Mike

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]

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]

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

Mike

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]

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

Mike

Mike

Mike

Mike

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]

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]

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]

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]

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]

Well you’re a bit of a Superman in my books bouncing back so quick. You also just put a smile on my face by reminding  me of getting back on my feet and feeling brave enough to take my Triumph Speed Triple out for a ride. 🙂  Do you get up the Ace Cafe for Classic Car night?

Mike

Just read through your posts on this thread, do you have a big S tattoo’d on your chest? 🙂 I struggled a lot longer recovering from my SCT and I was 42 at the time. I did exactly 21 days in The Marsden, the home option wasn’t offered so must be something new since 2007.

Mike

PS Is that a Stag or PI you are leaning on in your avatar photo?

Let’s hope Colin’s remission continues and the treatments also keep improving as they have over the years. I was told the average age for MM was 70 in 2007 and to have it at my age put me in a very small minority of sufferers. They took enough stem cells at the harvest for another transplant and the way things are going they might go…[Read more]

I usually see two specialists when I attend St.Hellier, any one of the Haemotology team and one of the Nephrologists, Dr. David Macanjuola. We were discussing my creatinine level yesterday and over the past two years it has been trending up slightly but has been fairly consistent since the SCT between 180-210. I have just tried…[Read more]

I hadn’t looked at it that way, perhaps you’re right. The only contact I have with other patients is at St.Hellier and because I go every 3 months I don’t often see the same people as they might be on 2 monthly visits. Come to think of it I only saw one member of staff yesterday that was there when I had my treatment, Nicky the…[Read more]