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Topic: is there a reference somewhere how MBC progresses?

Forum: Caring for Someone with Stage IV or Mets —

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: Sep 27, 2020 05:42PM

PoppyFlower wrote:

I feel anxious about how MBC is progressing or not progressing on my patient (She's not technically my 'patient' but I'm using a generic term just in case she's on this website's forum)

Nothing is really improving except she's back on Palbociclib for the second cycle after her MO took her off after her WBC went down too low and she ended up with a lung infection. So the fact that she's back on Palbociclib, I guess her immune system is back to "normal" but her other symptoms are getting worse. She can't do so many things she used to be able to do even from last week.

She doesn't want to know her prognosis so it's so hard to tell how she's doing, medically.

Is there a reference where I can research for a better understanding or does that not exist?


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Sep 28, 2020 03:52AM bcincolorado wrote:

In the main section there is a lot of information in there that might be helpful to read through if you have not read it.

https://www.breastcancer.org/symptoms/types/recur_metast/treat_metast

Others may know some other places but there is a lot in there in many pages in there.

Best wishes.

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/6/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/14/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/29/2016 Femara (letrozole)
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Sep 28, 2020 03:10PM exbrnxgrl wrote:

poppy,

Are you asking about a pattern for mbc progression? If so, sorry to say there isn’t one. Each of us was diagnosed at different points in our mbc journey and progression is just as individual. There is no timeline. I have had no progression in 9 years but I am an outlier.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Sep 29, 2020 07:02AM PoppyFlower wrote:

I'll check that page. Thx for the link!

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Sep 29, 2020 07:47AM moth wrote:

poppyflower, it's hard to tell though fungating tumor and pulmonary edema are not great signs. But if her cancer starts responding to the palbociclib she could bounce back a bit & just require ongoing symptom management. Does she agree to scans to monitor progression of her cancer and will she let you see the results?

I think reading between the lines on this post & your others, you're still trying to figure out a timeline. I think without any treatment you'd get infections setting in & cancer spreading to vital organs & you'd only have weeks to months. Aggressive iv antibiotics can buy time but severe infections can be fatal quickly if organs start failing.

But if her heart, liver and kidneys are otherwise fine (do you have access to blood test results?) and if infections are kept at bay, and if her cancer really responds to palbociclib, she could carry on for many, many months. Median stage 4 survival is usually given as 3 yrs but I think the stats are based on a population undertaking pretty aggressive treatment

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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Sep 29, 2020 08:01AM PoppyFlower wrote:

I understand progress depends on so many factors. And I salute you for being an outlier! That's amazing...!! Here's to many many more years!

I guess I'm getting antsy because I'm the primary caretaker and she has so many ups and downs that I don't know 'how' to respond to her signs and symptoms. I don't know if I'm being helpful or helplessly optimistic when there is no hope. I get mad at her MO for not being truthful sometimes. If she (her MO) knows, why doesn't she tell her, even if she (Patient) doesn't want to know her true prognosis. I know it's up to the patient to decide what to do at the end of the day but isn't her doctor somewhat responsible for telling her the truth so she doesn't live on false hope? When does she say "it's not working?" She has no quality of life but she thinks she's going to get better. It breaks my heart to see her struggle with the simplest tasks. She's taking higher dose of painkillers now and even her personality seems different.

I'm just frustrated. Sorry for venting when you are doing so well. I didn't mean to be such a Debbie Downer.

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Sep 29, 2020 08:13AM PoppyFlower wrote:

Sigh....."Median stage 4 survival is usually given as 3 yrs but I think the stats are based on a population undertaking pretty aggressive treatment" .....the operative words being "aggressive treatment", which she refused 6 weeks ago and now, she can't do because of her advanced stage.... :( And the fact that they really can't do much for her symptoms that she's suffering with - Lymphedema, Skin lesions, growing masses (visually so I can't imagine what's going on inside), infections (although they did treat the last infection with IV antibiotics) - that limit her quality of life tells me she doesn't have that much time. But she refuses to get ANY scans done to evaluate the progress. No MRI, CT scan or Petscan. Her MO is just relying on blood work, which I don't have access to. And she won't say the therapy doesn't work. She keeps saying Patient has to give it at least 2 cycles.

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Dec 4, 2020 12:40PM peasandcarrots wrote:

Hi moth,

Thank you for sharing and engaging in these conversations. I can't tell you how much they mean to me and probably everyone else in this forum. You seem strong and I wish you nothing but the best.

I noticed that your medical history and latest diagnosis is very similar to my mother's except that there are mets in her bones and liver. I hope you don't mind me asking as this thread's topic is a little different but how do you feel about the effectiveness of immunotherapy? We learned recently that the tumors in her liver have spread quickly (doubled in activity) so she is going back to aggressive chemo before trying immunotherapy. I'm hoping this will help and be the miracle we've been waiting for, though I know a cure is not possible. I'm just really scared.

Thank you and please do not answer if you are not comfortable.

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Dec 4, 2020 01:03PM moth wrote:

peasandcarrots - is your mom triple negative & are her tumors expressing PD-L1? That's really the key to whether there's a chance immunotherapy will work. It also takes time to work - like 12+ weeks often. So depending on how bad things are, some oncologists prefer to hit it hard with chemo. There's a concept called 'visceral crisis' which might be guiding their treatment plans. If an organ is so damaged that it is close to failing, you need chemo to try to get control of the disease, give the organ time to heal and then figure out next steps.

I started atezolizumab + taxol in March & we waited it out; there was a point where my MO was really nervous and already gave me handouts on next chemos to consider as she thought it would not work & my liver values were climbing. I was needing blood and albumin transfusions and I was really quite ill. But we hung on & then got mixed results at 8 week scans, regression in liver at 16 weeks scans. Then regression and another regression until CT showed a small progression in my lung in Oct. Technically I was still stable as my liver mets were continuing to shrink according to the Oct CT so when they added it all up, my tumor load didn't count as progression but the fact that the lung met is growing is not a good sign.

So a bit over 7 months of 'good' results. Honestly I would not be really surprised though if we saw a progression in my liver soon. Median PFS in Impassion 130 (the study assessing atezolizumab + abraxane) was 7.5 months for those who were PD-L1 positive. Some people have really long durable responses but for others, the tumors develop resistance and that immunotherapy stops working. I'm hoping to somehow access keytruda or trodelvy when atezolizumab fails, but I'll need a trial as these meds are not avail in my province at the moment.

For triple negs, immunotherapy is all we have, other than a handful of chemos. If you can try it, I'd definitely say it's 'worth' it because honestly, for us, it's the only hope for slightly increased OS.

hth!

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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Dec 4, 2020 03:35PM illimae wrote:

Poppy, can you talk to her doctor by appointment or message for more specifics with her situation? Research is great but might not be as helpful as a direct conversation. Just a thought.

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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Dec 4, 2020 03:50PM moth wrote:

illimae- Sadly, Poppy's relative recently passed. She posted an update in a different thread. It got bumped by peasandcarrots & then me answering her

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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