Thanks for the update @KevinM. If you want to chat anything through before or after this appointment please don’t hesitate to give us a call. Hope you’ve been doing okay.
2 Likes
Thanks for letting us know, a date for your diary. It is very natural for feelings of anxiety to set in before, during and after appointments I think. We are here and so is the Blood Cancer UK support line if you need it. Take care and please let us know how you get on.
1 Like
Got a note from haematology about my annual review for ET, which should have been next week (but only by telephone, so not sure how Prof Watson would palpate my spleen). Appt has been put off till end of September, still by telephone, but the letter was very insistent I should bring it “to the appointment”, and to check whether an ambulance was needed to get me to appt. Think I SHOULD be able to get across the living room to the phone without assistance, but will make sure the letter is in my hot little hand!
3 Likes
Hi,@DickM, Brilliant and don’t forget your mask and hand sanitiser !!!
1 Like
Yes I’m starting to get slightly cynical about telephone appointments. It seems this was the desired trend even before Covid 19 as my GP’s were regularly sending me texts about e-appointments. Not sure how this is an improvement though. It just means doctors can spend less time talking to patients. Thursday will be the test when my consultant discusses my bloods. Still no sign of the Zemita treatment for my bones that I was supposed to start 2 years ago.
1 Like
Gotm to go to hospital to have swab today on drive through before my starting chemo tablets friday
1 Like
@KevinM I hope today goes smoothly for you - how are you feeling about Friday? Do remember we’re here if you want to chat anything through.
1 Like
How did you find the telephone appointments @Franko? Is your appointment on Thurs by phone too? I do hope it goes well for you!
1 Like
Hi @Franko, please let us know how your appointment goes Thursday and I hope you get answers to all your questions, it’s your time and opportunity.
Hi @KevinM, let us know how your very different appointment goes today and how it feels taking your chemo tablets Friday.
Hi. Got tablets but not to start taking at 4 a week untill after my Bone Marrow on 01/0902020
2 Likes
Thanks @KevinM, the waiting game goes on, let us know how your bone marrow goes.
1 Like
Hope all goes well today @KevinM. Take good care.
1 Like
Been thinking of you today @KevinM. Hope it all went ok.
1 Like
The Bone marrow biopsy was fine with a good sample and have had no pain from it.
Also started my Hydroxycarbamide next day and am taking 4 a week
2 Likes
Gosh @KevinM, that is good news about the bone marrow biopsy and that you started on the Hydroxycarbamide the next day. How are you feeling and what’s going on for you?
1 Like
That’s really good news! Things going ok?
2 Likes
Interesting that you seem to have a familial link with the MPN. Obviously, the actual mutation, Jak2, CALR, MPL or just plain mysterious, is NOT heritable, so can’t be passed on to the next generation directly, but there do seem to be cases where there is a higher than random incidence within a family. My father died age 75 in 1972, and having been diagnosed with ET in 2007, I suspect that some of the symptoms Da showed in his later years may well have been related to ET, though we’ll never know. If there is a familial tendency to the relevant mutations occurring, it would be nice to know what it’s possible to do to reduce the probability of mutation, but as far as I know, there’s nothing.
Crazy, but I did feel a certain degree of relief when I got out of being 75!
1 Like
Hi , sorry about such a late reply as I only dip into this forum from time to time.
My ET was actually picked up on a long time ago when I’d had my youngest daughter who Is now 32.
It was only more recently that myself and my sister were checked and found we didn’t have the jak2 mutation.
After mum died age 90 ( she was about 88 presenting initially with anaemia when they first discovered her elevated platelets and the jak2 mutation ) which my sister and myself do wonder if she had issues well before this as over the years had spells of anaemia treated back in the day with iron tablets without further investigations . Her consultant once again asked me and my sister to get checked out . My sister is 4years younger than me and has borderline platelet levels which sometimes raise a tad over the norm. She however has a GP who is unconcerned so she’s never been fully checked out …yet ! She is aware and will push for a haematology opinion if at her next check platelets go up further
I had been fairly stable though a little elevated over the years but more recent repeats of blood count done showed I had spiked quite high .
This lowered naturally over the course of 6 months but still not low enough . I finally started taking hydroxycarbamide just over a year ago on a very low dose .
Mum’s consultant had great interest in the possibility of a familial link to ET but I seem to remember that the jak2 mutation was more random.
I fully understand your being glad to turn 75.
It’s all very psychological and illogical isn’t it ?
I was concerned in a similar way about taking the chemo tablets as mum was on them for only two years before she died . She was however 90 !!
I’m 67 so if I hit 90 I’ll be happy. 
I’m unsure about preventing a jak2 mutation , if there was I’m sure we would have been told about it.
Research is discovering new things all the time so we may get answers at some point.
Once again apologies for my delay in reply .
Since easing of Covid restrictions ( though we may returns to some more next week ? !) I’ve been a bit busier and generally don’t think about my ET much day to day .
Stay safe
Brenda
2 Likes
I have know been taking Hydroxycarbamide for eight weeks and i feel fine apart from having to drink at least 3 litres of water a day and the monthly blood tests i am feeling very well
2 Likes