Surprise from my biopsy
 

Hello, friends.

My oncologist recommended that I get a lung biopsy, since cancer mutates and I hadn't had a biopsy in about four years. So I got that done on March 23.

To my relief, the lung mets (or at least the one they sampled) are still strongly HER2 positive. To my surprise, it's weakly PR positive. The original tumor was 10% ER positive, PR negative.

I'm sure my oncologist will fill me in on any implications this might have for treatment. In the meantime, feel free to offer your thoughts.

Re: Surprise from my biopsy
 

Hi Amy,

Well, I'm thinking it is good news, right? Remaining strongly HER2 positive should be a good thing. Reading your signature, it seems that it has been a while since you were on just Herceptin & Perjeta. Hopefully switching back to this treatment will keep you stable.

It seems there is limited information regarding how to treat PR receptive cancers. I recall previous discussions on this board regarding this subject and others were also unsure about how this status was specifically targeted. Wondering how your oncologist will address this.

I think of you often and hope you find treatment that gets your cancer stable without having a lot of side effects. For me, I found Herceptin & Perjeta to have manageable side effects. Hoping the same is true for you.

Take care,
Brenda

Re: Surprise from my biopsy
 

Have you ever been on an aromatase inhibitor? Or maybe adding Faslodex? You never know if the synergy will do something for you.

Re: Surprise from my biopsy
 

Also, have you explored trying Navelbine?

Re: Surprise from my biopsy
 

I was on an AI (Arimidex) with Herceptin when my one bone met developed and I had some other progression.

I haven't had any of the vinca drugs. It's my understanding that I'd have to get a port for that, since it's too risky to administer them by IV. I'm certainly open to that, and to trying some other hormone treatment.

They're studying Tucatinib at the University of Colorado Hospital, where I am treated. It is an improved tyrosine kynase inhibitor (like Tykerb, which worked fairly well for me at first but didn't last), said to overcome the "cross talk" between hormone-receptor positive cells and HER2. I didn't pay much attention to it before, but now it looks pretty interesting. https://www.sciencedaily.com/release...0111091449.htm

Amy

Re: Surprise from my biopsy
 

Amy;

I'm so glad you have another target to treat now. I worry sometimes that we Her2+ breast cancer patients focus far more on the her2 and not on treatment to fight the hormone aspect of our disease. So glad you do!! All the best.

Cathy

Re: Surprise from my biopsy
 

Hi Amy,
My original tumor was also slightly PR+. Trials are showing that Kadcyla and Neratinib are a really good combination. Hopefully, Neratinib will be approved by mid 2017. I am getting it on their compassionate use program, and it is working wonderfully as a mono therapy.
All my markers are now in the normal range, except for CEA, which has gone from 978 to 63.5 over a period of 3 months.
Please keep us updated,
Fern

Re: Surprise from my biopsy
 

Thanks, Fern. That's good information.

Unless my bone met is hormone receptor positive I won't be able to be on only targeted treatments. It acts like it's triple negative, or at least not HER2 positive. Every time I've been on Kadcyla or just Herceptin and Perjeta the bone met has gotten more active. On my most recent scan it was somewhat improved--one of the few bright spots. I was on Eribulin and Herceptin up until then. Another possibility is to get radiation treatment on that bone lesion. That might knock it out.

I'm hoping the Foundation One testing will give us some new ideas. I also realize I haven't run through the whole breast cancer hit parade. There are at least three classes of drugs I haven't had yet. In one sense I'm "heavily pretreated," but on closer inspection, I've repeated some things. And I've never had progression while on Abraxane, and had some really good results on it (including complete--and apparently permanent--resolution of my liver mets). It's hard on me, though.

Re: Surprise from my biopsy
 

I agree with Becky that for the hormonal aspect, Faslodex would be a good option.

Re: Surprise from my biopsy
 

That’s great Amy. I’m glad you are still HER2 positive, and are able to take drugs like Perjeta and Herceptin. I hope these drugs keep you stable. I’ve asked for a lung biopsy a few times myself, but my oncologist keeps telling me it’s not necessary. When I mentioned that my cancer may not be HER2 positive anymore, they told me that it was, and that the meds they are giving me are working and keeping me stable. I guess I just have to trust them.

I got the results of my Foundation One results a few weeks ago, and the results didn’t change anything in regard to my treatment plan. My doctor said that the information may come in useful down the road, when/if I need to enter a trial. Until then, the information was not helpful and did not change my treatment plan. I hope your results are more helpful to you than mine were.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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). I was unable to get a full dose of Docetaxal after my first treatment due to liver enzymes being high.
04/16 – Have port put in.
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 chest wall. 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 TDM-1 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 Second CA-15-30 blood 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.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
03/17 – Third CEA blood test and CA-15-30 blood test – Both normal at 2.5 and 25
03/17 – CT Chest scan to see if there’s improvement to chest and lungs – results are mixed. The good news is, lymph nodes are stable, there is improvement of previous lung changes due to radiation, and the cancer has not spread to my bones, spine or liver, etc. The bad news is that while some lung nodules remained stable, others increased by 1-2 mm and new ones have shown up. All of them were less than 1cm.
03/17 – Received my genetic test results from Foundation One. It found 11 genomic alterations, 3 therapies associated with potential clinical benefit, and 13 clinical trials from which I might benefit.
03/17 – Second brain MRI –NED!
03/17 – Ultrasound done to determine size of “pimples” on my chest wall. They will follow up with a second Ultrasound in three months, to see if they are growing.
04/17 – Was told that I have developed atelectasis due to shortness of breath, which is what’s causing my back pain.
05/17 – Full body CT scan scheduled to see if I’m still “stable”.

Re: Surprise from my biopsy
 

Tiffany--

I heard somewhere that HER2 status doesn't usually change over time. But since it had been four years since I had a biopsy, my doctor wanted to be sure.

"Stable" is just as good as NED, in my opinion. Better, actually. There's less emotional turmoil for me changing from "stable" to "progression" than going from NED to progression.

I think NED is a bit of a mirage. In trials, they use "progression free survival" as a surrogate for "overall survival," but it's not really a reliable indicator. I can hack having detectable cancer in my body if it's relatively well behaved and isn't getting in my way too much. In fact, I can hack it even with some impairment and reduced quality of life. As they say, "It beats the alternative."

Amy

Re: Surprise from my biopsy
 

Tiffany - same comment from my Oncologist when I asked for Foundation One report on Thursday. Requested it anyway!
( Drug trial Company do test but don't give results to Oncologist unless it is requested)

Re: Surprise from my biopsy
 

I’m sure my doctors are right, and that I’m still HER2 positive. I hope they are right, so that I can still take drugs like Perjeta, Herceptin and T-DM1.

I’m happy with being stable, and I hope my next CT scan shows that I haven’t progressed like my last one did. The lymph nodes in my chest were stable, but my lung mets were not. All I know is that I need a break from the Taxol, and plan on just taking Herceptin and Perjeta until I get my CT scan results in May. After that I’ll decide if I should continue with Herceptin and Perjeta, or move onto T-DM1. I just wish the Herceptin and Perjeta had worked for me for longer than this. I was hoping to get a year or two of stability on these drugs, but it’s only been seven months, and I’m already showing progression.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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). I was unable to get a full dose of Docetaxal after my first treatment due to liver enzymes being high.
04/16 – Have port put in.
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 chest wall. 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 TDM-1 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 Second CA-15-30 blood 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.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
03/17 – Third CEA blood test and CA-15-30 blood test – Both normal at 2.5 and 25
03/17 – CT Chest scan to see if there’s improvement to chest and lungs – results are mixed. The good news is, lymph nodes are stable, there is improvement of previous lung changes due to radiation, and the cancer has not spread to my bones, spine or liver, etc. The bad news is that while some lung nodules remained stable, others increased by 1-2 mm and new ones have shown up. All of them were less than 1cm.
03/17 – Received my genetic test results from Foundation One. It found 11 genomic alterations, 3 therapies associated with potential clinical benefit, and 13 clinical trials from which I might benefit.
03/17 – Second brain MRI –NED!
03/17 – Ultrasound done to determine size of “pimples” on my chest wall. They will follow up with a second Ultrasound in three months, to see if they are growing.
04/17 – Was told that I have developed atelectasis due to shortness of breath, which is what’s causing my back pain.
05/17 – Full body CT scan scheduled to see if I’m still “stable”.

Re: Surprise from my biopsy
 

Amy, I'm interested in anything you hear about targeting PR aspect of your cancer. When I was first reDx'd, I went to Dana Farber for a second opinion. They suggested to treat as triple + as there are no targeted therapies for PR. I was on AIs many months but the SEs were pretty miserable so I went off them. I have not had any progression <touch wood> on H&P alone. I'm moderately PR+ (50%) but ER- and there isn't a lot of data out there.

Re: Surprise from my biopsy
 

My onc doesn't think the PR factor is anything to get excited about. It's too weak.

Also there are no drugs for it. They use the same stuff as for ER+.

Onward and upward. . . .