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Old 11-28-2007, 11:04 PM   #1
Adriana Mangus
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Question Gemzar or Taxol

PLEASE I NEED YOUR OPINION, THIS IS SOMETHING I CANNOT DO ALONE.


Hi Everyone:

After almost five years since recurrence, I need to decide whether to add gemzar or a taxane to Herceptin. Please help!!!.

I have had navelbine+herceptin twice, navelbine has lost its effectiveness, Onc and I need to make a decision next year, after I obtained the CT chest scan results. He's not discouraged nor overly concerned about the latest CA 2729 # (45), he said that numbers fluctuate all the time. I do not like the number a bit. You probably have read my profile and have much more experience in dealing with this specific type of mets. Any help would be very much appreciated.
In reading the postings, I see that a lot of you have had either Taxol or Taxotere and have had excellent results. I read about Gemzar and it's also a very effective chemo (synergy) in combination with Herceptin.

Thanks so much for your help....Much love to all of you.
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 11-29-2007, 05:54 AM   #2
Grace
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Adriana,

I can't help in your drug decision but I should mention that my 27-29 was 45 fifteen months ago but, after lots of scans, MRI, nothing was found. It went down to 37, then to 34, and now is 37 again. My oncologist, like yours, says there's nothing to worry about. And perhaps they're right, although it is difficult not to worry. Do you know what earlier numbers were? You may just have a higher than normal number.
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Old 11-29-2007, 06:02 AM   #3
tousled1
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Adriana,

I can't offer you any advice on what you should do. I had taken Taxatere when I was first diagnosed and had good results with it. I'm currently on Taxol/Carboplatin and so far it appears to be working. I have no experience with Gemzar. I will keep you in my prayers.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 11-29-2007, 06:22 AM   #4
Jade
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Hi Adriana and Grace!

I'm another one who has consistently high CA-153 (CA 27-29) results - they are always 37-40. My onc stresses that I shouldn't worry about this, that my 'normal' is at the high end of the range but it is normal because it is consistent. It's when the markers show a steady rise that there is cause for concern.
What I find unsettling is that the number actually went down to 27 while I was on chemo/herceptin, seemingly indicating the drugs were working, kicking cancer butt. So, what does it mean when the numbers climb back up to the high end of the range and remain there (15 months now)? Nothing, according to my onc. It's only when there's a steady increase that there's something going on. Adriana, I can't help with your drug decision either but I hope the tumour marker information will help.
Hope your day is happy,
Jade
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Dx Nov.04 - Stage 1, Grade 3, widespread high grade DCIS, Paget's disease of nipple, 8mm tumor invasive DC (ductal carcinoma), ER/PR-, HER2+++
Nov.04 - left mast., clear margins, 6 of 6 nodes clear
Feb.05 - began EC chemo, 4 rounds (every 3 weeks)
Aug.05 - began Herceptin every 3 weeks for 1 year
Aug.06 - ended treatment
NED
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Old 11-29-2007, 08:52 AM   #5
Mary Anne in TX
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Hi Adriana!
When I was first diagnosed, my onc asked me if I would give him permission to treat me very aggressively. I didn't really know what that meant, but I knew that inside the answer was yes. He layed out a plan of action with "other options" if something along the way didn't work. You can see by my signature what I did: Adriamycin & Taxotere X 3, Taxol, Carboplatin, Herceptin (dose dense) X 8. Navelbine & Herceptin (dose dense) X 8. And now just the Herceptin. Out beside the 2nd and 3rd cycles he had written Gemzar to be used if one of the others was not effective. And he had told me that when we got to the end of the first year, I could decide to add Xeloda if I felt I needed it. As I have read the information about the drugs over time, I have come to believe that for my situation, the choices were right on (I don't think we really know yet what is best....they're still trying to figure it out). The place I go for treatment does tons of phase I and II trials and is world reknown for the testing they do on drugs. I trust what advice I get there. But we have different needs and what I did seems to have worked for me (who knows!!!) but it's not an easy decision. Read tons about the drugs and just do your best in deciding.
Oh, yes, my tumor markers (CA 27-29) ranges in the 30s to upper 40's since an early 28. I believe that it indicates something being "held back" for now by herceptin, but that's just a "gut" feeling.
Well, obviously, I don't know what is best, I just want to support you in reading and asking and tell you I'll be praying about your decision. ma
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 11-29-2007, 09:22 AM   #6
Grace
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Dear Jade,

I had a similar experience. Right after surgery, my number was 41+, a few days later it was 45. Then it went down, finally, after ten months of herceptin, to 34, and it's now up to 37. My HER2 serum was 16 and at end of herceptin was 8; still waiting for that result. My oncologist tells me the same as yours--you're at the high end of normal, and I know I should listen but there's always that lurking fear. Thanks for posting your number; your 15 months at the high end with nothing happening is encouraging. All my other blood results are the best I've had in 15 months, so as always fingers crossed. Oh, and I had exactly the same reaction when mine went down while on herceptin. If my normal is high end, why did it go down? But perhaps we assume more logic to this madness than actually exists.

Adriana--I hope that you also are at the high end of normal even in the best of times.
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Old 11-29-2007, 11:38 AM   #7
jml
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Gemzar + Herceptin...working like a dream!

Hi Adriana~
I'm on Gemzar + Herceptin, so far 2 cycles (4 doses) & it has worked like a dream, Thank God!
I had a couple of supraclavicular nodes that popped up, one of them last May, but stable until my most recent scans + a new one.
Even thoughTaxol + Herceptin has always been really effective knocking my disease back each time I've recurred, this time I decided to roll the dice, try Gemzar & save my hair!
Within the first treatment, my blood counts took a major hit, so much they werent sure if I could get my 2nd week treatment. More importantly, I felt a change in the nodes within days. With each dose, the nodes have melted away. I also broke out in a really gross rash, but nothing too dreadful. I'll probably do 1-2 more cycles before we scan again, but based on what we can/can't feel, Gemzar seems to be really doing the trick.
My schedule is Gemzar- 2 weeks on, 1 week off + Herceptin-q3week dose.
That means the I get my q3week Herceptin w/Week 1 Gemzar, Week 2 Gemzar solo, then the 3rd week is off.
It's nice to have atleast 1 week off.
I was apprehensive about trying something new, especially since Taxol worked so well for me in the past, and b/c navelbine didnt work at all when I first started, but I'm glad I took the chance.
I feel very, very fortunate!
If you choose this combo, I hope & pray you have equally as wonderful results.

Keep the Faith~
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Old 11-30-2007, 12:28 AM   #8
SoCalGal
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My 2 cents

Hi Adriana,

I was on carbo with gemzar. I did the gemzar alone every 2 weeks so I can say the side effects were not too bad.

I just saw John Glasby yesterday and he recommended that I try herceptin, avastin and tykerb. If I need to add in a chemo it will be navelbine so there you have it!
xoxo Wishing you well, Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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