Saturday morning follow up

Yesterday is done . . . and it went fairly well. Breakfast was delicious at Cora's. If you've never been, you've got to go. Lots of selection, great food and lots of fruit. It's pricey, but wow, do you get a lot of food. Angie, Michael and I went, and enjoyed it immensely.

The blood draw was painless and went off without a hitch. My blood levels were really good and I think Dr. P. was surprised. He asked about tingling in my hands and feet, which are a common side effect from chemotherapy and was pleased when I said I haven't experienced that. It doesn't mean it won't show up during these last two rounds, but it's looking good.

I asked about what activities I can do after. Michael and I are considering a small, celebratory vacation to reconnect and try to deal with the mental after effects of this disease and Dr. P. placed no restrictions on me. He said I could go in a plane, visit a tropical island, take any other preventative medication (Dukerol or anti-malaria medication), etc.

He also suprised me by saying I could go in a private pool or hot tub now (because the bacteria levels are controlled better) because I thought those were verboten.

He basically said, I can do anything a "normal" person could do. He treated me like I don't have cancer any more. I got the impression that once we're through these last two (now one) chemotherapy treatments, I'm a normal person and can do anything. That is a very good feeling.

But, he did bring up the clinical trial taking place at the London Regional Cancer Program for after treatment. It's for a drug called Sorafenib, which essentially cuts off the blood supply to any new tumours so they die. I met with the research coordinator who discussed this double-blind study (half the participants get the drug and half get a placebo) as well as the appointments and care I'd get if I participated in the study (ECGs, CT scans, physical exams and blood tests of check CA-125 levels).

In a way, I like the idea of being followed closely after my active treatment is done. Part of me says, "yes, please watch and make sure the cancer doesn't come back so we can treat it right away."

Dr. Prefontaine discussed the regular follow up care that takes place if I don't participate in a study. Usually, it's an appointment four to six weeks after my chemotherapy to ensure the treatment worked. The only test they would run is bloodwork to check my CA-125 level. The next appointment would be three months later and then six months after that. That's it. They don't do a CT scan or even continually check for CA-125 levels because it's not necessarily a true indicator the cancer is back.

He quoted a study recently completed in England where patients started receiving treatment with elevated CA-125 levels (two of more, I think) compared to those who were treated when cancer symptoms returned. The study showed no difference in survival rates between the two groups. Hunh.

But back to the Sorafeib study, I got an information package explaining the entire study and potential side effects, which are scary. There are lots, but some of the worst include:

- Bleeding, including bleeding from the bowel, lungs and airways and rarely into the brain (could be life-threatening or fatal) - in 10 per cent or more of the participants

- Renal failure - one to 10 per cent of participants

- Aching and painful muscles and joints; tingling or painful extremities - one to 10 per cent

- Inflammation of the stomach, pancreas or perforations of the bowel - less than one per cent

- Severe high blood pressure that may require hospitalization and may lead to confusion, changes in vision and seizures (may be fatal) - less than one per cent

- Chest pain, heart attack and congestive heart failure (may be life-threatening or fatal) - less than one per cent

- Increase risk of skin cancer - less than one per cent

Of course, they have to list all the potential side effects, I'd be watched carefully and I could discontinue the study at any time. But those are some pretty concerning side effects. So I have lots of questions.

I'm also looking into another study available to those with the BCRA gene dealing with PARP inhibitors. As I understand it, they basically replace the broken DNA gene to kill off the cancer cells as they're growing (because it recognizes they're not normal). I like the idea of that type of study because it catches the abnormal cells before they form into tumours instead of treating them afterwards.

There's an active PARP inhibitor study headquartered out of British Columbia right now, with a centre in Hamilton. But I have to get more information about the Sorafenib study (talk to the actual researcher) and question him about the PARP inhibitor trial. I'm sure the cancer research world is a pretty small one and he's know some details about it.

But first I have to find out if I have the BCRA-1 gene. Despite having blood drawn for the tests on May 13 and being told it will take four to six weeks for results, we don't have them yet. We've been told they've been delayed due to summer holidays, staff shortages, etc. but come on! I need to know. Mom and Angie need to know. Mom has appointments with specialists lined up with the impression she carries the gene. If Angie carries it she needs these same appointments, which can take months to secure.

I'm going to start bugging the Dr. A's office next week because I need to know if I quality for the PARP clinical trial and I've got to move quickly because my LAST treatment is on Sept. 4.

Oh, this treatment went okay. It took two needles sticks (and the first one was really painful because the vein collapsed) but the rest of the infusion was event free. Angie and I munched, watched a movie and talked. One more to go.

I'm feeling pretty good this morning. I had coffee and some yummy coffee cake. I've taken all my medications and vitamins. I can feel the skunky tastebuds trying to take over my mouth (earlier than usual again) and my stomach feels a bit queasy.

So far, so good. And one day at a time.

Have a great weekend and thank you all for your prayers and good wishes yesterday. (Rachael I loved the vision of you stomping cancer cells with your heels.) Everyone is awesome and I'm thankful for you all.

Tina