The Colon Club

Im going to throw this out here. We have been to 2 good Cancer Centers. I get the impression that they follow certain protocol and if that’s not good enough, then it “feels” to me, that they cash their chips in. This how I honestly feel about my Wife’s situation. To me in this day and age that is unacceptable ! Sometimes, I feel that it is a false sense of hope from these well established centers. However, it does makes my wife feel comfortable going to the BIG joints. But something and I can’t put my finger on it, Im worried as all heck. Is their enough being done in the colon cancer arena ? Is their places that people turn to in an effort to find a life extension/cure in a desperate situation ? We are new to this just…. into completion with the first 12 rounds of Chemo. I am so frustrated with the more I investigate, the worse my mind and my soul gets in turmoil. Foremost, I want to say I mean no dis-respect to the people that have moved into the Lord’s Arms and the immense fight for the right to live they have all fought. Dear Lord, is their an institution that will get the helluva out of the Box and try something that has promise. How do we get out of this Box !!

There's always the trials. Lots of new things coming along all the time. Research the clinical trials post on here. It can be overwhelming and scary. Hang in there.
Hugs
Teri

sdino wrote:I get the impression that they follow certain protocol and if that’s not good enough, then it “feels” to me, that they cash their chips in.

sdino, in the US big hospitals are especially concerned about lawsuits, because they have tons of money.
There are armies of malpractice lawyers salivating every time they hear about somebody dying.
Cancer Centers by the nature of this disease have a lot of people dying.
Following established protocols is their main defence against US lawyers.
As a result doctors are required to follow all protocols and guidelines to a letter.
Nothing personal - strictly business.

If I read your signature correctly it sounds like your wife has had a really good response to FolFox + Avastin - if so that is great news.
Are you hoping for a surgery for the lung and colon ?
Maybe you could explain what the Dr's are suggesting going forward ?

AT

sdino wrote:... Since we are now a patient of one of Sloan’s Dr’s, we can now call them anytime, set up an appointment and be matriculated into their system. We agreed that basic Chemo/Bloodwork, CT Scans will remain at Roswell. When it comes to the Next Step in my wife’s treatments, Sloan will be consulted and they will advise on the next course of action...

sdino -

You mentioned earlier that MSKCC would advise you on the next course of action and that you would have another meeting with them sometime this month.

Have you had that meeting yet? Have they come up with a plan? Have they told you what they are waiting for?

Maybe you could ask the Sloan Dr. to outline the contingency plan that they have in mind. They might be waiting to get the most recent bloodwork and scans from Roswell before deciding what to do next.

Hi Achilles, yes FolFox+Avastin currently has been very good to us. As of today, visit w/Onc, we will do 1 more chemo treatment at end of April then a CT scan in May. Then it will be a decision with our Onc at Roswell with Final approval from the MSKCC Onc on the treatment Plan moving forward. (possible chemo break) My frustration lies with really nothing has been addresses or discussed about the lungs. I understand the waiting game with CRC, but I guess I have to train myself to be more patient. So we are trying to educate ourselves about lung surgeries (not worried about colon tumor yet)…. As u can see from my wife’s sig, small multiple lung mets will need to discussed at some point.

Hi Jacques – Yes we had our first apt w/MSKCC. Essentially they are in agreement with Roswell’s approach with nothing discussed about lung mets. MSKCC will advise and approve all proposed treatments in the future. We have a follow-up with Sloan once we complete chemo and CT scan in Mid May. I do like the idea of tasking the Sloan Dr. to come up with a contingency plan.
Believe it or not, since I joined this Forum, first I found out about VATS, then investigating this further, we found out that Roswell has a VATS surgeon on staff. My Onc @ Roswell has made no mention of that … weird ! Also, we have been in contact with Dr Rosenburg’s Nurse at NIH/NCI but that’s another day if chemo goes south on us.

I want to thank you both to responding to us. Looks like we still have research to do. Thanks, Be well !

sdino wrote: My frustration lies with really nothing has been addresses or discussed about the lungs.

In my experience, the doctors don't want to mess with multiple, widely spread lung mets. If there are under 5 nodules, the doctors may start to discuss VATS, SBRT or RFA. But with 14 nodules, they will probably stick with chemo. A different chemo regime for your wife may kill some nodules and get her to the point where a thoracic surgeon or an interventional radiologist would consider treatment. Otherwise it's trying to keep the nodules stable. I have 16. I switched from Folfox + Avastin to Folfiri + Erbitux and my first post chemo CT scan showed some response.

Thank you MyPink for your response, exactly what Im thinking. That mindset has gotsta change in my opinion. Im going to TRY in the near future to change my Onc’s mindset on this. They should be pulling all stops when the iron is hot. What the hell am I going to wait till she has 45 nodules ???? There is where our concerns are. We have had good response so far from chemo, but the end game is Foggy and it makes me very worried. Thank you, and I hope the very best for you.