last week we went to Liverpool, for three days, which we have done many times. as my brother in law lives over there. We booked into a great Hotel, then we went to meet Leon, we had a look round the shops, then we went for a few drinks, Not to many as I have MF. I am on ruxo, and have been on them, for over 12 months. once over the head aches, they have been ok, my spleen as been steady. up and down, mostly up. But last Thursday night, I woke up to this pain in my spleen. It was so bad after about an hour, we had to go to Hospital, All the staff were great, after gas and air, painkillers, and a night in hospital the pain eased, and I was allowed to go back to the hotel, My one and only meal in our hotel. breakfast on Saturday, which was very nice. but on the coach coming home, it all came back. I was told to go the hospital, on Monday which I did, my spleen as grown from 10 cm, 15 cm, I am going for an ultra scan, on the18 August, although its still a bit sore its not to bad, So I will have to wait till then. to find out, If anything changed, hope not, but we are in the hands of the gods so they say. will see.
Bye for now
Bernie62.
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bernie62
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Hi Bernie62, I am so sorry to hear that you had such a bad time on your trip to Liverpool and on the way home. I hope all goes well for you on 18th August when you go for your scan, and I hope that you feeling better now. Best regards, Maz
thank you for your reply, I do feel a biit better today, I was a bit down yesterday. I suppose its the not knowing, whats going on, thats the problem, People on this site are so positive, I will have to take a leaf out of there book, and cheer up. On a lighter note, David the buddy you sent me got in touch, afew days ago, So will get back to him later on today.
JR, hope your ruxolinitib, works for you, all the best to you all,
I am not an expert on spleens, in fact not an expert on anything to do with MPN's but I am an expert on how they make us feel. Being truly worried is something I do understand. My spleen is 'very enlarged' according to my haem and I have progressed to MF from PV in recent months. Although I cannot honestly say I have pain it is uncomfortable some times and the same day you have your scan, I am going to meet Professor Harrison so a big day for both of us. I will be thinking of you. Strangely enough we were away at the weekend in Brighton (it was my birthday) and on the Saturday I had the lead boots on and such tiredness that after two hours I begged to go back to the hotel. I am passing my worries over to Professor Harrison now in a diary as I can do nothing else practical. Take care Bernie, Linds x
Thanks for your reply, My spleen is normly uncomfortable, I can cope with that.
As most people do, with any sickness, but there comes a point where you have to see someone. It was the first time, In the two and a half years, since being told i had MF, that i have had to seek help, outside an appointment. But i hve been told since by my heamo, dont be a hero,seek help when needed, and take the painkillers, when needed. But like yours, its mainly just uncomfortable, so i did not have any painkillers with me. But from now on they go where i go.
Hey Bernie - sorry to read your post about the old spleen giving you more grief than the usual tweaks and pangs - it can be really uncomfortable for sure. Hope your ultrasound goes ok my friend. As Ive posted several times I have had PMF for at least 8 yrs, so I appreciate any fellow sufferers sharing their highs and lows especially now those taking Ruxo.
Bernie I thank you for sending me your best wishes even though you are having a tough time at present. Good Luck and please let us know how you get on. Cheers JR
Thanks for your reply. i dont know where we all would be, without your whit or charm, which ever it is, it works, So good on you, keep it up. I am glad your Ruxolinitib, is working for you.
I think i am more meatloaf than Leo Sayer, At 5ft8" and 14 stone, playing rugby kept me fit. my 14 st is not as solid as it once was, so i have to watch what i eat, I also mis working. i was a Builder, so although it was hard work, I mis the crack with the lads. who would have thought it would end like this, Not for just me, I bet we all could tell simaler tales. But eat while you can,
It will help keep your strenth up, And we all need that.
Linds = To wish you a belated Happy Birthday and that you have a positive outcome from appt with Prof Harrison. Im a tad envious as you will be in the hands of experts in the field of MPNs. I cant really complain too much but if Id had that opportunity Id of been like a dog wi' two tails. Take care. JR
Jedi thank you so much for birthday wishes. As to your reference to my meeting with Prof Harrison - I was over the moon (still am) that she should find time to see me. I will treasure every minute I promise xxx
Bernie I know exactly where you're coming from with missin the work. . I had to give up my paintin decoratin business as I couldnt lift me ladders off the van never mind go up and down 8 hrs a day. Nor could I roller ceilings all day as I used to. I could still put paper on but even pasting it tired me out. So like you I miss my work mate.
As I worked alone mostly I think for me it's not earning me own brass and providing for my family that I still find hard. Especially with the benefit cutbacks which have so far hit me quite hard. I take my hat off to the peops who manage to carry on working when fatigued. But with such a physical job I found it impossible. And probably like you I thought I would work til I was at least 70. Take care buddy
Hey there bernie. I met an amazing girl at scotsdales ,only 42 ,she had terminal bowel cancer ,has had loads of treatment ,,she gives a talk now and then on juicing ,when she was very ill she tried hard to use natural remedies with her doctors medication too,
She amazed them and is now doing well ...vegetarian ,no alcohole ,but it's keeping her well .she is a one parent mum 3 kids ,,now growing veg in raised beds ,outside the building ,.shes coming to my get together day on the 20 th , Just wanted to give you some encouragement diet really plays a part in our recovery ,I reckon ... Xxxx
It makes sense to me not to feed my spleen with toxics ,,all I know is its working for me ,so why not share ..all you can do is suggest ,, Don't insist ,, If we can help each other that's ok. I'm always saying , I love it when a plan comes together ,, Xx
Thank very much, I am still in a bit of discomfort, but its not to bad. I dont like taking painkillers. so some may say, Its my own fault, but i dont like hidding pains, I would rather have them sortted out.
Hey Buddy Cheers for the acknowledgement you posted to me regarding my response to the newly diagnosed peops. I hope it passes and you start feeling much better without any intervention. Im with you on the painkillers as I do my level best to avoid them. Had a check up today after my first month on Rux and my white cells have come down ok but also my Platelets have dropped quite a bit. So dose adjusted and back in a month. Happy Days for me as I have so much to do between now and then. Take care Bernie.
Its just credit where its due, ITS good to hear your ruxolintinib, is working for you. Did you get headaches,
mine was so bad,I was in two minds to whether, to carry on taking it or not. my spleen did shrink, but the headaches were just to bad, i thought my head was going to explode. my heam. dropped the dose down, from 20gm to 15gm The headaches stopped, But my spleen, enlarged again. so i did have to go back onto 20gm, everything settled down, for a while, but i seem to have gone backwards again now,
the 18th cant come soon enough, Anyway lets not dwell.
Not had any real adverse effects so far Bernie - I was very apprehensive about headaches or just not getting on with the new drug but I seem to have transitioned well. Thats not to say things could alter at any point but Im optimistic. Im now on the 15mg tabs which I find easier to swallow and hopefully my platelet level will come back up. And I have now stopped the Hydrox, a real milestone after 7plus yrs. I raised a glass to that. Cheers for now my friend - it's pill popping time.
Hi there JR. Good to hear things are going well on the new trial drug ruxolitinib .its amazing how much better you feel in a short space of time, I think the fatigue is just the worst thing on hYdroxycarbamide .I found it so difficult to think straight,
I take 2 tabs morning 3 tabs at tea time ,, the other good thing for me is I gave up my arthritis tablets after 6 months ,my joints are not so bad or swollen ,my healthy eating is a way of life ,I don't buy the dairy or meat products any more ,I even bake .( this is new to me) its amazing ,after 30 years my husband got the wife he wanted , occasionally gets to undress me again ...... Keep twinkling ....x
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