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Topic: Many questions especially about differences in chemo for mets?

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Oct 10, 2017 08:33PM - edited Oct 16, 2017 02:08PM by ceci4555

ceci4555 wrote:

Hi, I'm new around here. I was diagnosed with stage 1C ductal carcinoma (oestrogen and progesterone positive, HER2 negative) in 2009. I was treated with chemotherapy which included doxorubicin, radiotherapy and 5 years of arimidex. I lived disease and symptoms free for around 6 or 7 years until I started having body pains which I assumed were due to arimidex, age and falls I've had had. It turns out on year 8 that they just discovered many bone mets in my spine, hip, femur etc which I assume have been there for longer.

Biopsy is not possible to check for changes in inmunohistochemical markers. I will have a PET scan done eventually but have to go abroad for it and will get CT scans to check for other organ mets. I have so many questions.

I was told by some doctors that not all mets are treated with chemotherapy, I wonder which are and which aaren't?

Assuming I had mets in other organs and needed chemo, what kind is usually given in these cases? Would I be getting the same treatment I got the first time?

Will I lose my hair again?

I know it's bad seen to talk about survival statistics, but what are they really? My doctor will always change the subject when I try to ask or says to wait for test results. I need to know what I'm facing or my anxiety will kill me before the cancer does. Assuming I had mets everywhere (only many bones have been confirmed so far but I suspect lung or liver mets), how long on average would I have to live? But most importantly what kind of treatment would I get aside from radiotherapy and zoledronic acid which have already been confirmed to me (I mean chemo-wise).

What has been your experience with second time chemo? Did you get the same side effects as the first time?

Is there anyone around here with multiple-organ mets that has survived more than 3 years? 5? Or is it a matter of weeks/months?

Also I don't know much about targetted and inmuno therapies or when they apply.

Thanks in advance for the help. I really thought I was gonna be a survivor, I was healthy for so long and now my world is falling apart and all during cancer month awareness

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Oct 10, 2017 11:22PM Meow13 wrote:

I can't speak for myself I am 6 years NED, however one of my coworkers dx with ilc had hip bone mets and she had radiation for treatment. Originally, her oncodx score was a 4. She had been taking tamoxifen for treatment.

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Oct 11, 2017 01:21AM jensgotthis wrote:

It's important to keep breathing. Come visit the Bone Mets Thread and you'll find a wonderful group of women living full lives with bone mets and some that have bone + other organ mets. Many hold chemo for down the road as the goal with stage 4 is to keep mets stable for as long as possible. A common first line therapy, depending on receptor type, is a targeted therapy like a Ibrancr along with a hormonal drug like letrozole. This is a new regime and it's giving many patients many more months and years. Don't dwell on the stats that are out there - they are old and don't seperate by receptor type or take into account new drugs. I have a dear friend living with bone mets and lung mets for 15 years. Take this one day at a time for right now. Come to the stage 4 threads and you'll find lots of info and support

Jennifer, 42, Los Angeles Dx 12/3/2015, IDC: Tubular, Left, 2cm, Stage IV, metastasized to bone, Grade 1, 0/12 nodes, ER+/PR+, HER2- Chemotherapy 1/4/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/1/2016 External: Bone Hormonal Therapy 5/23/2016 Surgery 5/25/2016 Lymph node removal: Left; Mastectomy: Left Targeted Therapy 9/14/2016 Ibrance (palbociclib) Hormonal Therapy 9/14/2016 Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy
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Oct 11, 2017 04:14AM ceci4555 wrote:

Thanks a lot for your answer, it gives me some hope. The issue with targeted therapy in this case is that we couldn't get a biopsy and the oncologist says hormonal and generic status may have changed but we can't know how or for sure so far.

I'm trying to take this one day at a time but I have severe anxiety and depression from the first cancer diagnosis and I'm losing my head. I'll keep coming to the forums. Thank you this means a lot.



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Oct 21, 2017 11:52AM proudtospin wrote:

i was treated for dcis with micro invasion, did all treatment and after 9 years reoccured with bone mets and tumor on my spine

My treatment has been initially affinitor , an oral chemo, it failed. Changed docs an now on taxol which is an infiusion chemo. 3 month scan showed improvement

You,want a reallly good onc, i am at a branch,of msk

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Oct 21, 2017 06:59PM - edited Oct 21, 2017 08:02PM by ceci4555

Proudtospin your story sounds a lot like mine, sorry to hear that. I'm glad you've seen improvement.

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Oct 22, 2017 11:32AM KBeee wrote:

Sorry you are dealing with this. I hope you have a plan in place doon

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Oct 22, 2017 12:39PM ceci4555 wrote:

Thanks Kbeee, it's been a hard ride.

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Oct 25, 2017 10:08PM flwr57 wrote:

Hi ceci4555,

I'm new here too but I might be able to answer your question about targeted therapy/AI vs chemo. I was all set to get Afinitor/Aromasin then my oncologist changed her mind and wanted me to start Taxol because she was concerned that the liver mets were progressing. She felt that the Taxol would produce a faster response. She felt that there would be a response in three weeks. She also said I would lose my hair in that time as well. She felt that I would be able to go on the Afinitor/Aromasin at a later time.

I found out all this last Wednesday and had my first infusion on Thursday. Talk about a roller coaster ride!

I know that everyone is different but this might be a question you could ask your oncologist. Hope this helps.

J

Oncotype DX 18 (12%) Dx 1/3/2014, IDC, Right, 2cm, Stage IIA, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 1/22/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/18/2014 Lumpectomy: Right Radiation Therapy 5/7/2014 Breast Hormonal Therapy 7/1/2014 Arimidex (anastrozole) Dx 8/25/2017, IDC, Stage IV, metastasized to bone/liver/lungs
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Oct 26, 2017 08:41AM Nilelady2016 wrote:

Hi

Am new here

Breast cancer mets to lungs

Lymphangitis carcinomatosa

Taking gemzar as chemo

Prognosis are not good as i read in the interne

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Oct 28, 2017 07:41AM ceci4555 wrote:

flwr57 Thanks for your answer, I'm sorry you're going through such sudden changes, I hope everything will go as well as possible for you.


Nilelady2016 I hope you beat the odds of your prognosis. It might not be as bad as the internet says considering new medication is being released all the way. Welcome and best wishes.

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