Topic: Stay the course. Update from our consult visit.

Our visit to Memorial Sloan Kettering on Friday was good, not great. The doctor was very pleased with Lynn's progress. He said a few times how much better she looked and how important it was that she was feeling better. He noted clear signs of reduced size of her liver tumors. He also agreed with the plan of more rounds of Gem/Cis treatment. We were glad about this part of the discussion.

What was a bit disappointing was our discussion regarding other options, trials, etc. He did not think Lynn was a candidate for their own trial with the hepatic pump because of the lymph nodes. Even though the inclusion info suggested a person with affected lymph nodes could still be considered. I am planning to contact the sponsor next week.

A second question regarding immunotherapy also led nowhere as he felt it had not shown positive results for GI/colon cancers. He was polite during all this and said we could look at these types of options down the road if chemo stops being effective. Then he said the dreaded phrase, which we all picked up on. He said this is about "quality of life". It felt to all of us that he was fully focused on the present. However, I can’t stay in the present. I need to be looking for what’s next. I believe we all had high expectations, maybe too high, so this discussion just didn't feel good.

Nothing has changed with this visit. We are still moving forward with three more cycles and hoping for continued improvement. This emphasizes even more to me that we drive our own plan as much as possible and look to these doctors for affirmation, consults, and administration, but not as our advocate. That's our job.

Carl

Re: Stay the course. Update from our consult visit.

Carl,
As a patient with the pump, I can tell you it is not a new treatment. Many places no longer use a hepatic pump. The part that is new is the added drug (I forget which one). The chemo thru the pump is really strong, and getting the pump requires major surgery, with possible smaller procedures (embolozations) to get it to work. It is NOT an easy treatment plan. The chemo used is so strong many livers cannot handle it (mine was one). The side effects are few, as long as treatment is not too toxic to the body. But if the liver reacts, a patient can often spend days in the hospital.
I don't want to sound like a downer... Just wanted you to know there might have been another reason he didn't think it was a good idea. And, yes, the pump only leads to a major tumor. They did not know I had mets to lymph nodes until the surgery was performed.
We are no longer using the pump. I received 3 treatments of FUDR before it was deemed too toxic for my system. I am also no longer under the care of Sloan Kettering. I now go to Fox Chase in Philadelphia where they are running a clinical trial using an inhibitor drug. I qualified, and am glad to be prolonging my quality of life! Everything so far is stable! My onc here is Crystal Denlinger.
Good luck with the treatment plans, and keep searching for the right course of action for you and Lynn.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Stay the course. Update from our consult visit.

Dear Carl, I am sorry that the visit to Sloan did not end up with what you were hoping to hear, although the beginning sounds more hopeful.
Thanks Kris! Carl, I met Kris in June for the 1st time and she is one of my Heroes.  She has been through a lot and OMG she looks like the picture of health. Nothing stops her or gets in her way. And she has given you another Hospital to think about. Everyone is different and cases are all diff you just have to find what fits. You are a wonderful advocate for your wife and I know you will persevere. You know already to please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Stay the course. Update from our consult visit.

Thanks to both of you for your insight. Especially about the challenges of the surgery. And we do feel that staying the course right now is a good plan.

We saw Dr. Denlinger as well during our initial set of second opinions (we went to both Sloan and Fox Chase). I was very impressed with Dr. Denlinger. I was even thinking of contacting her and sending her the recent CT as well.

We actually felt good with both second opinions. We continued with Sloan because we felt they were able to offer more options. And we are still comfortable with Sloan. As mentioned, I guess I am too anxious. I want to be ready for the next phase - probably the engineer in me.

Hope you have a great day.
Carl

Re: Stay the course. Update from our consult visit.

Hi Carl,
I understand your anxiety... you are wanting a concrete plan administered in a timely fashion with a generally predictable outcome. That's what is so difficult and anxiety inducing about this particular type of cancer...it's so variable as are the treatment options and responses. I too find myself worrying about the future of my sister and her little boy but I am trying to stay in and enjoy the present with her. Not too hard since she happens to be doing ok right now, even at stage 4...she's made it almost a year and feels pretty good. She chose not to "spin her wheels" second guessing her Stanford docs by getting multiple opinions (because it would require more decisions to make, she knows little about medicine and she was afraid to delay treatment) so she puts her trust completely in her doctors at Stanford. She doesn't research CC or participate in this blog as it is too scary to her hearing what others are suffering or horrible stats and so she copes mainly by trying to focus on home improvement projects, parenting and on organizing the mountains of insurance/medical paperwork. Ironically, she has sort of listemed to friends who insist on outrageous and even dangerous cures (like laetrile aka vitamin B-17) while literally begging her not to do chemo ("its poison pushed by doctors and 'big pharma' to make money!" they tell her).  I vehemently insist she run anything by her Drs and look at the scientific facts.  Im more analytical and so can't stop searching for scientifically proven answers and ideas, even though my sister may not qualify for many of the treatments out there. Hang in there, Carl, you're not alone. Many, like Kris and Lisa, and Cathy are great examples if survivors who roll with the changes CC brings, treating it like a chronic condition.
Willow

Willow

Re: Stay the course. Update from our consult visit.

Hi,
If I am a fish man, I will sell you the fish I caught.
If I am an oncologist , I will tell you what I know the best and skip the things that I am not sure . Do you think they have time for another field of medicine.
When I went to ASCO, most people attending the seminars are researchers, well known doctors in their own field and presenting paper; and I can say more than half of them are foreigners, Chinese,Japanese,eastern Europeans and Indians from the far east. students, sales rep etc.So may be just a few of the doctors who practice oncology will be there. I think most of them get info from the tumor board of their hospital,discussion and journals they subscribed.
Have you talk to one immunologist and see what will be the case.?


God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Stay the course. Update from our consult visit.

Carl,
I'm sorry our talk was cut short, but it was such a wonderful surprise to see my friends at my door!!
What a great day this turned out to be! They brought me a scarf from Dubai and a mechanical pencil that looks like a syringe! Lol
I hope I answered most of your questions and concerns... Call me or write whenever!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.