When to change tracks? The Talk

Kathy S in Tokyo · 11-04-2008, 06:00 AM

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,

mts · 11-04-2008, 06:34 AM

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.

Kathy S in Tokyo · 11-04-2008, 06:55 AM

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,

Joan M · 11-04-2008, 07:11 AM

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

Kathy S in Tokyo · 11-04-2008, 08:18 AM

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.

atdec05 · 11-04-2008, 08:45 AM

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

Faith in Him · 11-04-2008, 09:51 AM

Hi Kathy,

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

Tonya

Rich66 · 11-04-2008, 10:29 AM

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.

Joy · 11-04-2008, 01:51 PM

Not many new ones, but I was also thinking a platinum drug, gemzar, taxanes. It really seems as though you have not had a lot of different drugs (not to belittle your experience with what you have had cause it all stinks, really). The point is, depending on Japan's approved drugs, you should still have a lot of options. That is the energy I am sending you. Please keep us posted and maybe we can all be creative.

juanita · 11-04-2008, 04:51 PM

just sending you some hugs and prayers!

ElaineM · 11-04-2008, 07:35 PM

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.

ElaineM · 11-04-2008, 07:41 PM

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?

madubois63 · 11-04-2008, 10:57 PM

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.

Pam P · 11-05-2008, 04:11 AM

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.

Mary Anne in TX · 11-05-2008, 06:54 AM

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

Believe51 · 11-05-2008, 07:08 AM

Firstly I admire your strength to provide us with such a detailed and honest post. Please do not give up yet Warrior Woman, keep fighting and trudging forward in search of any more options. I am taken aback from this news and keep you close in thoughts as you sort all this out. I pray that you find peace through this all and receive all the answers you seek. In the mean time I will beg for your miracle and keep you warm in my heart. We are all right here. Lots of love>>Believe51

ElaineM · 11-05-2008, 12:41 PM

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.

Diana1993 · 11-06-2008, 06:45 PM

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.

Mary Anne in TX · 11-07-2008, 04:12 AM

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

ElaineM · 11-07-2008, 02:03 PM

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.