Welcome Lisa, sorry you had to join us. My husband I'd just finishing 6 cycle of. CDT with the hope of getting a stem cell transplant. As Peter said the steroids react differently in people and he is right – don't troll the net, I did when Frank was first diagnosed and it scared the life out of me. This is the place to be to ask questions and…[Read more]

Thanks for that Jill. When I saw his legs I nearly had a fit. An elephant had nothing on him!! I remembered reading some time ago on the forum that someone had had swollen feet and legs during treatment. I hope your mum is doing well
Love Jea x

Hi Emma

Fantastic well done. How is you dad. Hope things are going well for him

Jean

Hi Cathy
Good that he is home. It is 14 months since my SCT and my taste buds have not recovered yet. I suspect they have gone for good.
Love Helen

Dear Peggy
I suspect all will be revealed tomorrow, usually a full medical 'work up' will start from tomorrow, bloods, hiv tests, ECG, X-ray consent etc and full instructions on gcsf injections which you will probably be taught to do for yourself. Not everywhere does cyclophosphamide priming, but gcsf is usual as a first treatment to get the stem…[Read more]

hi Peggy

Well all I can say is when we went up to Kings and went through the procedure with a doctor,nothing went as he said,different appointments came through some were done before stem cells taken some after!!!! Must admit i felt as confused as you,we had a similar conversation,after what we were told and what did actually take…[Read more]

Hi Nicola

Thanks for that and I will have a look. I have been massaging his feet with cocoa butter. He is in good enough form today but feet and legs are badly swollen. Frank finishes his 6 cycles of CDT in three weeks and if they suggest more treatment – don't know what he will say.

Hope your dad improvement increases every day.
Best…[Read more]

Hi Cathy

Nice to hear from you,Ivan has had a rough time of it so it might take a bit longer than most to make a recovery,Slim is 5 months past SCT and is only just starting to gain weight,and still is occasionally sick.

What sickness tablets is he on??? Slim had a few different ones,its hard to eat when ever thing taste awful,if you cannot…[Read more]

Thanks for the info Eve. I have coco butter so will give that a try. As far as the scrabble – I am playing with an old school friend who lives in Australia, and that is where I get some of the weird words. One game was so unusual I took a photo of it and sent it to my son in Kent. He also had never heard of some of the words. I used to look the…[Read more]

Hi Jean

Sorry can not help with the low temperature, but Slim had swollen feet,as Tom said you can get socks with loose tops it helps,I use to use Coco Butter Milk on Slims feet,a massage ever night use to help,got the circulation going,swollen feet are painful.Needs to get those feet up high a pillow under his lower legs of a night,but make…[Read more]

Hi Vikki and Colin

Just popped in to wish you the best,you do not need it though,you both seem to have the right attitude,will all be over in a months time,and although it will seem a long time to get back to good health,you do get there.Eve

Hi Wendy, Well done, it's a bit scary doing the patient thing, I did the Newcastle one in March and found it quite terrifying! I'm most impressed by all your activity holidays too. I'm really quite indolent, no energy at all really, I expect its the cough and going back to work. It is getting better and I'm more inclined to do things but I'm…[Read more]

Vikki best of British luck for Colin on Monday. Hope all goes well. Will cross everything

Love Jean xx

Dear Vikki
Just to say good luck to Colin and yourself for Monday, many pjs, baby wipes, tissues and a lip salve at the ready? Ice pops in the freezer? Large pile of towels, face cloths etc for daily changes, and an extra carrier for the dirty laundry:-0, iPod iPad, phone and charger, book? All packed? Ok then you are ready to go, hope it all…[Read more]

Mary I cried most of the way through the counselling. I couldn't (and still can't ) cry in front of Frank. He has enough to worry about without seeing me upset. So when I talked to the counsellor it all just came flooding out. It's great to talk to someone who is not affected with Franks illness who will not judge me about anything that I say. I…[Read more]

Hi Mary

I have been screaming and ranting for 6 years. I have been to counselling twice and it really helped me. As Frank hopes to start STC soon I am feeling it all build up again (he's had a bad time with the CDT) I will be making an appointment to see one again. Don't know if you have been offered or even tried it but I felt it was a life…[Read more]

Hi Chris

Great to hear that things aren't too bad. Hope it continues ad you are up and running soon

Vikki and Colin good luck for Monday. Sending you good vibes

Love Jean x

Hi Andy
You will get there,it sounds like a good idea to me,crack on up wards,might be worth talking to Shirley on hear,I know she has had one.
Look at Myeloma Beacon Survives people on there have been going for many years,they say it,s the nearest thing to a cure.Eve

Hi Chris

Good to hear from you and glad that you are feeling 'pretty good'. Hope everything goes great for getting the cells back. Oh Chris I have recorded Dallas and was saving it for bed tonight!!!never mind will still enjoy it. I'm old enough to remember the original Dallas and trying to decide who is the meanest the younger original JR or…[Read more]