Looks like my dog Ben Happy Easter
luv Min

Brilliant news Gill, Im very pleased for you both,
Min

Hi Sarah,
He had developed DVTs as a result of velcade in both legs and they went off into his lungs where they said there was so many clots in his lungs there were too many to count. Revlamid is a drug your on potentially and hopefully for ever. Thrombosis is one of the side effects so as long as he is on it he will be on heparin. 6months of a…[Read more]

Gill, I think that is an excellent idea, would it be a mother hen party? as we fuss around them like mother hens.
Jo The chill was caused by the IV immunoglobulin they gave him to allow him to go on holiday, he had a really bad fever from it and woke up bathed is sweat then had to change the bed it was so wet' The chill turned into cold and…[Read more]

Hi Jean,
Its good news mostly then, I had a wry smile when you mentioned red rag to a bull. These men can be such a pain in the kneck when it comes to their health.
Enjoy you Easter and your new Grand daughter and family. Don't waste your energy worrying until you have to, thats where I went wrong. Im in a permanent state of worry mostly…[Read more]

Hi Sarah
I have strong memories of administering Peter GCSf before his harvest, ugh it was awful ; and he had dreadful bone pain and back pain in particular, then of course he blamed me for giving it to him. He is now on daily heparin injections for the rest of his life following pulmonary embolisms from velcade. I refuse to do them when he…[Read more]

Hi Debs
Peter is like Bridget with a constantly snotty nose while on or off medication. He is not a sufferer of sinus but I have been plagued by it and the best relief is a bowl of boiling water and a towel over the head and sniff in the fumes. Clears the sinus's at no cost. Friars balsam is a good addition to the water but a bugger to wash off…[Read more]

Hi Caroline
I have been where you are now and its not pleasant. As Bridget says there are other forms of pain killers and getting the dose right is not easy.
I am sure once he is re- assessed for a more appropriate pain killer life will improve. Meanwhile keep your sanity intact with us whenever you need to
Love Min

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]