How are people with liver mets doing?
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I am magine everybody's different with their children. My son saw me go through stage 3 cancer already.
We explained to him that the cancer is back but we did not explain that it could possibly be terminal. And the reason for this is simple, people with stage 4 breast cancer can live a really long time and I didn't see any point in scaring a six-year-old when I may be around for another 10 years And we can have that discussion at a later date.
If things start to decline than I think I would have the talk with him about the possible terminal nature of this disease
Sending big hugs to you and your sister ❤
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Talking to my kids about my cancer was one of the most difficult things I had to do .. I knew I had to do it and that it’s not something I can hide for long .. I also had an added complication because I was 32 weeks pregnant with my last baby when I got diagnosed and it was a horrible, painful pregnancy every step of the way .. they saw me deteriorate and endure so much pain with no real explanation as to why all this is happening to their mom.
To me it all happened so quickly from the day I got diagnosed to the day I had my baby it was only two weeyand my husband and I decided that we should discuss my diagnosis before I go in to have the baby just in case I never came back home.
I took a week to understand what’s going on, do all the scans and get some answers and wrap my head around all this which as you can imagine was a nightmare and a few days before delivery we sat them down separately to talk to them according to their age, ability to undetand their character. They were 12 and 8 at the time. I made sure to explain things honestly but not too negatively and give them a chance to ask questions and made sure to stress that they can come to me st any time with more questions whenever they feel like it.
I used a guideline from the American Cancer Society for inspiration.. I can’t find a link to the exact one I read but I put a link to one of the several ones they have .. it’s very useful.
I also emailed a copy to all the family members who would be spending more time with my kids than normal so they don’t get cornered and not know what to say. I also asked them not to approach them before I talk to them first so they hear it from me.
Good luck.. hope this helps
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Hi everyone,
Im newly diagnosed with liver mets.
Im starting Xeloda only.
I did Ibrance and fasolodex. Received 2yrs of thought to be piece of mind.(always get imaging)
Scout about I have a question. What treatments have you had. I like the way your onc is changing it up.
I often wonder if meds we have used in the past can be used for future treatments. Or basically trying to trick cancer by switching meds say Ibrance stopped working so bring it back later after a other treatment fails. I dont know grasping at straws . I guess.
Im not sure if I should worry about receiving only one med and no iv chemo .
I really haven't responded well to treatments thus far.
Im not sure if I should ask for the strongest now or wait? Hard decision to make.
Thanks for listening:(
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Coolbluewater, telling kids really is a personal decision. I have one child who is nearly 4. I was pregnant with him when diagnosed, like Nouzay. He has definitely picked up on some things over the years but doesn't know and would be too young to truly understand. I want to start slowly exposing him to some of what I am going through so it is not a shock one day but my DH is still hesitant and I have been doing well the last 4 years so we haven't yet hit a point where we need to tell him. It is a tough call because this disease is so unpredictable and everyone's course is different. Also, with all of the new medications coming out each year, people are living longer and longer. I essentially function on a "conditional survival" model where my goal is to keep kicking until the next drug comes out that I can take. I know women who have been living with Stage 4 for 18+ years. One just never knows.
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Z- So good to hear from you
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Funthing. Sorry you needed to join the liver mets thread. None of us really wanted to be here but it does help.
Yes, I've heard ladies here talk about using drugs that have been already used on you. I think Cure- ious knows about that and Best bird's book will be helpful. Anyone else?
So far, for me I've only been on IL for almost two years. It has worked beautifully on lung, chest mets but not so great on liver mets. It took two y90 to get rid of all my liver mets. Very successful for me for over a year. I did have big scare of progression in September. MRI did not see the new area that PET saw. So I didn't change treatment and am waiting to re scan in December to confirm.
So you got two years on IL? Where are your other mets? I've heard xeloda is good for liver mets. You might ask about seeing an IR about local treatment. We have a thread for that and quite a few of us have had successful treatment. You might not even have to stop your current TX while you have the procedures.
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Funthing. Sorry you needed to join the liver mets thread. None of us really wanted to be here but it does help.
Yes, I've heard ladies here talk about using drugs that have been already used on you. I think Cure- ious knows about that and Best bird's book will be helpful. Anyone else?
So far, for me I've only been on IL for almost two years. It has worked beautifully on lung, chest mets but not so great on liver mets. It took two y90 to get rid of all my liver mets. Very successful for me for over a year. I did have big scare of progression in September. MRI did not see the new area that PET saw. So I didn't change treatment and am waiting to re scan in December to confirm.
So you got two years on IL? Where are your other mets? I've heard xeloda is good for liver mets. You might ask about seeing an IR about local treatment. We have a thread for that and quite a few of us have had successful treatment. You might not even have to stop your current TX while you have the procedures.
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Coolblue, My kids were 9, 15, 17, and 19, when I was first diagnosed Stage 1 in 2005. We sat them all down together to tell them. Our youngest took it hard. He keeps a lot inside. I was leaving for work one evening, and I went to give him a kiss good-bye. He moved away from me. I asked him what was wrong? He said he didn't want to catch cancer. I had no idea that this is what he thought. I told him he couldn't catch cancer. Then he gave me the biggest hug. His anxiety got worse. I did send him to a therapist. later on when he was in middle school. It made him worse. When it came back in 2012, again we sat them all down. He again took it the hardest. He was 17, and just laid down on his stomach, on the deck, and wouldn't move for a long time. He cried. They were all shook up because now I was stage 4. I know a lot of people go to a therapist, and send there kids there when they are diagnosed. I think that you just have to be open with them, and let them know what is going on with you. If you notice they are having a hard time, and you can't help them, then yes, I would get them some help. Hugs!
funthing, I am 6 years out stage 4. I started with faslodex (1 1/2 years), then they tried letrozole (3 months), xeloda (2 1/2 years), Ibrance and letrozole (6 months), doxil (3 months), taxotere (a little over a year, first time I lost my hair), currently on CMF (since July) and my tumor markers have jumped up a lot. I have my first scans with it on Monday. I think I will be changing once again. It's too bad because the side effects were very mild. Taxotere was just awful. My oncologist told me that she has 2 women, one 14 years out and one 16 years out. I plan on being around at least that long! We are living with cancer, not dying from it! Big hugs!
Lynne
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Coolblue, My kids were 9, 15, 17, and 19, when I was first diagnosed Stage 1 in 2005. We sat them all down together to tell them. Our youngest took it hard. He keeps a lot inside. I was leaving for work one evening, and I went to give him a kiss good-bye. He moved away from me. I asked him what was wrong? He said he didn't want to catch cancer. I had no idea that this is what he thought. I told him he couldn't catch cancer. Then he gave me the biggest hug. His anxiety got worse. I did send him to a therapist. later on when he was in middle school. It made him worse. When it came back in 2012, again we sat them all down. He again took it the hardest. He was 17, and just laid down on his stomach, on the deck, and wouldn't move for a long time. He cried. They were all shook up because now I was stage 4. I know a lot of people go to a therapist, and send there kids there when they are diagnosed. I think that you just have to be open with them, and let them know what is going on with you. If you notice they are having a hard time, and you can't help them, then yes, I would get them some help. Hugs!
funthing, I am 6 years out stage 4. I started with faslodex (1 1/2 years), then they tried letrozole (3 months), xeloda (2 1/2 years), Ibrance and letrozole (6 months), doxil (3 months), taxotere (a little over a year, first time I lost my hair), currently on CMF (since July) and my tumor markers have jumped up a lot. I have my first scans with it on Monday. I think I will be changing once again. It's too bad because the side effects were very mild. Taxotere was just awful. My oncologist told me that she has 2 women, one 14 years out and one 16 years out. I plan on being around at least that long! We are living with cancer, not dying from it! Big hugs!
Lynne
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Coolblue, My kids were 9, 15, 17, and 19, when I was first diagnosed Stage 1 in 2005. We sat them all down together to tell them. Our youngest took it hard. He keeps a lot inside. I was leaving for work one evening, and I went to give him a kiss good-bye. He moved away from me. I asked him what was wrong? He said he didn't want to catch cancer. I had no idea that this is what he thought. I told him he couldn't catch cancer. Then he gave me the biggest hug. His anxiety got worse. I did send him to a therapist. later on when he was in middle school. It made him worse. When it came back in 2012, again we sat them all down. He again took it the hardest. He was 17, and just laid down on his stomach, on the deck, and wouldn't move for a long time. He cried. They were all shook up because now I was stage 4. I know a lot of people go to a therapist, and send there kids there when they are diagnosed. I think that you just have to be open with them, and let them know what is going on with you. If you notice they are having a hard time, and you can't help them, then yes, I would get them some help. Hugs!
funthing, I am 6 years out stage 4. I started with faslodex (1 1/2 years), then they tried letrozole (3 months), xeloda (2 1/2 years), Ibrance and letrozole (6 months), doxil (3 months), taxotere (a little over a year, first time I lost my hair), currently on CMF (since July) and my tumor markers have jumped up a lot. I have my first scans with it on Monday. I think I will be changing once again. It's too bad because the side effects were very mild. Taxotere was just awful. My oncologist told me that she has 2 women, one 14 years out and one 16 years out. I plan on being around at least that long! We are living with cancer, not dying from it! Big hugs!
Lynne0 -
Sorry for the 3 posts (I deleted the last 2). I was getting an error saying they could not post so I tried again and again.
Have a good day everyone!
Lynne
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Sorry for the 3 posts (I deleted the last 2). I was getting an error saying they could not post so I tried again and again.
Have a good day everyone!
Lynne
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Wow this is definitely the positive energy I needed. Way to kick CA. Thanks for the useful information.
I need to start thinking of it as a disease not Cancer.
I was feeling low and disappointed.
Granax I was on Fasoldex and Ibrance 2yrs. My other mets is in my lymph node the opposite side of my orginal dx. I had skin mets but gone now , very happy about that.
radiation. Tomorrow Im going for Thoracic and brain MRI"s. Ugh.
Big hugs to all.
Im Thinking of something strange. My grandmother had Cancer. I remember my parents driving her to treatments.
They used a hyperbaric chamber she was so afraid.
Why do we not here of this anymore?
I also thought of blood transfusions. Im sure this would not work. Im now eating like a rabbit. No meat, no sugar, no flour, and no wine
lol.Just random thoughts ......
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Funthing,
I just had a thoracic MRI yesterday, with and without contrast, so I was in the tube for about an hour. I had it to find out the cause of spinal pain. It is a very hard surface, and my back was really painful for the rest of the day.
Ask your techs if you can have a softer surface to lie down on if this is a problem you are experiencing. I am certainly going to ask next time.
Jennifer
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Hi All
Thanks Jen for the advice. Yes some memory foam would be nice .
Music always gets me through pain. Mine is probably muscular or stress.
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Hoping for awesome outcomes with your upcoming scans ladies!
Today I began the Zoladex/Letrozole/ibrance combo. Tell me your stories ladies! I know the basic side effects like hot flashes and possible anemia but what have your experiences been? Just looking for any input. I always get a little nervous when I start new medications.
Also anybody with experience with the Y90… when I talked to my new oncologist today she said that the interventional radiologist told her I was not a candidate for the Y90 because I had previous mets in my bone ( She only told me this after I questioned her and it almost looked like she had forgotten all about it). My last pet scan showed they were all sclerotic and no longer taking up the dye. I could have sworn that I read on here that there were other ladies that received the Y90 when they had more than just liver mets. I'm very frustrated, Why is my life worth less than somebody who doesn't have previous metastasis somewhere else? I don't understand what one has to do with the other and she was very very bad at explaining it to me.
She's done some other things that are starting to make me question her ability. I was only switched to her when my main oncologist had to leave for personal reasons. I feel like I'm more well versed in the hormonal medications then she is sometimes. She wanted to make me wait another 5 weeks to start all my medications today because they forgot to get estrogen levels on me last week when I was there. I refused to leave until they started me. There's no way I was going to wait another 5 weeks with absolutely no treatment at all. My a tumor grew to 22 cm within less than 6 months And with what they call a markedly reduced tumor and all of my other metastasis gone, I don't want to backslide. In the end I won and I got the medications and they went ahead and drew the blood again for me today.
Made an appointment with another onc today for a second opinion. I only have one life and I want to make sure we're headed in the right direction with my treatment. Regarding the Y90, she couldn't even tell me who I should talk to. Should I try to make an appointment with a radiation oncologist? Where would you ladies go from here because I feel very lost right now 😕
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Bubblebeard, it's an interventional radiologist you need to see, one who has been doing Y90. I would try calling the closest NCCN cancer center to you. I'm glad you are getting a second opinion. Your current onc sounds lazy or too overbooked to give you proper attention. Here is a thread with a lot about Y90 aka radioembolization:
"Liver mets: Resection, ablation, SBRT, Y90, anything else?"
https://community.breastcancer.org/forum/8/topics/...
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thank you shetlandpony! I will check it out. I used to just go along with what the doctor said but I'm learning quickly that I have to stand up for myself and I really feel like this is a good thing for me to try. As of right now despite what my doctor says the disease is really only in my liver. I would love to at least give it a try or have somebody who knows what they're talking about explain to me why I can't have it, you know?
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Darn it, that link isn't working. What is the name of the thread?
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Bubblebeard, I had Y90 and I have had liver and bone mets all along. Bone mets, like yours, are inactive and sclerotic (healed). Typically, a Y90 candidate would have stable mets in other organs but some here have had Y90 while not stable elsewhere. I learned through my own experience that nearly all oncologists do not know about Y90/are not up to date on its use in breast cancer, even interventional radiologists who do Y90 are not up to date on its use in breast cancer and you should try to find an interventional radiologist that does a lot of oncology. You are at Moffitt, right? You may have some good doctors there given that it is a top ranked facility. I am in South Florida and had an excellent interventional radiologist at Baptist/MSKCCC. I did a lot of research and was prepared to travel anywhere in US for a good IR but did not have to do so.
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Has anyone had a blood transfusion for chemo-induced anemia? I have been trying to avoid it but don't think that is wise anymore. I am giving myself a day to think about it but am likely going to have one next week. I have been eating red meat - grass fed, organic steak, ground beef, iron-rich shellfish and a variety of iron-rich plant-based foods to try to raise my iron levels, although I don't know if that really helps since my iron levels are not causing the anemia. Doxil is going really well after 7 months. I feel pretty great and somewhat normal again. Abraxane was tough toward the end and I feel so much better on Doxil. My only major issue with Doxil now is anemia for the last three months that has slowly creeped in and is slowly getting worse.
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Thank you for your replies everybody! I thought I had seen other people with other mets get the y90. Like I said I booked a second opinion ...when I go talk to that oncologist, who is very experienced, hopefully he can point me in the right direction.
JFL: i am at Moffit, and its a fantastic place that I have had very few bad experiences at, however they just lost a major oncologist in the breast clinic and I think they are scrambling to get all these patients who are already established taken care of. Being that I am at the premiere facility in the area, if not if the state, unless the other doc points out some big errors... I think I'm gonna try to switch to another oncologist in the breast clinic at Moffit. It will take a few months to get me in with somebody but now that she's actually started me on treatment I'm OK with waiting if I have to. Really if there's anybody in the area that's going to do something it's going to be somebody at moffit. However, I feel that the doctor I have did not fight for me. I know my old oncologist would have if she believed I was a candidate. This doctor told me last week she thought I was a candidate but this week totally brushed it off.
After she started me on the treatment today I thought about canceling the 2nd opinion but my mom told me to go ahead and keep it, she said ...you're stage 4 so you might as well have a doctor that's completely unconnected to the situation look at it. A second set of eyes is always a good idea. Also just because I got this situation resolved with her doesn't mean another one won't come up in the future and she's already shook my confidence in her too much.
I have no experience with blood transfusions but sending you a big hug. Hope everything resolves, definitely keep us updated💜
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JFL - YES! I had a blood transfusion in August and I have felt more normal than I have in years since then! I had no idea how *low* I had gotten. I felt like a whole new person. I will mention that I am no longer on chemo (and had already stopped it at the time of the transfusion), so responses may vary.
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JFL, I had two blood transfusions while on AC in Oct 2016. It helped tremendously.
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Loved Ibrance and fasolodex. Make sure with any treatment to get imaging and markers. Do not assume a little flutter in markers are ok. As I was told. I was also told no Pet scans were necessary because my markers were fine. My doctor did not have my back. It Spread to the liver while taken it.
I had no side effects just joint pain.
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JFL-I had two blood transfusions while on AC this summer. Packed red blood cells for my low hemoglobin. This has been a tough road for me. Diagnosed de novo last year, I’m only 45 with three kids-12, 15 and 16. My 15 year old son Evan brought some levity to the situation. I was in the hospital because of pneumonia and low wbc, ANC. The nurse was putting the bag of packed red blood cells on the IV stand and I was just sitting in the chair reading. My kids come in for a visit and Evan says “Where are all the doctors?” Puzzled, I asked him what he meant. “I thought when you got a blood transfusion you were laying on a bed with doctors standing over you yelling ‘CODE’ something. You don’t even have any blood on you mom” 😂 I still laugh when i think of it. Hope the transfusions work wonders for you, theymade me feel like a new person.
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Bubblebeard - I been on the Zoladex/Letrozole/ibrance combo for the past 8 months. My main side effects are hot flashes and fatigue. I am tolerating the combo very well. Join the Ibrance forum along with this one.
https://community.breastcancer.org/forum/8/topics/...
When my cancer progressed from stage 2 to 4, I went to two top oncologists for opinions. Neither were a fan of localized treatment (ablation, Y90, etc.). They are oncologists and many of them seem to only believe in systemic therapy (but hopefully that trend is changing!). I made my own appointment immediately with an interventional radiologist who specializes in oncology and has treated breast cancer metastatic patients. He performed an ablation on my one tiny liver met. He will perform the Y90 if I need that later. I went back to my onco and told her I was getting my tumor ablated. She wasn't sold on the idea but supported it and said the tumor board at the hospital had discussed my case and many thought that was a good idea.
I love having the IR on my medical team. He follows up with my liver every few months, so I have a second pair of eyes on my liver.
Sadly, we often have to be our own best advocate. I am very impressed that you refused to leave until they took your estrogen levels. I have done the same exact thing. Even with the best oncologists, we must speak up and expect the best treatment and attention. However, her recommendation that you wait another 5 weeks to start was not appropriate. I would follow up with a second Onco opinion. Even if you stay with the one you are currently with, you will feel better getting a second opinion and knowing you have choices.
~Kar
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JFL, I recently had a blood transfusion for med induced anemia. I'm small, so only needed 1 unit, and I felt so much better within a few days. SOB and dizziness went away, head stopped pounding This was about 6 weeks ago, and my counts have dropped pretty low again already, thanks to Afinitor. I just had a discussion with my local onc yesterday re. Procrit, which he is anxious to give me, but which UCLA says "no" to for mbc. I'm mentioning it in case it's something that might be suggested to you. After doing my own research, I'm going to err on the side of caution and continue to refuse it.
And you're right about iron rich foods not helping. I've also been doing that -- even started eating a bit of red meat again, much against my natural instincts -- and I'm also concerned about getting too much iron. But the bottom line is, it hasn't made any real difference, and my counts continue to drop.
Here's a very good article re. the possible issue with Procrit, if anyone's interested.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC42275...
Deanna
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Bubblebeard. I am one of one's who had y90. I had mets in lung and chest that were not stable. It's best to do your own research to find an IR who specializes in y90. Have a consultation to see if you are a candidate. Then you will be able to make your own decisions. I was lucky that my MO knew that we had one of the best IR in Texas, right here in Dallas. So she sent me to him. But that's not always the case.
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Kattysmith, Grriff, SandiBeach and Deanna, thanks for sharing your transfusion experiences. Deanna, my MO mentioned that he didn't recommend Procrit because there is research that is essentially reverses the benefits of the chemo. Scary! Thanks for posting the link. My hemoglobin is low. Aside from the fatigue, shortness of breath, weakness, sluggish mental processing, I have had excessive thirst for cold water and a craving for ice chips/crushed ice. It is odd because I never typically drink cold water or put ice in my water. My teeth are sensitive to cold and I always heard it was healthier to rink room temperature water. Now, I think about ice all the time and go through a cup or two of ice a day. I looked it up and it is a common, yet not fully understood, symptom of anemia. So weird!
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