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Topic: My Husband, My Life, My Love, My Family, My Cancer

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute —

Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: Jul 6, 2017 05:38PM - edited Oct 28, 2019 09:42AM by Micmel

Micmel wrote:

As I go through this forced path I have been thrown down, I have come to realize the love I have always had for my husband was strong. He is amazing and I love him with my very soul and entire heart. Never would I ever imagine the thought of dying and him being alone. Then the worst part hit me!! I can't seem to shake the horrible sorrow of thinking of another woman taking my place in his life and his heart, and if I Am honest his bed. He is my best friend and the love of my life, I would never need another for any reason. He makes my life complete, and then this happens. How do I process that I most likely won't be the one growing old on the porch that we have talked about, how do I process, someone else sitting in that chair? I hate this trajectory path I've been spun onto, and everyday I feel grief and deep sorrow. How do I live everyday knowing in the back of my mind, I feel like a place holder, for another woman who will be stepping into my life when I die of this horrible disease, more sooner than later. Why would I even want to take any medicines or treatments, when the answer is pretty obviously in front of my face.? Why do we fight so hard for something we cannot control ? Why do we hurt so badly thinking about letting go, or giving up? It's a four letter word that holds so much power. That word is LOVE..... If you have ever felt this way. Share with me, because I understand, I feel this way everyday. I also don't know what to do with the sadness of loss or how to process the process of dying. However slow or fast it may be. Please share your love stories with me, how did you meet? How long together? I want to know your stories, everyone has their person. Everyone loves.....tell me about your family, your friends, your life too, as if this was your living room. ♥️

We are team FU cancer (Named by Parry, our sweet sister) and this is our Lol pub and living room. Welcome, put your feet up and just be you!

Everyone has to dance, they just don’t know what song they will get. Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/10/2016 AC Surgery 6/21/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 7/20/2016 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 11/7/2016 Ibrance (palbociclib) Surgery Chemotherapy Chemotherapy Hormonal Therapy Arimidex (anastrozole)
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May 13, 2021 06:27AM mara51506 wrote:

I didn't post yesterday so missed a lot, for people recovering from surgery and illness heal soon. I am happy to hear BevJen is getting some steps in and every step is a win.

I am trying a new route outside. It is the same route I like for the half hour walks but this time, I am doing two laps up and down the side streets to stretch it. I got 4500 steps vs 3000 which would allow for fewer walks to meet my personal 10000 goal. I know that the 10000 is more marketing and that daily walking is good but I do have that personal goal set for myself.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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May 13, 2021 07:19AM Kittykat9876 wrote:

Hi everyone, good to hear that you are making progress Booboo. I hope you have a lovely visit with your mom Tanya. Candy, after so long being isolated from each other things are bound to be a bit stilted at first at least they respected your wishes and accepted your boundaries, things are bound to get more relaxed as you see each other on a regular basis with the new protocols, for want of a better word.

I can't wait to pick up my new car, I went back to bingo tonight, it was good to get out of the house for something other than doctor's appointments, and having a little win was the icing on the cake. Mara, its good to set goals for ourselves, even small ones, I hope your db can get the air-conditioning sorted out for you before the summer heat arrives.

Moth, I'm having to sleep on my back as well for the time being, I rolled onto my side during the night and woke up in agony, like my rib was poking into me but I'm so sick of seeing doctors I'm just going to ride it out if I can til next Thursday when I see Sanju.

Surgery 5/23/2013 Lumpectomy Dx 10/31/2017, Left, 6cm+, Stage IV, metastasized to bone/lungs/other, Grade 3, 2/22 nodes Chemotherapy 1/28/2021 Navelbine (vinorelbine) Targeted Therapy Afinitor (everolimus) Radiation Therapy External: Bone Hormonal Therapy
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May 13, 2021 08:41AM mara51506 wrote:

KittyKat, I am glad you were able to get out as well, you guys in Australia handled the pandemic better than a lot of other countries and it is a benefit that you can go out and enjoy yourself. Also happy for you about the car, new things are always nice to get. Very exciting.

I was happy because I did an offer on my survey site which paid 120 US which was fantastic. Will go a long way toward my groceries that I save for.

\

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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May 13, 2021 09:16AM Sunshine99 wrote:

moth and runor, I remember taking the pyridium years ago. It helped immediately with the pain of the bladder infection. I also remember traveling in Germany when I got a bladder infection. Great! How DO you say "bladder infection" in German??? I went into a pharmacy, and was somehow able to communicate what my problem was. They gave me some herb called Bear Grape Leaf Extract (or whatever the German equivalent was). It worked beautifully. This was an OTC product since they couldn't give me an antibiotic without prescription. They were very kind and patient with my struggle to use words in German that I didn't know. I think it was some kind of pill or capsule.

Anyway, if you have access to anything like that, it might help. I haven't, THANKFULLY, had a bladder infection in years. They're the worst.

Carol

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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May 13, 2021 06:28PM Micmel wrote:

Hello ladies ~ I hope those who are scanning and. Waiting. Know I'm in your pocket. Thinking of you all. I have been in a fog state for about three weeks now. I'm bored. Nothing makes me happy. Nothing excites me. I don't enjoy doing anything. I could care less about getting up, I'd rather just sleep. It's the only thing I truly love. I feel like this past six years has been such a let down to my life I just can't some to terms With what I've and its become. I don't like how I am anymore and miss my old powerful woman who did it, no matter what it was. It is hard to change things when you do have control. Ten times harder,. When you don't have control. Cancer needs to choke and die

Everyone has to dance, they just don’t know what song they will get. Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/10/2016 AC Surgery 6/21/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 7/20/2016 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 11/7/2016 Ibrance (palbociclib) Surgery Chemotherapy Chemotherapy Hormonal Therapy Arimidex (anastrozole)
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May 13, 2021 06:42PM mara51506 wrote:

Well, my province is going into another 3 weeks of lockdown which is unsurprising. I try not to let it bother me, but I feel bad for kids in school, they have not been in class since april and no idea if they get to go back or what happens. They also lose out on playing with each other and socializing. Must be awful for teachers, kids and parents with remote learning. A high percentage of kids are not understanding t he online learning as well. I am glad I am getting my first shot on Monday, probably Pfizer or Moderna since my country has halted using the Astra Zeneca. Not sure where that leaves people who got the first dose of AZ, whether it is effective with another vaccine to use as a second dose.


2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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May 13, 2021 11:53PM SondraF wrote:

Mara - they are testing that mix and match now and early reports that it throws up "more mild side effects" than one or the other alone. I didn't think that was possible after AZ but if so.... I dont think I would want to do that unless necessary. Here they are letting people who are now banned from AZ, but had a first dose, having them take the second. I think they have a choice but its not really clear. Other Half goes for his Pfizer today after being called up for AZ two weeks ago and the guidance changing. He seems rather excited by the prospect, but I will just be glad for him to get it done.

Heading into the city in a few hours for the first time (well, beyond the Hospital) in almost 6 months. Stopping at the office to see my manager in person and then off to lunch with work friend and a bit of shopping in ACTUAL STORES afterwards. Which is good, I need to check some thread colors for a project I have brewing.

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 11/28/2019 Femara (letrozole) Targeted Therapy 11/28/2019 Ibrance (palbociclib) Surgery Prophylactic ovary removal
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May 14, 2021 04:39AM booboo1 wrote:

Mel,

I urge you to call your palliative care group and ask them for help. You sound severely depressed after the loss of both of your furry boys, and all of the other crap that cancer has delivered to your doorste....it’s jumping out of the words you write. I am very concerned about you, my friend. I am not exactly the picture of joy and happiness myself, but I recognize depression when I see it because I can go to those dark places too. I love you girl, and we need our Mel and her living room to join together and stay strong. So please reach out and ask for help.


Laurie (aka Booboo) Surgery 5/15/2013 Lumpectomy: Left; Lymph node removal: Sentinel Dx 1/2017, DCIS, Left, 1cm, Stage 0, metastasized to bone/liver, Grade 2, 1/4 nodes, ER+/PR+, HER2- (FISH) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Chemotherapy AC + T (Taxol) Radiation Therapy 3DCRT: Breast
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May 14, 2021 05:07AM KBL wrote:

Mel, I agree with Booboo. Please ask for help. You deserve to have peace and happiness. I am wrapping my arms around you from afar. You have given so much to this forum, and I want nothing but peace for you.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/23/2019 Femara (letrozole) Targeted Therapy 6/23/2019 Ibrance (palbociclib)
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May 14, 2021 05:29AM GoldensRBest wrote:

Mel - I echo booboo’s suggestion. There are different types of depression and yours certainly sounds situational, given a shitty disease and back to back losses of beloved fur kids. The best treatment is working with a therapist and using meds. There are lots of different depression meds and some will work for you and some won’t. (The same is true for therapists!). The problem is all of them take some time to know if they are working. If you have side effects, a different med can be tried. But we don’t like to see you suffering. We love you and want you to find some peace and calmness in your life. I have been on depression meds since the birth of our 2nd, and she will be 34 this year. I’ve needed to amp things up when we have had certain crises in our lives. That was especially true when I was dx with MBC. I have been fortunate to have only needed to change drugs 3x in all those years. In the early years, I tried to wean myself off, and my husband could always tell within a couple weeks that I was not taking my meds as necessary. I’ve learned that I need the meds to function normally. And I’m grateful that they have changed so much from the meds used in the 60’ and 70’s that left you in lala land. Bottom line - please take care of yourselfMedicating

Dx 6/1990, IDC, Right, 2cm, Stage IIA, 1/20 nodes, ER+/PR+ Dx 7/1999, IDC, Right, <1cm Dx 7/26/2019, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- (IHC) Hormonal Therapy 9/1/2019 Femara (letrozole) Targeted Therapy 9/25/2019 Ibrance (palbociclib) Hormonal Therapy 1/30/2020 Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy CMF Surgery Mastectomy Surgery Lumpectomy; Lymph node removal Radiation Therapy Whole-breast: Breast, Lymph nodes
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May 14, 2021 05:43AM - edited May 14, 2021 07:12AM by mara51506

Mel, I have to echo what these smart ladies are suggesting about depression and evening things out emotionally. I don't care for the idea of drugs but if you cannot pull out of a persistent gray spell where it feels like nothing is good in the world, a drug could be the answer and does not have to heavy duty to be effective. It does not change what happens but may help to redirect thoughts in another way.

I can relate to persistent depression if I don't sleep enough or walk at the start of the day. The days I exercise upon waking, my mindset is better but the days I do nothing at all or start to obsessively worry about something, my mind goes immediately to I don't want to be here, why choose treatment when I am alone. These are bad thoughts which I have to avoid.

In short, I would really like you to get help to deal with the pain in your life. If it cannot happen through exercise, drugs may not be a bad idea. I don't like anyone feeling close to how my feelings get sometimes.

Edited to add, I like Rosie's suggestion about looking into a rescue possibly to give some of the obvious love that you have to share with people and pets. That kind of thing can help mend a broken heart while still giving tribute to Tag and Deeoghee as well.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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May 14, 2021 05:45AM mara51506 wrote:

Sondra, I hope my government will allow people who rushed out and got AZ to have a second dose as well. Makes no sense to have immunized so many with it to not follow up with a 2nd dose. My DB and SIL both got it last week.

I get my first jab on Monday the 17th. Going to UBER, I was going to take the bus but for at least the way there, I would rather UBER.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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May 14, 2021 05:52AM mara51506 wrote:

I did do a longer walk this morning, went usual route except walked one way up and one way down the side streets and back home. Added 5000 steps instead of the 3000 I usually did. I consider that a good amount and allows for me to take shorter walks to try to hit goal both inside and outside later in the day. Not doing much else, probably just my surveys etc. We are locked down now extended to June.


2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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May 14, 2021 05:56AM RosieRed wrote:

Mel - I’m sorry that you are in such a funk. I know you miss your sweet puppies. I read in USA Today that there are a lot of people that are giving up the puppies, now dogs, because they adopted them during the height of COVID and now are going back to work and school and can’t take care of them anymore. Makes me sad that some people think of pets as something disposable. Those animals loved their humans with all their heart and now miss them terribly while they wait in a shelter for a new home.

I know you said that you weren’t thinking about getting another dog, but maybe there is one out there now that needs you as much as you need them. There is just something about having to take care of something or someone else that just makes us get up and move and not think too much about what is going on with ourselves. Of course they would never ever replace Tag or Deoghee (sp?). They had their own uniqueness that you will always cherish. But a new fur baby with their own quirks might be a lot of fun to experience.

Dx 5/9/2018, LCIS/DCIS, Both breasts, 6cm+, Stage IIA, Grade 2, 8/9 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 6/14/2018 AC + T (Taxol) Surgery 11/14/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 12/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/8/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 10/1/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 2/9/2021, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 2/21/2021 Faslodex (fulvestrant) Targeted Therapy 2/21/2021 Ibrance (palbociclib)
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May 14, 2021 06:02AM candy-678 wrote:

Mel- Thinking of you. Talk to your Palliative Care team. Maybe they can help. I want you to feel better.

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. Also using Xgeva injections for bone mets Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Chemotherapy AC Surgery Lymph node removal: Sentinel; Mastectomy: Left
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May 14, 2021 06:39AM candy-678 wrote:

Moth- Any news on your scans??

Intolight- Your scan results??

emac- How about your results??

Just wondering about our pocket duty list and the ones on it.

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. Also using Xgeva injections for bone mets Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Chemotherapy AC Surgery Lymph node removal: Sentinel; Mastectomy: Left
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May 14, 2021 07:15AM Karenfizedbo15 wrote:

Hard going for you just now Mel...you spend a lot of time supporting others here. Now’s the time to find some help for yourself. I recognised in myself that both I and my husband were about to break emotionally, so found a local cancer charity who offered support counselling on a one to one basis. We’ve both taken advantage of that service and found it very helpful.

Surgery 9/7/2007 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap Dx 4/2018, IDC, Right, Stage IV, metastasized to lungs, 1/17 nodes, ER+/PR+, HER2- Dx 2021, Stage IV, metastasized to bone Chemotherapy 2/4/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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May 14, 2021 08:02AM Micmel wrote:

Thank you ladies. I adore you all for caring. I am on antidepressants we are tweaking them And I think we will slowly get there. I just am raw about my Deeohgee, it will be a month Tuesday and I don’t seem to be dealing well with his death. I want another dog so badly. But feel like I should wait and not have it be impulse emotion buying. That’s not fair to the pup. My DH doesn’t want another. Bing!!! Problem. Immediately. I’m Not strong enough to train a puppy and take care of everything without him. He needs to be wanting to help me . Not willing. Wanting. Or he will end up resenting me for it. I do so want another dog. I realize that’s what’s bothering me. The lack of interaction with my Deeohgee
Everyone has to dance, they just don’t know what song they will get. Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/10/2016 AC Surgery 6/21/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 7/20/2016 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 11/7/2016 Ibrance (palbociclib) Surgery Chemotherapy Chemotherapy Hormonal Therapy Arimidex (anastrozole)
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May 14, 2021 09:01AM mara51506 wrote:

Mel, completely understandable about not having a furry family member underfoot and to walk and love up on. I know if my cats both died, I would most definitely want at least one more. It never took me long to bring in another furry friend, not as a replacement, just someone else to love. None of my cats have been similar to each other either. Tigger is only similar to our old cat Marmalade due to his extra front toes. Looks like he is wearing mittens. I would always need someone else with me to pet and cuddle with.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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May 14, 2021 10:41AM candy-678 wrote:

Cross posting---

Change of plans for now--- I was to see my MO Monday to discuss the liver biopsy/ Tempus results. I called Tempus this morning--- report not done and will not be done until mid week next week. So I messaged MO nurse. Cancelled Monday's MO appt and will do a televisit when Tempus results released.

Next scans due in June anyway--- no date set yet. But just feeling anxious-- if things are changing and we are slow to respond and change treatments and allowing the cancer to possibly grow.

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. Also using Xgeva injections for bone mets Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Chemotherapy AC Surgery Lymph node removal: Sentinel; Mastectomy: Left
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May 14, 2021 11:07AM runor wrote:

Candy - waiting is inhumane. Maybe you have a better grip on your thoughts than I do, but my mind went to dark places, as you all know. I am sorry for the waiting and know how excruciating it is.

Mel, as I've said before, I am alone for many hours everyday. Monday i picked up garbage twice after bear got into it. Second time he was still rummaging around when I arrived shouting and waving. I always hope the dog would act as an early warning system. We live in forest. When i walk out i look up, into trees for cubs. If no cubs, safe to go out. Cubs in trees, do Not remain outside because mom is close. Mom bear will whoop my ass! I would feel very intimidated by my surroundings if not for the dog. It should be noted that dog never alerted me to the bears and I lock him indoors if I have to venture into a bear situation, to keep him safe from harm. This is faulty thinking, but hes much less of a warrior than our last dog. Last dog was like Gladiator and current dog is more Mr. Bean. But I totally understand the companion aspect a dog provides and can imagine the loss. But I agree with everyone else who have encouraged you to talk to someone. Too much suffering is...too much. Hugs.


Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/4/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 14, 2021 11:27AM moth wrote:

Hi candy, oh sorry your genomic results are delayed. It's frustrating when we're in the waiting game. Hang in there

My results - so my scans were right after an MO visit, and my next one isn't till 3 weeks later. My regular MO would have called me with results but this locum said "I'll call you if there's a problem" .. & I decided to try to roll with it & try to let go of things a bit. My respirologist saw the ct results and told me over the phone that liver spots were continuing to shrink and the pneumonitis looked same but there might a new spot on the lung to watch? but he's not an onc & was literally just summarizing the "impressions" from the ct report. My MO appt is this Monday so I'll get the full scoop then & have just been sort of assuming everything is ok for now.

The dog thing hits me so hard. I mentioned before I had a whole list of dogs I wanted & a plan for when & how many I'd have at various stages in the next decades... now it's all gone. I don't know if my dh will want dogs after I'm gone. He & dd will look after mine now (ds is a total cat guy - we had a cat that we adopted when he was 1 and she was with us till he was 16. If I got a cat now he would totally take care of it after.), but I don't feel I can add more. Otoh, my 'heart dogs' are setters & I've always said I'd take any setter in rescue near me. Fortunately for me they're super rare here or I'd be overrun. Husky/malamute/shep crosses are my 2nd rank heart dogs and those are alas very plentiful so I could easily fill my house. But I really shouldn't....

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: https://nevertellmetheodds2017.tumblr.com/

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 2/13/2018 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 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
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May 14, 2021 12:16PM runor wrote:

Moth - are you saying that your oncologist reads pathology reports and makes conclusions from them? When I asked my onc what he felt the pathology report on my D&C was saying he said he wasn't an expert in deciphering pathology reports and I thought...what?....wait a minute... you are the guy deciding what treatment I get for cancer yet you tell me you don't decipher pathology reports? I thought this was rather odd. So I noticed when you said your onc would be looking at the pathology report to make a decision. My onc even deferred the choice to stay on or go off tamoxifen to the gynecologist. I am feeling a bit confused over who is supposed to be deciding what. I thought oncologists should be experts or at least very well versed in reading a path report to make a conclusion. Maybe I am wrong?

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/4/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 14, 2021 01:16PM Karenfizedbo15 wrote:

Mel, have you thought about sharing a pup? We do that with our friend Nuala. It means we have the very lovable Fionn a couple of nights a week and during the working day for three days. Works brilliantly as I can’t commit health wise to a full time pup and Nuala needs the doggy care. Fionn has had that arrangement from a tiny pup so he’s well used to it. There must be people in your area who are heading back to work in offices etc. and would love someone like you to help them out?





Surgery 9/7/2007 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap Dx 4/2018, IDC, Right, Stage IV, metastasized to lungs, 1/17 nodes, ER+/PR+, HER2- Dx 2021, Stage IV, metastasized to bone Chemotherapy 2/4/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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May 14, 2021 03:12PM moth wrote:

runor - to be clear I'm talking about my diagnostic radiology report, not a path report. All my MOs & ROs review images themselves as well as the report & my primary MO shows me the images but I'm not sure that she would mess around with looking at pathology slides. That's a whole different level, when you get into microbi, kwim?

I think the issue for you is that you don't have a gyne cancer. So I think your oncologist is staying in their lane and saying I've rx'd tamoxifen, your gyne will sort out what needs to be done about the uterus (as I understand it ~50% of women on tamox will have abnormal uterine bleeding; if biopsy benign then it's managed with monitoring, or an IUD, or a hysterectomy). If the gyne strongly recommends against this med for whatever reason, then your MO would need to discuss with you (or have an inter-disciplinary meet)

Also as far as your MO talking about "what's next", there are studies indicate extending hormone treatment to 10 years is beneficial for some women. Some do 5 tamox then 5 AI but if you're not post menopause yet, it might mean more tamoxifen. Or not. But that's a decision to be made, as well as what sort of screening intervals and whether to bounce you back to GPs care (which is what happened to me when I finished rads because I was not on hormonal tx since I was TN)

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: https://nevertellmetheodds2017.tumblr.com/

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 2/13/2018 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 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
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May 15, 2021 04:40AM - edited May 15, 2021 04:52AM by mara51506

Well, quiet day here. Going to keep myself busy washing blankets. Going to use washing wand and spinners for smaller ones and then use the actual laundry facilities for the larger ones. May take the day but that is fine. My arms can get a nice workout in the meantime. After that's done, might walk a couple of times, looks to be a nice day again.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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May 15, 2021 05:19AM booboo1 wrote:

Mel,

I am in the same place with regard to getting another pup after Huey Lewis passed. My heart is still broken over him, but each day I remind myself that we gave him a wonderful life after rescue, and he lived it to the fullest. So did your boys. We are not sure yet about getting another. We will NOT be able to handle another puppy....we are looking at rescues that are 5-6 years old. Maybe you could look (online) at the various shelters (or rescue orgs) in your area and see if your next furry baby is there waiting for you. I want to see and hear the joy in back in your life when you get another one. I firmly believe this is an answer for you, and depression will lift once you have something to focus on.

Karen,

The picture of you and your pup is precious. Your deck and backyard area look magical. Love the setting!

Mara,

Have I told you lately how impressed I am at your work ethic? You are always moving, and I think that’s why you can ward off depression so well. Hugs to you.


Laurie (aka Booboo) Surgery 5/15/2013 Lumpectomy: Left; Lymph node removal: Sentinel Dx 1/2017, DCIS, Left, 1cm, Stage 0, metastasized to bone/liver, Grade 2, 1/4 nodes, ER+/PR+, HER2- (FISH) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Chemotherapy AC + T (Taxol) Radiation Therapy 3DCRT: Breast
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May 15, 2021 06:17AM illimae wrote:

Well, we’re going to attempt another cabin trip. DH is picking up a trailer, we’ll pack it today and leave tomorrow. Hoping nothing goes wrong this time (last time a seal busted on the truck and DH had to come back). The plan is to spend the week, unload and maybe get a little wall insulation done.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 15, 2021 06:20AM - edited May 15, 2021 08:34AM by mara51506

Thank you Laurie, it is easy for me to find stuff to do since I am single and no kids to deal with. No job either. I will say pulling out all the different spinners, heating rack and hoisting wet blankets into a spinner is a workout but good. I could have just taken them to the laundry here but I will save that for the largest blankets. Like i say, this is good for my arms, strength training lifting and setting things up. I will probably go for a walk later as well. I hope you are well too, hugging you right back.

Edited to add I got 5 blankets and pillow case done, each spun twice and they dried quickly. Taking final 3 to the laundry here and will wash there, use their dryer as well. My goal was to be done before two but I will finish much sooner. Very good lifting exercise for my arms but want to move on to a walk, probably just one with all the work I did today. We will see.




2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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May 15, 2021 08:35AM mara51506 wrote:

Good luck on your trip Mae. In the trucks pocket this time Happy

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+

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