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All TopicsForum: For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis → Topic: Worried about my sweet mom - Need Advice - Stage IV

Topic: Worried about my sweet mom - Need Advice - Stage IV

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 17, 2018 01:01AM - edited Jul 17, 2018 01:23AM by CCampbell2446

CCampbell2446 wrote:

Hello, everyone. My name is Chase. I am a constant follower of this website but have not posted anything until now. I'm 27 years old and live in Atlanta, GA. My 59 year old mom, who is the most selfless, caring and sweetest woman in the world is battling stage IV breast cancer. PR+, HR+, HER2-. She got to stage IV 3 & 1/2 years ago after finding a lump in her breast. Anyways, let me fast forward to now. We've been in the hospital for 26 days now. We initially went in after she endured 3 weeks of not being able to walk because of pain in her knees, unable to take pills or eat without vomiting, unable to sleep and etc shortly after taking an oral chemo called affinitor. During the hospital stay so far, so many things have been going on and I have no clue how serious this could be and what to do other than continue to love her unconditionally:

-Prednisone Steroids which relieved some pain from her knees

-2 blood transfusions because of Anemia and her Hemoglobin levels dropping down to 7.0

-Multiple IV bags of potassium, magnesium, iron, etc.

-Her shoulders/upper back/neck were hurting bad for about 4 days

-Horrible stomach cramps, gassy feeling, pain feeling that was off and on for about 5 days. She'd throw up from nausea.

-**Heart rate up around 110-120 resting and 150 when up using restroom. Oxygen levels without oxygen were down to around 85-89 and 94-96 with. She's never shown shortness of breath and has never needed oxygen before. This is still ongoing even after the thoracentesis that was done yesterday 7/15/2018.

-Was unable to eat anything except little bites of food for the first 24 days until they finally put her on marinol, appetite stimulant, which has increased her hunger and allowed her to eat better. praise the Lord!

-3 days of spasms in her left thigh that hurt her so bad and she says feel like a charlie horse (doctors are about to run scans on legs.

-thoracentesis yesterday after CT Angiogram scan. They got around 400cc's? of fluid from her right lung.

-She's very weak and can't really get up to easily to do things.

These are just some of the things that have been going on the past 26 days. 3 days ago they released her to go to a rehab for physical therapy and care but the rehab was so bad that we went home that night to do home health care. During the short time we were home without an oxygen tank, we had to get an ambulance to come pick her up and go back to hospital because her O2 levels were down to 81-83 which I knew was scary low from watching the nurses every day.

I am just so curious if anyone can shed some light on this or give me advice in any way. I haven't worked in 3 weeks because I can't leave my mom's side and have been doing anything in the world to keep her comfortable. She's my rock, my best friend on this earth and she's done everything in the world for me. We were about to try some holistic things before going in (budwig diet, baking soda, apricot seeds, cbd oil), but her being unable to swallow because of ulcers the week before being in the hospital prevented us from doing so.

The oncologist has said that she's not in a critical state and that the new Faslodex and Xgeva medicines will hopefully start to do work on her tumors? She said if the medicine doesn't work she has around 3-6 months to live, but if it does, maybe 1-2 years. Her breast cancer has spread to her lungs/liver/bones/skull but not her brain or abdomen or other organs. They've run several MRI's and PET scans. I just don't know how to feel. Watching her go through all of this pain and confusion is the worst thing I could've ever imagined. 6 weeks ago she was working, driving, walking and living a pain free life. On top of this, my 32 year old brother was just put in jail for drugs, he's been battling the worst addiction for years. Haven't told her about this and she hasn't asked, probably too afraid. What can I do to give this sweet woman a chance at life and to have more time. Is the Faslodex enough? She's afraid of chemo but trusts me and will listen to me about anything. My father is very supportive but is an emotional wreck so I am the main care taker. It's so hard but I'll do anything in this world for her. Thank you so so so much for taking the time to read all of this and I would love to hear back from you. God bless you all.

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Jul 17, 2018 11:34AM ChuckL wrote:

I'm so sorry I have no advice. I'm bumping this to the top so hopefully someone can offer advice. I can offer support. I'm thinking of you guys and hoping so very hard Faslodex will work. I'm so incredibly glad she has you, but take care of yourself as well. I'm not a caregiver but I've heard it can be draining.

relative with stage IV de novo April 2016, ER/PR+ mets to bone
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Jul 17, 2018 03:23PM CCampbell2446 wrote:

Update 7/17 - ChuckL, thank you so much for your response, this is so terrifying and hard. They did another chest x ray and 2 blood cultures this morning. She has a UTI that they’re starting antibiotics for. They also ran a lactate test on her thinking that she might be having sepsis, but her levels came back normal. Praise the Lord. Her O2 levels get very low and her heart rate is getting very high when she gets up. Please continue to offer any advice possible. God bless

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Jul 17, 2018 05:42PM edwards750 wrote:

OMG Chase I am so sorry for your Mom and you. You are such a loving daughter.

Your mother has literally been through hell and back. No one should have to endure what she’s going through. It sounds like her medical team is trying to get her situation under control. That’s very difficult when you don’t know for sure how she will react to medication. That doesn’t help when she is suffering so and I know that breaks your heart and her spirit.

BC is an insidious disease. Unfortunately researchers still don’t have solutions for cause and effect.

You are doing all you can. Being there for her is the most important thing. I know the side effects for your Mom are sheer torture for you and her but you have to rely on the expertise of her medical team. You are her advocate though so definitely report anything they need to know about your Mom.

Definitely don’t tell her about your brother. The last thing she needs is to stress/worry about something else. I’m sorry he is dealing with an addiction.

I’m also sure this is really tough on your dad too. She is his soul mate.

It’s times like this you feel so helpless but try and keep the faith and keep us posted.

Diane
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Aug 9, 2018 10:27PM Kcan wrote:

Dearest ccampbell,

I know this post is from July, I just wanted to chime in if you happen to check.

I am so incredibly sorry that you and your sweet mom have to go through this disgusting and cruel disease. You are a wonderful daughter and truly a best friend.

Your unconditional love is amazing and you do so much for your mom. I Know you feel helpless but you are THERE and that in itself provides your mom with strength.

You are not alone at all. My beautiful mom is sick with stage iv tnbc and this disease has been relentless. The pain and fear often takes my breath away and I get so angry.

Currently my mom is taking Rick Simpson oil along with other herbal therapies provided by our naturopath oncologist. I think this helps with some pain management.

If you ever want to talk or vent or anything I am always here. Take care miss. I am praying for you and your mom, sending you light and gentle hugs.

Katherine

Dx 6/8/2016, IDC, Right, 2cm, Stage IV, metastasized to lungs, Grade 3, 2/19 nodes, ER-/PR-, HER2-

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