Feeling very nervous about writing this as never done anything like this before .
I am 45 and was diagnosed with ET last June struggling to comes to terms with it .
At the moment I am on aspirin . I visited my hematologist last week and my bloods were 1200 told they need to reach 1500 before I start medication they have mentioned interferon . My next appointment is in 10 weeks . Only symptom l have is fatigue but feel worried all the time about the future living with ET . Love going on holiday but worry about flying are short haul flights ok ?
Thanks so much for listening x
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Maxid
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Maxid, my daughter ( age 39) was diagnosed in June with ET. Her platelets are so high that she also has Von Willebrand so she cannot take aspirin . She started on Hydrea and it was slowly reducing the platelets. Her doctor changed her medication to interferon due to her age and the long term use. Platelets are over a million again.... doubled the interferon and added Hydrea every other day. Her only symptoms were fatigue. Flying has not been an issue for her- Cuba, and Atlanta to Calif. She has not flown with the interferon but I believe it is not a problem. She will get a ‘note’ from her dr. She was told to live her life and keep moving. I think every situation is different. She has more energy on interferon even with high platelets. This is a great site to connect with others. I have a friend that was diagnosed at age 40. She is a very active 75 year old. The best of luck to you.
Hi Maxid - I have ET and take hydroxy and am currently in Mexico having just flown 5 hours from my home for this vacation. Last year I flew short and long flights for vacation with no problems at all. Make sure to drink a lot (1 to 2 litres per day) all the time - flying or not - andcskso stay well-hydrated on this plane. You’ll be fine. I sure understand your anxiety and we’ve all felt/feel it but we live our normal lives - and the vast majority do so long after diagnosis (as Greta’s note here indicates). You’ve come to the right place for information and support for sure.
Dear Maxid. I live in Australia and was diagnosed with ET & jak 2 + four years ago. Have taken aspirin the whole time and took Hydrea for two years and last October transitioned to Pegasys ( pegolated interferon). Pegasys has been brilliant with platelets down to 294 and red blood cells returning to normal after being hammered by Hydrea for two years. Like Greta noted below - flying is fine ( short and long haul) and you will get used to keeping yourself hydrated (I still struggle with this I must admit). Re the fatigue, a kind soul here pointed me in the direction of chelated magnesium (Drs Best) and it certainly helps me with the fatigue. This is a lovely community of kindred spirits, who are more than willing to provide help and guidance.
Hi Kinsale, i just started today on Hydroxy as 10 of only Aspirin. You describe it as being hammered. Do you mean Hydroxy felt harsher on your body? Also have you noticed any mood difference on Pegasy?
Hi Bloodzero. I took Hydrea for two years and whilst it stabilised my platelets count, over time it was affecting red blood cell measures. These are measured and reported on with each blood test and your haemo should monitor and discuss them with you (as well as discussing your platelets). Hydrea in reality wasn’t a good fit for me and I was inching towards transition to PV (as shown in the above blood test results). It was great that Pegasys became available in October last year. Pegasys isn’t without its side effects (hair loss is one that I am monitoring), but it is a really good fit for me re my ET. Re moods on Peg, my haemo did discuss that with me but to be honest I had a very smooth transition with no mood effects at all.
I'm also 45 with ET. Have been on aspirin for about 8 years. My platelet use the average around 1200 to 1400. During this time I've taken over 20 flights.
The things that help me is to drink plenty of water before and during the flight. On the flight do not drink coffee wine or any alcohol. On the flight get up to walk around to stretch regularly do exercises with feet and legs to keep blood circulated. And once reach destination try to go for a 30 to 40 minute walk to get blood flowing.
Don't let fear of the future stop you from living in the present.
I have been on Peg since Sept 2017. It's been great in so much as my counts are really down and for me the side effects are minimal. I was diagnosed with ET in May 2017 and was flying to the USA from the UK in the summer. My consultant said that would be fine so I travelled with no issues. The one thing you should do is phone your travel insurance company and let them know. You may have to supplement your insurance to cover the condition. Good luck with the treatment and have a lovely holiday.
HI Maxid, welcome to our forum, please don't feel nervous, we all understand how you are feeling, we've all been there, so you are amongst friends, we are here to help and support you. It is very frightening when you are diagnosed and it does take a while to understand it all and the impact it will have, and is having, on your daily life.
I would urge you to read as much as you can on our website mpnvoice.org.uk and look at the videos we have on there of consultants and patients talking about MPNs and how they cope, there are also some great stories from patients. Once you start to learn more about it the better you will feel.
Try not to worry too much, easy to say I know, but people with ET have an excellent chance of living a near-normal life span, and there are a lot of people around the world who have had ET for many years and are still going strong, I myself was diagnosed in 2003 when I was 44 and I am still enjoying life. With regards to flying, you will see from the comments from the lovely people on this forum, it is ok to fly as long as you take precautions, and check with your haematologist before any long haul flights, just to make sure your blood counts are ok and to see if you need to make any changes to your medication. Stay in touch with us all. Best wishes, Maz
Just a message to say, I agree with all the previous comments and we are here for each other, I don't know what I would have done without the support of the lovely people on here. I would also urge you to try and lead a normal life, get as fit as you are able, do the things you used to do, ration your energy for the more important stuff, like holidays! Sometimes we just have a fear of fear, rather than illness if you remove that, this illness doesn't seem so bad. We all have a "melt down" occasionally, just vent it out on here, I do & usually feel better knowing I'm among people who I know understand how I feel. The folks on here have quite a lot of clinical knowledge, that's not to say, its a substitute for your health care provider, but I find it helps to know what questions to ask when you see your doctor or haematologist. All the best - Raphael
Hi, welcome, I’ve done lots of long haul since diagnosed with ET. It’s still worth checking with your haemo. My platelets have never been as high as your. As for coming to terms with your illness. After 3 years I’m still fighting the demons. Especially when my platelets are up.
Just want to say a massive thank you for your messages . Definitely won’t be shy to post again . It’s really comforting to know others are on this crazy path too !! Xx
I was diagnosed a year and a half ago. ET CALR Mutation. Have had ET for 8 years. My third and biggest TIA brought me to the hospital, where the diagnosis was made. I was at 823! I’ve had another TIA at 756. Every person is different. I use mostly Gingko and very little aspirin. I was immediately put on Anagrelid. This caused heavy heart beat, but not when I take the pills spread throughout the day. It disrupts your collagen over time. Some wrinkles. From the illness, I had fatigue, dizziness, neurological problems, major brain fog, low pressure glaucoma, etc. All that is almost completely gone. Glaucoma will not get worse. Interferon does a job on your immune system. I have Hashimoto Thyreoiditis, therefore, Interferon is a No-no. Since I was under 70, (Was 52) my doctors said no to Hydroxyurea. Increases chances of a secondary cancer considerably! A friend who has ET is taking Hydroxyurea at 55 and got skin cancer in the summer. Every person is different. Important is to clean up the food that you eat. I stopped all sugar, milk products and grains except for rice. No packaged foods. Almost All organic. Exercise, but not too strong. That will increase the problem. Keep body balanced. Sleep well! I am really a new person. I have gotten rid of almost all inflammation in my body. I’ve gone from 6 capsules to 3 per day. Careful with detox. It can take your meds out of your body if not taken at the right time. That increased my thrombocytes. It must be done as gently as possible. All the meds do a job on your liver. Support it gently. It’s important to really listen to your body for signals. There’s a lot you can do! Look at alternative medicine to accompany your conventional treatment. Start learning, but don’t overload yourself with info! That’ll stress you. 1.2 million thrombos is higher than me. Depends again on each person’s constitution and sensitivities. We are all individuals. Good luck and enjoy getting to know yourself. Details are important. Always look ahead!
Hi Anag, regarding your remarks saying hydroxyurea 'considerably' causes a risk of secondary cancers. Their is a small chance using this drug could increase your chances of going on to accuire a secondary cancer but the percentage is small and the benefits and the risks of the drug have to be taken into account before being prescribed. Also their is side effects and risks with all drugs we take,even over the counter ones we purchase. We must be careful when using terms like 'considerable'when so many of us on here take hydroxyurea including me but more importantly people just starting out on this drug. Atb,tina.🤗
I understand your point. It is necessary to weigh every word we use, especially for those of us who are newly diagnosed and very vulnerable, as I also was at first. Thanks for pointing that out!
Hi Anag,thanks for replying, when i read your reply i was a tad concerned because i remembered how i felt when told i had to take a chemo drug, the et diaganosis didn't have the most effect on me,it was being told to take the drug itself. I just could not bring myself to take them straight away and it took me a day or 2 to get the courage to take them. I did a lot of research into the drug but was still terrified, i think if i had been newly diagnosed and read the post i would have been more likely than not to take them. I have been diagnosed 11 years and all of the research papers i've read state their is only a small percentage of people who go on to develope secondary cancers later on,the same applies to mpn's progressing into aml. Atb, tina.🤗
Wow! I can imagine how you felt, Tico. I had that feeling when my husband of two months got attached to his first chemo IV during 911. I guess I was kind of experienced, when it was my turn! I swallowed my med as soon as I got it, right at the pharmacy counter! I was terrified, since my diagnosis was 2 days after my stroke and my daughter was 13! Thereafter came the terror, fear, mood swings, numbness. Since educating myself and being on this amazing diet, I am so much stronger, both physically and mentally and I’m more dedicated to living happy and leading a natural lifestyle. Thank you for sharing this very important point. Good night.
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