HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)
-   her2group (https://her2support.org/vbulletin/forumdisplay.php?f=28)
-   -   Results to Report After 15 Rounds of Taxol (https://her2support.org/vbulletin/showthread.php?t=47436)

KDR 10-30-2010 12:07 PM

Results to Report After 15 Rounds of Taxol
 
Hi, everyone,
Wanted to report in on some good news regarding my CEA test this month. (That is the tumor marker/cancer embryonic antigen test). The normal range is [0-5.0]. The day before I started chemo 22 July, I was 599.1. At the end of September, my number had dropped to 30.6. Had another test done yesterday and my new number is 10.4. Unbelievable! I get to have a break this week for the first time in 15 weeks of (weekly) Taxol and Herceptin. All scans were clear last week (brain, abdomen, pelvis), and the tumors have shrunk by at least 50-75% if they are not gone. Anyone else at Stage IV ever get off chemo and just be on maintenance? How long did it take you? Thanks!

Cal-Gal 10-30-2010 03:18 PM

Re: Results to Report After 15 Rounds of Taxol
 
Congrats Karen on your tumor markers, that is pretty amazing!!!

It is an honor to have you on this board, you are, in the true sense of the word a survivor!!!

Continued good luck to you, sorry not able to answer your question.

Hugs,

ElaineM 10-30-2010 04:46 PM

Re: Results to Report After 15 Rounds of Taxol
 
All I can say is "Wow !! This is fabulous !!!!!!"
Congratulations !!!!!!!!!

Jackie07 10-31-2010 12:24 AM

Re: Results to Report After 15 Rounds of Taxol
 
Congratulations!

Thanks for sharing the wonderful news. Most of the (new)members seem to be following the schedule of continuing Herceptin up to one year.

KDR 10-31-2010 11:34 AM

Re: Results to Report After 15 Rounds of Taxol
 
Thanks! Now that numbers are getting there, and the scans are o.k., what can I expect? More chemo? How do doctors usually decide chemo is not necessary anymore and switch to maintenance, such as Herceptin for a year? I don't think I'll ever (at Stage IV) be off maintenance for any period of time. Veterans encouraged to responsd.
Thanks
Karen

chrisy 10-31-2010 12:47 PM

Re: Results to Report After 15 Rounds of Taxol
 
Hi Karen,
First, let me echo the earlier sentiments: Good for you! What a fabulous response to the chemo!

As a matter of fact, many Stage IV Her2+ gals do go on maintenance Herceptin after the initial chemo treatment. My oncs differed slightly in their criteria but both agreed to hit it hard at first, then stop the chemo and maintain on herceptin alone. I had 6 cycles of Taxol/Carboplatin/Herceptin that looked like this: 3 weeks of all 3 then 1 week herceptin alone. Six times, so in all about 6 months. Midway through, a scan showed about 50% reduction; after cycle 6 there was further reduction but still some visible spots that they believed to be necrotic (dead) tissue that would fade out. Tumor markers were never that meaningful for me, so they don't rely on them. I think it's a blessing that you do have this as another measure of what's going on...in your case the dramatic decrease would seem to support the idea that what is still "visible" might not be active cancer any more but rather dead cancer (the only good kind).

In the case of Stage IV cancer, many feel that less is better in terms of chemo - it is a marathon not a sprint, and it is important to keep your body's own resources strong. So for many folks, the strategy is hit actively progressing disease, then pull back and maintain.

How long someone is able to maintain on herceptin is different for everyone. Some get nice long rides, others find they have to change horses sooner. You don't know until you know, but I think the strong response you had is a good sign. Be hopeful.

Much love,
Chris

chrisy 10-31-2010 12:50 PM

Re: Results to Report After 15 Rounds of Taxol
 
Hi Karen,

I think I was not clear in my response. Most Stage IV people after chemo do continue on Herceptin "indefinitely" which means until the cancer figures out how to escape the herceptin. This varies and can be a short window or could be for years.

caya 10-31-2010 09:20 PM

Re: Results to Report After 15 Rounds of Taxol
 
Congrats Karen!! Great news, thanks for sharing...

all the best
caya

(Caryn)

StephN 10-31-2010 09:28 PM

Re: Results to Report After 15 Rounds of Taxol
 
Great news - which means you are a "responder."

In my case I took 28 weekly treatments of Taxol, Navelbine and Herceptin. All three drugs EACH WEEK.

This was very effective for me. And I then maintained on Herceptin and Zometa. Dropped the Zometa and kept on Herceptin till about 2 years ago. Now I am maintaining on a wing and a prayer. You may get to the same point if you can hold off your disease with Herceptin and some Zometa as protection for your bones.

Keep up the good work.

Trish 11-01-2010 02:55 AM

Re: Results to Report After 15 Rounds of Taxol
 
Fantastic. Thanks for sharing.Obviously you are a responder, a survivor who is coping with a chronic disease. I visit this site often for news like that.
Trish

KDR 11-01-2010 10:40 AM

Re: Results to Report After 15 Rounds of Taxol
 
Thanks for responding, everyone. There are so many levels to this cat and mouse game. I'm excited but can't afford to be too excited. Stephanie, your story amazes me. No meds?! I'm afraid of that. That'll be my next battle: overcoming the nakedness...no drugs in me to keep the little c down.

StephN 11-01-2010 01:53 PM

Re: Results to Report After 15 Rounds of Taxol
 
Dar KDR -
Several of us here who had NED status for years on Herceptin took the leap and stopped the drug. That includes Christine, the founder of this group. She is more than 2.5 years off Herceptin and no cancer detected so far on her every 6 month checkups.

Also AndiBB. It took some doing to shed our "security blanket" called Vitamin H. Once some ladies did it and were OK, it gives one a little more courage to give it a try and weaken the bonds to our cancer centers a litttle more. My med onc has a couple other patients who have stopped Herceptin on the basis of my success.

For a disease that was never supposed to have a cure, some of us are as close as we can get to that word! Thank goodness ...

Hope one day you will join our small, but growing, club.

Joan M 11-01-2010 09:36 PM

Re: Results to Report After 15 Rounds of Taxol
 
Karen,

Great news on the Taxol results.

Joan


All times are GMT -7. The time now is 03:02 AM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021