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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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Mar 27, 2021 11:09AM Spouse4Life wrote:

Grannax2...My wife has been on the "dog de-wormer" for 2 years since she found out about the mets to her liver. The drug is called fenbendazole. There is an entire facebook group dedicated to it. She certainly believes it has helped. I am a Doc, and while I can't confirm that it has helped...it certainly has offered her a considerable amount of hope...which is priceless. We did tell her med onc who seemed pretty agnostic about it or any other herbal thing we try.

In fairness, despite de-wormer and Ibrance/faslodex, and then de-wormer and Everolimus/faslodex, her liver mets kept growing (though over 2 years, no new ones popped up anywhere). She was starting to go downhill last October, so we did 4 weeks of targeted tomotherapy and she is now on 2,000 mg of Xeloda 7days on, 7 days off...in combo with the de-wormer/faslodex. This seems to be working (though I think most of the credit goes to Tomotherapy). Her CA 27-29 has finally reversed course and has been dropping from 6000 to 750, and she feels quite well.

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Mar 27, 2021 11:19AM BevJen wrote:

Spouse4Life,

Wow, you just dumped an awful lot of interesting information in that little post!

I've read all about the fenbendazole and get that.

I've never heard about tomotherapy and just did a quick look-see on google. Was the covered by your insurance, if you don't mind me asking? I am on Medicare and I found one thing that said it would not be covered by Medicare. Dammit.

Also, wow, your wife's CA 27-29- That's a fantastic drop. My TMs are now in the low thousands, and I am totally freaked out.

If you get a chance, I would really appreciate learning about the insurance and also about where your wife is treated. If you would PM me, that would be great. It sounds like your wife has a very creative and understanding MO, or else you two win the award for finding the most unusual treatments and combos (didn't know that anyone would give faslodex with Xeloda, either.)

Thanks.

BevJen

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Mar 27, 2021 12:04PM Spouse4Life wrote:

BevJen...we are in the Phoenix Metro area. I would not describe our MO as creative...though she has been rather tolerant of our choices. Continuing Faslodex with Xeloda was per our request. She was pretty adamant that tomotherapy would offer no benefit. She said it was simply playing whack-a-mole.

Our reason for ignoring her was based on out level of desperation last fall, and a conversation with a leading non Breast AC Onc in our area who shared with me that he too had that same whack-a-mole mindset until his own father was afflicted with metastatic prostate CA that went to his liver. He did the tomotherapy for his father, who also had an excellent response, and seemingly died years later of non-cancer old age stuff.

So we sought the tomotherapy out on our own here it town. Our insurance has covered everything once we meet our gigantic deductible, But we maintain traditional commercial insurance and not Medicare.



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Mar 27, 2021 12:47PM Bliss58 wrote:

Spouse4Life, that is interesting information. I did a quick search on tomotherapy, too. Is it directed at just a few defined liver tumors or do you know can it be used for diffuse liver mets?

Dx at 56 06/2015, IDC left, 4cm, de novo mets to bone; dx 04/2020 progression to liver. Dx 6/1/2015, IDC, Left, 4cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (FISH) Dx 6/30/2015, Stage IV, metastasized to bone Radiation Therapy 12/16/2015 External: Bone Surgery 2/17/2016 Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy 5/9/2016 External: Lymph nodes, Chest wall Hormonal Therapy 2/1/2018 Aromasin (exemestane) Dx 4/2020, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2+ (IHC)
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Mar 27, 2021 01:06PM BevJen wrote:

Spouse4Life,

Thanks for the info. Much appreciated. I am on the East Coast in the DC/Baltimore area so I'll have to do my research.

I'm also amazed that your MO did allow the use of faslodex with Xeloda. I recently went to keytruda (I have Tumor Mutation Burden-High so FDA approved). But it did occur to me that I've been on anti-estrogen therapy since 2004, and queried whether or not we could/should continue faslodex for that reason. Of course, I sent that in an email, and got zippo response. But that is interesting.

I am of the whackamole theory myself -- but not the way your MO is. I believe that controlling tumor burden has to be better than just hoping that systemic treatment will get everything. I've had three microwave ablations to two different lesions -- the last one was a redo bc they didn't get it all at first sweep. But I really had a tough time with the last two ablations and next time I need to do something, I'm interested in this tomotherapy as an option.

Thank you for raising all of these points.

BevJen

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Mar 27, 2021 01:18PM Spouse4Life wrote:

Bliss 58. I do not know if it can be used for diffuse mets or not. I do know that the rads onc Doc spent hours programming in the plan and they created a specific mold for her body so that she was always positioned in the exact spot each time.

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Mar 27, 2021 01:25PM Spouse4Life wrote:

BevJen...I clearly understand the whack-a-mole concept. But after two years with the original mets growing, but no new ones popping up anywhere, it was worth it, if nothing more than to control tumor burden. I will say that the rads onc Doc believes there are data that support that this type of radiation tx can create and an immune response to potentially target latent cells elsewhere. Again...this is conjecture based on limited data...but still reason to hope for something simply beyond tumor burden control.

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Mar 27, 2021 01:49PM candy-678 wrote:

Explain "tumor burden". I think of that term as the burden the cancer tumor has on the body. Is that correct? *****How do you measure that?

My tumor markers are not reliable for me. They fluctuate each month, but never got really high like some on here say theirs does. Even when I had the original 8 centimeter liver met at diagnosis. And the numbers have not changed much now even though I am having progression (albeit small progression).

My liver enzymes have always been in normal range, even with that 8 centimeter met.

So, it seems my body is not under too much of a burden. Am I correct?

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 8/1/2017 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) Hormonal Therapy 9/4/2021 Zoladex (goserelin) Targeted Therapy 9/4/2021 Lynparza
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Mar 27, 2021 02:18PM BevJen wrote:

Candy,

I don't know the technical definition of "tumor burden" other than that I think of it as how much cancer is in your body. Getting rid of any of it, to me, reduces the tumor burden -- at least that's how I understand the term. And I think some number of people cannot rely on tumor markers because they are not accurate for all. Also, they can be influenced by so many things in your body.

My liver enzymes have always been in the normal range as well, even when I had evidence from scans that nasty things were going on in there.

Can't answer your question about tumor burden.


Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Mar 27, 2021 02:29PM candy-678 wrote:

Thanks BevJen. I also have bone mets, but monitoring that is hard for me. I also have RA and previous bone scans have lit up everywhere. RA or mets???? I have not had a bone scan in over a year. So do not know how much of a burden the bone mets is adding to the liver mets. We can monitor the liver well with MRI.

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 8/1/2017 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) Hormonal Therapy 9/4/2021 Zoladex (goserelin) Targeted Therapy 9/4/2021 Lynparza
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Mar 27, 2021 02:48PM Grannax2 wrote:

Spouse 4 life. What is tomotherapy?

I’ve had lots of “whack a mole’ therapy in the past four years. Two y90’s, 2017 and 2019. I got one and one half years from the first set. I got a year from the second set. Then in November and December 2019 I had two Microwave ablations. My IR killed four tumors with the MAs but it felt like he almost killed me in the process. I am not a candidate for another y90 ( too much ittrium) and I will not have another MA. My body’s reaction was too severe. I don’t believe local TX to my liver is an option for me anymore. I also have mets to my lung. I’ve survived four years and I credit local liver TX for giving me this time. I’ve failed all the systematic TX that has been mentioned except dewormer. I would need lots more convincing and info about its history with my type of MBC.

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Mar 27, 2021 03:25PM Spouse4Life wrote:

Grannax2...the non technical explanation of tomotherapy is that it is similar to regular CT guided radiation treatment. However in this case, the tumor(s) are mapped out in detail based on your individual needs.Then you lie in a contoured sleeve that is also mapped to your body so you line up the same way each time. Next, the radiation beam rotates 360 degrees over and over, turning on an off as needed to try to target only the tumor and not healthy surrounding tissue. In so doing, they can deliver a higher dose off radiation to the tumor, while minimizing the overall radiation exposure.

I think my wife may have been uniquely sensitive to the effects (though she had zero side effects), as the Rad onc Doc said it can take 6+ months sometimes before you see tumor reduction and marker drops (instead you typically see a halt in progression). In her case, you could see shrinkage 5 weeks later at her final session. She had a PET 3 months later which showed additional shinkage and central necrosis of the largest met. Rad Onc guy was thrilled. Wife was mildly bummed, as she was hoping it would be gone completely. However, the trend thus far continues to show reduction via tumor markers, so we will ride that wave as long as possible, as I have no clue what the next step would be. I personally want her to try Enobosarm if that trial ever comes on board.

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Mar 27, 2021 04:24PM NicoleRod wrote:

geannax...I ready tried omprozole it didn't work for me either I tried prilosec..nexium and protonix....and I already take 40mg 2 times a day. I do NOT get acid reflux burning in my esophagus I only had silent gerd on Eribulin. I get acid pain severw only in my stomach now not reflux in esophagus...

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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Mar 27, 2021 06:03PM Sadiesservant wrote:

Hi Candy,

Tumour burden relates to the amount of cancer (also number of cancer cells and size of the tumour) throughout your body. I believe I have a high tumour burden as mine is in my right lung (pleural mets), throughout my skeleton (spine, hips, scapula, ribs, skull, etc.) and now in my liver.

In terms of TMs, mine are also not at all responsive. CEA is normal and CA 15-3 is only slightly elevated (43) even now with progression to my liver. My MO indicated that some cancers shed tons of the markers and then others.... Not very helpful when you are trying to decipher clinical symptoms versus stable scans

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 10/21/2007 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 4/19/2017 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) Chemotherapy 10/8/2021 Navelbine (vinorelbine) Chemotherapy 1/6/2022 Halaven (eribulin)
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Mar 27, 2021 06:44PM Bliss58 wrote:

Spouse4Life, thanks for your reply. Sounds like it's a targeted thing, so not workable for me right now.

Dx at 56 06/2015, IDC left, 4cm, de novo mets to bone; dx 04/2020 progression to liver. Dx 6/1/2015, IDC, Left, 4cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (FISH) Dx 6/30/2015, Stage IV, metastasized to bone Radiation Therapy 12/16/2015 External: Bone Surgery 2/17/2016 Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy 5/9/2016 External: Lymph nodes, Chest wall Hormonal Therapy 2/1/2018 Aromasin (exemestane) Dx 4/2020, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2+ (IHC)
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Mar 28, 2021 08:55AM candy-678 wrote:

Pocket duty this week for:

Sadiesservant- scans Monday--- when results?

Grannax- scans Thursday- when results?

Anyone else?

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 8/1/2017 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) Hormonal Therapy 9/4/2021 Zoladex (goserelin) Targeted Therapy 9/4/2021 Lynparza
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Mar 28, 2021 09:49AM HopeandGratitude wrote:

as always THANKS Candy-678. ❤❤❤❤

In your pocket tomorrow Sadiesservant!!!

Dx 3/1/2002, ILC, Left, 6cm+, Stage IIIB, Grade 3, 0/14 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 3/27/2002 CEF Chemotherapy 6/4/2002 AT Surgery 8/28/2002 Mastectomy: Left; Reconstruction (left): Free TRAM flap, Nipple reconstruction, Nipple tattoo Radiation Therapy 10/15/2002 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/4/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 1/12/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/1 nodes, ER+/PR+, HER2- (FISH) Surgery 2/14/2018 Lumpectomy: Left; Lymph node removal: Left Chemotherapy 4/3/2018 CMF Chemotherapy 8/5/2018 Taxol (paclitaxel) Radiation Therapy 10/9/2018 External: Breast, Lymph nodes, Chest wall Dx 3/13/2019, IDC, 1cm, Stage IV, metastasized to liver, Grade 3, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/13/2019 Femara (letrozole) Targeted Therapy 3/24/2019 Ibrance (palbociclib) Targeted Therapy 10/24/2019 Verzenio Dx 3/18/2020, IDC, 1cm, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/20/2020 Aromasin (exemestane) Hormonal Therapy 4/6/2020 Faslodex (fulvestrant)
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Mar 28, 2021 12:32PM snooky1954 wrote:

Nichole, I had gerd a while back for a few years but not constantly. It was always at night. I would wake up with such pains in my chest, it it would circle around to my back and over my shoulderss. If I sat up in bed bent over a pillow and practically layed on my head it would give slight relief. Then I found out about baking soda. I would put one or 2 tea in water and chug it down. In about 10 minutes the pain would go away. The way I understand it is it neutralizes the acids in your stomach. Unless I eat lots of spicy food (sucks no more pizza) I never get it now.

I would actualy think I was having a heart attack the pain was so bad. I ran this treatment past my primary and she said "well it saves you ER visits looking for a heart attack" lol. I I guess it was ok.

******

Remember when I told you that some of the Fentayal patches just didn't work because of the manufacturer?

Well, I went back to drug.com and read thru hundreds of reviews to find recommendations for the best manufacturer. The original manufacturer doesn't make them anymore (and gosh darn it that's the one everyone one loved) But three companies make the generic. According to actual users, MAYLAN, is the one they say gave them their life back. ( Of course the one I had was was rated #3) Not ONE user liked that one, fit only for the garbage was the common consensus. So my doctor wrote a new script and upped it from 12 to 25. I took to the pharmacist and told them I wanted Mylan only. That was this past Fri. I'll pick it up tomorrow. Pray God it works.

I totally understand about constant 24/7 pain it eats you up. It's not only that you can't move around and do things, it end up you don't even want to.

Good Luck to You And Don't give up. Remember whose child you are.

I would actually think I was having a heart attack the pain was so bad

Dx 7/2017, IDC, Right, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 8/2018, IDC, Right, Stage IV, metastasized to lungs Targeted Therapy 8/14/2018 Ibrance (palbociclib) Dx 11/1/2018, IDC, Right, Stage IV, metastasized to bone/lungs Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Chemotherapy Xeloda (capecitabine) Chemotherapy Taxol (paclitaxel) Radiation Therapy Bone Targeted Therapy Afinitor (everolimus) Chemotherapy Halaven (eribulin) Targeted Therapy Afinitor (everolimus)
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Mar 28, 2021 12:40PM candy-678 wrote:

AlabamaDee- Pocket duty for your MRI 3/29 and results 3/30.

Hi Snooky.

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 8/1/2017 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) Hormonal Therapy 9/4/2021 Zoladex (goserelin) Targeted Therapy 9/4/2021 Lynparza
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Mar 28, 2021 01:06PM HopeandGratitude wrote:

Dee- we will be pocket hopping!! Prayers!!!

Dx 3/1/2002, ILC, Left, 6cm+, Stage IIIB, Grade 3, 0/14 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 3/27/2002 CEF Chemotherapy 6/4/2002 AT Surgery 8/28/2002 Mastectomy: Left; Reconstruction (left): Free TRAM flap, Nipple reconstruction, Nipple tattoo Radiation Therapy 10/15/2002 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/4/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 1/12/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/1 nodes, ER+/PR+, HER2- (FISH) Surgery 2/14/2018 Lumpectomy: Left; Lymph node removal: Left Chemotherapy 4/3/2018 CMF Chemotherapy 8/5/2018 Taxol (paclitaxel) Radiation Therapy 10/9/2018 External: Breast, Lymph nodes, Chest wall Dx 3/13/2019, IDC, 1cm, Stage IV, metastasized to liver, Grade 3, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/13/2019 Femara (letrozole) Targeted Therapy 3/24/2019 Ibrance (palbociclib) Targeted Therapy 10/24/2019 Verzenio Dx 3/18/2020, IDC, 1cm, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/20/2020 Aromasin (exemestane) Hormonal Therapy 4/6/2020 Faslodex (fulvestrant)
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Mar 28, 2021 01:06PM snooky1954 wrote:

Chicagoland, FenBen-- First off don't wait 3 months that's not enough time for it to work. I remember the thrill when I found your thread. You need to take the FENEN, vitamin E, turmeric and Canablis OIL. Well, Frisky (dear sweet frisky), Goldie and I got all caught up in the excitement of a cure and started the ball rolling. Simone was there too and others whom names I forget. GOD we did tons of research in the medical journals, etc. We really thought this would work. I was also on J Tippons web-site. Tippons was so written up in so many publications. I stayed on it 5 months, (the FenBEN) Frisky a bit longer. One by one the others stopped posting too. It worked for none of us. Although the science was all there. PLEASE don't let this post stop anyone else from trying.

We did all sorts of things, mind control. You know if you think something will work and your brain convinces your body it can cure itself. I miss those days. They were so filled with hope, laughter, friendship.

If I reminder correctly, from TIPPONS website, this protocol worked mostly with those who had lung cancer.

Chicago, If you do start a new thread, please don't discard all the FenBen info. There's a lot of documented research on that thread.

Another thing that made this believable was the vetenrians.(sp) Several sources from them saying they had been using this on animals for years.

No need to be afraid of this, none of us got sick from it


Dx 7/2017, IDC, Right, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 8/2018, IDC, Right, Stage IV, metastasized to lungs Targeted Therapy 8/14/2018 Ibrance (palbociclib) Dx 11/1/2018, IDC, Right, Stage IV, metastasized to bone/lungs Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Chemotherapy Xeloda (capecitabine) Chemotherapy Taxol (paclitaxel) Radiation Therapy Bone Targeted Therapy Afinitor (everolimus) Chemotherapy Halaven (eribulin) Targeted Therapy Afinitor (everolimus)
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Mar 28, 2021 01:57PM Anotherone wrote:

anyone has an idea what has happened to a Goldie girl? Frisky was quite poorly by the end of her writing on forums but goldie seemed to be ok. Have not seen gumdoctor for a while either ..

Primary in 2006, metastasis 2019. Sorry can lot log in diagnosis and treatment info properly - it gets jumbled. On Kadcyla now as had progression on H&P Dx 10/10/2006, IDC, Left, Stage IIIC, metastasized to lungs, Grade 3, 4/9 nodes, ER-/PR-, HER2+ Dx 7/1/2019, IDC, Stage IV, metastasized to lungs Chemotherapy 9/16/2019 Abraxane (albumin-bound or nab-paclitaxel) Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy External: Chest wall Targeted Therapy Herceptin (trastuzumab)
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Mar 28, 2021 02:06PM BevJen wrote:

Anotherone,

Unfortunately, gum doctor passed away.

Goldie, however, is still posting on some threads -- I see her on "How About Drinking?" quite frequently.

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Mar 28, 2021 03:54PM Sadiesservant wrote:

Thanks for remembering Candy. Not sure when I will get the results. I meet with my RO the following Tuesday and my MO the next day. My MO is usually pretty prompt at getting back to me if the news is good.... He waited until our appointment with the last progression.

Singing

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 10/21/2007 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 4/19/2017 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) Chemotherapy 10/8/2021 Navelbine (vinorelbine) Chemotherapy 1/6/2022 Halaven (eribulin)
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Mar 28, 2021 04:22PM Chicagoan wrote:

Snooky,

The original thread still exists for whoever is interested-Mods moved it off of Stage 4 only. Three months was an exaggeration-I will probably start FenBen once I have to do IV Chemo. I still follow the Joe Tippens protocol FB page. From what I read, the protocol does not seem very successful against hormonally driven cancers. Right now my cancer still seems driven by estrogen, so my current treatments have been working well. Once that is no longer the case, I'll try the FenBen protocol. Too bad that it didn't work for Frisky, you or Goldie but it is certainly worth trying. It seems pretty low risk.

Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/26/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/26/2016 Ibrance (palbociclib)
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Mar 28, 2021 11:37PM - edited Mar 28, 2021 11:41PM by Cure-ious

My dog got an anal cancer that could not be fully removed by surgery, and it returned in August 2019, with lung mets that caused her great trouble breathing. The vet said not worth doing chemo, would make her very sick and this is aggressive cancer, it probably wouldn't give her more than a month or two.So my husband and I gave her fenbendazole- its poorly soluble so we put it in a pat of butter, and she dislikes the smell so we put the butter pat in a small ball of cream cheese. I fed it to her once daily for a couple of months, and the breathing problem went away. We nursed her through Thanksgiving and Christmas, and then last March I decided to drop the Fenbendazole completely and let nature take its course. The anal tumor is visible and she is fragile and has lost a lot of weight, but she is not in pain and still here, heading into the two year anniversary from when the vet sent her home. The breathing problems never returned. I definitely credit the drug for hitting her lung mets.

That said, I wouldn't take fenbendazole or mebendazole without some evidence of efficacy in a trial. In the lab it functions as a microtubule inhibitor, very much like the taxanes and other chemos we take-and if so it could have synergized with the immunotherapy Joe Tippens was taking in his trial. But nowadays most immunotherapy trials are done as combinations with chemo, radiation or other boosters anyway.

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Mar 29, 2021 11:05AM Grannax2 wrote:

Thanks, Cure ious. Your post makes sense to me.

Dee, thinking of you today, wishing you didn’t have to have brain MRI. I’m so not a fan of them but it will be a relief if it’s negative.

I’m already in scanxiety for my PET and MRI this week, results on 7th. It’s like it will be a crossroads for me. What choices will I need to make? My friend planted my garden for me, everyone needs a garden fairy. Maybe a tomato from my own garden will make me feel better.

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Mar 29, 2021 11:54AM - edited Mar 29, 2021 12:05PM by NicoleRod

Dee is your test today? If so, prayers for you!!

Sadie did you also have a test..???

I am trying so hard to keep track I am sorry I was away this week at my sons for Passover/Feast of Unleavened Bread so I may have missed some of you saying you have/had scans. I really love you all I am with you and will try to stay better updated.


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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Mar 29, 2021 12:48PM Bliss58 wrote:

Dee, thinking of you today, too. Fingers crossed for great results.

Grannax, in your pocket this week for scans. I'll have a CT this week, but don't know when yet. I feel the same as you about the crossroads. How nice you have a garden fairy! I'm so grateful for another spring.

Hugs to you all.

Dx at 56 06/2015, IDC left, 4cm, de novo mets to bone; dx 04/2020 progression to liver. Dx 6/1/2015, IDC, Left, 4cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (FISH) Dx 6/30/2015, Stage IV, metastasized to bone Radiation Therapy 12/16/2015 External: Bone Surgery 2/17/2016 Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy 5/9/2016 External: Lymph nodes, Chest wall Hormonal Therapy 2/1/2018 Aromasin (exemestane) Dx 4/2020, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2+ (IHC)
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Mar 29, 2021 12:51PM HopeandGratitude wrote:

Bliss58 - count me on being in your pocket this week whenever you need it!!!

Dx 3/1/2002, ILC, Left, 6cm+, Stage IIIB, Grade 3, 0/14 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 3/27/2002 CEF Chemotherapy 6/4/2002 AT Surgery 8/28/2002 Mastectomy: Left; Reconstruction (left): Free TRAM flap, Nipple reconstruction, Nipple tattoo Radiation Therapy 10/15/2002 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/4/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 1/12/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/1 nodes, ER+/PR+, HER2- (FISH) Surgery 2/14/2018 Lumpectomy: Left; Lymph node removal: Left Chemotherapy 4/3/2018 CMF Chemotherapy 8/5/2018 Taxol (paclitaxel) Radiation Therapy 10/9/2018 External: Breast, Lymph nodes, Chest wall Dx 3/13/2019, IDC, 1cm, Stage IV, metastasized to liver, Grade 3, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/13/2019 Femara (letrozole) Targeted Therapy 3/24/2019 Ibrance (palbociclib) Targeted Therapy 10/24/2019 Verzenio Dx 3/18/2020, IDC, 1cm, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/20/2020 Aromasin (exemestane) Hormonal Therapy 4/6/2020 Faslodex (fulvestrant)

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