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Help with Abbreviations

Topic: Help Mom with tx options

Forum: For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Jul 8, 2019 07:48PM

BoyMom1 wrote:

My mom was dx in 2015 with bone mets. She has done well the last few years. She’s taken femara, afinitor, faslodex, and now Verzenio. Tumor makers started to slowly rise last fall and she had scans every three months. All have been clear. She began to feel tired and have stomach pains about a month ago. Scans in late June were still clear. She did have some fluid build up in her abdomen so dr recommended she have it drained for comfort. Fluid was tested and showed cancer. Dr wants to start chemo navelbine asap. Mom is very upset about this news and being told navelbine is only option. She doesnt seem intersted in second opinion and sees this as “the end.” I want to be an encouragement to her, but I am so scared and confused. Does anyone have any advice or experience with this? Is Mom right? Or should I encourage her to get second opinion and that things will get better?

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Jul 9, 2019 01:50PM edwards750 wrote:

Bless your heart what an awesome son you are. I’m so sorry your mom is going through this. Idk if things will get better with a second opinion but it never hurts to get one.

My sister was just DX with metastatic breast cancer to the stomach. It’s very rare. She has to have 4 chemo treatments but Idk if it’s the same thing being recommended for your mother. What I do know is she had no choice. Whether it’s the beginning of the end remains to be seen but apparently her doctor thinks the treatment is mandatory. Maybe you could talk to him about your Mom’s concerns. I’m sure you both are scared. She has to trust her doctor is recommending the best treatment for her. If she doesn’t time for a second opinion.

Hang in there. Keep us posted.

Diane

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Jul 10, 2019 11:08AM LoriCA wrote:

I understand how scary it could be when the oncologist says it is time to move on from hormone/endocrine therapy to IV chemo, ER+ women hope to avoid that transition for as long as possible because they see it as a bad sign. As someone who has been on IV chemo (and targeted therapy) right from the start I want to reassure you and your mom that it absolutely does not necessarily mean she is nearing the end. I have to qualify that statement because it depends on if her cancer responds to the chemo. If she responds well it will relieve her symptoms (pain and fatigue) and improve her quality of life, and that is what treatment should be all about. I live a full, active life and if you met me in person you would never guess that I've basically been hooked up to an IV pole for almost two years now because I am fit, strong, and healthy. Sure I go through some rough patches, but on the whole my life is good and I'm in better shape than many supposedly "healthy" people are. Each of us responds differently to the different chemo drugs as far as side effects, but many women here have said that navelbine was fairly easy for them to tolerate. If navelbine doesn't work or the side effects are too harsh for her, there are many other chemo drugs to try. There are even oral chemo drugs such as capecitabine (Xeloda) that don't require spending time in an infusion center. It might turn out that after getting the cancer (and her symptoms) under control again with chemo, maybe then her doctor would let her again try one of the hormone therapies she had in the past.

It's always good to get a second opinion when you're not comfortable with your doctor's recommendation, but it seems to me that the bigger concern is that your mom is afraid that moving from hormone/endocrine therapy to IV chemo is a sign that she's nearing the end. It doesn't necessarily mean so, and I hope she can come to understand that she can still have many years of good life ahead of her if she responds well to the chemo.

I wish you both the best getting through this difficult time, and I hope you both understand that moving on to IV chemo does not automatically mean that the end is near.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Jul 10, 2019 01:53PM ShetlandPony wrote:

To reinforce what Lori says, I look at all the various therapies as weapons in my arsenal or tools in my toolbox, and that my onc and I choose which one according to the current situation. As you can see below, I have done an IV chemo, three anti-estrogens, two targeted therapies, and a pill chemo. None have been horrible for me.

The goal is the best quantity of life along with the best quality of life. I hope your mom can talk to her doctors and nurses about her concerns and her priorities. I don’t like to hear there is only one treatment option without an explanation as to why.

Are you right or is your mom right? The answer is unknown and it could be something in the middle. Nobody can say how anyone will actually do, not even the doctor. All we know is what is statistically likely, but we are not statistics, we are individuals.

By the way, there is a difference between cancer in the stomach and cancer in the abdominal fluid.

Best wishes to both of you.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Jul 10, 2019 02:45PM jensgotthis wrote:

I always advocate for a second opinion when contemplating big treatment change or if dealing with progression. A good MO should welcome that.

Dx 12/3/2015, IDC: Tubular, Left, 2cm, Stage IV, metastasized to bone, Grade 1, 0/12 nodes, ER+/PR+, HER2- Chemotherapy 1/4/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/1/2016 External: Bone Hormonal Therapy 5/23/2016 Surgery 5/25/2016 Lymph node removal: Left; Mastectomy: Left Targeted Therapy 9/14/2016 Ibrance (palbociclib) Hormonal Therapy 9/14/2016 Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy
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Jul 10, 2019 07:52PM BoyMom1 wrote:

Thank you all so much! Your replies are very encouraging to me. I have been so upset and confused. But I think it is largely in part to not being able to go with her to discuss with dr. I have a lot of questions. Has he tested the fluid to see if cancer has changed? Why is he recommending iv chemo? Can she go back to other tx if chemo is successful? Will this iv chemo be used monthly until there is more progression or is it temporary? Why is he against trying ibrance? (I thought there were more drug choices before resorting to iv chemo) I’m assuming cancer in abdominal fluid is different than stomach mets? Is it better or worse or just different? I hope to find answers.

I believe Mom is most upset about having to go back to iv chemo because she had it in 2004 at original dx. She never wanted to do it again. She’s upset about the port. She’s upset about loosing her hair. And she’s upset about the fatigue. She’s afraid she will never feel well again. She doesn’t want to live life on the couch or in bed. I’ve told her that it doesn’t have to be that way. I’m hoping she’s will respond well to the chemo and be back to her active lifestyle soon. Then she can get back to being positive about things. She’s just overwhelmed with all the changes right now.

Again, thank you so much for the replies. Her first navelbine tx is tomorrow.

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Jul 10, 2019 09:37PM ShetlandPony wrote:

Yes, abdominal fluid is different from stomach mets. The onc may want to use IV chemo to get control and get your mom to a better condition, then go back to endocrine and targeted therapies. Or he may believe that chemo will work better now because of how the cancer is behaving. Yes, a biopsy or testing of fluid should be done at progression to see if the markers for ER, PR, and Her2 have changed. Please tell your mom that in general the chemo they use for early stage (like she had in 2004 with no metastasis, right?) is much tougher to experience than the chemo they use for metastatic/stage iv. It probably will be easier on her. That’s because stage iv is a marathon, not a sprint. Quality of life. She might ask if there is an oncology nurse navigator available to your mom to support her and explain things more than her onc can do in office visits.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD

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