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Topic: How are people with liver mets doing?

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Posted on: Aug 16, 2013 07:02PM

blondie1 wrote:

I continue to be very scared once I found my liver mets progressed after having to go off doxil. I am hoping to find some support in alleviating my deep seated fears by hearing other stories of people living and dealing with liver mets. My onc says I have such a petite frame (105) that an enlarged liver will definitely cause me some pain until chemo takes care of it.

How are others doing and getting through this with a positive attitude?

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Jul 19, 2021 04:52PM lafsunshine wrote:

Moth - so glad to hear you are feeling good, may that continue for a long long time

Candy - I am interested in hearing what you find out about local liver treatments. I was on Ibrance/Faslodex for a year and now I have progression. I will be starting keytruda and taxol soon. I asked my MO about doing any of the local liver treatments and she was against it for me.

Kabuki - sorry to hear you were having a tough time with treatment. I don’t have any experience with Verzenio, but I have read it might take a little bit for the body to adjust

Shelialeximom - waiting is the hardest part! Once your MO gets you on your treatment you wont feel as anxious. Be kind to yourself and know there are many treatments out there. You will find the people in this group have much knowledge and support to offer!

Nina - yourstory.....Wow! May you continue on doing well with your treatment

7/2021- Keytruda + Abraxane Dx 1/2018, IDC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+, HER2- Dx 7/2020, IDC, Stage IV, metastasized to bone/liver/other, ER+/PR-, HER2- Radiation Therapy Whole-breast: Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Hormonal Therapy Faslodex (fulvestrant)
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Jul 19, 2021 05:15PM lafsunshine wrote:

Candy, I just saw your update.....that’s outrageous!!! You would think being stage 4 would offer some lenience from insurance companies...


7/2021- Keytruda + Abraxane Dx 1/2018, IDC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+, HER2- Dx 7/2020, IDC, Stage IV, metastasized to bone/liver/other, ER+/PR-, HER2- Radiation Therapy Whole-breast: Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Hormonal Therapy Faslodex (fulvestrant)
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Jul 19, 2021 06:03PM candy-678 wrote:

AlabamaDee- I have called the Insurance Company 4 times today. And my PCP and MO. The PCP office had to go online and create an account. That can take up to 7 days to complete. Then they can put in the prior auths/ referrals. Which then can take up to 14 days to complete. I told the insurance company that I am a cancer patient and that the meds are established meds I am on and that I need the referrals of the consults.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jul 19, 2021 06:59PM SeeQ wrote:

Kabuki, The fatigue was much worse in the beginning for me. It improved over time, but did not completely resolve. There's another thread just about Verzenio here: https://community.breastcancer.org/forum/8/topics/...

Candy, I have to get authorization for every provider. My MO can request some, others I have to go back to my PCM to request - which always involves another copay. I even had to get a new referral for my MO, because the first one is only for a year. I agree they should be expediting everything in your case.



Diagnosed de novo Stage IV; numerous liver mets; single small breast tumor identified 4 weeks later Dx 6/2/2020, IDC, 6cm+, Stage IV, metastasized to liver, ER+/PR+, HER2- (IHC) Hormonal Therapy 7/2/2020 Arimidex (anastrozole) Targeted Therapy 7/9/2020 Verzenio
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Jul 19, 2021 07:22PM Rosie24 wrote:

Candy, I’m so sorry to hear about your insurance aggravations. It sounds ridiculous to have to interrupt cancer meds you’ve been taking, but I guess you’ve had no success with your phone calls. it’s not like it’s a minor illness. I would expect an MO’s office to run interference with the insurance company but they want your PCP to refer?? I know I’m no help, but I’m hoping this roadblock can be settled quicker than they said. (Maybe try the insurance tomorrow and ask for a supervisor?

Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- (FISH) Hormonal Therapy 1/24/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/3/2019 Lumpectomy: Left Surgery 12/3/2019 Lymph node removal: Sentinel Radiation Therapy Whole-breast
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Jul 19, 2021 08:18PM - edited Jul 20, 2021 09:56AM by NicoleRod

Hi all...well checked off some bucket list items this past weekend!

LIVER BIOPSY FINALLY....(its been 2 years) WED the 21st... please pray for me.

They agreed to do Y90 again since the tumors are not near the colon wall (like last time) so that can hopefully hold things at bay until the COMPLETE tempus results come back.


Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/29/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Jul 19, 2021 08:55PM Sadiesservant wrote:

Great news Nicole but…. Maybe add something fun to the bucket list. 😉

There are a number of new members that I want to welcome and send a virtual hug. I haven’t felt that I have much to offer as I am still figuring out the liver thing myself but am thinking of everyone facing challenges right now. Missing JFL, Arrolsen and Bliss..

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine)
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Jul 19, 2021 11:59PM Sadiesservant wrote:

Okay.. idiot moment Nicole… I read your message to mean that a liver biopsy and Y90 were on your bucket list. LOL. Apparently I am losing the thread figuratively and literally

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine)
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Jul 20, 2021 01:46AM - edited Jul 20, 2021 03:25AM by Kabuki

At least now I know the reason for the fatigue. I still have a 6 pack of peppers, lemon cucumbers and broccoli plants to get into my garden. I have tried to get my vegetable garden done since May and have been too exhausted to finish. It used to be so easy.

I have a CatPet scan on Wednesday and am concerned about other Mets. 2 years ago, I broke a rib over my liver posting on a horse. I was a bit paranoid than over bone Mets but never followed up.

I was very nauseous today after taking the morning dose of Verzenio and was able to get a prescription for an anti emetic.

SeeQ, I will check out the Verzenio thread. The uncontrollable diarrhea really concerns me. I still want to work and live as normal a life as I possibly can. It's still so surreal that this is happening after 11 years


Dx 6/2009, IDC, Left, 6cm+, Stage IIIC, Grade 2, 3/7 nodes, ER+/PR+, HER2- (IHC) Dx 7/2021, IDC, Left, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- (IHC) Targeted Therapy Verzenio Radiation Therapy Surgery Mastectomy: Left; Reconstruction (left): DIEP flap Chemotherapy AC + T (Taxol)
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Jul 20, 2021 03:09AM BSandra wrote:

Dear Katty&Moth, thanks for the update on Arolsson - she's such a fighter. I know June was crazy for you guys, so, again, thanks for not forgetting about others.

Moth, so great you are feeling great! Nicole... like always... prayers, may prayers towards you and your husband - you guys are fighters and will find a way, I am sure. I will insert an image from latest case-report by Alex Prat that shows how important it is to target exactly what you need to target:

"Patient with an advanced breast cancer ER+/HER2low progressing to ET+palbo, taxol, cape DNA:TP53mut, PIK3CA H1047R, HER2 L755S RNA:HER2-enriched No response to lapatinib+trastuzumab but response to alpelisib".

Brilliant pCR!


Saulius

Since May'21:NED. Mar'21:axilla LN surgery. Sep'19-Mar'21:NED. Feb'19:recurrence, left breast,IBC. May'18-Feb'19:NED. Jun'18:DC/CIK. Aug'17:stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall Surgery 4/15/2021 Lymph node removal: Underarm/Axillary
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Jul 20, 2021 09:57AM Grannax2 wrote:

Candy. Yes I was on Ivrance/ Femara when I had my first y90 in 2017. Yes, my MO kept me on it for another year because it was keeping my lung mets stable and the liver mets were stable because of y90. For my 2019 y90. I was put on Faslodex while I had the y90 procedures. My lung mets responded for a year before it failed.

Nicole, you will be the only other BCO that I know of to have a second y90, except for me. You go girl

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Jul 20, 2021 10:26AM SeeQ wrote:

Kabuki, in your pocket for your scan tomorrow. You didn't mention what dosage you're on. Some people find a dose reduction necessary due to SEs, and the Verzenio is supposed to be effective at a lower dose.

Diagnosed de novo Stage IV; numerous liver mets; single small breast tumor identified 4 weeks later Dx 6/2/2020, IDC, 6cm+, Stage IV, metastasized to liver, ER+/PR+, HER2- (IHC) Hormonal Therapy 7/2/2020 Arimidex (anastrozole) Targeted Therapy 7/9/2020 Verzenio
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Jul 20, 2021 10:44AM DaughterOf wrote:

Hi all,

As you know my mum has 2 big (5cm) liver mets and 5+ smaller ones. Her tumor is Er-, Pr+ and Her2-.

Recommended therapy for her is Letrozole plus Ibrance followed by cyber knife and thomo therapy. However, due to extensive mets in her liver and most likely other places (will do a pet scan in the future) and Er- histopathology report, the doctors she's seeing in a private hospital in Greece want to put her on immunotherapy, most likely Tecentriq.

She's starting with letrozole + ibrance today.

Tecentriq is crazy expensive and I'm scared it won't work with her. I want her to avoid chemo because she still believes chemo=death. I simply know that if she can avoid chemo for now she will be able to accept this new diagnosis more easily.

She's so scared and already really hopeless and idk what to say to make her feel better.

Dx 11/2012, IDC, Left, 5cm, Stage IIIC, 4/6 nodes, ER+/PR+, HER2- Dx 6/2021, IDC, Stage IV, metastasized to liver, ER-/PR+, HER2- Chemotherapy FAC Chemotherapy AC + T (Taxol) Surgery Mastectomy: Left Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Jul 20, 2021 11:31AM leftfootforward wrote:

daughter of- you are in the scary part of treatment now. It’s hard especially when it isn’t you and you don’t feel like you have control of anything.

I want you to know that while chemo is har and has earned its reputation, not all chemos are the same. People respond differently to different treatment regimens. Sometimes chemo is too much but other times chemo is life saving.

As someone who has been battling both brain and liver Mets for 9 years, I would say chemo has saved/extended my knife. I have also been able to live a very fulfilling life. It isn’t always easy, but I’m still around 8 years after they expected.

I am not hormone + but wanted to give you some hope that even if chemo is necessary, it doesn’t mean it’s the end.

Dx 12/13/2010, IDC, 3cm, Stage IIIA, Grade 2, 1/16 nodes, ER-/PR-, HER2+ Dx 12/4/2012, IDC, Stage IV, 0/0 nodes, ER-/PR-, HER2+
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Jul 20, 2021 11:41AM candy-678 wrote:

DaughterOf- Can you explain thomo therapy. I do not know that term. I do not know what advise to give you---sorry.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jul 20, 2021 11:47AM moth wrote:

Daughterof, Tecentriq is meant to be given with chemo. I've been on it since March 2020, first with Taxol and then since November with Abraxane. And yes, it is expensive.

I can see why they're considering it, with her ER-. Remind me, is the PR very low? Because then they'd sort of be treating her a triple neg... but again Tecentriq alone is not standard of care. It's approved in the US with Abraxane only but offlabel others do use it with another chemo backbone, and I've also heard of people starting on tecentriq+abraxane and then dropping just to tecentriq, but not starting it alone.

For me, chemo+immuno is life. It has made me so much better! I exercise, I walk with my dog, I train agility with my dog, I take drives, do stuff around the house, putter around my garden etc. This is me just a couple days after chemo infusion (i'm getting chemo every 3 weeks now; tecentriq every 2 weeks). It's not as high impact as I used to do but I'm not debilitated. https://www.instagram.com/reel/CQCq3gpAngM/ I just sometimes need an extra nap.


I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Jul 20, 2021 11:56AM - edited Jul 20, 2021 12:31PM by B-A-P

Has anyone had experience with liver enzymes increasing on Tamoxifen? I just spoke with my GP. Ive been having some Upper GI issues , early fullness , ect . I had blood work done before my Zometa yesterday and so I called the Dr. and he said my AST was up ( i think he said 163? but i can't remember. Just that it was a significant jump from End of may since upper end of normal is 37 ) ALT is 88. Up from 66 but he said it's not significant. Now I'm just concerned that things are happening fast again.

Dx 8/17/2018, IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Chemotherapy 9/17/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery 2/26/2019 Mastectomy: Left, Right Radiation Therapy 4/28/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy 10/7/2021 Ibrance (palbociclib) Dx IDC, Stage IV, metastasized to liver, ER+/PR-, HER2- (FISH) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal Chemotherapy Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy Faslodex (fulvestrant)
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Jul 20, 2021 12:05PM DaughterOf wrote:

Hi all and thanks for replying,

My mum is strong progesterone positive (allred score 6).

Thomo therapy is targeted radiation, similar to cyber knife. Here's more about it https://www.accuray.com/tomotherapy/

Moth, you look so beautiful and happy ❤️ I wish my mum wasn't so scared of chemo as I am aware of its benefits and how helpful it can be.. But she absolutely refuses any treatment and I barely convinced her to try letrozole plus ibrance, telling her she won't lose her hair and it's absolutely not chemo.

She was on FAC and there's a lot of stigma surrounding chemo where I'm from.. She thinks it equals a death sentence. I'm a doctor but I can't convince her otherwise.

The doctors in Greece didn't mention Tecentriq goes wirh chemo. I will ask.

I just wish there were more ppl with Er - and Pr+ who could share their experiences with Ibrance and AI. ☹️


Dx 11/2012, IDC, Left, 5cm, Stage IIIC, 4/6 nodes, ER+/PR+, HER2- Dx 6/2021, IDC, Stage IV, metastasized to liver, ER-/PR+, HER2- Chemotherapy FAC Chemotherapy AC + T (Taxol) Surgery Mastectomy: Left Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Jul 20, 2021 12:18PM lafsunshine wrote:

Moth - Wow, you go girl! You got some awesome moves there! Your video put a smile on my face, thanks for that! I will be starting immunotherapy and chemo soon. I will be on keytruda and Taxol. I get my port placed tomorrow.


7/2021- Keytruda + Abraxane Dx 1/2018, IDC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+, HER2- Dx 7/2020, IDC, Stage IV, metastasized to bone/liver/other, ER+/PR-, HER2- Radiation Therapy Whole-breast: Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Hormonal Therapy Faslodex (fulvestrant)
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Jul 20, 2021 01:33PM candy-678 wrote:

DaughterOf- I am now ER-/PR+, but I was ER+/PR+ when I first started Ibrance/Letrozole. I got 3 1/2 years out of I/L before my latest biopsy showed the flip to ER-. I am in the middle of discussing my next options so I do not know if I will be going off I/L even with the flip of the ER status. Sorry I cannot help you there.

I am going to put the Tomotherapy on my list of things to discuss with the RO, when I get there--insurance hold up right now. Wonder how it differs from SBRT? I need to research this. Thanks for the link.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jul 20, 2021 06:11PM DaughterOf wrote:

Candy, glad I could add another question to your list. Staying informed is important.

I don't think even the best oncologists are certain of PR role in breast cancer. I'm really scared I + L won't work with my mum..

We spoke to her Greek doctor again today. He wants her to do a pet scan and a full body mri + liver enzymes before he can say if she's still a candidate for cyber knife and thomo therapy.. He says her liver needs to be in optimal condition to withstand the destruction of the tumor with the cyber knife. I'm honestly so scared.

Her diagnosis alone took nearly 2 months!!! The doctors were puzzled because her tumor markers were normal and waited until biopsy to tell us its not looking good.

I'm so upset with this! What if she can no longer get radiosurgery because of negligence..

Dx 11/2012, IDC, Left, 5cm, Stage IIIC, 4/6 nodes, ER+/PR+, HER2- Dx 6/2021, IDC, Stage IV, metastasized to liver, ER-/PR+, HER2- Chemotherapy FAC Chemotherapy AC + T (Taxol) Surgery Mastectomy: Left Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Jul 20, 2021 06:16PM ShetlandPony wrote:

Kabuki, my heart goes out to you. You are struggling with the fact of recurrence as well as with the effect the new drugs have on you. I guess I want to say that although some level of fatigue is always there for me, and I have had times when everything is a struggle, I have found that there are also times when I feel pretty good or fairly normal. Though things are really hard right now, you may enter into better times. In the meantime, lower your expectations to reduce frustration, and be kind to yourself. Prioritize the essentials such as having meals to eat, and anything that brings you joy or contentment. The rest, let it go, save it for later, or delegate it to someone else (paid or volunteer).

Candy, unbelievable. No, sadly,believable. May your day of phone calls result in timely treatment. It is ludicrous that they would allow you to go off your Lupron schedule.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Jul 20, 2021 06:19PM ShetlandPony wrote:

I feel better than I have in a long time. On my trial 1 1/2 years now. Scans look great. But I am worried that my tumor markers have started a slow, steady rise. I emailed my onc about it.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Jul 20, 2021 07:26PM candy-678 wrote:

Another day of multiple phone calls to the Insurance company and the docs office. Cancelled my Lupron injection for tomorrow (Wednesday) due to no prior auth yet. Rescheduled for Friday and hoping will be authorized by then. Still working on the Ibrance prior auth but have pills till next week, so hoping will be hashed out by then. Exhausted by it all today. I lost my cool with the insurance company, and my PCP nurse lost her cool with me-- said she had other things to do but sit on the phone all day about my stuff. Day 3 of calls will start early in the morning--- Insurance company opens at 7am and I plan on calling them first thing. I can be like dog with a bone--- Hey I gotta isolate at home due to increased Covid cases in our area so I might as well do this.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jul 20, 2021 08:12PM Kabuki wrote:

SeeQ, I’m on 150mg. I have a history of being sensitive to drugs and usually require the lowest loading dose.

Shetlandpony, Having no energy is tough. I am in heart failure from Adrymiacin and left sided radiation from my primary cancer. The meds for blood pressure and heart made me very fatigued so the cancer fatigue has been a double whammy.

I’m wondering what the oncologist was thinking when he said that they can help with the fatigue. I want a better quality of life.

Dx 6/2009, IDC, Left, 6cm+, Stage IIIC, Grade 2, 3/7 nodes, ER+/PR+, HER2- (IHC) Dx 7/2021, IDC, Left, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- (IHC) Targeted Therapy Verzenio Radiation Therapy Surgery Mastectomy: Left; Reconstruction (left): DIEP flap Chemotherapy AC + T (Taxol)
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Jul 20, 2021 11:32PM - edited Jul 20, 2021 11:34PM by ShetlandPony

That heart damage does complicate things, doesn't it, Kabuki? I was thinking that my friend has tried various blood pressure meds, and some cause more fatigue than others. I wonder if you could talk to your cardiologist about trying one less likely to cause fatigue. I agree with Dee that it would be good if you could get a palliative care evaluation, sort of a big picture to come up with ideas to help you feel better. Palliative specializes in mitigating symptoms and side effects.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Jul 21, 2021 12:24AM Kabuki wrote:

AlabamaDee,

I’ll ask my oncologist about it. My cardiologist would have to be consulted. His office is moving and he’s not available until August.

Shetlandpony, the emergency room physician did not like the primary care physician that my insurance gave me and had me switched to an internist that is also a palliative and hospice doc. I see him next week. I was given a prescription for morphine from the ER doc but the nausea and vomiting side effects were intolerable. I cannot tolerate any opiates. He wrote me a prescription for Celebrex which helps somewhat and is tolerable. There have been studies with Celebrex and cancer

Dx 6/2009, IDC, Left, 6cm+, Stage IIIC, Grade 2, 3/7 nodes, ER+/PR+, HER2- (IHC) Dx 7/2021, IDC, Left, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- (IHC) Targeted Therapy Verzenio Radiation Therapy Surgery Mastectomy: Left; Reconstruction (left): DIEP flap Chemotherapy AC + T (Taxol)
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Jul 21, 2021 02:14AM BSandra wrote:

Dear DaughterOf, first of, definition of chemotherapy is "The therapeutic use of chemical agents to treat disease", so basically all drugs in modern history are chemotherapy, with different mechanisms of action. Chemotherapy in oncology is simply one class of drugs with different subclasses. Most of cancer patients who are alive today and live fulfilling lives were treated with chemotherapy. Some of the newest (and very successful) targeted therapies (like ADCs) also deliver chemotherapy to cells. So... there's no need to be afraid of chemotherapy. Side effects is a different thing but, for example, I know one woman who did >20 cycles of docetaxel (one of the strongest ones) and her blood counts always were good, she was feeling super well, worked, did light sports and was traveling between infusions. My wife had 18 cycles of docetaxel and was working 75% load as an accountant of pretty big company. So, basically, you never know how your mom would feel on chemo. One important thing, from my experience, is time. Waiting with this disease is not good. I'd say, get an exact plan, start one of the most recommended regiments, and then you'll have time to think and to explore other options. Wish you all strength, Saulius

Since May'21:NED. Mar'21:axilla LN surgery. Sep'19-Mar'21:NED. Feb'19:recurrence, left breast,IBC. May'18-Feb'19:NED. Jun'18:DC/CIK. Aug'17:stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall Surgery 4/15/2021 Lymph node removal: Underarm/Axillary
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Jul 21, 2021 11:14AM Grannax2 wrote:

Shetland Glad your scans look great. That trial has worked well for you.

Candy Wrong, just wrong. I cannot believe that nurse spoke to you like that. Shame on her. Keep making those phone calls if that’s what it takes

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Jul 21, 2021 04:25PM Sheilaleximama- wrote:

thank you moth that would be great. No rush. I’m doing pretty good taking things slowly and giving myself permission to rest when I’m tired. 1 more week till I know what’s next. Also have a lot of questions for the Doc. Big hugs and wishing all of you the best.

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