Newly diagnosed with ET - CALR type 1 mutation. Found elevated platelets (~600) in routine blood work for an annual physical. No other symptoms presenting. Feel like a normal and healthy 38 year old guy, but anxious about life going forward. Had a bmb to confirm - no surprises there.
Hem/onc seems positive and encouraging. Going to get blood checked every 3 months until something changes! Baby aspirin daily.
Wanted to post because of all the encouraging things I’ve read here. Hang in there and God bless.
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dbus1417
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Hello and welcome to the forum. This is a great place to get information and support.
I was diagnosed with ET when I was in my 30s. It progressed to PV about 8 years ago. At age 66 I am still doing well and living a high-quality life. I have never had a thrombotic event in the 30 years with a MPN. I have had issues with systemic inflammation related to the deregulation of the JAK-STAT pathway. I have also find ways to manage this effectively.
It sounds like you have a good attitude about managing the ET. Your plan makes perfectly good sense and you will likely find life will go on as it has before. If something does change, then you can figure out a new plan.
I was a wreck at first. When you receive a diagnosis for a life long chronic condition it can really shake your sense of security. My biggest thing I am focused on now is my diet and increasing exercise to keep other chronic conditions from taking root.
I have faith in God that will see me through this challenge and give me the strength to maintain for my wife and children.
I appreciate your story and I believe it was one of the ones who inspired me to join here when I was doing my initial research and deep dive into mpns.
There seems to be a lot of really interesting research and break throughs in the mpn field.
There is a lot happening in the MPN world. Our treatment options really are improving. You are right on target with paying attention to diet and exercise. The Mediterranean diet is what has the most support at this point. Regarding diet, I would add avoiding toxins in the food stream: carcinogens, antibiotics, pesticides, hormones, xenoestrogens, BPAs, etc. We can ill afford adding to our risks of other cancers and health issues.
In the last several years, in addition to the progression of my MPN, I have dealt with four surgeries, including heart surgery for an arrhythmia and brain surgery to remove a tumor. When I first started having more serious health issues about 8 years ago I did not deal well with it. I let the stress build and tried to just stuff it. That did not turn out well at all. Since then I have found a list of coping strategies that work for me.
1. Support from my family, friends, and faith community.
2. This forum (my friends and MPN Family)
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Surround yourself with things that are positive and lift you up.
5. Mindfulness practices - I practice Qigong.
6. Say the Serenity Prayer every day and take it to heart!
7. Educate yourself about your condition(s). Knowledge is power.
8. Create a high-quality treatment team who you trust.
9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.
I have been blessed to have a relatively indolent form of a MPN. I have lead a long rich life and plan to continue to do so despite what happens with the MPN. Sure - there have been some challenges with the ET-PV and the other related and unrelated medical issues I face. Sometimes you do, as the military folks say, have to "Embrace the Suck" or just "Suck It Up Buttercup." However - it is not all "Suck." There is plenty of good in life to enjoy and embrace. As the prayer says, I seek the serenity to accept what I cannot change, courage to change what I can, and wisdom to know the difference.
Hi Hunter,the qigong practice sounds interesting to me. I saw youtube videos with sample routines. Do you recommend any books, videos, classes etc to get something like that going?
There is a lot to the practice of Qigong. The best way to learn is from a knowledgeable Sifu (teacher). There are some good books that can get you started.
Interesting your Dr got curious at 600. I had 650 in 2016, not till last year at 1000+ and high WBC did my Dr get interested. I have a new Dr these days.
My blood was textbook normal with the exception of my platelets.
We did two consecutive follow up bloods and on the second one I was referred to a hem/onc who tested me for jak2/calr. Jak2 was neg but CALR was detected. BMB was normal with the exception of increased megakaryocytes which was expected.
My wbc does fluctuate between 8-13k but based on all my history I’ve always been on the higher side.
I've noted elsewhere, it's best to get NGS (NextGen Gene Sequencing) for a more complete list of any other non-driver mutations you might have. Even if it's not useful right now, with ongoing advances, this info from near the time of diagnosis is eventually likely to have value for prognosis and esp future treatment decisions.
My first post as well. Your story was so deja vu that I wanted to say “me too” in reply. Like you, I was recently diagnosed with ET and CALR, although I am type 1 like (34 BP del).. Had no symptoms at all and it was also discovered through a regular physical, although my platelet count was 1,100. I do have 23 years on you, but still understand what you are saying about having the diagnosis shake you up. Amazing how fast one becomes aware of and focused upon living an anti-inflammatory lifestyle. Best of luck and long, happy life!
Hi like you my platelet count was in the 600’s. I fainted, which was unusual for me, so went to the doc, and discovered high platelet count. I was referred to a haematologist where I was diagnosed with ET Jak 2 I was put on aspirin, one a day I stayed on this for 8 years but the platelet count didn’t settle, I was reviewed every 3/6 months. during this time I felt fit and got on with life. it had increased to 1300 before I was put onto hydroxycarbamide 500mg per day, to start with. I have been taking hydroxy for 3 years. This did lower the count but haematologist would like it lower so I am now on 1000 mg for 5 day (mon- fri) and 500 mg sat sun. I am reviewed every 12 weeks. I am 62 and from Northern Ireland I have just joined this site and have found it great to read others stories and experiences. Thanks for sharing. Roxy1959
Hi I attend the ulster hospital and was with Dr G Hamilton until 2 yrs ago who I found very good he is now in the city. I am now with dr sharma I have only had telephone consultations, but have found him to be very good at explaining and dealing with any concerns I may have about the ET My red and white counts are all good, just to get platelet count down a little more.
Lucky you. I am also at the Ulster but my consultant is very dismissive of mpn so is my GP. Luckily a registrar who I mostly talk to is taking more interest and will find things out for me as I am also a transplantee which doesn't help matters lol. Thanks for getting back to me. Really appreciate it 😁
Welcome to this forum which is the best and greatest place to come for help and encouragement. So glad you have found it and to hear that despite platelet rise you are fit and well. Long may it continue. It can be an anxious time but your faith indeed will help you through.
I have been managed in that exact way for 16 years. Remember to take your aspirin and make sure you choose an enteric coated baby aspirin. It will be kinder to your stomach, as you will most likely be on your aspirin for many years to come.
Glad you don't have symptoms. I have had ET now for over 10 years CALR insertion type (don't remember if it's 1 or 2). I have been going about life as I did before the diagnosis. Every 3 months a blood check and hydroxyurea every day. All is great! I had no idea anything was going on until a routine blood check pointed out elevated platelets.
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