Different Diagnosis' !!!!!!!!! Crazy

[Pita]

This is one of the posts that got lost this weekend. Hoping Grouseman will respond again.
Check my signature out please so I won't explain what each test showed. Has been one year since my diagnosis on 01/21/16, still have 6 nodules in lungs, 1=3.5cm, 1=2cm, 4 smaller. I still have my hair except for eyebrows & nails grow like claws. How time flies when we're having fun. NOT

Opinion #1, 2, 4 and 5 PET of 01/31/17 was compared to CT of 11/08/16.
...#1 Opinion: Oncologic Radiologist RK: Said everything looks good, shrinkage on all. Also there was not a new nodule as stated on 11/08/16 CT report.
...#2 Opinion: Oncologist VP for past year: Looked at 1/31/17 PET report, said 4 small mets shrunk, 2 bigger ones grew but he didn't know why, SUV hadn't increased. Wait for opinion #3 before deciding on treatment. NO lung cancer, should have read metastasis to lung from rectal tumor.
...#3 Opinion: Oncologist DL says my cancer has increased by 19% and Avastin is failing. Cancer cells have antennas out looking for a source to attach to. Not sure what to think about this theory, he is highly rated. Joined a chemo trial, see other post about my trials.
...Back to Oncologist VP, he thinks Onc DL is wrong and that the Avastin is working and is worried that I've been off chemo for 3 weeks 01/24/17. He made arrangements to sit down with the Dr. Radiologist VPO that read my scans and made the reports for a year.
...#4 Opinion: Back to Oncologist DL, I backed out of the chemo therapy. He reread scans. He still thinks Avastin is failing due to larger mets growth. PET compared to latest CT is barely any growth but still growth. Joined an immo trial, see other post about my trials.
...#5 Opinion: Back to Oncologist VP, he sat down with Dr. Radiologist VPO that has read most of my scans the past year, all was explained to Onc VP on a giant clear screen and report matched. Except Onc VP forgot to ask if the 11/08/16 scan showed a new nodule of not.

So...I consider the opinions: 2 Avastin working and 2 Avastin not working, not going to count #1 because of personal reasons. Should i go for another opinion? Had first chemo on 02/21/17 with Avastin and Folfuri so as to not worry too much. Joined a few trials talked about in another post. Forgot to mention CEA rose by over a point, not much but I have been consistent for months, could it be due to no chemo & Avastin was working? A little bronchitis since Oct 2016? Stress over all of these crazy opinions?
Not sure what else to say except staff at Onc VP said she admired me for reading all of my reports, etc. and that I am a "challenge" to Onc VP since his other patients just nod yes or no. Hubs said she was lying, they all think I'm a PITA, haha that's my name! I thank all here for showing me the way of what to read and answered my questions and loooonnng posts and taught me so well to stand up for myself and I'm so grateful for all of them, especially mypinkheaven, for letting me vent to her out of here. Will try to do a post about the trials, if not tonight then tomorrow. Hugs and prayers for NED to all. oxo

[teri3]

Wow!! Crazy is right that confuses my poor chemo brain just reading that!! Continue being a PITA, sadly I've found majority of the time YOU are the only one to stick up for yourself. I have no real input just hang in there and continue in your PITA ways.

HUGS
Teri

[GrouseMan]

OK PITA - Ill try again. Its hard to say what they expect to see from Avastin. The idea is that it starves the tumors of sustenance (a Blood supply), and that helps keep them under control and stable. Avastin by itself doesn't really kill cancer cells. Its a Monoclonal Antibody that suppresses blood vessel growth. But larger tumors often get around that especially if they are near larger vascular objects. They secrete factors that start to make these vessels "leaky" So of course Avastin may not stop this situation. They almost NEVER give avastin alone. I note you have had it with Irinotecan and 5-FU. I would think its these two that are failing, as they are the agents that are truly responsible for killing the tumor cells, Avastin, just tries to limit their invasion into other tissue and to starve the tumor if it can. My wife started out with FOLFOX plus Avastin, then about 18 months with just 5-FU and Avastin. When her CEA started to rise, flags went off but initially the CT hardly showed anything. It took very careful comparison from when the new mets showed up and the previous CT to see that yes - the earlier CT you could just barely make out a new met as her CEA started to go up. So next course was Folfiri and Avastin. Well - that didn't seem to works at all. CEA still started to creep up slowly. This is when her oncologist added her to a small trial to see if a combination of Irinotecan, Erbitux and Avastin was better than Irrinotecan and Erbitux alone. We believe she was on the three drug combination just because of the continued occasional nose bleeds and the fact that she would not have needed to take the Ace inhibitor she was on when she took Avastin earlier also seemed to indicate that she was still on Avastin. The three drug combination worked to keep things stable for a while - 6 to 9 months maybe. Note the 5-FU was eliminated from the cocktail... She actually thought this three drug mix was easily tolerable compared to FolFox plus Avastin, and Folfiri plus Avastin. These too has some side effects, although she still tolerated them very well compared to most people. The three drug cocktail shen thought was a piece of cake relatively speaking. Anyway - I think the Irrinotecan, and 5-FU is what failed then the Erbitux in the trial. EGFr Inhibitors like Erbitux do fail as there are three other factors like it that the tumor will use to get around its inhibitory action. But - that said - some data suggests that Erbitux or another similar EGFr inhibitor could start to work again, because the tumor will revert back to using the normal EGFr pathway after a while since its no longer stressed. So these agents could be used again. I haven't seen if you had tried Erbitux, Tarceva, or one of the newer EGFr inhibitors yet. I note you are KRAS wild. So this option remains open to you I think. I don't recall if you had Oxaliplatin or not. Seems they went straight to Irinotecan.

I think in my prior message that turned up missing - is that Oncologist read blood work and prescribe chemotherapy. Radiologists do the imaging and read the scans. A lot of training goes into both, but the Radiologist shouldn't prescribe chemotherapy, and the Oncologist shouldn't interpret scans/images. Its best that the same radiologist compares all your scans if possible, as their methodology would be the same over and over again. But a second opinion here on the scans also would not be out of line either. Reading scans is very hard to do. They are often looking for changes that are as smaller sometimes than a grain of rice. Image quality also has a lot to do with it. Your images from scan to scan are not lined up exactly the same way each time. No mater how careful they are they just cant get an image that they can overlay on top of one another. Some scans the slice may straddle that grain of rice and it not be seen, until by happenstance the rice got bigger. things like that. Oncologists are not trained in detail how to critically look at these images. Its a lot of work. I had a resident working on becoming a certified radiologist renting from me. He put in a LOT of work with his mentor learning what to look for. Good oncologists can look at these images and follow the information in a scan report from the radiologist, but its my feeling the interpretation of the scans should be left to the radiologist.

On the flip side. A radiologist shouldn't look at the data in a blood test report and make chemotherapy decisions either. Almost all Oncologists are hematologists that end up further specializing in oncology. Then we have Radiation Oncologists that are a whole nother story. So you can see where there will be differences of opinion between them all. The best cancer centers all these people work together as a team. Multiple oncologists, radiologists, radiation oncologists and surgeons all work together. My wife's oncologist's practice is made up of many folks in a team. So no one oncologist works in a vacuum. They have a tumor board that is used to examine patients cases and make the best overall recommendation. Until recently we were very happy with this team. But they have limits as to what they can do as well, they have to have the staff to manage small trials available locally, or they have to use standard practices. They can't just use anything they want as the insurance industry will not pay of course. They also can't run any trial at any location. It takes a lot of resources so it's the luck of the draw if a trial that might make sense for you might be near you or not. If you live in Houston or New York City you have a hell of a lot more options than most folks. The only options my wifes Oncologist had were a couple drugs. Lonsurf, and Stivarga, neither of which seemed to be good options right now even her oncologist thought so. He offered them up but even he isn't very enthused about them. Fortunately his classmate is the coordinator at the local research university hospital for Phase I trials, and we were able to get in to see them. Based on what my wife's oncologist passed on to this doctor at the university - they were able to potentially match her to a trial there. Its a newer drug similar to Avastin, but also inhibits apparently cancer stem cell formation which would lead to further spread. If this doesn't work we may cast a net further...

So - Its likely time for you to ask many questions of your doctors. See why they can't come to a consensus. Ask about other options. May be get a third opinion at a major NCI cancer center.

Good luck and continue to be a PITA! (I like them with hummus! ).

GrouseMan