When to change tracks? The Talk
 

I was expecting this talk sooner or later and today was the day. I nursed a cold all weekend and although I feel better now, I still have laryngitis. I went in for my usual pretreatment blood draw plus an x-ray to see how the Navelbine is working and the Navelbine is now applying for unemployment. The spots in my lungs have grown in spite of the continued Herceptin and Navelbine and my heart seemed a little enlarged in today's x-ray so I had no treatment today (which was the bonus, a day off!).

While giving me a very thorough exam and checking to see how much oxygen was circulating with one of those finger sensors (plenty, he was glad to report) he gently approached the subject of palliative care and end-of-life preparations. He wanted to know if I'd made any special considerations and stressed that he wants me to have quality time while I'm around and that as I'm not showing any symptoms of the lung tumors (like palpitations or getting out of breath easily) that now might be a good time to work on my Bucket List.

He asked about the home situation and listened while I explained about how much support at home I could expect from past experiences (um, not much) and then insisted on walking me down to the counseling and welfare coordination office to introduce me, hand them my file and explain a little about the complications that he hopes they can work out for me. Then he asked them to get as much info together for me about palliative care and hospices, in hospitals or at home with home nursing etc. and financial aid for a discussion on Friday, when I also have an appointment for another heart scan (looks like it's sayonara to vit. H for a while).

Next Tuesday I'll have a CT scan to get a better look at the situation. It was very sweet of him to do that for me instead of just telling me to stop by there on my way out. Probably as an apology that Tykerb is still in the pipeline and won't be approved in Japan until spring at least (I'd been hearing "this winter" until today.

I had a British friend with me today and she freaked out a bit when she saw my onco. escort me to the counseling place, but gave me real big hug when I explained what had gone down. Then went out and laughed at death's face by indulging in steak for lunch and an evil dessert (which we split and still couldn't finish) with some restaraunt vouchers I'd won from a magazine before heading home. Now it's back to broccoli, squash, carrots and brown rice for me. The restaraunt had fully automated toilets; I walked into the stall and the toilet lid whirred and raised itself, making me jump a bit before bursting into laughter.

Home for a nap (no treatment, too much lunch!) and then online to check for local resources again and update my files so I can have a list of questions for my Friday session. PLEASE FEEL FREE TO TOSS IN SOME SUGGESTIONS HERE ABOUT WHAT I SHOULD BE ASKING REGARDING HOME CARE ETC.
I'm sure some of the stuff will be a little culturally different than for Hospice in the U.S. and it'll be intersting to see what the deal is here. One of my seasonal survivors' lunch friends can help with info as she has National Hospice Association connections.
Anyway, I have some goals bumping around in my brain:
1. Accept that I'm not just letting go and living in anger or despair,
but choosing to enjoy as much quality time as possible and live
positively until the end.
2. Get over this grief!
3. Get as much info on hospice and palliative care in Japan as
possible from NCI, the internet, friends etc.(I already found a Home
Nursing Station that offers end of life care that's in our
neighborhood to deal with medical things and will ask around and see
how the people in our building have felt about them in past cases)
4. Prepare husband and kids - This is a bit of a monumental task, but a few baby steps at a time are fine.
5. Make a Bucket List
(GO SKIING WITH THE KIDS THIS WINTER!)

Looks like I'll go back on Taxotere for a few more rounds from Nov. 18 or 25 as it was effective in the past, and then when the limit is reached, take a break from treatments and let my body recuperate while I have as much fun as I can with my kids. And here I was thinking I should go get a trim. Maybe I'll get curls again the next time I get hair. Shall we take bets?

Biding time until my folks are up so I can call before I post this on my blog.

Hugs,

Hi Kathy-

I am at as loss for words... Please know my prayers are already there with you.

I wonder if there is any "black market" tykerb you could get your hands on.

Tykerb slow in coming to Japan
 

Thanks Maria,

Some women here are getting it on trial, but they needed data on indigenous types and I didn't qualify so I have to wait until spring. I plan to have fun and not just wait around though.

Hugs,

Hi Kathy,

Sayonara? I would hope not.

I'm sorry to hear that the Navelbine is not working, but I'm glad to know that you can try Taxotere again and that it worked well in the past.

How long will you be in Syracuse? Do you have access to Albany Medical Center, or that is does your insurance cover it and does your onc consult with them?

What about Tykerb, which is supposed to be more heart-friendly than Herceptin? Perhaps this could be an option.

Are there any trials available. For example there's a new class of drugs called epothilones that are similar to the taxanes (Taxol and Taxotere) in that they are microtubles that destroy the cancer cells from inside. They've shown promise in patients who are taxane resistent, and the drug does not require alergic-reaction medications like the taxanes.

Here's some information on trials that have been conducted:

http://clinicaltrials.gov/ct2/results?term=epothilones


Here's something from April on bc and epothilones (see Conclusion. I've met Linda Vahdat, whose a bc onc):

http://www.cancernetwork.com/cme/article/10165/1154655

What trials are going on in Japan?

There's also radiofrequency ablation. I had this procedure done in August for a solitary lung met, but it can be used for several mets. The procedure works best on mets that are 3.5 cms or smaller, and in the least it can help to destroy some mets, which then reduces the tumor load, which in turn helps the chemo do a better job.

I also mention this because you do not have disease anywhere else, which further makes you a candidate for RFA.

The Japanese are in the forefront of RFA:

http://www.jvir.org/article/S1051-04...029-7/abstract

Here's something recent on RFA and lung cancer that mentions the Japanese work in this:

http://www.medscape.com/viewarticle/571945

(There's a lot more on Japan and RFA on the web.)

Here's some basic info about RFA:

http://www.radiologyinfo.org/en/info...rfalung&bhcp=1

You're in my prayers for finding the right solution. Keep us posted.

Joan

Thank you very much for the excellent info and links. I'd completely forgotten about RFA! It's going on the top of my list. A triple negative friend has had success with cisplatin and gemzar, neither of which I've had so far so I'm still thinking I can buy more time with a little kickbutt here.

I won't be in Syracuse for more than a few days, if I make there at all, and my Japanese National Health won't cover anything worthwhile. Tykerb is available in trials here, but not for caucasians apparently and my onco. can't prescribe it. To bad they don't have LEAP http://www.lapatinib-eap.com/en/summary/index.html open in Japan.

Time to get a little beauty rest.

Hi Kathy,

I've been following your (very well-written) posts on this board and the yahoo group breastcancer2 (don't know if you're still on that).

I don't know what your living situation is, but have you considered at all moving to the States? It seems you may have more options here in terms of trials and vaccines. I think the bucket list is way premature.

take care,

Anna

Hi Kathy,

What about Avastin or Ixempra? Are you able to try those two drugs?

Tonya

Consider: http://her2support.org/vbulletin/showthread.php?t=35392

for the ER+ angle, maybe Medroxyprogesterone Acetate could be tried. I found a pretty amazing case study in Japan using that.

I have recently posted a bunch of articles in that section that might be of interest.

ideas
 

just sending you some hugs and prayers!

When to change tracks? The Talk
 

I am blown over by the news. I think it might be too soon to give up. You seem so full of life and physically able to do so many things
I would get a second opinion and learn as much as I could about other medicines, other medical centers, other treatment options etc. Is there a possibility that you can come to the U. S. to see what else can be done to help you? Some medical centers in the U. S. offer inexpensive housing to patients coming from other areas and there are a couple companies that fly business people around that offer free transportation to cancer patients who fly to other areas for treatment.
There are interesting articles about all the new drugs and treatments in the latest issue of Cure.
You might want to check out the online version at www.curetoday.com
Have you had recent CEA, CA 27-29, CA 15-9 blood tumor marker tests or a Her2 serum test?
I will be thinking of you and wishing the best for you.

When to change tracks? The Talk
 

I just thought of something. What about Abraxane? It is supposed to be twice as effective as Taxol. You could probably get information at www.abraxane.com. I heard Avastin is promising too. The NIH is or was conducting a clinical trial using Gemzar and of all things Mistletoe. Could you get into a clinical trial in Japan or in the U. S?

As someone that has been told to put things in order several times (and lost my hair 6 times), I am a little peeved at your docs attitude (and yours). Sorry, but it is time to gear up and NOT pack it in. There are many options for you to try as suggested by others here. I personally would move back to NY for a bit to get the drugs you can't get in Japan. I'd be signing up for Medicaid and finding a onc so fast, but that's just me...If you can't do that (understandable), besides some of the stuff that has already worked for you and the other suggestions made above, I'd be looking in to some complimentary treatments (besides the traditional medication). Japan has so much available when it comes to non-traditional treatments. I personally have taken Metaki mushroom and believe I've had great success with it. I am now taking a mushroom complex along with Herceptin and the 2 spots on my lung are half the size they were when found and still shrinking. I have found that I am selfish and refuse to live in a world without me in it. Please take some time to regroup, as I ususally do, then move on. The news is not always what it seems to be. Some people are looking at cancer as chronic disease and using one treatment until the next is needed. It's just time for you to change - NOT pack it in. I've got nearly nine years and six incidences of experience in this department. If you need to talk one on one, let me know.

Kathy - I was astounded reading your post on how elegant, articulate and calmly you wrote about this news. I don't think I'd be able to form a sentence. You must have strength of iron. That said, I agree with everyone that there are so many more meds options and it's not the time to 'make your list' but to aggressively research better options & treatments for you. I'll be watching the posts for your news of that!

I have a little over a month's worth of tykerb that I can't use as my treatment was switched & I'd already received the tykerb. I know it's not much - only a month, but you're welcome to have them if that's an option. I was told to flush them down the toilet as they can't be returned, but I can't do that -- to much $ - if I can find someone who can use them.

Keep up your great spirit and love of life.

Kathy, I'm sad that your situation is what it is, but I'm also so mad that your options were presented to you in such a limited way. I will pray for wisdom and courage and I send you my love, ma

Kathy
 

When to change tracks? The Talk
 

There have been some excellent suggestions by our members, Kathy. Please think about them.
One of our members mentioned the complementary and integrative therapies Asia (including Japan) is famous for. Why didn't your doc suggest them or offer you other choices? You seem to be physically fit and able to keep up with your children and the responsibilities of parenthood in Japan. It is hard to believe there is no hope.
Someone suggested you come to the U. S. for awhile and see what might be available to you. That might be a good idea if you can manage it. Do you have relatives or good friends you could stay with during that time? Many hospitals in the U. S. including Memorial Sloan Kettering in New York offer intergrative medicine and state of the art new therapies that offer hope to cancer patients. Some drug companies have scholarship programs for patients who have financial needs. As I mentioned before some corporate jets offer free transportation to cancer patients and some hospitals offer low cost housing options for patients coming from other areas.
By the way, if you are estrogen positive have you considered an aromatase inhibitor like Arimidex or Femara to keep the estrogen overload under control?
Where there is life there is hope !!!
We are all in your corner and will be thinking of you as you make your decisions.

Kathy,
Tykerb is not available in Canada yet, but while speaking with a nurse at Glaxo, Smith, Kline (GSK) U.S. based, the makers of Tyerb (lapatinib) she suggested that my onc. try to apply for expanded program available to foreign oncs. I ran this by my onc and he refused, but maybe yours will.
By the way, palliative is just one more label. Chose to live,
Hugs,
Diana.

Hi Kathy! I just want to say hello and I'm sending lots of sunshine and clear skies from the Texas Coast. I'm praying for you and sending love, ma

When to change tracks? The Talk
 

Kathy,
It is easy to see how much support you have at this site.
We are all supporting you and wishing you the best.
When I was in my late 20's I experienced a life changing event. My mother told me to hold my head high and keep putting one foot in front of the other and keep going. She told me things would work out. She was right. I offer you the same advice today.

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.

When to change tracks? The Talk
 

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

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

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'

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.

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

When to change tracks? The Talk
 

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/

When to change tracks? The Talk
 

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?

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.

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...

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.

When to change tracks? The talk
 

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.

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.

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

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!

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

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

When to change tracks? The Talk
 

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 !!

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.

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.)