Hi Phil
I have a Medic Alert bracelet, which also comes with a small credit card info leaflet.
My reason for using this system is that the bracelet clearly displays my diagnosis, stem cell transplant ,risk of GVHD ( graft versus host disease if given non- irradiated blood) and my allergies.(11 words total) with my registration number in the UK…[Read more]

Hi Susan

Welcome to the discussion group. Although I haven't been on here for a while I can vouch for the valuable support that being able to air concerns with others can bring when facing daunting situations like you are.
I have MM, had 4 cycles of CTD before my Stem Cell collection and transplant in April last year. Being 9 months 'down the…[Read more]

Hi to you all and to Charlie(welcome to this lovely support group) for starting the discussion.
Haven't been on for a while as am in the phase of recovering from stem cell transplant 14 weeks ago. It is an interesting journey but have learnt to take it slow, especially as the SCT slowed down the recovery I was making from a fractured leg last…[Read more]

Thanks Tom
I don't know what happened and how my post got to the middle-gremlins in the system?
Today feels better than yesterday even though I have to do the nebulizer at the Hosp this afternoon.Perhaps my cough might go as a result– we can only hope!
Carpe Diem
Carol x

Hi all,
Just catching up with everyone! It's now 3 weeks since my Transplant. On Friday it will be my birthday and also my 1st month birthday! I've been at home just over a week and am feeling very weak – husband doing all the caring ( bit of a shock for him how much I need at present ) -however I can feel a slight improvement each day and the…[Read more]

Hi Guys
The trouble I have had with Dex has been the weight gain,especially around the face and upper abdomen (and it's not all chocolate related). Luckily that is going down now I have finished my CTD but the muscle atrophy is a problem especially as I am still trying to get over my broken leg from 10 months ago and need to be exercising before…[Read more]

Hi everyone, I haven't posted on here for a while as I had been busy building up to my stem cell harvest 2 weeks ago,which then clobbered me for a week or so afterwards with just the enormity of the whole thing and the physical after-effects.Luckily my GP is good and put me on mild anti-D's to calm the nerves.
Luckily the harvest was good with a…[Read more]

Hi Linh

Glad to be of assistance! I tried almost everyone recommended before found World First and agree with all your comments about their helpfulness. They even insured my mother-in-law when we took her Spain last Easter for a very reasonable amount.She had been refused insurance by other companies, just because she had got to the cut-off age…[Read more]

Hi Tina and everyone
Sorry you had to join the 'merry' band of dancers with Myeloma, but hope you find,like me,that the support through the discussion group is invaluable.
I start the build-up to Stem Cell collection this Friday coming,with planned admission, fingers crossed, for SCT on either 10th or 16th April. The good news is that,if…[Read more]

Hi Peter and Welcome,
I too came off CDT 2 weeks ago and initially felt great, although I had an extra weeks' additional antibiotics to go due to an infection in a healing broken leg between cycle 3 and 4. However I am now feeling much slower,things are becoming a bit of an effort,I'm having difficulty sleeping (I found that I got a decent nights…[Read more]

Hi,
Many thanks for your replies Helen and Tom. I'm actually feeling quiet good at the moment, but in a funny way miss the Thalidomide from the CTD as it helped me sleep! In an odd way I'm looking forward to getting on with the rest of the treatment, but not the potential dangers that go with it. It's also good to be forewarned that it can take a…[Read more]

Hi everyone
Just to let you know that I have used World First for the last 2 years.They have given me an annual multi trip insurance ,but they do not insure for USA,Canada,and the Caribbean, and have been very reasonable with a declared myeloma,and a broken leg added on in the summer. At present we have put a hold on the policy as I am awaiting…[Read more]

Hi everyone
I ' ve been quiet until tonight! Christmas was lovely but hectic with all my lovely kids, their husbands, children etc– 4 boys under 4 and a half, but great and very noisey! .However Christmas day was a 'dump day' so a real effort, luckily they all cooked, and the food looked lovely but my right knee/ leg which I broke earlier in…[Read more]

Hi Nicola,
I'm the other Carol (I think there are 2 of us), and I echo the other comments about the poo problems with your Dad, Micky -not nice for either party involved ( I say that as a patient and as a nurse) and I hope they are all resolved now.
On the fund raising side, my eldest son,Michael Jr ( cos his dad is Michael as well) decided off…[Read more]

Hi bikerchris,
I have been quiet for a while, but welcome you to this very supportive and exclusive band of people who dance with MM. This is not a text book disease and affects different people in different ways. The enormity of your diagnosis also cannot be taken in in one sitting- and can be very frightening if information is collated from…[Read more]

Hey guys
I've had some good news today-my consultant so pleased he sent me the results. My Kappa free-light chains have dropped from 190 to 12 with just one cycle of CTD , lower than they have been for 18 months or more. I've always been just above the normal level of 3-19 and they started shooting up st the time that I broke my leg 6 months…[Read more]

It's been a few weeks since I have posted on here.The days seem to run into one another! I am on week 5 now with the Thalidomide dose doubled when I saw my Consultant. Having said it was OK two weeks ago, I'm now finding that my body responses to the steroid 'dump day's are becoming more challenging and lasting longer, possibly as a result of…[Read more]

A catch up. I'm now into my third week of CTD and finding it ok- have kept a detailed diary of my daily responses to tablets so can work out highs and lows and plan days I.e. Window cleaning and sorting out stuff on steroid days, and plonked in front of pre-recorded television on steroid dump days. The only blip so far has been a cough that took a…[Read more]

I've just realised what SCT is – and yes that is planned after 4 cycles of CTD ( it's surprising how quickly the acronyms creep in! ) and providing that I have a good response. Sounds as thought that is when all the hardwork starts -so a long way to go!

HAKA means challenge! This is what myeloma is !!
Caro