MPN Voice
2,998 members4,557 posts

Fun

Well I feel like I’m never going to have fun anymore. Diagnosed with ET in January

Spending winter in Florida and am on hydroxy. Had a sip of wine got sick and had to go home. Am afraid to try again and I really wonder if my life will ever be the same again.

I have episodes of not feeling well. Seems like every other day. I was always the life of the party. I dont complain in front of my friends

When I dont feel well I just stay home.

I started hydroxy middle of January. Will I ever be myself again I work out every other day. I really do try to fight through it but it’s really getting me down

29 Replies
oldestnewest

How very disappointing for you to have to come home ...is it the hydroxy that's making you feel unwell as your specialist could discuss alternatives with you or is it the et ? .... I felt similar to you when I first was diagnosed but it has got better in time . I was depressed but like you fought it and eventually there was improvement. .. Don't suffer in silence , get a second opinion if necessary . We're all behind you and I'm sure lots of us have been there ... It will get better .... Wishing you well .

2 likes
Reply

This is the place to complain about how you feel, I'm the same I go out with my friends have a good laugh, good times & sometimes when i'm on my own I feel so crap. But my having a good time has definitely not ended. I still go out and still have a laugh, I've had to cut down on my drinking as it makes me feel a bit rubbish. I tend to have quite a few soft drinks in between pints. I think what you have to do is when you feel rubbish, dont focus on it when you do have a nice time focus on it. I wish you all the best - Raff

7 likes
Reply

Petsch

There is no ‘one size fits all’ drug. Some people have an awful reaction to Inf or HU but no problems other way round. Then there are other third line choices that work effectively.

It is critical that you make your Hem aware of your issues and that he is an MPN Specialist, hence able to advise authoritively.

Not being able to enjoy a glass of wine is my worst nightmare! Please keep preservering, there is no reason why you can’t enjoy a good quality of life. Just need to determine optimum treatment plan.

Best Paul

5 likes
Reply

Hi Petsch

Sorry to hear that you are feeling so low. It is an emotional roller coaster, but to echo others comments here take the good when it is here and focus there.

As Paul says you may need to adjust medication for you. But you're doing the right thing in exercising. Just keep on persevering.... Do rest too. My big learn has been that I can do everything I need to IF I pace myself. If I overdo it I end up feeling poor.

Fun can be just around the corner... for instance I have one day off tomorrow. The way I'm feeling you'd think it was a month 😁

Sending you my best wishes

Katherine

6 likes
Reply

Hi Petsch, sorry to hear that you are feeling down and unwell with your ET all I can say is that things will get better. You are doing all the right things, like keeping fit.

When I first went on Hydroxy it was with great intrepedation and all it side effects, as I reacted badly to most drugs but hey after a couple of months I got my life back and after a year my bloods were all normal, which after years of being unwell with one thing or another life was good again. I now enjoy a couple of glasses of wine when out with friends and enjoy every minute of it, OK I am not a big drinker and always have something to eat with the wine, never consume without food.as I feel this upsets my stomach, PLUS I make sure that I drink the 2ltrs of water a day this is to stop any dehydration. It is such a shame that you felt you had to go home, as if given time you will be feeling like your old self, have an open mind about it being the Hydroxy most people on here tolorate it really well, but if you think it could be the drug and not a tummy bug or something you might of eaten, speak with your Haematologist to see what they think, do not just assume it is the drug that made you sick, we all have been there, you must speak with them and tell them how you feel.

I have friends that live in St Petersburg Florida, and I think they used to call the people that came down to Florida for the winter as the Snow Birds, are you one of these lovely people, mind you we have just had a very harsh week weather wise with lots of snow and freezing rain yuk!! Give anything to be In Florida 🌞

Jean

2 likes
Reply

I am a snow bird I’m from Ohio where it’s cold and snowing. We come to naples Florida for 3 months. It’s beautiful. Thanks for responding it’s just hard to deal with my new life as I was alwAys so healthy.

3 likes
Reply

I love it. Buck up. M from the United States and that’s the cutest reply so far. Thank you. You are absolutely correct. Could always be worse

Reply

Hi Petsch, I am also from the US. You say your from Ohio you have one of the best MPN hospital and experts there. I have a friend who just went there from PA, please go to MPN voice and look up the experts I'm pretty sure they have a list. Now you have mentioned no age, mutation or platelet count??. Maybe you don't need meds right now but I suspect since you call yourself a snowbird you are retired?. I really think it is the adjusting to the disease and not as much the medicine although the medicine does come with side effects and when you think about it all medicine does, but there are alternatives. For me it was the wrapping my head around a disease that is rare, incurable and ever changing and I'm a former cancer survivor and this was worse for me. when I say ever changing I mean the doctors and the experts. I am well over 60 I am also Jak2+ and my platelets are high very high and have been, I was on HU and I had all the side effects but nothing I could not deal with except the brain fog because I have a very detailed job and I'm a caregiver. So I saw not one but two experts and they both said no medicine yet, but they looked at HX, Health, symptoms and all blood work not just platelets. Yep I feel crappy most of the time but I have to tell you before I knew I had this a whole year before my platelets were super high and I did not feel bad at all, once I got diagnosed (which by the way was me looking at a wellness test for work that said Dr called on my sugar not my platelets) I felt terrible and every little thing I thought this is it and I moaned and groaned in silence my anxiety was at an all time high. I still cannot wrap my head around this disease, I worry all the time and think everything is ET. Plus I question the experts. LOL Now there are other medicine and some people work well on one or the other or maybe you just need a lower dose of HU, one expert said to me it is not a marathon unless there is an urgent reason to get them down like surgery etc it takes time!. I think us older folks do better on HU but there are many older who do well on the others (like AG or Pegasy). So not knowing your journey (age, mutation, platelet level HX) I would say if you say your healthy, you can travel to beautiful florida you need to rest your mind and say this disease does not define me! And see an expert at least once. Wishing you well.

1 like
Reply

I am 69 have the jak Jean thanks to my mom. Lol. I am on HU. What is the best hospital for this disease Why were you taken off meds once you started them. Please let me know dr and hospital in Ohio. I’m from Cleveland.

Reply

Can I ask why you say you have jak gene ‘thanks to your mom’ ? Jak2 is not inherited?

1 like
Reply

His name is Doctor Aaron Gerds and he is in Cleveland Hospital, please look him up he is an MPN specialist! Good luck.

Reply

Buck up, as the British say.

Take the medicine, exercise, exercise, and get on a mediterranean diet, then carry on.

The Hy has reduced my platelets from 780+ down to 346.

Easy on the alcohol. Avoid undue stress.

Then, resolve to enjoy life.

You'll be fine.

VMS

4 likes
Reply

I'm sorry to hear how you are feeling. When I was diagnosed in 1994 I was completely in the dark as the internet was only in its infancy. I did not question starting HU as I knew my haematologist was quite concerned about me. I do remember feeling nauseous to start with but that wore off. I had four children under 12 at the time so I had no choice but to carry on having fun. The boys were all into different activities and I guess I didn't think an awful lot about being sick. There just wasn't time! I carried on taking the tablets and attending clinic appointments but to all other intents and purposes I put ET on a back burner.

I really hope you will find a way to cope. Maybe as others have said HU is not for you and an alternative might be better tolerated. Speak to your specialist about how you are feeling too. I feel sure that things will improve for you.

Very best wishes, Jan x

4 likes
Reply

Hi Petsch,

Your diagnosis is an awful shock to the system. I too was life and soul of party I had to cancel my 60th birthday party and a 3 week trip to Thailand. it’s taken me over 2 yrs to come to terms withET. I’m still working out how to deal with my bad days. I can tell when my platelets and HB rise and fall. I go breathless and lethargic. I’m nearly always anaemic.

However, you can live!!!

The best piece of advice I read was if you can afford home help get it!

This will allow you to spend your healthy time enjoying yourself..

you must allow yourself rest days.

Talk to your Haemo.

We are all different

I think of people worse of than me.

I have 4 healthy limbs, my eyes work. There are so many people worse off than me. That’s what gets me through the bad times.

I wish you well, give yourself time and seek medical advice.

Xx

4 likes
Reply

Hello there,

It does take some time to adjust to these diseases. Your feelings are normal, as others have stated there is no one size fits all or neat and tidy algorithm like other chronic diseases. It take some time to learn what works best in terms of exercise, etc. Try to do something you love every day, this helped me immensely, as did getting more sleep.

I have learned to be patient with myself, while I traverse the new normal! lf you can, see an Mpn specialist, many options in the US. I just went to MD Anderson recently, as I live in Texas. These specialists are so knowledgeable on treatment options.

Take good care.

1 like
Reply

Hi Petsch,

Looks like we have a lot in common. I was diagnosed in December as having Jak2+ ET. I am 68 and live just across the river from Marietta, Ohio. I found out in Dec that I probably have had ET for at least 6 yrs and probably more. I always felt normal until the day my GP referred me to a hematologist. The day after seeing the hematologist I started having many of the symptoms I read about on the web. I have good days and not so good days since then. I think a lot of the symptoms are psychological- depression, I am considering meds to treat the depression that comes with this diagnosis.

I do have a very good hematologist that has a very positive attitude and assures me that things are going to be ok and that helps a lot. I am starting to feel better over these last 4 months and I assume that is adjusting to the diagnosis. I try to exercise 30-40 minutes every day that I can and feel better after exercising. I just had a BMB 4 days ago and will get the results soon. Will probable start on ET meds soon after that only on aspirin right now.

I feel certain that you will start feeling more of your normal self as you adjust to the diagnosis and the meds, I base that a lot on all of the information and support that I have read on this site and what my hematologist has told me. The worst thing for me is the uncertainty of the future. I think we just have to think positive, keep up the faith and just keep going as hard as we can for as long as we can.

Please let us know if you find the name and location of a MPN specialist or hospital in or near ohio. I have read that the Mayo Clinic treats over 1800 patients with ET every year. If you are still in Florida, the Mayo Clinic has a branch in Jacksonville.

Keep going, think positive and you will live long and prosper. Best wishes for continued health.

1 like
Reply

I am seeing a dr and like you am not sure if he is the best. Right now my platlets have dropped to a normal level and I have been cut back on meds from 2 a day to 2 3 times a week and 1 5 times a week. My biggest issue is a burning in my arms which I attributed to aspirin because it started 2 days after I started and way before I started hydroxy. Of course drs tell me that aspirin is not causing. Getting very frustrated too coincidental.

Reply

I have started taking an antihistamine when the burning in my arms and legs gets too much to bear... and it works but I’m not sure why..

Reply

Who told u to do that and what is the burning from

Reply

Hi Again, I think the Dr I have is very good, but even he suggested getting a second opinion from a MPN specialist which I think I will do when the weather gets a little better, second opinion never hurts - I think.

Glad to hear that you platlets are back to a normal level, hope that continues forever.

I also get some burning in arms, hands, and feet and itching on back and sides, not sure if aspirin can cause that, I take two 81mg asa per day.

I was just in Cleveland for the international auto show, had a blizzard the night we were there. I lived in Cleveland for 3 years during the 70's. I always liked Cleveland just not up for the cold weather at this stage of life, enjoyed it back in the day.

Reply

Where did you live in Cleveland

Reply

One year in Euclid and 2 yrs in Parma

1 like
Reply

Hi. Get back to Florida! I have just read a piece on Patient Power on the enormous benefits of sunshine in managing fatigue and a sense of well being in cancer patients. You just have to sit there (well sunscreened and protected of course), you don’t have to do anything! And I thought it was just me who sought out the magic sunbeams. ☀️🙂. Bit of a mission in the UK! Given the British climate sunshine therapy is in short supply! 🙁.

Am sure once you feel more settled and accepting of your diagnosis and more confident in your haem team you will regain your verve and vivacity. And you have access to a wonderful natural resource. So take full advantage and enjoy it!

1 like
Reply

Hi Petsch, I live in Fort Myers FL now but used to live in WV and MD til the cold long winters got to be too much. I used to take my children to Seaworld and Geauga Lake in the summer.

Have you ever considered making Naples your permanent home and spending the summers in Ohio?

I was diagnosed with ET JAK2+ two years ago. I worked as a nurse in a busy clinic and just seemed to be extremely tired all of the time. My ears also became tender , red and swollen, and when I looked close with a magnifying mirror it looked like little tiny crystals or ground glass poking thru the skin.

I went to an urgent care center for a sinus infection and an Indian doctor there noticed my ears and said he thought it was gout. I had never heard of gout affecting the ears .

I then went to my family Dr.'s office and was seen by his PA. She noticed that my ears were sore but couldn't see the crystals with the naked eye and looked at me like I was nuts. Nonetheless, she ordered labwork due to my fatigue.

Results: Elevated Utric acid, Vitamin D deficiency, iron deficiency anemia, elevated platelets in the 900's. She referred me to FL Cancer Specialists who ordered more tests and determined I had ET. I presently take Hydroxyurea 500 mg daily, a baby aspirin, Allopurinol, Vitamin D supplement, and Hemocyte Plus ( an iron supplement). My platelets are almost normal now.

I used to be a workhorse, now I have days where I have a decent amount of energy and others when I could just stay on the couch all day.

I was quite depressed when this all began, but the human spirit is resilient and you will adjust to this "new you".

Your life is not over, far from it. Listen to your body. If you are tired, take a nap, and don't be apologetic about it. You're just recharging your batteries!

Petsch, I know it's all overwhelming right now. Eat well, exercise, take your meds, see your Dr. as scheduled, and make changes in your day as you need to.

Yes, you will have fun again!

Bonnie

3 likes
Reply

Hi Bonnie

Wow we r kind of neighbors. No I would never live in Florida for more then the three months. I love the change of seasons and a little snow then I’m ready to get out. Lol. I would miss my grandchildren too much anyway. This is perfect. I’m glad you are doing so well

I’m still in shock seeing that I was the healthiest person. Never even caught a cold. I always said go to the dr and they’ll find something wrong.

I’m live very close to what used to be sea world and Graig’s lake. Literally almost in my backyard. It’s a small world.

I think most of my problems are nerves.

Once I get past that I should be good. My numbers r comic doing down nicely and I am on hydroxy and iron. My iron is low and I will deal with that when I get home.

As my husband says eventually we all have to deal with something. I am 69

😢. I also have the jak gene thanks to my mom. I remembered her having a blood disease in her 90s. She lived to almost 101. No thanks.

1 like
Reply

Hi Petsch, you might want to do some research on the JAK 2 gene mutation, everything I've found says it is not an inherited mutation, but an acquired mutation. No one else in my immediate or extended family has/had ET.

I am more inclined to think that it is tied to something environmental or nutritional- too much exposure to processed meats, eating animals that have been injected with antibiotics and growth hormones, GMO foods, food preservatives, additives and dyes, chemicals we use to clean with in and around our homes, pesticides, lawn and garden products, fluoride, asbestos exposure, lead paint, too many X-rays during one's life, tap water that has been treated for impurities, living near a factory that has released chemicals into the air or water, or perhaps working at a job where you may have had exposure to certain carcinogens and not even knew it.

I believe most individuals encounter some or all of these things, but for some of us, after awhile of repeated exposure to any of these things, we acquire the gene mutation.

These are just my own thoughts as I continue to research all of this stuff.

Bonnie

Reply

Hi Petsch,

Your husband is a wise man, yes we will all have to deal with something at some point. Your mom lived to 101 so you have great genes, hope you make it to 102.

My understanding is that the jak2 gene is an acquired mutation and not inherited, hope you have a great pension cause you are gonna live a long time.

1 like
Reply

I don’t not want to live to 100 lol. O thank you

Reply

To both who live in Ohio, Dr Aaron Gerds is at the Cleveland Hospital and is an expert in MPN disease. And yes in Jacksonville Florida is the Mayo Clinic and I believe the expert there is Dr Riveria. But Doctor Gerds comes very well recommended! Good luck to you both!

Reply

You may also like...