Mom recently diagnosed Stage IV MBC - Treatment Opinions

MichyMom

Hi all,

I don't have the words to tell everyone on here how special this board has been in educating my family about treatments, staying positive and looking to the my new future living with a mother who has cancer. I'm sure it's been said before but coming to terms with this has been very strange. I selfishly never thought it will affect my family, until it does. The entire family is still in a strange state of coming to terms with this. The inspiration and guidance I've gained from reading the topics have been invaluable. I hope everyone here, friends, family and all BC survivors alike know how special you all are.

In terms of my mother, she was Dx on 11/28/17. She is ER-,PR-, Her2 +. She is 63 post menopausal.. Does this make the ER/PR - less of an issue due to post menopausal status? CEA was 12.4 and CA 27.29 was 239 at Dx before any treatment. She has mets on liver largest being 1cm and two small met on her lung 1cm. BC found only in right breast 4cm. Brain MRI came back negative (This was a win). Not in bones (another win). MO said something like marginal in lymph node, can't remember which ones... Still not quite sure what that means? I believe the MO motioned/mentioned the lymph node area near the stomach, but no talk of specific tumors in the lymph nodes if this makes sense.

Mom before Dx had generally no symptoms except a small lasting cough I think is in some way due to the small met in her lung. She has done very well on her first week of treatment. Only complains of heartburn but prilosec has stopped that.. Probably the Herceptin? Very energetic a week later after first Tx. Assuming next infusion of just Taxol may make her more fatigued..

Treatment commence last week 12/21/2017 with Taxol (MO said easier on the SE than Taxotere), Herceptin and Perjeta. She is doing 52 weeks of treatment total (H&P every 3 weeks and T every week for a year then H&P indef.). Seems to be neoadjuvant angle... I wanted to know from people with way more expertise in this area what they feel about her CEA and CA 27.29 pre treatment and whether you agree with the prescribed treatment from the MO. Is this a normal route? Mom is in Jersey and has access to Sloan Kettering if she wants. She is at Valley Hospital/Mount Sinai now at the Luckow Pavilion for Cancer. What a nice state of the art facility BTW and they have the GammaKnife on site.

Anyone have an idea why TCHP is not being given or AC-THP? I have heard that the A can make some experience heart issues.. Maybe H and A together is too much on the heart? I am wondering peoples opinion on after the year of chemo, would it be prudent to have a double mastectomy done in order to cut the chance of the left breast developing a tumor etc..?

I am open to any insight! Sorry if I'm bouncing questions around... Thank you all so much. This site has been amazing. I will be donating to help fund it!

ElaineTherese

Hi!

Yes, H and A are never given at the same time -- too much potential stress on the heart. Taxol is supposed to be gentler than Taxotere, and is more likely to be used on a weekly basis. Stage IV cancer is an art and not a science, though there are guidelines for First Line Treatment, Second Line Treatment, etc. I would suggest that you get Bestbird's guide to metastatic breast cancer, and that you visit the Liver Mets and other Stage IV threads that address weekly Taxol and Herceptin/Perjeta. ((Hugs))

Here's how to get Bestbird's guide:

https://community.breastcancer.org/forum/8/topics/831507?page=3#idx_74

MichyMom

Elaine,

Thank you so much! I emailed for the booklet. Thank you for the information!

Best,

Darren

throughthedeepwaters

I had Stage IV Her2/neu + mbc. Mets to lymph, liver, bone.  Diagnosed 12/13.  Txt started 8/14- did a lot of alternative things which DID NOT WORK!  Did weekly, metronomic chemo for a year and half, along with immune therapy and naturopathic help.  Got cancer free 12/15- then it metastasized to the brain. Did Gamma Knife and 12 weeks of chemo.  A year later got a few more tumors in the brain and did Cyber Knife.  Now cancer free.  Enjoying life while I can!!!  Praise God!

Taxol is an anti-angiogenesis.  Not able to kill the cancer all by itself.  I went to Dr. Ben Chue at Lifespring (where many people have flown weekly for txt) and he always used Taxol as the baseline for the above purpose, and added one or two more chemos that did the actual killing.  He did Herceptin and Perjeta along side.  Very effective!  

With mets.... not sure about doing surgery at all.  Staying on Herceptin and Perjeta for life is my plan.  Have seen a gal at Stage II do the mastectomy and is doing fine.  

I am doing well.  Heart is struggling so I will see a cardiologist Monday.  Herceptin is probably the culprit. But the options are a struggling heart and live or healthy heart and get cancer back!  

I pray for your mom and for wisdom and healing.  

ShetlandPony

Hello, MichyMom. You are asking good questions and I would be doing the same, wanting to make sure treatment was correct. I think it is. Another resource for understanding stage iv treatment is the National Comprehensive Cancer Network (NCCN) guidelines. I happen to have the 2014 mbc patient's info handy, and for ER- PR- Her2+ mbc it says, "Preferred first-line treatment for HER2-positive disease is trastuzumab [Herceptin] and pertuzumab [Perjeta] with paclitaxel [Taxol] or docetaxel [Abraxane]." So your mom's treatment is entirely in line with the standard of care. Stage iv treatment is a marathon, not a sprint, so they don't throw everything at you at once like they might do for early stage when there is a limited time of treatment. This combo has a very good chance of working very well for her. Her tumor being hormone receptor negative just means the doctors will not employ the anti-estrogen drugs. The absolute number of her CA 27.29 and CEA do not matter so much as any trend up or down, if it turns out her markers are reliable. The doctors will correlate them with her scans and symptoms during treatment to judge whether these numbers are helpful in her case. Surgery for stage iv is a debated question and must be individualized. (It seems that most often surgery is not recommended for stage iv, but there are certainly exceptions.) Your mom might want to ask her onc for more details about his/her recommendation, and if your mom can get a second opinion at MSK, go for it. Either you get new ideas, or confirm the plan for peace of mind.

Taxol is actually an antimicrotubule agent. "Microtubules are part of the cell's apparatus for dividing and replicating itself. Inhibition of these structures ultimately results in cell death." (Chemocare web site) The doctor can order the heartburn med to be included in your mom's "cocktail" on chemo day. Easy.

Your mom should ask for copies of everything and start a notebook of lab results, scan reports, etc.

Deepwaters, I am glad you are doing well now!

MichyMom

ShetlandPony

Thank you so much for the information! I will pass this along to her for reference. Everyone on this board has been so nice. I will be on here a lot and will be updating all on her Tx and will be around to ask more and more questions, as I learn more about BC.

Strength to all.

Darren

ShetlandPony

Darren (and Darren's Mom), we're all in this together.

MichyMom

Just wanted to post an update. After two infusions mom's CEA went from 13 to 12 and her CA27.29 went from 254 to 233. She feels well accept for some moments of the D. She just finished her first cycle and next markers are going to be looked at Feb. 1.

Darren

ShetlandPony

That's the right direction! I suppose she will have a scan after about three months?

MichyMom

Shetland,

Yes, in about 2 months I believe. Next marker eval is Feb 1.

Darren