How are people with liver mets doing?
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Hi all, just an update after seeing MO. She gave me a lot of options: aromasin with afinitor, xeloda, a taxane (she didnt specify which one). She even indicated she could be convinced to keep me on ibrance/faslodex because the progression was small. I asked about the aromasin/entinostat trial, but it had just closed. But she offered to contact a neighbor hospital to see if they had slots. She had also contacted a colleague about another trial testing a new mtor inhibitor but that trial wont open for another 4-6 weeks.
So I was overwhelmed and felt a bit unprepared, even though I thought I was. I almost felt like she didnt know what to make of things. We are doing another biopsy and she will send to caris too. I am starting exemestane and she also prescribed afinitor, but instructed me not to begin it until we decide on what to do about a trial. I brought up localized liver treatments and she wasnt very excited. But said i could talk to IR when I do my biopsy consult.
So I guess we’ll see... I wish there was a crystal ball on knowing exactly what to do when...Thanks again for all the help and kind words, it means the world to me!
Jamie
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jamiemarie - I'm glad you have lots of options. That will give you strength to get through this. If you take Afinitor - please look at the Afinitor board as there are a few things to be cautious of when taking that med, and it doesn't seem to work for a lot of us. I nicknamed it A-phonytor. The trial sounds interesting if a slot opens and of course you could maintain a little longer on your current meds (since progression was small) until you and onc are sure of next steps.
(()) C
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Incognitomom, it sounds like you do need a new MO if yours is doing nothing. That is inexcusable. i think there are others in Boston on this forum. Dana Farber is one of the best and there are other excellent hospitals in Boston. Keep us posted if you have some luck transferring. When do you get out of the hospital?
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Incognitomom - I am so glad something I said has lifted your spirits or hope. You sound like the corner is really tightening. Have you found a new MO to see you right away at the hospital?
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Bluebird: Thank you for taking the time to respond about the Shaman. You gave me assurance that I made the right decision. Nothing is impossible. I'm hanging on to that. Are you taking anything for your pain?
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Hey ladies, I just wanted to check in. I am a long time lurker, rare poster. I am trying to update my profile on my phone, but it is not going well. I was dx 07/15 and spent 15 months on Ibrance, 2 months on the Kisquali trial before it was released and now closing out almost a year on Xeloda. It has been very successful and I have had regression on every scan I have had, which is every 2 months from trial protocol. I am down to a single liver met and have an appointment with an IR this month to discuss some options. I just wanted to say thank you so very much for all of the wonderful information I get on here. You are all so smart and kind. Big hugs and thank yous!! Alissa
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Thank you Bluebird-DE and JFL!!!! I should be released today and I've already called new oncs at Dana and MGH. My current onc is truly doing nothing, so it's time. There must be SOMETHING to talk about or explore. Thank you for your support! I hate hospitals and can't wait to go home.
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incognitomom - Get yourself out of that hospital and over to one of the several incredible NCI cancer centers in your area. ASAP. And report back.
Even at those major centers you can run into a dud. So keep moving until someone's got your back. They are out there.
>Z<
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Here is the response from Immunomedics.
Thank you for your interest in Immunomedics IMMU-132. Our target for filing to the FDA is the end of the first quarter. From that time there is a review period of up to six months or longer. The phase 3 study is open and is enrolling, but it is randomized with a 50/50 chance that you would receive active study drug. At this time, there is no way to receive iMMU-132 outside of the clinical trial.
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Kay - I take ibuprophen as needed, x strength 2 pills. Seldom need them. When it was intense 6 weeks back I was rxed morphine which I have not used to date. And my new MO rxed fentanyl patch which I have yet to use. Warm water bottles sometimes. But I am also one who does not do well w pain meds so that is part of the low use.
Incognito - Yes to going home and onward to the right MO. Godspeed!
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incognitomom so sorry you are dealing with such a difficult situation. as all your friends have said it here, def time to leave the Onco. But i know, you could have a hard time getting the attention from the super docs on the highly regarded institutions in your area, as Z said they gotta have spunk to push something good your way. Would you have a doc that could help you to get there faster? Hope you get good ideas real soon.
Bluebird is so sweet of you trying to wake up the sleeping bear! I looked at your pm calling for help for incognitomom and came to this thread right away, the world could use friends like yourself. Re: Fentanyl just be aware some people may get rash or itching from it, if that happens to you, you will know it's from that. They could then maybe lower the dosage.
Kaylynne did you read my pm to you? And you are saying they say randomized? Hmm they never told us that. I hope that even if it did not work for Dani, she was actually on something for 3 months. So what's your plan?
mama2twins thanks so much for sharing great news. It gives hope. So happy for you.
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momall: I saw your PM, thanks! But I decided to send an email directly to the drug company. I knew from when I investigated last time that there was a 50/50 chance of getting the drug. I don't have a plan yet but I meet with my oncologist on Thursday to discuss.
bluebird: I don't do well with pain meds either. I get too sleepy or weepy!
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Pain meds for me, if rxs = migraine, vomiting, heart palpitations, high anxiety, crazy feeling. And forever they are trying to get me to try this or that. After getting to 60 and trying ENOUGH I just say all but Ibuprophen, let's work with that. Everything I have is child's dose. My sister and brother too. One time DB took a valium and wasa to be driven to the dentist for oral surgery. He ended up sitting in his chair and DSIL didn't even know what to do w him but let it wear off. He was in lala land. Once at at ER he was given a pain pill for well pain and he had hallucinations and was talking to people not there. At home he was talking to the doctor not there. Well I don't want what he's having either. DS was taken in an ambulance twice from simple pain meds, one dose is all it takes. And don't even get me started on epinephrin. I blacked out at dentist. She fainted then puked. Dentist got rid of us.
Makes me wonder how far I will get with dealing in meds and liver pain if worse comes to worse.
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Kaylynne thanks for sharing the info from the email regarding Immu132. That is the same the trial doctor told me at Sarah Cannon minus the 6 month or later wait period which majorly sucks. So the soonest would be September and when does anything get done the soonest. Maybe there's some hope since it's supposed to be on the fast track. Maybe if you find a good chemo to shrink that big tumor you can try for the trial. If so don't forget to contact me. I know exactly what they're looking for so you won't waste yourself time like I did.
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JFL, Bluebird-DE, Zarovka, momallthetime,
Thank you for your thoughts!!! I was released from the hospital yesterday (horrible, horrible experience overall) but have new ONC starting soon!! Super-aggressive go-getter at MGH - Dr. Isakoff.
I am so happy to have someone that might try something. My current onc hasn't even checked in on me yesterday or today. I think she has already written me off.
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Incognitomom - To be written off is a terrible feeling, especially when you don't even know that could be a factor. If we are still we are not done yet.
Am glad you are out of there and moving forward the way you want to.
Rough liver day for the first time in over a week. Think I slept w pressurefrom my ribcage for too long. Woke up w the pain. While healing (or whatever it is) I have to be more careful.
That said - I did Aldi's today in the new expanded store. And after with my walker I headed out and to the vehicle in the pretty white snow. It fgelt so good to walk out into the snow, able to breathe and not have an attack like last winter. And to be in the snow. I have not been in the snow for well over a year except ducking into the vehicle and not breathing cold air while doing so.
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Bluebird - You are one strong woman.
>Z<
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Bluebird you are a warrior indeed!
Incognito, so sorry you have a crappy experience at the hospital. My heart always hurts for these occasions with you ladies.....Glad you are out and on the way to a new Onc.
So mixed results with my scan but overall not too horrible. Got a minor amount of some new scattered lesions in my liver but the big one has remained stable. A few minor new sclerotic lesions own bones. Everything else is unchanged. So I don't know if we will stay with Xeloda or not. will find out Friday. My big worry is the ascites. Need to research if there is anything that helps that?
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artist - It's hard to know what to do with that. Interested in you thinking process. Hugs and great waves of support as you work through to a decision.
>Z<
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Artist, on balance it sounds like the results are in the "stable" category, no? Good news the big liver lesion is stable. Aren't sclerotic bone mets a sign of bone mets that have healed? Keep us posted. Someone needs to come up with a local treatment for ascites themselves and not just treatment of the symptoms (i.e. draining)!
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Artist, I’m glad almost all the news is stable. Hope you can agree on a plan that makes you feel good. I worry about your ascites too.
My scan last week was mixed. Bones are stable but liver is definitely worse. I’m having a biopsy on one liver met Monday. There is one near the surface, so hopefully it won’t be too hard to get reach. My HER2 switched on me about 3 years ago and since I’ve quickly failed several treatments this past year, it’s time to check again.
Hugs to you, Artist.
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Kaption - hugs and support as you figure this out. If it switched again you have a different raft of options.
Kayleen - so much for the asparagus diet ... check out this article.
>Z<
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Z-Thank God I only had asparagus once last week instead of every damn day!
Bluebird-Sorry about your pain. I've been waking up in the night with it too. It's the small things I enjoy. I am glad you enjoyed the snow. Some friends and I are going to Tenkiller Lake this weekend. We've rented a 2 bd cabin with a fireplace. We won't have snow but we will be in nature. I am hoping the weather is nice enough to walk about the grounds and shoreline. Besides my daughters, these 3 are my favorite people to spend time with enjoying each other.
Today I meet with my onc to decide on the next course of treatment. I have my list of options and questions. It's been 8 months since original diagnosis. I long for the days when cancer wasn't on my mind 24/7.
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Incognito-so glad you fired that MO, and got a great sounding new one! How callous not to have cared for you appropriately. Recover quickly from that horrendous hospital visit.
Bluebird-love your story about the snow. I have had similar experiences lately and they do feel magical. I think we are all so much more tuned in to the simple wonders. Sorry to hear about the liver pain. It's still such a strange concept to me to have "my liver hurt". I had a few days of it last month and it was more than disconcerting.
Artist-what a confusing report. I agree with others in that it seems to lean towards stable; thinking of you as you get it sorted. Just curious, how long were you on Fulvestrant?
Kaylynne-so pleased that you are getting to your MO today; wishing for you a path forward that eases your mind. The weekend at the cabin sounds excellent!
Kaption-thinking of you as you go to biopsy land. May it be a smooth procedure with excellent samples processed ASAP by a good pathologist.
I'm still in holding pattern with Fulvestrant. Some days quite achy with ? tumor flare. Scan in March.
Thinking of you all and hope today is the best it can be.
May the force be with you, MJH
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Kaylynn I practically grew up on Lake Tenkiller. I think it's the prettiest lake in Oklahoma. We also had a cabin on Lake Eufaula but it doesn't compare to Tenkiller.
I hope you get a good plan from your MO today.
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Regarding the latest revelation about asparagine and the spread of breast cancer, if you consider that the amino acid aparagine is found in both plant and animal proteins, whey, nuts, starches, and grains, and is a non essential amino acid because the body synthesizes it from other amino acids, its going to be pretty hard to use diet alone to control it. Asparaginase which blocks its internal production has been used for treatment of lymphomas since the 1970's and is also used as a veterinary medicine for the same purpose. Seems more likely something like asparginase will play a role in treatment, if the research is applicable to humans.
Hard to imagine what they fed those poor mice to deprive them of asparagine, and what the health consequences would be for a human. Nevertheless, they are putting together a phase 2 clinical trial to test the hypothesis that a diet low in asparagine will lower the levels in the human body. Got to be a pretty crappy diet if it excludes milk, eggs, meat, fish, soy, grains and starches.
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Yeah, that is one dumb clinical trial- people without cancer will voluntarily eat a diet low in exogenous asparagine to see if that is sufficient to lower levels in the blood, and then if it is, try it out on cancer patients to see if it can prevent/delay metastasis? Instead of taking MBC patients and injecting them with L-Asparaginase and seeing if it can prevent the spread of new mets? dumb and dumber...
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Re: the low asparagine diet. I'm going to go for it. So far, it excludes meat, fish, soy, asparagus, legumes, nuts, and dairy. Some potatoes are implicated, with the exception of "The American potato varieties Kennebec, White, and Fingerling Ozette and the Italian potato varieties Agria, Merit, and Marabel had very low levels of both asparagine . . ." http://onlinelibrary.wiley.com/doi/10.1111/j.1365-...
I've been doing some research though, and it appears that egg whites are relatively low in asparagine. Also, various enzymes can convert the asparagine into aspartic acid during the cooking process.
I've been trying to get my hands on the enzymes that reduce asparagine, as they are part of commercial food production to reduce the formation of acrylamide, of which asparagine is a precursor.
What the heck. I could live on fruit and veg anyway, so this won't be too horrid, and will give me an excuse to splash out on artichokes.
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Hi Ladies,
Robin (rpoole) is in the hospital. Zarovka has kindly opened a new breastcancer.org thread for her entitled "Thinking about our Robin (rpoole)". I wanted to make sure that people on this thread saw it. It is located at:
https://community.breastcancer.org/forum/8/topics/862322?page=1#idx_4Thanks! Theresa
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Jamiemarie, so far I like your onc. She talked about options, is looking at trials for you, ordered the Caris test, and is willing to set up an IR appointment. Just don’t let her make you make a decision on your own if you would rather have expert advice. Ask for her thoughts.
Alissa, what great news that you are down to a single liver met and will now look at local treatment for it. Yes!
Kaylynne, have you and your onc considered Keytruda? It is an approved immunotherapy. (Am I thinking clearly here?)
I am so glad to know you will see a better onc, incognitomom. Isn’t there a rule or law that gets a doctor in trouble for abandoning a patient? Not that incognitomom should spend her energy on that issue right now.
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