I had my SCT June 2007 aged 42 and still in remission. I had a really bad case of mucositis from the Melphalan requiring a Morphine drip so from day one oral hygiene would be high on my list of recommendations. The anti sickness tablets were wonderful, I was not sick once. Low red cell count after treatment caused tiredness and shortness of breath…[Read more]

I presented with kidney failure due to Myeloma but was lucky enough not to need dialysis. Have his kidneys made any recovery?

Mike

Hello Tony,

I well remember the roller coaster ride when first diagnosed just before I was 42 and one of the things we both say looking back is that searching the internet at the time for information gave us both more to worry about. I have recently turned 50 and I am still in remission after a stem cell transplant in June 2007, the treatments…[Read more]

Have you contacted the hospital about your throat? I am 49, 7 years post SCT and if I feel a cold starting to take hold I get on to the Dr or hospital for treatment, the head consultant at St.Hellier told me to do this in order to prevent a cold progressing to pneumonia which I might not recover from.
You are not alone with being scared, I was and…[Read more]

Hello Nick,

I will be 50 next year and was diagnosed early due to kidney failure cause by the Myeloma, like your Mother I have little bone damage due to the early diagnosis and I am now entering year 8 of remission since my SCT. You are spot on with the treatments having vastly improved, 45 years ago it is doubtful I would have lived this long…[Read more]

Hello Denise,

I know little of Smouldering Myeloma, how often is your husband monitored?

Mike

I had an ultrasound of my kidneys prior to Myeloma diagnosis as I presented with renal failure. Once diagnosed Haematology took over treatment and I am monitored by a joint Renal/Haemotology consultant alongside Haemotology.

As to the leg pain, the feeling I remember in my legs while on treatment I can only describe as having excess energy like…[Read more]

Hello Don,

I like your sense of humour in the face of adversity, where are you being treated?

Mike

Tony, I envy you; “can fall asleep at the drop of a hat”.  🙂

I’m 49 with light chain over 7 years, SCT 2007 and still in remission. I hope you have been diagnosed early, where are you being treated?

Mike

I was on the list for a kidney transplant preparing to have fistulas in my arms and weighing up the options of peritoneal dialysis when the Myeloma (Lambda Light Chain) was discovered. With treatment of the Myeloma the kidneys recovered to around 30% and have remained there for over seven years so far. I was your age when diagnosed.

Mike

I’m 49 and seven years in remission after a stem cell transplant in 2007. I would echo the above comments about searching the internet as there are so many variables with each patient.

Mike

Hello Treakle,

I was diagnosed in 2007 just coming up to 42, had the chemo and STC (Stem Cell Transplant) that year and I have been in remission since. We gave up looking at the internet at the time as there was so much information to take in from the hospital let alone all the added problems the internet was adding. I had a Hickman line in my…[Read more]

Hi Eve,

Well if me posting on here helps even one person it’s worth my while doing so, 6th July was D-Day and the day I went in for my STC so as that has passed I’m past the 7 year mark.

I liked the Marsden too but had a couple of strange experiences there. After 3 weeks in and one day home I wanted to go back! I guess that is what some call…[Read more]

Hi Val,

That’s eerie, too many sames! Where do you live, it might be the water? I was told that to have Myeloma at my age put me in a very small group of sufferers around 2-3% of the total and I was surprised to see an under 50’s group on here with so many members. How bad is your bone damage? Mine seems to be confined to my skull from the X-Rays…[Read more]

Hi Craig,

Doesn’t sit right with me saying welcome to the forum but I’ll say it anyway! I’ll take a guess from your screen name that you were born 1969 which makes you 4 years younger than me, I was diagnosed 2007 and started the same roller coaster ride you are currently on and I am still in remission. Can I ask what the illness was in 2013 that…[Read more]

Can I ask what prompted this friendly reminder?

Hair growing back? Now that’s just showing off Superman! I struggled with clinical depression post SCT and one of the anti-depressants I was prescribed had a side effect that reduced my white cell count. Great fun those tablets were, 2 weeks or more before they take effect and to get off them takes about the same time gradually reducing the dose.…[Read more]

Hello Carol,

I was looking at the remains of my Hickman line I kept after removal only yesterday clearing a draw out! I kept it as a souvenir as I lived with it so long and was such a long job in removal, nearly an hour and they were preparing theatre, the cuff being the problem as it had bonded into the skin so well. Some time later a friend…[Read more]