Been A while

[Smudger0122]

Afternoon all,Been a long time since using this forum.

I had a Meningioma tumour and Essential thrombycythemia Cal r diagnosed in 2021.

Craniotomy of 2021 affected my left eye, which in February this year had squint surgery to my eye.

This levelled it out with right eye.

Still on hydroxycarbamide, clopidrigel and omezaprazole.

Platelets last count 517, up a tad since 4 months previous.

Just nowdays battling with tiredness, most day just early evening.

Feeling stressed and anxious, a lot caused by most worries.

Finding still difficult to slow down and adjust to new way of life.

Just wondered how others on here, whom I chatted to year or so ago are doing with ET are getting on.

Hoping being back out on forum, chatting may help.

Thanks

Smudger

[Hbm1]

Just a thought, have you had your B12 levels checked. Both HU and Omezaprazole will affect the body’s ability to absorb this vitamin from food. I know because it happened to me. (I’m on hydroxy and Lansoprazole) . My B12 blood tests showed ‘normal’ but at the low end of the range and this is apparently a grey area . When I asked my GP he agreed to give me a B12 jab. This was four weeks ago and it changed my life, and very quickly too. The awful tiredness and fatigue have disappeared as has the anxiety and mental problems I had. It’s worth checking out, and let us know.

[Smudger0122 in reply to Hbm1]

Morning Hbm1When my bloods are checked quarterly, I presume the haematologists keep an eye on this?

Perhaps will ask.

Thanks for replying

Smudger

[Hbm1 in reply to Smudger0122]

I wouldn’t presume this. In my case the Haematology Department ask for a full blood count or CBC. This does not include a Vitamin B12 test. My deficiency was missed by 3 GPs, 2 haematologists and a Neurologist. Also, my GP didn’t know that two of my medications block B12 absorption. I feel I’ve done a lot of work myself but it’s been so worthwhile.

[Smudger0122 in reply to Hbm1]

Perhaps B12 in tablet format could be a daily option for me.

[Hbm1]

Actually no, If you have absorption problems (as I do) then pills are useless. A B12 jab is the best thing and I'm now going to have one every two or three months (painless!) or there are B12 high dosage drops you can buy (Amazon do them) which are sublingual meaning you place a few drops under your tongue where they get into the blood stream more effectively than tablets. It's definitely worth a try but my first step would be to ask GP for a B12 blood test and if the result is below 300 you probably need B12. A test result under 300 will still show on the results as 'normal' but this is misleading when you're on those medications.

[Bridie123]

Hi there, I'm ET calr, did seven years on hydroxy and every one was misery! Now on peginterferon and things are a bit better. I see someone at the cancer centre about fatigue and ofcourse everyone is different ,but in a nutshell , it might be time for you to reevaluate your life how you live it... I know you are not old but living with a chronic condition takes its toll and the drugs do aswell! So trying to get everything done like you have always have, may not be the way now. Spread things out, pace yourself more and don't try to do things at a hundred miles an hour! Being more mindful about what you do, even eating, slows you down and is more restful. Above all remember, blood is in every part of your body and some days that blood is more challenging than others. Keep smiling.

Ps. My GP won't let me take omaprazole with clopidogral.

[Smudger0122 in reply to Bridie123]

That's very kind of you.Does seem slowing down at 48, a bit of a let down.

Not the person I imagined I would be.

Regarding hydroxycarbamide, will discuss this in January with my consultant.

I've read the side effects of other meds to control ET could be dark.

Which seeing I struggle with my thoughts, may not be the best route yet.

Thanks

[Bridie123 in reply to Smudger0122]

That's why I stayed on it for seven years, fear of the other other was too great! The haematologist listened to me though and introduced me on a low dose, which initially for a few weeks gave me stomach cramps and diarrhea, but that stopped and I have been on it for a year with no depression and it is controlling my platelets.

[Wendrew]

smudger, it’s difficult to come to terms with our illnesses….especially at such a young age. While I have PV not ET, I did just get diagnosed with a menigioma as well. So I’m interested to know the details of your craniotomy journey. I can share the PV side with you but I’ve only been diagnosed less than a year ago. I have found that eating healthfully, and giving myself permission to rest has been helpful. Supplements and monitoring blood pressure have been important for me.

[Smudger0122 in reply to Wendrew]

Hi wendrew,Happy for you to ask any questions directly/privately.

Smudger

[Wendrew in reply to Smudger0122]

so I’m wondering how did they find it. Where was it, are there stages like with other cancers, what was the surgery like,why did they go in, what were the side effects and where are you now in your recovery. I think that’s it for now. My first neurosurgeon visit is next week and I want to be ready. Thanks for your response.

[hunter5582]

Glad to hear from you again. I have been there and done that and have the t-shirt from a MPN + brain surgery. I would gladly have missed that particular t-shirt! I am actually quite fortunate that the aftereffects of the resection of the brain tumor have been relatively mild. They have also improved with time.

I am doing well overall with managing the PV with Besremi. It has worked way better for me than the hydroxyurea and the venesections. My quality of life is better now than before starting on the interferons.

Stress-anxiety-worry is not good for the health or mind. Hope you can find effective way to manage it. managing the PV + NF1 + arrythmia + other conditions and general life stressors has added up at times. I did not always handle it well and paid the price. for that. I developed a set of coping strategies that have made a big difference.

1. Support from my family, friends, and faith community.

2. This and the other forums I participate in (my friends and MPN and NF Families)

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.

Wishing you all the best.

[Smudger0122 in reply to hunter5582]

Nice to hear from you Hunter5582It's the ups and downs of anxiety, that's rough.

Will look at Qigong.

Keep safe and thanks

[hunter5582]

Qigong has many different forms. Tai Chi is one of them. Here are a couple of the forms I find helpful.

youtube.com/watch?v=asJzU2K...(Not working as expected?)

youtube.com/watch?v=_yMHHhx...(Not working as expected?)