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Topic: Verzinio Faslodex Leteozole not worki g

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jan 10, 2019 07:59PM

catwood wrote:

Just left my doctors office. Was told my markers are consistently going down but my scans tell a different story. No appreciable change to my bone scan but my CT scan shows two leasions in my lung, along with some addition lesions on various issues on my spine. One lesion on my hip disappeared but a new one cropped up.

My doc looks very confused and is at a loss. She’s a by the book gal and really doesn’t know where to go from here.

I’m taking Meda mentioned above. Dx in 2010. Still here and doing fine.

She asked me what I want to do now and not to be sarcastic I told her I thought that was her job to guide. She didn’t have any suggestions other than to put my on IV chemo and another scan in 3 mos. and continue with the therapy we are on.

My problem is I worked in medicine. Actually ex health professional and med student. I know it’s guessing all the way.

I nenes some direction from people that have walked in my shoes

I would love to hear your suggestions and failures if you can relate. I’m still in shock


Dx 5/14/2010, IDC, 3cm, Stage IIIA, Grade 3, 6/14 nodes, ER+/PR+, HER2-
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Jan 10, 2019 09:04PM - edited Jan 10, 2019 09:05PM by Tina2

I have not walked in your shoes, but I know enough to plead with you to get a second opinion!

Wishing you the best,

Tina

Stage I, 1985, modified radical mastectomy; Stage I, 1995, modified radical mastectomy;Stage IV, lung mets, ER+/PR+; treated with Faslodex since July, 2011 Dx Stage IV, mets, ER+/PR+
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Jan 10, 2019 09:11PM Leee wrote:

I was on Faslodex and Ibrance for 10 month with which cleared the nodes and breast but hadliver progression. I’ll start Taxol next week.

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Jan 10, 2019 09:23PM - edited Jan 10, 2019 09:28PM by Cure-ious

Catwood, Tina has it right, run for a second opinion!! Preferably at a major cancer center/university hospital and for sure by someone who specialized in breast cancers. And it would help for you to get more specific feedback if you give us your history of when you got the diagnosis of metastasis and if this is your firstline treatment? It seems that many on these boards try Halaven or Xeloda before moving to IV chemos, and there are many targeted drugs that can be tried before that, Moreover, there is some excellent stuff in clinical trials, and they will take exquisite care monitoring your cancer and give you a lot of info about how you are doing. For example, the cancer may have developed a PI3K mutation, in which case you would want to try Alpelisib with Faslodex or AA, or it could have switched to become Her2-positive or even triple negative- did they do a BIOPSY and sequencing?

For sure get a second opinion and maybe even a third one (if the second one differs from your current doctor's opinion) - this is a very consequential time, when changing to chemos. And of course you are in shock and panicking, but the extra month or so it takes to figure out the very next best step forward for you is time well-spent and can make a big difference in how you fare going forward.

PS Leee, same advice for you!! Everyone freaks out, but second opinions can have huge impact and doctors have no problems with you getting a second set of eyes to look at all the scans, etc

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Jan 12, 2019 03:05PM pajim wrote:

Your onc should be able to give you a list of options. And if you want you can add more.

The easy approach now would be Xeloda or A/A. That's where I went when Ibrance/Faslodex/Femara failed.

But please, please get another opinion.

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/27/2013 Femara (letrozole) Hormonal Therapy 4/22/2013 Faslodex (fulvestrant) Targeted Therapy 2/25/2016 Ibrance (palbociclib) Chemotherapy 6/19/2017 Xeloda (capecitabine) Targeted Therapy 8/15/2018 Verzenio Hormonal Therapy 8/15/2018 Faslodex (fulvestrant)
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Jan 12, 2019 05:32PM NouzayO wrote:

I would ask to get a biopsy and send it to Foundation One or one if the other genetic testing companies for ideas on clinical trials and other treatment opty.. you can also do a blood test for Foundation One .. some good options can come out of that but it’ll take at least a month maybe more so get on something else for now until you get the results.. I don’t know what else you’ve tried but there are other options before you go for IV chemo maybe Ibrance or Xeloda? I’m not a big fan of Afinitor based on others experiences but that’s also an o

Dx 9/15/2016, DCIS/IDC, Right, 1cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- (FISH) Hormonal Therapy 10/2/2016 Femara (letrozole) Targeted Therapy 10/15/2016 Ibrance (palbociclib) Chemotherapy 4/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 12/9/2017 Xeloda (capecitabine) Chemotherapy 2/15/2018 Doxil (doxorubicin) Targeted Therapy 5/13/2018 Verzenio Hormonal Therapy 5/15/2018 Faslodex (fulvestrant) Targeted Therapy 1/11/2019 Lynparza
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Jan 13, 2019 11:16AM catwood wrote:

To be fair I should tell everyone I’ve been on this journey for 8 years. I have taken almost every oral drug and did the common IV chemo and rads 8 years ago. The cancer is metastatic at this point.

We now have lesions she can biopsy and I’ve been talking with her about dna sequencing and the like since I am an innovator in my industry and look for this first but she doesn’t seem to move forward

Now she wants to go back to IV chemo with a drug called Gemzar. She had her PA call me Friday ar 6:00 to talk with me about it but I did not get to the phone quickly enough so I wait for tomorrow (Monday). I am disappointed the doctor did not call me herself and it almost sounded like this idea was something she thought of brand new after I left her office. The appointment I had with her was basically nothing more than her literally throwing her hands up in the air and said “I would suggest a second opinion”.

Tomorrow I am going to call the MD Cancer Center in Houston. We have one here in Phoenix and I want to find out if the one here in Phoenix is just as innovative is the one in Houston. If so, the decision becomes very easy and I get a second opinion right here in Phoenix at MD cancer center.

I am annoyed that firstly she didn’t discuss this with me in her office during the appointment even though she knew I was supposed to IV chemo, as the physician she should have still spoken with me about this is an option because apparently the physicians assistant left a message over the phone and said “this will work”.

Secondly I am annoyed that she didn’t call me herself but had her physicians assistant call that I saw once three years ago. You would think that this would be great news and she would want to impart that information to me personally and revel in the wonderfulness of the idea.

This is a great way to catharticly move through this. Thank you for your help.


Dx 5/14/2010, IDC, 3cm, Stage IIIA, Grade 3, 6/14 nodes, ER+/PR+, HER2-
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Jan 16, 2019 07:43PM - edited Jan 19, 2019 12:31PM by EV11

One thing you may want to consider is to stay on your current treatment and re-scan in 3 months--- people develop non-cancerous lung lesions that we happen to pick up on due to our high frequency of scans....you might also want to request that a radiologist reviews your most recent scans and actually compare them side-by-side to the scans from last time (and perhaps the time before)....sometimes variations in position, machines, radiologists' readings can make for inconsistencies that aren't really meaningful.


I had two small (sub-cm) lung lesions appear when I was on Ibrance-- they grew over three months, and we interpreted that as progression. I went off meds for 5 weeks to get into a trial, and because >4 weeks had elapsed from my last scans by the time the trial was ready for me I had to have another CT-- and the lesions were GONE...no trial, but also no progression....


I just share this to say that if your other indications (labs-- how's your alk phos value trending??) symptoms, etc are stable perhaps a bit of cautions watching and waiting might not be unreasonable...nor is a second opinion in the meanwhile!


Best of luck to you as you try to figure out a plan. It is so difficult when things are ambiguous...

Elizabeth

De novo stage 4 May 2015 ILC, pleomorphic, Luminal B. Mets to bone/marrow, ovaries, peritoneum, omentum and colon. Primary was ER+/PR+/HER2- but mets are ER+/PR-/HER2 equivocal; mutations detected: CDH1, TBX3, NTRK3, ALK, EGFR exon 20 insertion Dx 5/2015, ILC, Left, <1cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (FISH) Targeted Therapy 6/1/2015 Targeted Therapy 6/1/2015 Ibrance (palbociclib) Hormonal Therapy 6/1/2015 Femara (letrozole) Chemotherapy 9/7/2018 Xeloda (capecitabine)

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