terminal or not??

[mike218]

2nd colon resection surgery planned in August was cancelled after they went in and saw liver tumors (not expected) so promoted to stage 4
and decided to put me on Folfiri (with 4 rounds of Avastin) and shrink or stabilize them
had MRI this past Thursday, saw surgeon Friday -was expecting date for surgery --still with tumor in colon and have at least 8 (prob 10-12 peppercorn nodules on liver )-very small, right and left sides, I mentioned SIR, he felt tumors to small to be treated yet with it
now surgeon saying keep on Folfiri, surgery not an option or not needed at this point-we actually asked is this going to be a chronic situation (maybe I should be happy) or is it terminal --he said we are all terminal, I don't think he meant anything harmful but he truly seemed on edge, we are very happy with him and the hospital (UMMC)-he will present to his tumor board Tuesday to see if anyone there would have another option, we see oncologist next week-routine visit
he offered/suggested a 2nd opinion to verify/alleviate our fears and suggested Univ. OF Penn-he will get us a name--we live in NJ (-not going to MSK-saw them initially as 2nd opinion in 2014-they suggested same course local oncologist was using, (and that it was fine with them to proceed with him) when we reached out to them in 2016 with new colon tumor , they said thanks but no thanks-because we had our treatment elsewhere
it just seems he feels why do surgery now when chemo keeping the tumors at bay--I just want them gone!!
Question:
anyone in this situation with prolonged Folfiri treatment
opinions Univ. of Penn

MIke

[WriterGirl1969]

it just seems he feels why do surgery now when chemo keeping the tumors at bay--I just want them gone!!
MIke

Hi Mike. Sorry to hear your staging was advanced to IV. I have no expertise in your specific question, but would say that if you are at all questioning the treatment and have a chance to get a second opinion, why not do that? At the most it could provide you with options, and at the least it would give you more peace over the decision. As good as any doctor or treatment center is, this is your life.

I was really disappointed to hear what MSK told you, but not entirely surprised. I've heard similar stories from others to that effect. Dana Farber in Mass is supposed to be EXCELLENT, and very compassionate. I don't know U of P, so will refrain from an opinion on that.

Whatever you decide to do, I hope that it goes well for you and gets you NED! Prayers and Hugs from me,
Tracy

[mike218]

WriterGirl1969 » thank you--sometimes your head just keeps spinning-got apt 1/4/17

mike

[ktwmn]

Mike, I think Brownbagger has been on prolonged folfiri with good results for years, although I think his mets were in lungs rather than liver. Perhaps he will chime in...

Definitely good to consult with other research hospitals, U of Penn is very good.

[mymom]

Have you contacted dr kemeny at Msk in NYC about HAI pump
Mom has stage 4
Diagnosed may 2011

[mike218]

just got news now they want SIRT----I think that's kind of "increasing survival changes" vs. cure

[Maia]

I'm so glad for you!!

[Rob in PA]

Not

[JDMNYC]

Not

That's what I'm talking about.

[Lee]

just got news now they want SIRT----I think that's kind of "increasing survival changes" vs. cure

Sounds like a plan. Hope it's successful and puts you in NEDville.

Lee

[jens22]

Think you should ask for a consult at MSK with Dr. Kemmeny. She is the who handles metastatic disease to the Liver and does the HAI Pumps that so many members have had sucess with. Being that you live in NJ...I would push this also. Its sad that they told you this, but if she reviews it directly you might stand a better case of getting reviewed.

[Lee]

Think you should ask for a consult at MSK with Dr. Kemmeny. She is the who handles metastatic disease to the Liver and does the HAI Pumps that so many members have had sucess with. Being that you live in NJ...I would push this also. Its sad that they told you this, but if she reviews it directly you might stand a better case of getting reviewed.

Yes to what Jen wrote, Dr. Kemmeny may be the route to NEDville.

All the best,

Lee

[kandj]

(-not going to MSK-saw them initially as 2nd opinion in 2014-they suggested same course local oncologist was using, (and that it was fine with them to proceed with him) when we reached out to them in 2016 with new colon tumor , they said thanks but no thanks-because we had our treatment elsewhere

MIke

I would try again. Skip the entire referral route and go right to Dr. Kemenys people. She isn't the type to give a crap if you went somewhere else first. If you fit her treatment protocol, she will see you (and by see you, I mean she will run your treatment, your total face time with her will be limited, lol). Dh's surgeon was Dr. DeMatteo and he is a life saver. Literally. He saved my husbands life. MD Anderson wouldn't touch my husbands liver with a 10 foot pole. Dr. DeMatteo put in the HAI pump, and 6 months later removed over 15 tumors/lesions. Some he removed, some he ablated. I don't know what the long haul holds for us, but we never thought we would be even here. And we are here because of Drs. Kemeny and DeMatteo.

[mike218]

thanks for going straight to Dr K--its an alternative .... will look into SIRT (after choosing location) and then Dr. K
fortunately my wife is a great advocate (better then I am)

mike