Preventing chemotherapy without evidence

Hi Joan2844 and welcome back from your mastectomy.

Dear everyone,

A little long time no see.
 
Today is my birthday. Happy birthday to me.

I'm fifty and fine, and having Xeloda more than three months.
But my inflammation of vein and shoulder stiffness is continuing.
When I checked the Joan's blog, it encouraged me often.

My side-effects are not so bad.
Thank you for your advices they make my side-effects better.

1st cycle: 1200mg x 2 times a day in three weeks and a week rest
 A little pain of hands and dry skin of my feet.
 I used vitamin B6 and ureal cream for my feet.

2nd cycle: 1800mg x 2 times a day in two weeks and a week rest
 A little pain of hands and feet and dry skin of my feet
 with blistering and scaling dermatosis (desquamation).
 I added steroid ointment for my feet.

3rd: 1800mg x 2 times a day in two weeks and a week rest
 Same as 2nd cycle

Today I start the 4th cycle and my blog in Japanese.
At first I introduce this cite for Japanese TNBC patients.
I'd like to increase more access from them.

See you.
God bless Joan and everyone.

Edited by tofu - Aug 05 2008 at 4:02am

Happy Birthday Tofu!  I hope your day is a wonderful day and you do something special for yourself, you sure deserve it.

Dear everyone,

I finished 5th cycle of Xeloda.

Thank you for your encouragements, and they make my mind stronger.

My side-effects are not so bad, but a little heavier.
A little pain of hands and dry skin of my feet with dermatosis (desquamation).
I use vitamin B6 and ureal cream with steroid ointment for my feet.
Sometimes I feel tired in sommer hot weather, but sleep off fatigue.

I introduce this cite for Japanese TNBC patients almost every weekend.
Cheking the forum for introducing, I learn many kowledge again about the therapy and how to treat my side-effects.

Thank you so much.

God bless everyone.

Hi Every TNBC member,

I am doing 7th cycle of Xeloda.

Thank you for your messages and e-mail, I got a lot of energy from them.

My side-effects are almost same, but Xeloda cycle by cycle it becomes heavier,
especially low diminished appetite and fatigue, but acceptable.

A little pain of hands and dry skin of my feet can be accepted,
using vitamin B6 and ureal cream with steroid ointment.

Nancy kindly sent me the "chemo and radiation tips" file, and my friend (who is working for UN and JICA) and I translated it in Japanese and upload on my web, --> here.
Many patient friends are reading it and encouraged.
Thank you so much for the TNBCF gals and Nancy.

I drink a lot of water and organic tea everyday. This is my small chemo tip. The tea I often drink is a kind of green tea, so called "coarse tea (Ban-cha)" which is cheaper than green tea but  has lower caffeine and higher cathechin. High grade green tea needs to use lower temperature hot water, but coarse tea needs boiled water like black tea and higher temperature hot water can make higher density cathechin which is good for preventing cancer.

Last week I supported a meeting of BC patients and reconstruction surgeons,
passing busy days for preparing lists, name cards,
and plans for the communication between patients and doctors.
More than 200 patients attended the meeting and had
lectures, lunch and dinner meeting in Yokohama.

There are few reconstructed BC patients in Japan because of many reasons.
I heard only 5% mastectomy patients had done reconstruction.

So my friend who reconstructed her breast four years ago with DIEP-flap method
holds monthly meeting for reconstruction applicants with patients who have
done reconstruction.
I reconstructed my breast  with the same method by the same surgeons in Feb.  2008
and now sometimes cooperate the meetings.
Our reconstruction surgeons started their lecture for BC patients last year,
and the annual lecture was also held last week.

Now I finished all works after the meeting, and have a little rest.

Enjoy your good season.

God bless you,


Edited by tofu - Oct 11 2008 at 12:24am

Hi tofu,

Hi every TNBC member,

I wish all, your happy new year.

I am doing 12th cycle of Xeloda.

My Xeloda side-effects become a little heavier, but acceptable.
I feel low level nausea and fatigue, also.
There are a separation of the fifth toe nail plate from nail bed, a little pain and dry skin of my feet.

I will have a health check, CT and mammography screening at the end of January, since I had a mastectomy and reconstruction a year ago.
Really Time has wings. I wish my breast cancer also had flied.

God bless you,

Edited by tofu - Jan 17 2009 at 3:07am

Dear Connie,

I finished almost two third of 16 cycle Xeloda.
My doctor wants to continue Xeloda one year, till May/2009.
The goal is coming soon with the spring season.

>I have my CAT scan on January 28 and had mammogram and ultrasound.
>Please continue to read all the recent updates and research that Nancy and
>Pam post for us in the one forum dedicated to studies and articles.

I often check TNBCF cite and translate those interesting information in Japanese, and write down on my blog.

Thank you very much for Connie, Nancy, Pam and others on the TNBC Forum.

Hug with love from Far East

connie,
i agree about perhaps putting TNBCers on a maintenance dose of chemo for a year.


Edited by krisa - Jan 18 2009 at 6:40am

Thanks Connie,

It is also cold in Japan, but in my home town, Yokohama almost every day it is dry and sunny.

If I feel worse than now, I'll reduce the Xeloda amount.

I tried at first a low dose four week cycle Xeloda which is called "A" method, and common in Japan, but after that I tried a three week cycle Xeloda which is is called "B" method , higher dose but shorter cycle. The  three week cycle method was felt easier because one week off came earlier.

To tell the truth my doctor at first recommended me to have lower dose "A" method. So it is easy to change my dose lower.

I checked  lower dose Xeloda methods. I couldn't find a study of one week on and one week off by Johns Hopkins, but found like below.

(1)a trial of Johns Hopkins cite (3 week cycle)
http://www.hopkinskimmelcancercenter.org/clinicaltrials/protocol2.cfm?pID=J0425

(2) T. Taguchi at ASCO Sep/2008 (4 week cycle)
http://www.asco.org/ASCO/Abstracts+&+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=58&abstractID=40325

(3) E. Levy et al at ASCO 2008 (3 week cycle)
http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=58&abstractID=40386

(4) Taraina et al at ASCO 2008 (2 week cycle with Xeloda and others)
http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=30463
They described the optimal dosing schedule for C to be 7d followed by a 7d rest (7 - 7)
Ref. (Norton et al, AACR 2005).
http://theoncologist.alphamedpress.org/cgi/reprint/10/6/370

(5)Taraina et al
http://www.ncbi.nlm.nih.gov/pubmed/18398145?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
Phase I study of a novel capecitabine schedule based on the Norton-Simon mathematical model in patients with metastatic breast cancer.　(2 week cycle with Xeloda)

I appreciate you cheer me up.　Please, take care in colder winter.

Suzanne,

I'm glad to hear about your daughter. I live in Yokohama, Japan. Nirasaki city is more than 100km (60mile）　from Yokohama. Maybe the distance is as same as Philadelphia and New York. I have  not  been to Nirasaki, but it is very famous for soccer football. I hope your daughter and friends have a good trip.

See you soon,


Edited by tofu - Jan 21 2009 at 1:49am