[adminKeymaster]

Morning All

I was diagnosed with IgA lambda light chain MM and Amyloidosis in February and am currently halfway through the third cycle of CTD. I send a blood sample to the National Amyloidosis Centre at the Royal Free in London every month and they monitor my free light chains. After two cycles, my light chains are now within normal range and there is no trace of paraprotein, which is great news! I have an appt at the Royal Free at the beginning of June, but it looks like I'll get away with just the four cycles of CTD. When I was at the Royal Free in February, I was told that I was a 'long way off a stem cell transplant'. I was unsure as to what this meant, but didn't question it as there was so much going on.

Yesterday, I spoke with my research nurse about it and he explained that for many MM patients, 6 months chemo followed by SCT is the standard treatment, but for those of us with Amyloidosis, they need to be more cautious because of the organ involvement. I have amyloid deposits in my kidneys, liver and spleen. Although I have nephrotic syndrome, my kidney and liver functions are currently normal. They like to see an improvement in the organ side of things before rushing in with a SCT. He did say that harvesting and freezing the stem cells now would be an option with the possibility of a SCT later down the line when the free light chains start to rise again. He also said that there are patients who achieve a 'complete response' by CTD alone and maintain it for years, without a SCT.

Has anyone achieved and maintained complete remission on CTD alone without going down the SCT route?

Tea etc

[BADGERParticipant]

Hi Sharpy

I have had two years remmision fingers crossed it lasts a lot longer,
didnt have an SCT due to major kidney damage had CDT for four months follow by a year on 100mgs thalidomide hope this helps.Para protien last month was in a band to fient to measure

Love Jo 😎

[DaiCroParticipant]

Hi Sharpy,

I started my CDT treatment in July 09 in a bad way with kappa light chains at 3,500 -they came down to 'negligible' after 2 cycles, complete remission after 3 and remained so after the 4th 'to be sure' cycle.

My consultant was adamant that I should press straight on to my SCT but I was not so sure because it took two attempts, including a scary week neutropenic with a temp off the scale because of an infection picked up from my Hickman Line (which had only been put in that day) before they managed to scrape 2.1 million stem cells, giving me one shot.

I felt so, so well that I asked for the SCT to be postponed until the first signs of relapse but was told that the SCT was the only real way forward. I had my SCT 3 moths later (after the second attempt at harvesting) and I was told to expect a decent remission based on my CDT recovery and my SCT
uptake in 10 days. My SCT lasted 10 months and as so has been considered a failure.
I am now on my 1st cycle of Velcade (2nd infusion today) but if I could go back I would rather have followed the CDT remission to its end before going for the SCT.

I am sure the consultants know what they are about but I am getting so frustrated that such an individual disease is dictated by finances and treatments laid down by NICE that I have to question our true input into our disease.

Dai.

[MinParticipant]

I am with you Dai, I often wish Peter had not been put thru the SCT part, as he was doing so well on the CDT.
To be made so ill, by the SCT with no guarantees of how long it will work if at all. (Particularly in my husbands case when he only got 5 months) I frequently wonder if he would have had a better outcome on a very low dose of of CDT instead of going for it before he had reached zero.
Its history now, and I wish you luck with the velcade and hope you respond well
Min

[AMcGuireParticipant]

Hi Sharpy

YES!! Is the answer to your question :o)

My husband John was diagnosed December 2006 with Amyloidosis and Multiple Myeloma.

He started CTD in March 2007 and went into remission in September (after 6 months of treatment). He was NOT eligible for a SCT as he was so ill, like you he had amyloid deposits and was not expected to survive the 6 months of treatment as he was so ill at the time. He sends blood samples to the Royal Free hospital, London, every month also and flies down (we live in Stirling) every 6 months for his scans.

Anyhow, he only had CTD and achieved remission. His first relapse was a couple of months ago.

Hope that answers your question.

Sending love
Angelina

[DaiCroParticipant]

That is good to hear Angelina… I hope John's next treatment works just as well

I recently met a woman at the Nottingham infoday who had responded well to treatments but not to the SCT. I believe she managed 18 months after Velcade and five or near six years on Revlimid and still going strong. There's hope for us all. 😀

Dai.

[adminKeymaster]

Thank you all for your comments. I feel much more positive now with the let's wait and see approach. Dai, there's a definite logic to what you are saying in that if CTD achieves a good remission and you feel well, why the need to press on with a SCT immediately? I hope you get great results with the velcade. It was good that you met that woman in Nottingham who continues to do well after velcade and Revlimid – stories like these give much hope. Jo – so glad to hear you have done so well on CTD alone. Angelina – an amazing story of how John has got on over the last 4 years and obviously one close to my heart with the Amyloidosis complication -I do hope he can get back into remission quickly.

Thanks again everyone.

Tracey x

[DaiCroParticipant]

Hi Tracey 🙂

Sharpy is fine, Tracey is better. 😀 😎

Dai.

[adminKeymaster]

Thanks Dai! Not sure what happened there. I did sign off as "Tracey" in my original post, but instead a random reference to "tea" appeared instead. Bizarre! 🙂

[cinziaParticipant]

just wondering how things are going with you now Tracey…

[scott9Participant]

Hi Tracey,

Like Jo, my kidneys were too damaged for SCT. I achieved near remission and am on maintenance therapy now so SCT is not the be all and end all for myeloma. In the US they seem to prefer to do without SCT as it is still a lottery re how long it would help.

Good luck

Scott

[adminKeymaster]

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