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Topic: Mom has Stage IV and I’m scared

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: Feb 9, 2019 11:23PM

Lindslou wrote:

Hello,

I am 31 (today) and my mom is battling Stage 4 breast cancer (Triple Negative). She was diagnosed January 2017 with triple negative and did chemo and radiation, then had a mastectomy in July 2017 and since then we thought she was NED.

The Tuesday after Thanksgiving we brought my mom into the ER because she had lost weight and couldn't keep anything down and was always tired. We went in and her liver enzymes were elevated and they thought her gallbladder was giving her problems. After a Ct scan we discovered her cancer was back. She was admitted and they ran more tests. We found out her cancer had spread to her lungs, stomach, liver, bones, adrenal glands and brain. She stayed in the hospital 7 days and they started her chemo regiment.

So we went from thinking she was in remission to finding out she had relapsed and it was everywhere.

A month ago she fell walking to the bathroom and her cheek was the size of a softball. After taking her to the ER, she was admitted again because her blood pressure was dangerously low, she had pneumonia, a UTI and was Septic. The chemo stopped during her hospital stay. She's started chemo again (Gemzar and Carboplatin), but missed a cycle last Friday because her WBC count was too low. We go back next Friday. At this point we are just praying she responds. After a month, I was finally brave enough to ask the doctor when her last scan was done. She hasn't had one since August 2017. I broke down crying because I can't believe they wouldn't have done one since then. My sister in law and I went to all her initial appointments, and treatments and surgeries but after they told us she was NED, we trusted that they were doing everything necessary at her follow up appointments. They said her bloodwork was fine, along with her tumor marker and because she wasn't in any pain or hadn't noticed any drastic changes they didn't do any. They said they tell their patients scans aren't done regularly, without a reason. (I'm so upset about all of this...I can't even process it, because I feel like it could've been caught sooner, but at this point there's no going back in time)

My husband, two year old and I have basically moved into my moms home to take care of her. She needs help with everything. Getting up, walking to the bathroom, I cook and administer her meds, and bathe her. My heart breaks at how skinny and weak she's gotten. She looks miserable and it breaks my heart. Four months ago my mom looked happy and healthy. I feel like I'm grieving someone who is still here. I'm terrified because she's so weak. She sleeps most of the day unless I wake her to eat or take her medicine. I am so scared. I constantly check on her to make sure her chest is rising while she's asleep, because I'm so terrified that I'm going to walk in on her not breathing. The hard part is that my mom is so sick that she doesn't even realize the severity of her diagnosis. Although the doctors haven't given us an amount of time, we still worry about how much time is left. My brother is in the Air Force, so I'm pretty much on my own other than when my SIL can come stay a couple of days to help. I'm not even sure what I'm looking for...I guess just some support. I wish I knew how much time I had left with her. I wonder if she'd spend more time awake during the day if she knew that there is no cure to this awful disease. She will say things like "when I get better" and I just nod my head. It just breaks my heart to think that she may not ever be any better than she is right now. Watching someone you love suffer like this is terrible. I can’t imagine life without her, but I also hate seeing her suffer like this. I feel like my days with her are numbered.

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Feb 12, 2019 09:25PM - edited Feb 12, 2019 09:27PM by edwards750

I am so sorry about your Mom. I know you hate to see her suffer and maybe she is in denial or just doesn't want to worry you anymore than she has to. BC is such an insidious disease.

Some doctors do rely on the tumor markers tests to determine if the cancer has spread. If her bloodwork was okay and the tumor markers numbers weren't up they obviously figured there wasn't cause for concern. A friend from my church group found out her cancer had spread from the rise in numbers from the tumor markers tests. They retested her after the first test two weeks later to be sure because other things can cause a change in the numbers.

Idk if her doctors know for sure how much time you will have with her but if you want to have an idea ask them. Some people don't want to know if a loved one has an expiration date because it sounds so insensitive and fatalistic. Unfortunately it's also reality. I would also ask them if you should be honest with her about the severity of her disease.

You are a wonderful and loving daughter. Your mother is lucky to have you. You are doing all you can just being there with her. Our mothers are so independent I'm sure it's really hard on her to have to be so dependent. I know it was hard for my mom.

Take care of yourself too. You are a mother too.

Keep the faith and keep us posted.

Diane


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Feb 12, 2019 10:13PM Shellsatthebeach wrote:

Sorry to hear about your mom. As far as scans, many doctors feel they are not necessary unless you have some kind of symptoms. Both hospitals I'm a patient of (Dana Farber and a university hospital near my home) are of that belief so don't beat yourself up. Cancer is a very sneaky and unpredictable disease. I just wanted to mention hospice is a wonderful resource that can help. It also helps with any pain symptoms your mom may have due to this disease. It's hard to be the sole care taker. I wish you and your mom well.

Dx 3/2017, IDC, Left, 3cm, Stage IIIB, Grade 2, ER+, HER2- Surgery 8/28/2017 Lymph node removal; Mastectomy: Left Dx 9/15/2017, DCIS/IDC, Left, Stage IIIB, Grade 3, 6/10 nodes, ER+/PR+, HER2+ Targeted Therapy 9/24/2017 Herceptin (trastuzumab) Radiation Therapy 10/17/2017 Breast, Lymph nodes, Chest wall Targeted Therapy Perjeta (pertuzumab) Chemotherapy AC + T (Taxotere)
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Feb 20, 2019 03:51PM Birchbark26 wrote:

everything you are feeling is valid. You are in fact grieving for your mother while she is alive and that is normal

I encourage you to contact Hospice. Hospice will help you as well as keep your mom comfortable Your mother’s doctors may be able to guide you in that area.

Please take care of yourself during this difficult time

Dx 7/16/2018, IDC, Right, Stage IV, metastasized to bone/liver/other, ER-/PR-, HER2+ Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy AC + T (Taxol)
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May 31, 2019 07:22PM MexicanMary wrote:

I am in the same place you are right now. My mom WAS in remission for 11 years! then, all of the sudden, a CT showed an almost broken T10. That prompted a landslide of examinations. She has been battling liver cirrosis on Nash (it is a non-alcoholic cirrosis, due to hep) and we were focused on her persistent anemia. So we did not see the sneaky thing come back.

I will tell you that nurture. Food has been a stepping stone for my mom. I have been cooking for a while now and her iron levels are great. Her liver cirrhosis Nash (that is cirrhosis that is not from alcoholism) is under control and right now I am starting with her a diet to help her regain the lost calcium in her T10. I understand that you are in a touch-and-go place as I, like you, often just crawl to her bed and watch attentively to see her chest raise. then sigh in relief when I see that she's only sound asleep.

Keep believing that she WILL get better and it will help you and her. Remember that whatever you believe, it will come to pass. In addition, you project your fears to your mom who receive them unconsciously. I strongly believe that while medicines are very important, you need also to provide the right sustenance to the body to ensure that it has what it needs. I would strongly advice you to get as much organic food as you can possibly acquire.

the USA is known for its in-organic organics. Fruits and vegetables are -i do not know why- less nutritious. I have found that the fruits and vegetables that you have to desinfect because they have "soil" in them (such as spinaches) are far better than the ones you buy at walmart.

I also belive that this is the way to keep your mom with you a longer time. Helping her body be strong enough to endure chemo and radio will be the key to her beating this damn sickness into remission. it is true that once it grabs you it will never let you go, but you can keep it at bay.

My prayers are with you.

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Jun 13, 2019 11:07PM sharmal wrote:

Lindslou, I share your pain and my prayers are for your mom and your family. You have to fight this battle till the end. Your mom need you and you are a proud daughter of her. Show your mom that how much do you love her, sit besides her and spend quality time. May you get many moments of happiness and peace with her in this time. I wish for better days for your mom. Take care and God bless you.

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Jun 14, 2019 12:44PM Hopeful2012 wrote:

Lindslou,

You are such a kind and loving daughter. I am so sorry you have to go through this. Please keep in mind that Hospice is a wonderful resource to use. My father just recently passed away and Hospice was so much help to him and my family. Try and enjoy the good moments that you do have with your Mom.

Take care of yourself too!

Dx 11/2012, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 12/9/2012 Lumpectomy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Chest wall

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