Hi Friends, just back from Manc Royal and thought I'd post an update. . Had a further Chimerism test assessed over last week or so using blood taken from me prior to transplant which basically shows how much of my sister and how much of me are competing for supremacy within my little bod. .
Unfortunately by now there should be much more of my sisters cells pushing through and dominating mine. But there aren't. So essentially there is too much of me in the mix, which can mean the new graft isn't strong enough to overpower what's left of me. So as I'm now off my anti rejection drug in an effort to 'free' my sisters Stem cells in the hope they go beserk, we are giving it another couple of weeks to see if things improve dramatically and if not I will likely have a top up of sis's cells to force Graft Versus Host Disease.
Also my white cells have dropped out a tad so I'm to inject myself in tum with Granulocyte -colony stimulating factor (G-CSF) , , to try and boost my count. On the plus side my Platelets are up LOL.
So honestly , not the best news, but though a tad down I'm not out and I'm still optimistic that things are going to come good though it may take a wee bit longer. Still got the gouty foot but it hasn't been too bad, and is a side issue in the grand scheme of things. .
Cheers for now , Chris x
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Sorry to hear things not going aswell as hoped. You are in good hands and sure they will be doing whatever is possible to get you on track.
I think what you have done by posting on here is so good as im sure most people including myself have no idea what the process entails. Im keeping my fingers crossed for you.
Thanks Paul, yes in good hands my friend, and as you say there is much more to this job than meets ze eye. . Cheers for your concern and best wishes. . Chris
Sorry to hear things not going quite so good. You are following just what my husband was going through this time last year. As I have said before it was a really rough time but now 18 moths post SCT now things are looking up. So keeping our fingers crossed for you. I think we may have seen you in clinic last Thurs, recognise your photo. Wishing you all the luck in the world.
Thanks Lynn. . You should wave a twenty pound note and I will spot you immediately. . It sure is a roller coaster even when it goes relatively well. . I feel like I'm on the big dipper at the mo. I'm glad your man is doing well after a tough time. Many thanks. . Chris
Awww flippin heck Chris not what you wanted to hear, still I'm sure its only a setback and hopefully you will be back on track soon. These processes seem to take so long it can feel never ending but before you know it, you'll be looking back on all this. Keep strong x
Yes Indy it can seem a tad merry go round at times but I'm still confident I will get there int end. . I'm not a giver upper but I am a realist and know that with Myelofibrosis you got to battle hard for a good result. Some of my issues may be down to my uber spleen, which isn't as large now. Thanks for your reply. Chris
So sorry to hear this Chris. After all you've been through I'm not surprised you are feeling down. I do hope that things start to improve for you soon. Take care xxx
Hi Jazzy , Im a tad down but I wouldn't be human if I didn't react when things take a bit of a downturn. . However I usually bounce back with knobs on !! Cheers for your reply. Chris x
Don't get down and depressed Chris,you are strong minded ,you will triumph over this set back.Keep strong we are all with you ,very best wishes from a very sad France just now.Keep fighting ,keep positive ,it's got you this far,your strong determination.xx
Thanks Inca, yes I'm very sorry about the events in France, it could so easily happen here. Just innocent unarmed people enjoying their well earned leisure in very ordinary places. My wife and I observed a minutes silence this morning in respect.
You know I sometimes overlook my resolve which has gotten me thus far and need a nudge to remind me, so many thanks for that. I seem to have pushed my hospital stay experience into a closet in my mind.
Hi Chris. So sorry to hear your news, but as always despite everything that has gone on in the last number of months, you STILL seem to be managing to keep positive. That takes guts. Please God it is just a blip and all will work out - I'll keep on praying for you. Sometimes we all need a bit of 'divine intervention'! Keep your wit and keep smiling. Janice
Janice you're so right about the 'divine intervention', , who knows what might just give one the edge. It takes alot to take my smile off for long so after a good kip tomorrow's a brand new day. . As for the wit, well it kinda can be mood driven but I reckon you can find humour in most situations if you're that way out. . And I often do. Cheers Chris
You know me too well Helen. That's precisely what I aim to do. But it's only part of the story and will need the consultants expertise in transplant management to try and force things along within the margins of risk. .Chris x
Thank you, Chris, for sharing your situation as it is now. It's disappointing to hear that things have to be changed in order to give your body the best possible chance. But it's good of you to let others know that the business of a transplant is no walk in the park. And that's why I have the greatest admiration for medical staff. Their job is to work out how to steer you forward and reach the desired goal. And you, Chris, have a lot of guts and determination to get through the tough times by accepting and dealing with them, then turning your positive mind towards that same goal. Always sending out the best thoughts for your successful outcome. Keep your eye on the prize 😇 Jeanette x
Well Jeanette reckon it's only fair to offer up a balanced view of the way things are as some on the forum might have to follow in my footsteps, not to put anybody off but to inform of the process and give an indication of the resilience one needs to see it through. Keeping my eye on the prize is good way to describe the reason I plumped for transplant and I will have that firmly in mind throughout what's ahead. . .
Hi Jane, , my sis was a wee bit tired for a week or two after donation but owise ok. . If you have any concerns or questions don't be afraid to ask of me. . Take care . Chris
Dear Chris - I think as we get that little bit older it takes a little more time to recover - especially with an event as important as this one. Could be some sibling rivalry going on - as you say competing for supremacy! I am sure you are getting plenty of rest and good food to build you up and we are all rooting for you. You are in excellent hands with Manchester Royal - absolutely the best in the North West. Keep posting - I am always looking out for you. Take care, Sue xx
See what the next couple weeks brings Sue and ze old Biopsy results of course. . The peops at MRI are all fully committed to getting the best outcomes for everyone, some take a tad longer than others. . .Cheers Chris x
We'll be cheering on your sister's army inside you Chris. You have been through so much with great fortitude, keep it going. Cheers too to your sister for raising that little army for you to fight for your health. We are rooting for you. Love to u and your sisterx
Hey CrazyD thanks for your lovely reply there, I think of it as my sisters Golden Army. All they need is a little more encouragement to go into battle. . . Hope you are well. Chris x
Aye well John what can I say cept if you actually take your life in your hands driving a 2cv then you'll be fine with the SCT. . . I wish you all the very best with it and should you want to ask anything of me please get in touch. . I'm not going to soft soap you and say it's an easy choice but it's very do-able. . Have an enjoyable Festive period and stuff your face at every opportunity. . Cheers Chris
Sorry that your results are not as good as you hoped for, or all of us come to that. I guess that there was always going to be ups and downs so you must be due an up!
Keep well, stay positive and remember that we are all thinking of you. Love Mel xx
Cheers Mel. . You're always positive and you're right about the ups and downs, I expect a few real challenges and hurdles to get over along the way. I will just have to learn to jump a wee bit higher 🏃. Chris x
Hello Chris Really sorry to hear things are so difficult for you at the moment, our Doctors are the best and hopefully you will soon be going uphill. Take care .Gill
Keep your chin up, my Friend. So sorry to hear that results not as good as hoped for. I don't envy you the self injecting. Been there, got the t-shirt but I guess it's ok when you get used to it. Here's hoping your next bulletin gets us all cheering and gives you and your family a fantastic Christmas present. Still many positive thoughts coming your way. Xx
I've no problem with the injection business Beetle. . It's simple enough and I've got used to looking at needles after all these years. I'm hoping that the next few weeks will deliver an upturn. . Take care. Chris x
Hi Chris sorry things are going a bit slow but stay positive as always - thinking of you
Thank you Caz, I'm still fairly upbeat and intend to stay so as this type of thing really sticks the boot in if you show too much weakness. . Swine !! . Cheers Chris x
Hi Chris - sorry to hear it's harder going than you hoped but let's hope this is just a little bump in the road and something you will very soon be able to look back as just a nuisance. Keep us updated and look after yourself x
Thanks Lesley, , yes I'm hoping it is just taking a wee bit longer than usual for things to kick off within and I will yet see a result in the next few weeks. . Hope you doing well and your family are all well. Chris x
Hi Chris- I'm sorry to hear things are difficult just now- but the fact that the Drs have a good plan in place to handle it is good. Its always good when there is a plan B, it sounds like a really well thought out plan too.
It must be hard to be cheerful though and I was wondering how you are feeling from the drugs?
I'm sure everything will work out. Thank you for keeping us updated, I'd been wondering how you were doing and hoping you were doing okay. With lots of good wishes for the next step Chris.
Thanks Jean, , the drugs do take the edge off your outlook as I'm sure they contribute to overall tiredness, fatigue. . The Colchicine tab for my gout is a nasty little beggar for its diminutive size (reminds me of me !!). . But I'm getting away with not having to camp in the bathroom. And you're right at least there is a Plan B and possibly a Plan C. . , cheers for your concern. Chris.
Hi Chris I'm so sorry to hear you are not doing so well. It's not surprising you have been feeling down and that's ok, it's allowed after what you have been through, but as everyone has already said, we know that you are strong and will pick yourself up before long. I hope the treatment plan B starts working quickly and you will feel better soon. We will all keep rooting for your sisters cells to conquer yours. Take care.
Thanks Karen , I must say you're far from being a devil in my opinion. . Like you say I'm not usually down int dumps for long, but it might have been better to have my transplant timed for a summer recovery rather than winter because it's far too cold to sit out watching the birds. Thanks for your support. Chris x
Hi Chris, sorry you're not quite tip top at the moment. At least the doctors seem to have a cunning plan to help get you on track. I'm sure your sisters cells will soon dominate yours, you can't have got to your age without realising that women are stronger than men, but sometimes we have to go the long way round to come out on top! All the best!
Lizzziep, I hope you're not suggesting I resemble Baldrick in any way or Blackadder should it be 'a cunning and subtle plan'. . . Haha. Love that show. Yes I knew there might be an issue or two with lady cells and I reckon my sis is the stronger of us, so she should be beating my cells to a pulp by now. . Cheers to you. Chris x
Hey. Keep focused and keep that chin up. You are my inspiration on keeping my own ass in to touch when I'm having a crap time. I hope you are ok though and in time we can have a celebrating drink xxx
Hi Karen, , yes sometime soon there is a beer or vino with my name plastered across it. . Hope you're doing well there . Chris x
Hi Chris , yes you are an inspiration for sure , And cheers up the rest of us on here dispite your own battles , i wish you well and pray things turn around for you ,very soon . And you are allowed to feel a tad down now and again so be kind to yourself you take care and most of all , keep your spirits up ,.... soon be Christmas ! drinkies no doubt best wishes Holly x
Hi Holly, thanks for that, , I will need to be much better before any alcofrol passes my lips !! Such is my resolve to give myself the best chance. BUT I will likely take a small lighter alcohol drink at Christmas when I hope to be taking a celebratory drink. . My spirit is still up. Cheers Chris x
Hi Chris
Tried to send a reply to you this morning, but my brain obviously went walk about as forgot to charge my I pad and battery cut out mid flow! Sorry to hear that things not going as well as you / dr's would have liked. I have everything crossed that now you stopping the anti rejection drugs your sisters cells will be released and start to take off. Should happen as you know how we girls like to run the show!
I am not surprised you have felt a tad down but so pleased you are able to retain that fighting spirit. Make sure you get plenty of rest as you have been through such a lot lately. Glad you keep us all updated, we are all routing for you. All good wishes to you and yours Lizxx
Thanks for your reply Liz, it's very frustrating when you formulate a decent response and something happens so you lose it. . Ah well such is the price we pay for our technology. . And you don't have to tell me how much you ladies like to run the show, , I've had it most of my adult life, some good some not so. Cheers for your best wishes. Chris x
Hi Chris, you continue to be inspirational to us all and v conscious of all the huge effort you are making every single hour of every day to keep your chin up and to keep fighting. And, as ever, the loving guy who cheers everyone else up too....may your sister's cells triumph, may you be always surrounded by uplifting folk, including the medical team, and may all our prayers be answered for your health to be restored sooner than anyone can guess. Best regards, Tinkerbell13
Gee thanks for your heartfelt response Tinkerbell. . Your name always makes me smile inwardly because our Grandaughter when about 5 discovered jokes and said to me "hey Grandad what do call a fairy that doesn't wash?" When i said i didnt know she got great pleasure shouting in my face "stinkerbell silly". Kids !! Actually you hit the nail ont head about the sheer amount of effort it takes to get through the day, tis very tiring. Cheers for your prayer and best wishes. Chris
Every single time I read one of your comments, I smile, (except, of course, when concern and sympathy are paramount); you have so many endearing qualities and sure you are an adored grandfather. My mother called my brother Peter and me Wendy and I spent my early years trying to fly....seriously! even thought of trying out of an upstairs window one day, but something (a real fairy, probably an angel) pointed me to jumping off beds instead! Bless you, dear Chris, you are very lovingly held in so many people's prayers and thoughts, surely your family too. Tinkerbell13
Hi Chris sorry to hear that things aren't as good as you had hoped for but keep smiling with that cute face, you are beating this, these are only little ripples in a big sea and the waters will become calm again. You have had fantastic strength up to now and we are all here for you. Loads of hugs and best wishes. Aime xx😺
Aime you making me blush girl !! I'm sure I can continue to muster fantastic strength to see me forward. . I've amazed myself at times, I recall in hospital I was sick with chemo and they presented you with about 12 tablets to swallow AM/PM and I took AM and promptly brought them back up. So int evening I was sat looking at em with a mental block, I felt I couldn't carry on taking them. After a few minutes I sorted them into size order and took the first 6 larger ones. Kept em down. The 6 smaller were then easy. Hugs back. Chris x
Morning Chris, you can see by the amount of replies how much you're thought of on here - I hope, too, you can feel the love & support which emanates from each of us. Your resilience & strength is just incredible. Here's hoping things turn around for you and the top-up isn't going to be needed. Stay strong & well, much love Poll x
Hi Poll , , yeah I thought after all I posted there may be a few responses so thought I'd reply to each, , what a mistaka to maka LOL. . No I thought this time everyone who takes the time to post deserves a reply. . You're right I am very aware of all the love, concern, support etc that I get from the forum and believe me when I say it makes a huge difference and I appreciate all the kind heartfelt words from everyone. . Thanks Poll for your support. . Chris x
Hi Chris,same as Polly P V ,I have just read all your support and hope that you can feel all the vibes of support,love and prayers from us all.Hope too you feel a bit better today.Your ears must burn,I tell my husband of your progress each morning while we have a cup of tea in bed,we are awoken early by the dogs pushing the bedroom door open,begging us to get up! Some mornings I struggle to do just that,you are a great 'push'with your strength and cheerfulness in the face of adversity.Keep strong,you are needed by us all! The very best to you and your family .xx
Haha Inca, , my wife and I are having a 'lazy' one this morn and our dog is becoming restless for us to surface and attend to her tummy needs, greedy little Staffy. . I overslept and my early cuppa is stone cold. . I feel ok this morn but had my flu jab yday afternoon and wasn't sure if it would affect me, doesn't usually. Nurse popped to house which was very good of her. High risk job sitting in docs waiting area, tis only tiny and peops are coughing, spluttering, snivelling. . .
Inca what you see is very much what you get from me, I'm not 'false', I try to keep cheerful and even managed humour during some quite difficult times when in the hospital. Helps me through. Don't worry Im feeling them vibes big style. . . Many thanks for your lovely sentiment and the best to you and yours. Chris x
No logged in for a few days so just seen your post - thinking of you kid not an easy road this has been for you and this is another turn in the road that was not hoped for - keep going it may well turn the right way yet - you have had excellent help and have done absolutely all you can to assist the process and your courage and spirit during it I touched us all - you have a grand community of unknown pals here rooting for you so just take a few more steps and here's hoping big time for the right end destination for your treatment. All the best kid. Jill
Hi Jill, , here's for that, I fully intend to carry on regardless and in a positive way. I'm in a pretty good place mentally and feel strong, ok it's a setback at this stage but I may be a 'late 'bloomer'. Let's hope so. I keep checking for any visible signs of GVHD. . But nothing as yet. Hoping to see a minor rash o arm, leg or face. . This will signal that something is kicking off on the Stem Cell front. You're absolutely right by the way -this is truly a grand community. I have learnt a lot about human kindness since joining a ways back. . Thanks for your best wishes. Chris.
Chris, more positive vibes coming your way from Edinburgh. I wish I was your neighbour. Even on your bad days, you have such a positive outlook and your wonderful humour reaches out to us all. Stick in there Mr, a woman always gets her way. Bet your sister's cells are in there putting on the tears to get their way. lol.
Haha , , I can just imagine that going on inside of me , and my sis can be feisty I reckon like most ladies when their dander is up. I like Edinburgh Anne it is a wonderful city, I know it has its problems like any other, but I love the architecture and history. I appreciate the compliment but I think you're better off in Edinburgh than being my neighbour here in Blackpool. Though it would be good to get the derelict house next door gutted and habitable again. . . Thanks for your reply Anne. Chris x
Aww thanks Natasha, , well I get such good support , how can you sit feeling sorry for yourself when there are many folk including the very young, much worse off than you are and there are good peops rooting for you. As you might guess I'm not one for maudlin, I have life and want to get on with it. . Hope things are going well in your life. Chris x
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Treatment choice for ET
SCT Journey update No.9
