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tanstaafl's picture
tanstaafl
Posts: 915
Joined: Oct 2010

Three years out...we just got a second reading on her latest CT scan.  Everything stable, with some shrinkage or disappearance.   Blood biomarkers mostly back in the low end, slight rise in liver values.  However she's gained a lot of weight this past year, too much eating out and comfort food combined with less exercise after a knee injury.  

The original scope of her mets emerged slowly - the things in the lungs and in liver are spoken of more presumptively now, although they have not been biopsied.  Some have virtually disappeared.   The peritoneal seeding after removal of necrosed tumors from the mesentery almost 3 years ago has not re-emerged (per radiologists and surgeons' relieved, even enthusiastic comments).  No additional para aortic lymph nodes have surfaced anywhere since the conglomerated PALN cluster was removed 22+  months ago.   

Our journey has been quite different, welding diverse treatment regimens of Japanese chemo R&D, generic drugs, diet and supplements together.  Treated at home, she goes out or with friends as she pleases.  We are done debating outside opinions.   She only talks to the surgeons, me and the alternative MD, we also get her radiology and lab reports directly.   We are seldom bothered with the insurance, too small and restrictive, maybe 1-2x per year.  Her regimen is adjusted based on research and blood testing. We recently, finally, added a generic like Celebrex to help keep the biomarkers down.  

The most notable thing about my wife is that she is never sick, chemo, surgery or cancer wise.   She takes a **lot** of specifically chosen, targeted supplements throughout the day, as well as her generic chemo meds.    She doesn't go out for chemo, a small box of UFT is delivered monthly at home and a slender pack of leucovorin tablets.   There are no meds for the usual nausea-dirrhea-stomatitis-blood-etc problems.   The only emergency trip anywhere was after the first surgery, when she cut out of the hospital two days early, and went to the mall.     Another notable is that she should hit the 500 mark on IV vitamin C at the end of the summer. 

We are a curiosity to some.  For example, recently her personal blood tech asked her about vitamin D injections (she doesn't, just high strength oral).   It's been 18 months since she pegged out the reading of their automatic analyzer (it doesn't have a special dilution feature) so we don't get serum levels of vit D there anymore.  Perhaps they are still watching and puzzling over her blood levels. 

Our one slow motion debate is chemo forever vs more surgery pre-emptively.  

manwithnoname
Posts: 383
Joined: Jun 2012

stable ,shrinkage, disappearence,  are there any sweeter words?

tanstaafl's picture
tanstaafl
Posts: 915
Joined: Oct 2010

Thanks, Tony.  It is sometimes hard to remember that "cured" is possible.

jen2012
Posts: 1137
Joined: Aug 2012

Hi Tans...Im glad to hear your wife is doing well. Shes lucky to have you researching and getting treatments for her.

Chelsea71
Posts: 1157
Joined: Sep 2012

Fascinating. Congratulations to both of you. You seem like a wonderful husband. You're lucky to have each other.

Chelsea

smokeyjoe
Posts: 1428
Joined: Feb 2011

Wonderful news Tans ..... your posts always have me asking you questions ...." generic Celebrex like " ..... is this an over the counter med.  or prescription??? 

tanstaafl's picture
tanstaafl
Posts: 915
Joined: Oct 2010

"like" refers to generic. Not all countries are still under the thumb of branded Celebrex and that less expensive generics are available e.g. 200 mg Celebrex cap discounted to $5.80 in the US, might be a $0.10 generic in asia.  In many countries, prescriptions are easy, cheap and not especially important for nonnarcotic drugs.  The primary US patent expired over a year ago.   

annalexandria's picture
annalexandria
Posts: 2040
Joined: Oct 2011

Making it three years in a stable state is something to be proud of.  You've clearly done a lot to make that happen.  What would be your wife's surgical options if you were to do this pre-emptively?

Ps That link on the chemo your wife does is interesting...mentions that some have done it for 11 years, basically non-stop.  That's amazing.

tanstaafl's picture
tanstaafl
Posts: 915
Joined: Oct 2010

We don't have any formal option with the surgeon right now (haven't been in this year), although he has indicated a lot of general interest before.  Basically my issue is how much her CEA could be reduced if we remove a lung nodule or a liver target, for both removal and biopsy.  I think that there are  1-2 CEA sources over background.  I figure that for her to achieve a curative result her CEA will probably stay around 1 and she is usually in the 2's.

Success might come in two possible levels, some CEA improvement and a live site removal might mean willing to reduce chemo eventually, 10-25% would be an improvement.  An apparent cure might enable us to drop the UFT altogether.   Chemo forever, like that 11 year example, even with the nicest 5FU on the planet is a little daunting.  Any 5FU can't be good for mental acuity, eye sight and immune function through the retirement years.

Of course, she's not eager for any more surgery short of the "gunpoint situations".  In my eyes, any surgery that will be needed in the future, if possible at all then, would be better when she's younger and the target smaller.  Another consideration is that we have a highly capable surgeon now that seems to give us maximum credit and opportunity.  His words last year about my wife's situation were, "In this [hospital], outside this office, no one will believe you." (already been there, done that with the oncs) Anything happens to the surgeon, and we're back in the middle of the street looking at Drs No, again.  

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

Your wife is very fortunate to have you by her side.  Congratulations on the success of her treatments. -- C

renw's picture
renw
Posts: 284
Joined: Jan 2013

Just curious, have u ever tried your personal regimen without the systemic chemo?

Also could you PM me the details of the regimen you use, just in case I missed sonething. :) thx.

tanstaafl's picture
tanstaafl
Posts: 915
Joined: Oct 2010

During the first 4 weeks before surgery and 6 weeks after surgery, substantial but still "incomplete" supplements only with no chemo.  Took that long to figure out what to do about chemo. Otherwise, in retrospect would have started chemo at 10-14 days after first surgery.   There were substantial responses with necrosis and improvements before chemo but not all tumor material necrosed. You might want to look at my "about me" page for more details.  Pls email me.

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

congrats! great to hear this news!!!

hugs

judy

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