Whoops half of my post is missing I wonder why? Sooo right now I am in Hammersmith Hospital London as my cancer numbers rose after only 3 weeks off drugs,

Hi Tracey
I finished the initial treatment 6 weeks ago but did find the 5th and 6th cycles the wort with very weak legs, shakiness, constipation and numbness (neuropathy) in my toes. I was off work for 7 months as I was diagnosed with a fractured collar bone but managed to return to work this last month off treatment. Staying home every day was…[Read more]

Second night in Hammersmith hospital…etoposide didn’t start till 4:30pm so will have a disturbed night as new chemo has to be connected every 2 1/2 hours. Saline drip 24 hours so here till 1:30pm tomorrow at least. Anti nausea tablets and IV steroids seem to have kept nausea away so…..all OK at the moment. Start injections Friday and have…[Read more]

I use an ipad and also get the internal error notice…annoying! Also frustrating having to remember to click the box each time I post to be notified of follow up replies by email.

Tonight I go into Hammersmith Hospital, London for the first step of the stem cell collection….10 hours of chemo….very anxious about his amount of toxin entering my body. How ill am I going to be? Transplant tentatively scheduled for early January.

Paraprotein now up to 4 (was 0) and lambda light chains 252 (were 61) I am so frustrated…[Read more]

This has not been offered to me here in London, but Tom mentioned in his post that it had been suggested to him recently. The American Myeloma Facebook page had quite a lot about it recently with concerns expressed about the amount of radiation and the usefulness of the test. From what I understood it seems to have fallen out of favour in the U.S.

Carol

Finally have result from 29th November…..paraprotein now 4g/l so creeping up steadily. I am soooooo anxious about the high dose chemo this Wednesday. Taking the oral chemo tablets was difficult psychologically, but the thought of this chemo poison flowing directly into my heart for 10 hours via the Hickman line is doing my head in!

Carol

Oh no! But you still must feel blessed with your 4 years in remission and drug free……let’s hope I manage that long. From all I have read, Velcade seems to be very effective. In fact, that is what I was going to have if I had transferred to a clinical trial at University Hospital. Given that my numbers are rising after only 3 weeks off CTD…[Read more]

Thanks Jean I have emailed the transplant doctor asking if I should have these tests before collection….makes sense to me. Because my light chains and paraprotein started rising after only 3 weeks off CTD I feel they are now rushing me into SCT. On Monday I will have been off all drugs for 6 weeks. Paraprotein was only 8 on diagnosis in…[Read more]

Thanks for your replies. I think have managed to resurrect a more positive approach. Hickman line was inserted last Monday; parmidronate tomorrow, 10 hours of etoposide Wednesday and stem cell collection on the 23rd. Haven’t managed to get my most recent paraprotein results from blood test on the 29th November, but lambda light chains dropped a…[Read more]

What fabulous news David!

Carol