[SamM]

Re: Relapse after autologous stem cell transplant - options?

by SamM on Sun Nov 09, 2014 10:28 pm

Hi Cheryl G

Thanks for your input. The summary is pretty close to accurate.

CTD; "good results", but stopped due to PN
(how many cycles?) (what sort of response?)

I was on CTD for approximately 18 month.
Free lambda light chain started in late 2009 at 968. The light chain had normalised by July 2011 at 25.20 and stayed in the normal range (23.80 in Nov 2011). My heart thickness and condition improved and I was walking an hour a day and working full time.

2012: Relapse TD, "no luck" (how many cycles?)
3 Cycles 2 X 50 MG a day of thalidomide and 40 mg dex a week. FLC in the 30s between Dec 2011 and July 2012. Up to the 50s to Jan 2013.
CyBorD for 5 cycles, "no luck".
By May 2013 the FLC had jumped to 119, July 2013 to 138, Aug to 153.

2013 (November): Autologous SCT

2014: Lambda FLCs jumped from 34.33 (May) to 209.55 (August)
M-spike in August: 0.97 g/dL

Late August
Started Revlimid (10 mg) and dex (40 mg / week) (First Cycle)

Late September
Revlimid dose increased to 15 mg; dex dose kept the same (Second and third Cycle)
FLC last result Oct 2014 at 262.68.

I am currently on the last week of the third cycle and this treatment regimen is hitting my heart real hard where my heart markers had jumped to 845.6 pmol/l and creatinine to 216 umol/L.
We had discussed other treatments where melphlan and dex was mentioned.

Thank you Cathy and Cheryl
Sam

[antelope1225]

Re: Relapse after autologous stem cell transplant - options?

by antelope1225 on Mon Nov 10, 2014 10:11 pm

You know, Sam, the one thing I thought unusual was that you were not given anything between your SCT in Nov 2013 and this summer. Is that right? I was put on Revlimid 2 1/2 months after my SCT.

Did Dex bother you as much back in 2009 through 2013 when you took it? It looks like you were on Dex with Thalidomide and Cyclophosphamide for 18 months and then just Dex and Cyclo for another few months.and then Dex with Velcade and Cyclo for awhile.

Do you think it is the Dex that is bothering your heart the most? I wonder if you could take Revlimid without Dex? That might be easier on your heart until your Lambda FLC's come down..

Remember that a human body is amazing in how it will try to heal every time it gets a chance. So, if you could get those lambda FLC back under control, your heart and kidneys might get a bit better.

[SamM]

Re: Relapse after autologous stem cell transplant - options?

by SamM on Fri Nov 14, 2014 9:27 pm

Hi Cathy,

I've just completed the third cycle of Revlimid and dex. I see the cardiologist next Tuesday and the oncologist on the 24th November. Decisions and the way forward will be driven by the results.

If we decide to stay with Revlimid (?), I will ask the doctors about dropping the dex.

The doctors have started talking about an allo transplant.

Regards,
Sam

[antelope1225]

Re: Relapse after autologous stem cell transplant - options?

by antelope1225 on Wed Nov 19, 2014 10:42 pm

Hey Sam,

You should have had doctors appointment yesterday. Hope it went well.

I just heard about something that is supposed to be good for the heart - vitamin K2. You can get that from Brie cheese, Gouda cheese and kimchi.

[SamM]

Re: Relapse after autologous stem cell transplant - options?

by SamM on Sun Nov 23, 2014 3:29 am

Saw the cardiologist last Tuesday, who was concerned about the condition of my heart. She will be pushing for an allogeneic transplant sooner than later. She asked me to stop taken metoprolol (Toprol, Lopressor, Metrol, Betaloc) and Cartia (low-dose Aspirin, for blood thinning), and I must admit I do feel a bit better already.

Thursday the oncologist calls me, as he had received the last blood result and he was concerned about the heart markers, kidneys and the liver, as they had worsened. But he had one good news, which is that the lambda light chain had gone down from 262 to 136.

So, based on the light chain result, I will struggle with the current treatment regimen (Revlimid & dex) for another month. I will see the doctor on Monday and I will discuss the option of dexa­metha­sone.

I will persevere (as much as I hate it) with the current treatment, as I am confident that the lambda is going to come down to normal by the end of this cycle.

Sam

[antelope1225]

Re: Relapse after autologous stem cell transplant - options?

by antelope1225 on Mon Dec 01, 2014 4:15 pm

Hi Sam.

I am glad your cardiologist had you stop taking metoprolol and Cartia and glad you are feeling better.

You know, if those lambda free light chains are going down from 262 to 136 that means your heart and kidneys are not getting hit so hard by the lambda free light chains.

I found an interesting interview that explained how Revlimid works (by making fewer blood vessels in the bone marrow).

I put a link on the Revlimid thread but here it is again. Revlimid (lenalidomide) is anti-angiogensis. When the speaker shows the slide of things that are most effective, I think the Revlimid was second most effective of anything they have discovered.

http://www.ted.com/talks/william_li