I am a 60 year old lady who was diagnosed 3 weeks ago with E.T. after 12-18 months of, as I thought, weird, periodic and unrelated symptoms. Burning fingertips in my left hand, disturbed eyesight, dizzy spells and tiredness. The tiredness I put down to getting older, which was hard to admit, always having been very fit and very active.
I am taking Hydroxycarbamide and aspirin. I go back to the consultant next week who was very good and made a point of telling me this was not a terminal illness and not to get hung up on the word 'cancer'. I'll let you into a secret Doctor, I lost my lovely husband almost 8 years ago to the dreaded disease, so it is no stranger in my life unfortunately.
About a week after diagnosis, I had a meltdown day, cried my eyes out, felt very sorry for myself, having nobody to hold my hand at home, the dog tries but he has his own agenda requiring me to have energy. I think this is the hardest thing for me so far. A rethink on diet may be required as I have gained 10lbs in the last 12-18 months due to my body feeling like a lead weight most days.
I just wanted to say hello and I have not felt so alone in this, having read some of your posts. I am sure I will get informed advice to any questions I may have from you all, thank you.
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Mica11
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Hi Mica, I too have ET and on the same medication as you, Try and not let the condition rule ur life , that’s how I cope , I’m sorry to hear your alone but with this brilliant site u have a lot of friends in the same position as us , and if you have any problems regarding the condition usually there’s answer on this forum , Take care , Darren
I am 63 and have PV. I was diagnosed 12 years ago and lost my husband to cancer 12 months later so I have lived alone with this for the last 11 years. I have daughters and grandchildren to fill my time and this site is very supportive. Sometimes the people with partners don't get much support so I don't feel too hard done by. At least we can rest when we need and eat what we want. Yes, I feel sad sometimes and wish I had someone to talk to at home on the cold winter evenings but you can always post on the site and someone will answer you. I have lost 21lbs since April and have a dog, now 7 months old who gets me out and about twice per day.
Whereabouts are you? If you can get to a forum they are very informative as is mpnvoice.org.uk
Hi welcome to the site sorry to hear of your loss and you are on your own hope you have family and friends who can listen and be of help . At first my family and friends were a great help but over the nine years of having ET then PV they no longer ask unless I bring it up that’s why this site is so helpful every one under stands I am going tomorrow to the London forum day for the first time may be has Judy said you could go to one . You will have good and bad days but mostly good I hope keep in touch and have a good week end best wishes Poppy
Hello Poppy, Thank you for the lovely welcome. I have 3 grown up children all away from home, one of whom has my 5 year old grandson. Life is busy for them and I don't see tham as often as I would like but at least I do see them.
I guess it becomes old news in families as long as your health is fairly stable and it's just something they have become used to.
I am going to attempt to up my exercise after my hospital appt next week all being well. I am hoping it will give me more energy in the long run.
Enjoy the forum tomorrow and I hope to hear all about it afterwards.
Hello Judy, Sounds like we have similar situations. I have 3 children and one grandson. Very well done on your weight loss! Not easy but a dog definitely helps. I am my own worst enemy since my husband died, I rarely cook if I can get away with it unless I take a fancy for something. So my diet is maybe not as good as it should be.
I am in Aberdeenshire which always seems to be so far away from most things. So nice to be in touch and thank you for your lovely message.
Lovely of you to get in touch, no idea why but I feel quite surprised and a sense of relief to find someone local to me undergoing a similar journey. Good to know about the support group at Maggies and I feel sure it is something I would love to be a part of.
I am sorry for you, that you feel this way and don't really have any support "in live", but you do have us, you know!
I got diagnosed 2008 but became ill 2007.Possibly before...
Hydroxycarbamide and 3 other medications which all gives me all the side effects one can think of. Sometimes I feel like you, when I read too much about E.T and what can happen and so forth, I just have to quit reading and do something else, for example cleaning. That might seem like a good thing, to have a clean house, but the reality is that it is just therapy.
The weight gain is something not to worry about at this stage. Since I started with all the medication I gained about 15 kg but that makes me look a bit healthier somehow. I am filling my wrinkles! :-))
Thank you for making me smile ML, 'filling your wrinkles'!!!
I am normally a self sufficient kind of woman and get through things on my own quite well. It would just be nice to still have that special person to share my space with when I have a wobble. There is great comfort in being able to speak with others going through the same or similar things though and for that I am very grateful .
Hi Grace, and welcome. I too am newly diagnosed with ET and understand your wobble. It all seems a bit overwhelming at times, especially as so many out there don’t really know what it’s all about. I’m glad you have found this forum. The people here are wonderful and so full of information - it’s like having a hospital full of specialists in your own home! I have had wonderful support from this forum and I’m sure you will too.
I too suffer from fatigue and know the feeling when the dogs look expectantly at me - it seems every 5 minutes sometimes! I am learning to pace myself and do what I can, when I can. Having been previously very active and fit I almost feel like I’m mourning my lost self. On the bright side, now I am taking things at a steadier pace I’m actually starting to appreciate all that’s around me and taking time to stop and look so it’s not all bad!
The London conference is being streamed live tomorrow - Maz posted about it a few days ago and gave out a link to register - maybe you could fill your day watching? I definately will.
All the best to you and keep posting to your new family.
Thank you for the welcome Gill, it is comforting to have others in the same position and I guess, like me, most hadn't heard of what they were diagnosed with previously, we seem to be a rare bunch. I lost my married self when I was widowed and had to find who I was as a single person, a difficult journey. Now finding myself as a more tired, less fit, daily med consuming...oh heck, nothing stays the same does it. This too will become the norm I guess. No point railing against what cannot be changed, that would be a waste of precious energy. Can't help feeling the odd flash of anger at it though.
I may have to wait to hear 'highlights' of the conference. I have a couple of things to see to today out of the house.
Are you saying that your husband also had an MPN? I was diagnosed with ET last year at the age of 60 and I then discovered that my employee who is 75 also has ET and has been taking Hydroxy for 12 years and is doing OK. ET is not thought to be catching but sometimes I wonder. Maybe it is a symptom of something else. As your doctor said, do not get too traumatised by words like cancer, most of us will get something or another as we get older. Healthy eating, gentle exercise and other self-management strategies will help enormously. I have lost 3st since the diagnosis and I am doing fine.
No, my husband died of secondary bone cancer, a real horror story, I am not nearly as upset about my diagnosis as I was about his. I'm just throwing my toys out the pram because I have always been an 'on the go' person and my oomph has up and gone. I still do Pilates once a week and intend going back to circuit training on a Thursday to see how I manage. If that doesn't suit I may have to take up swimming again, (never my fave), it is a gentle exercise.
Well done losing all that weight. Certain areas of my diet need rectifying too I guess. Still adjusting to the need to change and being a bit stubborn sometimes, I do love a cheese scone!
Sorry you are finding it tricky to come to terms with your diagnosis and new way of life. I must say, I still struggle with the fatigue and the fact I have ET 10 years later. The way you describe mourning the loss of your old self resonates with me as I have fairly recently come to this realisation myself. Some things I learned from the MPN day I attended yesterday -there has been a unique study re yoga and MPN's which shows it has benefits for wellbeing so this may suit your excersise needs. Acceptance that you have an MPN is a way of finding peace with and dealing with your condition which is a concept I will explore. There was one more thing but I have fogotten, which seems to be happening recently so I will get back to you!
In general I think most humans are resistant to change and this kind of change nobody wants. I will probably 'resist' amending my diet too drastically all at once, having been used to being able to eat anything and not gain weight. Finding this extra 10- 12 lbs is making me very annoyed but stamping my feet like a spoiled child won't sort it and knowing full well I have done it to myself, it makes me mad. It's not that I have been eating more, just moving less because of this illness and the fatigue.
I have always done Pilates and still do, used to do yoga many years ago but my balance is none too good with the swimmy head feeling.
I can relate to the acceptance thing, having my husband die from cancer. I accepted his death early on, allowing myself to feel all the feelings, go through the grieving, facing it head on. No bottling things up or avoiding them. It was just the way I felt was best for me and I feel sure I will do the same with this diagnosis.
Hi Mica, good to see you are getting so much support - so pleased you have found this brilliant forum. I also have ET (much older, at 76) but have totally changed my attitude and now think 'it is not terminal, it doesn't actually shorten my life, so am going to live life to the full....and finding many lonely people out there, who just love being asked round for a cup of tea or coffee and that is a big uplift, too. By the way, an excellent way to lose weight, is to drink a lot more water, preferably before meals....and it helps, too with the finger pain and is good for us, too! You have had such incredible sadness in losing your husband and we all feel so greatly for you. Sending very best wishes and hoping there will be blessings for you every day...lots of silver linings to those dark clouds, Tinkerbell
Hi Tinkerbell, I am pleased to have found you all too, knowledge is power and you all will know more than I do. I am doing my best with the extra water thing, carrying around my sports bottle with me. I don't always manage the full extra amount every day or I would never be able to go out or drive into the city, what goes in must come out.
Thank you for your very kind words. I am used to living on my own now but this diagnosis did make me wish I wasn't. I am not a doom and gloom kind of person though and I do tend to bounce back and I try to make the best of life, usually quite well. Hope you have a lovely weekend.
Grace is a beautiful name and sure it goes with a beautiful and very brave person....blessing you and hoping lots of uplifts for you, each and every day...and also hope the ET won't overshadow your life too much....very, very kindest wishes, Tinkerbell
I am sorry to hear of your loss, however, on the brighter side you have found all of us here in a somewhat similar compromise.
Still... I do wish that there were some kindly phrases & words that might help comfort you at this time.
You made me smile when you mentioned that your K9 has his own agenda... don't we all... (?)
Having this condition, (originally ET & now MF), I have learned to apply some of my philosophical musings, & it does help me a tad at times, in my case...
I also remember putting on weight suddenly when I initially also took HU for my complaint. Since my reclassification to MF, & a slight attitude adjustment, my diet and my exercise regime have now seen me shed over 20kg & still falling... ever so slowly which is best really too...
Philosophically, I tell myself today that I am no longer immortal, as I once believed of myself, and yet I am determined to be a better looking corpse, whenever that day might arrive...
I started cycling about 37 weeks ago, & it has improved my general overall fitness, (& possibly aids in my rather depressive disposition too). However, my fatigue is generally more exacerbated of late, & my nausea & bone pain also gives me moments of great discomfit.
I live for the moments when I can spend time w/ my two grandchildren, & I can never se them enough...
I am also determined to take up scuba diving, (even though such an attempt will likely prove somewhat problematic). Nevertheless, there is still too much to enjoy...
I have not been in a longterm relationship for quite sometime, & now in some ways I kind of feel it would be unfair for me to try... However, the young boy in me still sees all the candy in the store, & it delights my imagination. Nevertheless, I believe that such a task might be even less likely than my scuba expedition of ever coming to fruition, but nothing is impossible either... is it (?)
Luckily for me, I do love to study & learn about almost any subject. It seems that my curiosity & imagination know few bounds... Hence, I continue to seek and find things about life that absolutely fascinate & mesmerise me... There is a magic & beauty in everything I see that is often hard to quantify w/ words alone. I hope that you will soon find whatever it is you need to smooth the way forward...
Hi Steve, Just wanted to say hello because your reply to Grace made me smile. My brother lives in Sydney (a beautiful city I think) and has done for 30 odd years. Wish I could get him to think a bit like you. He is healthy, but lonely, as his wife died from cancer several years ago. She'd beat it before but it meant they couldn't have children. The rest of his family live in UK. I'm really hoping that my condition (PV) will settle to the point that I can plan ahead for a long visit there.
I have recently returned from a 'whistle-stop' three week tour of Cambodia & Thailand. Flying wasn't a problem for me, & besides it was only a 10.5 hour flight at the longest. Coming from the UK means a tad more moving about in the plane is all, in my view... However, falling-off a motor bike was somewhat more disturbing, (I might have tried to be a tad slower & more patient w/ myself...)
It will be my shout for a cafe/beverage when you drop in to Sydney into the future okay...
Hi Steve, Thank you for your entertaining message and mental musings. I love a good tangent myself.
My exercise regime is fluid at the moment, the only statics are walking the hairy beast and my weekly Pilates class, energy having been lacking for the last 18 months. I have however signed up for a weekly circuit training course and my best friend was a world class swimming coach and she wants to get me back in the water, not that I need lessons but there is that agenda thing again, she wants company in the pool. I am determined to try and not give in to the tiredness too much.
I would never say never about anything in life, most things are possible, the only limits are the ones we put on ourselves.
I think it's always a struggle coming to accept that we are not as 'titanium' as we would like to believe and once we do accept that fact we can usually cope with things. I am not a pessimist by nature and just sometimes the clouds get a little dark. I can usually find something in my life to make the sun shine again and everyone here seems very friendly and I already feel a lot better. Have a good weekend!
Grace x (the only other person I know who sends me an xo is a good friend of mine from Queensland, a very Ozzie thing maybe.)
I have had ET for 25 years. I was 47 and am now 72. There was not much information about this at the start but it’s much better known now. I was given Interferron to start with I had to inject myself everyday day for nine years. The platelets suddenly settled down in 1999 and I just took aspirin for 6 years. They flared up again 2006 and I started on Hydroxacarbamide. I am still on these after 11 years, instead of aspirin I take a blood thinner Clopidegral. I have been assured that although this condition is linked to luekema there is no reason to believe it is life threatening.
Among other things I have acquired over the years is under active thyroid, pernicious anaemia, and bad asthma but not up sure if it’s linked to ET though. I have other things as well but it makes me sound like a hypochondriac. Just to say I was worried about ET but it’s not always on my mind and it doesn’t seem to affect my life too much. I am more worried about taking the Hydroxacarbomide and what effect it is having as it is a chemo drug.
Anyway sorry to I’ve gone on a bit now, but just to say you can live with it without too many problems.
Thank you for taking the time to message me MoNut, I don't envy you having to inject yourself when you were first diagnosed. I guess I have it easy taking one capsule and one little aspirin by comparrison. I hope your other conditions are not too bad to cope with. I really feel I should not complain about some aches and pains, fatigue and weight gain.
Hello there, I had chronic fatigue and depression etc. I now at nearly 63 have ET and the beginnings of MF! So fatigue on top of fatigue! I had to rehome my darling dog, a staffie, as he was too strong for me and I couldn't walk him. (He has since died) I miss him still. Could you ask a local animal charity if they know of anyone who could help walk him? I had this help temporarily as they like to help dogs stay in homes.
This site has helped me immensely as others have the same symptoms. My doc says nothing is connected to mpn's! HAH!
I am sorry to hear you are now facing the beginnings of MF and hope you are coping okay. The fatigue is the thing that gets to me most and I foolishly thought I may feel more energised once I got used to the meds. I realised fairly quickly though having read through some other's experiences that's not the way it works.
My dog is about 50kgs and he can sometimes be quite a handful if he meets an unfriendly dog. I am already struggling to keep my feet sometimes. I am a member of the breed welfare site and have already checked about possible rehoming should it become necessary.
I don't think some Docs enjoy their job, how on earth could yours say that, it made me smile though as I shook my head.
The next session is The next meeting is Tuesday 5th December from 2:30 to 4pm. This is a very active and supportive group. Feel free to come along. Eleanor
I read you symptoms and thought wow I’m not the only one who feels she’s wearing lead boots. My platelets are under 400 now and I almost feel normal. I take 16 tablets a week. It’s taken me two years to come to terms with my ET. You have the added heartache of no longer having your husband. The best advice I read and followed was to do what gives you pleasure. I find even if I don’t want to exercise, dragging my self to yoga classes and swimming makes me feel ‘normal’
You have come to the right place - there is a fantastic community here. I'm a 67 year old chap and I got my ET diagnosed in August, with similar symptoms to you. The good news is that the hydroxvcarbamide and aspirin are bringing the platelet count down quickly, as as they reduce so do the symptoms.
I drew up a list that I called my '10 reasons to be thankful' which I look back at if I feel a bit down. It works for me and starts with being thankful that I was diagnosed with ET and am now able to take steps reduce my risk of a stroke etc.
Hi, I have the same ET. I was in the middle of my counselling course on helping people come to terms with life changing or limiting illnesses when I was diagnosed. I couldn’t believe the irony, still back doing my counselling with great insight now as well. I wish you all the best. This is a great forum to vent you fears anger or whatever. Raff
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