I am from Srinagar J&K
I used to be an active B- blood donor
This year august I had to donate platelets for the first time and at the time of screening I gotta know that my platelet count is 771
That was an emergency case at around 11 pm and the doctors and the lab technicians they didn’t even had any idea about it.
They told me as your platelet count is too high u need to donate them…lol.
They took my platelets that time and I personally consulted a haematologist and after continuous testing and finally an MPN PANEL BLOOD test on 20 October the reports were positive.
MPL GENE MUTATION was positive
Now I have to go through a bone marrow biopsy most probably next week.
Currently I just talking aspirin 75mg as anticoagulant.
My platelet counts is around 700.
What made me surprised was the doctors at the most renowned hospital where they mostly treat cancer patients didn’t even understand the problem in the first place.
The haematologist directed me to make no blood donations.
I was a bit surprised to know about it as I have never been to a doctor since childhood
I am from Srinagar J&K
Hi @Arsenicencore a great big welcome to our forum, I am glad that you have found us.
Thanks for your story, what a shock for you having never been to a doctor since childhood. You must have felt very lonely and alone.
I felt in my own little bubble with the world going on around me.
You also highlight so well how little of doctors training time is spent on blood cancers.
I also had always been very healthy and had not had a day off sick from work in 30 years, before my diagnosis.
You have now entered an unknown system of waiting for tests, results and appointments, which always makes me anxious.
There is a lot of useful information on the Blood Cancer UK website but obviously in India sometimes things are approached differently.
Many of us have found that it has helped them to write a list of fears, thoughts, questions and practicalities to ask at appointments.
Thanks so much for previously being a blood donor.
Look after and be kind to yourself and please let us know how your bone marrow biopsy and other tests go.
Hello @Arsenicencore and welcome to this forum. So sorry to hear of your diagnosis. I have MPN. ET with JAK2 gene mutation. I was diagnosed at the begining of October. I take 75mg of aspirin, and the usual treatment also can be hydroxycarbamide which is a chemo, or Anagrelide which targets the platelets. Your haematologist will advise you which treatment is best for you. Also sometimes they will choose to watch and wait before starting these treatments. In the meantime try to stay positive and rest when you are able. Take care of yourself, and keep posting, as the support here is very helpful.
Hi @Arsenicencore . My Dr did start me on chemo, but I had a very bad reaction to it, so he took me off it. Others seem to manage on it for years without adverse effects, but I wasn’t that
Lucky. For someone newly diagnosed, it must seem worrying when you are only given aspirin, but they only start chemo as and when it is necessary. The aspirin is to help stop any unwanted blood clots, and I have a friend who has been on it for thirty years without any adverse effects.
Hi @Arsenicencore you are not on your own anymore, you are now part of our forum family.
I was diagnosed, with another blood cancer, 18 years ago, and I have been on watch and wait (active monitoring) ever since with regular full blood tests.
At diagnosis I thought my life was over, but my last birthday was my best ever, it was just as I wanted it to be.
Look after yourself and celebrate the number of blood donations you were able to give.
Hi @Arsenicencore. Sorry I meant a cold bath to soak in, not a shower. Try putting a few large spoonfuls of salt into a small amount of hot water, to melt the salt, then tip it into your cold bath. It won’t cure your itching, but it will give you some relief. I found that when I was on the chemo my skin stopped itching, so it might be worth mentioning that to your Dr. I hope you get some relief soon, as I know only too well how bad it can be.
Hi @Arsenicencore. Sorry I think I sent this info to you by mistake, but if it is of any use to you or anyone else who reads it, then it is not a bad mistake. Don’t give up on life. It is not a hereditary disease, but an acquired one, so you wouldn’t pass it on to any children. Also ET doesn’t necessarily shorten your lifespan. Oh dear, it does seem like you haven’t been given much info about it.
Hi @Arsenicencore I cannot agree with @Chris1 more.
Your diagnosis is not a hereditary disease and does not necessarily shorten your lifespan.
None of us in this world know what will happen to us in the future.
I cannot tell you what to do but if you might like to consider a relationship with someone in the future perhaps go with your heart.
It does sound that we are lucky with the information we have from Blood Cancer UK.
I will copy your post to their nurse advisors in case they can add anything @BloodCancerUK_Nurses
Please keep posting and look after yourself.
As many others have already so brilliantly welcomed you i too wanted to also say hello & welcome!
It sounds like you have received some really great support & advice already. As others have mentioned having an MPN can mean many different things for different people but often it is a condition which can be treated and closely monitored. Care and treatment may also be delivered slightly differently across countries but certainly you will be encouraged to focus on living a normal life as you were prior to being diagnosed.
You are always welcome to use our MPN pages as a point of information for what is best practice here in the UK and also talks through some practical aspects of what happens when you have just been diagnosed- What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
I hope your bone marrow test goes well and you are able to have confirmation of your condition and indeed further conversation with your health care team soon after.
It can unfortunately take a couple of weeks for a bone marrow result to be returned. But this may give you time to note down any specific questions you have for your consultant.
It seems like you are already firmly part of our community here at BCUK and please do continue to keep us updated but also reach out should you feel we can offer any support whatsoever.
Best Wishes, Lauran
My story is very similar to yours!
I am also blood group B- and give blood regularly as it’s a rarer blood group.
I signed up to a clinical trial…( doing my bit for the greater good of mankind). I received a phone call and letters saying my platelets were 733 and I need to see a haematologist.
I have however had many surgeries in my 41 years and 2 babies and not one Health care professional privately or NHS has picked up that my platelets have been over 450 since 2015!
My consultant who i see privately didn’t explain ET was a cancer, so I Googled and got the fright of my life.
I had a bone marrow biopsy last august and I can reassure you that it’s absolutely fine!
It’s more mentally challenging/ the fear than the procedure. I had the biopsy during covid times so no one with me and no one to be there when I got the results. I have Jak2, it took about 6-8 weeks to get the biopsy results. Felt like eternity!!
I now take my mum to all appts with me. I find it really helps as she’s a second pair of ears and also I can hold her hand for results and cry… That platelets have gone up, stayed same or that it just sucks! Then I move on and think I’m so lucky I know I have this condition now and I’m under professionals who will guide me through it!
My platelets are 750 at the mo, I’m due my 4 monthly review next week. I take aspirin 75mg daily. I’m fit healthy and run a lot + community physio. I have no symptoms
My advice is to feel the emotions, I felt very angry, why me! But I’m over that now and have made peace with it, it’s really sucks but there is nothing I can do! We will live as long as everyone, plus it will pick up on other things as we get older, so may live even longer
Never feel alone, the biopsy is fine, if I can get through it, so can you!!
Hi @Arsenicencore You are not the only one to go blank, I just have to walk into a medical building and my anxiety takes over.
That is why I have to write down all my questions beforehand.
I have learnt to be pleasantly assertive; an appointment is a two-way process and my time as well.
Perhaps just think of questions like ‘what are the pros and cons?’ ‘are there other options?’, ‘what about fertility issues?’, ‘what about fatigue?’ ‘what are the side effects?’, whatever you are concerned about.
As @GemmaG says if you have someone you can take with you it might help you and ensure you cover your questions and any other that might come up.
Give yourself time and be very kind to yourself
Hi @GemmaG. You are so lucky not to be getting any symptoms. I have ET with JAK2 gene mutation. I am also allergic to a lot of meds. They tried me on hydroxycarbamide, but had to stop it after two weeks. It caused my immune system to break down, and I was also allergic to the tablets they gave me to heal my skin. I saw haematologist this afternoon, and he is struggling now, as to how to help me. He wants to try Anagrelide when I have healed, but is loathe to introduce any new meds yet, just incase he starts off another allergic reaction. I suffer awful fatigue and itchy skin with the ET, so if you aren’t getting any symptoms, then long may that continue for you. I felt quite deflated after leaving the hospital, as I don’t seem to be getting anywhere with this. I am able to tolerate the aspirin, so that is one step in the right direction at least.
Dear Chris I’m so sorry to hear this. I really hope the MDT can get together to help. Wishing you all the best and speedy recovery.
Thank you @GemmaG . It is good to know that there are other people out there with the same diagnosis as me who understand how I feel. I have a good circle of friends, but none of them know what it is like living with blood cancer, so I can’t really talk to them about it.
Hi @Arsenicencore perhaps just give yourself time and be ever so kind to yourself.
Perhaps just try to carry on with your life, any hobbies you might have and I find music helps me and walking because I am very nosey and there is always something different to see. The Blood Cancer UK website has some relaxation and meditation techniques which might be helpful.
There is a saying ‘time is a great healer’.
Think I might know what hospital you are talking about. I am under a cancer hospital which is supposed to be the best but sadly to say has not been my experience so far. At times they seem unaware of some of the information and treatment out there. Even asked if the did a 10mg of one of the treatments they do and they said no and there is . Due to start treatment
Please let us know how you get on with your treatment @Sandra
Look after yourself
Hi @Sandra I just wondered if you have started treatment yet and how it is going.
Take care of yourself
Hope you are keeping well.
It was agreed I could put off treatment for now but have been given an appointment for six weeks time which is when it will start.
Have to choose which treatment to have , either Acalabrutinib or Venetoclax and Obinutuzumab . Head is in a bit of a spin and not sure which way to jump. Nurse is going to call me in four weeks for my decision. I was told Acalabrutinib could be taken for years but have read that it should not be taken for longer than 18 months as toxicity can build up.
Does the immune system build up after you have been taking medication for a while? I was told it does which surprised me .
No Covid protection so very worried and with all the confusion and different information anxiety levels very high . Sorry to put on you we all have a road to travel and I hope yours is being kind to you .
Thank you for caring your a wonderful lady.
Gosh, what a position to put you in.
@Sandra how can you make a really important decision about treatments that you do not feel you understand enough about???
Perhaps it might be worth ringing the Blood Cancer UK support line on 0808 2080 888 for a bit of help.
Please let us know what you decide and be kind to yourself