It's been some time since I posted but I keep in touch with the posts. It's part of me moving on in my lengthy recovery. I know from what I see that there are many new Forum members since I was active and that's great because we know it's one of the best sources of information , support and help for the MPN community. It's helped me greatly.
I wanted to give those of you who 'know' me an update of where I'm at but for those who don't know of my MPN story I was diagnosed PMF 2006, had a Stem Cell Transplant in 2015 and am still feeling the effects of severe Graft Versus Host Disease (a reaction to the new cells) . But importantly I'm here to tell my tale.
I'm doing ok as things go. Bloods are picking up as my immuno-suppressant is down to a very low dose. I'm still quite weak in terms of how fit I used to be pre MF but I can live with that and I'm trying hard to regain an acceptable level of fitness. My eyes are extremely dry and a source of much discomfort so I need drops day and night. But this is a small price to pay.
The cataracts caused by high dose steroids have been lasered away but unfortunately the Osteoporosis can't be fixed as easily. But I'm coping fine for now and taking my calcium.
So that's me, things aren't perfect but the MF is gone and I've got a reasonable quality of life which allows me to get out and about most days and be a hands on Grandad.
What I wanted to say to all new members, recently diagnosed and those who are worried about the future in terms of possible Transplant is not to give up hope because treatment and survival rates are improving and my case is extreme in terms of my GVHD but I'm finally getting my life back on track. Happy Days. 😃
Hope you all had a good Valentines Day xx
Regards - Chris
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Hi jedi, my, my, you do look slim,you truly are a warrior! I know you have to be careful with the diet now,does that mean you have to now stop those beautiful bacon butties your dear wife used to cook you? Hope not! 🤤🥓 keep smiling chris. Atb, tina.🤗x
Ahhh Chris our old mate how good to see you post and hear your news - such tremendous progress and looking so so improved to some time back eh kid! So well done and what great news it is to hear the MF is gone, as you say yes the effects of all “endured” are there but how sweet it is to regain some quality of life and enjoy the important things of family - can only imagine how fine it must be for your dear wife, kids and grandkids to have you out and about enjoying family life again - yes a little different than that enjoyed in the past, but precious life that can still be enjoyed and just do your little bit each day to do that eh - you have long been an encouragement and example to us all - well done on such grand progress. All the best Jill
Hi Jill, you're right it is sweet to finally be able to function though I still cherish my wife's devoted love and care, , it's hard to let go !! I have limitations yes , but I adapt to how I'm feeling each day. Currently have a rotten cold which finding hard to shift so I'm a tad subdued. I decided to share things here warts and all and there have been many warts but I'm finally reaching the end of a long tunnel.
Hi Lesley, yes we do know how to party, , after eye clinic I looked like a druggie as they needed back of eye pics so put not only orange drops in but dilating drops too.
Thanks for the compliment, , I must admit it feels good to go to clinic with my head up and a smile and not be the sickest, frailest person there as I was for a long time.
Hello Steve, , always a pleasure to hear from you my friend. Yes the Force is stronger than ever I'm happy to say and I've not been seduced (unfortunately 😉) by the Dark Side.. .
I'm happy to think that my MPN journey has been or is an inspiration to others especially in light of the severity of my GVHD which has provided those in the field of SCT with valuable data which hopefully will ease the path for those to follow.
Hey Chris! Soooo good to see you on your feet! I’m sorry you are still suffering with your eyes but, as you say, a small price to pay. You have been a great inspiration I really don’t think I could be as strong as you have been. Glad you can now enjoy the grandchildren more, I’m sure they benefit from your wisdom and humour.
Hi Judy , as usual you don't disappoint with a lovely response and you yourself are an inspiration on here to many with your thoughtful and caring help. . And I'm sure if it came to hey lads hey (whatever that is !!) you would find that inner strength as I did.
I do try to exert a positive influence on our Grandkids and tell silly jokes but as far as wisdom goes I'm not sure I'm that wizened.
Great to see an update from a fellow transplantee. You have been really unlucky with GVHD but seem to be on top of it and look well. As we both know the prize is life. About time we met so will watch out for seminars in the frozen north unless you get down to the smoke.
Take care
Chris the non Jedi version with the Princess Leia stem cells.
Hi Chris it’s great to hear from you and good to see you looking so much better than earlier in your transplant journey. I am so pleased your MF is gone, and hope you continue to get your strength back. We have missed your funny and inspirational posts. It’s lovely that you are able to enjoy your lovely family. Look after yourself and keep well. Much love, Karen x
Hi Karen, , good to hear from you, it's been a while. I'm trying hard to build my strength up and was a tad better a few months back when on Ruxolitinib but it was never meant to be long term post transplant. I lost my appetite when it stopped and lost about 12lbs since. Although ok I'm struggling to gain any weight.
It's good just to be able to join in and do things with family, not every day but most days.
Hi Chris, looking at your picture you can’t afford to lose more weight so I hope you can start to build yourself up again soon. Take care of yourself my friend x
It's very good to hear from you Chris and to see you too. Well well done. What a wonderful positive attitude you have, such a wonderful inspiration to us all. Keep fighting the good fight. Best Mairead
Many Thanks MPort, , I need to keep fighting as I get reminders that things are still a tad fragile like last night we had a Chinese meal an element of which was a little spicy but I thought nothing of it. However it did for me and I was sick several times during the night. This used to happen regularly even with quite plain grub but is now occasional.
Hi Chris, do you think there is any link between mf and osteoporosis? I was diagnosed PV jak2 +in summer of 2017, started hydroxycarbamide shortly after. Last summer I fractured my spine lifting something and a dxa scan showed osteopenia. At my last haematology appointment I was told I had some fibrosis and teardrop cells, am now waiting for the results of my bmb. My fracture was never treated, just left to heal itself. I have so much pain from my back that I hardly notice the blood problem apart from exhaustion and spleen discomfort. I can't help but wonder if there is a link between the two conditions.
Well Carol it's a good question and I would say very likely, however high dose steroids caused or made it worse for me. The pain I endured when I first experienced it was the worst I've ever known and I was screaming out when trying to move or get up from my chair. So I fully appreciate how your PV could become secondary. I wear a slow release Transdermal morphine based patch to help stave off the pain but it lulls you into thinking you can do more than you're capable of.
My spleen is still huge but alot flatter like a pancake. And parts of it are dead areas after all the treatment.
Dear Chris!! This is indeed wonderful news. A beautifully written report that truly gives me and I’m sure other, hope, since I’ve just started researching stem cell treatments. You and your story are so positive and encouraging. An important tip regarding osteoporosis. Make sure you have at least a level of 60 vitamin D, else the calcium will not be put to work properly. It is unfortunately world-wide mainstream practice to prescribe calcium and not look at Vit D! After 20 years Deficite, my new doctor gave me 20,000 IU daily for 5 weeks. I was up to 70 from 15 and now I take 40,000 IU per week to keep up. Every person is different. I just needed a lot. Many people do. Enjoy your family!! Nothing is more important than the people in our lives! Sincerely, Anag
Hello Anag, many Thanks for pointing that up about vitamin D , I will be chasing that up for sure.
I realised when in hospital in isolation for many weeks just how important family is and subsequently make much more of an effort not to lose touch with loved ones for very long.
Chris, I was prescribed Calcichew after my back fracture. It's calcium with vitamin D in the form of a lemon flavour chewable tablet. I was prescribed twice a day but had to cut it down to once as they made me constipated and nauseous. They are quite nice so are easy to take.
Hi Carol, luckily, I didn't get constipated. With all the chemical meds we are consuming, it’s really good to try to go as natural and clean as possible on all the supplements, foods and cosmetics, that our bodies get. Getting rid of almost all environmental toxins that go in and on my body fixed my liver, spleen, lymph nodes, cholesterol, incontinence, water retention, and more. I was able to reduce my Anagrelid and my thyroid hormone, which is now bioidentical. Unfortunately, the market is absolutely flooded with things that make us sicker. Cheers.
Great to hear from you. So glad things are moving on so positively. Enjoy! However you might feel, you look fantastic. Maybe it’s the subtle mural? Little Shop of Horrors and all that. 😂. Wishing you and your family all the very best.
Thanks Ebot, , There's a blast from the past with Little Shop Horrors , , you made me laugh with your subtle mural description, I guess it's to make clinic a tad less daunting.
So glad to hear such a positive message from you Chris. We all know you have not had an easy time of it and to know that MF has gone must be a great relief.
I am about to try a break from Ruxolitinib to see if it will be prodded back into action for me. I have a cough at the moment that I have to admit is leaving me exhausted 😩! I’ve not had one like this in year and it’s knocking the stuffing out of me a bit. I have to laugh because getting up, dressed and breakfasted is leaving me anything but ready to face the day!
As you say there are many new folk here and they have certainly come to the right place
Take care my friend and keep going onwards and upwards xx
Jan my friend , lovely to hear from you. We could get together and practise synchronised coughing as it's a fortnight tomorrow for mine. I got some antibiotics at clinic though not keen on taking them . They are huge and at first I thought they were suppositories 😂.
I hope you improve soon as it's so draining.
As you say Onwards and Upwards and I really feel I'm turning a corner and starting to live life again.
Great Chris...how positive and good in yourself you are,
Been wondering how you were getting on,so many new people on site now,I haven't been looking much. had a bit of a bad time ,back in hospital,however new Meds now ,Ruxolitnib,few dramas and lots of blood tests....Reading you today will be a big boost for us all,you have kept going thru so much and now can do normal days.
Sending you and your supportive family,love and very best for the future,
By the way you look marvellous with the flowers!!! Keep it for a Xmas card!!
Thanks Sally, though it sounds like you've been going through a rough patch and I hope things are now on an even keel.
There aren't many photo opportunities in clinic and I thought that was the best backdrop.
I have bumped into a few folk who haven't seen me for a year or two and they have been amazed to see my transformation. . I sometimes find it hard to believe myself.
I am new to this site and It seems that I’m one of the few people who live in the US who contribute. It is great to read that you are doing better. I haven’t heard of Stem Cell treatment for MPNs in this country. I hope you continue to do well.
There are lots of stem cell transplants undertaken in your country for various conditions including Myelofibrosis. I have several transplant buddies there.
Thank you, Chris. I don’t have MF, thank goodness. But I’ve had ET which has progressed to PV for over 11 years. I just worry that my hematologist has become complacent, even though I really like him. I take 1000 mg hydroxy and 10 mg ruxo (we call it Jakafi here) but my numbers seem really out of whack lately.
Hi Cindy Thanks for your reply. As my friend Chris says there are many Stem cell Transplants done in the US . I recall when researching that much of the data available is gathered in the US mainly due to the population size as it gives high numbers in drug trials etc.
One of the Centres of Excellence (my words but it is I'm sure) is The Mayo Clinic in Rochester Minnesota. Their website is a valuable reference point.
That’s great news. Truth is, the FDA is not keen on allowing stem cell therapy and have limited the possibilities. It will do a job on Pharmas profits. A few states have managed to overrule and allow more stem cell techniques. Texas, for example. There is a stem cell docu series with many famous doctors running at the moment. Episode 3 can be viewed for the next few hours and episode 4 tomorrow. Anyone can sign up for free. stemcelldocuseries.com/epis...
Thank you,Chris. I really appreciate the information. I don’t think I’ll be needing it anytime soon but I always want to know my options, just in case. I hope you keep improving.
Great to hear from you Chris, you are really looking good, very slim I must say, makes you look a very young Jedi and no more of a reject 🤪 sorry to hear that the eyes are still dry, I expect the drops help.
Hi Jean , , , or as I prefer, Superwoman ! Yeah not so much slim but skinny as it says in the back of those jeans I'm wearing, trouble is even straight legs look baggy on me. My tum is much flatter since my spleen reduced in volume and I lost 12 lbs after coming off Ruxolitinib a few months back.
I don't know about looking young as my wife says I've had a hard paper round. Doing ok at 58 years young.
The severe dryness is sometimes hard to bear as drops give only temporary relief. I rest my eyes quite a bit and wear shades alot.
You look absolutely tickety boo, and well done you for being so jolly positive after all you’ve been through. You’re amazing! It’s such good news that the MF has gone ( not so good re eyes and knackeredness, but as you say, it’s a small price to pay)
All well here in the Lakes, and when you feel up to it, lunch is still on offer....
I’m fine, the hydroxicarbamide is causing lots of brown spots to appear on my face and arms ( I’ll be one entire large brown blob one of these days 😂) and my gums bleed which is a pain. The dentist tells me off for a bad hygiene regime, cheeky bugger. If only he knew. Probably end up a brown blobby toothless old crone come to that)
As you say, it’s a small price to pay, I feel absolutely fine.
AND AND AND - guess what! Am now a granny to twin boys Thomas and Jacob. Wonderful. 3rd round of IVF so really special. They were 6lb and 7lb, poor Claire at 5ft 3 ins looked like a Zeppelin balloon.
Anyway, so lovely to hear your news.
I don’t often use the site these days because it’s a pain to keep logging in all the time.
Pecker up ( am I allowed to say that - someone told me it was rude )
Anyway, my dear old ma says it all the time at 97.
Hi Louise , , it's pleasing to know you haven't changed inwardly even if you are doing outwardly. You're a holler.
Fantastic news about the twins Thomas and Jacob. Wow. Everybody must be over the moon , how special gifts of life are they. I got an image of Claire shaped like a Zeppelin balloon. The girl done well for sure.
I would be careful who you use your 'pecker up' phrase on as it does have a certain connotation 😂.
Lovely to hear from you and I would love that cup of tea sometime.
Hello Chris I always like to know how you are doing,Its been a tough hill for you but you always continue to climb and continue to be a huge inspiration for us all.I hope Simon sees you post,and all the others who have been through Stem Cell transplant As always take care ,and you family, Love Gill
Hi Gill, , I'm still climbing and to some extent maybe always will , like my own Everest. I feel I'm well,on past base camp though. Not everyone is as lucky as I've been or as unlucky in equal measure. But great minds are working hard to make the Transplant process less of a lottery. I know a good deal of data is gathered from a case like mine.
What wonderful news on the MF front, I'm so very pleased for you and sad, that there was a price to pay the piper... Eyes and Osteoporosis ! I'd rather have Both as opposed to MF...
You gave me some excellent words of wisdom 9 months ago in a PM..
I remember those words regularly,
you said, " Don't waste time worrying about the day you may never see, get on with living"....
I keep you as an example of how to
navigate this dilemma of SCT & GVHD, if & when I need it..
Had that long talk with the SCT Team, wow they don't sugar coat it.. But having spent my whole Career Nursing, I always prefer the Truth...
Come May, it will be my First Anniversary of knowing I have MF...
And those words of yours have helped me many times, I am grateful for that wisdom....
Enjoying the grandchildren is a wonderful thing to share with your wife and family....
You are Inspirational and to know you have afforded the medical profession knowledge of how you responded to SCT & GVHD is so very special....
Well Mary , , Im pleased you recall my advice because as I likely explained at the time I was told 3-5 years from diagnosis to transplant and that was a year into my MF. So instead of trying to push it aside and crack on with my life whilst relatively very well I spent too much time doing the opposite. It was only when I past about 6 or 7 years I realised how much precious time I'd wasted and holding back worrying about something over which I had little control. I didn't want you to do the same. Though easier said than done for sure.
I learned to embrace my MF eventually but it got to a point where I'd had enough of living with it and wanted rid. I did have the bonus of a 10/10 sibling match.
Let's hope it's many years into the future before you reach that point.
Good to hear from you Brave Jedi, I was wondering how you were doing! You look well on the photo. Really pleased you are continuing to improve. Your sisters stem cells must have been getting their own back for what you must have done to her when you were young, I'm glad they're starting to forgive you! Hope your health continues to improve, even though you are still from the wrong side of the Pennines!!
Hi Lizzie, , flattery will get you everywhere !! I'm not sure my Sisters cells will be too forgiving, , what made my GVHD so wretched I don't know , but perhaps it was divine retribution. I was a naughty brother when we were kids.
There were some guys working in our road last week and they were from your side of the big hills. . .
Speaking of road workers, we had a water leak and the men who came to repair it were from Morecambe!! Have shovel will travel! My platelets have been on a level for a few months, so pleased with that. Hopefully they will stay like that.
Hi Mel, , ,Thank You. As you can see I'm getting there, just need some weight gain and muscle . I'd like to enter Britain's Strongest Man so I've a little way to go yet to match up to Eddie Hall.
Hello Pam , , always great to hear fro you and pleased things are going good your end. I still rely on my devoted wife (what man doesn't? ) and we always celebrate Valentines. . It doesn't have to be a special occasion for me because I prefer spontaneous acts of love. So when I saw some lovely flowers today I got her some.
Great to read your post Chris and very happy to hear you are overall doing well. You are a big inspiration to us all on this forum & I always make sure I read your posts as I do consider you a ‘wise one’ in the world of MPNs! x
Haha I don't know about that but Thank You. I did alot of research and have learnt a great deal from my experience, most of which I wish I never had to find out 😃. But I'm lucky to be able to pass on a few nuggets here and there now and then.
I decided to do a search this morning to see how you were doing and was so pleased to find your Valentines post. Good news! especially about being able to be a hands on Grandad and the reasonable quality of life. I'm very happy for you and your family. I remember some of your other posts after the transplant and reading an encouraging message that the other Chris sent saying anything is better than pushing up the pine cones or words to that effect., and I liked your Valentines message of encouragement it was great. Here in Winnipeg, I can still see snow but we are in the melt and I can see big sections of my garden. Spring break week was last week, and I had the grand children for a sleepover, and also took my grand daughter clothes shopping. All lovely things. At the moment my MF is not progressing, just sitting there, for which I am very grateful. I've just had to take steroids for painful eye neuralgia, but other than that I'm okay. Take care.
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