Hi Keith
Sorry your struggling with the Rev/Dex. I find I have half a day to do what I want to do then I get tired around 1pm and have to sit in front of the tv and fall asleep during the afternoon film. I haven't at any time felt like passing out though! Hopefully it is something that will pass.
You may improve as you become use to the drugs…[Read more]

Hi all

Many thanks for all the replies 🙂

Dai when I was first diagnosed my PPs where 50 and I was told I had to achieve at least a 50% reduction before I would be considered for SCT. Wether that is still the case I will check when I next see my consultant. They have already tested my brother and sister for matches for a Allo SCT my brother…[Read more]

Dear Siobhan
I am very sorry to hear of your mum passing. I only knew her a few months but she was inspiring. There are a lot of inspirational people on this site but in my opinion your mum was the star. She gave advice and comfort freely and helped me when my head was filled with dread of MM when I was first diagnosed.
I hope you can gain some…[Read more]

Hi Keith
Yeah I self administer the injections. It's not too difficult you soon get used to it.
All the best
Andy

Hi Keith
Good luck with the Rev/Dex treatment. I hope everything goes well for you. I'm on Rev 25mg for 21 days then 7 days off and Dex 40mg days 1-4, etc with tinzaparin injections everyday. I get the usual Dex moods 🙁 but I think I'm tolerating Rev ok – just the occasional slight cramping in my feet at night time and a bit of tiredness. My…[Read more]

Hi Helen.
Glad to see you enjoyed yourself in New Zealand.
I asked the same question about how long do I have to keep up the 3 litres a day a couple of weeks ago and got the same answer – forever! Fortunately my taste for beer has come back a little so that does help 😉 I was getting sick of just water and tea. So now I have a beer or two a…[Read more]

Hi Keith
Sorry that your fears have been confirmed. When we spoke at the support group you were very sure you'd relapsed. I'm on the Rev/Dex regime though not as maintenance as a treatment. Just started my 3rd cycle Saturday. Hopefully it'll do great things for us both.
Have a great time in Jersey and come back fighting fit ready to take on this…[Read more]

Hi David.
I'm on revlimid and dex as a treatment after all other treatments failed. I have just started my 3rd cycle. My paraprotein level came down slightly at the end of cycle 2 from 41 to 35. Not a big fall but it was in the right direction. I'm not getting to excited about the reduction because I've been slightly lower before. I do get…[Read more]

Hello Jen.
Welcome to the forum. Sorry that you have had to join but hopefully you will find plenty of support and advice. Multiple Myeloma is an awful disease that presents in many ways. Everyone's journey with MM is different and so is their treatment.
I was diagnosed in October last year and as yet have only had one lesion as far a I know.…[Read more]

Hi Jane.
Welcome to the forum. You will find lots of support and advice here. Good luck with your treatment and your fight against MM. I myself was diagnosed Oct2011 and have had my ups and downs with my battle with MM. It's important to listen to your body and if your feeling tired rest up.

Take care.
Andy xx

Hi Chris
Welcome to the forum that we would all rather we had never needed. You will find that we are all a friendly bunch and some a gold mind of information. Ask any questions you like and you will get honest and frank answers you will also get lots and lots of support. No two peoples journey along the MM road are the same we all react…[Read more]

Hi Paul.
If everything went according to plan – which I hope it did – you should be out of hospital now and recovering from the treatment. I hope you didn't/wont suffer to many side effects and those stubborn pp's have been given an a**e kicking.

Take care.
Andy

Hi Eve and Slim.
What great news Slim is back home.
Hopefully the road ahead will be smooth and pass quickly till Slim is into a long remission.

Wishing you both all the best.

Andy xx

Hi Teresa.
My bone marrow test wasn't too bad on Tuesday though the doctor had to go in twice! My blood test showed I was Neutropenic so that meant I had to be careful and try and avoid people with bugs. Today I went for more blood tests and also saw my consultant. My bone marrow test showed my healthy marrow had been cleaned out, hence the…[Read more]

Hi Paul.
I've had the DT PACE treatment. I only had one cycle of it though and it was deemed to be a failure for me. It didn't bring down my paraprotein levels but there again none of the treatments I've been through have been successful at lowering my levels below the mid 30's.
I coped ok with the DT PACE I didn't have any serious side…[Read more]

Hi Teresa.
I'm glad you had a good time at the brew pub for mothers day. I hope this weekend goes well for you and Peter with your children and grand children around you for the long weekend.
I go for my bone marrow test on Tuesday – though I'm not looking forward to the test itself it's the results I'm more nervous about.
We had a fun night…[Read more]

Hi Antoinette.
First of all welcome to the forum. None of us want to be here. You'll find lots of support and advice here in your journey and battle against MM. Everyone's journey and treatment is different. It's a very individual disease.
Myself I was diagnosed in October 2011 and I'm or rather my paraproteins are proving to be a challenge to…[Read more]

Hi Teresa
No not in the lake district till the end of next month. I've not been posting but I have been reading. I've been up and down with my moods – I'm blaming the dex effect. I've had my blood tests again today potassium is low again but everything else was ok. Dreading the result of my PP levels and the bone marrow test. It's about time I…[Read more]