Hi girls
Just thought I'd add my 10 pence worth here. I've been on revlimid for some time and my sense of taste is poor now. Lots of things taste wrong and a few even burn my mouth, alcohol feels like it has chile in it and all citrus except orange are painful to taste. Lamb has a weird taste and spiced food is also uncomfortable after a couple…[Read more]

Hi Ian

You must be feeling a bit down,all that treatment and mm taking hold once again.i hope the velcade does the trick again and would be interested in the result as Velcade worked well for my hubby first time round,and its good to know what is round the corner.

Some times I wish I could swear on this site,and i am too old for the under…[Read more]

Hi Mari

I had just been saying to Frank a few minutes ago that I was going to phone Jackie our myeloma nurse tomorrow to clarify things but he said he would rather I didn't. He intends to speak to consultant when we see her next Thursday. Just hope Frank has no problem with reduced Thalidomide.

Thanks Mari
Love Jean xx

Hi Jo

Happy birthday. Hope you have a lovely day – 21!!!! You had sunshine – lucky you – we are blowing up for a storm. Hope you had a nice drive

The consultant said that the myeloma cells are changing and the predominant myeloma cell is not producing protein says that it is a sign that the myeloma is progressing. Told us the count had…[Read more]

hello Jean
sounds to me that Frank is doing ok if it is the para protien coming down my consultant would say thats marvellous perhaps you were talking at cross perposes better go over your tape again. I t was my birthday today so we had a drive to the coast sunshine all the way for a change
Lots of love Jo x

Hey Vicki that's great news about Colin. Hope he goes from strength to strength. I thought that about the protein but I taped the conversation so I will listen to it and then ask her next Thursday.

All the very best
Jean x

Thanks Keith

It is the para protein. She was always please when it came down. But the decline has been dramatic and she said there was something going on. I emailed Ellen to ask her. So will see what she says.

Thanks
Jean

Hi Sue

Welcome to the site
Glad to see you managed to get some help with your questions,you should find on here if people cannot answer your questions they will point you in the right direction.

Let us know how things go with hubby remember there are people who are here to help you.Eve

Hi Sherif
I have come on your post just to say hello,and say I hope you find what you need,and wish your mother well Eve

Hi David

Its all coming out now,its not that you could not sleep,its because you did not want to sleep:-) . Must admit I have done a few champagne breakfast after all nighters the only problem was I could never remember who came to breakfast,so never kept in touch.(mess 41 commando unit) bar would not dream of chucking you out.

Had 4 hrs…[Read more]

Hi Dia and Tom

Well Tom I know I said I am just the carer,but I forgot to mention everything else,but as it would take,all day I will just except your praise:-P lol

Yesterday I took Slim to Kings starting off at 10am,getting there for 1pm and then spending hours waiting for bloods,doctor,then prescriptions ,getting away at 5pm,and getting…[Read more]

Dia

My eyes have so much grit it them,through lack of sleep,and I am just the carer :-SEve

Hi Wendy
Well done for the run, not something I'm likely to ever do so I take my hat off to you. And a brilliant total for the charity
Love Helen

Hi Keith and all
I too am just on an aspirin a day with the revlimid, though I did take the heparin injections with me to NZ for the long haul flight, just as a belt and braces approach which seemed to do the trick. Revlimid makes me tired too and everything still tastes funny, but it's working so not complaining:-)
I hope you get on ok with…[Read more]

Hi Keith

good luck with the new treatment I sure this one will work for you I know a lady in my support group who is on her fourth year of REV DEX so it sure works for some people you didnt say where you are going on hols hope its somewhere warm
Love Jo x

Hi Mavis
Thanks for your wishers.

No such luck on the bloods,came out of hospital on Saturday,went yesterday to check bloods,phoned he needs platelets so back in to day,then check bloods again Wednesday,Then 86 miles to Kings Thursday.
Tried ringing Kings yesterday as Canterbury could not answer a question about injections,still waiting a…[Read more]

Hi Jen
You could be talking about my husband,except he had tumour on back,plus lesions on skull and shoulders after first CTD his bone marrow went up to 80%,so started Velcade which took it down to 6%,it was still going down,then he had his SCT and has come home,but is having a few blips on the way.

Slim has a chemo brain,I drive most of the…[Read more]

Hi Wendy

Thanks for your very informative reply. Frank is only on 100mg of Thalidomide and had this bad reaction, I would hate to see what he is like if he was on 200mg!! We will see what happens tomorrow but I hope they reduce the doseage and then increase it gradually. My concern Wendy is that Frank has a history of drug intolerance and I…[Read more]

Thanks Vicki

I really appreciate all the support this forum gives. I feel a bit more positive as I told Frank what David had said about PN a d he is asking some questions. Which is a start. Dreading tomorrow but I know what you mean about the worry. Good job I like football as well. It has only started and one of my daughters in law says its…[Read more]