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Old 10-17-2016, 06:49 AM   #1
Lani
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important new report: benefit of TDM1 after herceptin + perjeta raises?

should TDM1 be used earlier?

See article & accompanying editorial

http://jco.ascopubs.org/content/34/29/3511

© 2016 by American Society of Clinical Oncology
T-DM1 Activity in Metastatic Human Epidermal Growth Factor Receptor 2–Positive Breast Cancers That Received Prior Therapy With Trastuzumab and Pertuzumab
Hannah Dzimitrowicz, Michael Berger, Craig Vargo, Annette Hood, Osama Abdelghany, Akshara Singareeka Raghavendra, Debu Tripathy, Vicente Valero, Christos Hatzis, Lajos Pusztai⇑ and Rashmi Murthy
+ Author Affiliations

Hannah Dzimitrowicz, Annette Hood, Osama Abdelghany, Christos Hatzis, and Lajos Pusztai, Yale University School of Medicine, New Haven, CT; Michael Berger and Craig Vargo, The James Cancer Hospital and Solove Research Institute at The Ohio State University, Columbus, OH; and Akshara Singareeka Raghavendra, Debu Tripathy, Vicente Valero, and Rashmi Murthy, MD Anderson Cancer Center, Houston, TX.
Corresponding author: Lajos Pusztai, MD, Yale University School of Medicine, 333 Cedar St, PO Box 208032, New Haven, CT 05620; e-mail: lajos.pusztai@yale.edu.
Abstract

Purpose Ado-trastuzumab emtansine (T-DM1) is currently approved for treatment in patients with human epidermal growth factor receptor 2 (HER2)–positive, metastatic breast cancer (MBC) who previously received trastuzumab and a taxane. However, there are no data on the activity of T-DM1 in patients who received prior pertuzumab, which is now included as standard first-line therapy. The goal of this study was to assess the efficacy of T-DM1 in routine clinical practice in a contemporary patient population that received both prior trastuzumab and pertuzumab.

Patients and Methods We identified all patients with HER2-positive MBC who received T-DM1 after trastuzumab and pertuzumab between March 1, 2013, and July 15, 2015, via electronic pharmacy records and departmental databases at three institutions: MD Anderson Cancer Center, Smilow Cancer Hospital at Yale, and The James Cancer Hospital at the Ohio State University. We reviewed medical records of each case to confirm treatment sequencing and outcome.

Results Of patients, 82 were identified and 78 were available for outcome analysis; 32% received T-DM1 as first- and second-line line therapy, and 48% received it as fourth-line treatment or later. Rate of prolonged duration on therapy, defined as duration on therapy ≥ 6 months, was 30.8% (95% CI, 20.6% to 41.1%), and tumor response rate was 17.9% (95% CI, 9.4% to 26.4%). Median duration on therapy was 4.0 months (95% CI, 2.7 to 5.1; range, 0 to 22.5 months). T-DM1 was discontinued for disease progression in 84% of patients and for toxicity in 10%.

Conclusion Tumor response rates were lower than in prior reports of trastuzumab-resistant, HER2-positive MBC, but one third of patients received therapy with T-DM1 for ≥ 6 months, which suggests a clinically relevant benefit in patients who received prior pertuzumab.

Footnotes


http://jco.ascopubs.org/content/34/29/3492
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Old 10-24-2016, 02:53 PM   #2
phil
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Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

I am already a big fan of t dm-1 ( kadcyla) as it was the drug that finally worked for my wife , after many chemo / herceptin combos (7 or 8 ? ) that did not. after 4 yrs of steady progression on other chemos, 2006 - 2009 , we got t dm-1 in expanded access starting in nov. 2010. her cancer was gone by oct., 2011 , even after reducing dose at dose 8 to 3.0. had been ned since. stopping all tx. in 2014. we never got pertuzumab as it was not approved until 2012 , and then only for earlier stage disease .
i think in the future t dm-1 will be deployed earlier , esp. for those like my lorraine who are strongly overexpressing her2 only ( no other hormone factors) , metastatic at dx. she was a 6 on the FISH scale. t dm-1 and pert. together for pts like her. avoiding the nastier hair loss, mouth sore chemos like taxotere.
interestingly in the editorial by dr. vogel. not sure if it's the same dr., but there was a dr. vogel writing for oncology news , an on line journal , who was a major skeptic of t dm-1 during the 3 yrs that the FDA denied early approval. i remember that dr. vogel as he was one of many in those yrs , who had no direct work with t dm-1 but felt free to air ignorant opinions. saying the emilia study was flawed , and that " if I had t dm-1, I would not give it to my pt.s ". now this dr. vogel says t dm-1 is a " beautifully designed antibody drug conjugate ' ... yes it is , and that was clear to those lucky few to get a shot at it back in 2009 - 2013. Now my wife and I work for compassionate use / drug approval reform to give more stage iv.'s a chance
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Old 10-24-2016, 02:59 PM   #3
phil
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Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

I hope they follow the trial results comparing t dm-1 / pert. vs. pert with herc / taxanes further out to track longer term survival outcomes for stage ivs. my sense is that tdm-1 , with it's targeted chemo homing in directly on mutated her2 cells, will outperform whole body , diffused chemos like taxotere , capecitabine , etc.
pert. is a genetic, not a chemo, and has to be paired with chemos to get full effect on refractory metastatic her2 disease.
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Old 10-26-2016, 04:53 AM   #4
TiffanyS
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Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

My doctor wanted to give me TDM1 after we found out that I had a local recurrence and that the cancer had spread to my lungs/chest, however, it is not yet covered by OHIP in Ontario, so my doctor had to get funding from Cancer Care Ontario. They agreed to fund it, however, they told me doctor I had to take Perjeta first, as it is covered. If the Perjeta doesn’t work, I will then start taking TDM1. I’ve heard good things about both drugs though, and I hope that the Perjeta works for me, for at least a few years. It’s good to know that I have TDM 1 as a back-up though, in case the Perjeta doesn’t work.

­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.

01/16 – Meet surgeon and go for third mammogram, ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer)

02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. Also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).

04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scare line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – Take first CEA blood test to determine Tumour markers. Asked for PET scan, but am told I don’t qualify.
10/16 – Get results of CEA blood test, and it is normal (my results were 2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me!
10/16 – Brain MRI – NED!
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!


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Old 11-01-2016, 05:20 AM   #5
sarah
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Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

Phil and Lorraine, great that you and your wife are fighting for its use and happy to hear it worked so well for your wife. thank you for your good work which helps us all.
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Old 11-01-2016, 07:39 AM   #6
schoonder
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Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

More work is ongoing to improve on t-dm1 based therapy. Following is an excerpt from a recently published world patent application:

"[159] As can be seen with reference to Figure 7, percent survival was dramatically higher when the agonist antibody (anti-CD137) was included, as compared with when an anti-tumor antibody (specifically trastuzumab or T-DM1 ) was utilized alone. Improved survival rates were observed for both trastuzumab and T-DM1 when agonist antibody was included. Moreover, Figure 6 documents the surprising finding that the improvement in percent survival achieved when anti- CD137 agonist therapy is added to T-DM1 therapy is dramatically more significant than that observed when anti-CD137 agonist therapy is added to trastuzumab therapy, notwithstanding that T-DM1 and trastuzumab target the same tumor antigen (HER2) and, moreover that T-DM1 includes the identical trastuzumab antibody, differing from trastuzumab in that the antibody is conjugated with DM1."

Hopefully Roche will apply this new methodology of treatment in a new clinical trial to translate these dramatical improvements into real life options.

https://worldwide.espacenet.com/publ...&locale=en_EP#
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Old 11-01-2016, 01:02 PM   #7
phil
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Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

what are these other agents besides t dm-1 ? " anti cd347 " , etc. in laymans' terms . immuno therapies ?
the paper keps talking about diferneces in effectiveness between her and t dm-1 . t dm-1 has a chemo, herc is no ta chemo. same with perjeta . not a chemo. that is why I advise stage iv her2 pts who are on herc or herc/ perjeta, who have previously to pert. progressed on herc with taxanes or other tx.'s to still get scanned very regularly, and get blood markers very regularly. perjeta and herc. are not chemos. I have seen some pts do very well on herc/ perj for 2 yrs or so then have the cancer come back . the sooner caught , the potentially smaller target for t dm-1 to hopefully kill.
I wish t dm-1 was around to be used on my wife's one lone liver tumor back in 06 - but it was just in very early phase I testing. we did benefit from an aggressive doc who kept cancer around liver until t dm-1 came along. I feel t dm-1 will be used in future for those w/ strong her2 only overexpression like Lorraine . right at the beginning of stage iv spread or prophylactically , before potential spread.
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Old 11-11-2016, 07:02 AM   #8
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Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

Still think shorter 9 week of Herceptin effective as in the Fin. Trail.
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Old 01-20-2017, 06:00 PM   #9
Mtngrl
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Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

I just read this thread, even though it's been up awhile.

I have been on Kadcyla twice. It's done a pretty good job keeping me alive, but for me it was not the "home run" that some have experienced. However, I don't think I've had metastases pop up in any new places since I've been on it. That's not certain, but it's a happy thought so I'll hang onto it.

Kadcyla doesn't touch my one bone met--in fact it got significantly worse on the last scan. I've also had progression there while on just Herceptin and Perjeta. So I think maybe the bone met is not HER-2 positive. That would be a reason, Phil, to use an old-school chemo. We'll see what my next scan shows.

I suspect some of the uptake in my lungs on the last scan was inflammation other than cancer--bacterial infection or pneumonitis from the radiation treatment. But I also think all the treatments I'm on at the moment may all be doing their part to make me healthier--less coughing, less trouble breathing, even less GERD. Also, of course, there's the time factor. I am healing and I will continue to heal.

From what people post here and what I read elsewhere, it seems there are multiple subsets of types of breast cancer. Maybe the 30% in this study who were on Kadcyla 6 months or longer had something in common.
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Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 01-23-2017, 06:03 AM   #10
TiffanyS
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Posts: 459
Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

My doctor has a high opinion of TDM-1. This is the drug she originally wanted to give me, but, I have to take Perjeta first. If, however, Perjeta doesn’t work for me, she will be transferring me to the TDM-1. I wish I had been given TDM-1 first though, as the side-effects seem to be less substantial because the chemo is tethered to the Herceptin. Also, emtansine, the chemo tethered to the Herceptin, is a very toxic chemo, which has never been given to people before because it’s too toxic. I’m hoping because this chemo is so toxic, that it will be successful at killing the cancer. Right now the Perjeta seems to be working for me, but, if that changes, I’m glad I have this drug as a back-up.


¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar. I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
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Old 01-23-2017, 05:43 PM   #11
phil
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Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

my guess is the 30 % are straight her2, strongly overexpressing her2 . like lorraine - a 6 on FISH scale. i think the 30 % could be improved by adding perjeta. and tucatinib , margetuximab whenever the slow trial system gets them approved . 2 more yrs ? ugh , what a lousy system .
mtn girl - could that stubborn bone met be radiated ?
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Old 01-24-2017, 05:36 AM   #12
TiffanyS
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Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

Phil, what is the FISH scale? I’ve never heard of that before?


¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar. I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
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Old 01-24-2017, 07:31 AM   #13
phil
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Join Date: Nov 2010
Posts: 393
Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

FISH is a measure of how strongly the cancer cells overexpress the her2 gene. you would have had this or some other test for her2 strength at initial diagnosis. ask your doc how strong you her2 overexpression is. the FISH scale is 1- 10 , with anything over 3 indicating trying kadcyla. so a 6 is plenty strong enough . the her2 cancer is very aggressive , but the flip side of that is it seems to be easier to find tx.'s that could kill it. starting with Herceptin in the late 80's. no her23 targeted drug is a 100 % killer yet , but it is easier to target her2 than triple neg. / triple pos. that is changing ( too slowly in this 20th century testing system ) as we speak . I know a tdm-1 ( kad. ) - like, antibody drug conjugate is showing promise with triple neg. sacituzumab/govetican . and drugs like pembro ( keytruda) are being tested with kad. in trials for er + .
So - a normal breast tissue cell has about 20,000 her2 cells on exterior. the mutant cancer cells have as many 2 million her2 gene receptors ! my theory is the higher the overexpression of her2 only - the better target for Herceptin to bring the emtansine chemo to those cells. more chemo - more mutant cell death !
also Mtngrl - I know that infections can distort testing. Lorraine had sepsis from stents in her kidney , bile duct prior to t dm-1. they did chest cts and her lungs had spots every where ! the er doc scared the crap out of us " cancer or emboli " but our onc came in and said " I don't believe it " . she was right . sepsis cleared and spots disappeared .
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Old 01-24-2017, 07:39 AM   #14
TiffanyS
Senior Member
 
Join Date: Sep 2016
Posts: 459
Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

Thanks Phil. I’ll have to ask my doctor how strong my HER2 over expression is. I’m sure it’s pretty high though, as my doctor initially wanted me to take TDM-1, however, Cancer Care Ontario wouldn’t pay for it until I tried Perjeta. So, for now I’m taking Perjeta/Herceptin/Taxol, and, based on my last CT scan, it seems to be working. That being said, I would have preferred to take TDM-1 first, but what can you do.

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12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar. I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
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