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Old 01-15-2013, 09:56 AM   #21
kk1
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Re: perjeta with gemzar?

Cool Breeze;

Looking at your treatment history I am kind of surprised you have not had a Xeloda plus Herceptin, and some type of aromatase inhibitor. Many with liver mets have had good luck with the Xeloda as it is metabolized by the liver to 5FU. As much of the recent research has shown for Her+ and ER+ you have to block both pathways at the same time.

just a thought you might want to discuss with your Onc.
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KK1
April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets
weekly taxotere,herceptin, xeloda
Sept 2004 NED-3 herceptin, zoladex,aromasin
Dec 2006 recurrence in liver
Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex
NED 16 months added zometa
May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin
July 2008 stable...yeah!
Sept 2008 NED again !!!
Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause.
Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin.
March 2009- oophrectomy added Femara and bi-annual Zometa
May 2009- scans clear but suspect lung nodule
June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew
Aug 2009- NED
Nov 2009-scans again clear YAHOO!
March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo
Nov 2009-Nov 2019 scans clear done every 6 months


Feb 2020 - Fell out of the NED wagon hard! single liver lesions and large infect cyst. 3 weeks in ICU.
March 2021- 5 cycles perjeta, herceptin, navelbine. lesion stable.
June 2021 - 3rd liver resection to remove single liver lesion. Continued perjeta, herceptin.
Nov. 2021- PET scan show 5 hot nodes near liver. 9 cycles Kadcyla
June 2021- PET scan shows progression. nodes size unchanged but even more SUV uptake.

July 2021- start ENHERTU
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Old 01-15-2013, 12:00 PM   #22
phil
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Re: perjeta with gemzar?

Sounds like pert / gemz is a good plan , ( it will be combined w/ herceptin , ? ) and you can get it going quicker than t dm-1 . hopefully you can add t dm-1 in after ( before ) end of Feb. I would ask your doc about getting t dm-1. Plan ahead w/ him. , overall its stronger than pert. I cannot see it being delayed any longer than Feb, hopefully before. when it is appr, it will very likely focus on late stage iv, and is particularly effective on liver tumors.
KDR had good response w/ pert /t dm-1 together , and i believe she had some ER+ as well as her2 . so you should get two of the latest strong her2 txs over the next few months. don't be discouraged , Lorraine s cancer was ( is ? ) very aggressive. she blew through more tx's in 2010, thats how cancer can be , for ex. she got nothing out of abraxane, her cancer had already overcome taxotere , so another taxane wasnt going to do it. you have to keep surprising it , and gemzar w/ pert will be a surprise . For Lorraine , t dm-1 blew the cancer away . you rdoc may be good , but i dont like stats you are not astatistic. and pert is way too new for stats anyway.
as far as comp use , its a racket , betw. the FDA and co's . pts can' talk w/ fda , docs are not assertive enough , out of thier comfort zone. anyone should try it if they cant get adrug any other way , but that system needs change big-time. you can ask Darlene Gant about it , ( shes on FB ) she had to go viral to get Gen to move . she is doing well w/ just pert/ herc.
Those on Inspire , can read Lorraines latest ltr to editor about your Rights. under advanced bc discussion titled , " T DM-1 Activism " , i thought she siad it well, but thenagain, I am a little biased . Never Give Up, Keep The Faith !! No Peeking
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Old 01-15-2013, 01:22 PM   #23
cheery
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Re: perjeta with gemzar?

Coolbreeze

My heart goes out to you..a little off topic, the video was very touching and shows your intense love for your family.

I've read that Gemzar is good for triple negative BC so when used with Herceptin and Perjeta, it'll be a multi-pronged approach to hit those crappy HER2+ and any triple negative BC cells hard.

Compassionate use for TDM1 will be tough. Genentech requires you to have done Tykerb, in addition to Herceptin. My doc had tried unsuccessfully for me when my liver recurred recently.

Take care.
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Old 01-15-2013, 01:56 PM   #24
phil
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Re: perjeta with gemzar?

I should have mentioned that Lorraine had a good run on herc/ gemzar , about 1 and 1/2 yrs ! Good luck
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Old 01-15-2013, 03:03 PM   #25
Mandamoo
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Re: perjeta with gemzar?

Hi Coolbreeze.
I too am starting a 'novel' combination having had herceptin and carboplatin yesterday I will add perjeta (compassionate) use next cycle. The have been no studies on this but my understanding is the belief that a dual blockade is more effective than a single agent - adding a chemo is the bonus. I've had no platinum exposure which is the reason for going with this rather than Abraxane.

I just came off trial for tdm1 which was ineffective for me - well it slowed the cancer down but didn't stop it. If I wasn't on trial the onc said he would like to add something to it - perjeta or avastin or tykerb.

My private onc was initially a little apprehensive about the carbo preferring the Abraxane but on thinking said the platinum therapy was worth a try for me despite the luck of study into this combination. I feel we are somewhat limited by the studies as they need large groups that will give them their best results - so of course they are going to try first line and with a taxane - but that doesn't mean those of us who have been heavily pretreated will not have a response too in a different combination. They just have to get the drugs over the line with the FDA. The study just hasn't been done yet and who know may now not be - it will be up to those practicing to be guided as to what will be best for the individual patient. Here in Australia once you had tried herceptin then given tykerb a go, you have only recently been allowed back on herceptin - because there was no study saying it would help. You still have to jump through hoops to get it without a taxane.
I'm glad you are giving it a go. I have a goal to see my son finish school too - the catch for me is he doesn't start prep for a couple of weeks - lofty ambition hey? Who knows - maybe something will work a little better for a bit longer and then something better again. I may be living in the clouds but currently I'd rather that.
I hope the treatment is gentle with you. A xx
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40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 01-15-2013, 03:39 PM   #26
ElaineM
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Wink Re: perjeta with gemzar?

Wow !! Just look at the potential options and choices you have !! See what happens when you put a group of great minds (members here) together.
According to your bio you haven't had alot of different chemo combos even though you have had a considerable amount of chemo. I have another suggestion. You might want to ask about using a chemo you used in one combo with another combo. For example some people use Taxol or Abraxane and Herceptin, but Taxol or Abraxane can also be used with Tykerb instead of Herceptin. Either you or your oncologists can look up different combos on the internet and come up with something that might work if all the other options suggested here do not seem to be workable.
I always believed one doctor does not know everything about everything. Doctors can always learn more about their choosen fields just like other professionals can.
Make a list and chat with your oncologists about all the suggestions here. I bet something good will come out of that chat.
All the best Cool Breeze.
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Old 01-15-2013, 05:16 PM   #27
Bunty
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Re: perjeta with gemzar?

Hi Ann, I can't add any information to this thread, but I can certainly add my good wishes to you for finding the combo that will work best for you!

Thinking of you and all the others here who are forging ahead with these new combos and drugs. It is indeed hopeful times for those with Her2+ BC.

Cheers Marie
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dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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Old 01-15-2013, 05:36 PM   #28
cheery
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Re: perjeta with gemzar?

Hi Mandamoo/Amanda

I was wondering, why not do Abraxane, Carbo, Herceptin & Perjeta combo? TCH is the golden combo for HER2+ BC and Abraxane is part of the taxane family. My onco said he didn't suggest Abraxane as it's expensive compared to Taxol, but Taxol has more side effects.

While a 2nd opinion onco suggested Taxol alone for me, my onco was determined that I do Taxol, Carbo and Herceptin combo to get the maximum benefit in overcoming Herceptin resistance. He said Taxol and Carbo have synergistic effects as does Taxol with Herceptin. Following TCH, the liver met shrank. Of course, I'll never know what did the trick - be it Taxol, Carbo or Herceptin alone or a combination of either/all but I'm just thankful.

Just a thought. Ultimately it's your decision with your oncologist hope the next treatment will kick those BC cells away!
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Old 01-15-2013, 11:36 PM   #29
Mandamoo
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Re: perjeta with gemzar?

Cheery - I did bring it up with both oncologists I saw but the feeling was that the toxicity was not worth it and that the synergistic effect was questionable. I'm ok with this for now. I have Abraxane up my sleeve too - I guess I've just been on constant chemo - I've always wished I had the TCH combo vs the FEC-HT combo at the beginning but it's too late now for regrets. I think because we are adding perjeta too if we then had the C and T there may not be much benefit - such a guessing a game.
Thanks for your input - I will ask again at my next appointment about the synergies of t and c in combo vs c alone with herceptin.
A xx
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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