What drug helped you get rid of liver... - SHARE Metastatic ...

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What drug helped you get rid of liver mets?

needabreakfromcancer profile image

I just got back from UC-Irvine and things are not great. My biggest issue is the liver mets which are making me sicker and weaker. Then equally awful is that it has traveled to the lining of my brain on the right side. I also have brain damage from the exemestane and wonder if they know the difference. I had a nurse visit and she told me immediately that exemestane is known for causing brain damage while all my doctors deny that. She said that all of the cancer drugs can cause it, but said that exemestane is known for it. At this point, I need quality of life, but have wondering if there is a cancer drug that will help me instead of hurt me.

33 Replies

Hi,

I can't answer your question. But I just wanted to send my best wishes your way. I hope that someone will be able to help you and answer your question. What has your oncologist suggested?

Sophie

Hi,

Sorry to hear about the liver mets. I do too. Last year I was in very bad shape due to the liver mets. I was in liver failure and had to be hospitalized. I started on chemo as an inpatient. I had never had chemo before- just hormonal therapy (Tamoxifin, Letrozole, Zoladex, Fulvestrant, Ibrance). I was treated with Adriamycin and Cyclophosphamide. Just wondering if you have had chemo?

I am on chemo again (different drug)- and like you I want quality of life and a cancer treatment/drug that will help.

Sorry, don't know if this was helpful. I hope for the best for all us.

Nama

Hi!

So sorry to hear your news. I too am unable to answer your question but also want to send you my best wishes. You’re not alone in this - as the nurse visiting you said, we could all have a similar reaction to our meds. I’m so hoping your oncologist can find something effective but not toxic.

Try to stay positive and please update us.

Thinking of you. 🙏🏻❤️Kathleen

Hi, as you know afinitor didn't work for my liver met. I only have one but it doubled in size in the 3 months I was on that drug. My oncologist insisted that the next treatment had to be intravenous chemo, either paciltaxol or a related trial drug which is used for prostate cancer.

My quality of life is better than when I was on afinitor as i don't feel so ill. I have a lot of nausea, tummy upsets and fatigue but I am still working full time, and it's manageable.

I really didn't want to go back to intravenous chemo but this isn't as bad as I thought it was going to be. I have had my first scan and I get the results next week to find out if it's working.

13plus profile image
13plus in reply to Julie2233

Best of luck for your results, it sounds like you’re doing well!

Julie2233 profile image
Julie2233 in reply to 13plus

Thank you, it's horrible waiting for scan results. I have my fingers and toes crossed :-)

girlsptz profile image
girlsptz in reply to Julie2233

Julie sending you positive vibes that your scan results will show improvement on this new regime. Please share with us when you feel able. Take care.

Sandra

Julie2233 profile image
Julie2233 in reply to girlsptz

Thank you 😊 I will

SoCalLady profile image
SoCalLady in reply to Julie2233

Julie, please let us know your results.

Julie2233 profile image
Julie2233 in reply to SoCalLady

Thank you 😊 The support is appreciated!

mariootsi profile image
mariootsi in reply to Julie2233

Wishing you good results.

Julie2233 profile image
Julie2233 in reply to mariootsi

Thank you 😊

Sending love and prayers! ❤️ I’m Her2 so my treatment line is different than most on here. But I can still pray! 🙏🏻💕

Sending you hugs and positive vibes. I have cysts in my liver that the hospital keep an eye on. I have Metastasis in my bones, lungs and lymph nodes. My drugs are Denosumab, Letrozole, Pablociclib (Ibrance). Take care and keep in touch.

I’m right there with you with liver mets. Just started Xeloda chemo in pill form. It’s supposed to work well on them. Let’s hope so. Was on Exemestane for three years and always thought my brain wasn’t processing information as well as it used to. It’s part of the reason I retired early. Best of luck to you. Since you haven’t had chemo in the past, sounds like you have a lot of options to try.

I don't have any wisdom to share. But am sending lots of prayers and hugs for you and your medical team. Blessings Hannah

Thank you. Your prayers and hugs are greatly appreciated!

My oncologist put me onto taxol as a first treatment since I had liver secondaries. He said it usually worked. As far a chemo went it wasn’t as bad as the one I had for the primary cancer. And it did the trick

Best of luck

Rusty

Hi.

I'm so sorry about your progression. It's just awful.

I agree with some of the other posts. You have options ahead. My MBC progressed to my liver when Ibrance/Faslodex ran its course in January, 2019. I had several liver lesions. My oncologist changed my treatment to Xeloda, an oral chemo pill. After four months on Xeloda, my PTscan showed resolved hypermetablic foci within the liver.

I know many other women on this site have moved onto Xeloda when the cancer progressed to the liver. The side effects have been manageable. I had a difficult time with the Afinitor Exemestane combo. Xeloda has been a whole lot easier for me. And, it's one week on, one week off.

I hope things go well for you when you see your oncologist. I always go to a dark place when my current treatment stops working, but when my oncologist presents a new plan, things get lighter. I hope you feel the same.

Barbara

I may be moving to afinitor /exe depending on my scan results tomorrow (expect progression in my lungs). I had tolerable side effects from Ibrance/Letrozole for almost 4 years. How did A/E affect you?

It worked great on my cancer. Initial reduction during the first 6 months, then stable for 1.5 years.

Side effects included mouth sores - severe and constant, elevated liver enzymes, and eventually, inflammation of the lining of my lungs. That's when I had to stop. Adjusting the dose helped in most situations, but eventually I had to stop even though it was working well at keeping me stable.

Hope you get a good run with Afinitor. Other ladies on this site have done well at higher doses with regard to side effects.

I'm sorry you are having multiple issues in your fight. From your post I think you are referencing liver mets and also some new brain mets. You have mentioned before the issues you had with exemestane. Just to clarify any of the aromatase inhibitors( exemestane, Letrozole, Tamoxifen etc) have in some people for reasons not identified shown cognitive effects. I'm not sure why your nurse preferenced that it is common....maybe she has seen it before but the literature reported currently doesn't show that. Although cognitive changes are certainly debilitating it is not the same as actual brain damage. Treatment wise Xeloda(oral chemotherapy) has been shown effective for liver mets and if you have multiple mets I would imagine at least to get things under control you will have to go the traditional chemotherapy route. Unfortunately most of these drugs can further affect your quality of life at least in the beginning as you adjust. They in general come with more side effects than targeted therapies but we all react differently. I would sit down with your oncology team with an open mind and discuss treatment options. They are the expects in this field and can best advise you. They cannot know how you as an individual will react to a specific treatment, only what they have seen or read about before. Good luck in making your decision on treatment. Take care.

Sandra

Thank you to everyone for your compassion. I am not having any cognitive issues. Exemestane is sending mixed messages to my eyes and making them jump. This in turn, makes me dizzy and I lose my balance. I have been diagnosed by a specialist that said that this is the diagnosis. I have been told by several experts in the field that exemestane is known for doing this. I can no longer drive, nor can I be alone because I can barely stand on my own. When I sit, I sometimes just fall over. It has ruined my life! I am in danger of losing my home because I will probably have to surrender it to go into a care facility or hospice. I will have lost everything because of that damn drug and the fact that the two doctors who had me on it didn't have a clue that it did this!

My gosh I'm so sorry. I read below about your medical history and life certainly has not been easy for you. But you have beat the odds many times so I'm hoping this will be another one of those times. Are they saying those issues with your eyes are permanent even though you haven't for awhile taken the Exemestane? I'm guessing perhaps it isn't reversible because of the fact that Exemestane is a steroidal potent AI. I know you have no confidence in the physicians where you live but I hope you will find more trust in the ones at UC Irvine that you are now seeing. It was rated one of the best hospitals in the US in the past year. Good luck and again I'm so sorry that you are struggling so much at the moment. I hope you don't have to give up your home. Take care.

Sandra

Thank you. I had a problem with the oncologist because he wasn't aware that exemestane could cause brain damage either so he wouldn't look at new info or acknowledge that. When I went to the balance therapy doctor I asked her about the exemestane, if she was aware of what it did? She said "Yes, I am very aware that it does to other people what it did to you." She then asked me if I could feel my eyes jumping and I confirmed that. I can feel them jumping. She then said "They are really moving." Imagine being able to feel that on top of the cancer. I asked the doctor at UC if he could explain the difference between a steroid drug and a steroidal drug and he couldn't. You know more than the doctors and I appreciate your information so very much.

Sorry to hear how sick you feel. I think that visiting nurse kind of overstepped her bounds by telling you that the drug can cause brain damage considering she is not a doctor.

Odd, I Just googled that med bc I am not familiar with it and brain damage is NOT listed as a side effect.

But many of these drugs we are on are known to cause "chemo brain" to describe the thinking and memory problems that can occur during and after cancer treatment. Many other women on this board, including me, have referenced it as a side effect of various drugs we are on. Kind of hard to tell if it's from the drugs I am on, or as my friend without cancer said, she has the same type of short-term memory issues herself and she is not on any cancer drugs.

Big difference between brain damage and chemo brain and I doubt very much the doctors would have given it to you if there was a real possibility of brain damage.

I hope you feel better soon but please do not take what a visiting nurse said as anything more than her own personal opinion but as I mentioned we all suffer from chemo fog sometimes. Who knows, it may not even be the drug but the stress we are going through dealing with this.

Speak to your doctors and I am sure they may explain that chemo fog is a side effect of most drugs used to battle cancer, not your drug specifically. Just because the cancer may have traveled to the side of your brain does not mean it is because of the drug. Cancer is sneaky.

I am sorry to hear of your diagnosis and hope you feel better soon and not so ill, but please talk to your doctors and take their advice. Do not take the advice of a nurse or anyone who is not familiar with your medical history. Let the doctors know.

Wishing you the best.

needabreakfromcancer profile image
needabreakfromcancer in reply to

I am thankful she told me that. I do not have chemo brain at all. My mind is still very sharp. I have been diagnosed by two specialists in the field, doctors. It says specifically that if you have vision problems, are dizzy or have a loss of balance to tell your doctor right away on the web page for exemestane! I found it on the drugs.com page. I did for months and they were oblivious to this though it is clearly listed. I have been in hospitals most of my life. I have had all three polio viruses, spinal, lung and muscular. I am one of the few people in the world to survive all three. My appendix ruptured when I was ten. I only had a 50/50 chance of survival. I had two major surgeries to fuse my spine when I was twelve and have almost died several times from upper respiratory infections. Then the lumpectomy where a lot of cancer was left in me and I was never called back to get a clean margin. Then the mastectomy and lymph node dissection. All of the nurses were wonderful, except for the nuns that were actually cruel when my appendix ruptured. Nurses often know more than the doctors do.

You're in a tough place right now. All of us have been there, but it won't last forever. We are praying for you. I notice you are probably in So. Cal. Did you go to the March 1 MBC conference at UCI? Maybe there's something I can do to help you. I'm in South Orange Co. and would be happy to give you my e-mail if you are in the area.

I am actually in Las Vegas where we have horrible medical care. NPR put a report out that said women in Las Vegas with breast cancer have a substantially lower survival rate than women anywhere else in the country. We have a surgeon here that is leaving cancer in most of her patients. I am one of them! We have the #1 most criminal medical board in the country. My investigator took a bribe from her attorney to close my complaint against her. If you are bored, look up Lara Ward vs. the Nevada State Medical Board. Health care here is nothing more than a huge criminal enterprise, with the exception of a few good doctors. One doctor said that one of the major cancer centers is so unethical that she could no longer be a part of it. This surgeon works for them. I believe they are actually harvesting mbc to make more money from the chemo drugs when it spreads.

Oh my god, needabreakfromcancer, I am SO sorry for what you're dealing with!!! This is horrible! I hate that this is too often the way the world works, humans being greedy and obscenely unethical. Is there any way that you can like move? Humans too often suck....

BTW, I did look up the case you referenced. What a nightmare. I don't know if it's middle-age, late-stage life, having a 21 year old daughter, or just the times, but I'm now so acutely attuned to how sexism is such a powerful, evil force in our world. This case is one example of many...

My unsolicited advice is: get the f. out of dodge! Flee! Find doctors who are competent and care. Nothing matters more.

Be well, take care...

Lynn

in reply to needabreakfromcancer

I read the case. It was nothing more than a case of sexual harassment that the woman is claiming. She applied for a senior position after only being with the place for a year and then after she was denied the position (somebody else longer employed there received it) and then she started claiming sexual harassment claims. Had nothing to do with bad doctor care. There are sexual harassment claims all over different types types of companies and law firms and like the Harvey Weinstein case and Bill Cosby.

She could not have been too worried about bad medical practice because she accepted a $45,000 in settlement to dismiss the case.

I read three articles about it and not sure how it relates to bad doctors at all. Rather this woman was claiming she was harassed by sexual innuendo but she did not even start claiming this UNTIL she did not get the promotion she wanted after being there less than a year.

I live in Brooklyn, NY. Black woman on the average die much younger and at a faster rate than other cities in the US and certainly in all of NY. That is because, on average, many of them are poor and do not have any type of health insurance thus they tend not to go for doctors appointments or follow-up tests.

The same thing with Nevada. It is black woman and woman of Filipino descent that were dying quickly and in larger numbers for the same reason. First, black woman tend to get breast cancer at a younger age and they are more apt to get triple negative cancer which is the worst kind of breast cancer because it is harder to treat.

Sad.

needabreakfromcancer profile image
needabreakfromcancer in reply to

She was telling the truth! I know because Don Andreas was my investigator. He called me telling me that so many things had gone wrong with Margaret Terhar's treatment of me,,he was recommending that she get an attorney before he interviewed her. I had filed a complaint against her. Keep in mind that three days after my lumpectomy, the hospital called to tell me that they had lost my tumor. Six weeks later they found it! Not to mention yet again, that she left a deep margin of cancer in me and never called me back to get a clean margin. Seven months later Andreas dismissed my complaint against her! Another medical facility knew who she was without me mentioning her name. I asked how they knew. I was told, "You're not the only one talking about her, other women are too."

First off, I'm so sorry you're (and us) are going through this. I, too, have had liver mets and they do make one sick, mostly nausea for me, and weaker. I've had success with taxol and taxotere and the immunotherapy drug Keytruda. I don't know anything about exemestance, however.

I understand about quality of life. I feel that it's a balance constantly between Quality of life and disease progression/treatment and side effects.

Wishing you all the best. Keep us in the loop. All the best to you.

P.S. I'm in northern SD County, so not that far from you! I attended the UC Irvine Komen MBC conference last year and it was very helpful. The OC Komen organization is very knowledgeable and perhaps also a resource for you. Just a thought.

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