The weather cooperated and the party on the lawn with a live brass quintet was a lot of fun, as usual. The quintet got a kick out of J's costume and played the theme song from the series of TV commercials where she got her idea.
Posted by Kathy on Monday, October 30, 2006
Two of M's classmates came over today to work out some witch costumes out of our pile of old clothes and accessories. We invited them to come with us tomorrow to the annual Halloween party held in a nearby botanical garden. They want to go as a trio of witches but N, of course, wanted to be included so we had to get four witch outfits ready to make a quartet. L will wear the bat costume that J wore a few years ago and J will be a Kewpie doll dressed as a large red pod of codfish eggs. She and her friends like a series of commercials for a codfish egg spaghetti sauce that uses this character. http://www.youtube.com/watch?v=yoUq16ql9sE shows the original Kewpie, J will probably just use her own face unless she wants to make a mask tonight or tomorrow morning.
With the leftovers in the dress-up box and a little black eyeliner, I'll probably be a pirate (probably more like Smee than Sparrow). I'm looking forward to seeing many of my foreign wife friends and their families. This party seems to get bigger and better every year.
Posted by Kathy on Saturday, October 28, 2006
I should get to bed now but I just wanted to post that my visit to the center went well yesterday and the ball is now rolling to get all the necessary information for a consultation on November 7th with the head of the respiratory and breast cancer divisions about the status of my cancer and the treatment options. Tomorrow I catch an early train to be in time for an 8:30 appointment to get a shot of isotopes to illuminate my skeleton for a scan at 10 or 10:30. That means S gets to make sure the kids make it off to school on time and I get to wander around the fish market and vicinity while I wait for my bones to absorb the radioactive stuff. It isn't dangerous to people around me and I don't expect people will notice any glowing, even if I feel like I glow. :-)
Posted by Kathy on Thursday, October 26, 2006
I picked up the documents I needed from my oncologist at Kyorin to apply for an appointment at the National Cancer Center across from the fish market in Tsukiji. I faxed the cover letter, my doctor's request, my request (with contact information) and a brief history of my case written by my doctor on Tuesday afternoon.
I got a fax today informing me that I should be at the NCC by 10 a.m. on October 25th and that the doctor I had requested (breast and lung specialist who takes care of my downstairs neighbor) would be seeing me. My neighbor wants to go with me, so I took the fax downstairs to show her. She was pleased that I got an appointment so soon.
She looked a little confused when she saw the examining room number on the fax. "That's not Dr. F.'s room." So she called the center and got Dr. F., a very important and busy man, on the phone and asked him if he had me in his schedule. It turns out that he'll be away that morning but colleague, Dr. Y, will check me out. He asked her to give me the phone and apologized directly to me about the misinformation in my fax and told me to be sure to tell his colleague that Dr. F would be on my case thereafter.
My neighbor was happy about it and is hoping that I'll have a second appointment that coincides with her November 7th check-up so we can go together and then have lunch in Tsukiji with three other stage IV survivors from her treatment days (many years ago) when we're finished at the hospital.
I checked the NCC website and downloaded the first time visitor forms so I can fill them out and take them with me to save a little time at the reception desk. I also checked their policy on second opinion consultations. They charge about 100 dollars for the service which isn't covered by the public health insurance. I see that my doctor at Kyorin deliberately left out the words "Second Opinion" on his paperwork so it looks like he's referring me to the NCC for treatment and my consultation will cost about 5 dollars. I do have a November appointment at Kyorin, but if I decide I can get better treatment at the NCC, then I can call and cancel my Kyorin appointment.
In reading over the history, I was surprised to see that my cancer is HER2+++ which means that it makes too much of a protein called HER2 and that infusions of Herceptin (trastuzumab) might be effective in shrinking the cancer and keeping it away. I asked last year about whether or not I might benefit from Herceptin. The reply was that it wasn't applicable in my case. I took this to mean that I was HER2 negative so I didn't research further.
It turns out that Herceptin has only been approved for stage IV use and I was only stage III when I asked. I should have asked "Am I HER2 positive?" so I could have tried to get into a clinical trial back then. I'll be sure to ask questions in as many ways possible from now on.
I wrote to (e-mail) Chugai Pharmaceuticals (the Japanese supplier of Herceptin) yesterday with details of my case and asked if they had any applicable trials. I got a sincere but regretful reply this morning. They have a trial going on for possible use in stomach cancer and two trials for the effectiveness of treating early stage breast cancer with a year, in one study, or two years, in another study, immediately after breast surgery. The man did write encouragingly that Herceptin has become available for treatment of stage IV HER+++ patients and that I should speak with my doctor and go for a second or third opinion until I find the right therapy for my case, whether it be Herceptin or not.
The reason I'm looking for trials is that I really think Herceptin may be just what I need, but from what I've read on the internet, it costs about 60,000 dollars a year after the national insurance deduction and some women take it for one or two years while other woman expect to take it for the rest of their lives. Also, with my luck, I'd get a placebo in the trial, so I'd really love to find a trial like " Comparison of Effectiveness of Herceptin with or without Aromatase Inhibitors" where I'd be sure to get the good stuff. I will ask the NCC doctor about the possibilities and also try to meet a social case worker to find out how to qualify for a little (or a lot) of assistance.
Of course if the prognosis will improve only slightly with the drug, it may not be worth it. Women in a survivors group with similar cases even older than mine say that they're continuing with hormonal therapy and regular CT scans to monitor the progress or, hopefully, lack there of, of the cancer like what my Kyorin doctor is considering. I have to start writing down a list of questions for my NCC appointment. Let me know if you have any that you think I should ask.
I'm thinking along the lines of:
1. Do I need a lung biopsy?
2. Would more chemotherapy eradicate the lung metastasis like it did for the lymph metastasis?
3. What is my prognosis if I have more chemo? If I have Herceptin? If I have chemo and Herceptin? If I wait and watch with torimifene only?
4. Wouldn't it be better to surgically remove my ovaries instead of stopping them with regular Zoladex injections?
5. It's possible that I have Factor V Leiden (another protein thing!), a genetic tendancy toward blood clotting problems. Can you test me for this and how might this effect cancer treatments? (Kyorin never followed up on this request.)
6. Is stage IV breast cancer in a lung treatable with proton beam therapy (only offered in about 3 places in Japan, all connected with the NCC and it seems that it offered to a select group of lung cancer patients)? If so, how much does it cost and how soon can I get it?
7. How often should I get CT scans (with iodine contrast), bone scans, MRI, other tests.
8. Are there any clinical trials that would help me get the medications without putting my yet to be born grandchildren into debt?
The goal is to live long enough to worry about knee replacements and Alzheimer's so I can forget all about cancer and dance (thus the new knees) on the sidewalk like my great aunt Millie. She knew what a good time was!
And now I'll give up looking for the spell checker on this page (I don't know where it goes sometimes or if there ever was one) and correct any major bloopers later.
Posted by Kathy on Thursday, October 19, 2006
Do you think I'll get a Nobel prize for proving that sound is actually faster than light?
Posted by Kathy on Tuesday, October 17, 2006
I took my neighbor with me today to see the results of last week's CT scan. The spot in my right lung is still there and maybe, but very slightly maybe, a little larger than it was in my end of July scan but smaller, definitely smaller, than it was in my spring scan.
My advocate neighbor asked why they didn't want to take a sampling of cells and the doctor said that because it was too small to see on an x-ray, it would be difficult to get cells from the spot and very uncomfortable and expensive to get information that we already know (that it's breast cancer).
Then she asked him why he didn't send me along to one of the two or three places in Japan where they could treat me with protons to zap the stuff in my lung for good. He replied that my case would not pass the eligibility requirements as breast cancer in a lung is not so life threatening as lung cancer in a lung.
Then she asked if I should go back on chemo right away to deal with it. He reiterated the need to balance cancer management through vigilance and hormone treatment with blasting cancer with possibly debilitating treatments and that I should expect to be watching and treating for the rest of my life and that my current condition was not especially drastic or immediately life threatening.
We asked for records for me to take with me for a second opinion and he was very encouraging about any actions I might take to be reassured or to help me make decisions on how to manage my cancer. I'll go back next week to pick up the records and he'll send my request form from his hospital administration to the hospital of my choice (the National Cancer Center) to get the ball rolling. My neighbor will also call the National Cancer Center and try to get me seen by her specialist, the head of respiratory and breast oncology (I think it's actually two departments that he heads) when he returns from a symposium in the States.
In the meantime, I continue with the daily toremifene tablets and feel fine enough. I guess living with cancer is better than not living with cancer but still feel that living without cancer would be best...
Posted by Kathy on Tuesday, October 10, 2006
We decided to take a picnic and go out to enjoy the windy but otherwise beautiful weather today. We ended up at the small zoo in Kichijoji where we saw Hanako, the first elephant to be sent to Japan after WWII (a gift from Thailand). She is 59 years old this year and has only one of her four teeth so her keepers feed her large amounts of very finely chopped sweet potatoes, bananas, carrots, apples and other things and chop her grass into 2 or 3 inch lengths. She played with a long hose, tossing it over her back and wrapping herself in it and then pulling it off and starting all over again. One of her teeth which came out a few years ago was on display. It looks like it must weigh 5 or 6 pounds.
L and N enjoyed the squirrels. They were given a bingo sheet with pictures of squirrels in various states of activity. They had to observe carefully to check off as many of the squares as possible. L found the most (or said he did) and was awarded walnut shell that had been expertly broken into two halves and emptied by a hungry squirrel. The zoo employee showed us how the pieces fit together and where the squirrel had scraped a hole along the seem to break it apart. L may have been expecting a more luxurious prize for his efforts but he did remember to say thank you. He looked much happier when all the observers were given badges for completing the tour. The walnut is in a box with some cotton to take to show-and-tell on Tuesday (tomorrow is a holiday).
Posted by Kathy on Sunday, October 08, 2006