Hi Gemma

Welcome from me too. It is veru generous of you to be willing to share your experiences, and your Dad's, after what have obviously been four difficult years.

One thing I would be interested in is, how was your Dad diagnosed? From all the complications your Dad suffered I presume he was at a late stage when he was diagnosed?

All…[Read more]

Hi Terry

Welcome from across the pond! I enjoy visiting the Myeloma Beacon site. It is interesting that there are differences between treatment regimes here and in US.

Do hope your smouldering state lasts for many years. I think that the Trial you are on will be very helpful for people who are diagnosed early.

All best wishes.

Mavis

Hi Terry welcome glad you found us. You were lucky they spotted your myeloma early before any damage was done Your doctors sound impressive and very cutting edge , you will be able to access new treatments as well This site is brilliant you wont find a more supportive group of people anywhere and its not all gloom and doom either we share laughs…[Read more]

Hi Helen
No Sibs so will be going with best match that Prof Cook can find on the data base.
Best take note of what Mac the knife says and say no dog,sounds like Mac knows his own mind!
Enjoy the theatre
love Paul

Hi James

Good to see you have got through SCT and now,working on you general health,Slim my husband has not yet had SCT but after a few hiccups with treatment,found himself unable to walk with out sticks then only a short distance.
He started walking short distances often with me pushing a wheelchair just in case, went to one stick,then…[Read more]

Hi Dai

I realise how gutted you must feel for not getting on the Trial. Yhere have been some good reports of Revlamid as a maintenance drug. I do hope that you are surprised at how well you do on this regime. Eventually, if you need it, maybe the Carfilzomid will be available all tested and dose adjusted.

Hope those PP levels remain very…[Read more]

Hi Dai

When I read you had missed out on trials,I put off replying as it just did not seem enough to say how sorry I felt for you,it just seemed so unfair,but hey! some times life is not fair,and by the sound of it you have picked yourself up and hey ho! on to the next treatment.
You cannot keep a good man down:-)

At least with the night…[Read more]

Hi Helen
Sorry to here about the pneumonia but sounds like you dealing with it.Not turned superstious yet just taking one step at a time,decided just to crack on with things and trust in the medical team and Rachal and I will get on with life.Seems like i am due quite a few cycles of PAD before we can turn and look at SCT and…[Read more]

Hi Andy
Again welcome to the site
My name is Eve and I am a carer to my husband,I use to be a 3am person,but things have got a lot better,and my husband took my advice about seeing the doctor and taking an extra pill,to try and get some normality in are life.
He now takes a light ant depression tablet which makes his body relax so sleeps all…[Read more]

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 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