Got my CA125: went UP from 71.5 to 78.3, even though I'm getting taxol weekly. :(

lindaprocopio said:

No appt. yet at Fox Chase, but VERY informative appt locally.
I picked up the CD that my local hospital made of all my 2010 CT/PETs and that needle biopsy to take with me to Fox Chase, but they haven't called me yet with an appointment. I will call them Monday if I don't hear from them today. Meanwhile I had an appointment for my 3-month regular internal with my gyne-onc this morning, and I'm still shaken by our frank conversation. The GOOD NEWS is that all look good from my internal/rectal physical exam. But the rest of the conversation was information (almost TMI!) and disturbing.

We talked about my assumption that if we leave the underarm lymph node in, it may grow larger and start causing me pain, but that by then my platelet and nuetrofils will be too compromised by the chemo for them to safely do surgery. My gyne-onc said that is a possibility of course and that if that node grows uncontrolled it could press on a nerve and possible cause me to lose some use of that arm. (!!!!???!!!) We talked about the extended overall survival of having salvage surgery that would remove all measurable evidence of the cancer, which I had read in a recent study increases the statistical overall survival from 13 months to 30 months. For me that would also involve removing that para-aortic lymph node that keeps lighting up on every other PET scan. He said that my involved para-aortic node is right by an artery (which I assume is what para-aortic means, right???) and very close to my spine and 1 kidney and that this would be extensive dangerous surgery. I knew that, but he went on to say, "but if we can't get that node under control and it keeps growing it could press on your spine and cause some paralysis (!!!???!!!) ; or if it gets into that aorta I don't even want to paint you that scenario." (!!!???!!!) He said that the Geisinger tumor board was advising against the dual surgery for me because I probably would still have microscopic cancer cells elsewhere and still have cancer, and would probably need 5 to 6 weeks to heal from surgery before I was able to get back into chemo. He said that he had recommended radiation of both areas for me, but that my radiation-onc was against that. And he said if Fox Chase recommended surgery for me, and I wanted to go for it, he would advocate for me at Geisinger for them to do the surgery, because my case is so unusual and I am so strong.

I asked about the taxol and why it stopped working for me after 23 rounds total. He said when they prescribe a chemo that attacks through the front door, after time the cancer learns to shut that front door; and then they have to attack through a back door or a window (by trying a new chemo). He said sometimes the cancer learns to shut ALL the doors and windows at once, and no chemo will work, but that we currently have no reason to believe that is true for me. And he said that after several other chemos we may even be able to go BACK to taxol as the cancer will no longer be able to keep the front door shut (t push that analogy).

Seems like a 'damned if you do; damned if you don't scenario. I'm anxious to see what Fox Chase has to say and have no idea whether I want surgery now or what to do. But I am glad to be getting a clear picture of my options. Still, Id never thought about some of the grim things that could happen if chemo or radiation or surgery can't get those lymph nodes under control, and it is scary for sure.

Wow Linda what information you received
You certainly got a lot to think about didn't you. I agree it was probably information overload. I think the lymph node would have to grow significantly to cause paralysis. I know that the lymph system travels through the body much like the circulatory system does. So the possibility of microscopic cancer cells being in other places can happen. That is what is scary about lymph nodes being involved. That is why chemo works as it travels through the body.

I hope you get your appointment with Fox Chase to get their opinion. That way you can decide how you want to proceed with treatment. I really wish you could get a break from treatment, as you have never really gotten a break.

You continue to have such a positive attitude and are an inspiration to all of us. Keep up all your hard work, and continue to enjoy your family and life. In peace and caring.