Just diagnosed and worried

Thank you so much for your very interesting information about how this disease has affected you. I am sorry to hear about how tired you are feeling and am glad you are finding ways to overcome it. I am thankful at the moment not to be having any symptoms so it was a hugh shock to find out I was ill.
I am going to hospital on Thursday to see specialist nurse and start chemo my levels are just under 800 not sure how bad that is and as I haven’t seen my consultant only a phone call it all seems strange I have a lot of questions to ask.
Finding this group is very comforting thank you.

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Only just dropped in to this; ET (Essential Thrombocythemia) is now referred to as an MPN (N for Neoplasm) since about 2007 when WHO reclassified it. I was diagnosed in 2013, and have been on 1000mg Hydroxycarbamide plus baby aspirin ever since. Negligible side-effects and until diagnosed with prostate cancer three years ago, had a completely normal life for someone in their 50s, apart from each birthday beginning with a 7. The only minor side effect is brittle nails, which is probably surviveable. So it doesn’t have to be a great problem, though others would probably disagree. My platelets hover around the 600-650 mark, which keeps the specialist happy as he reckons upping the chemo dose would probably oversuppress red cells. If you want a heap of original papers on the MPNs, contact me directly. Otherwise, Blood Cancer UK has a good leaflet on the MPNs (even though finally edited by myself…) and the specific MPN charity, MPNvoice has similar.

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A big welcome to the forum @JanPS, I’m really glad you found this lovely community at what must be an uncertain and anxious time for you. I hope the replies have helped you know you’re not alone in what you’re going through. Feel free to give us a call on the support line at any point if you want to chat things through!
It’s good to hear you have an appointment with your specialist nurse on Thursday. I’d encourage you to take down the specialist nurse contact details so you can contact them if you have questions/concerns, even when you’re not at appointments. Some people find it helpful to write down all of their questions before their appointments or telephone consultations, as it can sometimes be overwhelming to remember them all.
Keep posting @JanPS and let us know how you’re getting on. Do you have much support at the moment?

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Hi @JanPS, please let us know how you get on on Thursday and I really have found it helped me to write down all my questions, fears, thoughts, symptoms, feelings, practicalities etc. I have also learnt to ask those follow up questions too. That appointment is your time. Take care.

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Thank you Erica yes everything is going round and round in my head and I will write down questions, I presume there is no other treatment but will ask, I am taking aspirin at them moment since diagnosis.
The support here has been very helpful thank you.

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Hi Alice thank you for your response. My husband is being very supportive at the moment, he is furloughed from work at the moment although he is 72 and I’ve just finished work at 69 as I wouldn’t have felt safe in retail environment.
It has been a total shock and feel quiet frightened although I know it could be much worse and am very grateful for that.
Thank you very much for your kind response.

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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

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@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 :joy: I hope you have a constructive meeting on Thursday @JanPS

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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.

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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.

She is a toy totally black cockerpoo who is just under 5kg and she is my true companion love her to bits. Thanks for your support.

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Hi @JanPS, Meg sounds absolutely adorable and a true, unconditional companion.

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hi there @JanPS, just checking in to find out how you’re doing? and I echo Erica, how adorable does your lovely dog sound :smiley:

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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

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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.

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@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:

And again from Macmillan Cancer Support, is an advice page which talks through hydroxycarbamide as a treatment: https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/hydroxycarbamide

I hope this helps Jan? Please do keep reaching out

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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.

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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

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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

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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 :rofl:
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

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