Good luck. I really hope in my heart it all goes well for you. I will miss your wise words and upbeat comments. I want to see that JR Phoenix rise and I will be waiting. Take care xx
Oh JR, what a shock. I don't know what to say other than Go for it and stay positive. I so wish you well, and if the support for you on this forum is anything to go by you'll be fine. I'm sure we will all be rooting for you.
My very very best wishes, you're a lovely man who has given everyone such support and me personally a few belly laughs.
Everyday is a challenge in the life of a MPN patient, but everyday is also a day of hope. Hope that the inevitable will come later rather than sooner, hope they will find a cure before your inevitable and hope that you can deal with what comes with the inevitable.
What I am trying to say is never give up on hope. You have the love of people around you and I am sure the love and support of your fellow Myeloproliferative's on here.
So sorry to hear your news JR and all in verse too, never mind Willy Wonka, what about Willy Wordsworth eh!! All the best, everyone on this forum, I`m sure, will be routing for you and your super sister. Good Luck, Sue
So now my wayward son we see the true colours ,Not quite the post we are used to from our cheery joker .this one is close to home ,is it ?? You know don't you ,the great wave of love and caring that comes your way from all of us on this Internet buddy group .we are all of us on this bumpy ol path with you .so maybe we understand your fears and hopes ,closer than any ...we share all your doubts ,but let me tell you of the brilliant people we have met and chatted to in London forums ,they too have gone through this radical treatment .in clinic for a time ..but it works ..when they stand up to talk to us they beam ,,with renewed love of life .. That's you JR .. You too will come through this next hurdle .and I will be right here to support you ,just call on me anytime ,,you know I'm just a click away ,,be strong sunshine ...twinkly ...xx
Hi JR I am so sorry things haven't progressed well, but if anyone can get through this its you. You have a positive outlook and a wonderful sense of humour, and that's what will carry you through, along with the support of your loving family and friends and of course it goes without saying this caring supportive forum. I enjoy reading your posts they are witty, intelligent and down to earth. Please keep positive and don't stop being strong, you will get through this, you are an inspiration. My thoughts and well wishes are with you. Indy xxxx
Well, Billy Shakespeare had a few things to learn, didn't he? I'm really sorry to hear your news. Keeping everything crossed for you. Drawing on that Jedi force.
Hi Jr sorry to hear this , but stay strong and positive , i wish you well and hope everything turns out well for you ,as im sure it will , you give lots of encouragement to others ,now its time for you to be encouraged by us as your friends along with your family at home and your sis ,All the best over the coming weeks best wishes and lots of prayers x
Hey thanx you lovely friends- I'm here wi tears running down my cheeks partly for me and partly for my mate who age 55 took his life last week, I'm gutted to say the least. Such an irony that I'm desperate to save mine . . . . I'm very emotional which isn't quite the 'tough guy' image I wish to portray. . I'm also very touched by all your kind and heartfelt comments even though you don't know me. Just want you to know I'm well up for this and I have my long suffering wife and family to stand by me whatever happens.
I just need to chill my beans a tad and hope the beer is in my drip.
Sending you huge virtual hugs and loads of positive vibes for a brilliant outcome for you and hoping to see a post that says Still I Rise .
Helen x
You have every right to feel how you do, but already from your post I can tell you have the positive mindset and are indeed a true fighter! Positive that this will be successful for you.."you were given this life because you are strong enough to live it" - a great quote. I am sorry to hear your friend who took his, felt he was not strong enough.. I know you will fight and win this battle - I will be sure to be thinking of you and will put a prayer in my healing cards for you!
Good luck to you. You are ridiculously witty to be able to put such tuff stuff into prose. Keep your humor close- I have found it helps a lot when times are tough. Will continue to wish for the best possible outcome....
I am very sorry to hear that your MF has not responded to the Rux. I really wish you lots of luck with the SCT. I hope it all works out and that you come out of this like a new man ! Take care, you know where we are.
Wishing you all the very best. My husband had a SCT 15 months, and after a few real scares along the way, I now feel I have my husband 'back'. The team at the MRI are fantastic and you get lots of support along the way. Good luck.
I wish you the best of luck, I don't know a lot of facts about SCT, but what I have heard is good. It might be a bit of a rough road for a while but at the end of it you'll be laughing!! Perhaps you could ask them to out a few Yorkshire stem cells in just for general improvement!! May the force be with you! XX
I wish I were so able with verse, but any effort of mine would make you feel worse. But I truly wish you the very best and we will look forward to news from you before long
Sorry to hear the Ruxo is not working for you. There is a guy who goes to the East Mids support group who has had a transplant, im not sure if its a Bone Marrow or Stem Cell, maybe they are the same thing? Not sure but hes doing really well.
Hopefully your sister is a good match for you.
I know there are other things on the horizon, Imetelstat seems to be getting positive results in trials so maybe you could also look at things like that, but on the other side if your doing ok right now maybe now is the time to go for it with the Stem Cell.
Good luck...fingers crossed for you
Paul
Hi JR Sorry to hear your news and I'm sending positive vibes to you, your sister and all your family. All the best with the SCT and then onwards and upwards you are always a great support.
In the short time I have been on this forum you have been such an inspiration to me. I look forward to your funny posts. I hope with all my heart that the SCT goes well for you. I just know you will face it with strength and humour. We will all be thinking of you and your family. With much love and hugs, Karen xxx
Here we go JR. That is the risk with the drugs, they work for some and not all, and are not a cure, although some are doing very well. My first ever SCT buddy four years ago had the same experience with Rux and is now 3.5 years out of SCT and doing well, one year behind me. I know people worldwide, and have met many, who are through it and okay.
Happy to chat with you and help you prepare for your SCT and even 'compare notes' as you go through.
It's gonna be tough JR but you are tougher! Can't imagine all the different things that are going on in your mind at the moment but we are there for you any time you want to have a gripe or a bit of fun. Can't imagine how you are feeling but can be here to try and pick you up on the down times and share the good times x
How on earth did you come up with that? BRILLIANT!
Your poor old sausage, I'm so sorry to hear that things aren't going as well as you'd hoped. What an absolute bugger. However, I feel it in me bones - you'll be fine.
Stem cell transplants work really well, I remember there was a chap at the first London forum I went to who had had one and he had a new lease of life!
Let us all know when it's happening and we can do a collective mass happy good luck dance.
Hi JR. Great verse, I hope to hear lots more as you go through your "being bored in hospital stage". I wish you better and hope your recovery is speedy and that the JR we all know and love is back on his feet very soon. Thinking of you. Mel x
Thank You so much for your loving and supportive responses. . I'm very optimistic as my sister is as close match as you can get. I have only one sibling and it's a one in 4 shot they will be compatible so how lucky am I on that score. . She will have injections at home for 4 days and go in to Manc Royal on the 5th day for the last one. The stem cells will spill over into her bloodstream and they will hook her up to a machine that draws her blood from say right arm separates the stem cells and puts the blood back in her other arm as I understand it. Then the cells will be put in my chest line after my marrow is killed with chemo and they miraculously find their way to my bone cavitys and hopefully regenerate my life, immune system etc.
That's the plan. Once again many many thanks it means so much knowing you guys are with me and I can call on you, which I no doubt will. . JRX
Hello my lovely friend, well that's some news I must say! I am also sending you my love, support and best wishes to you and your amazing sister. You are strong and positive, you will get through this. Maz x x x x x x
I'm so sorry to hear your news, my best wishes and thoughts are with you and your family. Try to stay strong and positive and good luck with the SCT. x
Hey JR so sorry to hear that the Rux not working for you, that's tough news but pleased that you have an alternative albeit not an easy one. It is good news your sister is a match and pleased to help you, what a great gal she must be.
We have not met but I sense an underlying strength in you and with that, your positive attitude, good lady wife and family, you will get through this and come out the other end smiling with that fantastic humour intact.
You know we are all here for you the way you are always here for us. I don't know much about SCT so can not help with any practical advice but I can always listen if you feel like talking or having a moan. you must just focus on you and taking care of what you need but if you get a chance and feel able let us know how things are going. I am thinking of you and rooting for you.
Remember, as we say in good ole London, keep your pecker up and there is lots of life in the metaphorical (hope that's the right word!) old dog yet. Liz xx
Hi JR-- I'm a little behind all the others (its that darned Canadian time difference) but my message is no less sincere as it makes a slower leap through cyber space.
Your cheery words have spurred many of us on in the past, so I'm joining all the other peops who are standing shoulder to shoulder to cheer you on. I read Chris' story of his stem cell transplant, so I know the road ahead is tough- but it is road that a Jedi Knight of your calibre will be able to traverse.
So I'm cheering you on from the middle of the prairies in Canada, and- looking forward to keeping up with your story.
You have of course set a dangerous precedent - we shall be naming you poet laureate of the forum!
I wish you all the luck in the world. You are a stalwart on this site and have helped, entertained and been there for us all and I am sure I speak for everyone here. Good luck. x
Hi JR have just read your post what a wonderful attitude you have towards this awful illness , my husband has now run the course with ruxolitinib after just over two years and is now looking at radiotherapy to hopefully shrink the spleen ruxo no longer working and his platelets keep dropping so pleased your sister is helpful for you .also his brother same age as you had pv now MF is now in Plymouth hospital undergoing stem cell treatment so am praying for all the peeps on this site who are very helpful with all. The comments on MF God bless kisses wife xxx
Hello JR, just wishing you all the very best with your SCT, having you sister as a good match is excellent news. So sorry the drug did not work for you .Take care. Bye Gill
JR , I'm sad to hear this , you really are a class Bloke , this is just a hiccup I'm sure you will be back in a flash with your riddles making us giggle , ,in no time at all
Oh blimey JR, what a turnaround. Here we all are, blithely bumbling along then whamo! it all changes. Reading between the lines of your brilliant prose. I sense the scariness of it all is there with you, and understandably so. Lots of unknowns to face but your 'knowns' are many. How amazing to have a sister able to provide the much needed cells for you - she is surely an angel in training. How wonderful this procedure is, that it's available to you now when you need it. How blessed you are to have the support of your loving family who you often refer to & the love of which is encapsulated in your little pic accompanying your name.
Some people say we are only six degrees of separation from everyone else on the planet-know in your heart JR that that separation is minuscule when it comes to the guys on here because we're all carrying you in our hearts throughout this tough time. Stay well, much love, Poll x
You are a brave and positive man who whose wise words have helped so many of us. All the strength you have given me during my short time on the forum I return to you a thousandfold with love and best wishes. Ruth x
Hey Guys - Im really blown away by all your supportive responses and the love and kind thoughts that radiate from them. I have messaged each one of you , well at least I hope I haven't missed anyone otherwise this post of mine would be half a mile long. . I'm feeling good about undergoing the SCT as the time is right and I feel I have no other option given the specialist advice. But the final decision is mine.
I haven't under-estimated /valued my sisters input to enable this to happen as you are spot on Pam she is an angel. She has been taking me to Manchester so I don't need to drive myself and she has tests to undergo next week. . Once again many many thanks to you all. Love JR X
JR your wisdom wit and humour are a ray of sunshine to us all. The wave of affection coming at you is so genuine and heartfelt. I don't know you apart from reading your posts.....but you are part of our family here ,so with my inadequate words I want to send you love ,hugs and strength for your journey ahead . Your sister is about to give you such a precious thing, hence my tears as I write this. You will have that gift and go from strength to strength.
Lots of warm, tender thoughts and prayers surround you from so many. May moment by moment each and every fear be dealt with... and may your delightful humour, great courage and, above all, your loving family and friends lift you every step of the way...and may the sadness of losing your friend under such tragic circumstances not pull you down but somehow be a stepping stone to a healthy future for you. Kindest wishes to add to all those others. Tinkerbell13
Hi JR, sorry for the delay. I know many of us MF sufferers have SCT in the back of our minds. It's tantalising knowing that it's the only 'cure' but it's still it's a huge decision. I know I shall wait until someone tells me we've gone as far as we can. It is a big thing, but with family and friends to support you I'm sure you will see it through. I think you will be a great help to all us ditherers out there! When you leave your 'prison' you will be able to give us guys a true picture of what it's really like (warts and all)! Good Luck - we are all pulling for you.
Trevor
I think SCT could be the reset button I was thinking about. I've been at a scleroderma conference where one of the speakers was a leading proponent of SCT as a CURE for scleroderma. I know it's for a very few patients and I am far too healthy to consider this as an option but it's in its infancy and looks hopeful.
Hope you are enjoying your Saturday. I'm in England and loving the relative warmth. No need for coats, jackets, extra layers. I like it here.
Hi Jeds. Not been on the forum couple of days so just seen your post - many thoughts and empathy to you - you always give so much support to all on your posts and it is now well time for you to get much support from all of us - yes it may be some tough weeks ahead but you will get to the end of the treatment and as you are in the best of hands we are confident it will all work well for you - the human body has an amazing ability to pull out of its roughest challenges - all your buddies on here are rooting for you so all the very best to you and your little family - you are much cared for on here!
Thanks lawhill - it's all getting very close and the process is 'full on' with tests and bloods and more tests and more bloods but I guess they have to be thorough. . What I can tell you is that if I don't have another bone marrow biopsy in my life I certainly wouldn't miss them. . I'm now taking more pre-transplant tablets than I can shake a stick at. . All the best to you and cheers for your best wishes. . JR
Hi JR, in 2012 I stayed at the leukaemia foundation's accommodation in Brisbane for two years. Yes, it can feel like a prison when you're going through such a challenging time. Humanity is our saving grace, though. People rally around you and are so very kind and caring. I was too ill to have the transplant, but ruxolitinib arrived just in the nick of time. However, I met people at the village who were about the same age as me back then (57), and they became special friends. I watched them on their journey through all those tests you talk of, and I was amazed at their strength and ability to get through the toughest time of their lives. One particular friend told me that he could have given up a few times, but just looked at his daughter's photograph and found that extra bit of push to get through. He was a success story, as were others. Our minds rule our bodies, that's for sure. I will follow your journey and keep positive thoughts all the way. Take care 💪 and stay strong!
Thank You for that re-assuring message my friend. . your 2 years makes my 4-6 weeks look a tad tame by comparison. . I'm up for it just need to shift this niggly cough I have, hopefully the anti-biotics im taking will help.
Im taking in pics esp of my Grand-daughters to give me an extra lift when the going gets tough. Once again thanks for taking time to reply and I hope the Ruxo continues to be effective for you. . I still don't know why it didn't work so well for me. JR
We never know what's right for us, JR, but life takes us on the best course. My time at the leukaemia village and hospital stays did not include a transplant, but I understand now that It was the best outcome for me. I love the idea that you're going to take a picture of your grand daughter in with you 😇 Rest as much as possible. All the best, I will be sending good thoughts...
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Is anyone else like WTF?
Life beyond Myelofibrosis
I would like some advise please
Not like me
ET progression to MF - anxiety issues
