I was diagnosed last August with ET, MPL mutation and platelets between 700-800 range. It has been very hard for me to deal with because I have medical anxiety and always have. I basically tried to ignore it, but with blood tests every 3 months to remind me, that’s not a good long-term coping strategy. 😂 My symptoms are mild, but the worst part is I had to come off hormone replacement therapy cold turkey for the blood clot risk. So now I have horrible anxiety and depression that was under control with HRT, hot flashes, tingling fingers, heart palpitations and it’s hard to tell if it’s ET or menopause. I’m on an antidepressant which I hope is helping. It’s all so overwhelming and I really want to get to a place of acceptance. I’m so thankful to have found a group of people who understand. I don’t know anyone personally who has ever even heard of ET! So thank you for letting me join.
Neely Diagnosed: I was diagnosed last August with... - MPN Voice
Neely Diagnosed
Welcome to this forum. It can be very distressing when you are first diagnosed and especially if you already suffer anxiety. I am 80 years old and was diagnosed almost two years ago with Jak2 ET and started on hydroxycarbamide. I have also suffered from generalised anxiety for a few years and I can understand your worry. The tingling fingers and palpitations are probably from your anxiety.
Have you got an MPN specialist looking after your care? Is there someone you can talk to and ask the questions which are really bothering you? You will get to a place of acceptance. There are much worse things to have and we live very normal lives. I have other ailments under treatment and if I could get rid of one of them it would not be the ET.
Others will come on to speak to you. There are many here who have great knowledge and can set your mind at rest. I just saw your post before going to bed and wanted to send you some comfort. Wishing you peace.
Thank you so much! I truly appreciate your taking the time to send me words of comfort! I do have a hematologist/oncologist working on my case. I've only seen him twice so far, but I go again in April and I plan to ask him questions about all of my concerns. I tend to overthink and that is never good. My greatest fear right now is that I will not be able to tolerate the treatment. I seem to have a very sensitive system and medication often causes every possible side effect. But I am very happy to have this place to talk to others and hear their stories. Thank you again, and I would love to hear more of your experience.
Hello Jelbea - your note touched the heart ❤️ of all who read it - I’m sure - because we can all relate. I also read the replies so far and they reminded me, why I love this forum - and the the connection to these amazing people. Remind yourself- to breathe- to know that life is different, but it can still be amazing. Each of us has their own journey.. many with similar symptoms and challenges- some who share more unique experiences. Either way, the sharing here, the encouragement- it is life changing! I have so appreciated having a place to ask others with similar diagnosis- questions that I know they will understand.
It’s an adjustment for sure.. but it’s not a journey you have to go alone. This is truly a family .. I’m so thankful for!
Hi Jenn - I think you meant your reply to go to Plrc and not to me. I totally agree with all you say. It is a blessing to have this great site.
Thank you so much for replying.I have been crying my eyes out for two days and just feel so overwhelmed. So I am so so thankful to have found this place. ❤️
Welcome to the forum. Glad you found your way here. This is a club no one wanted to join but all are glad to be part of.
It can be hard to wrap your head around ET at first, finding out that you have a "blood cancer." A few things to know that help. Many of us look at this as cancer with a little "c" not cancer with a big "C". It really is a chronic condition that can be successfully managed. It is a truism that you are more likely to die with ET than from it. That is not to say there cannot be issues managing the ET. In reality, it is the secondary symptoms that can be more bothersome that the risk of thrombosis. You will have plenty of time to learn about ET and how to manage it.
I was diagnosed with ET 30 years ago. It progressed to PV 9 years ago. I never had a single major incident of thrombosis. I have lived a rich life and at age 67, continue to do so. There have been some challenges along the way, both MPN and non-MPN, but the challenges have been managed. I look at them as "interesting health learning opportunities." I have had opportunities to learn some very interesting things!
It can be very hard to sort out what is the ET and what is something else. Sometimes it is both. MPNs are at the core inflammatory disorders. Our bodies are integrated systems. One thing affects another. Sometimes in very complex ways. MPNs are very rare disorders. most doctors, inclduding hematologists, have little experience and know little about them. You have the MPL mutation, the most rare of the three driver mutations. That is why it is so important to consult with a MPN Specialist rather than only a regular hematologist. This is the only way to ensure optimal MPN care. Here are two lists.
pvreporter.com/mpn-speciali...
Please know that you have this. Have confidence that you can find a way to succesfully manage the ET.
what I can tell you is that when they discovered my disease, I spoke with another patient who had been coming regularly to the doctor for 9 years: I said in my mind "9 years I either get better or I die" here it is that 15 years have passed and every 3 months I do 300km round trip and I haven't died yet, I'm used to it. In any case, do your best to give up antidepressants, the more time passes, the harder it is. Keep calm and let's hear it. Catalin
I can relate to a lot of the menopause symptoms ,anxiety depression etc which I suffered from in my 50s I wasn't on hrt for long because I got terribly depressed on the progesterone phase. I still had all the flashes sweats etc and was prescribed venlafaxine off label by the consultant. Apparently it had a side affect on temperature control. I found them quite good. However they are a bu**er to stop
hello Plrc, welcome to our forum. It can be very daunting and scary when you are diagnosed with a MPN, I would recommend that you read the information on our website mpnvoice.org.uk and I am sure it will help you.
With regards to your HRT, we recently held a webinar about the Menopause, HRT and MPNs, I am sure it will help you to have a look at it, you can view the video of the webinar on our YouTube channel youtube.com/channel/UC-S_Ic....
As you can see from the replies from the lovely people on this forum, we all completely understand how you are feeling, you are not alone, we are here to help and support you.
It might also help you to have a buddy to talk to, a buddy is someone who has the same MPN as you and takes the same medication, and can offer support and advice on a one-to-one basis, contact is by email or phone, or a combination of both. If you feel you would like to have a buddy then please email me at buddies@mpnvoice.org.uk.
with best wishes, Maz
first of all it’s normal to be anxious when diagnosed even if you don’t already suffer from anxiety, initially it can dominate your life but after a while it just can become part of your life.
I note you came off HRT which of course is likely to make you feel worse, I recommend you watch the video on the menopause and HRT that Maz posted. It is an excellent summary about HRT and more importantly HRT+MPN. I have been on TRT since 17 years ; 13 with PV , and study TRT and HRT intensely and seen many experts, and can say the video shown here is excellent, Deborah the speaker really knows what she is talking about, there is a lot of misinformation out there re HRT , it’s really impressive to see it done properly in this video. It has to be a decision for your docs and you but maybe you could show them this video and possibly you can go back on HRT which should help with anxiety if done properly.
Wishing you good luck, hang in there you will get used to it all with time
I’m afraid I took years to find a way of coping and I believe I get a little anxious at times because of my inability to be able to whizz around. You will eventually find your way, accept you might not be able to cope like you used to. Try and think that your illness could be a lot worse. It works for me. I am now on Peg. I’m not sure if you will be able to go back on HRT might be worth asking.
Wishing you well, take care
So glad you found this site. It was tremendously helpful to me when I was diagnosed. It is a great place to come to for the patients perspective on ET and other MPN's. One thing you'll find is that there is huge variations in people's physical responses with ET. Tough we all have the same disease, we all have different journeys with it.
Sometimes we have answers, sometimes we can only be a shoulder to cry on. As with all problems, you might find that you want to talk about having ET long after your friends and relatives are done listening. In that regard, I found it very helpful to come on and just read other people's responses to remind myself that I am not alone, even though I seldom bring much to the table myself.
If you feel that anxiety is causing you great harm, see if you can find a place that can instruct you in meditation. It doesn't solve the physical issues, but being able to find that quiet spot deep in your mind and rest there for a while helps. Even an app could help if there was no place near by.
Hi,
Welcome to this forum where everyone will do their very best to help you in any way they can.
Anxiety of any sort can be very hard to deal with. In the very least, you have done well to identify that you suffer with it.
I don’t have any specific answers for you but can confirm, from personal experience, that a course of counselling proved positive for me - allowing me to develop some effective coping mechanisms.
All the best
Mark
Not what you're looking for?
You may also like...
Not diagnosed, but suspected
Newly diagnosed with ET
Recently diagnosed..
Recently diagnosed with ET
Recently diagnosed with ET (CALR+)
Newly diagnosed and scared
Recently diagnosed ET
Prior To Being Diagnosed With ET.
Newly diagnosed with ET
Newly diagnosed with ET.
