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Topic: My mom’s stage IV is breaking my heart

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 26, 2019 02:08PM

janeyy wrote:

Absolutely no clue if this is the right thread or topic to write to, but I'll give it a go. I've been reading posts in this forum for almost two years; never posted anything but have found strength and hope in other's posts. now I felt the neee to write a few words.

To summarise: My mother has stage IIIV Breast cancer, with bone mets. Diagnosed right off the bat two years ago, the doctors found it by coincidence. She's been in fantastic condition for 98% of the time. She's in her 50s, very active. The last month or so however, has been horrendous. They have found mets in her liver and she has been hospitalised and very ill for weeks.

She's on taxol now, and have had two rounds of it so far, but is reacting terribly to it. Very sore throat and mouth, fatigue and she struggles with lots of Ascites in her stomach. She's had taxol before (months ago) and didn't feel a thing then, so this is new. I'm scared they might need to take her off it.

Would mean a lot to me if anyone has any experience with this or any advise to give on this. I don’t want to be naive, but I am desperately looking for any happy stories or anything that could remind me that it’s not over until it’s over.

- Concerned daughter (24)

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Feb 26, 2019 02:27PM Moderators wrote:

Hi Janeyy, and welcome to Breastcancer.org,

We're so very sorry to hear of your mom's diagnosis, and for the downturn she has taken. We're sure others will be by soon to weigh in with their advice and support, but we wanted to let you know we're thinking of you both!

We hope you find answers, and that your mom gets some comfort soon.

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 14, 2019 01:54AM marylaf wrote:

Hi, I also have stage 4 metastatic cancer which has spread to my bones and one lung. I was diagnosed with stage 4 since June, 2015. I was initially diagnosed with stage III in 2008. My partner died of lung cancer in April, 2018. This last year has been hell. especially with loss of appetite, weight loss, etc etc. But the greatest heartache for me is my daughter, who seems unable to express concern or caring other than in a very superficial way. (We live 1200 km apart) I am so happy to hear that you are not afraid and are there for your mother... that is worth a million dollars and will do more than any treatment. I was on Taxol twice. LIke your mother, I was put on it again as soon as it was realized that my cancer had progressed. When that stopped working I was switched to a new drug which has been working for about a year or more. So I have been alive with breast ca for 11 years so far. In the last few months, I am having symptoms that are not encouraging... weight loss big time, no appetite, endless fatigue, hours of sleeping each day, etc. Each time this downturn occurs, I get scared... so far a different drug (always at least part chemo) brings me back. Each time there is a downturn I thing OMG I am going to die! I am not afraid of death I say, but when I think I might be dying darn right I feel fear of the unknown!

Your mother could live for years, months or days. You are correct in saying "it is not over until it is over". I completely understand about broken hearts and amazingly still do laugh, socialize and carry on. Night is worse: when alone I cry frequently, hoping that somehow my daughter and I will reunite before it is too late.

It is amazing how much (in a positive note) I have learned about joy, love and giving since. Out of the chaos of pain, fear, suffering, arises a sense of joy in knowing that I am never without my partner, who is now in a different place without pain and suffering. The same will be true for my daughter, who unfortunately will need to go through her own loss, in a way that will be unmatched by yours. Your mother is lucky to have you as a daughter!

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Mar 14, 2019 10:02PM edwards750 wrote:

So sorry about your mom. It truly isn’t over until it’s over so try and keep the faith even if you think it’s futile. Your mother is clearly suffering. BC is such an insidious disease and frankly epidemic.

I don’t have Stage IV so I can’t relate to the Mets or meds but I do know ladies who are. One in particular has had to change meds multiple times. Not everyone has the same side effects. BC is not a one size, fits all disease so doctors have to keep trying meds, etc until they find one the patient can tolerate.

You are such a sweet and loving daughter. Your mother is blessed to have you. I know you are scared that’s understandable. Just continue to be there for her. That’s so important.

marylaf - so sorry for you too. Hopefully your daughter will wake up before it’s too late.

Diane

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Mar 15, 2019 11:10AM santabarbarian wrote:

Many women live very well with MBC for years. I have had several friends in this situation. One was diagnosed stage 4 de novo, and lived extremely well for about 6 years and then got sicker, and passed away. The other two are still hanging in there, and one of them is swimming in the ocean every morning and looks like the most vigorous, healthy person you could imagine. If your mom finds a treatment that works this can be her.

Look into hyperthermia (heat) for liver mets. There is a dept of hyperthermia at U Maryland in Baltimore and I got the head guy to answer my questions... he was VERY nice. Also at Wash U St Louis, and at Cleveland Clinic... maybe there are others but these three offer it for sure. It can be very effective against un-resectable tumors, and it spares your healthy cells.

pCR after neoadjuvant chemo Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Mar 15, 2019 12:41PM - edited Mar 15, 2019 12:44PM by SandiBeach57

Hello Janeyy. I am writing to give you and your mom support. You have not posted recently, so I do not know if your mom is responding to her current treatment.

I was diagnosed In the Fall of 2016 with widespread liver mets. (I had DCIS in 2006 and again, 2007.)

The tumor cells had traveled to my lung arterioles and I could not breath and was hospitalized for 21 days. Adriamycin and Cytoxan stabilized the disease and I started Ibrance/ Letrozole Jan 2017. AC was rough, but your mom sounds like she was in good health prior to taxol.

I continue to be stable. Tumor markers, liver enzymes and scans show no new growth. I live a good life.

Don't give up yet, okay? We all respond differently and there is no reason why your mom can't enjoy a wonderful life with her ongoing treatments.

2006 and 2007 DCIS ER+PR+, Oct 2016 Stage IV widespread liver mets, IDC, ER+PR-HER2-. Oct 2016 AC. Jan 2017 Letrozole/Ibrance
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Mar 15, 2019 06:41PM - edited Mar 15, 2019 06:43PM by janeyy

Hi and thanks for all your replies. Sorry I've been slow to reply.

Marylaf, your message really got to me. I'm so sorry to hear your daughter isn't capable of being there for you in the way you need her to be. I really really hope for the both of you that you find a way to work things out. You seem like you've been through a lot of ups and downs with this illness, and I admire your strength. The fact that you've been dealing with this for 11 years is incredibly impressive, and gives me the slightest, tiniest feeling that maybe all hope isn't lost for my family just yet. I can understand how your daughter is probably trying to deal with the overwhelming situation you're both in, and I hope she steps up soon. Thank you so much for writing to me.

Edwards750, thank you so much for your kind words. It means a lot to hear, and thank you for your optimism and motivation. I'll never give up hope.

Santabarbar, thanks for your uplifting reply, not to mention your suggestions of looking into hyperthermia. I will definitely ask around where and when I can. However, we are in Norway, and not the US, but they might have something like that over here? I'll ask about it anyway. Thank you so much for your reply.

SandiBeach5. Thanks for your reply! She's been taken off Taxol for the time being, in an effort to get her back on her feet. She's not had Taxol for three weeks, and no other treatment either, because she reacted so badly to it. She's still hospitalized, but feeling better than she did when I wrote this post. She's eating more or less like normal, and is motivated to get back on her feet. The docs say they can't give her more chemo until she's feeling better. Although I hope to never see her as ill as she was a few weeks back, I'm so so worried for her because she's not getting any chemo at all at the moment. Everything about this situation is so scary. I've taken note of the meds you've mentioned in your reply, and I'll ask about them next time I see the doctor. Thank you for giving me hope, it's very much needed these days.

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