Hi Vicki

Every month I get Franks readings and try to make snse of them. Last month PP wa 2, Kappa light chain 10.1, lambada light chain 7.6 an ratio1 .33 this month readings were respectively PP2, KLC 8.3 LLC 7.5 ratio 1.11. So I am assuming that as consultant doesn't seem worried that this is fine. In 6 years Frank has only had 1 bone marrow…[Read more]

Thanks John.

One of the issues is that when you're on trials like the Myeloma XI trial, they won't let you have it sub-cutaneously (or at least they wouldn't a year ago when I was on it!!)

Not sure about how much revlimid is known to cause PN so need to ask more at my appointment next month….didn't think it was a major side…[Read more]

Hi Megan.

I was on velcade too and found that cold feet were the start of neuropathy. So glad that Phil has had the dose reduced as I tried to stick it out and it got worse and worse, to the point I had to have medications to try to relieve the pain…and they didn't always work! Luckily 6 months post velcade/ SCT things started to improve and…[Read more]

Hmmm… I hadn't even thought about it and have to say that I went swimming after about 6 months as my kids were desperate to go with us, and I was sick of making excuses of why I couldn't do things with them all the time. I spend my life around snotty nosed kids coming over to play and so can't really miss these things.

This summer we went to…[Read more]

Hi Sarah Jane

I am quite close to you as I live in High Wycombe!

I was diagnosed in 2009 with SMM and then progressed to treatment about a year later (although I now get treated at the Marsden in Surrey). I also was put onto the Myeloma XI trial in November 2010 and got revlimid first time. It worked for me for 4 weeks and then I plateau'd…[Read more]

Dear Vicky

So sorry your Dad has lost his battle againgst the terrible MM. MY sympathy to you, your Mum and all the family.

Lots of love.

Mavis x

Dear Ann

Just wanted to add my sympathy at your loss of John. What a blow for you and the family. You would have every right to be feeling very angry at the unfairness of it all. I just hope you can hold on to all the great memories you must have of your time together.

Much love.

Mavis x

Hello Amanda and Bob,

My name is Megan and it is my husband Phil who has Myeloma, he was diagnosed in May this year. I see from your other post that you live in Cannock, we live in London but Phil was born in Walsall and still has family in the area. We were married in Lichfield. I have found this forum very helpful and everyone is very…[Read more]

Hi Helen

Just caught up with this thread. Sorry you have been feeling so under the weather. I'm not surprised. I remember when my daughter, then three, had whooping cough, we were up nights on end boiling kettles for steam to help her breathe! Youn ARE a tough cooky to have been working through it all. I hope your employers appreciate what…[Read more]

Hi Amanda and Bob
Well I dint have any trails but I was on CTD in Feb 09 for 5 cycles (28 day) then SCT in December 09, now drug free and doing well 😎
Its all doable Amanda, but it has its bad bits am afraid but in the end it works out OK :-D, so four years this next Jan since I started my road to remission and that has been achieved 😎 and…[Read more]

Dear Ann

I am sorry to read about The loss of John in his hard fought battle with MM.

Love and Hugs to you and your Family at this sad Time

Tom xxx

Hi Sarah Jane

Welcome from me. I am not on a Trial, but have just has basic CDT, but wanted to write and say that I didn't have any bad response to Dex so obviously some of us get lucky. I have had other problems, but that's MM for you!

All best wishes as you adjust to this progressive diagnosis – hope the drugs do the trick for you as…[Read more]

Hi Amanda,

My dad is on the X1 trial and has just completed 6 months of CTD and a course of radiotherapy and now just has 4 weekly zometa infusions. Its been a tough uphill struggle but hes just starting to feel a bit better…..it seemed impossible from where he was 7 months ago!! Its horrible seeing them go through the treatment but it will…[Read more]

Hi Lorna

Hope you are feeling more up than down,this illness brings you down to earth,big time,but saying that it does make you appreciate what you have,in your case how lucky you are to find the man you love.
Some one once said to me life is like a card game,you have been dealt your hand and it is how you play it that counts.
I feel down at…[Read more]

Hi Amanda

We live in Wolverhampton! 🙂

Mike (he with the myeloma) was diagnosed in 2010 a few days after his 55th birthday.

I know exactly how you feel about the lack of support groups and I'm more than happy to meet up for a coffee.

My email is: luvlylorna63@hotmail.com or you can find me on Facebook if you search for "Trelawna…[Read more]

Hi Sarah Jane

Have you thought of emailing Scotty and requesting an invite to the under 50s site yet? They might be really useful to you as you have said elsewhere that your SMM has progressed and you are now on the Myeloma XI trial.

Lorna x

Hi Pat

Glad you managed to sought you pain out,pain can drag you down,and it is the last thing you need.Tramadol is effective but again not a slow release,your own doctor will not like you having a controlled drug,plus they are addictive so watch out for side effects.

Going once a week will take away some of the strain,when Slim was very ill…[Read more]

Again, thank you for all your kind replies. I will bear in mind the advice you have all given.

Lorna x

Hi Nettie

I'll throw my penny worth in too and say Mike is nearly 2 years post SCT and his consultant still forbids him to visit a swimming pool! Oh well. 🙂

Lorna x

Hi Everyone
I do not think I ever felt angry with are situation,sorry we had put off doing many things,wish we had not put them off to a later date,but that,s life,you take your chances.

In fact I felt lucky,we do not have much money but we have not waited for retirement to do lots of things,I just looked at people,s lives around me.So anger…[Read more]