Preventing chemotherapy without evidence

Good Day Tofu,

Dear Connie, and everyone,
I sent a private message to Joan2844 from the member list.
Is it right?
I am well now, and take a long walk under cherry blossoms every day.
Thank you for all.

This is joan2844.

Hello, Tofu. I read your full post, and decided to post a response here. You sound very strong and well informed about your cancer and treatment options -- both will help carry you through this storm in your life. How lucky you are to have the cherry blossoms -- what a beautiful place to reflect and heal.

It sounds to me that your treatment is all finished, and you are considering more chemotherapy as "insurance" against a recurrence? That is pretty much the situation that I had.

My chemotherapy and surgery were done 2 hours away from my home, and we have three small boys (now ages 15, 13 and 8). I had chemotherapy before my surgery.  Six rounds of TAC (taxotere, andriamiacin and cytoxane). After the surgery, my oncologist said that I had a "partial" response to the chemotherapy, meaning that it had not totally "melted" away my tumor. Since that time, I have read that pre-surgical chemotherapy rarely gives a "complete" response. Partial is more the norm.

My oncologist wanted to do some follow-up chemotherapy "as insurance." He had me complete my 36 treatments of radiation first, because he said that was proven, effective treatment. Follow-up chemotherapy was just his professional opinion.

Since I would have had to drive to his office for IV chemotherapy of Gemzar and Navelbine (given at the same time) he allowed me to do  7 rounds of Xeloda by tablet.  I visited his office for follow-ups every 6 weeks, and had blood work done (results faxed to him) every 3 weeks.  I had very mild side affects through out all of my treatment, and the time on Xeloda was no exception. It made me tired. Made my hands and feet itch some, especially toward the end of the treatment time. But overall, it was very tolerable.

My oncologist was vague about suggesting the Xeloda and had only a "best guess" about how long it should be prescribed for me. I think he was reluctant to say anything definite because there are no studies that prove follow-up chemotherapy will keep a woman from recurrence. But, he did say that MD Andersen was doing some studies about the benefits of follow-up chemo -- he said he would rather have followed their lead in my case than wait to get the "official" results. He knew that I was healthy, trustworthy (to take the medication on my own) and had tolerated the other treatments well. At the end of my treatment, he asked how things had gone for me. I answered fine, with only a few complications. We both agreed that I had lost very little by taking the Xeloda, and we're hopeful that I've gained a lot in return!?

Cancer treatment is such an inexact science. Trust your doctor. Trust your instincts. Enjoy those cherry blossoms!

How else can I help you? If you have found this site, then I suspect you have found internet information about the chemotherapies you are considering?

My xeloda was by pill form, so I am surprised you are talking about drinking it?

Let me know how things go for you. I want to hear back from you. I am glad that Connie suggested you contact me.       

Connie,

I would be  interested to know your conclusions about Avastin. I thought it was not a viable option for trip-negs? And, it can also cause heart damage? 

I'm not sure if I'm right about either of those...

I find so much information about breast cancer (I love "google alerts"), but find it hard to keep it all straight. As I get further away from treatment, I feel less urgency to keep all the information straight, too.

I get the results of my most recent (annual) breast MRI tomorrow... Praying for good news! 

Connie,

I found the trial, thanks. The link for it is here http://clinicaltrials.gov/ct2/show?cntry1=SE%3ATH&rank=33. 

This is not one I am sure I would jump at to do -- sounds like standard chemo is given as well as Avastin.  Could be a double jolt to the heart?

Avastin was recently approved by the FDA for breast cancer, but with a lot of controversy.  Use google "News" to find more information.

Joan

Thanks, Pam. Acutally, the results could have been better --they found an "inconclusive" area tht sounds pretty conclusive to me -- it has size, increased vascular activity (tumors need blood) and a biopsy is schduled for tomorrow (Tuesday) @ 2:15.

Dear Joan,

Cg---, you might want to check out my post last week on "Anthracyline-Heart Problem Weak Link".  It looks as though the anthracylines may not cause heart problems for triple negative women after all.

Thanks Joan,
I am pleased to hold our experience in common, and
I pray for you and believe your good result of MRI.
I am also very glad that Connie suggested me contact you.
Your massages and experiences makes my mind at ease and your oncologist advice gives me the strength for the future chemo.
My hospital is belonging to my city university, not best for a TNBC patient, but very close, about 3km from my house. There are good breast surgeons and an excellent reconstruction surgeon and no oncologist. When I have a question about my chemo and side-effects, I go to the other hospital which is 10km far from my house and has an excellent oncologist who kindly answers me and send his advice letter to my breast surgeon.
After his advice I thought the side effects of Xeloda were more acceptable than Binorelbine
since now I have the inflammation of vein by EC-T and afraid of an implantable subcutaneous infusion port.
If I recovered from my inflammation of vein, I would try Binorelbine.

My breast surgeon Xeloda regimen is
Cycle: Three week taking and one week rest, so-called A-method
(B-method is two week taking and one week rest, one time drug dose is more than A-method)
Duration: One year
I do not know which is better, A-method or B, and feel the one year is too long..
I will ask my oncologist again about the regimen.
I have not started my (follow-up insurance) chemo yet.
I am waiting recovery from my numbness in a limb, but I promise you and all to report my follow-up chemo.

--Joan wrote:--
>My xeloda was by pill form, so I am surprised you are talking about drinking it?
Sorry, we are also taking Xeloda pills,
drink pills (with a glass of water) is my Jinglish (Japanese-English).



Edited by tofu - Apr 09 2008 at 9:10pm

Dear Connie,
I apriciate for your help.
>I wonder if you are taking anything for your limb numbness?
>Is it from taking Taxotere?
My limb numbness comes from 12cycle weekly Taxol. It looks like the Xeloda side-effect, hand-foot desease symptom and I am worried about not discrimating Xeloda side-effect from Taxol one and my doctor and I am waiting for the recover. Now my hands have the recovery, and my feet become better.
>Johns Hopkins is currently doing study on Xeloda - different dosages. 
>I think they are finding it is effective at lower dosage - minimizing the side effects. 
I am interested in the Johns Hopkins study and the guideline for Xeloda of ASCO or other cancer academy.
My doctor, breast surgeon regimen is A-type, three week taking pills twice a day, and a week rest. I heard the dosage of Xeloda for one time is
1200mg (surface area 1.31m2-1.64m2, I have 1.5m2)
The other hand B-type, two week taking pills twice a day, and a week rest. The dosage is 1800mg = 1.5 times of A-type.
I asked my doctor why he selected A-type, and he answered he had not tried B-type, only done A-type. It could not saticefied with me.
I think I am too doughtful for my doctor, but I would like to know the reason or references.
God bless you, Connie and everyone.


Edited by tofu - Apr 09 2008 at 3:21pm