How are people with liver mets doing?
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Momall- I would definitely talk to Dani's MO. Maybe Dani can take some supplements? Maybe even ensure. There are healthy foods that have lots of good fat-avocados, almonds,cashews, nut butter ,walnuts, seeds, whole eggs etc. How is she tolerating her treatment? Is she nauseous and that's why she's lost weight? See what her MO says.
Sending you hugs,
Babs
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Lynne I know. you have been through so much. You know really, I should be a skinny pickle. All jokes aside. Some ppl when they go through lack of sleep, lack o appetite, loose some weight, me nada! All for naught. just gotta laugh sometimes. What's your next step, scans treatment changes? How is your hubby? How is he taking this? Helping you out?
Stephanie, thank you so much for your quick and good response. I tell you, she has not had much of an appetite for a long while now, she eats when she wants. But she is scared of eating sugar and white flour this last year, so she is more limited. And she does not like wheat. She tried that. She eats infrequently, only when she is hungry. If I say something about that, she gets very upset. To be perfectly honest, part of it has to do that she does not want to see herself "as sickly" so she does not want to entertain a real way to combat this. your recipes of foods seem to make a lot of sense to me, but she rebels. I could ask for doc to approach her next week and suggest a nutritionist next week. But they cannot use words as "in your case" she will ram them down!
am afraid it's cachexia because she had this lack of food delight for awhile now, and only now she had this drastic weight change.
Babs, she is not nauseous. Well I sent an email to MO, no answer! I am gonna call tomorrow. The foods sound just right, I gotta get it across to her. Thanks.
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Lynne, I am so sorry you have to join us here but nice to see you! Really read up on the Faslodex thread for tips on the shots. They weren't so bad for me at all.
Thanks gatorgal! If the news is bad I hope I am over the meltdown by the next day. I am having my first meeting with my new principal that day and already hate to spring the news on her that her secretary has cancer...
Thanks Z, I think the Spirit is working as so far I am doing OK. The worst part for me is the next day, waiting in the room for results and when she walks in, is she smiling or looking morose? I HATE that part beyond belief. Then if it is bad news the tears come from both me and DH. But I am trying to hang tough and remain positive even if it is progression...
gramen, that is good news! You'll take it right?! I agree that is is very disconcerting to be the one in the driver's seat regarding such a complicated disease. I definitely wish there were more definitive answers.
Thanks babs!
Hang in there Mom. You are certainly traveling a tough road. I hope the meds start kicking in too and that maybe her body will adjust to everyting and get her appetite back. Most of my family including my sisters would rather skirt the topic as well and keep things light. I am glad i have this site to "talk" about things for sure!
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Mom, someone has probably already recommended this but when I started losing weight, due to liver pushing against other organs, I started drinking the high calorie, high protein ensures, two a day, which was 700 calories. I also made a smoothie for breakfast with an ensure and added fruit and ice cream. Had little puddings several times a day. Oncologist prescribed megace which increased my appetite. I went from 110 to 124 in about 4 weeks. I was in a panic, as it sounds you are, about the weight loss and just tried to eat little things all day long. As Stephanie said, I was worried about wasting away, and I'm so thankful for the turn around. My dh was constantly asking if I wanted anything and that did kind of tick me off. LOL! I know his intentions were the very best but I was doing the best I could! What a roller coaster we are on.
This site has really picked up. Wish I could address everyone but know you're all in my thoughts as we all do our best to kick this cancer to the curb
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hi all! Had to share, attended last nite the monthly meeting for my local bc support group for the first time since stage IV diagnosis...yikes. the lady sitting next to me asked me if I was cancer free, "right"?...Im a terrible liar and had to quietly tell her, no, I'm doing chemo right now, crickets....at the end of the meeting another lady comes to ask how my reconstruction surgery had gone, again, I couldn't hide my feelings, told her reconstruction is the last of thing on my mind, I'm doing treatment and stuff...yikes, her face of terror...I start making my way out, one of the group leaders approaches me, I can tell she knows, but again, yikes, that pitty look, big hug, rubbing my back... triple yikes. What a disconnect and sad thing, glad I found BCO!
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Gramen, that was quite an experience you had at the meeting last night. Many people just don't know what to say. I can only imagine what it would be like at the bc support group. I am sure many of the women there are unaware of the possibility of a recurrence or, worse yet, metastases. Until last year, I was naive about mbc. What an education I have had since then. Oh, and that pity look, ugh. We don't need that. I would not lie to people either if they asked questions although I have avoided telling many people about my diagnosis. We will always be here for you, and I promise there will be no pity looks coming your way.
Lynne
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Lynne,
. I'm ready for the weekend! Yesterday was a mentally tough day dealing with humans :-) our admin at work called and said if she could ask about "my cancer" because she's working on the health insurance renewal. She said: "you are in remission right?"and "what stage was it?" I tried my best to keep it together and said I'm not comfortable sharing details if i could talk to the insurance broker directly to see exactly what he needed. He noticed I was hesitant so promised confidentiality, so I went ahead and told him I'm living with stage IV and will be on treatment indefinitely...he said, oh, you will be in my prayers and went on to insurance options
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Wow, gramen, I didn't think that an employer had the right to ask about medical conditions unless it was related to accommodations needed for disabilities. It sounds like you handled it well. I am willing to bet he wished that he hadn't asked. I am sorry you had a bad day. At least you have the weekend coming up. Enjoy
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I keep gravitating to this thread. What a real bunch of extraordinary ladies.
Zar sweetie, what's up with your results? Any advance? You also have to beg and beg, for something that should be so common for these places.
Gatorgal thx for the info. How to convince her to have ensure? She equates it with my mom who was 95.I know it could help. I am waiting for Onco to call back and give me her view. Babs you mentioned the supplements also, so I am asking about that. Like everyone has said over here and in other threads, it's a constant waiting game. Always being courteous to the secr (the gatekeeper!), and then begging for the Queen to respond to you.
Gramen totally get you. That's why Dani does not want anyone to know. With her sibs, they are there if once in awhile she comments on her hair not really growing back, (last chemo was in 2014, and she barely has a pixie look), but otherwise she does not want pitty looks, or rubs in the back! How about just having at least a stage IV gathering? There is no point in mixing the 2 breeds! Much different concerns! Here, here for a peaceful quiet weekend.
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Momallthetime,
Wanted to share I've lost at least 15 lbs since March as well, Drs aren't concerned and I know it has to do with the stress...I'm eating less (stress/anxiety) and when I do I try to better choices...maybe Dani is up for some indulgent but healthy smoothies that won't make her feel guilty? You can sneak in there some healthy fat with yogurt/avocado/cacao/etc...
Also, you are correct, the navelbine/herceptin/perjeta combo isn't very common. Most of the studies were with taxotere/taxol...in my case it was a suggestion from a 2nd opinion consult I had at Dana Farber in Boston, Dr said he would start me with a mild chemo like taxol or even navelbine. When we came back home, the oncologist was ready to start me with taxol/herceptin/perjeta and my partner brought the navelbine (I think he was thinking about hair loss)...Dr was like oh yeah let's do that....I debated and was scared it might not be as aggressive/effective but now I'm starting to understand that quality of life, less toxicity is important as well...
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Hi Mom,
Woke up thinking of you all and realized what a terrible bind you're in. You're charged with being upbeat, positive and reassuring about Dani's situation, while also responsible for surveying current and future dangers from disease, treatment, doctors and family upset. It must be nearly impossible for you to navigate the emotional landscape, never mind the practical issues.
You say that Dani doesn't want to know more about her situation and prefers to focus on manageable details like hair loss, rather than loss of life.
I so get this and yet I do hope that at least part of her wakes up and draws her loved ones together for support.
There is always hope, though it may shift from care to quantity of life to quality of life to quality of connections with loved ones and comfort.
On the practical level, I understand Dani's avoidance of sugar and other "bad for you" foods. Ensure and Boost are commonly suggested for gaining weight, but I won't go there myself. I've tried Orgain and other natural and additive free supplemental foods and appreciated this blog post by a food writer who's since died of metastatic cancer.
Food or Vile Glop?
https://storiesbycarrol.wordpress.com/2015/09/01/food-or-vile-glop/
I suggest such simple things as reducing food odors from cooking (unless they smell good to her); having easy to eat foods available when the mood to eat strikes; serving on small (tiny) plates and bowls; frequent small bites of nutrititious foods, adding nutrient dense foods to the menu.
Mom, I removed the link to Rebecca Katz's recipes, since many would lead to weight loss, not weight gain.
Her cancer cookbooks are excellent! Dollops of yum, tricks for tasty foods, focus on translating "unhealthy choices" into healthier ones and much more can be gained by reading them.
Here are links that tell more about the books.
http://www.rebeccakatz.com/one-bite-at-a-time/
http://www.rebeccakatz.com/the-cancer-fighting-kitchen
Sending warmest healing wishes, Mom, Stephanie
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Hi Gramen,
I'm so sorry that you're being treated as an object of pity and pariah at your cancer support group. Where's the support in that?!
Unfortunately, we with metastatic cancer are the "bad news" to those with earlier stage cancer, but you'd think the facilitator would do better at creating a safe, inclusive group for all.
Of course, that means allowing the possibility of recurrence and "failure" into the group. And many can't handle that as they're struggling to get through treatment to the other end.
I've developed a calm, reassuring, humorous attitude to put others at ease with my "plight".
Funny how it is that the work is on me, but that's how the cancer culture works.
Now that I'm on hospice, I've upped that attitude - hoping to put metastatic folks at ease around dying and death.
Some of it is self protection - I don't like having pity and pariah projected on me (alliteration attack, sorry!).
But I tell you, at the end of the day, I'm happy to come to this forum to meet with others facing similar situations. And D&D is my neighborhood, even if we've very few residents.
Wishing healing for all - physical, emotional, interpersonal, psychic and spiritual healing. Sometimes the body gets remission, yet I believe the spirit can be healed, even as the body wastes away.
Just saying', Stephanie
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Stephanie you always so eloquent. And you truly nailed it. I am navigating, and do it what I Have to do, I just joke with the girls that if i just explode and "become a situation" they should be kind to me and send me to "a good place". A running joke around here. I think you would all do the same. I am telling you, she is so cute, she got speakers put in her home, she was skyping with me and her little ones, and they were rocking, I took video of it (of course!), she's got spunk. I'll tell you. She talks very openly with the sis, BUT nothing about THAT. She asks them to read a book before she reads it, bcs she says everyone is always sick with cancer and dying, she does not want any of it.
I'll reread soon everything and comment.
But I do wanna ask Gatorgal about Megace, it could make one blow up also? I know my mom needed it at the end,but it did not help her, bcs she was so sick. You think I should request it? What do you guys know about Megace? Thanks so much
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Gramen, your experience at the support group is messed up and wrong!
And why is your employer asking about your status?! That is so wrong. Do you work for a really small company, where one employee's medical condition impacts rates?
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JFL,
I have no clue if my condition will affect the company rates :-/ very small company, 23 or 25 employees at most. I tried to search online while they were questioning me yesterday and somewhere I saw something about the risk of not having some expenses covered if I don't disclose my condition so went ahead and told the insurance broker.
He said he was prescreening medical issues, that anything I told him would be confidential and only shared with the insurance underwriters without identifying me.
Sigh. I welcome any guidance/info you can provide. Before starting treatment I consulted an HR lawyer that help me with the request for accommodations so I can take off one afternoon a week to get treatment/go to appts and make up the the time on Sundays. No FMLA since less than 50 employees.
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Gramen, don't let it bother you. He will not be able to share the information you provided or he would be in violation of HIPAA regulations. The laws are in place to protect you, your job, and your privacy. I am sure you will be okay there. The bad thing about what happened is that it made you uncomfortable, and none of us want that to happen to you. Today is a new day. Just concentrate on getting stronger and enjoying your life. There are so many things in this world that are just noise that we should ignore. If we spend time worrying about what "might" happen, we sometimes miss the joy and beauty right in front of us. Relax and enjoy your weekend.
Lynne
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Mom,
My oncologist had prescribed megace a few years ago when I had no appetite. This time I asked him for it because I was losing so much weight. My port was starting to poke through my skin and had the chemo nurses worried. I take one pill twice a day. It has really helped me. I also remember reading where someone on one of the threads was given megace as a cancer fighting drug. I was planning to research that but never got around to it, it has helped my appetite a lot and I have gained about 12 pounds or so in the last month to 6 weeks. I feel a lot better. I'm also on arimidex now so feel I will put on some pounds because of that, I wish you could get Dani to drink the ensure. I was so afraid about the weight loss and looked so gaunt I thought I would waste away. Now I tend to grab an ensure when I head out in the morning and really like it, I'll see what I can find out about megace,
Support groups can be really good but I'm thinking separate groups for those with mets. Earlier stages freak out if they are reminded this could happen to them!
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I can't believe it has been a month since I posted here. I need to not be away so long again.
Stephanie, your "attitude" and desire to put stage iv people more at ease about dying and death is certainly benefiting me. I feel like I am storing up wisdom for the future, and am a bit less fearful in the present.
Gramen, I'm sorry for your experience in the "support" group. Don't even get me started. Ok, I'm already started. I have been to support groups as a person with stage 1, and as a person with stage iv/mets. I have to say I really believe we need a separate group for stage iv/metastatic. In a mixed group, I know I am their worst nightmare come true, and feel I can't share freely. And while I can understand the early stagers and help them because I have been where they are, they are not able to understand and help me very much, even if they are caring people. We have different issues. The early-stage people are mostly just trying to get through treatment, whereas we are living with cancer. I used to go to a stage iv group at a place with lots of support groups, and when the person in charge split up our group and mixed the stages, I tried to get her to see how different our needs were. Brick wall. I ended up leaving and it was a real loss to me. I went there for support and ended up with more trauma. Thank goodness I was able to join the BCO discussion boards.
Momallthetime, I'm sorry things are so hard, and I'm hoping you and Dani and your whole family can find the right things and people to help you.
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Don't really have time to respond now, but I've taken Megace in the past
Here's a bco topic/thread about Megace - my experience included:
https://community.breastcancer.org/forum/8/topics/...
warmest healing wishes, Stephanie
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Just finished reading up since being on vacation in southern Utah for the past week and a half. It was wonderful and I only thought of cancer a few moments throughout, not even every day! Sad to be back and facing reality but also so glad for the opportunity to go, bond with family and enjoy some astoundingly beautiful parts of the US, new to my eyes and soul.
Cjanet, I am so sorry to not be able to immediately respond with my good story about gem/carbo. I've been on it for over a year and while I've had some reductions, delays, had to add first Neulasta, then Neupogen for white counts and eventually dropped the gemzar altogether, it's a tx I am head over heals in love with. The extent of my liver mets had me wondering how many months I might live, not years but I saw sizable and immediate reduction (9-10 cm tumors now to roughly 2-4 cm). Now holding stable. My onc has a current patient (also TNBC) who has been on it for 3 years and counting. Hoping to follow in her footsteps though recent platelet issues do have me wondering. Platelets are why we dropped gemzar recently. So far so good, even with now having developed an allergic reaction to carboplatin. Tues is chemo again and hoping for the best. Please feel free to contact me with any questions. Gem/carbo is the one thing I know my way around pretty well.
Artist, I'll be thinking of you as you get your scan results Tuesday and as you start back to school. Sigh...so hard to say so long to summer. Thursday is my day back, though technically Friday is an unpaid room set-up day.
Yay to Gramen for stable scans!!! And to Gatorgirl for being stable 8 years. Lynne, sorry to hear about your new liver mets but so glad to have you here. This is such a great group of ladies. Momallthetime, I'm thinking of you and Dani as you find answers to the weight loss issue. Nothing more to offer there but seems you've gotten good advice.
Shetland, good to hear from you again! Stephanie, I'm never quite sure what to say in response to your posts but always feel there is something to be said. Shetland's put it perfectly. Thanks for the words, Shetland. I echo.
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hi ladies. I haven't been here in awhile. I see some interesting topics. I am looking a low stress job and bring that I have one or two treatments left I wonder when to tell a potential employer that I can't work on this Fri or that Fri and the day or two after. Do I wait until I'm offered a job? Second I see since weight issues in discussion. I was about 132# when dx, now am floating between 114 and 120. Doc not concerned days chemo will change metabolism. I'm down with that, I was able tto get a cute bikini this year and am in asize 7 jr. Tummy is flat. Crappy way to lose weight but might as well enjoy it. My bf situation stabilized and am still sweating it out in AZ. Markers have gone from 49.5 to 23 now at 17 after 2 treatments. We r now thinking maintenance drug. Hoping it is one that will not keep hair from coming back. Wishing u all well!! Hugs...
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LvinAZ,
What a great report! Sending you good vibes all the way to AZ and wishing things keep getting better.
I have no good advice for what to say to potential employers but suggest calling the living beyond breast cancer hotline (lbbc.org). I've called a few places and they had the most knowledgeable, helpful and caring volunteers.
I know what you mean by melting, I graduated from ASU, hang in there, in a couple months your awesome "winter" will be there.
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gramen, I live in a small town and they do not have a support group for Stage IV only which is why i have never been. I would love to meet a few women in my town who are going through what I am. But will not go exactly for that reason. I feel i will scare and bring down the group. Plus all the super pity looks and back rubbing....NO THANKS!
I was surprised too, to hear that they can ask you details about your cancer. i did not think that was allowed. Since they passed the pre-existing medical conditions clause I am not sure what difference it could make?kaayborg, I am so glad you had a great vacation and were able to not think about your health for awhile. It is soooooo wonderful to be able to shake off that mental burden for even short periods of time. yes, I HATE the end of summer. It went so fast this year as I mostly worked on our house to de-clutter and put it on the market. I am such a homebody, I love being home just tinkering around. Sometimes I contemplate applying for SSDI. But I think for now work keeps my mind engaged in a positive way and I would very much miss the human connections, especially the kids! Good luck with Tuesday as well! Hope the allergies are setting down.
Welcome back Lvin! Good reports there, Yea! That cracked me up about the weight loss comment. I was thinking like that the other day, as I have lost about 15 lbs since Dx and am rather enjoying how my clothes fit better, even for all the "wrong" reasons. The job thing can be awkward for sure. I have a new boss this year and my first meeting with her is Thursday. I have to break the news as well, that her Admin Asst is Stage IV and am a bit nervous....
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Glad you are back ShetlandPony, and great to hear from all of you inspiring women!
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Thanks, Mods!
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Shetland thank you so much. Not even normal to think they mix these two groups, absurd.
Gatorgal thx. It's really so confusing. She is very petite, 5ft, she used to be almost 5'2, but she lost a lot of bone, and she never weighed more than 100 at best, and 93-4 the last few yrs. So for her to gain 12lbs too soon could be much, that's another problem. Believe me I could totally understand about the lost of weight, with all the worries, lack of sleep I don't loose one pound. It's also due to her built so it's so obvious. That's the problem. Pizza guy asked if she was a kid….Going to MO this week, we'll see how much she weighs on Thursday.You are still on Navelbine and other stuff, or just the last one you posted?
Stephanie you are such a fountain of help, thanks sweetie. I checked that thread, but it's very confusing.
Now that we are allowed access to Portals, docs office wants us to check results at the Portal. But it takes, 4 days to get the info. They have no sensitivity. I will have to be a pain in the butt, and try to get the info. Also, I am very anxious about the ALT/AST and Alk Phosph. I don't wanna wait till next Tuesday if she is takg the blood test on this Thursday. I hope they cooperate.
Kaayabor wow so nice you had some down time. With the kids?
All of you ladies are soo wonderful, and thank you so much for being so supportive. I have been extremely anxious with this status now, also with the lesions in the skull. I spoke to an outside RO and he said we should ask for Radioembolization. I will try, but they seem so adamant in doing less. I cannot even get them to do a biopsy. And I know, ONCO does not make decisions on her own, she has group meetings. I do wish they would be more aggressive. I think.
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Mom, they should be able to get AST/ALT and Alk/Phos pretty much the same day....
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mom, I'm only on arimidex now. Tried to update my profile but it didn't work. No chemo for a while. Had a 3" tumor on my iliac bone radiated and will scan sept. 1 to check that status. Feeling good right now being only on arimidex. Would love to be able to stay on hormonals for a while. Side effect: weight gain!
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hi all! Had the liver bx and it really was pretty simple. Didn't hurt at all and wasn't even sore the next day. Had chemo 3 days after. Got my pathology report and my receptor status hasn't changed. Still ER/PR +, her2-. MO and I thought for sure receptor status had changed given how badly Ibrance failed. So will continue with gemzar/carbo every other week until next scan in Oct. Getting chemo tomorrow and have a bachelorette party this weekend. I'm probably just hang with the girls Saturday afternoon at Zephyr Cove. Other than that not much else is going on. oh, I got my welcome to Medicare packet so I'm researching best option... Medicare advantage vs. A medigap policy.
Thank you for the well wishes and advice!
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Thx Artist, I will try to ask. They don't care much to make me happy. I saw that already.
Gatorgal got it, thx
Shelbym i may have missed if ou posted earlier, how many lesions do you have? A lot, few? Did they talk about radiating at all? And glad you over the biopsy. Onco refuses so far to biopsy. Why oh why. To us, they say it's bcs it would not change the treatment.
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