Breast cancer spread to liver, skull, spine, ribs, hips etc.

Posted by susane1121 @susane1121, Nov 23, 2022

Anyone experience similar?Seeking any advice that can help us get through this. She started with an injection called fulvestrant. I will be getting another injection starting next month I’m taking a ribociclib.
Thank you

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@jbp

Kris,
Wow, it is really great to hear from someone who is on the same treatment plan and know that it has been working for 2 years. Thanks for reaching out. I am on 150 mgs twice a day. My neutrophil count has dropped twice so I was taken off the med for a few days....more labwork showed it went back up so back on the medication again. I really don't have any major issues with other side effects at this point. Curious to know what side effects have caused your wife's dosage to be lowered. It's great you are there for your wife. I would be lost without the support of my husband. Hope the good days continue for you both.

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J,
Jenny's side effects were vomiting and very severe diarrhea. She was taken off of the Verzenio several times for just a week to get the side effects under control, at one point it was dropped to 100mg twice a day, then eventually to 50mg twice a day, 50 is the lowest dosage they make of Verzenio. She gets it through the mail, they sent 6 boxes of imodium with her first order, at first we thought that was an excessive amount, we quickly became thankful that they did.
Kris

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@catlady7

Good morning, @susanne1121 .

I was diagnosed with stage 4 metastatic breast cancer this past September. I have metastasis to my skull, spine, ribs and pelvis. I also have a lesion on my liver.

This is all new to me, too. May I ask what symptoms you are having? Other than the usual pain, I am having urinary incontinence. Ugh. 🙈😩 However, a lady in another group here suggested a device that may well help me control it!

I’m taking letrozole and Ibrance.

I’m so grateful for this discussion site. Happy Thanksgiving!

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Hello

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@sam2020

J,
Jenny's side effects were vomiting and very severe diarrhea. She was taken off of the Verzenio several times for just a week to get the side effects under control, at one point it was dropped to 100mg twice a day, then eventually to 50mg twice a day, 50 is the lowest dosage they make of Verzenio. She gets it through the mail, they sent 6 boxes of imodium with her first order, at first we thought that was an excessive amount, we quickly became thankful that they did.
Kris

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In 2019, The Deputy of Health issued a safety warning for this drug due to damage to the lungs in several patients who took this drug
Google Verznio and Japan to see a report of a safety warning in Japan after several patients had lung damage after taking this drug. It was reported in 2019.
Always research warnings about drugs before agreeing to take them.

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@cgraft

In 2019, The Deputy of Health issued a safety warning for this drug due to damage to the lungs in several patients who took this drug
Google Verznio and Japan to see a report of a safety warning in Japan after several patients had lung damage after taking this drug. It was reported in 2019.
Always research warnings about drugs before agreeing to take them.

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Thank you for the info.

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@polianad22

Thank you for the info.

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You are welcome.

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@cgraft

In 2019, The Deputy of Health issued a safety warning for this drug due to damage to the lungs in several patients who took this drug
Google Verznio and Japan to see a report of a safety warning in Japan after several patients had lung damage after taking this drug. It was reported in 2019.
Always research warnings about drugs before agreeing to take them.

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cgraft,
I agree, any drug recommendation by a doctor should be researched before agreeing to take something. I've never seen any medication-prescription or OTC, that doesn't have a side effect, and unfortunately, some do have life threatening warnings.
Please keep in mind that regardless of how much research you do on each treatment plan that is available, there are many factors to take into consideration, such as stage of cancer, hormone status, and oncologist recommended treatment plan based on his or her professional experience. Our Oncologist was highly recommended by many of his peers.
I do not know your situation, but what I do know is that faced with stage IV cancer that is not curable, but treatable, your treatment options may be limited. My wife chose to take a drug that may or may not be harmful, but it was a better option that not taking anything at all.
Kris

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@sam2020

cgraft,
I agree, any drug recommendation by a doctor should be researched before agreeing to take something. I've never seen any medication-prescription or OTC, that doesn't have a side effect, and unfortunately, some do have life threatening warnings.
Please keep in mind that regardless of how much research you do on each treatment plan that is available, there are many factors to take into consideration, such as stage of cancer, hormone status, and oncologist recommended treatment plan based on his or her professional experience. Our Oncologist was highly recommended by many of his peers.
I do not know your situation, but what I do know is that faced with stage IV cancer that is not curable, but treatable, your treatment options may be limited. My wife chose to take a drug that may or may not be harmful, but it was a better option that not taking anything at all.
Kris

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I agree that there are many factors to consider, especially the type of cancer and stage of cancer a patient is experiencing. Every OTC does have side effects. When I made my comment, I did not recall your wife's situation, so I apologize if my comment caused any ill feelings. I wish only the best for you and your wife.

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No ill feelings at all, I'm sorry if I came across that way. I have known people that have chosen against treatment because they have heard of the cure being worse than the disease, and I just wanted to reply as a follow up for anyone that is newly diagnosed and might be afraid of any treatment option due to side effects or dangers. I have the utmost compassion for anyone diagnosed with cancer. I also wish the best for you. ((hugs)).

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Hello and welcome to the new people in the group and so nice have some supporters (husbands) joining us! As a reintroduction of myself, I was diagnosed with stage IV breast cancer June 2020 at the age of 54, breast tumour, lymph nodes and Mets to femur, both hips, spine, sternum and one rib. I started on Ribociclib and Anastrozole, with XGeva injections monthly. All worked great 19 months, no evidence of disease but then it came back. Switched to Afinitor and Exemastane, had breathing issues so had to stop that, went to Xeloda, manageable side effects but after 6 months the cancer had progressed. I am now 4 treatments in to a new med not yet on the market (on a clinical Trial) that after two treatments already showed a decrease in the cancer!!! Dato-Dxd for short, but doctors ave very optimistic about this treatment for patients like us who have already tried a few other options. Side effects with any drug can be challenging, including this one I am on, I encourage all of you to take the meds they provide for relief regularly to help. The mental aspect we are all facing, there is no pill for that and I also find it hard to stay positive for family and friends etc. But - new medications are coming out regularly and each one getting better!!! Keep hope for that and do your best to live your best life every day you can!!! You are all so brave - the husbands also- to go through this journey and be strong enough to reach out to chats like this to openly share your thoughts!!! Hang in there fellow warriors!!! 😘

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Hi all, I have MBC stage IV; I took Verzenio for 40 days. It caused me all the horrible side effects it said it might cause.
It put me in the hospital as I developed two blood clots in my lungs that caused my oxygen level to go down to *88 and my blood pressure to go to 125. I now have to take blood thinner meds for the rest of my life to avoid blood clots.
Because I am pretty sure that any chemo drug I take will cause me side effects that I can not handle.
But that is my body chemistry, which is over-sensitive to all drugs, not just this one.
I have had a second opinion about my cancer care, and all agree that I should only take exemestane, the hormone blocker, and hope for the best.
I envy anyone who can tolerate any chemo drug; I wish I could be one of those.
Anyway, I am doing well in this writing.

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