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Topic: Anyone else with Stage IV and in Remission?

Forum: Stage IV and 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 or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Oct 15, 2012 08:28AM

ThePowerOfPink wrote:

My last scans show that I am in complete remission.  My Oncologist said it is miraculous.  I was in the exam room with my Husband and Mother when we got the news.  We were all three dumbfounded. I look back now and I am a little embarrassed at our response.  We walked out and were in shock.  Happy Numb is how I would describe it. That was July 2012.

It took about a month to sink in and to begin changing my daily way of thinking.  The first feeling I was able to identify was guilt.  Why me?  I had made peace with making the absoulte most of every day and accepting that I would not be here with my family as long as I had planned and wanted to be.  But I was NOT giving up by any means and was fighting to be here as long as I could.

I was hoping for improvment to show on my scans with the new treatment I was on, but NEVER is a million years expected to hear that there were no signs of any active cancer in my liver, lungs or bones (it was in my bones from my skull to my knees) anymore.

It has been 3 months now and I was cruising along with the new plan. (I will continue my treatment as is and rescan in 6 months - My Oncologist doesn't want to change anything at this time.)  I had figured out how to live life on treatment with this new happy happy news and even managed to not think about reoccurrence. Believe it or not - ha ha  Then Friday I called to schedule my annual PAP since I am due in December for this.  The nurse called me back to confirm that I could schedule my appointment while on this chemo and not worry about it effecting the PAP test results.  The nurse left a very sweet voice mail about this and how they are there for me and that they would schedule an appointment in the morning so I would not have to be in the waiting are for a long time.  Then as she was hanging up the phone I heard her speaking with a coworker.  She said, "Wow! Stage IV breast cancer. How sad. I mean what do you do?"  Of course I had to replay it to make sure I heard it right.  Yes I did and now all of a sudden I am sucked back in to this doomsday sadness and worry again like back in 2008.  Reading and searching for others in a similar situation and wanting to be encouraged by other success stories.  I fear this will consume my thoughts again.

Anyone else out there in a similar situation?

 A little history:

Nov 2008 diagnosed with Stage I Grade 3 IDC

Sep 2009 NED

Nov 2011 diagnosed with Stage IV (in liver, lungs and bones) E+, P+ Her2+

Jul 2012 complete remission

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Posts 91 - 108 (108 total)

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Nov 18, 2012 11:24AM kingcour wrote:

Yes, I am still on taxotere. It has cleared up everything except the original tumor in the breast. It responded well at first. My nodes and bone lesions have completely cleared, and my liver has no activity as well. We are pressing on, I just have to stop to have the breast surgery. I will have a consult with the surgeon on the 28th.

Dx 4/25/2012, IDC, 4cm, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Nov 18, 2012 12:34PM NNBBFL wrote:

Congrats Kingcour and Ninalee:)    You have what we are all striving for and are proof that it is attainable !

Dx 11/23/2011, IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR+, HER2- Hormonal Therapy 05/15/2013 Aromasin (chemical name: exemestane, class: aromatase inhibitor) Hormonal Therapy 04/02/2012 Arimidex (chemical name: anastrozole, class: aromatase inhibitor)
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Nov 18, 2012 05:36PM nucci wrote:

NNBBFL, We have to be so careful with Internet searches because there is a lot of bad information out there, or partial information that takes us off course. I have a wonderful oncologist who answers all questions fully and clearly. I wish everyone had the same. I think that once we are Stage IV, cancer is a part of our biography, and we must recognize that but not let it control us. I ache and hobble around from my hormone therapy, but when the CT scan says "dramatically improved" I suck it up and deal with it. Medical students often suffer from the disease of the month that they are studying, and we have to guard against that. I really believe in a mind and body connection as to how we feel,and thrive. I have retired 10 years early to spend time with my family and enjoy life. A tough decision as I loved my life as a trial lawyer, but I love my family more. I am in remission for 14 months now, and am now beginning to worry as the anastrozole is expected to work for 18-24 months and I am 14 months in. My husband has progressive MS, diagnosed in 2008, so we are quite the jazzy couple. Stay strong, all the best.

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Nov 18, 2012 05:41PM nucci wrote:

Ninalee, what a great post. Thanks for the positive input. We are trying healthy eating, and greeting each day as a gift.

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Nov 19, 2012 05:30AM Scribe81 wrote:

Thank you so much for everyone's posts, especially the initial one by PowerofPink...I needed this today.

I don't have Stage IV, but my older (and only) sister DOES. She is 36, and undergoing treatment for Stage IV breast cancer for the 2nd time. The first time around, two years ago (she was cancer-free after for about two years) she was considered stage IV, because she had the cancer in her lymphnodes (some were removed) and an inoperal tumor on her breast-bone. The Dr's keep saying that she had the "slow growing" kind, which was a good sign somehow, even though she had a tumor on her breast bone. After all the treatments (chemo/radiation, etc.) she was cancer free. 

A few months ago the cancer came back. Now it has metastisised to her lungs (2 tumors), bones (several tumors), lymphnodes, and, just recently, they discovered a 1/4" tumor in her eye after a routine eye exam. I am terrified as to what the tumor found in her eye "means", does that increase the chance that the cancer will spread to her central nervous system? I haven't been able to find out much information on the internet about all this...

Her treatment, right now, in hopes of slowing/stopping the growth of the tumors and spread of the cancer is menopause (chemically induced), and various medications, which I'm not that familiar with. I have a hard time talking to her about all this, though she knows I'm here for support...

BUT, back to my original poinit--it's great to read all these encouraging posts and stories of recovery, remission, and hope! It's gives me some hope that she will someday be cancer-free, again, even though I know realistically that it may come back again someday...and that it's more like a "chronic" illness now...

But, thank you, thank you for the post that started this thread...I have good days, and bad days, when thinking about my sister and what's she, and our whole family, is going through...this thread helped make today a "good" day.

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Nov 19, 2012 02:03PM K-Lo wrote:

My MO told me early on that we were not looking for remission, but hoping to keep (the beast) dormant.   Words.    My mets shrunk back to original chest nodules at last check.   And thats where my thinking is going to be until they hit me over the head with some "uh oh" news.    Laughing

Whats the dif between nodes and nodules anyway?

Kathy Dx 8/30/2010, IDC, 4cm, Stage IV, 8/12 nodes, ER+/PR+, HER2-
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Nov 27, 2012 11:08AM NNBBFL wrote:

nucci,

Yes I hear you in regard to the internet information but I try to get the same information at multiple sources before I put too much faith in it. I too have a great oncologist and she is quite forthcoming when I ask her specific direct questions. I know what you mean about worrying about how long a treatment stays effective as I am on Arimidex (with minimal se) and initially my oncologist had told me that the average time it stayed effective was less than a year, I have been on it for 6 months so also am wondering about how long the good results would last. That said, it has been exactly 1 yr since my diagnosis and I am in a much better position now than a year ago. I am fortunate enough to be of retirement age so can focus on being well. I too believe in the whole mind/body connection so I am very much in tune with what I put in my body and get plenty of exercise and sunlight (Budwig Diet) and tune out the stressors. Here's hoping we both have many more stable months on our treatments.

Dx 11/23/2011, IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR+, HER2- Hormonal Therapy 05/15/2013 Aromasin (chemical name: exemestane, class: aromatase inhibitor) Hormonal Therapy 04/02/2012 Arimidex (chemical name: anastrozole, class: aromatase inhibitor)
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Nov 29, 2012 06:27PM debbie228 wrote:

I am so excited for you, I can't even imagine the feeling you have inside. I to am stage 4 triple negative straight from the get go. 3.5 tumor in right breast and had it removed. No nodes. Involved but the said spots in lungs. First I was mid dianoised then I went to Sloan in new York, I started taxol and advastin. Every week for three weeks and one week rest, started chemo Oct 19th. 2011, I get scans pt/ct every 2 months because of the trail I am on, first scan was Dec 19th 2011 and I was NED and every two months since Dec. I got the scans NED, my last scans were Nov 13th. 2012 and I am still NED. Thank you dear lord. The Dr was going to take me off the taxol awhile back she said she only leaves on 4-6 months but I was to afraid to be taken off didn't't want the crap to come back. So now it is a little over a year and the next visit in 2 weeks I will be taken off the taxol. She will leave on advastine. Which will only slow blood supply down if it ever comes back. I still will be getting scans every 9 weeks as per prodacall. I am very active like you, I think I have told you that in a previous message. I have now also taking on some of my volunteer work, I feed the hungry on Thurs. On my feet a lot, I have the neoropthy. With the taxol but I am a hell of a fighter so I push myself.my chemo weds. The volunteering Thurs. I make my butt get out of the bed get son off the school and I have 3 dogs and 1 cat so take care of them, my face is so red from the premeds on wed. And my throat hurts falso from premeds but that doesn't stop me. I hope with the grace of god that crap doexn,t come back for another 50 years. I a. Very positive and dr . Says also helps with outcome :-) I plan on being here for at least another 40-50 years. God bless all you women I keep all of you in my prays.

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Nov 30, 2012 01:29AM teacher911 wrote:

After just recently going from DCIS 4 years ago to Stage IV in October I keep searching these discussion boards for positive posts.  Thank you to all for sharing your stories.  I started chemo 2 weeks ago and go for my 2nd infusion tomorrow.  So far so good!  My prayer is that I will be NED for many years.  Thanks for all the support.

Dx 3/2008, DCIS, 1cm, Stage 0, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 9/2012, IDC, 1cm, Stage IV, Grade 2, ER+/PR+, HER2- Hormonal Therapy 03/15/2013 Radiation Therapy 04/17/2013 Partial-breast radiation: 3-D conformal external beam radiation (also called 3DCRT) Chemotherapy 11/16/2012 AC + T (Taxol): Adriamycin and Cytoxan, plus Taxol
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Nov 30, 2012 01:56AM Kelloggs wrote:

Good luck teacher911!

Kelly Dx 10/18/2011, IDC, 1cm, Grade 2, 5/8 nodes, mets, ER+/PR+, HER2+ Radiation Therapy 05/01/2012 Targeted Therapy 12/08/2011 Herceptin (chemical name: trastuzumab) Chemotherapy 12/08/2011 Carboplatin (brand name: Paraplatin), Taxotere (chemical name: docetaxel)
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Nov 30, 2012 09:12AM , edited Nov 30, 2012 09:15AM by BCSUCk

K-Lo,

Nodes as in Lymph nodes are temporary station for lymphatic system(a track of vessels) travelers.These travelers are usually lymphocytes in healthy individuals,however;in non-healthy individuals,nodes temporarily house cancer cells and infectious organisms,such as bacteria and viruses.

Nodules are just a medical term for a lesion or solid mass that shows up on diagnostic imaging such as CT or MRI that is less than 3 centimeters in diameter.If it is greater than 3 cm diameter then called mass.You may see these usage of words often on pulmunary and sometimes on liver lesion imaging reports.

Dx 5/25/2008, DCIS, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 10/05/2012 Taxol (chemical name: paclitaxel) Chemotherapy 06/01/2008 Adriamycin (chemical name: doxorubicin), Fluorouracil (also called 5-fluorouracil or 5-FU; brand name: Adrucil) , Mitomycin (chemical name: mutamycin)
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Nov 30, 2012 11:42AM LuAnnH wrote:

don't put too much stock in how long a tx will work.  Those numbers are just an average which means some people it may only work a month and others years.  You just never know which one you will be.  Between all the hormonal tx's availiable I got close to 6 years on them all, faslodex being the longest about 4 years.  I am back on the hormonals with afinitor and it seems to be working well.  Don't wait for that ball to drop and just go with the good run!

LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Dec 14, 2012 03:03AM kfontaine wrote:

CT Scan tonight at 1000 pm.....see what the liver has been up to!! Prayers and good thoughts needed!!

Kristen Diagnosed: 01/23/12 IDC, Stage IV, Grade 3, ER+/PR+ HER 2+ BMX 7/30/12, 2 mm tumor, sentinel node biopsy negative Targeted Therapy 02/23/2012 Herceptin (chemical name: trastuzumab) Chemotherapy 02/23/2012 Carboplatin (brand name: Paraplatin), Taxotere (chemical name: docetaxel)
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Dec 14, 2012 04:14AM aic wrote:

Great advice LuaAnnH! Kfontaine, just pm'd you....sending nothing but goodness your way!

Dx 8/31/2012, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2+ Targeted Therapy 09/24/2012 Herceptin (chemical name: trastuzumab) Targeted Therapy 09/24/2012 Perjeta (chemical name: pertuzumab; also known as Omnitarg) Chemotherapy 09/24/2012 Taxotere (chemical name: docetaxel)
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Oct 1, 2013 02:41AM ThePowerOfPink wrote:

Hello Ladies, It has been a while since I have been on and started this thread.  I am still here. xoxo :)

What a crazy ride this has been. I have come back on to reconnect with others that are Thriving with Stage IV. Every day is a challenge even when you are fortunate enough to have your cancer to start to go away and keep it stable. We will always be in treatment until it stops working and then move on to another.  The side effects shuffle is what I am calling it.  Adjusting to the "New Normal" with each new treatment and figuring out how to make the best of every day. The head trip of this journey is one of the largest struggles.

Since I have been on here I have had another surgery (in January this year) to remove my ovaries.  My cancer decided it was time to set up camp in both of them.  I have been on a new treatment now and doing well.  This new treatment has been better physically but not mentally.  I can't seem to find my new normal and its getting to me.  Every three weeks is my treatment schedule and I have not figured out my new normal because I am reacting different each time.  Its just nuts I say.  I guess I need to just understand the new normal is not having a normal.  Ok, I will go with that and work on it.  See you have already helped by me just typing away here. lol

Going out for a little walk now. It is just beautiful out today. xoxo

Dx 12/2008, DCIS, 2cm, Stage II, Grade 3, 0/1 nodes, ER+/PR+, HER2+ Dx 12/9/2011, DCIS, Stage IV, Grade 3, ER+/PR+, HER2+ Hormonal Therapy Surgery 01/09/2009 Mastectomy of one or both breasts: Mastectomy of my right breast; Lymph node removal (also called dissection): Lymph node removal (also called dissection) on my right side ; Reconstruction of my left breast: Tissue expander placement; Reconstruction of my right breast: Tissue expander placement Targeted Therapy 03/01/2009 Herceptin (chemical name: trastuzumab) Targeted Therapy 01/09/2012 Herceptin (chemical name: trastuzumab) Chemotherapy 01/09/2011 Xeloda (chemical name: capecitabine) Chemotherapy 03/01/2009 Carboplatin (brand name: Paraplatin), Taxotere (chemical name: docetaxel)
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Aug 30, 2014 12:38PM , edited Aug 30, 2014 12:42PM by Michelle101

 My name is Michelle and I'm a stage four breast cancer patient who had mets to my pelvic hip and spine. I say had because I am a survivor and my mets has been successfully treated through 25 rounds of radiation and tamoxifen hormone treatment. I am living proof that stage four can go into remission.  A long story short for over the last year I was having severe left hip pain. Went to numerous er and docs to be told it was sciatica. On my birthday February 28 this year I fell due to my hip giving out. Turns out I had cancer throughout my pelvic and Hip and my hip finally turned to mush and shattered. I spend a month and half in hospital. I am still wheel chair bound. They had to wait for the cancer to go and bone to reharden. I had a double mastectomy last Tuesday. Will have hip surgery in October to restore my walking, breast reconstruction in November. Know your tumor. Mine is er pr positive. Her2 neg. please stay positive. We stage four girls are living a llllooong time. If your oncologist tells you different then you need a new one. Do not google statistics, they are inaccurate. Was officially told today I was in remission.

Dx 2/28/2014, IBC, 1cm, Stage IV, mets, ER+/PR+, HER2- Surgery 08/19/2014 Mastectomy of one or both breasts: Mastectomy of my left breast, Mastectomy of my right breast; Lymph node removal (also called dissection): Underarm (axillary) lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side , Lymph node removal (also called dissection) on my right side Radiation Therapy 03/15/2014 Hormonal Therapy 03/03/2014
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Aug 30, 2014 01:23PM susan_02143 wrote:

Hi Michelle,

Welcome to our forum. You have posted on a thread from 2012. You will get a lot more responses if you start your own thread, and introduce yourself to the forum. Many of us having been living with mets for a number of years. Always happy to add another member to that long-term list.

*susan*

... and its back. May 3, 2010 mets found. Four years hanging with NED on Faslodex * 1/1/2015 progression Dx 6/8/2005, IDC, 3cm, Stage IIb, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Aug 30, 2014 01:38PM Michelle101 wrote:

thanks....most definitly will

Dx 2/28/2014, IBC, 1cm, Stage IV, mets, ER+/PR+, HER2- Surgery 08/19/2014 Mastectomy of one or both breasts: Mastectomy of my left breast, Mastectomy of my right breast; Lymph node removal (also called dissection): Underarm (axillary) lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side , Lymph node removal (also called dissection) on my right side Radiation Therapy 03/15/2014 Hormonal Therapy 03/03/2014

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