It’s good to hear your husband is so supportive @JanPS. It’s so totally understandable to be feeling this way and I’m sure that so many on this forum can understand and relate to these feelings of shock and worry that you speak of. Do feel free to keep sharing your feelings, worries etc and let us know how you get on Thursday.
In case it’s helpful, here’s the Blood Cancer UK booklet on MPNs. The general information on ET is within pages 35-48. If you would like a copy posted to you, just give me a shout via private message on contact our support line. Take good care, Alice
@Lindatyrer@JanPS welcome to the forum. Although my connection is because of HL (which I eventually kicked into touch 11 years ago) I still suffer from the side effects, including fatigue. Having a cancer diagnosis makes us reassess many things, like who and what is important in our lives. Being in lockdown/shielding seems to have taken pressure off to do things. We don’t have to apologise (and feel guilty) if we are not able to join in something. I also get housework (which I keep to a minimum), and other things,(like shopping pre-lockdown) out of the way in the morning. Like @Erica I found out the value of being able to stick up for myself, and using the word ‘no’ is a positive, especiailly when you have not used it much before.
Take the time to daydream, sit in the garden feeling the wind on your face, listen to the sounds around you. I really had the urge to stand in the pouring rain at the weekend, but made do with sticking my face and hands out of the door …a dose of pneumonia would be most unwelcome I hope you have a constructive meeting on Thursday @JanPS
Thank you Linda for your email, it is comforting that you can live with ET and so glad you have Kicked HL into touch and that you continue to have a good quality of life.
I will know more tomorrow after going to hospital. Yes i love walking in the rain and wildlife of any sort and my sweet little dog Meg.
Hi, @JanPS, what breed is your sweet little dog, Meg? Please let us know how your appointment at the hospital appointment goes tomorrow and I hope you get all your questions answered. We are all here to support you.
Hi I have had quiet a good appointment today with specialist nurse and she was very informative although it’s quite scary listening to all the possible side effects of the chemo she assures me it’s a low dose chemo. I have to start in the morning and hope I can get on with my day and not worry to much waiting for things to happen!! I would welcome your experience of hydroxycarbamide and allopurinol. Many thanks
Hi. It is better to know what is a ahead than building up all sorts of scenarios. I have been on Allopurinol for 18 months for gout, and have been fine. Don’t forget that medications can be used for more than one reason though! I just have a blood test every year, but you will be having plenty anyway, so they will be keeping an eye on things.
@JanPS Hi Jan, I hope you and Meg are doing okay?
That’s so very reassuring and encouraging to hear that you found the appointment to be informative. But Jan, it’s equally understandable to feel overwhelmed too. Did you find you had a lot of opportunity to ask questions you had? or know where to go should anymore come up?
Jan, I thought these links may help you in the meantime:
Hi I was diagnosed with a MPD 4 years ago and as well as venesection and aspirin also take oral chemotherapy. I have to admit the chemo isnt a problem. Biggest pain is getting the doseage right, mine changes all the time. Hope this is reassuring.
Hi there ,
I understand you feeling worried but as another group member said the Chemo treatment for ET is usually very low dose. I had high platelet levels which varied quite a bit - discovered from my being age 30ish as it flagged up on a routine blood test - GP unconcerned but after I asked further questions when told it was raised again when I was pregnant - GP referred me to haematology ( still unconcerned)
Heamatology consultant at the time monitored me for a few years , did bone marrow tests which showed an abnormality but ended up discharging me as I was reasonably stable.
After moving house ( different area ) over 3 years ago , new GP repeated tests and happy levels not too bad . 2018 my mum age 90 Who had been diagnosed with ET aged around 88 ( but also had other age related underlying conditions ) sadly died - knowing I had some platelet issues and as I was much younger than my mum who despite her conditions had been very agile and independent until about 4weeks before she became unwell age 90 and a half !! - her consultant asked me to get my levels checked again as I was now over 60 .
I had routine bloods done age 65 in Jan 2019 and was shocked to hear that I had spiked quite high.
A referral to new local Haematologist, further bone marrow testing and I now had a more firm diagnosis of Triple negative MPD ET !!
I opted to monitor my levels for a while in the hope they would drop naturally ( they had before- but a degree of denial I think. ) levels did fall a bit but not sufficiently and by September I reluctantly accepted to start on the low dose chemo tablets .
I’ve now been taking them since last September with an increase in my dose , levels have fallen gradually and While not yet as low as they would like the trend is going the right way .
Like you I was worried about the diagnosis ( despite being reasonably happy over the years knowing my platelet levels were higher than they should be !) It’s taken me a while to come around to realising that my concerns were partly psychological!
I’m still here after over 30 years of having ET but not really knowing fully that I had . The worries and concerns I had about the medications (Haematology put me on daily aspirin too and my GP suggested I have statins too as my cholesterol levels were also raised despite attempts to lower that naturally as well.
Rest assured I’m still fit and well. Pre lock down was a very busy Nanna to grandchildren and continue to be active and have various hobbies including walking , gardening , swimming ( when the pool was open) Cake Decorating & knitting .
I don’t know your personal situation but I trust like me that you will be able to move on with everything and not worry too much .
It does become less stressful I think once you learn to accept that the treatment is preventative. Yes I’ve got ET and it won’t go away but the ongoing treatment is hopeful keeping me well in a similar way to how others conditions are kept stable rather than cured.
I’ve not had any unpleasant side effects or anything either.
Still me , still living life as full as possible in the current climate ( taking all government guidelines seriously of course )
Take care, stay safe and try not to worry too much . I’m sure you will be fine .
Kind regards.
Brenda
Hi Brenda
Thank you so much for sharing your experience with me, it has been a great comfort and helped me in trying to get things into perspective.
I also am an active Nanny with 4 granddaughters enjoy doing my exercises daily walking my lovely little dog, gardening and when I can get back to it after lockdown I’m in a choir I do tai chi qigong and line dancing.
I feel a bit at the moment like my life as I knew it has changed but I am trying to fight that and carry on as normal as I can, and not let all those negative thoughts take over. The way you described it as a preventative procedure helps but it was the thought of chemo tablets that was frightening but I’m obviously aware doing nothing is worse. I am on my third day of tablets including aspirin and touch wood am feeling fine I was wondering how soon I will have a blood test after taking tablets as my telephone consultation is not until end of August so will check with specialist nurse soon.
I do hope you continue to stay well and thank you again for sharing.
Best wishes Jan
Hi Jan,
I’m glad I’ve helped in a small way to make you feel a bit better .
I don’t always check on this link that often so apologies if I’m ever late responding.
I think it’s normal to be left for a couple of months on the tablets before they check on you again as they take a while to slowly reduce Platelet levels and adjust your medication dose as needed.
I fully understand your feelings about the medication , I felt exactly the same and I admit to being a bit of a difficult patient. I’m sure my consultant, who is very patient and understanding, probably heaved a sigh of relief when I left his office last year as I was so hesitant about the medication and fired so many questions at him. ( being a retired Nurse can be a hindrance sometimes)
To give you a rough idea of appointment spacing . I started my medication after my September appointment last year , was reviewed at the end November , as consultant agreed for me to take minimum dose mon- fri inclusive initially. Levels had reduced by then but not enough.
Consultant was happy for me to carry on a while longer at a same dose ( he did want me to increase but I reasoned that I’d been without medication for 30 odd years and no bad effects and had a history of fluctuating levels so he said he was happy for me to carry on with another review in January this year. )
A locum consultant told me levels had dropped a bit more and he would let my regular consultant decide next appointment about dose but that they might increase.
My next appointment was in March just before lockdown !
Consultant pleased that my trend was going the right way but surprisingly my levels had increase a tiny bit. I had a very tiring spell in January and February as my youngest daughter had her first baby with complications and I helped out a fair bit - very stressful and loss of sleep ! There’s no evidence if stress can influence platelet levels but Looking back mine have tended to yo yo linked to stressful times but it may we’ll be pure coincidence .
After discussions and in light of covid and me being nervous ( told you I’m not a good patient !) in case a higher dose affected my other blood levels and immunity consultant was happy for me to increase one tablet every day and just double dose every Sunday. ( he wanted me to take more !)
I then had a telephone appointment in May - due to covid ( blood test before) to check and they were happy things were reducing well .
I’m keeping my fingers crossed as I have yet another appointment at the end of July.
It seems to be fairly “normal “ to be seen a fair bit while they juggle your dose to see what suits you to maintain a reasonable level without it affecting other things . I also believe it’s routine at most haematology appointments to have blood taken prior to each appointment.
That bit of it I’m more than happy with as the bonus is we get a free check on kidney function , liver function and other blood levels . Hopefully the appointments will become further apart as things are more stable.
I’ve been absolutely fine so far , I do get the odd days as I did in the past where I run out of steam but I’ve rationalised that despite being 67 I tend to rush around a lot , I used to work late night shifts and on call as a children’s theatre nurse so I’ve got a very odd body clock anyway and function better in the afternoons. Now i have taken a step back a bit ( more so in lock down ) and attempt to slow down a pace, regardless of ET I think I need to learn to pace myself better instead of expecting to keep going flat out like a 30 year old
I do hope that you , like me , end up “ carrying on as normal “ in between all the appointments - as someone who’s only ever had ophthalmic issues - to go to taking medications , statins , aspirin and chemo tabs all in the same month and a run of appointments I admit did struggle with it all . The more you speak to people I think the more you realise that other people have had similar initial struggles and yet further down the line feel better as it just becomes part of your life that you accept .
My brother in law was diagnosed a few years ago now with a chronic form of leukaemia - I remember him and his wife feeling all gloom and doom and yet a few years on and after a session of “ proper heavy chemotherapy” he’s still reasonably fit and active well into his 70s. My cousin has to take hormones for life after having treatment for breast cancer. Both totally different conditions to ET but both expressed how they struggled about diagnoses and about various medications and yet they now don’t really give it all much thought - they and others helped me to put things into perspective.
I’ll keep an eye out to hopefully hear how you are doing.
Regards Brenda
PS seeing all the activities you normally do I’m guessing that due to Covid some of them are on hold or virtual right now . I’ve had a few down moments during lockdown as I’m normally out and about so much . You starting on meds etc in the middle of such a surreal time will I’m sure have magnified the feelings about everything. I’d advise having a few social distance back garden meet ups with some good friends to chat to and off load to if you can - my friends helped a lot over a coffee when I was in panic mode last year.
Keep busy - but not to the point of burn out. If you’re feeling fit and well , I was told by my consultant that I shouldn’t expect to be any different.
I appreciate that some people have symptoms with ET but I didn’t really have any ( other than being anaemic from time to time when younger - fine now !)
Take care
Hi Jan ,
Pps
I’ve only just caught up on all the other messages so this particular reply might be a tad too late!
My mum was given Allopurinol when she was started on Hydroxycarbamide some years ago . allopurinol is given as a precaution as it helps to excrete excess Uric acid which might happen due to all the breaking down of the purines from the reduction of the excess platelets ( done by the Initial hydroxycarbamide) excess uric acid can settle in joints and cause gout pain and swelling .
I asked if I needed it but was told no as I was starting on such a low dose of Hydroxycarbamide - however I did get initial Sudden ankle pain About a week after starting the tablets ( sorry I’d forgotten this happened when I typed I’d had no problems ! See how easily I’ve put the bad things out of my head given time🤣)
I attended the hospital walk in for haematology and a registrar did give me a short course of allopurinol as cover. The pain did settle but a further blood test indicated that my uric acid level wasn’t actually that high.
Thus allopurinol should only be a short term thing I think while your body adjusts to the Hyrdroxycarbamide and if my memory serves me well you need to drink a bit extra while taking it to help to flush out the excess which is excreted in urine.
The list of possible side effects from Hydroxycarbamide is scary to hear but take heart they are obliged to highlight them all as you have to sign consent for chemotherapy drugs and part of doing this means that everything has to be spelt out to you in order for you to give “informed consent”
Virtually every medication even mild over the counter medication / drugs come with “possible “ side effects taken from research. Most of us are happy to take such medicines and I bet most people never read the insert leaflets! The most common side effects are often the least serious . Hope this gives perspective
Brenda
Thank you for your comments Brenda @Brenthebaker. As I said in my reply to @JanPS, I have been on Allopurinol for gout, and I have to make sure that I drink 6x250ml a day to flush out uric acid. Apart from checking the bit where they have who should not take this medicine, I steer clear of reading the leaflets inside medications unless I am getting a reaction, then I check. We would never take anything otherwise.
Fully agree . They have to list absolutely anything that has been reported during research on drug leaflets. The most common side effects are usually the mild ones.
So far I’ve had no ill effects from Hydroxycarbamide and had none from Allopurinol either .
Hi hope you are well, I wondered if any of you have a glass of wine while taking your meds and if it has any effect as I’m 12 days into my tabs wondering if I might have the odd glass of wine. Would appreciate your input please.
I have the very occasional drink . Either G&T or Whisky &Coke. I’m not much of a wine drinker but have had the odd glass of Prosecco. When I say odd drink I literally do usually only have one drink as I’m a real lightweight where alcohol is concerned. I do go for weeks without any alcohol.
I believe the occasional drink isn’t a problem. Alcohol can dehydrate you ( best to stay well hydrated ) so as long as you don’t drink to the point of a hangover I reckon it’s ok
I hope you have a constructive meeting on Thursday 
