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Old 03-17-2011, 10:17 AM   #1
KDR
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How Long Have You Been On Taxol (Stage IV)?

Everyone,
Hope this post finds you all well and happy.
I am wondering how long you stayed on Taxol, on an indefinite basis? My oncologist has had survivors on for years and years. I'm doing well, currently NED, but have to continue treatment as my doctor believes
evidence-based medicine indicates a stronger cancer could occur should I stop (right now). I achieved NED status after six months of treatment, and I'm doing well, but am starting to feel tired.
Thanks,
Karen
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Old 03-17-2011, 10:32 AM   #2
Jackie07
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Re: How Long Have You Been On Taxol (Stage IV)?

Karen,

Most members are (have been) on Herceptin maintenance. One way to see the use of Taxol (or other types of Taxane) is to look at the long-term (long-time) survivor threads (Bejuice has started one of the threads lately) and screen members' treatment history in the signature field.

Hope others will see this and reply.
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Old 03-17-2011, 10:52 AM   #3
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Re: How Long Have You Been On Taxol (Stage IV)?

I would get a second opinion. I was given TCH (Taxol, Carboplatin, and Herceptin) when I was diagnosed with Stage IV breast cancer (metastatic from the get go). After 3 cycles (months) I was NED. I continued the chemo for 3 more months for a total of 6 months. I have been on Herceptin and Femara and Zoladex and Zometa only (without chemo) since that time, and it has been about 3.5 years since I stopped the chemo. I am still (knock wood) NED. (I did later have cancer found in my good breast, but it was caught very early and was tiny.)
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Old 03-17-2011, 12:57 PM   #4
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Re: How Long Have You Been On Taxol (Stage IV)?

My doctors (one is a top researcher in Breast Cancer) had a different opinion, which was to hit it hard (TCH) for a limited time (6 cycles), then try and maintain on Herceptin alone. Then if/when the cancer recurs, you can still get synergy by adding the chemo back. Or try other, more targeted approaches.

We considered it a "less is more" approach which takes into consideration the importance of conserving your body's personal resources and strength. As you know, with Stage IV it is a marathon, not a sprint.

Everyone's situation is different of course, and I've also found that if you get 2 opinions you have to be prepared for (at least) 2 possible recommendations! However, both of my oncologists basically concurred on the combo treatment followed by maintenance. In my case (as in yours) the chemo smacked things into remission. I was able to maintain on herceptin alone for 2 years after that. Like you, I was "chemo naive" at Stage IV diagnosis (with I think much more extensive liver involvement than you) but I don't know if that was a factor.

At a minimum, your doctor may consider a chemo holiday appropriate. And of course you can get other opinions. And in the end, it's your decision!

In retrospect, I think the course I took was a good one for me - and is a fairly standard approach. I enjoyed a complete remission for a couple of years; then had options to go back into a traditional chemo again or choose to participate in trials of more targeted agents (which I did).

All that has allowed me to "buy time" in a way that has not interfered with my participation in life. One thing my oncologist has said to me on each occasion (even now, following a questionable scan) is "you have a lot of options".

And I think at this point, this is true for you as well.

Take care
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure

Last edited by chrisy; 03-17-2011 at 01:00 PM..
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Old 03-17-2011, 01:29 PM   #5
Lauriesh
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Re: How Long Have You Been On Taxol (Stage IV)?

I also did 6 months of taxotere,Herceptin after being diagnosed stage 4, and am now doing Herceptin. I plan on adding in tykerb at the end of this month, and I am hoping that this combo will keep me NED for a long time.

I did taxol for three months when I was first diagnosed, stage 2 in 2005. I developed horrible neuropathy and had fatigue also. It did work though. I was NED for 5 years.


I belong to a number of different stage 4 boards, and I don't think I have ever heard of someone who is NED continue on with chemo indefinitely.

Laurie
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Old 03-17-2011, 02:01 PM   #6
Ellie F
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Re: How Long Have You Been On Taxol (Stage IV)?

I agree with what has been already said. Here in England it seems to follow the same pattern.

Ellie
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Old 03-17-2011, 06:01 PM   #7
KDR
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Re: How Long Have You Been On Taxol (Stage IV)?

Thanks, Chrisy. What is chemo naive? I have been very anxious myself about the possibility of stopping the chemo as it seems my cancer is very aggressive (pathologically speaking). So, while I have noticed that some have stopped chemo, it also concerned me that mets occurred in many instances within just a few months. It's a hard call. I really appreciate the sharing of information and personal stories here. Some theorize that as long as chemo side affects are minimal, one should wear that shield.
I guess the next few months will be quite telling on how to proceed...and my oncologist will most likely require at least another scan or two to see if I've maintained NED. It was mentioned we might be discussing options in July.
Thanks,
Karen
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Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.

Last edited by KDR; 03-17-2011 at 06:38 PM.. Reason: double wording
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Old 03-17-2011, 08:07 PM   #8
chrisy
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Re: How Long Have You Been On Taxol (Stage IV)?

Chemo naive... Had never been exposed to chemo before. Ditzy cancer cells that Didnot know there was danger out there until WHAM comes the taxol.
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 03-18-2011, 12:34 AM   #9
Trish
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Re: How Long Have You Been On Taxol (Stage IV)?

Karen
As you can see from my signature I have been on one chemo or another since early 2007, soon after my liver mets were diagnosed. Unfortunately I have never made NED and have switched chemos when the tumour markers have started to climb. I have been on Abraxane since August and although my TMs are still dropping I am going to stop for a while because the fatigue is starting to make my usual busy life more effortful. I have peripheral neuropathy but it is manageable so that wasn't the key factor in my decision. I will continue Herceptin and Tykerb and possibly add an anti hormonal and see how things go. There are a lot of unknowns and guesswork involved in these sorts of decisions. You have to balance the long term possibility of serious problems from chemo with the benefits. It is great that you are NED but this makes it hard to evaluate the benefits of being on Taxol. Good luck with your decision, may NED end your signitaure permanently!
Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
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Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
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5/2010
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8/2010
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9/2010
Abraxane
12/2010
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4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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