Hi Dai
What a devil that is am sorry to hear that, wonder how Ill you need to be before ur "P" starts to show MM :-/ anyway Dai whatever they throw at you am sure you will cope with it and the bloody side effects.

Tom "Onwards and Upwards"

Hi Eve

Posted on my face book? cant find it dont know where you posteandnd av tried to find you and cant 🙁 wot name are you under ?
And I cant wait to be your Friend xxx
ps wot name do you go under and do you have a photo ?? xxx

Hi Helen
Well i had a hiccup or two en route,not yet made sct yet.My temp started to spike over new years and after.Ended up going into hospital for 3 weeks to have many tests run to see what was going on.In the end it seems the myeloma had come out of remisssion and come back.I was on the myeloma 11 trial,now off this and on PAD for a…[Read more]

Hi Bridget and Helen

Bridget I do not know if they do accomodation,but I will ask,I have been told its the main trauma hospital in London,deals with anything bad that,s going down,The easiest solution would be go in one day have test then come out after 2 days of test,I am lucky I have a daughter who lives in Sevenoaks,but last time she…[Read more]

Hi Dai what a bugger!! Rev and Dex have proved to get good results though and as you say the other advantage is freedom from hospital visits. I hope it does the trick but at least if you do need further treatment Carfilzomib would be an option and may be more readily available love Bridget x

Hi Andy welcome . Its sometimes funny when you find yourself doing mad things because of steroids!! There have been times when I found myself cleaning like a mad thing at 3 am !Like you I was diagnosed after about a year of back pain and they discovered 3 vertebrae had been destroyed completely After surgery to stabilise my spine with huge…[Read more]

Hi Mavis you arent alone in having senior moments I have them all the time!! My grandson is 11 and at the moment he tries to appear like a cool teenager half the time , the other half he is the little boy who takes teddies to bed!! Bless him They are under so much pressure to grow up quickly these days its such a shame they cant keep their…[Read more]

Hi Eve I must admit London isnt my favourite place either too busy and too noisy , perhaps 30 years ago I would have had fun but not now . I dont drive into London luckily Jeff doesnt mind so he drives as I cant manage the walking and stairs when going by train. Most weeks I am there at least once and every fourth week I go twice a week not my…[Read more]

Hi Linh

Glad to be of assistance! I tried almost everyone recommended before found World First and agree with all your comments about their helpfulness. They even insured my mother-in-law when we took her Spain last Easter for a very reasonable amount.She had been refused insurance by other companies, just because she had got to the cut-off age…[Read more]

Hi Mavis and Tom
thank you for your good wishers.Tom I posted on your face book,don,t you want to be my friend:-( 🙁 🙁

Hi Bridget

Although I originally come from Liverpool,I am a country bumpkin at heart,so London was a bit daunting,Just cannot see Slim coping well with train,all though easier option,last time we went my daughter took…[Read more]

Hi Eve great news it always feels better when things get moving. Is Slim close to making a decision yet ? It is a scary decision to have to make but the benefits could be immense if all goes well , that just makes it harder to decide though. If you do drive into London there are disabled parking bays dotted around all over the place which you…[Read more]

Hi Bridget

Put it down to a senior moment!!!!! I just read the date on your post. I'm sure there have been some later ones in this category. Wonder what happened to them?

Still, good wishes anyway!

MAVIS XXX

Hi Bridget

How like you to be focussung on others when you have so much to cope with -including supporting yur own daughter. I do have to say I didn't see anything in our local paper about CF Week, but do hope it has been generally successful.

Your daughter has obviously inherited your inner strength.

How is your grandson? MY two arrive…[Read more]

Hi Eve

So glad that at last there is good news. Do hope everything goes smoothly until the STC.

Maybe a last minute cruise will come up. Mind you, after the news today perhaps another kind of holiday might be better! Still, think, after SCT and recovery, there will be so much time for lovely holidays.

Lots of love to you both.

Mavis x

Hellow Eve and Slim

Well am pleased (if you and Slim are pleased) for my Penny's worth for me I am pleased I did the SCT. Good Luck with it all cant offer advice re train or car sorry 🙁

Love to you Both

Tom "Onwards and Upwards" xxxxx

Hi Dave

Interested by your reply. Someone else on the site said their Consultant said PP of 30 before any treatment, if no other problems with blood and kidneys, but when I asked my Consultant, she said she'd rather go by how the PP was rising, i.e. whether steeply or slowly.

Aim of all other treatments is to get PP down to zero for full…[Read more]

Hi Liz and Kev

Yep treatment free now its been a while but well worth the wait, and we also say Long may it last 😎

Love Tom "Onwards and Upwards" xx

Hello Tom!

Well what great news we are so pleased for you! Long may it last!!!! Yeahhhhhhh!!!

Love liz &kev xx:-)

Hi Alan sorry you didnt get enough cells today try not to worry though the little blighters will be fighting to get out by Wednesday!! I had a similiar situation , the first two days I hardly produced any but on the last day they got more than enough Good luck Bridget