HI Maureen, Hope that you are doing ok and have plenty of tablets to keep you going. I had two little triumphs this week. Finally managed to get a letter from GP and had my 4th jab and then I managed to get a priority PCR test. I live in a holiday area and we have had an influx of visitors, but not many wear masks - makes me feel uncomfortable. Keep safe over this weekend !
3 Likes
Hi Kate itâs lovely to hear from you.
Still ok for tablets 
thankyou.
That really is good news. Nothing for me about the 4th jab.
I live in London and l still wear a mask in supermarkets and if l get a bus or the tube. I just think itâs still a good idea and if l can l will.
My nephew has Covid at the moment (only has a sore throat) so itâs still around.
I hope the storms donât affect you too much, weâve secured everything in the garden but not sure how the fences will hold up.
Take care xx
2 Likes
Hope that the storm is not too bad. I live in the north of England and we took a real battering in storm Arwen. I lost two fence panels and the bins blew all over. I was lucky and only lost electricity for a while. Several of my friends were off for days. I went to bed with my torch last night, but so all is quiet but itâs raining. I have being doing the ONS survey since the pandemic began and have just received the results from my last test and am pleased that I still have antibodies from my booster last October. Stay at home and keep safe xx
2 Likes
HI Maureen, Just had my appointment with the haematologist - platelets up again, so back onto 4 hydroxycarbamide a week. I know that itâs still a small dose, but itâs a roller-coaster. I tried to get back to normal in the last two weeks, but have found out now, that I will never be like I was before. I was so very tired - even dropped off for a moment talking to my daughter on the phone .Both my daughters were due to come up to go with me to my appointment, but they and their husbands all got covid. They are all fully vaccinated and havenât been too bad⌠Looking forward to spring and pottering in the garden. All the suffering in Ukraine makes our troubles seem very minor. Let me know how you get on when you have your appointment. Best wishes Kate
1 Like
Never apologise for thinking about your own worries, itâs in these circumstances that youâre allowed to be a little selfish. Yes whatâs happening in Ukraine is terrible. I follow it very closely as Iâve got lots of family in Western Ukraine who are all terrified and some have joined the defence force but Iâm still able to keep in touch with them and offer my support for now.
2 Likes
Hi Kate l am so sorry to hear your platelets have gone up and no matter what dose of Hydroxycarbamide any of us are on itâs still a chemo drug which is huge.
I get how you are feeling and l am here for you.
I too have recently realised that lâm not over my diagnosis and am struggling at the moment. Family are great but knowing there are people out there with the same feelings as me has become really important to me. I feel l am no longer alone.
I work in a secondary school in inner London and we have both Ukrainian and Russians students itâs so hard knowing what to say. Especially as they all have family back home.
Still 4 weeks till my appointment but lâm thinking l might ring my next week consultant and see will he explain why the platelets have gone up.
Keep strong and l am here if you need to talk x
2 Likes
Hi @Maureen31, please keep us updated if you speak to your consultant,
Look after yourself
1 Like
Let us know how you get on x
1 Like
Maureen, thank you so much for your words⌠It must be hard coping with blood condition and still working in such a stressful situation. It is good to have contact with people who understand how it feels and how we have our ups and downs. Ihope that you still have plenty of hydroxy to keep you going. I see that your specialist nurses were redeployed, but surely now, they should be back for you. I hope that you get through to someone who can help. We can keep strong for each other. Kate x
2 Likes
Franko, thank you for your message. Please send my support to your family in Ukraine - I pray for them all every night.
2 Likes
Hi Nichola
I have just rang the number that my consultant gave me to ring if l have any concerns and the lady that answered has refused to pass my message on. She said l have an appointment on 28th of this month and the doctor has no time to talk to me. I asked her if she was refusing my request and she said yes. I told her l had concerns about my condition and l was very anxious. She said that l would have to wait until my appointment. I donât know what to do now!!
Maureen
1 Like
Hi @Maureen31, I donât know what to say. I would hope if she was really concerned she would have passed your message on. However, there is no excuse for being so rude and she definitely should have handled the situation better instead of increasing your anxiety further!
If you are still concerned and need to speak to somebody before your appointment then I would ring PALS for advice.
Keep us updated X
1 Like
Hi @Maureen31 I am very surprised that the lady would not even pass your message on for you.
Yes, the PALS (patient advice and liaison service) at your hospital is perhaps the next step if you wish to take it.
Yes, keep us updated, please and look after yourself
1 Like
Hi
I was diagnosed 2 years ago now with ET. I have never seen a consultant , only phone calls. I so far have said no to any drugs as I fear the side affects to much to risk. I am on Asprin daily and so far seem okay with that . My platelets stand at about 675.
The question I have for anyone on the forum who takes hyd is when you saw your specialist what does the drug actually do ? As I have read lots of comments on the site and some people say platelets have increased some say stable ? So Iâm really interested to see your comments. Do they stop you feeling tired? What other benifif itâs are there ? Thank you in advance for any replies. Frances
1 Like
This is what I understand from talking with my consultants over years - however - I am not medical at all, so please check back with your consultant
Hydroxycarbamide reduces the platelet count, itâs a low dose chemo,
Thatâs why most people canât take chemo for very long, because it reduces the platelet count, and if your platelets arenât in overdrive, like ours, then youâll end up with severe risk of bleeding - that would be very difficult to stop.
Hydroxycarbamide wonât increase your platelet count, the ET increases the platelet count, and the hydroxycarbamide does the opposite.
however, the ET itself can increase the platelet count, over time, so you may have to increase the dose, to keep on top of it.
My platelet count was in the high 900âs when I started, that came down to the 350-400 with one x500mg every other day, but gradually my platelet count has increased, and I am now on 2x500mg a day, to keep the count in the 350-400 range.
The aspirin helps stop the blood from clumping - but it doesnât reduce the number of platelets whizzing around the bloodstream.
Also, different people have different risk factors, when I was first diagnosed, I was fit and healthy, much younger, low blood pressure, non smoker, did lots of exercise, right weight for my height, and there was no history in my family of any thrombosis, heart attack etc, so my consultant was happy to leave me at 900+ on just aspirin , until I got âoldâ, when risk of thrombosis increases.
I would try to write questions down, so at your next phone consultation, you have them ready, and maybe you will be able to get some more helpful information from them.
2 Likes
Hi @macymae123, I think these queries are probably best answered by someone that knows your whole medical details as we are complex individual beings and a lot of things are taking into account when treatment options are considered.
As @heatherthomas so rightly says many of us find it worth writing down everything that we want to ask so we have it in front of us and donât forget anything. My mind goes blank in any medical setting.
If it is on your mind it is worth asking.
Look after yourself
3 Likes
Hi
I am not a professional so can only say what l am experiencing.
My count started at 1405 last March when l was first diagnosed and l am at 905 now, which went up from 717 in November. I take 3x 500mg every day of Hydroxycarbamide.
I am very tired and l have a metallic taste in my mouth. I get mouth ulcers regularly but have just got used to it and l live with it. The doctor at my last phone appointment said that itâs seems the platelets arenât responding to the drug. The drug is supposed to kill off the excess platelets.
My next appointment is next week where l have to choose a new type of treatment.
Iâm sorry if this doesnât help. What l have realised during this past year is that no 2 people are the same. This not only goes for the condition and treatment but also access to the professionals at the hospital that can help and the level of support you get from consultants.
Keep well and letâs keep in touch 
3 Likes
Thank you for your response it does help. I will wait for my next blood tests to see where I am 
1 Like
Hi
What a great response to my queries 
thank you for your detailed reply.
I will wait for my next blood tests and update you when I get the results.
Itâs strange how different every case is and how weâre all individuals with different views .
Thank you
Frances
3 Likes
T.hinking about you and your appointment next week. I hope that have written down lots of questions and get answers to them My next appointment is on Wednesday. I wonder if anyone else has had problems with high potassium levels and how a delay in getting the blood samples to be tested can affect this and give an inflated reading? This happened to me last weekend when I had to rush to the hospital on Friday evening with a very high reading, but the in hospital test came back normal
2 Likes