How are people with liver mets doing?
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So you all did Letrozole and/or faslodex before the ibrance was approved? So doing the Letrozole and Ibrance faslodex together is it better than the others alone? (that's what I am on.).... I really don't want to sound like a downer here so please forgive me...but I am reading these threads and seeing people...and then yea then I can see why they have stats of only 30% of people living even to 5 years...it's like...I feel like I was in never, never land thinking I have a high probability of making it to 5 years...I mean I guess I just thought the Ibrance and stuff was gonna be like a wonder drug and I was definitely making it to that .... but the more I read on here and look at when ppl were diagnosed etc...especially those of us with it in the liver...it just looks like 5 years is highly not probable.
Especially reading about people who are only getting a few months on Ibrance... Again I am sorry I just think I am seeing the reality now and well...you all know.
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Hi Nicole, I know things will seem very dire at times, but there is also a lot more hope these days than before. There are a lot of drugs still in your arsenal and new ones are in trials. While that is not a guarantee of anything, the trick is to keep going and hope that the existing drugs will prolong things long enough for the next drug or the next big thing (hopefully) immunotherapy will get you out of this. I know a lot of people on here who started with liver mets and are doing well. Its easier said than done on most days but keep your chin up and lets all hope that you get enough time on Ibrance so the next new drug is out there waiting for you.
Hope you feel better. Hugs.
Ann
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Nicole, i am coming up on 8 years next month. These treatments are good. What you are on is a good treatment and may work a long time for you. If it doesn't, they will find another that will. At the moment, stage 4 bc Mets is still considered terminal. I do believe that could change....and soon. BUT, terminal doesn't have to mean soon.
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Unfortunately, I was denied that brain met trial drug because of my previous history of cardio problems due to Herceptin. I might try to reapply as I seem to have found a combination of heart meds that are preventing herceptin induced cardio toxicity.
I just looked back and came home after 2 nights in the hospital. I had a late surgery so they kept me the second night. I went home early the 3rd day. My surgery was also laparoscopic. I did not find the whole resection process hard to recover from and would tell people to not be afraid if this is an option for them.
In terms of testing indicating a treatment will work for you and his long that means. I don’t think anyone knows. As previously stated cancer is sneaky and smart. You can even have tumors of different types at the same time. That is why we need more research.
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Nicole...five years is very doable....you shouldn't worry...some people manage to stay on the hormonals for 10 years without progression.
Like me, you're gonna want to make sure that the current therapy is shrinking your liver mets...otherwise it will necessary to do a procedure called the y90, or other procedures, that many women on this board have used to successfully eliminate the lesions in their livers and stop progression.
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Thanks everyone! I so appreciate all the responses and you all definitely made me feel better.
Frisky... I am only a month in on Ibrance they just lowered me to 100mg. I did email the radiologist and asked last week about Y90 vs SBRT. He said after I do the 3 months on Ibrance and we rescan if they do a procedure he would recommend SBRT he said that since right now I have the 3 lesions in there and they are in good spots that would be best. He said the Y90 would be good for a person that has more lesions. (I am paraphrasing) So yes I definitely want a procedure
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sounds to me that you're in excellent hands Nicole...your oncologist makes total sense. Give the medication time to work and have a plan ready if it doesn't...stay positive as you can see from reading the profiles of the various members, there's a lot tobe grateful for...
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Nicole,
Also remember that you might consider microwave ablation, which is what I am going to do in early July for my largest lesion. That was recommended to me by Dr. Lewandowski at Northwestern, and I'm doing it at Hopkins in early July. I got the same word from Lewandowski and Liddell at Hopkins about Y 90 as you did -- perhaps something to use later but just not yet. I think it's great, though, that so many of us are looking into these kinds of local treatments because it will help to educate MOs as well as interventional radiologists that breast cancer patients need and want these kinds of treatments that are used for other kinds of cancer too!
Just curious -- why did they lower your Ibrance? I won't start that until after the ablation procedure, but I am already bracing for SEs related to that drug. The clinical pharmacist at Hopkins asked me if I had had SEs with tamoxifen the many years ago that I took it. I remember that I did, just not what they were specifically, but that I didn't like the drug. She seemed unhappy with that answer.
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BevJen ..My white blood cell count was low that's why they lowered it. That was 1 week ago today. I did finish my 5 pills that I had left and now Monday I will have blood drawn again to check it again. My MO decided to lower it based on it being low. I am told that fairly common on this and not to worry, that it will still work the same against the cancer.
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NicolRod, I was on Ibrance/Faslodex for 18 months before it stopped working. At that time, I had only bone mets which are harder to treat. Since the past two years,I have been on different chemo regimens. I hope Ibrance works for a long time for you. For me, it was an easy treatment except for some joint pain due to faslodex. My WBC would drop every month and I had to get Nupogen shots to maintain the blood count. Are you getting any growth factors to maintain your blood count?
Have you had Taxol for liver mets? What other treatments have you had? If Ibrance stops working, there are other drugs that your MO may try. e.g. Taxol, Xeloda, Gemzar, In my opinion, 5 years is just an old statistics number!
I am on Taxol since April2019, which seems to be working for my liver mets. but don't know if it is keeping my bone mets stable. Will find out next month.
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Nicole, don't get down about stats. It is true that someone can have a mutation on an F1 report that has a better likelihood of responding to a certain medication and still, Ibrance (or whatever other mutation and drug combination one has), doesn't work for long. However, it goes the other way as well. Many people have multiple mutations that indicate that they would be resistant to a drug and the drug still works for a good amount of time. F1 provides a roadmap and certain indicators but nothing is definite, for better or for worse. Also, there are new drugs coming out all the time and each can extend one's life a bit longer. The overall stats are dated and include everyone - meaning, they include people who turn down treatment or, sadly, don't have access to appropriate treatment, people with many health problems (comorbidities) from the outset which impact survival. For a healthy person, who takes care of oneself and is receiving good care, those stats may not align with true prognosis.
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S3K5 this was only my first month on Ibrance and my count was 8 (if I remember correctly) and she lowered it to 100mg so I have not gotten any shots for low WBC yet.
I have never taken any treatments. I did not even take the Tamoxifen the first time I had the Stage 0 INSITU. that was one of the reasons they felt I may respond well to the hormone therapy now....I have never had chemo either.
I just feel like I was naive thinking "oh Ill get that Ibrance and be good for years...and years..." then I came on here and was seeing the women who didn't even get more than a few months or 1 year...just deflated me yesterday.
It is good to know the stats included or didn't include people and information that it should have so they are not as accurate as the number they project.
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Nicole. I think your MO is making good sense, too. In fact, that is what happened to me. After 3 months on I/L my scan showed that my liver mets were still active even though my lung mets were stable. So, my MO referred me to the IR for the y90. I did have a lot of mets so that's why he chose y90. Also, there are many who have had the dose dropped on Ibrance and it's still worked for years.
I can imagine how surprised/shocked you must have been that a stage 0 BC could have metastasized. My sister was DX stage 0, she didn't have any further treatment except for a double TRAM. I honestly did not think it was possible for a stage 0 to spread till I read your post.💞
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Hi all, I also posted this over on the "resection, ablation, SBRT, Y-90" thread. I have not posted in quite a while. Have had the luxury of doing well for the last year. I have had progression on H&P. A single lesion but it is @ 2.5 cm and wasn't discernible 3 months ago. I talk with IR next week about the smorgasbord of options and what they may recommend. I am assuming ablation and y90 will be on the menu. I have an appt with my 2nd opinion doc the next day. Guess we will be changing my systemic therapy, too. Presumably to T-DM-1. I am looking back thru postings for words of wisdom. Sounds like y90 has worse SE's and more risk than I had realized/anticipated. I am going to try to read more about people's experiences with ablation. I will flip over to the liver mets discussion, too. Thoughts suggestions appreciated - especially key items for my question list.
One more thought: I have not had genomic testing done but my MO and I have discussed, in general, the possibility of doing that. She wanted to wait until we heard from IR before doing that planning. Genomic testing and clinical trails are on my "discuss" list. Anyone done Strata testing? I will search for posts on their testing.
Thanks for sharing wisdom.
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Limpid- sorry you are dealing with this. My one initial thought is ask if they do the ablation if they can get a good biopsy sample. I was told that if I proceeded with Radiofrequrbcy ablation they could not guarantee that. I wanted to ensure I git a good biopsy so I chose not to do the ablation procedure.
Also, find out if the location of the tumor allows for ablation. Sometimes it is too near s blood vessel to be ablated
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Ok y’all, I need some help. I’ve been jaundiced now for about two weeks. Billie is at 1.5. Went to the Er they sent me home, not much worried about it. But now my bowel movements (sorry tmi!) and really yellow and my urine is very dark. Is there anything I can do to help my liver and kidneys? I’ve been trying to drink a lot of water but have been sooo nauseated it’s all I can do to go food down to take the xeloda. Does anybody have anybsuggestions
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oh , forgot to ask, does anybody know if cbd oil is hard on your liver or puts any stress on it
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Please call your MO asap. Your gallbladder could be an issue. I do not know anything about CBD oil.
S
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never though about gall bladder.
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Thank you Sandi, will call the onc tomorrow
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Left foot: funny... I was reading a journal article last night about biopsies and ablation. It basically said there is no reason you can't do a biopsy first and then proceed with the ablation. Which seems sensible to me. I will be sure to ask. It looks to me like the tumor should not be close to major vessels but I will ask about that, too. Thanks.
Grannax2: I was reading your post above about stage 0 and MBC. Some people are MBC from the start and they never find any cancer in the breast at all (which you may well have heard before). Crazy, huh? I kind of fall into that camp: had a clear mammogram after they found the tumor in my liver. Crazy stuff. Love the fish stories.
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Im wondering if I should call my regular doctor or try to get in with my onc
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Gracie, I think you should call your onc right away - the symptoms you relayed yesterday are concerning. In my experience, the primary doc usually defers to the onc anyway. I think they get nervous treating us for anything when they think the issue might be related to either our cancer or a cancer treatment side effect. Please keep us posted!
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Gracie, I agree, try to get an appointment with your MO. Due to fear of the unknown and fear of liability, the regular doctor will not likely do anything for you except refer you to the MO or back to the ER. Good luck. Bilirubin of 1.5 on the test I receive is elevated but only slightly. However, it sounds like something is definitely going on. Continue to take fluids - if you can't tolerate water, take juice, gatorade or anything you can get down.
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Thanks JFL, called onc but of course can’t get through to anyone, had to just leave a message. My biggest problem is if I drive myself, and and sends me to the hospital, then my car is stuck in Wichita with no way to get it home
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There should be someone on call at your MO office. Please call. Did you have these same symptons in the ER? Just worried about you.
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Gracie, I hope you have some luck getting ahold of someone. That is very hard when you are facing driving challenges (car being left somewhere) on top of everything else. I drive myself to my appointments and end up in those predicaments from time to time. Major hassle. Occasionally, I have taken an Uber, which is convenient but can be expensive, depending on how far you need to go.
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I got in to see the PA. My billi jumped from 1.5 to 8!!! They’re checking for a clogged bile duct. Should know today. If so, then surgery, if not? No answers on that yey
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Gracie. Thank goodness you got in, that's a big jump. Thanks for keeping us updated.💞
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Gracie, I am sorry that you are having such a difficult time. I hope they have a definite answer quickly. A clogged bile duct is often remedied by putting a stent into the duct. The stent is put in place through an endoscopic procedure rather than open surgery. The recovery is pretty quick and easy, and relief from the high bilirubin count is seen very quickly. If surgery is recommended, ask questions to find out why it is preferred or get second opinion. In some cases, it might be needed, but be sure to have all the facts. (My dh had issues with blocked common bile duct a few years ago, so I am speaking from experience). Let us know how things go. I am lifting you up in prayer.
Hugs and prayers from, Lynne
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