reply to mickey64

Great, ver y fortunate, no major side effects. Occasional hot flashes, but that is it.

Hey there, we are very close in age and close in numbers. I also am Jak2+. My last numbers were 743, but in Sept was 650 and in July was 750 I think, seem to jump around quite a bit but my hemo Dr now has me on blood work every two weeks, I'm told platelets only last about 7 days so maybe that's why the numbers jump around like that. I'm still hesitant about the hydroxea, but Dr insists gotta get it down to 400. I know people who are just on aspirin and some that are not. I really hate this whole thing maybe if the pill was not so toxic we would all feel better. But then again who wants a stroke no one that's for sure. Let me know how your apt goes, we are close and if you have to start the meds we can do those hurdles together :). So far being over 60 is my only risk factor.

Hi Mickey - just seeing this post and wondering if you found contacts / groups for US based ET patients?

I find so much of the information from everyone is EXTREMELY helpful, whether in the UK or not and so appreciate being able to read about all the advances and great support that is available even if it's not in the USA.

My medical group seems to reference dated information - meaning they weren't aware or refer to the MPN Research Foundation - which is incredibly packed with credible / helpful information. The end result is that they are less empathetic / more dismissive and it's hard. I find that the best part about this site, is reading others who are experiencing the same symptoms as I am often told by my hematologist that

"It's not cancer, not really", "You can't feel platelets - so the the numbness in hands and feet and face are probably not related" (though other patients claim they have very similar symptoms) "You shouldn't even notice you have it, most don't even know b/c it's life as normal" (though I started going to the dr. over the course of 3 years b/c I kept feeling such a drop in my energy levels and increased head aches and was again told - it was nothing or not related!)

My diagnosis came in Jan of 2018, with platelets at 524, JAK2+, then one one month later 603, and last month 624, so a continued increase but again told - not to worry. 2 baby aspirin a day. I was also told no more high intense work outs, and I probably should avoid flying (when I asked about it b/c we were taking a trip to Europe) Really? Also, at the time someone I thought was a close friend, who has a medical back ground, was also very dismissive and told me I "should be so thankful this is all I have b/c it's not cancer and I should celebrate this "win" b/c it could be worse. I could have a cancer that is growing and creating a deadly tumor that is spreading all throughout my body?" All this at the time I was just reading and learning about this and just trying to get a grip on what it meant - according to that person.. Pretty much a non issue. Shouldn't tell my family or kids about it.. b/c it's really not a big deal." I wasn't having a pitty party.. I was truly just in the info. gathering phase, and quickly found the MPN site, that gave me great encouragement and info.. but that mentioned YES cancer... which I apologize.. just took a little time to digest.

My hematologist pretty much made me feel like I had nothing, and didn't need to worry - but then told me to avoid flying and no intense workouts. Good thing I have this site b/c I have been reading about others who say they are constantly battling the exhaustion and leg aches and that exercise actually helps with the fatigue.

Would love to connect with some other patients in USA - just to know which health care system they are in / recommend because as soon as I can switch out of mine - I am! I would love to have a doctor group that is current with symptoms, treatments and is more empathetic. YES I know I don't have a cancer that I requires radiation or can be cut out so maybe in the medical community that I'm in, it's no big deal? But finding out you have a blood cancer, with platelets that keep multiplying - that can lead to stroke or heart attack - which YES you can still live after but often not without a great impact to your quality of life - just feels - crummy and frustrating. Am I wrong or being too emotional?

Mickey. I am 56 and live in Florida ( originally from Outside if Pittsburgh, Pa). I am myleofibrosis Jac negative. I was on 4-500 mg hydrea a day for four years and it stopped working a year ago. My platelets shot up to over a million. I was on Jacksfi for a very short time until I went to Moffitt Cancer Center and they said since I had none of the symptoms that it treats that I should stop taking it.

I was originally diagnosed with ET some 15 or more years ago and was on anegrelide for many years. My disease is definitely progressing and my fibrosis has increased. I am currently undergoing testing for a transplant. My white count recently shot up over 100 so unfortunately last week I had to start chemo.

I am concerned about the transplant but very fortunate that I live so close to Moffitt and MY SISTER IS A PERFECT MATCH!!!!

I will be doing the transplant some time between January and April of 2019. While the whole process is very frightening, I feel it is all in God’s hands.

I work full time and get fatigued but I struggle with sleep so it’s difficult to know exactly what’s a symptom and what’s menopause. I too wold like to connect with others in the Us. Take care! Mary

I live in GA and was diagnosed with ET in late 2011 with platelets around 700. I was 55 at the time, and now at 61, there are perhaps some other things going on, but nothing to alarming. I have been an active soccer player for 40 years and don't intend to stop anytime soon, and love to garden (pulling weeds, planting veggies and flowers, growing native plants and so on). I have been on Hydroxyurea almost since the beginning since I can't take aspirin (even baby aspirin) due to having another diagnosis-ulcerative colitis. So far all has been well, except for only occasional soreness under my tongue, and very recently two skin cancers (basel cell carcinoma) which have a good chance of being related to the Hydroxy use. I have had the attitude that yes I have a rare form of cancer, but I'm fine and will keep on doing what I love (that includes hiking and sometimes world travel).

At this point I'm not sure about any mutations in genes that I have. At first in 2012 I was told I was JAK2 positive, but recently I was told no, JAK2 is negative. CALR and MPL are being checked on now that I have a hematologist who specializes in MPNs and is an MPN hero! From here on I should be in great hands in terms of Drs.

OK guys just saw this sorry but I am usually on the US forums or working or stressing over something. Well I am way older then both of you (67). I am Jak2 and platelets over a million, however I do see a true expert who says everything else is ok and not to worry. I did take HU for 4 months and it hardly touch my platelets, but the expert told me to get off of it mainly for two reasons, I had pervious cancer and he said people 65 or older tend to get leukemia more so without an MPN. My local does not agree at all wants me on medicine, want me to try Pegasy which I did get approved and might give it a shot. I know people who do wonderful on HU without any side effects and then some who do horrible, same as with interferon or Jakifi. Seems we are all different. I am interesting in the genetic testing and I think that tells more of our disease whether it is aggressive or not and what medicine will not work with us. Wish it was one size fits all but it is not and wish all the experts would agree on everything which they do not. But I have seen some drastic changes over the last two years in the experts thinking so who knows maybe in our lifetime we will see something better for us.

Oh and by the way I am from Maryland but looking forward to moving soon, maybe to Florida!

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