[tishwishParticipant]

Hello
My husband was diagnosed in May 2011, he has had CDT course of treatment and a SCT in Dec 2011. He is now recovering well. The consultant has said that he fallen between a stringent control and a partial result, however he has stated that he will never be in remission. Having seen some of the comments on here about people been in remission, i am rather confused.

Thanks Trish

[tomParticipant]

Hi Trish

Well I had same in 2009 and I am in remission (well thats what am told) and have been since before my SCT it was the CDT that put me into remission.

Good Luck on Hubby's treatment and recovery.

Tom "Onwards and Upwards" xx

[tishwishParticipant]

Hi Tom

Thanks for your info. Peter has been told that he will never go into remission, but his blood levels are good. He is having Zometa every 4 weeks and will be on that for the next 18months or so. He is still on Co- trimoxazole and lansoprazole

Trish

[HelenParticipant]

Hi Trish
Welcome
If your partners paraproteins are zero that's remission, if they are very low in comparison with his starting levels (ie gone down from about 30 to 6 ) then that is partial remission. Bone marrow biopsy also can show low levels or absent disease. The idea is that they stay zero or as low as possible for as long as possible. We all understand that this is a different, unknown length of time for each of us.
Does this make sense? You need to ask what the numbers are each time you go to the clinic.
Love Helen

[tishwishParticipant]

Hi Helen

Thanks, have had a quick look at website of World First. Peter's levels have come down from 80 to 6, which means then he is in partial remission. I was quite confused because the consultant told us that he would never go into remission and then seeing reports on here about people in remisssion. I understand it now.
We do ask and keep a log of all his blood levels

Thanks Trish xx

[HelenParticipant]

That's ok, we just have to do all the things we can while we can and for as long as possible:-) Helen

[tomParticipant]

Hi Trish and peter

Your welcome, I also had Zometa every four weeks for two years post SCT. struggle to find a vien near the end though Lol.

All the best

Tom "Onwards and Upwards" xx

[DebsParticipant]

Hi Trish,

I had my SCT last summer, and my paraprotein came down to 2. My bone marrow (another indicator of remission) was undetectable – well the abnormalities were!!

They class me as having had a Very Good Partial Response. Because my pp isn't zero, they can't class it as total remission. But in reality, I am in a sort of remission as I am stable now and they are really pleased with how things look. The reality is that people who achieve Full remission, don't necessarily stay there as long as those of us who feel cheated at the beginning by not reaching zero.

It sounds like Peter is doing pretty well so if possible, I'd try not to get to caught up with figures. I was desperate for the revlimid that I am on as maintenance to bring me down to zero, but have now just accepted that '2' is my number!!

Good luck
Debs x

[tishwishParticipant]

Hi Debs

Think i am getting my head around the figures and remission and partial remission. I do agree that we have to accept Peter's 6 as been very good. When i remember how ill he was in January 2011 he has had a very good recovery.
We did ask about revlimid too but Peter is not eligable for it.
You take care and good luck

Trish xx

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