How are people with liver mets doing?
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Grannax,
My local treatment friend! I am SOOOO sorry to hear this news. Have you felt differently, or did this come out of left field? I hope you can talk with your IR very soon to find out the prospects for another Y90. That would be first, I would assume (in addition to the biopsy).
NicoleRod has been on halavan and she has been posting the last few days about success on that treatment. She should be able to give you some more info about it, if you want it right now.
Please let us know what's going on with you, and please hang in there. You have been such a strong person in going through this -- try to muster that strength once again. Thinking of you and hoping you get some answers soon.
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Grann I am so sorry for your progression. Halaven is great for liver mets I am on it. We should really go to the halaven thread so we don't hijack this one... here is a link and I will post to you in there
https://community.breastcancer.org/forum/8/topics/...
I do have a question though...why is your liver able to be felt and hard and painful? Do you know the size of the tumors? Or is it like that from the Y90?
Nicole
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Moth sorry to hear of the lung met, but it sounds like your MO is on it. Hoping for better news soon.
Grannax, what a gut punch on the liver results. I've never done Havalen, so can't help you with that, but someone with experience should be along. Glad to hear y90 may again be a possibility. Mostly want to reach out with a big virtual (((HUG))).
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Grannax, So sorry to hear about the increasing mets. Not surprised you’re shocked, I think many of us who have known you here are too. Hoping the biopsy gives some useful info. Hugs to you.
Moth, Sorry for you too, to get bad news about the increasing lung met. I hope the trial drug can be continued and that the IR can advise on some local treatment. Sending you hugs too. ( I think i saw you post about benefits of massage. I’ve had some recently too and agree with you. Maybe when you feel like it a massage can be a nice escape from all you’re dealing with.)
I know we have to be prepared for good news and bad news but the bad news still hits us so hard here. I feel for everyone struggling here.
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Moth and Grannax - my heart and prayers go out to you both. This MBC roller coaster is so hard!!! I know there are paths forward for you both, so keeping hope and keeping you in my prayers. We are here for you.
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Nicole, with those good results for you, I will forgive Halaven for taking so much of my hair away the short time I was on it last year.
Grannax2, nooo! That is discouraging. Let's hope Halaven does a great job for you as it has for Nicole. Here is a thread specifically about Halaven and hair:
https://community.breastcancer.org/forum/8/topics/873374?page=1#top
So moth, the appointment with radiation oncology was about zapping the lung tumor, then? That was rough, hearing from them before you had your scan results. Atezo is working on your liver mets; I really want you to stay on it. I like your onc's plan and her willingness to lobby for you.
Bev, waiting to hear your Tempus results now. Let's hope in this case Tempus will fugit...
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moth, I hate it that stubborn lung met is throwing a wrench in the works for you. It just doesn't seem right that you could lose access to something that is clearly helping your liver mets. It sounds like your MO is really working to find a good solution.
Grannax, Sending hugs your way.
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Uh... So hard to get these news:/ Moth, Grannax, Bev, others... once you get a plan how to move forward, you'll feel better. Please never forget, that previous treatments could not only make disease more resistant but also more vulnerable as by trying to avoid certain blocked paths it can open a path to be killed (Nicole serves here as a recent example). You all are stronger than any of these crappy cells, and you'll give them a damn hard time... I think I posted this before but Donna's story is very interesting and "mind-shifting", therefore let's not loose hope (I both love and hate this word): https://www.onclive.com/view/looking-forward-to-a-new-wave-of-breast-cancer-therapies?p=2 Saulius
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Shetland...LOL about "forgiving Halaven"...lol that was cute. Yea...I could care less about my hair anymore.Truth be told though...I do still...NOT FEEL FEMINIE with out my hair, but I think the bigger thing is my eyebrows
. and eyelashes..but I did get these tattoo eyebrows they are like $3.00 for the whole pack and they go on just like little kid tattoos and they look SOOOOO REAL like they are individual hairs its amazing!!! 0 -
Grannax- Just logged on and read your news. Damnit!!!!!! So sorry you are having to go thru this. I do not know about Halaven, but I see you have links to read about it. I am glad they are doing a biopsy to get more information. You hang in there girl. You are strong. You are loved.
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Saulius,
Thanks for the shout out, but I'm doing fine right now (other than still being tired after the microwave ablation last week.) My IR isn't sure that the lesion he ablated hasn't been "hiding" all along, nor am I -- my tumor markers never really dropped to normal after the first ablation, and were edging up since January, and in fact I'm guessing they may have been tied to that wayward lesion so I'm happy it's gone. Right now, I'm still on Ibrance and letrozole. I haven't had a CT scan since May, and my MO wants one prior to the end of the year so then we'll see what's going on in the bones, but I think the consensus was that the Ibrance/faslodex was healing those.
SP,
Clever word use -- that you hope temps does fugit? Cute. I'm guessing that maybe the Tempus report will come in maybe next week? My MO will let me know. Interesting info from the basic biopsy, though -- HER2 via IHC is still negative. I was worried that on a tissue biopsy, things would have flipped, but I don't think so. Better dealing with the devil you know rather than the devil you don't know?
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Grannax and Moth, I'm holding you both close in my thoughts and heart today. It sounds like your doctors have some good workable paths forward and we will be with you all the way.
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MOTH and Grannax- tears of frustration but prayers for favor In getting your next steps in line as the best TX
Dee
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I cannot tell you how much I needed to hear these words of encouragement from my support team. Last night I dreamed about how ugly my new hairstyle will look on me. Bald on top, stringy, long , white hair in the back, sides and front. OMG. Maybe I can still put the stringy, white hair up in a ponytail with a scrunchy to hide the baldness? I'm trying to laugh a little this morning about how ridiculous that would look.
For some reason all I can think of is my hair today. I know there's the other thread and I will get on it. It's not like I haven't done the bald thing three other times. I know the drill and I don't want the drill.
I expect to hear this morning from my IRs office about my BX. I know he talked directly to my MO late yesterday afternoon. I guess there's a slim possibility of tomorrow but it sounds like it will be next week.
I'm wondering if he will combine BX and mapping in my procedure. If he has a little yittrium left to use on me, he might do that. Yes, I think he would want to do y90 before I start on Halaven, although I'm not positive about that.
I'm really feeling like it's a whack-a-mole attempt this time. My last y90 only gave me a year. The first one 18 months, so what would the third one give me? Six months?
I know I'm at the end of my road on y90s. I'm trying to have a little conference about this chemo working on my liver mets but it's hard since no other chemo has touched my liver mets. So, how do I do this? I don't know.
Sorry I'm so down but my fighting spirit seems to have disappeared this morning.
Nicole, when the liver is not full of mets it is soft and the MO can hardly feel it on exam. When my mets have been enlarged she can feel it and describes it as feeling hard. So, my exam correlated with with the scan results. Bummer. Yes, I've been having symptoms but I was blaming it on other things. I thought my reflux was rearing its ugly head again. The feeling of fullness, bloating and not wanting to eat much has been happening too. She says these are symptoms. It also explains why the MRI belt thing left me feeling like my ribs were bruised. It wasn't my ribs, it was my liver complaining.
It's only day two after hearing the news, who knows what day three will bring. I need to keep my mind on first things first. Hopefully, I'll be better at it tomorrow. Keep encouraging me friends, I need it.💞
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Grannax... just FYI...I have been having terrible bloating after I eat and acid reflux ....and my tumors shrunk...so go figure...mine is probably from the chemo...well I actually KNOW the GERD is from the chemo...because I keep losing my voice and I do not want to take Nexium long term....
Do you have the sizes of the new tumors??
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Okay, Grannax, in relation to your closing thoughts on your post -- I'm here to encourage you. You are a strong person and you've faced this disease with courage and yes, that strength. DO NOT give up on this. Happy that the IR is going to contact you, hopefully today. That will give you some clarity on the Y90. Once you get that figured out, then you can move ahead and figure out the best treatment (which may very well be halavan.) You have great doctors, and they will guide you.
Hang in there. You've got more fight left for sure. Sending good vibes your way.
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Grannax, I was very unhappy to hear about your progression. That being said, I know that you are a strong, determined woman, and you will be able to face whatever comes next. Losing our hair is no fun. I lost it all with Taxol last year, had started to grow some back, then lost it all again last spring from Adriamycin. My hair is beginning to grow back even though I am on two medications that cause hair loss (Adriamycin and dexrazoxane), but my hair is beginning to come back. It is very short, very thin, and has bald spots. Yesterday my dh and I went out for a ride, and we saw my 14 year old grandson and his friend walking from school. We stopped to offer them a ride. Would you believe that I had forgotten to put on my wig when we were going out? I wonder what my son's friend thought when he saw my head. I can only laugh at this point. Maybe you can find a wig in your color that you can wear in a ponytail. Nicole's long wig looks quite natural. The important thing is to get into the new treatment plan. I do hope you are a candidate for a third Y90, but even if you are not, I want those nasty tumor mets GONE!
Moth, I was also unhappy to read about your pesky lung met. It is frustrating to see a treatment work on some tumors and let others continue to grow. I hope you have answers soon. It sounds like your MO is very attentive to the situation and will follow through to find the best plan available even if it takes extra effort.
BevJen, I hope you continue to recover from the procedure. Don't push yourself ttoo hard. Healing takes time, and you need to take care of yourself.
D37, The weather is pretty cold and dreary up here in NH. I hope you are staying warm and dry. Are you prepared for a little snow tonight? I was shocked to hear that a PA reviewed your scan results with you instead of your MO. It sounds like the PA is not skilled at delivering such information and shouldn’t have done it. Dana Farber is an excellent place for treatment, but you know that. My DH went there (and Brigham and Women’s) when he was treated for kidney cancer 5 years ago, He was diagnosed 5 months after my mbc diagnosis. He still goes there for annual scans and nephrology appts. I hope you can change insurance companies so you can receive your care there if that is what you prefer. You will be getting the best possible care there.
I am sorry for this long post. I have more to say, but I will do that later.
I have scans scheduled for Monday and hope for good results.
Hugs and prayers from, Lynne
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Moth
I was in school full time when I got my diagnosis. I have a year left for my degree in nutrition. I decided to finish out the semester and then see from there. I’m sending all positive thoughts your way! Im sorry to hear about your lung progression but it sounds like your Mo has a couple of plans of action!
Grannax, sending {{{hugs}}}} and strength your way! From reading everyone’s post you are going to kick this in the a** !
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Grannax- Allow yourself the thought that it is okay that you are feeling down today. Sometimes I think we think we have to be strong all the time. Well we don't. It is okay to feel angry, scared, sad. I know you will rise again and fight another day. For today allow yourself to feel.
50's girl--- Pocket duty for you on Monday.
Leftfootforward-- News on your MO visit?
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OK ladies...we just got done with the telemedicine appt with the IR...WOW A LOT OF INFO!!!!! and I certainly do not remember even half..LOL
So it turns out that newest tumor...the one that went from 1.1 to 1.3 has NO uptake what so ever...she feels when she gets in there its gonna be totally dead (she did offer for my sake, bc I want her to, to blast it with Y90 anyway) lol
If she biopsies anything it would be the biggest tumor the one that went from 4.0 to 2.7...it is also the only one out of the 3 that even has any uptake.
I am not gonna lie I was disappointed not to be able to biopsy the newest..but she said if they are all responding to this treatment (and they are) that, that usually means the tumors are still the same NOT 100% but most likely. She is going to talk to my MO today..and see if she wants me to have 1 more cycle of Halaven which would be on Nov 9th and the 16th... if my MO doesn't care then we will get me in next week for mapping then I will do chemo on the 9th then go back on the 20th for procedure.
I did ask about her using saline to separate the colon from the tumor to blast it...she doesn't prefer to do that based on where my tumor is placed plus the Y90 is better (in her opinion) all the way around especially for the liver itself.
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Grannax2, we are here when you share good news and we are here when you receive news that is frightening.
You have a good team. They want you to live and will not give up.
Each day, when you awaken, find 3 things to occupy your mind. One of them is to just get out of bed...then find something that you like to do. Put aside laundry, dishes, cleaning for now. Can you order food to be delivered?
The week of progression news is harsh. We all have been there and feel your pain. You will get thru this. Halaven is good from reading those who have had success stories. It is on my list of txs.
I see you with a long hair wig..maybe some cool color to brighten up your spirits!
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“I know the drill and I don't want the drill.“ Ha! (Rueful smile of recognition.) I hear you, Grannax2! I hate what cancer treatment has done to my appearance. I hate progression (for all of us). These hard times get me down, too, but somehow after spending some time with frustration, fear, sadness, etc. I keep going almost in spite of myself. You seem to have that sort of determination, too. My current favorite motto is a Japanese one:
Fall down seven times, Stand up eight
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Sandi, can you elaborate on this? Give examples? “Each day, when you awaken, find 3 things to occupy your mind. One of them is to just get out of bed...then find something that you like to do. Put aside laundry, dishes, cleaning for now.“
My counselor from the cancer center pointed out that I am a person who is tuned in to beauty, and it seems like I am starving for it. I focus so much on trying to accomplish the necessary things like chores and case management. She told me to seek some beauty every day. That is most doable when the weather is nice and I can go outside. But I am supposed to find other ways, too. I used to go to live music and dance performances and art museums, and I ought to seek them on video instead. I guess I have to block out the dust bunnies and other problems that hang around the room so I can get immersed.
Can anyone relate?
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I got word that Roche approved compassionate access for me so I can keep on getting the atezolizumab! Yippee!
Stillhavehope, I hope you get to finish your program. I'm 18 mos short of my BSN (year round program) and they're keeping my spot every semester but realistically I can't see going back ..
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moth: *&^*. I was so hoping to see overall good news. Liver news good. Lungs not so good. Sulking with you. The whole thing reminds me a Scots Presbyterian who would says things like "Sure it is a fine day today but we will pay for it tomorrow" Can't anyone get a real break!?!
Grannax2: I am sorry to read your news as well.
Shitty news club
Hugs to everyone.
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Okay, SP and others seeking beauty -- I live in the DC area, and if you are not familiar with the Smithsonian Museums, they are wonderful and free, and sometimes I think we forget about them. They have a YouTube channel that shows, for example, all of their outdoor gardens at different times of the year. I don't have the link for that. But here's the link for those of you who might want to participate in one-off programs or weekly programs offered by them:
https://www.si.edu/events/online
I participate in meditation sessions as often as I can -- only a half hour each on Mondays, Wednesdays, and Fridays -- they are free and absolutely wonderful -- offered via zoom. They are sponsored by the Smithsonian Freer/Sackler Museum of Asian Art, and on Fridays, they do an art focus. A curator comes on and describes the piece of art -- for example, a Buddhist statue. The person leading the meditation then talks about the art piece as well and works it into our meditation. Bingo -- beauty and serenity at the same time! I was tuned into this by a woman in my MBC discussion group and I think it's wonderful. You should be able to register from anywhere in the country, and it's a nice part of my days on M, W, & F.
Public Service Announcement!
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Moth,
YAY for your approval. That's terrific!
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Moth! What good news! Fantastic! Three cheers for moth’s oncologist! I am so glad you can get atezo and zap the tumor, too.
Thanks, Bev, I will check that out.
Another wry chuckle at Elderberry’s quote "Sure it is a fine day today but we will pay for it tomorrow"
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omg elderberry, you made me giggle. That's how I usually think honestly 😂
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A lot has been going on with everyone on this forum. I will add my recent news - my MO told me on tele-health video chat that the biopsy of the liver shows that the cancer cells have mutated to triple negative, androgen and PDL1 positive. Original tumor was ER/PR positive, Her2 negative, androgen and PDL1 negative. WOW! Mind boggling.
This explains why all my anti-hormone treatments this year have been failing. My current treatment (Piqray+Femara) is not doing much for my liver mets or bone mets. So far, every scan has been showing slight progression. I also have some ascites in my abdomen and pleural effusion in my right lung. So my MO wants to start me on immunotherapy+chemo combination soon. Don't know if I'll qualify for this. Plus I have to start on anti-androgen oral tablets (don't know the name yet). I am so glad the biopsy threw some light on why my treatments were failing but totally did not see this coming. I am still digesting this news.
Did anyone have a similar experience with tumor mutation? We are still waiting for the results from genetic profiling done in-house at MSKCC. That will show if there is any change in biomarkers.
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