How are people with liver mets doing?
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Thank you Ann! Ibrance is great! I hope it works wonders for you for years and years! It only worked for me for about 8 months but it reduced the tumor load for me dramatically !! I was diagnosed with MBC while pregnant and after I had the baby almost every bone in my body had mets, several compression fractures and the liver was riddled with numerous mets too .. It brought my tumor marker from the four thousands to a couple of hundreds over those few months so I have nothing but gratitude for this drug! The only issue I had with it was the neutropenia I had a few weeks after I got out of the hospital and I was dragged back there for a week in ICU.
Wishing you all the best and good health
I’ll pm you ..
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Nourzay - thinking of you. just wanted to add that I am on gemcarbo and I have very little side effects. It sounds like you have a friend who's having a rough time on it, and not sure if you've had it, but it has worked really well on my liver mets. I was diagnosed (early stage) just after I had my second baby (I suspected BC throughout my pregnancy). It was strongly ER+ when I was early stage, but a year later I was diagnosed with liver mets and they were triple negative. I started gemcarbo and it got me to NED very quickly. anyway, thought I would add that in case it's helpful.
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leee, I had diffused liver Mets all over right lobe , and three non diffused In left lobe. I still had Y90, which IR said went very well. Of course it's too early to gage success but that your IR doesn't want to do it based on diffused Mets says to me it's time for another IR opinion. My IR says a little of places for like to do y90 because it's not in THIER best interest. (Different corporate agenda) .....they aren't thinking about you necessarily.
In the past 8 years of stage 4, Here is what I've learned about treatment plans. Although I love hearing the success stories, and am disheartened by the ones that don't work, none of it pertains to me. What works for one, doesn't necessarily work for another. It's almost ridiculous how different we all react to the medications. I feel like we are just throwing darts and hoping for a bullseye.
Sunset
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Yes..I agree..throwing darts to see what hits.
Come on, personalized medicine Where are you?
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Has anyone heard from Grannax?? Wondering how she is doing.
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NouzayO- I have been on Afinitor for 2.5 months- don’t know if it is “working “ yet- but, very few aide effects- fatigue and a few mild short lived weird rashes. I was so scared to take this med based on stories I had read here. It seems to be most difficult for diabetics. But, also all these treatments seem like a crapshoot- the cancers and we are so variable. I just wanted to speak up since my MO says that people who don’t have trouble with meds often don’t speak up.
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Glad to hear you dont have any terrible side effects Nkb. I hope you also see some good results with it.
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Funny that's what my husband says too .. if people are having no trouble with a service or treatment or whatever they usually never say anything.. it's the ones that have something to complain about that keep bickering 😂
Thank you Nkb for sharing your experience! I'm glad there are a few out there that can tolerate Afinitor fairly well and hopefully with great results.
Were you also referred to Afinitor because you had the Pki mutation ??
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Thriving mama - thank you
for sharing your experience !! It’s really disheartening to see someone develop BC around pregnancy..I honestly never suspected it in my case! It’s becoming more common, I have two friends that also had BC during pregnancy recently but thank God they discovered it in early stages.I’m so glad it’s working for you! Hopefully for a long time.. what made you stop? Were you off medication all together when you reached NED ? What are some of SE with the treatment for you?
I know we are all different but it kind of helps to be prepared psychologically to what’s coming .. I also benefit a lot from people’s insights regarding how to handle side effects and stuff .. those boards got me through a lot
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Nourzay - I started GemCarbo in Feb 2018, both together every 2 weeks. By April I was NED. Then I was NED again in July... and again in October. So 6 months NED, so we decided to stop chemo. Scans in January 2019 showed the cancer was back in my liver and I had some bone spots, so I restarted GemCarbo in February (and added Xgeva). By the end of March, I had metabolic resolution in the liver and all the bone spots were less active. Tumor marker continues to come down.
SEs are mostly just being tired and a little nauseous the day of and the day after. I also go low carb around chemo, so I think that contributes to my decreased energy level and nausea (it's just hard to eat a lot of protein and fat when you don't feel that good!). And some constipation near chemo (thanks pre-meds). By the next day, I'm pretty much back to normal. I've had a bit of neuropathy as well.
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Candy, I was wondering the same thing about Grannax. The last time she posted, things were going well and I hope that's still true!
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Hi ladies, I'm back and doing well on X.
I've been gone on another adventure. This time a Retreat from Cancer with Say Yes to Hope. I met more Stage IV friends and there were five y90 survivors.. Fascinating stories in my head. I have more new friends. Most were colon cancer.
I'm having no SE from X. What a blessing. I'll have a scan to see if it's working in late June, I think. I'll start my third cycle on Tuesday. I'm encouraged because I can tell my lung mets are better. I was able to walk up three flights of stairs without stopping because of SOB. I couldn't do that three months ago. The liver mets are a mystery, of course. But I hope they are responding.
I was completely worn out and busy after the retreat. It was in SE Oklahoma, one of my favorite places on earth. All free to me, PTL. We stayed in beautiful cabins nestled in Beavers Bend State Park. One was owned by one of my MBC friends. It's a mansion cabin. Three stories of gorgeous. John was there, too. He took a zillion pics and interviewed all of us again. I was not expecting to be interviewed, I hope he will edit out the "deer in the headlights" shots. No modeling, no gowns just camping type clothes. The real me. I don't know when my video will be ready and on U tube.
Meanwhile, I finally got my new kitchen floor installed. It's beautiful but a lot of work including all my appliances in my living room and dining room and den. UGH. It's all back in place finally. Love it
I'm so sad to hear about so many of you having so many problems with your liver monsters. I don't have any advice, just know I'm wishing the best for you. Hoping for a plan, TX that works for all of us. 💞
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Grannax, that is incredible, and I must admit that I am jealous with a capital J! I am so happy for you... what a wonderful experience!
I have looked for various sponsored retreats but haven't found the right one. I really want to go back to camp- singing songs and making s'mores around a campfire, bird watching, canoeing, horseback riding. Not that I can go horseback riding these days, but that's what I most wish I could do if only for a few minutes!
Please post a couple of photos if you can and I'm so glad you are feeling well!!!
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Kattysmith. They only have one retreat per year. There is a phone number for Say Yes to Hope. If you cannot find I will get it to you. Suzanne Lindley is the founder. I'm sure she would love to hear your story. Who knows, we might be modeling together in November. I would rather go horseback riding and be out in nature, too. But, being a part of say Yes to Hope has been a very meaningful experience.💞
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I saw some photos of the retreat on their FB page - neato! There was a retreat I checked out that sounded great, but you had to participate in fly-fishing and that just isn't my cuppa. I'm so glad you got involved with this; we deserve some perks while we're able to enjoy them!
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Grannax---- Glad to hear from you and that you are doing soooo well. Continue to enjoy life any way you can. And post pics if you can---the Retreat AND your kitchen remodel. Let us know when we can see the YouTube videos.
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HI All I am new to the thread...I have liver mets 3. 1.5cm 1.0 cm and 2.0 cm I also just found out I have bone met in my left hip and 1 in my sacrum. I just had my first PET scan on Friday and should have the results tomorrow. I started Lupron on April 30th. had 2 doses of Faslodex, Letrozol, Just started Ibrance last week. Next week I get all of those and also Xgeva. I am praying the Ibrance works for me. I wonder how long until, if it is working, we can tell? Like, will my back pain go away if it's working?
Anyway I welcome any advice you have especially about Ibrance.
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hi Nicole, so sorry you are joining us here. That really sucks. But let's talk about the good stuff. Sounds like you are on all the right meds right now. Everything needs a little time to work. You may get some pain relief early on, or it may take a while. I imagine by your next scan (which should be in three months) you will have your answers. In the meantime, assume it's doing it's job, and try to enjoy your summer a as much as possible.
I haven't been on Ibrance for a long time, but Ive been on all those meds you have mentioned. They are relatively easy to tolerate, although everyone's SEs are different.
ABeautifulSunset
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Thanks for the positivity! Yes I am praying every time I take the Ibrance that it is doing its job.
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Welcome to the club you never wanted to join. Sounds like you are very knowledgeable already. I don't have bone mets right now but I did many years ago. They can be very painful but usually respond well to the meds you are taking. If not, there is radiation that helps with pain.
Liver mets I have plus lung and chest mets. It still surprises me how little pain I've had the liver mets. I had a lot in both lobes and didn't even know it. They are stubborn in regard to responding to TX. Give Ibrance time to work. Then look into local treatment to the liver if TX does not work on your liver . When it was obvious TX was not working on my liver mets had y90. If you get to that point, several of us can give you more information on y90 and other local TX.
Right now it sounds like you are doing all the right things. You'll probably get even more specific info when your PET results come in.
Ibrance/ letrozole works very well for most of us. It usually causes fatigue but didn't keep me from doing anything I really wanted to do. I was on it for two years. I'm now on my third line TX Xeloda.
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For you ladies who did Y90, how sick did it make you? I'm over a week out from my second (they were two weeks apart) and not on any chemo until next week. But the fatigue is still awful, and I'm nauseous a lot and occasional vomiting (more like heaving). I keep thinking there must be cancer somewhere in my body that has grown and is making heave. Or I'm just having extended side effects?
ABSunset
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Grannax2 thanks for the post. PET results in...PRAISE GOD! Same 3 spots in liver and same spot on sacrum but the spot in the hip didn't light up. She said its because the PET won't show anything smaller than 5mm. I never thought hearing I have 5 spots of cancer still in my body could make me happy..but I'm not gonna lie, hearing they didn't see anything else..well that sure did make me happy.
Just wondering is Y90 - SBRT??? or something different??
So I guess I shouldn't be overly hopeful that the ibrance will work on the liver spots? I actually wanted to ask my doctor next week when I go if they would be willing to radiate the spot on the sacrum and the one in the hip?? I just think she wants to wait the 3 months to see what the meds will do. Is this something I should persist about? I welcome all opinions.
Nicole
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One more thing.... how do you all take the Ibrance? I was originally taking it in the morning with my Vitamin D3, Magnesium Citrate, Probiotic & Letrozole, but now I started taking it at dinner alone because I eat a bigger meal at dinner than I do at breakfast. Is all this ok or should I be doing it different?
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Hi Nicole. I am sorry you have joined us. It looks like you've started a good treatment plan. I would also join the Ibrance thread. You will learn so much about Ibrance and it's a very active group. https://community.breastcancer.org/forum/8/topics/828848?page=573#idx_17187
I was diagnosed with a 9mm liver met which I had ablated. I've been on Ibrance since February of 2018 and my liver remains clear. You'll find several other member still on Ibrance with liver mets and many with bone mets. It can take 3 or more months to work, which is why your doctor may want you to wait on bone radiation. However, I had my liver met ablated as soon as I was diagnosed. It was my decision and I saw a liver specialist and asked him to do it immediately. ~Kar
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y90 and SBRT are not the same procedure Nicole. Sometimes y90 is called SIRT. I think SBRT is kinda like cyberknife but don't quote me. The people on local treatment thread will know.
When I took Ibrance I just took it in AM and PM regardless of whether I had eaten. On Ibrance thread there is lots of discussion and advice on when and how is best to take it. Lots, of answers to your questions.
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Gran, thanks for that info. I wonder which is better? Is it something that is known?
I also wonder if anyone has itchy skin with bumps? I had itchy skin that looked like bites a year and half ago (before I knew I had cancer to the liver ) I went to 6 dermatologists they took samples and everything they could not figure out what it was...it comes and goes...they said it could be an allergic delayed reaction to something I am eating or inhaling yet I did all the allergy testing for every food...for gluten..even went completely gluten free for months thinking it was a gluten skin sensitivity (not Gluten intolerance - stomach) to no avail.
Then my husband said he read that problems with the liver can cause itchy skin? They almost look like hives or mosquito bites and no they are not bed bug bites or scabies I had samples taken 6 times and also my husband in over a year and half never had 1 itch nor my son or his fiancee who we have been living with them for over a month. All 6 dermatologist concurred it is not bug bites though they look and feel like that.
So does anyone know if cancer in the liver can make you itch?
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Nicole, I had a liver full of mets and never knew it..no pain, no itching, no rash. But in saying that, we are all different. The only way I found out is that the tumor cells ended up in my lung arterioles and I couldn't breathe.
Regardless of when you take it, make sure you take Ibrance with food. It is better absorbed with food, especially fatty foods. I eat yogurt and or cheese..sometimes for a treat, I throw in bacon. Just take at same time each day (or evening).
Your liver is very resilient and can be a working machine even with minimal healthy tissue. Please remember to drink water. Fatigue will be your biggest SE. My worst days for fatigue are days 27 - day 2. Don't be afraid if your MO suggests lowering your Ibrance dose because of decreased neutrophils and/or platelets. Labs are important at first to monitor that. The antihormonals come with their own SEs..muscle and joint aches, night sweats. Contrary to reason, walking helps that. Just move.
I am trying to help you as you are new to dx and treatment. Remember the current survival rates are dated as it is from cumulated data from years prior to publication. It does not include the recent advances made from targeted therapies; like CK4,6 inhibitors or HER+ treatments like Hercepton or PARP inhibitors for BRCA +. or treatments such as Y90 for liver. Triple negatives will soon hopefully benefit from immunotherapies. There is much hope in our futures.
So go out there, give your DH a big hug as you are in this game together for the long haul.
P.S. Please read Bestbird's Guide to Metastatic Breast Cancer, it will truly help with your questions. Search under her name.
Love ya BCO sister.
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SandiBeach thank you for that awesome post! We (DH and I) loved what you said about the big hug.
Can I ask you ....if I feel good with no side effects can my platelets and neutrophils be decreased or would I feel that in a certain SE? Thank you for the advice about when/how to take the Ibrance and about telling me why the dose might be lowered and not to be afraid, as I probably would have if you didn't tell me that. lol
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NicoleRod. For me, I do not have symptoms with lowered absolute neutrophil counts (ANC), but I do notice increased bruising with low platelets. Not everyone has decreased platelets with Ibrance. The fatigue is from decreased red bood cells/hemoglobin.
While on Ibrance, the new white and red blood cells plus platelets go into "suspended animation" or holding pattern while the drug is killing off the cancer cells..they just die in this process. The week off allows your cells to pick up where they left off and mature. That is why Neulasta does not work..the cells are there, they are just "asleep". This is how my MO explained it.
Sorry for holding the liver thread hostage. Should have posted this on the Ibrance thread.
I am easily confused on which thread I am on..
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Nicolrod, SBRT is usually indicated for single or oligometastic lesions (only a few of them) while Y90 is usually indicated for more extensive liver mets. Most people would only qualify for one or the other. Until Y90, we liver metsters with a heavy tumor load had no local therapy options. There are a few other options for those with one or only a few lesions. Glad you found this site. It is a wealth of information and support. As Sandibeach said, the liver can function uncompromised with only a small amount of healthy tissue - I was told at mets diagnosis that the liver only needs 10% to function. I at one point three years ago had a liver that was 70% mets and I had no idea - I had energy, was eating and running as usual and completely clueless. My liver markers, tumor markers and alkaline phosphatase were still within normal range although they may have climbed by a few points. Since then, my tumor load has been reduced and my liver has regenerated a great deal of healthy tissue. I am amazed at the capabilities of our bodies to bounce back from adversity! I have had extensive liver and bone mets from day one and have cycled through numerous treatments but have pretty much maintained my quality of life for the last 4.5 years. I still work full time at a demanding yet rewarding job. Few even know that I have mets at this point. There is hope and the circumstances improve year after year with all of the advances in treatment.
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