[CarolsymonsParticipant]

Sooooooo annoyed! Just received blood test results from 10 days ago when I was just 3 weeks from finishing CTD. Bloody paraprotein is back to 3G/L when it had been undetectable since September. Pesky light chains have jumped from 61 to 315, so despite other cancer numbers being normal….iga, beta globulins and having only 4% myeloma cells in the bone marrow biopsy (I had 25% on diagnosis in April this year) I am now only in partial remission.

Stem cells to be extracted Xmas Eve and transplant early January. Why couldn't I be one of the lucky ones and have the cancer leave me alone for a few months at least! NOT HAPPY!

Carol

[tomParticipant]

Hey Carol
Its good to let it know how you feel it just might shove it to the background and not forgetting a "Partial" is better than None and your treatment is still in the early stages 😀 stick with it Carol and am sure you will soon shove it away.

Its a rough ride but it is a doable young lady 😎

Love Tom Onwards and upwards xx

[dickbParticipant]

Well Carol, you're doing better than me and a few others, my paraprotein dropped from 52 to only 31. That's after 1 attempt at PAD – caused major liver problems, 1 course of Revlimid – same reason and 3 cycles VCD. I am still going for stemcell and have started with the harvest but I know my paraprotein levels have to be as close to 1 as possible prior to reintroduction of Stemcells for the whole treatment to be succesful.

As Tom says, you still have a partial which is better than nothing at all.

[CarolsymonsParticipant]

It must be very frustrating for you with the drugs not bringing your paraprotein down and you are so much younger than me-at least I feel I have lived my life and what an adventurous life I had! My children are all grown up but I have the sweetest new little grand daughter in Australia and I so want to see her.

The transplant doctor assures me the chemo before collection will bring my numbers down again….is that what you have been told? I really do not want to go into the transplant with paraprotein and light chains showing in my blood work as research indicates that relapse will be sooner…..common sense tells you that I guess. I know my paraprotein was low at 3 but that was 10 days ago, it is probably higher now and chemo is still another 10 days away. Maybe I will have to do a course of Velcade before the transplant ……really do not want more drugs!

Carol

[meganjaneParticipant]

Hi Carol,

I can understand your frustration and worry but hang in there. My husband Phil's paraprotein only got down to 5 before his stem cell transplant. It then took another six months for it to get to 0 after the transplant. MM is such an individual disease it is impossible to know what will happen. I know this doesn't make it easy but try and stay positive and remember there are new drugs becoming available that may one day make this a chronic disease. Not everyone gets to 0 even with a SCT but as long as the disease stays stable and does not cause damage to the bones or the kidneys it will be a good result. There are some people who are classified as smouldering with PP higher than 3 so remember the PP and FLC are just two of the things that measure the disease but lots of other factors need to be considered as well.

Stay strong and good luck with the harvest.

Megan

[dickbParticipant]

What a lovely little grand daughter you have, I do worry about our daughter, she understands I am not well and we tell her things on a need to know basis but it is very possible I won't see her grow into adulthood. But, I cannot alter what happens, I can only try and last as long as possible for her and my wife. Now as Megan Jane says, it is more important that the illness is stable because it then isn't making things worse. There are people we meet in the local support group who have had 11 – 12 years of remission and there is no reason why we can't achieve the same. I suppose the key is a positive attitude and a will to see through what you want. I know that doesn't guarantee anything but if it's not there to start with then why bother.

I'll stop lecturing now, hope I didn't hit a raw nerve.

Richard

[andygParticipant]

Hi Carol.
My paraproteins started at 49 in Oct 2011 tried all the usual treatments and my PPs wouldn’t go below 35 I’ve now been on CRD for 22 cycles now and the lowest reading I’ve had was 12 for one cycle only I’ve been around 20 for most of the time. No chance of auto or allo transplant for me my last reading was 31 so movement to my next treatment is imminent possibly pomalidomide. So to date I’ve been on full strength chemo for 26 months with all it’s side effects. I would love not to take any more drugs but I’d love to see the New Year in more. So I’ll do whatever it takes to extend my life as long as possible.
I do hope that you get to a long and drug free remission post SCT Tom is a great example. Hope for the best and fight for it as Richard say a positive attitude will help greatly. “Why me” won’t help at all. Even I’ve managed to avoid that so far lol.

Every days a gift
Well worth fighting for.

Andy xx

[CarolsymonsParticipant]

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 little, so perhaps paraprotein did too. For now I am pretending it has! Still no date for SCT but doctor thinks early January. Anxious times!

Carol

[CarolsymonsParticipant]

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

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