Join Us

We are 224,974 members in 83 forums discussing 163,816 topics.

Help with Abbreviations

Topic: How do you know when it’s nearly time?

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: Jul 21, 2019 10:25AM

AdrianaP wrote:

I hope this makes sense.

I’m currently living in a different country than my family and have been for about 4 years. If all goes according to plan, I’ll be back home in America in about 1.5-2 years.

One of my very close family members has been living with stage IV for about 3 years already. She’s still on her first treatment but it doesn’t seem to be working as well lately (Mets in liver, bones, chest wall).

Of course if things took a horrible turn, I’d get on a plane and go right home. But I don’t want to wait for that point. I want to be able to enjoy her company while she’s still relatively healthy.

I guess my question is...when things start to go downhill, how do you know? How do you estimate how much time there is? Should I be going home now, rather than planning for a year or so from now? I have no indication that she won’t be here in a year, aside from anxiety, but we all know how quickly things can change.

How fast does it happen? :(

Log in to post a reply

Page 1 of 1 (5 results)

Posts 1 - 5 (5 total)

Log in to post a reply

Jul 22, 2019 08:15AM edwards750 wrote:

Adriana - there is no timetable that is completely accurate - only an educated guess. When vital organs shut down obviously it’s only a matter of time. Sounds cold and callous but unfortunately it’s a reality.

Of course you want to be with her in her hour of need but if you can why not visit her ahead of time?

There are multiple cases where people have defied the odds and outlived the predictions. My sister now has Stage IV BC. She lives in another state. She doesn’t want the family there now because she is suffering and enduring horrific chemo treatments. My BIL is taking good care of her. It’s still heartbreaking as I know it is for you.

Only God knows the exact date.

Diane

Log in to post a reply

Jul 22, 2019 05:19PM LoriCA wrote:

Hi Adiana, if she's still on her first line of treatment, she likely still has several more options to try if that is what she wants and could possibly have many more years ahead of her depending on how she responds. We basically stay on a treatment for as long as it works, and when it stops working we move on to the next treatment, rinse and repeat. And just because she may go through rough patches at times, it doesn't necessarily mean the end is near. Stage IV is a rollercoaster for many of us. At one point my family was told that I wouldn't last 60 days, and I'm still here and doing okay 22 months later.

As for how to know when the end is near - my doctor told us that when I stopped eating, lost more than 10% of my bodyweight (I'm not overweight, the percentage may be different for someone who is), and won't or can't get out of bed, any of those would be a very bad warning sign. But each of us is different, sometimes it happens quickly within days and sometimes it drags out for months. Large and growing mets in the vital organs that aren't responding to treatment is the big concern (liver, lungs, brain) because they can cause sudden problems if they can't be controlled. Bone mets are usually easier to control and they (directly) don't kill us, they just cause other problems if the bones start to break.

You said that you want to be able to enjoy her company while she's still relatively healthy, and I can tell you as someone who is Stage IV that is what we want too - to be able to enjoy spending time with our loved ones, not when we're too sick to get off the sofa. When I'm in really bad shape I honestly don't want anyone around and sometimes feel obligated to let people visit with me. It would mean so much more to both of you if you can get together and do something fun that she enjoys while she's still able to, so if there is any way that you can fly back home now I would strongly encourage it.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement 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 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki)
Log in to post a reply

Jul 22, 2019 06:40PM ShetlandPony wrote:

Adriana, I say why put it off? Seize the day. Your sister may be doing well in two years. But I have seen so many times here on BCO women who were doing great go downhill in a few months. There’s no way to know. My sister lives far away, but has budgeted for regular airplane flights to visit. We so love our time together!

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

Jul 23, 2019 05:45PM SandiBeach57 wrote:

LoriCA..that was a great reply. It was what I was thinking, but couldn't find the right words.

Wear your jewelry.
Log in to post a reply

Jul 24, 2019 06:54PM LoriCA wrote:

Thanks SandiBeach, the truth is I am hoping to avoid as many of those "final goodbye" visits as possible. I want people to remember me as laughing and full of life, and it really does mean so much to me when people make time to spend with me now. It's a much needed break from the usual mess of non-stop doctor appointments, scans, treatment, etc.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement 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 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki)

Page 1 of 1 (5 results)