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good MRI, the war beneath the waves

tanstaafl's picture
tanstaafl
Posts: 1085
Joined: Oct 2010

The CT in March showed shrinkage (repeat old news).  The July MRI, including a high resolution liver scan and diffusion weighted scan for peritoneal mets is clean,  consistent with the March CT.  Relief.

This past year wife has had several small, brief CEA surges and some climb in liver function values.   The first CEA surge also produced a CA19-9 surge that has decayed more slowly, over six months.  The CEA surges jump up more than 5 std deviations from previous trends and decay quickly after a month or two but show repeated higher CEA values in the mean time.   Stuff like ....  2.1  2.3  2.2  2.1  2.3  2.1  then wham 4.2, 4.1, 4.0,  2.2 ....

This last surge showed possible transient signs of hypercoagulability.  Of course one only can know a transient is a transient in the review mirror of experience, after several anxious weeks or months waiting for more test results.   Once again I can't get as satisfactory technical answers as we would like.  Hope is that the fibrinogen is released from a necrosed met, rather than a growing met.  Scared by the low INR (potential embolisms), we have suspended the celecoxib for a few months, after a good five month run.  I have had to track down new biomarkers for myself.    D-dimer appears  reassuring for us - it is low and that means less chance of an embolism and the latter, bad stage of cancer dissemination.

The MCV suggests that immunochemo's treatment activity may still be improving.  However, too much of a "good thing" in MCV means potential for dangerous cytopenias later though (worn out bone marrow), such as happens with standard chemo.   Balance - not too much and not too little, even with immune stimulation supplements, is important.   Right now I think MCV in the 103 - 107 range, is a good target range.  Above 110, marrow damage has an increased likelihood of therapy related myelodysplasia syndromes or leukemias from longer, stronger treatments with less friendly molecules.

jen2012
Posts: 1492
Joined: Aug 2012

Hey Tans...I'm always interested to hear how your wife is. I don't understand what all this means tho...good news I hope?

UncleBuddy
Posts: 830
Joined: Aug 2013

tanstaafl, I am amazed at all the technical knowledge you have. I find it amazing how educated we all need to become in order to fight this miserable disease. I also hope this is good news. I'm trying to understand the simpler things, I think I'd be totally lost trying to figure out everything you're dealing with. Best of luck.

 

Lin

tanstaafl's picture
tanstaafl
Posts: 1085
Joined: Oct 2010

Thanks, it has been a full time+ effort to find more and better paths, and to choose carefully.  I strongly believe people can improve their own odds.

tanstaafl's picture
tanstaafl
Posts: 1085
Joined: Oct 2010

Jen, by any conventional measures, my wife is doing great, leading a charmed 2nd life.  No new visible masses, old ones stable or disappearing, no restrictions, no pains (except IV vitamin C pokes), no noxious side effects, CEA/CA19-9 at baseline or surges that return to baseline.  However, we walk a line between her maintaining tumorcidal activity and good long term health on "chemo forever".  Even the nicest 5FU chemo on the planet still wears on the body and immune system, where I am slowly learning to measure and evaluate "the wear" beyond normal clinical practices.

Despite much that has been dissolved by immuno/chemo or cut out, I am reseaonably sure she has living microscopic (<2mm) residue tumorous stuff, so not cured either.  Hence I sweat even minor CEA/CA19-9 surges - is something coming or going? 

I sweat to maintain healthy markers everywhere, all the time.   Any serious deviations could quickly spoil the party if allowed to spiral out of control.  

I would like to get my wife off the UFT (oral 5FU) chemo part sometime if we can control the residual cancer cells with immunotherapies alone, or more surgery. Otherwise chemo itself will certainly become a life limiting factor after 5-10-15 years, if not sooner.

jen2012
Posts: 1492
Joined: Aug 2012

Sorry Tans...I meant to comment earlier. Thanks for the further explanation. I'm glad she is well. You are an amazing caregivers...sounds like a full time job keeping up on all this. So what's the plan now...no surgery needed at this point right?

tanstaafl's picture
tanstaafl
Posts: 1085
Joined: Oct 2010

Yes, no surgery. We'll keep trying to manage the anti-tumor activity at a high plateau.     

Chelsea71
Posts: 1170
Joined: Sep 2012

That all sounds really positive, Tans.  You're obviously a wonderful caregiver and a loving husband.  You're wife is lucky to you.

 

Chelsea

tanstaafl's picture
tanstaafl
Posts: 1085
Joined: Oct 2010

Thanks Chelsea.   We've learned to appreciate each other more. 

annalexandria's picture
annalexandria
Posts: 2482
Joined: Oct 2011

and your wife too, of course.  Sounds like she's doing well.

AA

smokeyjoe
Posts: 1428
Joined: Feb 2011

I don't really understand all you've written, too technical for my brain.   But, sounds like she's doing well.   All your research is very interesting, keep on  posting I love reading them :)  

smokeyjoe
Posts: 1428
Joined: Feb 2011

I don't really understand all you've written, too technical for my brain.   But, sounds like she's doing well.   All your research is very interesting, keep on  posting I love reading them :)  

tanstaafl's picture
tanstaafl
Posts: 1085
Joined: Oct 2010

Thanks, Ann and Smokey.

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