Hi Tom
Have a great holiday! I had trouble logging on as well a few weeks ago, but seems to be OK now. Good luck with your treatment when you start. I am still waiting for transplant appointment.

Carol

Hi Izzie

I was diagnosed in April 2013 as well. After initial therapy with CTD (cyclophosphamide, thalidomide and dexamethasone) my paraprotein was undetectable, but 3 weeks later when I was transferred to Hammermith Hospital London to start the transplant process, my paraprotein had
already crept up to 4. However they still went ahead with the…[Read more]

Thanks Lynne

I am sitting waiting nervously every day for my next appointments at Hammersmith Hospital, London. I am also anticipating transplant in January.

I discovered a website last night “Anna Bandana” that has lots of different scarves, hats etc for chemo patients, with very reasonable prices I thought, so I have ordered some. When I was…[Read more]

Thanks Michelle and Lesley. I am at the point of being totally fed up sleeping with hair all over my pillow and as you say Lesley, everywhere else and I haven’t even got to the SCT process yet. I am also worried about my rather large nose! But after the holiday on Wednesday I am going to see if my hairdresser will shave it all off. That’s if I…[Read more]

Thanks Chris, Tony, Vicki,

Thanks for your positive rsponses.

I have just turned 64 and apart from myeloma am/was healthy. All I want is to feel “normal” again and to be drug free. It seems that the SCT is the only way to achieve this. I need to stop reading the U.S. myeloma information where some of the doctors are saying that a SCT isn’t…[Read more]

Hi Gill

I think Xmas is a difficult time for many, even if, like me they have not suffered a loss like yours. I have my husband here in London, but the rest of my family are in Australia and I have been very teary, feeling sorry for myself as I view their posts on Facebook. Usually at Xmas time we escape from this grey, dreary city and go on a…[Read more]

So to all of you experienced patients….a question. Was the SCT worth doing? I am running out of time to back out now, but I am so scared that I will endure the transplant but not get much time in remission. Of course my decision making is made more difficult by the fact that after only 3 weeks off CTD my paraprotein returned and lambda light…[Read more]

Hi all

Stem cells collected today..first attempt..4 hours…I am pleased. Still no date for transplant.

Carol

Thanks Tom you are a treasure! Always supportive.

Carol

I don’t think they have found a strong genetic link, (although my dad died from leukaemia so I do wonder) but i do know of an Australian man and his mum who were diagnosed the same month!

Ask to have your blood tested so that you can remove that worry from your life and concentrate on your dad.

Carol

Hi Frances

I have met a 69 year old man who has just had his second transplant (he had 8 year’s remission from the first) so if you are healthy otherwise and feel you want a transplant i would recommend you get a second opinion. Is your haematologist a myeloma specialist?

Carol

Hey 70 is not that old any more…i am 64! A strong immune system is a help in fighting this disease according to recent Australian research. I believe that the less antibiotics etc you have had in the past should help. A lot of the information on the Internet is out of date and it seems that some (but not all of course) people live many years in…[Read more]

Hi

I agree it is an awful shock to be told you have cncer and true there is no cure at the moment, but as my consultant told me on diagnosis “If you have to get cancer this is one of the better ones as it is manageable.” I am just a relative newbie too, just moving towards my first stem cell transplant, but you will find many people on this…[Read more]

Hi Chris

Your upbeat post gives me hope. I am going through the stem cell collection process currently (chemo Wednesday, first injection yesterday…..yuk!) and so want to be “normal” again. Is that really possible?

Carol

Finally escaped from hospital at 9 o’clock last night as pharmacy delayed our departure. Just administered first growth hormone injection in my stomach..yuk!! Also have to take antibiotics for 14 days. Right now I am aching from top to toe -must be from all of the drugs and lying around in hospital….chemo, steroids, anti nausea both through…[Read more]

Hi Nick
I only managed 3 weeks of remission after CDT and have just had the high dose chemo (etoposide) and will be starting injections tonight for stem cell mobilisation. Transplant early January. So far so good, but side effects from the chemo will continue over the next few weeks.

Carol

Twice this morning only part of my post has been published….very frustrating especially after a sleepless night in hospital!

Carol