I keep up to speed with the Forum, I don't often post, when I do, I have always had kind informative replies...
I joined you folk last year in March, after ET Diagnosis..
Little did I know by May 18th, I would be diagnosed with MF Intermediate 1.
After BMB which I'm so glad I had it, at least I know what I'm dealing with more or less 😱
Thus I'm ET Jak2+ and MF, however today I received the results from Gene Panel Test it appears I also have the AXSL Mutation along with Jak2+...
Rather disturbed today as the letter says I'm much higher risk with AXSL...
I have been rather under the weather these past weeks..
I have been asking about Ruxolitinib with my Haematologist but I'm stuck on Hydroxycarbamide until I get worse and reach Intermediate 2..
Having received this today AXSL, I'm wondering if this will strengthen my case for Ruxolitinib..
I'm very aware of the Financial Cost involved, however as MF is the rarest of these MPN's fortunately, and qualifies one for Ruxolitinib once you are sick enough, I would like to be given a chance at having it, especially after today's news.
For me it would seem 2019 is carrying on from 2018..
Come 18th May it's my First Anniversary with MF..
I have learnt a little, but still so much more to learn..
Awaiting an MRI as I have developed severe pain in my lower back and Rt Iliac Fossa..
Saw my Haematologist a week ago and he is worried about the level of pain..
I'm not a sissy with pain, which is documented in my notes, so he knows something is wrong..
However this result was not available at that consultation...
I will be asking to see my local Haematologist asap and ask again about Ruxolitinib now I have the AXSL result from Guys...
Bottom line is, anyone know how this impacts the MF ?
As Always My Best to All on this MPN Journey..
We are a rather Elite Group All on a Journey, None of Us Actually Want to Be On...
Hey ho we are on it, so Best make the Best of it...
I'm looking forward to London and Newcastle Forum later in the year...
Maz does go that extra mile for us and helps wherever she can, as do all the kind folk I have become aquatinted with on here, all good people..
Mary 😘
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pontygirl
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Yes, ASXL+ can be a tad disturbing... However, it has not been the end of the road for me as yet, as not only am I still here but I believe that I am also growing stronger with my diet and exercise regime...
Why not ask Prof. Harrison about the Ruxolitinib? It will help with emotional and mental disposition too, if I am not mistaken. At least it did in my own case, and helped me to find the where-with-all to really take affirmative action concerning my health, and general well-being...
But yes, then there is the expense too...
In Australia now, Ruxolitnib is covered by our Pharmaceutical Benefits Scheme (PBS). Does your NHS not do this at the present? If not, then w/ the help of MPN Voice, and some others, perhaps a Lobby Group could apply some pressure to your government? Just a thought...
In any case Mary, I also announced my ASXL+ mutation here quite some time ago, and as I mentioned I am continuing to grow stronger in my health and fitness... I will really need to too... as you might have also heard that I am fully intending to cycle around Australia to raise funds for MPN research in Australia, where currently little to none is presently being conducted etc...
Yes, it is true that we are all just a tad different... However, wherever optimism exists, I believe we latch-on, grab hold and never let go...
You are a Shining Example of our Forum in many ways..
You got yourself reclassified, you Exercise in Extreme basically you are fighting every inch of the way..
At present I'm in so much pain I'm just about able to stay mobile around my home and walk out to my garden, that's about it at present...
Interesting point you made about Ruxolitinib helping with Mental Health and Emotional Disposition..
Thankfully I'm not loseing the plot, but I agree this constant pain I'm suffering does nothing for my Emotional state of play...
It has most definitely ground me down these past weeks..
And my nearest and dearest may say, I have done a few whacky things of late but nutty I am not...
Being an RN albeit not so long Retired, I have plenty of friends and former colleagues, who will tell me if I lose touch with reality 😃
Seriously I do understand what you are saying about Ruxolitinib and appreciate your words of wisdom...
I do need a pick me up moment and to be Pain Free...
I will PM you with further questions later...
I wholeheartedly Congratulate You on the MPN Mates Forum, Australia....
What an achievement as far as I can see wherever there is Fundraising for Research into our MPN's, it's a Good Thing...
I intend to join and maybe meet new people per se from the Antipodes...
We are purchasing your wrist bands but don't want them, too far to post thus it's a Donation really..
And we all wish you well from my Family....
My daughter Sarah will shortly be walking Mount Snowden, in Wales for the Air Ambulance here in the UK no mean task I assure you..
She is a Senior member of Staff at an Airport thus this year it's the Air Ambulance that is the nominated Charity...
She has an idea for Fundraising for MPN Voice next...
She is seeing first hand how this MF is slowly changing her mum, just 1 year down the line come the 18 May...
Had the medical fraternity picked up on my Platelets Riseing back in 2015 my Life Insurance Policy would have paid out for Critical Life Limiting Illness..
2017 I had my 65th Birthday and we decided to let the Policy Lapse..
I Retired from Hospital Nursing and it didn't feel worthwhile continuing paying huge amounts for relatively small return after 65..
We own the Burial Plot and the rest will come out of the Estate eventually...
But makes me cross that for the sake of knowing something was wrong back in 2015 and Zero action was taken until January 2018 by which time I was uninsured !
Those premiums had been paid for 40 years arghhh...
The payout would have been very nice and I might just have taken, Around the World Cruise with some of the cash...
All that said, like everyone else I would prefer not to have this MF, but in reality if not me who ?
I would give our home everything we have, Not to have MF....
But dreams aside I have it and that's it, I'm a MF JAK2 AXSL....
I intend to push for Ruxolitinib especially in light of this AXSL now..
And yes I do see the wonderful Professor shortly, and I might just find out how to lobby the Powers that be into giving Ruxolitinib once diagnosed with MF..
It does give you Entitlement to Ruxolitinib once you have MF, what you don't know until it happens is you need to be at stage 2 to have it..
I'm currently stage 1 , Peter in
N Z,
( Biggles) told me how he met a lady at a meeting exactly the same situation, she also has to become more sick stage 2 before she can have Ruxolitinib...
Anyway Congratulations to You on Such a Wonderful Achievement with your Forum, I note our wonderful MPN Voice must have helped you, as I see you thanked MPN Voice..
All research benefits All of Us as One Unit on this MPN Journey of Ours..
To find a cure apart from SCT, will be wonderful for All now and those that are yet to be Diagnosed and join our ranks...
Thank you for taking the time to post, much appreciated...
" Credendo Vido " I will Believe once I see Ruxolitinib 🤞
MF can easily mutate to AML ACUTE MYLOID LEUKAEMIA hence I'm hopeful of staying away from AML for as long as possible if I'm lucky Never!
I'm hopeful that another MF sufferer who also has AXSL mutation other than Steve in Sydney who is a great example in his determination, and has huge stamina to work so hard on his MF to be reclassified.
I neither have the stamina or the willpower but I'm trying...
Another in same boat with MF JAK2 and AXSL and how they are doing will be nice to hear from in the nicest possible way..
Like all MF patients I was devastated last year when diagnosed...
I could live with ET with normal life span, MF is Life Limiting and only cure Stem Cell Transplant, plus the Leukaemia cloud hanging over our heads is not easy to live with at times, for that is the next progression if one is unlucky..
I appreciate your kind reply and trust you are well..
Have a Nice Bank Holiday Weekend if you are in the UK...
I remember you welcomed me last year when I started out with ET...
Sorry to hear this. Would you consider a SCT? I think AXSL1 would usually mean seeking SCT a bit earlier than usual but my understanding is that the prognosis then the same.
Timing a SCT must be the ultimate nightmare, don’t want to go too soon when still have reasonable QoL but don’t want to leave too late when chance of success starts decreasing.
Plus there are a number of new drugs in trials at the moment, some of which appear to hold real potential. Our Hems are making great strides in understanding the complexities of MF and one has to be hopeful that disease modifying drugs are now be in trial. Currently the only (possibly) disease modifying drug is Pegasys but this is not yet clinically proven to the satisfaction of many Hems.
If you are not considering SCT, it might be worth asking your Hem if there are any trial options.
Like others, I’m really sorry to hear this. It must be a devastating blow for you. I hope that you can access the best available MF treatment to help alleviate both your current symptom burden and halt progression. Fingers crossed for you!
I also have the JAK and AXSL. The AXSL showed up 2 years ago and I had ET then. Last BMB showed I also have MF and TP53 which is a real bad one. I suspect there is no way for me to avoid AML. I have been on 20mg Ruxolitinib for 5 months now along with 2 500mg Hydrea per day. I feel OK but get tired easily. My blood work lately has been showing my RBC count going down. Yesterday my RBC was 2.7 and HGB 8.2. My Haem is reducing my Hydrea to 1 per day to see if it helps. I had 2% blasts also. I suspect my WBC count will go way up when I reduce the Hydrea. I had ET for 15 years taking Hydrea and did real well until MF transformation. I do suspect my end is near now. I was hoping to make it to my 75th birthday in September. My lower back has been getting more sore, mostly in the morning. I wish you the best in getting pain free.
My heart truly goes out to you, I wish I could give you a hug..
Thank you so very much for telling me your history, I feel absolutely ashamed for being sorry for myself..
You are clearly going through so very much yourself and yet you have so kindly responded to my post...
I am just a tad younger than you kind Sir, I Congratulate you for having done so very well with ET for 15 years..
And you are still doing so very well even with MF and TP 53 which I have Zero Knowledge of, at present...
I have spent my whole working life Nursing and I have Nursed many gentlemen such as yourself and thinking as you are right now...
As a Nurse not a fellow MPN sister
may I ask you to cast aside the notion that you are feeling of
" the end is near"...
Please take your Courage in both hands and stay firm...
Look forward to your 75th Birthday Sir, and remember just how much you have already overcome since being Diagnosed with ET...
If you were my patient I would be chivvying you to put the worst out of your mind...
Staying Positive is key to our very Existence in the many situations life throws at us...
I truly will feel Privileged to Wish you a Happy 75th Birthday...
Your Haematologist is clearly doing the very best he/she can..
Work with the Haematologist let them do the Science Side of things, you just concentrate on being as Comfortable as possible and take each day as it comes...
And I will Very Much look Forward to your Birthday in September, as I think many of our fellow MPN brothers and sisters will be rooting for you too...
I do understand what you are saying and I will concede and say there is a time for Everything !
I personally have never wanted to be Methuselah, but I too wish to Celebrate my 75th Birthday just like you...
No matter what this throws at me AML, the whole Chabang I will do my absolute very best to Celebrate 75 years on this mortal coil of ours
By my reckoning you are a 1945 end of War Baby..
You are made of strong stuff Sir, dig deep into those reserves of yours..
Babies born around then had to be strong to flourish, rationing was hard on new mother's clearly your parents made an excellent job of raising you during difficult times...
If I can assist you in any way at all, please don't hesitate to Private Message me and I will do my very best to help and gently chivvy you along in the nicest possible way...
I wish you as nice a weekend as possible, you are not alone in this..
You have gained a fan in me today and I promise you I will be following your progress right up to your Birthday and beyond...
Actually if you do not mind of course, Private Message me your Birthday Date, or share on here up to you Ccsial..
It's a Special month to me, my mums Birthday was the
Thanks so much Mary. I try to stay positive and my faith in Christ carries me through. I do know that the TP53 has "dismal prognosis" so I accept that. I just hate leaving my wife of 52 years. I have always taken care of her. Her sister and her husband will come once a month to help with things. We also have some good neighbors.
I still get outside and do some work around the farm. Today I cut down two small trees but I do get tired pretty fast, especially when it is hot out. I have always been very active.
I was born on Sept 30, 1944 in Chicago. I now live in Northwest IL. Thanks again for the kind words Mary. I pray you will not transform to AML. I pray the Lord might spare me from this if possible.
Well 30th September it is thank you for sharing with us..
Al clearly you are doing a grand job there with the farm and cutting down trees, my goodness busy chap yesterday...
Well I got it wrong about a war baby in the UK, still difficult times in the world sadly, but I was right about strong genes...
Farming is hard toil but very rewarding to see the fruits of your labours...
Al we never truly leave our loved ones, we walk besides them every day, until reunited.
Yes it's a difficult thought we all have about leaving, our life partner, rejoice in the 52 years and still counting you have been together, that is precious beyond measure..
Family and good neighbours is a blessing for all of us..
You may have guessed I'm in England UK, married 43 years come December..
I was born in South Wales a small market town called Pontypridd also known as the home of Tom Jones..
I was transplanted to England aged 18 ..
But my nationality is Welsh and very proud of it..
My children are all English born and bred as is my husband..
During the Rugby Season and Internationals there is always a English/ Welsh divide ..
Obviously I support Wales my daughters side with me and the sons side with their dad..
I also have a 9 year old grandson that sticks with his grandmother and backs Wales, the family think I have bribed him, Not Guilty on that...
Chicago the Windy City and overhead rails through the city at one time, possibly still there..
Illinois if I'm correct is a very Argricultural Area ?
Shortly I will find out the time difference between us..
I have stayed in the US on vacation in Florida many times.. So I know Florida is
5 hours behind me...GMT.
Our first vacation was in 1997 flew for almost 10 hours via
Maine Canada for re fueling ..
Landed in Sandford and had gained 5 hours per se..
We loved it and made that trip 5 times in all every time being faster flight than the last trip..
Hubby and I spent a week Island Hopping on the Florida Keys, beautiful especially Sarasota..
I've seen the shuttle Colombia land at Kennedy Space Centre, which we have visited 4 times in all..
We all have Retina and Finger Print recognition done, so entry is quick...
But Al I have often wanted to see more inland of the US..
I follow the Pioneer Cook,
Ree Drummond the lady cook as much for the sights on the Ranch as her Cooking Skills...
Thank you Al for praying for me to be spared AML and I will pray for you to enjoy your
75th Birthday with your good lady wife and family...
We will Celebrate here for you too kind Sir...
It's a British Spring Sunday here and the garden is becoming colourful my Silver Birch tree has beautiful leaves on it and I have Glorious Blue Iris Blooms and Roses my personal favourite of flowers..
Al try not to exhaust yourself in the heat and maintain a high water intake always..
Yes I know it means night time trips to the loo for all of us Seniors..
But water helps our body chemistry no end and flushes out toxins, but you know this you can tell me much, you have far more experience than me with MPN..
Al whatever the time is with you ( I will know once I log off here) I wish you a happy day with your wife..
We will keep in touch promise, stay positive and take each day as it comes Al..
You are in my thoughts and others too of that I'm sure...
Thanks for the update on your family. I have two kids and 6 grand kids. Farming is a lot of work. Illinois is a very agricultural state. It produces about 15% of the US corn second only to Iowa at 18%. Also produces beef, pork, and soy beans.
You have had some nice vacations in Florida. I have only been there a few times and have never seen the cape. My wife and I do not travel much. My wife is a retired school teacher and principal. We did enjoy 20 years of house boating and travel on the upper Mississippi river.
It is 10:08PM here and 3:08AM GMT. We are on DST now. I used to know the time zones pretty well as I used to be quite active on the ham radio and talked to people all over the world. I just got tired of maintaining the antennas.
I’ll be going in Friday to see what affect reducing the Hydrea has. Hope you are doing well. I pray your back gets better too, that is not much fun.
That's easy for me to remember, funnily enough my youngest daughter was saying yesterday Sunday, that we need a Florida trip with her two small boys, just as we have done with the older grandchildren...
We will see, I fear Travel Insurance for the US will be rather Expensive for me especially.. But get this issue sorted and I'm happy to go.
My father came with all of us, aged 75 years in the past, and loved the 3 weeks we were there..
Busch Gardens in Tampa and Kennedy were his favourites..
I have wonderful photos of Dad sat in a Rocket in the Rocket Garden at Kennedy..
And we watched a Launch, he found that interesting plus the Cape is full of Wildlife to see..
I feel we were lucky to have seen Columbia land and on another occasion hear that sonic boom in Kissimmee as another shuttle re entered our atmosphere ..
I always do the Insurance for all the family traveling, ensuring we have CDW SLI on the vehicles, amongst the other important segments for the individual policy's...
The grandkids range from 19 years old to 2 years of age..
4 grandsons and 1 granddaughter who will be
20 years old on the 10th of September, happily another celebration with yours..
That's nice you have 2 Children and 6 grandchildren they no doubt keep you both busy...
The mighty Mississippi now you are talking, I really would love to see it and stay in
New Orleans for Mardi Gra..
How wonderful you spent 20 years sailing on a Houseboat
Fabulous Al ...
You must have some wonderful memories, stories to tell...
My husband is Retired Military and henceforth he has seen places I have not, obviously...
The world is shrinking and so easy to hop a flight these days.
We have been to Costa Rica, Central America and stayed almost 5 weeks with my friend who I trained with back in the early 70's we were two young student nurses having a ball with life too..
My friend loves the UK and really wanted to stay permanently, however for family reasons she eventually had to return home to C R after we both qualified..
Our reunion took place in 2015 and it was as if 35 years gap had never happened, we simply picked up where we left off when I watched her
Pan Am flight leave Heathrow..
Maria came to us for 6 weeks in 2016 with her daughter, for my youngest daughters wedding in
Bath City, Somerset UK..
Costa Rica is beautiful with it's Rain Forests, Volcanoes and 2 coasts of beautiful beaches..
We spent 4 days at a Spa Hotel at the base of a Volcano and the various swimming pools were all thermally heated, it was like having a warm bath the Royal Corin is the Hotel and it's fabulous, I could have stayed a month.. 😊
You are up in the Rainforest so it rains gently, but its warm rain and the monkeys are swinging through the tree tops amongst so much more..
We actually saw the top of the Volcano one morning as the clouds parted, magnificent sight..
And no smells of Sulphur in the myriad of pools on offer, apart from just one occasion very briefly...
I need to draw up a list of places I would like to see..
Just an overnight stay in Toronto on the journey to CR.
On the return leg we had 30 hours lay over to break the journey with 1night to sleep and rest, I hoped to go see Niagara Falls..
It was mid February so Niagra will have been Frozen but Majestic... It was minus 36c but wonderful in some senses..
Husband is a fuss pot 😊 and simply wouldn't risk the day we did have to drive to Niagra just in case we were delayed in getting back to Ontario and missed our night flight back home..
So we stayed local for the day and that was nice too, but not as nice as Niagra..
So I need to return it's a 5 hour flight to Toronto/ Ontario.. 😜
A Radio Ham that must be hugely interesting to chat to folk all over the world..
I understand what you are saying about the Antennas we know a chap here that is a Ham and he has several huge Antennas/ Ariels which need a lot of maintenance to the masts..
Our 9 year old grandson, his school did a science project that went to the International Space Station with Tim Peake and he linked with the school from the ISS and indeed visited the school once he returned to earth few months later..
Our little chap was already into the Cosmos and was delighted to meet Tim Peake..
We gifted him a powerful telescope and he really enjoys watching the night sky especially..
His parents have set a time frame on his star gazing, otherwise he would be on it all night, if he could..
Now he has a 2 year old brother who feels he must share everything with him.
He is wonderful with him but certain things are off limits..
His Telescope, Plane Collection which is vast, and trucks..
There is no negotiation on those items..
We brought a MAC Truck back from CR, it's big so I filled it with clothes to get it in my luggage, at that time we couldn't buy one in UK..
The things us grandparents do for the next generation, the extension of ourselves..
My eldest grandchild Lillie is the image of my mother..
Of a morning when I look in the mirror, my dear mum and grandmother are looking back at me..
As I age I'm looking more and more like mum and gran..
My children see it too, evidently the genes are there just waiting to break free...
Which of your grandchildren do you see a resemblance in of your good self or your dear lady wife ?
So Friday is Haematology Day, you will be in my thoughts and who knows you may be surprised with decent results..
If not then I'm confident your Haematologist will be reassessing your meds, our bodies are wonderful things Al.
Never give up on it, the good Lord will call you home, when the time is right, as he does all of us, and one by one the family chain links again...
In the meantime you have a milestone birthday coming up as does my granddaughter Lillie, in the Bloom of Life, I do remind her to enjoy these years as they are precious..
She is at Bath University studying Criminology..
But as the saying goes,
" you cannot put old heads on young shoulders ".....
Well Al it's early morning for you and I'm guessing with a lifetime of farming you are up and about...
Have a good day as well as you can..
Please don't feel you need to reply to this, nothing worse if one is feeling tired...
However now we are aquatinted it's a real pleasure to hear from you..
May be a good idea to PM as our general chitchat may be boreing to some of our lovely group here..
I will leave that decision to you Al, but I will add there are many of us supporting you, and are delighted we can celebrate your coming Birthday with you...
I thank you for your good wishes for my pain issue, like you I am made of strong stuff and I will overcome this..
We all need Positivity in our lives and a little help from our friends and family..
I have come to realise we are a kind of Family on here, and we endeavour to help each other when it's needed...
Truth is my Blood Sisters and Brothers tend to know more of what is going on in my head and MPN Journey as I simply cannot stand to see my daughters especially, fretting over me and It..
The sons are the eldest and are deep in thoughts of It..
Whereas the girls would be fussing and openly questioning me, thus I hide much of my pain and thoughts as much as possible..
I turn to the Forum and I have made some good friendships on here and I'm so happy to add your good self to my friendship circle. 😊
AXSL mutation! I am so sorry to hear this and my heart goes out to you.
You are my inspiration and I am sure not only
mine.
Could it not always have been there like the JAK2 ? Unfortunately I don’t understand enough about it to give advice but is the gene panel testing something that you have been waiting for the results from for a while now?
Please listen to our friend Steve from Sidney and know that we are all in the same optimistic boat. We are in this thing together Mary.
It was a shock yesterday I assure you, have no fear I am all over this for a change in Medication...
I had Gene Panel Test done September and November last year..
September samples were lost etc between Labs, so repeated test in November to establish exactly what is what with my MF...
The test can take 6/8 weeks to get the results, somehow my results didn't arrive until yesterday..
The paperwork is dated 15 th February, I'm guessing it was filed in my notes in London...
My local Haematologist chased after the results when he discussed it with me last Friday in Clinic..
To be fair I had forgotten about the test myself...
Family life and all that jazz etc...
It simply means I need to change medication to either Ruxolitinib or Pegasys..
Simply put I have 2 out of 3 mutations...
Like all of us here with MF, I hope to avoid AML with the correct medication in place...
However after reading the Post from Ccsial and he says he has TP53 I would like to establish if that is a Fourth Mutation ?
What a gentleman and made me feel ashamed of moaning about my situation...
Anyway Lesley I will PM you,
we can do this MF us ladies are made of strong stuff..
I literally wanted to hopefully get a sense of General Consensus off anyone faced with the same scenario as this...
As Always the Forum has responded and I thank every kind soul on our rather Exclusive Journey on the good ship MPN as we are most certainly in the same boat, doing our very best...
I am sorry to read of the pain that you are experiencing and also of the news you have had about ASXL. It is very hard to keep "upbeat" or even "up" with pain accompanying you through the day and night, and I do hope that you are able to get a diagnosis soon for that and some action in place to sort it out.
The Ruxolitinib question is frustrating. I realise that the eye watering expense of it must challenge the purse strings of the health budget, but it does seem rather illogical to wait until someone is really very ill before administering a drug that might have prevented them getting so ill in the first place and having some quality of life!
Anyway, we send our love and very best wishes to you all the way from New Zealand, and will email you also soon.
Yes it is all rather frustrating to need to move up a notch in severity of MF to have a change of medication..
I am hopeful that the AXSL may assist me towards a change of therapy..
We will see what transpires as with all things, tomorrow I will be speaking to my CNS to schedule a appointment with my Haematologist asap and hopefully I will get some answers from the MRI in June...
Hey there Mary, , feeling compelled to respond to your honest and thought provoking post. Firstly I'm sorry you haven't yet been prescribed Ruxolitinib as in my view the sooner you can on it the better and to deny you on the strength of the difference between Intermediate 1 and 2 stage MF is harsh at best. And I would certainly be making noises based on your Gene Panel Test which must strengthen your case. Though I m sorry i can't tell you how it affects your MF.
Secondly , I applaud you acknowledging what Maz does on all our behalfs and the contributions others make especially at a time when you have a anniversary looming that you'd rather not have.
My apologies in not responding immediately to your kind messages.
I certainly intend to raise serious questions about Ruxolitinib as you say, the Gene Panel Test Result should assist me in that quest...
As Lesley says," we are but middle aged" 60 is the new 40...
Lovely Sand Dancer and a good friend to me, I have been so very fortunate to make the acquaintance of lovely folk such as yourself and you were very kind to me last year when I was upgraded to MF within 6 weeks of getting my head round ET, and the prospect of commencing Hydroxycarbamide...
I suspect you have it windy in Blackpool just as we do in Weston super Mare, it's a calmer day today but that wind was cold yesterday...
At home today for the Snooker Final for hubby..
I will potter on just one tub in the back garden today..
Is Blackpool busy, I'm certain it is, we avoid our town on B/Hols it's rather manic and Traffic Jams...
I can toodle when the place is
quieter...
I was really sorry to know your GVHD is still giving you grief, but I also see you are a gentle determined family man and with the love and care from your lovely wife, you are a great example to all of us...
I'm with you on "Heartbeat" and the classics, the grandkids don't have the music 🎶🎶 we did...
Having said that my 17 year old grandson loves that era of music to his sisters amazement and leg pulling...
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Shielding, update
a bit anxious!
MF high risk Mutations
