I saw my haematologist on Tuesday, and my platelets have gone down by 97. That is a large drop, as three months ago it had risen by 59. It is now 562, which is 32 lower than when I was diagnosed a year ago. My haematologist never seems to have any answers to my questions, so I am wondering if this is classic behaviour of Essential thrombocythemia (ET), or if these large swings in the platelets is unusual. I know that they do go up and down, but this seems rather a lot.
Hi @Chris1 thanks so much for posting do you have a specialist nurse, GP or go back to your haematologist that you might ask your questions to and perhaps be pleasantly assertive and ask them to explain further if you are not satisfied?
Perhaps if you write down the dates and readings clearly it show it up better.
My platelets certainly do fluctuate.
Please do let us know how you get on and look after yourself as you are obviously concerned.
Hi @Erica . In answer to your questions, it is no, no, and no. I am always pleasantly assertive with my Haematologist and I always get the same response. He never has answers to any of my questions. I sometimes wonder if he has any knowledge at all regarding blood cancer. I am not so much concerned as curious, as there is very little information about my type of blood cancer. I find Myeloproliferative neoplasms (MPN) voice quite informative, but even that doesn’t address all the questions that I would like answers to. I always keep a chart of my blood levels, symptoms and dates, and have done so right from the start. This is very useful to refer back to. I know that you have a different blood cancer to mine, so I was hoping for a response from someone with more knowledge of Essential thrombocythemia (ET). Maybe someone who has had it for a lot longer than me who would know the pattern that it takes. Thanks for your reply. I do hope that you are keeping well. Take care. Chris.
Hi @Chris1 you might ask for a second opinion on the NHS.
Yes, I hope someone with Essential thrombocythemia (ET) will share their experiences with you.
Please do let us know how you get on, take lots of care and be very kind to yourself.
I will also copy your post to the Blood Cancer nurses @BloodCancerUK_Nurses
Hi @Erica . That is not a good idea where I live. A year ago when I had a bad reaction to the chemo and ended up with all sorts of problems. My haematologist only dealt with one of the problems, so when I got help and several diagnoses from a GP, and treatment from him, the haematologist didn’t like it and got really nasty. I live on an island and we only have one hospital, so to change or upset my haematologist is not a good idea. The cost of ferries to the mainland is extremely expensive, so out of the question.
Good evening @Chris1, and everyone else, I hope you are as well as you can be.
I am a 58 year old male and I was diagnosed with Essential thrombocythemia (ET) a little over 5 & 1/2 years ago and have been on Pegasys injections since April 2018, varying in dosage from 45mcg per week at the start of this journey, through 60mcg every 4 weeks before settling down to 90mcg every 3 weeks for the last few years.
During this time my platelet count has been all over the place, starting at 1200+ on diagnosis and now down to the high 400’s but has had the characteristics of the Crest Run at times! I can “sense” when they are high as I feel even more tired than usual and also bruise more easily and painfully, and the bruises take longer to fade too. It is what it is sadly.
I too struggle to get answers out of the consultants, especially when I have telephone consultations, and I do try to have “in person” appointments where possible, although my last appointment was changed from in person to phone two days before it was due to take place, without any explanation given. Again, it is what it is.
Take care and stay safe, and remember to be kind to yourself.
Hello @Jimbo165 . Thanks for your reply. It is good to get as much information as I can, as I was only diagnosed a year ago, and the pattern of the disease doesn’t seem to be documented anywhere, other than the experiences of other sufferers. I have face to face appointments at present, but they did try to fob me off with phone consultations, but I refused them because I suffer from bad tinnitus and find listening on the phone difficult. So far they are allowing me to continue with the face to face, and I see my haematologist about every two months. I hope you are managing to remain stable with your treatment. Take care of yourself.
I hope you’re doing okay today? I appreciate your difficulty in understanding your platelet pattern and it’s great you are reaching out to learn more from others experiences.
As you have recognised, this really is very unique from person to person and there can be no such thing as a steady pattern for some.
Keeping your own diary of blood results can certainly be helpful as it’ll allow you to notice any trends but also question if you see a dramatic change. This of course is not only your responsibility & should your team feel concerned about any changes to your levels, this will be discussed with you.
Always know that if if you ever need to talk anything through- we are also very much here for you too- 0808 2080 888.
Best Wishes, Lauran
Thank you @LauranBloodCancerUK . I do appreciate your reply. As I said in my post, I am not keen on telephone calls if they can be avoided, due to severe tinnitus due to a neurological problem, but it is good that this option is there for those that need it. It does seem that Essential thrombocythemia (ET) is a most unpredictable type of blood cancer and it is always helpful to have information from other sufferers. It must be a scientist’s nightmare trying to get to the root of what triggers the changes in the platelet count, and the cause of the genetic mutations. It is obvious that a lot more research needs to be done, but the breakthroughs probably won’t be in my lifetime. I hope you are having a good day. Best wishes from Chris.
I was diagnosed in March this year with Essential thrombocythemia (ET) and although initially after I started treatment in May my platelets dropped they are now up and down like a yoyo!!
My consultant doubled my dose at weekends and they are still playing up, I only get offered telephone appointments and I really have no idea what ‘experience’ is normal or expected, whenever I phone for my results I just feel like everything is brushed aside, so I understand your frustrations !!
Hello @KT1609 Kathy. That is why this forum is so important for us all. To be able to share our experiences helps us all to understand a bit more about this new journey that we find ourselves on. Medical support across the nation seems to vary drastically, so having a go to place at our fingertips is so helpful. I was diagnosed a year ago, and at the beginning this forum was the only place that I got the support I needed when I was trying to find out more about what was wrong with me. My hospital consultant was not very informative and still isn’t. The CNS that I was supposed to have was non existent and never bothered to make contact. It is just the consultant that I have any contact with, and I get more help from his secretary than from any nurse that is supposed to be supporting me, but never does. Good luck with your treatment. I hope it suits you and that your platelets settle down. It’s a bit of a mystery tour isn’t it!! I would suggest that you write any questions down and be pleasantly assertive when you have your phone consultations. It is much easier for your nurse/Dr to brush you aside during a phone consultation, so have your questions ready and don’t let them dominate the consultation, take control and keep asking those questions. If they don’t answer them effectively, then ask the same questions the next time you speak to them. Keep a record of each and every question asked and the date of the consultation that you asked it. Keep records of any other information, such as blood levels,eg: platelets count, red cell count and white cell count, also what medication you are on and the dose. This will help you build an overall picture of the progress of the disease over the coming months and years. I hope this helps you navigate your way through it. Take care and thanks for your reply. Best wishes from Chris.