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I had some progression on Eribulin & Herceptin, including a partially collapsed right lung. It doesn't hurt and my O2 levels are OK. But still. . . . I would prefer to get the detectable cancer cleared.

I had Foundation One testing, and it showed the same MYK amplification as my Guardant 360 "liquid biopsy" showed. This amplification appears in a number of cancers that run in my family. There are as yet no drugs that target it, but one is in Phase 1 trials at the hospital where I'm being treated.

It's been nice to get a little break from chemo. I have eyebrows! The neuropathy (numbness in fingers and toes, but no pain) is less severe. My hair is filling in.

I'm not that excited about being in a Phase 1 study. So I was offered H&P plus either taxotere or navelbine. It's kind of a tossup, though Abraxane didn't do such a hot job on my lung mets, which are the main issue right now, so I opted for navelbine.

I will get a scan before I start. I've decided PET scans are too "noisy." They pick up any inflammation, then the radiologist calls it cancer progression. On the last scan they did that with a spot on my jaw, even though they also said the CT didn't show a lesion (and the uptake wasn't very intense.) It turned out to be a dental issue. My dentist found a cracked & infected tooth, pulled it, and gave me antibiotics. Problem solved--so much for cancer progression.

I'll get a CT with a bone scan on May 8, and start the new treatment May 10. It will be good to have a baseline for comparison.

If anyone wants to try to talk me into the MYK trial, be my guest.

I wouldn't want to try, Amy. Good luck with the new plan!

Well, here goes. MYK is determined to be a devil for you and there is no approved drug out there. Navelbine will always still be there for you as is H & P. But this trial won't. Sign up. You can always change your mind. Is the trial drug being given with anything else or is it just given alone? How long in between scans so you can ditch if there is the slightest progression? It might be a chance that won't come around again. Just thinking out loud.

Dear Becky,

Thank you so much for raising those points. And it came at a great time.

The molecular tumor board thinks they see evidence that I'm developing some resistance to Herceptin, and recommend I go on a tyrosine kynase inhibitor which, in the world of approved drugs, means Tykerb. The suggestion is that I do Herceptin, Tykerb and Xeloda. I haven't had that exact trio, but I have had all those drugs.

And they will all still be there, as you so wisely pointed out. Maybe I will give the Phase 1 a whirl.

Amy

Amy, I have no idea what I would do in your position. Phase 1 trial: it's scary leaning on the untried but at one time all of the drugs we rely on now where Phase 1 trials. It could be your miracle. I have no doubt that you'll be closely monitored and can drop out at any sign of progression.

I don't envy your position, not one bit but I know that whatever you choose, you will have put a great deal of consideration into it, making it the best choice for you.

You were walking around with a partially collapsed lung and infected tooth!

I don't have any educated advice, I'd probably stick with onc plan, but I tend to be a by the book person. I have not read of that combination you would be on, keep us updated. Are you aware of any early reports of side effects of folks on phase 1 study?

Good question, Kat. I'm sure they'll tell me if I go down that road.

Everything out here in "outlier" land is unknown. If I'm going to do a Phase 1 it would be best to do it while I'm relatively healthy.

It'll be a couple weeks before I need to decide.

Amy

This is a hard decision to make, and only one that you can make Amy. I agree with Becky though. I would sign up for the trail, and, if it isn’t going well for you, you can always go back to Herceptin/Perjeta and chemo. It’s up to you though. Keep us posted regarding what you decide to do.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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, and a pulled diaphragm, which is what’s causing my back pain. I need to see a chiropractor physio for chest therapy.
05/17 – Full body CT scan scheduled to see if I’m still “stable”.
05/17 – Bye bye Herceptin/Perjeta/Taxol, hello T-DM1

Amy;

Lots of questions for you to find out aka Becky's comments. I wish you all the very best with this very difficult decision. Will be thinking of you.

Cathy

Amy-please post the link to the MYK trial, I'd like to read about it. Becky raises some very good points as do you with your mention of being "healthy" enough for a phase 1. I cannot believe how nonchalant you sound on the partial lung collapse. I feel like I'd be freaking out!! Outliers, let's keep outlying. Flori

Amy -

I threw my hat in the ring for a brand new trial and look where I ended up. I don't think my case involved a TK problem, but it was sure that adriamycin did not touch my cancer, so something else was the demon driving it. They did not yet have the topo 2 research to know which cancers were better treated with or without an anthecycline.

Maybe giving Herceptin a rest is good timing. May you make your decision in grace and peace.

I can't actually find the link for the MYK trial. I searched for it on the BCT site. I'll update when I know more.

I was nonchalant about the collapsed lung because it doesn't hurt and my O2 levels are OK. Also I haven't gotten an infection from it. And I have had scans in the past that noted some collapse. My most recent scan showed "some" pleural effusion, but not enough to need draining. I do want to get my lungs fixed, though. I'm not nonchalant about that!

I have been having trouble connecting with the Phase I people. So for now I think I'll do Tykerb and Navelbine, starting Wednesday. I'm pretty sure I need some sort of HER2-targeted therapy plus some sort of chemo, and that combo meets those requirements.

I learned that neratinib access is being expanded for those who don't qualify for the clinical trial. Having had tykerb before disqualifies me. Until my bone met, which doesn't seem to be HER2+, is eradicated I don't want to attempt neratinib monotherapy.

So I can't post a link to the MYK trial, but here's one to the neratinib story: http://markets.on.nytimes.com/resear...ymbol=44478224

Amy

Thanks for the update, sounds like a wise choice.

As for neratinib, unfortunately does not look good https://www.thestreet.com/story/1412...g-stories.html

Update: The tumor board looked at the Foundation One report and saw things that might indicate I'm becoming resistant to HER2 antibodies. They said I should do a tyrosine kynase inhibitor instead of H&P. There are a couple of new tyrosine kynase inhibitors in development, but in the land of approved drugs there's only Tykerb. I wanted Herceptin, Tykerb, and a chemo drug (such as Navelbine). My oncologist says there's no study supporting that combination; I could have Tykerb and Navelbine or Herceptin, Tykerb, and Xeloda. I picked the former, because Xeloda was not super-effective for me.

I had a CT scan and bone scan 5/8, and learned 5/10 that everything's pretty stable. I've been getting just Herceptin and Perjeta since March. So apparently that is a decent "maintenance treatment" for me, despite the tumor board's concerns. Good to know.

I thought I'd start the new regimen on 5/10 but it didn't have insurance approval at that time, so I got another 3-week dose of H&P. While I was there I asked the chemo nurse whether she'd be willing to give Navelbine (a vesicant) without a port, and she said she'd rather not. If it leaks into your skin, it can do a lot of damage.

Alrighty, then. Chest port it is. I will get it placed on 5/31, then have my first Navelbine infusion the same day. Tykerb is a pill.

I'm actually quite pleased about the scan. HER2+ cancer is normally aggressive, but mine's kind of lazy, and I'm delighted.

Here's the back story on the Navelbine. Years ago, a different oncologist prescribed it, and the RN countermanded it. She told me the same thing as the treatment nurse I talked to two days ago. When my current oncologist suggested Navelbine I remembered what the first nurse had said, and I asked her if I needed to get a port. She said she didn't think so.

I guess "it takes a village" to get cancer treatment right. Pay attention, everybody, and be careful out there.

http://chemocare.com/chemotherapy/si...reactions.aspx

Amy,

It does take a village, and it seems like you have one. At least it appears that you have options, and you're now aware of a phase 1 trial based on your genomic testing.

Back in a January I had a Guardant Health test, not having had a biopsy since my first lung met in 2007. It's amazing that the variation has appeared in others in your family. We never know the significance of these "coincidences."

Joan

Thank you, Joan. Good food for thought.

Hey, all, I've been misspelling the amplification. It's MYC and not MYK. There are various kinds of MYC. They are all oncoproteins.

In my Foundation One report, they tell of two MYC trials being done in Colorado. One is NCT02431260 and the other is NCT02419417.

Amy

The response by the tumor board to your FMI results is fascinating! Which mutations are suggestive of resistance to HER2 therapies, and why would an anti-HER2 TKI (e.g., Tykerb) be better equipped to overcome that resistance than a monoclonal antibody? I've never heard anything quite like this and am really curious.

Thank you for sharing! I also had an FMI test recently and am curious as to whether any of this would apply to me.

Best,
Lauren

Lauren,

Here's what my oncologist said in an email to me:

"The discussion at the Molecular Tumor Board on Friday suggests that perhaps your tumor has become resistant to HER2 targeted antibodies as evidenced by an ERBB2 (HER2) rearrangement noted in the report. It is noted as a variant of uncertain significance however given the increased copy number of the HER2 signal and the fusion protein created there is concern that this may be leading to resistance to such therapy.

As such it was suggested NOT TO continue on dual HER2 antibody therapy but rather a HER2 tyrosine kinase such as Lapatinib. How did you tolerate this before and would you be willing to try this again?"

Drugs with the "mab" suffix are monoclonal antibodies, so they help the person's immune system kill the unwanted cells. Drugs that have a "nib" suffix block growth of the targeted protein. I found this explanation online: "Drugs that end in NIB act within the cell blocking the messenger activity of the tyrosine kinase which is part of the signalling process within the cell. When this is blocked the cells can't divide and grow."

Also, the "ase" suffix indicates that something is an enzyme. So a TKI (tyrosine kynase inhibitor) blocks an enzyme that is part of the HER2-neu cell growth process.

I don't really understand my doctor's explanation of what they saw in the report, but I trust that the tumor board people know what they're doing. I'll be monitored pretty frequently and we'll see how it goes.

Amy

Interesting! It's cool that your doctor is using genetic sequencing to guide your treatment - I've been struggling with the actionability question (I am totally open to treating off-label, and it's hard to get support for that in my hospital). I hope the Tykerb combo works well for you!

I dont know what the MYK trial is but I know a little about Neratinib. It acts like Tykerb. It is used when the cancer cells become resistant to Tykerb. There is a single amino- acid change in the drug active site (I forgot what changes to what) and the Tykerb molecule cant hook imto the active site but Neratanib can. The dose of Neratinib is 240mg daily. Like Tykerb, Neratinib causes diarrhea and you have to watch heart function etc. Ill look up the two other drugs tomorrow. Hope this helps

Paul