More Kool-Aid

I get a three week break from Herceptin starting today. We decided that the Herceptin and Taxotere regime has lost its effectiveness and that a stop-gap chemo until Tykerb becomes legally available here is the next step. A few years ago I had a Kool Aid red colored chemo called Epirubicin. From April 21st, I'll start a similar drug, Adriamycin. This one is orange, and is as toxic to the heart as Epirubicin so there's a "lifetime limit" to worry about. Herceptin also affects heart function adversely, so I'm taking a break to clear the system for a few weeks before blasting away with this old fashioned nauseating, hair reducing chemo once every three weeks for a while. Lucky that I have lots of good anti-nausea medications to make treatment a little smoother.

I skipped the Hercptin today but ahead and got my Zometa, the bone strengthening IV, today so I won't have to go in next week and I can enjoy J's entrance ceremony.

I'd expected a longer day of treatment and left lunchboxes full of chirashi sushi for the kids so I decided to take advantage of the beautiful weather and walk a few stations before heading home on the train. I went from Tsukiji to Jimbocho via Ginza, Yuurakucho, Hibiya (near the imperial palace) and Kanda. In Kanda there are a few large sporting goods stores and one of them had boxes and boxes of various training wear out on the sidewalk on the final day of a blowout sale (or maybe they just fell off the back of some truck...) Brand name tee shirts, cotton tennis slacks and jerseys for 300 yen each, the sign said. "J needs sportswear for high school..." I thought as I rummaged through the boxes and battled my way into the bowels of the store where the cashier asked if I had a "service card." The walk was a spur of the moment idea and the discovery of the sale pure luck so of course I had no service card. Did this mean I couldn't partake in the bargains? I must have looked a little panicky because the nice guy told me that it wasn't a problem and he rang up my purchases for 243 yen each so J's gym wear cost me a total of 729 yen. He gave me a "service card" for 20% off on my next purchase. I still don't know where he plucked 243 yen from though. Oh well, I like nice guys, it was a nice treat to get a bargain on something I needed to buy anyway and walking is good for my heart.

Tomorrow we're off in search of sakura (cherry blossoms) with onigiri rice balls and tea.



I met with Dr. F. today before my I.V. and he had bad news. There aren't any trials that I qualify for after all. He said he could try contacting colleagues in the U.S. but he knows that it would be very expensive and not covered by any of my National Health Insurance. He can also look at other hospitals in Japan but from what I've seen, the National Cancer Center seems to be the hub for trials.

The Tykerb approval I'd been expecting in December is likely to happen in June. He says I can try different chemo drugs to tide me over until the Tykerb is released. I feel pretty good for someone biding time until the next drug comes out...

I will go ahead make an appointment with the home hospice clinic to get that ball rolling anyway. Then I guess I'll make a list of all the drugs that women in the online breast cancer support group have had success with and hand it over to Dr. F. when I see him next Tuesday for bone scan results and treatment. I can get some input on whether they're available for breast cancer treatment or when they will be. Now I'm free to enjoy the foreign wives association picnic on the first. J plans to go with me tomorrow to walk around Tsukiji and Ginza while we wait for my skeleton to absorb radioactive injection the bone scan. She can carry any bargains we find at the market home for me.


Thinking about the trial appointment

I'm sure that they have my medical history but I thought I should have a digest on hand when I talk with the doctors about whatever trial they're hoping I'll take part in.

Here it is:
Nov 2004 - partial masectomy (clear margins) - ER/PR++ HER+++
Dec 2004 - Started Tamoxifen
Nov 2005 - Mets to axial, clavicle and neck lymph nodes - Rads for 30 days, then CEF-T Chemo for 7 months
Jun 2006 - Lung mets showed up mid-chemo , shrank a little w/final few treatments - oral toremifene
Oct 2006 - changed hospitals
Dec 2006 - Tamoxifen and monthly Zoladex
Feb 2007- Dramatic growth of mets! Stopped Tamoxifen and Zoladex
Mar 2007 - Began weekly Herceptin
Jun 2007 - Added weekly Taxol to regime
Apr 2008 - Yet more lung mets - stopped Taxol
May 2008 - Started Xeloda - 3 weeks on 1 week off
Aug 2008 - Got a port!
Sep 2008 - Stopped Xeloda, started weekly Navelbine
Dec 2008 - Tumor progression, stopped Navelbine
Jan 2009 - Taxotere begins again, once in every three weekly Herceptin IVs
Mar 2009 - Added Zometa because of painful pelvic bone event, tumors progressing


Thank you MIJers!

Last year at this time I was overwhelmed with the worries of paying for ongoing life extending cancer treatments and then overwhelmed again by the support of MIJ sisters, women in an online group in Japan. Thanks to the pledges and donations I received, I was able to relax and focus on getting my weekly treatments and enjoying time with my children this year.

The National Health Insurance plan has a contingency to assist members when their 30% share of the medical costs is high so I have been able to keep my medical costs down to 44,400 yen a month plus train fare after the monthly refunds. I've been able to continue teaching at my husband's English school as well as a few extra teaching and editing jobs here and there so things don't seem so dire financially this year. Whew! Thank you for helping through that all MIJ.

Treatment-wise, I've worked my way through the various treatments that were available and and the tumors in my lungs are still growing, probably more slowly than with no treatments. I'll be getting a bone scan next week to check on some spots that look cancerous on my hip and pelvis. The treatment for these bone metastases will be radiation every day for two or three weeks when I decide that I need help with the pain. I'm not in pain now though, so I'm in no rush to roast my rump just yet. I will be talking with a team of oncologists on April 1st about possible phase one clinical trials. Phase one is just after the lab research, basically when they need to find out how much humans can tolerate before it either stops working or the side effects become worse than the disease. It's exciting that I may get to try new treatments sooner rather than later. I guess I just have to wait until April to find out exactly what trials though, no matter how impatient I am.

I am glad that I feel well enough to get out and around with the kids and enjoy this lovely spring.


Plan B, or is it C?

Not wanting to waste the weekend I wrestled away from the children's friends and other activities, when we all felt fine after all on Friday night, I decided to use the refund from the canceled ski trip on a day at Disneyland. L was very pleased as he had never been. We took an early train and had a great day in spite of the crowds.

We got back around 10:30 and were surprised to see that S had scraped old paint off the bathroom walls in order to repaint them this weekend. We were too tired to do much but change into pajamas, brush our teeth and go right to bed anyway. S came home after 11 and was surprised to see us. He thought we were off skiing because he hadn't heard when we told him that we'd canceled. He was going to surprise us with home improvements.

Exhausted from our adventures, we slept in until noon today and he had plenty of time to paint without all of us underfoot. Then I set up a "Do Not Cross" line with masking tape across the door so the kids, who listen as well as S does, wouldn't go and touch the new paint after I told everyone "Don't touch!" (Which they all understand as"Touch and see why she says that.") The visual reminder has been effective all day. I took the children to a large public bath a few stations away for the afternoon so now we're as clean as the newly painted bathroom is. Tomorrow is a new week.



I had some very sharp pain last week right where my right leg meets my butt. I'm the sort of fool who doesn't recognize pain and has her first child at home but last week I could barely walk. I decided to have the local orthopedic surgeon take a look at it and get an x-ray last Friday. I gave him my history of cancer and, after he saw the x-rays, he asked a few questions about how recently I'd had a bone scan etc. It looks like I ever so slightly chipped my pelvis when my bike slipped a few weeks ago and the area was a little stressed. Then when I crouched to flip hot rice in the rice cake making event at jr. high school last week, the area was stressed again and BAM! Pain! He didn't like how the x-ray looked and didn't want to say anything specific until my oncologist saw the films. Fortunately, the pain has eased and I can walk again.

The weather forecast was for some snow on Tuesday so the Cancer Center wasn't so busy; nobody wants to risk falling down on slippery streets. My neighbor from downstairs had an appointment so we went together. Three out of four children stayed home from school with a stomach bug so I planned to rush home. I showed my films to Dr. F. and he asked to be excused while he ran over to show them to the osteo guy who was even less busy than our breast and lung specialist. The consensus was that my bones are in no imminent danger of crumbling, but now would be a good time to add bone strengthening Zometa once a month to my IVs and think about two weeks of radiation to the pesky bone mets so they won't be such a pain in the butt, literally. He sent me upstairs to have some more x-rays taken and then on to treatment.

I'll make up my mind on the radiation this week after I decide if the pain is really my bones or if it's from pulling something while doing the rice cake crouch. No rush, as I'm already in treatment for cancer. I'll have a CT scan on the 13th and a bone scan on the 25th at any rate. I think I should go ahead and get the radiation before it gets hot and humid (from mid April to October) making possible side effects (itchy itchy and a little sore) even worse.

So, I had Zometa on Tuesday and the side effects, for the first dose at any rate, were listed as slight fever, flue like aches and nausea. Not unlike the stomach bug already raging at home. Whatever it was, these symptoms hit with a vengeance on Tuesday night and I had to cancel lessons on Wednesday evening as I had no energy. Poor S wasn't feeling too well either but he managed to teach his classes. L and N stayed home today but it looks like the worst of it is over. I had to cancel our ski trip though. Sad.