Pet/CT results and update

Well, I've had my last BIG hurrah, but still plan to have many more small ones. My oncologist says that in hindsight, he shouldn't have let me have such a long break. But we don't do hindsight... because if I did that for my original complaints and misdiagnosis, and any treatment decisions made along the way, there are always the "what-ifs?' that will drive one mad.

For the good news: Base of brain, face, neck, lungs and hilar regions appear normal. Breasts, axillary and supraclavicular regions normal - nothing noted other than my port-a-cath. Liver, spleen, pancreas and adrenal glands normal - with note of staples at the junction of the descending and sigmoid colon. Remainder of soft tissues in abdomen and pelvis and inguinal regions appear normal. Skeleton shows no bone metastasis, but does show benign appearing arthritic changes. So I have NO organ involvement, and NO bone mets.

As for the bad news: I've had spread with many lymph nodes over 1cm and very metabolically active. These are in the mediastinum, retroperitoneal areas. A new high activity node measuring 1.4X1.4cm with metabolic activity SUV of 6.7, left above the aortic arch. But the rest of the mediastinum area looks good. In the retroperitoneal area a new one in the aortocaval region mid-kidney area 1.3X1cm with SUV 6.7. A new left retroperitoneal just below kidneys 1.3X1cm with very high SUV of 10.6.

So since the scan on 01FEB there is development of new hypermetabolic lymphadenopathy in the mediastinum, and a significant increase in the same in the retroperitoneal nodes in the abdomen. This explains my rise in CEA.

My oncologist says it isn't great news, but isn't grave news either. He said I'm not getting rid of him any time soon - especially with no organ involvement. I said I was actually hoping that the progression was organ - something they could re-sect. But he told me with multiple lymph nodes involved, I am not a candidate for resection anyway. So it is very good news that I have no organ involvement!

So I'm back on the hard stuff - Irinotecan added back into the mix. FOLFIRI with Avastin every two weeks. If I get to a stable point again I can have short breaks - but never a long one again. Chemo for life plan continues, but a worse one, with fewer breaks, with maintenance chemo not seeming to be an option... I stay under control on FOLFIRI, but as soon as the Irinotecan was dropped, my CEA started rising. With the FOLFIRI I have to get the Neulasta again. The very first cycle on it, I couldn't get my second tx for 4 weeks instead of 2 (and still not good enough at 3 weeks) because it hit me and dropped my blood counts so low. So I have no choice in the matter.

I have a love/hate relationship with chemo. I hate it - but it is keeping me alive. So what can I do?

Fairview Ridges (the closer hospital) cannot get me in for my Neulasta on Sunday, so I have to go up to Fairview Southdale. This sucks, but again, what can I do? It is SO ridiculous that I go to the hospital for these in the first place. But major medical will not pay for me to have them at home. If I choose that route it means $75 co-pay per shot through prescription coverage. There is no out-of-pocket max for prescription. I met out-of-pocket max for major medical in January. Our healthcare/insurance system is extremely flawed. It would cost my major medical insurance company so much less to let me get the shots at home. There is always one annoyance after another when dealing with our medical system.

In all of this I have my wonderful health care team that I can rely on to help me out. My oncologist and I are both strong-willed, but have come to a very good working relationship. He is good at what he does. My oncologist's regular nurse Nicole is wonderful, and returns my calls quickly. My lifesaver is my colon cancer nurse navigator Kim. Since my PET/CT report wasn't completely clear about total node involvement she is getting that number for me. And she is looking into possibilities for the future for Neulasta at home - to see how many shots I might be able to get for one co-pay, instead of having to pay it for every shot.

I may have progression, but I'm still kicking and fighting, and don't plan on an end any time soon. And I'm grateful for the break I got, because truly I don't know how many cycles in a row I can do of chemo. I often feel the chemo will kill me before the cancer. So we will have to find a balance that I can live with.