Hello everybody
I have not been encouraged by Doctors etc, to contact other people with MM I suspect because it seems to have many stages and everybody seems to be different. I live on the Isle of Arran in Scotland so have to travel to the mainland for treatment. I am 57 I have 3 childen 20,23,& 24 . Diagnosed in August 08. I am on my 5th and last 28 day cycle of chemo/dex and monthly pamidronate drip. I only had thalidomide for the first month as they thought I was having neurological symptoms. I am going for chemo and to start the growth hormones for stem cell collection, on the 8th feb.
I havent had an easy time on the TABLETS especialy the withdrawls from the dexamethazone also that taste in the mouth ug.and constantly feeling slightly off balance. I have 2 weeks in the month when I take no tablets and I start to feel about normal at the end
Though the consultant at the Beatson Hospital in Glasow in charge of the stem cell transplant had to give me worse case senarios (its funny how 6% seems so much larger than 94% ) I must say nobody has said to me you have only a life expectancy of x number of years they have said from the start if all goes to plan you will have treatment with tablets for 6 months , then you will have a stem cell transplant after a year you will be on no tablets and you will be in remission for 3-5 years but we know someone on Arran who is in thier 11th year of remission. So far all is going to plan !!
Its been good to read what other people have gone through and know I am not alone.
Margo
FormerMember
Welcome to the 'club'! I'm glad that you found this site because there are others who are all going on similar 'journeys' and will be happy to support you and give you their experiences. There are also a few who have been given "sell by" dates who have gone on a lot longer! I hope all goes well with your treatment.
Hello Margo. i was diagnosed in April 2008. like you the details at first were sketchy to say the least. Even now no one will say i expect you to live X no of years. Maybe thats because Myeloma is a condition that affects so many people in different ways. And that it's how we respond to the treatment that counts.
I had six cycles of the CTD treatment and am headed off for my harvest on the 9th of February. So we aren't that far apart from each other.
There are a few Myeloma patients on this site and I hope you can find some of them. I found the chat worht while, but I realise it is not for us all. We all seek our support from different areas, but I have met fellow patients that have Myeloma there.
Good luck with the harvest and the transplant, if you want to moan, groans, shout or just chat please get in touch
My husband Ken has myeloma too, he was diagnosed in Feb 08 and has had his stem cell transplant end of October and feels great. We are doing really 'normal' things now except foreign travel, and this time feels so precious now he feels well. I remember the stage you're at with the chemo etc as being more draining than we realised, until it stopped and he felt well again, so it's good you're nearly at the end of the chemo stage. I hope you are well today and it isn't too snowy up there - we have about 8 inches in North Yorkshire but it's fluffy and actually good fun except for travellers!
Keep in touch and do join the groups section as it makes it easier to keep up with everybody!
You are right about treatments being so varied. Treatments for Myeloma are all so new and still developing, except for the Stem Cell Transplant which has been going on for a decade or more, but the complimentary therapies in conjunction with the SCT is what is new and different. The game is to get it in remission and keep it there. I wish you lots of luck and on the Myeloma Group that you have joined there are several links that may be of interest to you regarding Myeloma. You can all so follow my husband's saga at our caring bridge website. www.caringbridge.org/visit/davidpuente.
Be brave, hopeful and focused on your care and recovery. There are lots of good people here to help with the low points and appreciate fully the high points. Best, Lori
So you have had the pre chemo and growth hormone injections ready for the the harvest of stem cells?. I suspect how long I will be in hospital has something to do with my blood results when I go in on the 8th of Feb. but I would be interested to know how long you were in hospital for this part of it. I phoned the hospital and they couldnt tell me as my consultant is only there one day a week- so I will just have to be the patient patient -something am not good at but learnng fast!!!.
