Keith……..
What can I say been on a crappy holiday, wish I had stayed home and read your post instead. What brilliant good news
So pleased the velcade has worked for you. Its is remarkable how some of these medications work for some and not for others. Will your transplant be in the Freeman? It has excellent facilities, Lucky you to see…[Read more]

Dear Gill,
What can I say to ease the heartache I understand you will be going through. I have always thought of your Stephen and my Peter as being in the same boat, similar age bone damage etc.
If it is of any help at all, Velcade did not touch the sides of Peters mm, giving him the added problems of Pulmonary embolisms, and therefore…[Read more]

Its human immunogloblulin. Peter was having a few infections tummy bugs etc and taking a long time to shake them off.
We asked if we could go on holiday for or 40th wedding anniversary and the 'man' (consultant) arranged this so we could go away and he not be at risk of infection. I believe its basically a bit of several persons immune system.…[Read more]

Hi Liz and welcome to our unique little club, shame that all of us wish we weren't in this club, but you are amongs friends.
Apart from diagnosis, I think sct time for those of us left to worry about a sufferer of mm is the worst and most worrying. We worry before during and after. Sometimes its not necessary, other times its soooo distressing.…[Read more]

Oh Bridget so like me, I used underarm spray on my hair and went from blonde to white

Dear Gill
I had to laugh because Steven sounds just like Peter, he did the same with his anti sickness tablets. Waits till he is sick then takes them!! so I had a good laugh at your frustration. Don't worry its an attention thing, my man was sweating so much in bed last night I thought we were going to float off, when I woke him to check his…[Read more]

Eve I know what you mean,
We had a five hour marathon at hospital yesterday, Peter was going for his first ever immunoglobulin IV. Being given so we could go on holiday, I thought it would be like zometa, half an hour tops. Following which I was going to book a holiday
How wrong was I and although it was all arranged and in the fridge had to…[Read more]

I Clara
I recognise all of those side effects, brought it all back to me, how Peter was when he was on CDT.
Im so pleased to hear your dad is still going to work with all that is going on and not exhausted
The drinking one was the one that did and still does prove the worst one. You can do things to help the other side effects like wear a…[Read more]

I am so sorry for your loss, and understand your anger. I was similarly angry when my husband who had been under a renal consultant, with kidney failure hypercalceimia, crushed vertebra and mega protein in his urine was not diagnosed with MM for over 4months.
She told him to stop drinking milk to prevent hypercalceimia!!!!!! and said if he…[Read more]

Jet,
I would confirm what Debs has said, you figures must be light chains. Ask you specialist if you have Bence Jones MM. Its a slightly different form of MM. Quite a few people including my husband have it. He went from over 8000 down to just indoor 2000 on his first packet of 25mg Revlamid. Second dose was reduced f to 15 due to low blood…[Read more]

Hi Dai,
I went on the 5th of March to Newcastle one, and had been invited to give a talk from a carers perspective( I hate the term carer I call myself a worrier cos I worry about him) To the 80 guests who attended. I was terrified!
It was an excellent day and well worth attending. The morning is given over to talks by health professionals,…[Read more]

Poor Lamb,
That means your left to do the house training for the poo pee.
I hope you can get him something to help him feel well soon. These toxic drugs are archaic, if only they could find something kinder to treat the dreaded beast, not Steven Gill, but MM.
Sadly because it is doing combat with a belligerent host it needs to come out…[Read more]

Now Gill
You have me thinking that I might have to try that, being newly retired. Hee Hee
MIn

Hi Shirls
Really pleased its all going so well. so I imagine you will be having an additional Birthday now, for the new you! You deserve some fun now but stay out of the big market when you come to Newcastle.
All the best for the new phase of your life and long may it last
luvmin

Ann Its possible that they will also give him GCSF injections rather than an transplant as they will force his body to produce extra new immature cells to replace the ones killed with the melphalan. The body makes its own but help is useful.
min

Hi Nigel,
When Peter was on velcade, his bloods were done in house so to speakThe machine and equipment were in the day ward. (State of the art new hospital) and depending on the results depended on what dose if any he got on any given day. He had days when he got half a dose and other days when his platelets were too low for any velcade at all.…[Read more]

Hi Tracey.
Im the one who's husband had/has the nephrotic syndrome before diagnosis with MM. I was concerned to read of fluid restrictions in your post, as Peter has had to drink more than the average in order to get the light chains out of the kidneys. Its the light chains that alters the glomular filtration rate and stops them working making…[Read more]

A young lady to be very proud of Gill.
I think she deserves a very special hug from her Pop
LuvMIn

Jean have a wonderful time on your holiday, don't worry…… if Frank is not exhausted he must be reasonably well.
Peter used to use diazepam for muscular pain too so hope it makes him comfortable enough to enjoy his holidays. He sounds like a very determined chap and as long as he feels well, don't panic. Enjoy and come back and tell us how…[Read more]