The Colon Club

DH and I just left Cleveland clinic having spoken to a colon specialist.

She was optimistic although the MRI we had given the liver surgeon also Cleveland clinic want uploaded properly. She shared the same views as our local oncologist. 3 nodes probably are nothing given the extensive improvement in his liver albeit there's still to much disease to operate.

She didn't see a need to change chemo because typically the best results are seen after 3 months but she said DH is the exception his scans get better or have gotten better every 3 months. His body is reacting to three chemo positively.

And yet... She finds it unlikely we will get anymore drastic results and he could stay on chemo still his body can't do it. She was more than halt to suggest presenting his case the the board of surgeons to get other opinions including a director or liver transplants be present.

Christmas is a week a way and DH and myself aren't feeling very cheerful and I am desperately hiding on to the shreds of positive news I have left. I need uplifting I need real accounts of your struggles that you persevered through please... That's the best gift I found hope to get this season.

If his mets are only in the liver, please call MSK and try to get an appointment with Dr. Kemeny. The HAI pump could possibly get him operable.

hiker

You will be in my prayers this Christmas!

Praying for you guys and I would 2nd what Hiker said.

Dave

Yep- as hiker said... MSK dr. Kemmeny
Sounds like she is who you want for liver Mets

Think the suggestion of the pump is the best yet . Given he responds so well .
We have hit many disappointing bumps . I truely believe my mum is still here because we sought out windows of opportunity and grabbed them with both hands . If there is something out there that will help him further . Do what you need to do .
There is a big bump on the road . But the bumps are what we climb on .
Take care ,
Stu

I had numerous tumors (dozens) throughout my liver. I had a failed liver resection at MD And3erson (where I had my second opinion) because the liver surgeon opened me up and found dozens and dozens of tumors that were not visible on the C Scans I'd had. He told me that there was nothing that he could do so he closed me up. While recovering from that surgery, I had my records to sent to Nancy Kemeny at Memorial Sloan Kettering. She called me two weeks later and said she wanted to meet with me. I flew to NYC and she told me that she thought she could help me. Within a few weeks, I had a HAI pump and the colon tumor removed. Here I am 7 years later. She saved my life when everyone else said "just stay on chemo." Please....contact her.
Cynthia

Like your DH my body responded very favorably to chemo. I had major size reductions of both my liver and lung tumors at each scan. However, just like your DH, my local cancer center would not refer me to a liver surgeon. They basically said I would be on chemo for life (which they estimated to be 18 months).

I had a consultation with Dr. Kemeny at MSKCC and low-and-behold, her team said I was an excellent candidate for a liver resection and an HAI pump! All that steady shrinkage of my numerous tumors and the constant lowering of my CEA were indications to them that I had a chance. A few weeks after my consult I had a liver resection, and a few months after that, a double-lung resection. I wouldn't be alive today if it wasn't for them!

I've been in your head space. It's scary not knowing what will happen and even scarier not feeling like your doctors are doing all they can for you. Please consider getting a second opinion. There are places like MSK where they think outside the box and fight hard for Stage 4 patients. Too many cancer centers give up on us too fast. The sooner you see Dr. K the better since she likes to see patients when chemo is still working. An HAI pump could make all the difference.

Juliej

I want to thank all of you! You're all such strong people I admire you all. I don't really care what the board says at Cleveland Clinic in my mind I'm already done with them. They can meet they can discuss my hubby but I'm working on getting to NY!

If you get an appointment with Dr. Kemeny, it'll be the best Christmas present ever.

You'll most likely need a place local for chemo, so don't burn too many bridges. But if you're anything like me, the filter that's supposed to not let thoughts leave my mouth as spoken words doesn't always work (well, according to my wife it rarely works).

hiker

If finances are an issue, contact the American Cancer Society. They can be of great help with expenses, lodging etc.

Dave

hiker wrote:If you get an appointment with Dr. Kemeny, it'll be the best Christmas present ever.

You'll most likely need a place local for chemo, so don't burn too many bridges. But if you're anything like me, the filter that's supposed to not let thoughts leave my mouth as spoken words doesn't always work (well, according to my wife it rarely works).

hiker

I can relate although my out spoken moment in Cleveland was "you mean to tell me despite all his high numbers dropping, the dead spots you can see even from a bad angle, and the fact he continues to do well my husband has 30 months that is your best answer?" His actual chemo treatments are more local than Cleveland, they were consulting (assuming they would be our best bet BS).

We've been cleared for scheduling at MSK!

I am also Dr Kemeny's patient. I have been NED for over 2.5 years. I began my cancer adventure with 10+ liver mets. The largest 7.5cm. I had good response to systemic chemo. I was given maximum 2 years if I responded to chemo at diagnosis. I am still here dping good. I wish you a great consultation!