That’s fantastic news David, makes us all feel more positive.
Alison x

Hi David
did your consultant consider and rule out a DVT (thrombosis)? If not and it’s still swollen and tender I would get a medical opinion promptly as they can be nasty and like Ann said easily dealt with.

Kind regards
Alison

Hi Rebecca,
before my SCT my creatinine was averaging 400 and my urea around 20. I would say it has improved since my transplant. I did not have dialysis during the SCT but they were very careful to give me lots of IV fluids and a modified dose of Melphalan.
I think the important thing is not to feel rushed into a decision.:-S Do you see a…[Read more]

HI Jackie
I'm sorry that your Mum has had this diagnosis and it's such a shock for the whole family.
I was diagnosed two years ago and was on dialysis three times a week for a month. My blood levels improved by 50% and I was able to stop dialysis and although I have poor kidney function it's enough to get by on so that's ok! Hopefully your Mum…[Read more]

Hello Rebecca,
I was diagnosed with IgG Lambda myeloma two years ago and my kidney function was extremely poor – creatinine 1000. I joined the Eulite trial and had extended dialysis (which I was able to stop after a month) and Velcade. My creatinie levels came down to about 500 and my renal consultant felt it was unlikely that I would see any…[Read more]

Hello Jane,
welcome to the Myeloma club, no one wants to join but its very friendly and supportive. It must seem overwhelming to you and your family, it is hard to take in all the information as you learn about this condition..
I was diagnosed two years ago and have had CTD and recently a stem cell transplant. The hard thing was trying to…[Read more]

I've experienced some loss of concentration and a sense of 'vagueness' since my chemo.(Or it could be my age!) I caught the end of a discusion about it on the radio recently which I think was saying that it was a recognised condition but more research needed to be done. The effects wear off eventually but it seems to be variable. I did find this…[Read more]

Hi Tom

what a pain that you are back on chemo, it's feels such a slap in the face to be back on treatment and 'reminded' that we have a condition to cope with.
Hope you will soon be feeling your positive self again. I was on PAD last year and apart from the usual dex effects (dex-fx !) I had no problems at all.
Hope it will be the same for…[Read more]

HI Tina
that's great news about being in remission (not about the itchy rash!)I hope you have many trouble free months ahead.:-D
love Alison

I hated the highs and lows of dex. I was so jittery on the 40mgs they halved the dose. Then when I complained of tremors and the low feelings they also tailed off the last doses over 3 days i.e took 10mg, 6mg, 4mg rather than 20 in one day, it did help!

Hi
I'm sorry that you got such a horrid 50th birthday present! I found this forum so helpful and hope that you will too. As Jean said try to enjoy your birthday and be hopeful for your future because the outlook for people with myeloma is getting better all the time.
Love Alison

Your results sound similar to mine. My last potassium was 4.7 and my eGFR was 14. I don't eat whole bananas but I might put a few slices on cereal. Ditto oranges and tomatoes,(not on cereal!) only one cup of coffee a day if that. I remember when I was on the renal ward and I asked for a cup of coffee there was a shocked hush before I was informed…[Read more]

Hi Steve,
I've been lucky re dietary restrictions as I don't have any at present. When I was first diagnosed the dietician put me on a low potassium diet. I queried it with her saying 'most people with cancer are encouraged to maximise their fruit and veg intake, lots of fresh organic stuff etc, and you're telling me to eat 3-4 portions and well…[Read more]

Dear Sue,
yes it's true that district nurses rarely do 'personal care' any more, if necessary you can have carers to help with that (but you may have to pay). If you can speak to the Macmillan nurse on Monday she can advise you on what help and services are available.(If you have to wait for an appointment, get back to your DN and ask her to…[Read more]

Dear Sue,
I am so sorry that you and Michael are suffering so much. I am a community staff nurse (district nurse)and I recommend that you ask your GP to make an urgent referral to your local DN to get them round ASAP.
They will assess all your needs and act as liason between you, the GP, Macmillan nurse etc. They will visit as often as you need…[Read more]

Glad to help celebrate good news. I too will have been diagnosed two years ago this January. Life is very precious and celebrations add extra sparkle! I wish you a Happy and Healthy 2013.
Alison

Hi Steve
being diagnosed with Myeloma is a serious and scary thing but I hope I can offer some reassurance. I was diagnosed two years ago aged 48 and my kidneys were failing (creatinine over 1000). I was treated with dexamethasone, Velcade and doxorubicin and was on dialysis for four weeks. I was able to come off dialysis and my kidney function…[Read more]

Hi Kes
I was diagnosed nearly two years ago and it certainly has its challenges!I did find that being able to stay at work (thanks to a very supportive manager)and trying to do 'normal' things really helped me.

I think everyone copes in different ways according to their personalities and what support they have. If you are assuming that…[Read more]

Hi Jo,
I've been on epo for over a year and once you get used to giving yourself injections it's not a bother at all. The company that arranges the deliveries is Fresenius Medical Care and they are very organised. I have mine delivered to my place of work and they are packaaged in a cool box to keep them at the right temperature. They also…[Read more]

Hi Tina,

I'm glad to hear that you're responding well to the CTD. I'm waiting for my blood results taken on Weds. I know we're on the same cycle so I think of you when I'm wide awake at 4am on dex days and anticipating the low days probably Tuesday!! The energy swings are hard to aniticipate aren't they?
Stay well,

love…