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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Bone Mets Thread

Topic: Bone Mets Thread

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. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jun 22, 2012 04:09AM - edited Oct 31, 2012 03:07AM by Jac53

Jac53 wrote:

I've started this thread after suggestions that it would be useful.

This is an easily readable Bone Mets Q&As from the Bone & Cancer Foundation:  http://www.boneandcancerfoundation.org/pdfs/Breast_Cancer_Q+A.pdf

Jeannie. "You only live once, but if you do it right, once is enough." Dx 6/19/1995, 10/15 nodes Dx 2/18/2011, Stage IV, mets, ER+/PR+, HER2- Dx 7/2/2012, Stage IV, mets, ER+/PR+, HER2-
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May 19, 2017 12:05PM - edited May 19, 2017 01:49PM by Micmel

Z~We're always thinking of you. I know Your results are playing around in your mind, you've mentioned that many times. You have many months under your belt, you're amazing. Your are the example for this medicine ibrance. Stay strong and know we are always here waiting for your next insight and thought. Sending you hugs of strength. Prayers as always ~M~ you are going into the wormhole I just came out of. Don't stay there too long. We need you. ~M~

Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/9/2016 AC Surgery 6/20/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 11/6/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy
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May 19, 2017 01:24PM momallthetime wrote:

Z was a tough month on BCO. It might not have helped. Your head gets to explode from time to time. You have helped me so much. I sometimes feel i should prick myself, because how else could it be that we are at the grocery, going to math projects, and the to pet/ct?? I think the brain gets wired to be able to sustain that type of intense life. One step at a time.

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May 19, 2017 01:29PM artistatheart wrote:

Take care of yourself Z, let your head heal and we will see you when you are ready. We think about you everyday.

Dx 7/22/2015, ILC, Left, 4cm, Stage IV, Grade 3, ER+/PR+, HER2- Hormonal Therapy 8/10/2015 Femara (letrozole) Targeted Therapy 8/25/2015 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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May 19, 2017 03:27PM Lita57 wrote:

Mom and everyone...I have pain from degenerative arthritis and bulging discs, as well as the cancer pain. Once I'm off my latest chemo cycle, MO thinks acupuncture may help. Need to get another recommendation tho. I know of a good one, but she's way over the mountain and thru the pass. Another is one on the Peninsula, and that would require bridge tolls, etc., but you have 2 find someone who knows what they're doing or its a waste of time and money.

I'm at the Social Security office now. State Dis has run out, so signing up for more SSDI.

Have a good weekend, ladies, and try not to ruminate over Mr. Cancer too much.


Stage IV Occult, Amorphic right from the gate. New Brain Mets Aug 2017. I've been dragged into an arranged marriage that I didn't agree to, & divorce is totally off the table now that I'm married to Mr. Cancer. STAGE IV LIVES MATTER! Dx 4/14/2016, IDC, Left, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Radiation Therapy 4/27/2016 External: Bone Targeted Therapy 5/15/2016 Chemotherapy 5/22/2016 Xeloda (capecitabine) Radiation Therapy 4/20/2017 External: Bone Dx 8/23/2017, IDC, 5cm, Stage IV, metastasized to brain, Grade 3, ER+/PR+, HER2-
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May 19, 2017 03:44PM - edited May 19, 2017 03:45PM by Kaption

Z-hope you are ok...


Dx 8/2005, DCIS, Left, Stage 0, ER+, HER2+ Dx 5/2012, DCIS, Right, Stage 0, Grade 3, 0/1 nodes, ER+, HER2+ Dx 6/2013, Stage IV, metastasized to bone, ER+, HER2- Chemotherapy Abraxane (albumin-bound or nab-paclitaxel) Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone Surgery Lumpectomy: Left
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May 19, 2017 05:09PM babs6287 wrote:

Artist. Enjoy winning all that$$$$

Kaption glsd you're feeling better!!! Do something fun though!!!

No real answers. They don't know why I had the pain where I did. Nothing showed on my spine MRI. that would cause that. I didn't have a UTI after all. And it's a wait and see on the rest for now. I guess no news is good news. Enjoy your weekend everyone!!!

Babs

Dx 8/17/2012, IDC, 4cm, Stage IIIC, Grade 2, 16/26 nodes, ER+/PR+, HER2- Surgery 8/23/2012 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 9/20/2012 AC + T (Taxol) Radiation Therapy 1/20/2013 Breast, Lymph nodes Hormonal Therapy 3/21/2013 Aromasin (exemestane) Surgery 8/28/2013 Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/29/2013 Reconstruction (left) Surgery 1/27/2014 Reconstruction (left) Surgery 5/17/2014 Reconstruction (left) Surgery 10/16/2014 Reconstruction (left); Reconstruction (right) Dx 1/2015, IDC, Left, <1cm, Stage IV, metastasized to other, Grade 2, 16/26 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 2/16/2015 Femara (letrozole) Targeted Therapy 3/13/2015 Ibrance (palbociclib) Dx 10/1/2015, IDC, Left, Stage IV, metastasized to bone/liver, Grade 2, 16/26 nodes, ER+/PR+, HER2- Targeted Therapy 10/23/2015 Chemotherapy 12/31/2015 Xeloda (capecitabine) Chemotherapy 10/6/2016 CMF Chemotherapy 12/9/2016 Taxol (paclitaxel) Chemotherapy 4/26/2017 Gemzar (gemcitabine) Chemotherapy 6/21/2017 Halaven (eribulin) Targeted Therapy 8/9/2017
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May 19, 2017 06:35PM Cure-ious wrote:

For anyone who, like MomATT/Dani, is considering trials with the AR Inhibitor Enzalutamide (also called XTANDI), the manufacturer put out a statement updating the drug this month, for the upcoming ASCO meeting, which includes the note:

"The companies have also decided that based on the enzalutamide data from the Phase 2 HER2+ and ER/PR+ breast cancer studies, there will not be follow-on Phase 3 studies at this time."

Which sounds like the drug isn't doing great in the phase 2 trial for this type of breast cancer.

Zar, I'm with you! It's summer, time to take a break!!


Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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May 19, 2017 06:57PM momallthetime wrote:

Hi Curi-ous I actually just sent you a message and to Zar, first you guys were just a rock!! Thank you so so much for being there. I used all the info you provided so freely.

Could I ask you to send the exact link, I wanna send it to doc, she seems adamant that it's gonna work. I tried going to ASCO but could not find that paragraph.

Thanks a lot.


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May 19, 2017 06:59PM momallthetime wrote:

Babs I am happy it's not worse. They left you in suspense all this time? At least now you know. Have a great weekend.

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May 19, 2017 07:45PM dlb823 wrote:

MomATT, if I remember correctly, Xandti was the last med Hope (Romansma) tried off label. It was extremely tough on her... not a good outome... Please look at some of her posts. I will also check PMs and emails when I get home later. (in car now on a phone with issues)

Z, glad to see your post. I was starting to worry.

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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May 19, 2017 07:51PM momallthetime wrote:

Deanna yes, it was from Hope that I knew about the AR business.

Agh.. this is not sounding so good.


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May 19, 2017 07:53PM momallthetime wrote:

Deanna yes, it was from Hope that I knew about the AR business.

Agh.. this is not sounding so good.

Be careful in the car, i also don't do well when I write on the phone, i have to wait to be at the computer.



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May 19, 2017 08:52PM PHOTOGIRL-62 wrote:

Thank you all for the birthday wishes. Hoping for a few more!

Hugs to all and enjoy your weekend!

Anita

Dx 10/30/2008, IDC, Right, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 8/24/2016, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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May 19, 2017 10:48PM Cure-ious wrote:

MomATT: Here is the link to the information about the AR inhibitor, its a press release that the company put out a couple of days ago- the part about not moving forward to phase 3 at the present time is in the fourth paragraph.

http://newsroom.astellas.us/2017-05-17-Astellas-An...

On the other hand, you have terrific doctors who do feel this is going to work, they feel this is her best next short, go in armed with your questions and when you meet the MO about the trial and to tell you stories of people who have had success, how long will it take to see if it is working, what are side effects, how quickly might she feel better, 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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May 20, 2017 07:55AM babs6287 wrote:

TMs from yesterday are in. They went up again Ugh!!! This gemzar really needs to kick in. Had my 3 rd txt last night. Another one next week and then my week off. Hoping these increases are the kick off before TMs start going down and Gemzar begins its magic!

Babs.

Dx 8/17/2012, IDC, 4cm, Stage IIIC, Grade 2, 16/26 nodes, ER+/PR+, HER2- Surgery 8/23/2012 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 9/20/2012 AC + T (Taxol) Radiation Therapy 1/20/2013 Breast, Lymph nodes Hormonal Therapy 3/21/2013 Aromasin (exemestane) Surgery 8/28/2013 Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/29/2013 Reconstruction (left) Surgery 1/27/2014 Reconstruction (left) Surgery 5/17/2014 Reconstruction (left) Surgery 10/16/2014 Reconstruction (left); Reconstruction (right) Dx 1/2015, IDC, Left, <1cm, Stage IV, metastasized to other, Grade 2, 16/26 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 2/16/2015 Femara (letrozole) Targeted Therapy 3/13/2015 Ibrance (palbociclib) Dx 10/1/2015, IDC, Left, Stage IV, metastasized to bone/liver, Grade 2, 16/26 nodes, ER+/PR+, HER2- Targeted Therapy 10/23/2015 Chemotherapy 12/31/2015 Xeloda (capecitabine) Chemotherapy 10/6/2016 CMF Chemotherapy 12/9/2016 Taxol (paclitaxel) Chemotherapy 4/26/2017 Gemzar (gemcitabine) Chemotherapy 6/21/2017 Halaven (eribulin) Targeted Therapy 8/9/2017
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May 20, 2017 08:12AM PHOTOGIRL-62 wrote:

Babs,

I was freaking out my TM were 2500 the last time on May 3rd after my first round of Xeloda. I'm hoping as "Z" told me it's a flair. Very scary to me. I am hoping this works some magic too.

Anita

Dx 10/30/2008, IDC, Right, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 8/24/2016, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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May 21, 2017 01:25AM momallthetime wrote:

Curi-ious I'll send her the link. Thanks so much for all your support. Gonna double down on my questions!

Babs, what can I say to make you feel better? When would they do the scans again? This is so stressful. Hope, hope.

Zar love thi link you sent about the other trial thanks so much.

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May 21, 2017 01:58AM Cure-ious wrote:

I wanted to mention a couple of interesting new drugs that are coming along, one for Her2-positive and the other for triple-negative:

1) Tucatinib for HER2-positive, cancers and in combination with Ibrance/Faslodex for Triple-positive cancers

https://breastcancer-news.com/2017/01/18/tucatinib...


2) The first CDK7-CDK12 inhibitor (at last!!) which just started in trial for triple-negative MBC, but might work in many cancers if combined with PARP inhibitors! Am keeping my eye on this one..

https://breastcancer-news.com/2017/05/18/syros-enr...



Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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May 21, 2017 08:03AM PHOTOGIRL-62 wrote:

HAPPY SUNDAY EVERYONE! Sometimes I just wish I could be as carefree and happy as this baby sea lion. I took it in the Galapagos in March. It was as if it was smiling at me and I thought it would be nice to be like this carefree, happy, beautiful creature. No worries, no MOs, no medication just carefree and happy. I know we all have our bad days, I have had a few lately then I think of the beauty in nature and all that we have to be thankful for and I put my troubles aside. Does anyone else ever feel this way? I think that if I didn't have my photography of wildlife and other nature photos I might be out of my mind. Hope you all are feeling the best you can under the circumstances. Thinking of everyone today and every day. Just think of the smile this little guy gave me!

Hugs,

Anita

Dx 10/30/2008, IDC, Right, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 8/24/2016, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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May 21, 2017 08:33AM Lindalou wrote:

Anita, I feel the same way when I head out with my camera. It helps me take my mind off of cancer and just concentrate on what is around me. Have you entered in any juried shows? The sea lion was for sure looking at you! Thanks for posting the photo.

Linda Dx 11/1/2007, ILC, Left, Stage IIB, Grade 3, ER+/PR+, HER2- Dx 8/2009, Stage IV, metastasized to bone Dx 5/13/2014 Targeted Therapy 4/21/2017 Ibrance (palbociclib) Radiation Therapy External: Bone Radiation Therapy External: Bone Surgery Mastectomy: Left, Right Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Radiation Therapy External: Bone Radiation Therapy Bone Surgery
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May 21, 2017 08:42AM PHOTOGIRL-62 wrote:

Linda, I have never entered any of my photos. I have traveled all over the world and did underwater photography and have been asked to enter my photos but I never had. I've traveled to Africa at least 9 times and stayed in the bush with all the wild animals. I have great photos. The closest I have ever gotten to any credit was my Pel's Fishing Owl. It was put in Africa Geographic. I love my photography and I started doing land wildlife after my first bout with BC. I'm going to Newfoundland in June hoping for Puffins and Gannets. Maybe some Orcas and Humpback Whales. It keeps me sane as best I can be.

Hope you are feeling good today!

Hugs,

Anita

Dx 10/30/2008, IDC, Right, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 8/24/2016, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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May 21, 2017 09:03AM Lynnwood1960 wrote:

Anita, love your picture, so candid and precious! I love pictures, my house is covered in photos of family and friends, there's no one else that I'd rather look at! I admire people who have the talent to capture such beautiful images. Thanks for showing us your work, please post more if you're so inclined.

Dx 4/6/2015, ILC, Right, 3cm, Stage IV, Grade 2, 0/12 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib)
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May 21, 2017 10:21AM Wendy3 wrote:

Photogirl

I spent two years in Newfoundland in my twenties I was in the military and stationed there. Water street is wonderful lots to see don't let them screech you in (you'll find out). I was posted in Freshwater in Placentia bay on the furthest eastern point. Mary's cove is a wonderful bird spot thousands of sea birds perch there. Have a great trip and bring a jacket. Love the pic

Dx 5/13/2015, IDC, Right, 2cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 21, 2017 12:35PM zarovka wrote:

Curious - thank you for following those drugs ... the research is particularly interesting when our lives are at stake, no?

>Z<

PM me if you would like to join a BCO Stage IV FitBit Community. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/1/2016 Ibrance (palbociclib)
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May 21, 2017 01:46PM Micmel wrote:

Couldn't agree more. Almost had a heart attack along with every other side effect possible today after an attempt to clean my bathrooms. I opened a letter from my health care company called "summary" oh how I love those monthly reports on how sick I am and how much my medicine costs each and every time they stick me with an unsuccessful blood drawing event. So now that they have sent this wonderful story of my life and how they have written to tell me that I am in the catastrophic category! As if I didn't already feel that way, why not put it in print and send it to me in writing.? So I am reading through, and oh gee as I read on they say by the way your prescription was denied. So I read on and it is the ibrance!!!! Only the most important medicine i am on. Never mind a. Phone call with someone saying hey something wrong here. They send a summary.??Seriously ??? Oh that's no big deal. It's only to treat cancer. No big deal. So I ended up researching everything and anything I could with my prescription, and and health plans,(after over an hour of sheer panic and terror) it turns out the specialty pharmacy tried to bill it a day too soon . Don't you think someone should have looked a little closer, to the issue?, before you send out a notice like that to someone ? That the medicine costs $11k per 21 pills? Maybe wait a day and then resubmit the dang thing? And not send a letter at all??? Stressed me out to the point where I need a nap. People can be so clueless or careless. Either word applies. Ugh! Maybe instead of a nap I should go try kick boxing !! Blow off some steam. My luck id break a leg! Have a good day ladies. ~M~

Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/9/2016 AC Surgery 6/20/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 11/6/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy
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May 21, 2017 02:29PM PHOTOGIRL-62 wrote:

Thanks Wendy. I will take your tips. I am really looking forward to going there. I heard the migration of shore birds is amazing. If I get a few good ones I will post them. I figured it might be cold in June so maybe winter coats might be good. For some reason these meds I'm taking make me extra cold. I'll let you know how it goes. Hope your doing ok. I'm sure the treatment is not very exciting but let's hope it work miracles!!

Anita

Dx 10/30/2008, IDC, Right, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 8/24/2016, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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May 21, 2017 03:40PM zarovka wrote:

Hugs Micmel. There are a lot of hoops with $11K per month drugs, which probably makes sense. Stuff like that happens all the time, but it seems like the pharmacy and the doc just deal with it. I just ignore it and it goes away.

It's not the end of the world if we get pitched off ibrance anyway. More excited about Abemaciclib.

Your awesome exercise routine is more beneficial than any line of treatment any way. My enthusiasm for these chemo drugs, targetted or otherwise, dampens daily the more I read. We all have to get off this chemo merry go round onto immunotherapy.... and it is coming.

Here is a note from Adventures with Cancer... ERPR+ MBC and cured by the NIH's Tumor Infiltrating Lymphcytes trial. I contacted them but not eligible until I progress on my first line treatment. Also, I need a resectable tumor but I have none at the moment... if and/when and when I qualify I will be on a plane to Maryland.

>Z<

PM me if you would like to join a BCO Stage IV FitBit Community. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/1/2016 Ibrance (palbociclib)
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May 21, 2017 04:15PM Micmel wrote:

Z~my DH and I have a house that is located ten mins from the NIH, and we know many people that work there. I am going to start asking some people about what you just mentioned. They have already have my file, and one of the people that belongs to my DH and DSS's scout troop works there. I'm going to see what I can dig up. Very interesting to see. Thanks for the mention and thanks for the words. ~M~ I also do not have a resectable tumor either, they took that out almost a year ago. There is always so many hoops no matter what you're dealing with. Do you know what company is running the trial through the NIH? I know Pfizer did ibrance and Novartis the sister to ibrance,kisqali. I'm going to ask around but thanks for mentioning it as usual. !!! I Am going to keep up the running. My bday is coming this week, I think I'm going to ask for new running shoes. And Win the lottery. ~M~

Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/9/2016 AC Surgery 6/20/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 11/6/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy
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May 21, 2017 04:36PM PHOTOGIRL-62 wrote:

Thank you Lynnwood1960. I love to photograph those special moments with birds and other wildlife. I'll share more for you to enjoy.

Thanks again,

Anita

Dx 10/30/2008, IDC, Right, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 8/24/2016, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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May 21, 2017 04:46PM - edited May 21, 2017 04:47PM by Lita57

The Twin Peaks marathon on HBO is taking my mind off monster cancer.

Forgot how great the show was...quirky writing, music, lighting, superb acting. New series starts tonight. 😆


Stage IV Occult, Amorphic right from the gate. New Brain Mets Aug 2017. I've been dragged into an arranged marriage that I didn't agree to, & divorce is totally off the table now that I'm married to Mr. Cancer. STAGE IV LIVES MATTER! Dx 4/14/2016, IDC, Left, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Radiation Therapy 4/27/2016 External: Bone Targeted Therapy 5/15/2016 Chemotherapy 5/22/2016 Xeloda (capecitabine) Radiation Therapy 4/20/2017 External: Bone Dx 8/23/2017, IDC, 5cm, Stage IV, metastasized to brain, Grade 3, ER+/PR+, HER2-

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