When to change tracks? The Talk - Page 2

StephN · 11-07-2008, 04:10 PM

Dear Kathy -
Well, darn those inscrutible Japanese!
They must not have much experience with us determined types. Maybe Japenese women are taught to accept things and not kick back, but this is your life!

When I was given bad news of my raging liver tumors my onc did not send me off to get info on end of life issues. He sent me upstairs to get DRUGS.

Hope the heart scan today showed some improvement. And do some creative thinking and then make your onc do the same. I am sure you can get something "off label" that will work for you.

ElaineM · 11-08-2008, 04:23 PM

StephN
Love your strong spirit, StephN. You are going to live forever-------well almost !!

Cannon · 11-08-2008, 05:42 PM

Hi Kathy,

I have also seen your posts for years now(!), and am inspired by your positivity.

As I recall, the situation with your husband is beyond not-helpful. Please forgive me if I have misunderstood or over-reacted, but perhaps you could/should think about returning to the states with the children, without the husband, and turning to your parents for help for yourself and your children. Is your husband capable of raising your children without you?

If it's quality of life you're looking for, think big -- what's the best way to accomplish that?

Hugs and prayers,
Rebecca

Kathy S in Tokyo · 11-09-2008, 01:19 AM

I'm so glad that I have this site to look to for advice, encouragement and hope. I've made a list of questions about various therapies to hand to my doctor on Tuesday whan I go for my Herceptin (if he likes the heart scan I had on Friday) and am searching through Japanese language websites to see how other cancer patients have dealt with various treatments and what's available on and off of the approved drug list. I'll be sure to post what I find.

Keep on truckin'

Kathy S in Tokyo · 11-09-2008, 05:45 AM

From what I've been able to read on the Japanese sites regarding use of yet-to-be-approved drugs, importing my own Tykerb and asking my doctor to montitor me is not impossible if I win the lottery big time.

As the government does not allow patients to mix insured and uninsured treatments, under Japanese law, patients who receive uninsured treatments such as Tykerb have their insurance coverage cut off for all other related procedures. Related costs, for check ups and testing, for example, would then not be covered. NOT AN OPTION.

I'll ask about it on Tuesday anyway. Gemzar has been approved for certain specific uses but not for breast cancer yet, so he could prescribe off-indication use and charge me the full cost but I'd run into the off-insurance use dilemma here too.

Axbrane approval was applied for in Mar. 2008 and Tykerb in April 2007 and are still pending. I like the idea of the Axbrane and mistletoe trials, especially if the cute doctors have to kiss me everytime they find me under my IV bag...Still looking for Japanese info on Ixempra and epithilones in general. It looks like Bristol Meyers Squibb has some phase II trials going on over here for BMS-247550.

Radio Frequency Ablation is high on my list of Tuesday questions.

It looks like I'll start Taxotere again on the 18th or 25th at any rate. Might visit Paula Young and check out some silvery grey short wig styles as my original wigs were chosen before I got grey hair.

11-09-2008, 11:10 AM

Hi Kathy,

I was so sorry to read your post. A lot of people posted good suggestions, and I am glad you plan to follow up with them with your oncologist. Are you familiar with the clinical trials website, www.clinicaltrials.gov? If you go the the site and use the "advanced search" feature, you can look for trials for treatment of metastatic breast cancer in Japan. You simply select Japan as the country and put in metastatic breast cancer as the search term. There is a trial of Tykerb (lapatanib) and Xeloda (capecitabine) that seems to be recruiting at several locations in Japan. It does not mention race as a criterion. Perhaps you can try a few different sites (there seem to be several in Tokyo alone) and see whether any of them will let you in. You could also contact Glaxo Smith Kline to investigate this issue. I am not sure whether looking for trials in Hong Kong, Taiwan, or Korea might be an option for you. (If the treatment is just oral or infrequent infusions, this might not be as crazy as it sounds.) Of course, getting a second opinion would be helpful. I wish there were a way for you and your family to come to the US for a time to get treatment here. It certainly seems like you have not exhausted your options yet.

Good luck! Gambatte kudasai!

Jill

ElaineM · 11-09-2008, 01:09 PM

Kathy,
I am so happy you are looking at various options besides hospice. Hey. I never thought about asking for a kiss to go with mistletoe. Now that is TLC to the max !! Sounds like fun to me !! Do they get the connection between mistletoe and kissing in Japan?
Let's put mistletoe on our list of favorite holdiday things in the thread I just started about favorite holidays in keeping our minds off BC. Smile. I think it was Gemzar and mistletoe that was or is used together in a clinical trial. Oh well, maybe we can start a new treatment of Abraxane and mistletoe. It might make Abraxane more fun !! Smile again.
Here are some more links for Kathy and anyone else thinking about changing tracks.
For financial options: http://langetc.tripod.com/health6.html
(I don't know if any of these are still current, but we also have a list of financial resources at the entrance of www.her2support.org. I think it is listed under resources.)
For a list of the best hospitals for cancer:
http://www.usnews.com/directories/ho...ialty+IHQCANC/

ElaineM · 11-09-2008, 01:31 PM

P. S.
Forgot something !! It surprises me that a person must use ony certain medicines in Japan. What about complementary, integrative, Chinese or naturopathic medicine? I keep reading that medicinal mushrooms Shitake, Maitake, Reishii etc.) are used in Japan. How are they integrated into conventional medicine?
I live in the U. S., but when I found out I had cancer I decided I wanted to include complementary medicine right away. I found a good licensed naturopathic physician who has helped me for almost 10 years. I didn't tell or ask my M. D. s about it at first. I just did it with the help of my naturopath whom I trust and who knows alot about cancer and cancer treatments. I slowly introduced the subject to my M. D.s little by little when I thought they were ready to learn about naturopathic medicine. Now my M.D.s suggest I ask my naturopath about various things. For example when my white blood counts were below normal my M. D. suggested I ask my naturopath instead of using shots. My naturopath was able to help get my blood counts back to the normal range quite well. My M. D. and my naturopath have also collaborated on a several tests.
Many U. S. hospitals now include complemetary and integrative medicine as an option.
I also learned that some cancer medicines like the taxanes had natural sources. The original source for Taxol, Taxotere, Navelbine and Abraxane was the Pacific Yew Tree !! Guess what the original source for Herceptin was? Anybody know the answer?

StephN · 11-09-2008, 02:43 PM

Elaine brought up a good point about the mushrooms. I used to be able to find a good Reishi tea, but that company no longer makes it.

While fighting my mets and until NOW, I DO eat a shiitaki mushrooms very often. Last night had probably the last of the local chantrelles that are available. So it will be back to the Siitakis.

I also went to organic as much as possible to lessen the toxic load on my body. Drank a good quality "detox" type tea almost every day, to help cleanse my liver and bood of the chemo/cancer "waste."

Glad you have gotten busy and found out more about the Japanese system and all the best for a positive appointment with your docs.

Kathy S in Tokyo · 11-09-2008, 10:03 PM

Complementary, alternative, CHinese and naturopathic medicine are available here but not covered under the national health insurance plan other than a few Chinese herbal remedys that regular MDs often prescribe for allergies, menopause relief or a few other things. The same herbal remedies from an herbalist would not be covered. I can take reishi and shiitake supplements at 100% my cost and tell the doctor without risking loss of my medical care as they're considered a bit like vitamins and not treatment. So, I may ask how things might work out if I take a vitamin called Tykerb sent from home...

Jackie07 · 11-09-2008, 11:02 PM

Kathy,

Having lived in Japan for 26 years, you know how to maneuver around their system. Japanese are generally strict, sticking to the rules - the no exception type. I remember vividly during a concert almost 30 years ago in the National Taiwan University Auditorium. I was with the University Choir hosting a visiting Japanese college (all male) choir. Their acappella were beautiful. I am sure you are familiar with 'Sakula', their national flower and the title of one of the songs.

During intermission, I noticed the amazing way young Japanese audience behaved. Whenever there were more than two people talking, the original two would step back and let the third, fourth...etc in and always maintained a perfect circle. And they never raised their voices. Of course these were mostly children of diplomats, missionaries, or business men from Japan. But I was just very, very impressed.

Glad to hear about the actions you are taking. Remember the power of prayers and the amazing power of positive thinking. I am sending love from Central Texas.

ElaineM · 11-10-2008, 09:36 PM

Kathy,
If you want to try Shitake and other mushrooms how about eating them in food rather than take expensive supplements? That way it is not considered a medicine.
I buy big bags of dried Shitake when they are on sale and buy the fresh ones when I can afford them. I soak the dried mushrooms in warm water before cooking with them. I also buy other things in food form that are considered medicinal like tumeric, ginger, garlic etc.
Maybe you can get some books on the subject at your local library or find some reliable internet resources on cancer and food.
Good luck on getting your doc to accept Tykerb as a vitamin. I hope you make it. Keep up the good work on the research etc.

Kathy S in Tokyo · 11-11-2008, 02:57 AM

One good thing about living in Japan is the shiitake. We have them about 5 days a week in one dish or another, sometimes in a steaming pot of lightly miso based soup with enoki, shimeji, nameko and whatever other mushrooms I can find.

The vitamin Tykerb ploy was unsuccessful but my doctor appreciated my originality. The results of last Fridays heart ultrasound were fine so I'm back on Herceptin (Yay!) and plan to start (possibly biweekly) Taxotere again next week. He asked how I got along with the counselor and told me I could take my time but that I should get my preferences registered with the counsel and keep making end-of-life plans, gradually. I figure I'll go ahead and make plans now and keep updating them seeing as I may have different circumstances and preferences when I'm 90.

The lady I know here who has done alternative treatments and gone macrobiotic and survived for more than a decade after the "end-of-life" talk still sees the same doctor I do for quarterly check ups but, she confirmed, she pays 100 percent of costs for bloodwork tests because she's using complimentary medicines and then, if the markers are suspicious, the insurance kicks in for CT scans and other diagnostic testing. Sigh.

Things seem fine this week, at any rate.

Time for some more hot soup and then back to the laundry.

Mary Anne in TX · 11-11-2008, 04:11 AM

I hear the warrior within this morning, Kathy!
Fight on girl!
There are many-a-mushroom to eat!
Much love and good health!
ma

Sheila · 11-11-2008, 05:33 AM

Kathy
I have read the posts and so many good ideas were mentioned...its because we love you Kathy...and we are bound to keep you here on this board with us!!!! You have too much of a positive attitude to let that onc. tell you to "make plans." Tell him to take a hike!!!! Just wondering if you have tried Avastin yet as it has been very promising ...just keep close tabs on the Blood Pressure. Taxotere will probably be hard on the hair, but hey, bald is the new sexy!!!
Sending love and hugs and STRENGTH to you ...you have come too far to throw in the towel!

Faith in Him · 11-11-2008, 09:23 AM

Hi Kathy,

I must say, I admire your determination and sense of humor. I am glad you are back on top of your game. I only hope that I have as much grace and fortitude as you if I get the "get your affairs in order" talk.

Sending hugs of encouragement,
Tonya

Mary Anne in TX · 11-11-2008, 10:09 AM

Hey Kathy!
I've been thinking about your visit to the Paula Young site and a new wig! Be bold girl! Go for broke and get a snazzy one for sure! And promise to upload a picture for us, ok!!! ma

ElaineM · 11-11-2008, 12:00 PM

That miso soup with all the mushrooms sounds delicious.
Can I have the recipe? There is also supposed to be something beneficial in miso for breast cancer, but I can't remember what. It must be something to do with the fermentation process. I eat miso soup when I have a cold. I make the soup and throw in various veggies that seem to go with it like onions, bean sprouts, mushrooms, ginger, garlic and bok choy.
I love your spirit. Good luck with the wig shopping. Be sure to pick something cute and sexy.
There is nothing wrong with planning for end of life as long as we continue to fight, be assertive and proactive. Showing our docs that we intend to fight also helps. I don't complain too much about side effects and when something doesn't seem to be going my way I push them to help me find something else or I find it myself and suggest it to them. I try to learn as much as I can.
I have also "fired" docs who didn't seem to be helping.
I don't eat too much refined sugar or desserts. Hint. Cancer uses glucose and sugar to metabolize. The Pet Scan is based upon that theory. The macrobiotic diet sounds good. I think I probably eat a version of it, but add fruit and some fresh veggies.
Docs and insurance companies can't complain about us eating healthy or withdraw coverage for food. We can subsitute supplements with food versions of the same thing most of the time.
Good luck with the Herceptin and Taxotere. Keep putting one foot in front of the other girl !!

StephN · 11-11-2008, 01:59 PM

Hey Kathy -
That's the spirit!

Noticed that you are hormone positive. Was wondering about the soy based foods you have in Japan. There has been a lot of discussion about how the phytoestrogens may boost or "feed" hormone positive cancer cells. Being hormone negative, I STILL watch my intake of plant estrogens, as I think the information is still coming in.

Don't know if this topic has ever entered into your chats with onc, but you may even ask the nurses what they may know about this.

Kathy S in Tokyo · 11-11-2008, 04:37 PM

StephN, the cellwork indicated ER and PR positive but none of the hormonal treatments did a thing. I avoided soy while trying Tamoxifen by skipping that part of the meal. I worried about the soy issue as I've spoken with doctors here who feel that soy is great and others who warn against it.

Now I'm in my moderation stage (although I've never been in much of an overconsumption stage). I don't use highly processed foods where the soy could be hidden or somehow enhanced or concentrated but I do enjoy a little tofu, miso, gooey fermented soy beans and, when in season, fresh boiled green soy beans(edamame). I feel a little better about these as they are closer to the original plant.

I know my soy intake is probably not nearly as much as the average here. A friend who is allergic to soy beans here seems to be okay with the fermented soy products. I probably have "something soy" about 3 or 4 times a week, and only a few bites as a instead of 3 or 4 times a day. I only use about a tablespoon of miso in 2 quarts of water for miso soup as I use kombu (kelp?) and dried bonito or teeny tiny dried sardines for a soup stock. My kids are fine with this but I think my husband longs for a little more miso oomph in his soup (which he can easily add to his own bowl of soup.)