How are people with liver mets doing?
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Good grief! Someone needs to invent a better way to reply to these posts cuz I read through and want to say things and by the time I get to the bottom chemo brain takes over.
Shetland! I am so excited for your dance opportunity. This made me so happy to read. I enjoyed the ballet. Part of it made me quite angry watching that crazy cancer dance around on stage. Out of control! Stupid cancer!
Isy, I am so sorry to hear about your bone mets and just so you know, I'd choose the same as my next treatment just for the hair! It shouldn't matter...it shouldn't matter, but it is a huge blessing. I am so glad to have hair again even though I must confess I do still sometimes hate this short do compared to my long pony-tail locks. I look horrible on a day at the pool (indoor swim party for my daughter today).
Gramen, good luck with your port. You will like it. Makes everything easy. Awhile ago I was having some kind of crisis about finding a bathing suit to cover mine as it protrudes so much on scrawny me. Here's an update for everyone. Tried on too many bathing suits, wasted too much life shopping. Told my 12 year old daughter she was to smack if I took another suit to a dressing room. Showed the world my port today and it didn't matter a lick to me or anybody. Yay, me!
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LOL! Me too kaayborg, I forget all the comments by the time I am ready to reply. Then when I try to go back and forth it gets erased! Anyway, I gotta say, even though I don't know you, you look pretty dang cute with that short haircut....Wish I could wear my hair like that but my ears stick out like a mouse. Also, good going on letting the port just hang out! Yes, Isy I too would be very interested in targeted therapy for Her-.
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Count me in..... Can't keep much straight. I put orange juice in my cereal bowl this morning, after shaking it up & looking at it. Next time I will need to take notes, being at the top of the page.
Kaayborg, I enjoyed the video. That modern, contemporary ballet is my favorite.
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Hi ladies, I know I keep repeating this, but so thankful to be able to communicate with persons fighting this disease....
Not much to report on treatment since scheduled to start in 1 more week...but wanted about sharing diagnosis with family / work...I told my immediate family mother/siblings and my partner and my best friend. My partner told his parents/siblings and they haven't reached out to me ...I guess is hard and they don't know what to say, I do see they call and text to check on HIM..
Work, based on experience from initial dx in 2014, I don't feel like sharing the details this time, so told my boss that I have a weekly apt and asked if I could work Saturday or Sunday to make up. Or worst case if I can work 32 hours....mentioned that down the road I could handle my apt during weekend ( praying I respond to chemo and one day I can get herceptin/perjeta and looks like that could be done during the weekend at my cancer center)...he asked if it was personal or medical and I said personal...and he said he would get back to me in a week.....
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Holeinone-thanks for a really good laugh about the orange juice. I have almost done that a good many times. The worse for me of late was running around the entire house in a panic, late for work looking for the cap to my water bottle, which I had already put on my water bottle. When I finally saw this, I thought for sure my hubby had played a trick on me. He hadn't. I cried on the way to work at my sorry state!
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woody. Yes that is the new med. He is not sure if it's new spots or dead cells, he didn't see them on the last two scans. He did not say progression so hoping it's just dead cells. He also says this new med did not cause hair loss. Try the new med and then scan in a couple months. Ugh....
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Livn, if t was a PET scan you would have known if it was progression or dead cell because it would have shown if the spots were active or not. I would hate to think that ge made you chane from a med which may be still working for you. But i am not a doctor, i hope it is the right choice for you and wish you a good response on it. Not losing you hair is an appealing idea loll. Good luck and of course waitng for your updates.
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Lolllll Kaayborg you are not the only one trying to keep up with all posts , i forget most of them by the time i am at the end of the page and i have to go back so many times that it gets ridiculous.
As for the chemo brain ohhhhh! Ladies i am way ahead of you , last week i cut up the onion threw it in the garbage then kept looking round and round in the kitchen for it ughhhh!
Kaayborg , you look great and very trendy with short hair , i love it.
For all the ladies i forget to post responses forgive me , i will try to focus more.
Sending love and kindness to all !
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Isy, i am sorry honey for the progression to bones. Xelda s a good choice , of course there is the hand and foot syndrom . It will not show right away it is cumulative. Just keep your hands and feet well hydrated avoid too cold and too hot. A lot of ladies were on Xeloda for a longtime , i hope you will be part of this group.
Wishing excellent results on the new med and much healing lights. Hugs.
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Doc wants to take me off Xeloda for now and try Tamoxifen. I've never been on it. He thinks because I'm fairly stable now, it would be a good time to try. So, I think I'll make the switch this week and give my hands and feet a needed break. If I can stay on Tamox May, June and July at least, I'll be feeling pretty good for our trip to Quebec this summer. It would be great to be able to walk around the city, pain free.
My onc is a fan of hormonal and targeted treatments. Will do chemo if necessary, but thinks often hormonal give a longer progression free response. Worked for me with Faslodex, but not so much with Femara/Ibrance.
We'll see. Hope my liver approves.
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I wonder now if hes jumping the gun changing meds but I will ask about a pet scan. I was hoping there would not be anything new while I was on chemo. I am heading back to my dark place, thinking of selling and getting rid of stuff. I have pain in upper stomach, it feels hard and I get full so quick. Anyone have this type of pain.
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Lvin, the pain you are describing, upper stomach, fullness, is what I am dealing with. My liver is still very swollen, my MO says it's not as "congested" as it was. My liver felt like ribs. My MO also told me to quit pushing on it.
I hope I am not freakin you out even more. Did you feel like this when you were dx? You are getting chemo now? I am on Taxatere, will have my 3rd dose in a week, and then they will CAT scan 3 weeks later. My #s have dropped, so I am trying very hard to stay positive. When do you see your MO again?
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well my liver shrunk, this ache started a mo the ago Dr says he didn't know what it could be from, maybe chemo. I need to stop pushing on it too. Start new treatment Fri might see doc then. I am going to ask why he chose the new med that he did instead of the others I read about.
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just got off phone with Dr office. Now he says pain from progression!;? Omg I'm freaking out. He never said progression last week. I feel like I'm going to be dead before the end of the year. I want to go curl up and cry. Wth!? Progression while on chemo? Ugh. Thought that was killing cells. I'm freaking out!!!!!
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livin- hugs. That news is always startling and stirs up the worst fears. Hang in there as there are still Meds to try. You and your team are on top of this. I hope new Meds on Friday beat back this monster.
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Lvin...I'm so sorry you got that news...and on the phone...ugh. Sounds like he didn't have the full report earlier, which was why progression wasn't mentioned. Arms wrapped around you. You said you're starting a new drug (can't remember which), Yahoo!! Sounds silly to cheer but hoping this will be the one that kicks those crappy cells to the curb!! Thank God there are other options! It's such a scary ride, but once the right meds start working & tumors start shrinking...there will be a moment to breathe!!! Holeinone...I also felt my liver all the time...I'd lay down on the the bed & rub & rub, trying to analyze it all. Stable for 2 years & I still do it. Taxotere is good ..it & if numbers are sliding down, yippee!!! As they say...stay in the moment!!!
I feel so out of the loop...besides not being able to keep up with the speed of this topic, I have the same "can't keep anything straight" thing going on in my head...if anyone knows where my Target card is, please let me know :-(
Gramen...I'm sorry I may have worried you, I was thinking you weren't starting treatment for a while longer. I have such hope that Navel/perj/herceptin will work well for you! SUE and I are big fans. Hair thins a bit & white count can tank (thank you, neulasta), but it worked very well on my liver tumors & SUE's lungs.
Sandilee...excited that you get some time off from xeloda! My onc took me off chemo after 22 mos & then perjeta at 30 mos, now just on herceptin/femara. I felt good so quickly...quite remarkable how (good) cells regenerate. Hoping Tamoxifen does a great job keeping you stable & your vacation is amazing!!! Plus...you can keep xeloda on the shelf :-).
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Livn,
I am starting to doubt your doctor's methods of coveying news to you. Yes prigression could make you feel fuller quicker and it could give some pain also. But pain sometimes cones from chemo also when it is killing the cells but only for few days after administration.
But do not freak out or think about death, carbo/gemzar shrunk my tumors only by 20% after six months. Then i was on aromasin for three months and i progressed like crazy my liver mets doubled more than 15 and i had spots all over the bones. Six mnths later all disappered.
So please do not freak out , you need to think clearly and make sure your MO Is taking all measures to insure you are getting the best treatment. There are still options and good ones. Just don't go to that dark place again and think it is all over. It is not, one of these meds will work for you. Ask for a CT/PET scan as a basline before starting your new treatment. Hugs.
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Sandilee,
Tamoxifen may be a good option during your break. I failed femara and aromasin. Now i have been on tamoxifen since one year with herceptin/ perjeta. It seems to be holding the ER+ side of my cancer.
I hope it will do the same for you.
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RonnieKay,
Thanks for the encouragement! I'm very hopeful about treatment specially after reading this blog.
You didn't scare me:-) Scary was one of the MOs I saw last month, she gave me a pat on the shoulder, said treatment would work about 6 months and I had 2 years. My neighbor almost fainted, and I asked her to go with me because she's a though lady that has dealt with colon and breast cancer.
Today did preregistration at the hospital to get port back. As I gave my info to the anesthesiologist, she was having a hard time with each answer...birthday: 1979, smoker: never; alcohol: nope, and so on...at the end she said: life is no fair. I just smiled and thought to myself, fair or not, this is my life.
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Livin - I echo Woodylb in that it seems you are going to really have to ask your doctor some clarifying questions. It does not sound like he was very clear with you. Also, Woodylb is a great testament to the ups and downs on landing the right treatment. You'll find it!
Gramen - I find it interesting and appalling what some ladies are told at dx. You simply cannot tell someone how long they have. I am a person who appreciates knowing average survival estimates, (even though they're old data), and then I go on planning to be above average b/c there is certainly nothing standing in the way of that being completely possible! My doctor seems to live on the sunny side, which I appreciate. I ask her if my massive and extensive mets could disappear. She says, "I've seen it before." I ask her how long I might expect to stay on my current effective treatment, she tells me of another patient who is on her 30th cycle. I'll take the sunshine and we'll deal with clouds when we must. There is plenty proof in these forums that 2 years is not the max.
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Kaayborg
Thanks for your words. I'm hoping I'll learn to get over these things and focus on the present...is just a process :-) BTW I didn't see that Dr again
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Gramem, i am happy you are not seeing this doctor again, we are all here all living proof that the date is oudated.
I d not want t intrude but can you fill in the information on your profile , so we can know what kind of cancer we are dealing with and so on? It would be helpful .
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I love, "We're all living proof the date is outdated!" Woody, my friend, I'm quoting you!!! Kaayborg...in 2 days, I'm 35 months past my 5 month expiration date :-). And dang it...this year I'm going to find a swimsuit I like that doesn't have to hide my lifeline!!! Thanks for the gutsy move..I may be a matronly age, but the suit I found that covered my port last year makes me LOOK matronly...yuck! Gramen...you share my youngest daughter's birth year...too many women on this road...but WAY too many young women. I hope your port landing goes very smoothly!!! Talking about people we encounter on this road...I have my favorite Echo technician...A) he's a muscular, athletic, gorgeous, black man (married to a blonde woman...my blonde daughter's married to a black man so we compare kid/grandkid pix).
he always gives me my echo #, cause he doesn't want me to have to wait (with the caveat that when I get the onc call, I'm surprised!) C) he says he knows that he's most at risk for certain diseases, but is most scared of cancer. He scans for many different reasons, but he says C doesn't discriminate...healthy, conscientious living doesn't mean you're exempt, and that the courageous people who see him humble him. He was so real...I put my arm around him as we walked out of the room and thanked him for being honest. So many times, as you say Gramen, people have a hard time grasping what we go through, it was refreshing to hear his thoughts. SO..I try to ask for him each time...it's kind of a crap shoot, but it's worked 3 times...hope I see him Friday!0 -
Sending you all a big cybernetic hug, and wishing this week treats us gently :-)
Your words and the information you share mean so much... I'm going to try my best to stay hopeful !!!!
PS working on the timeline, need to move treatment under first diagnosis, will get it right soon
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Dear LvinAZ44,
Thank you for reaching out to us for support, reassurance, advice and stories.
You wrote," just got off phone with Dr office. Now he says pain from progression!;? Omg I'm freaking out. He never said progression last week. I feel like I'm going to be dead before the end of the year. I want to go curl up and cry. Wth!? Progression while on chemo? Ugh. Thought that was killing cells. I'm freaking out!!!!!"
Others here have done a fantastic job of offering reassurance, advice and personal examples of beating the odds.
I want you to know that I heard your freak out and anger that you had progression while on chemo. And that your doctor said one thing at your visit and another on the phone.
It is totally scary to feel your body change and worry about progression, then to get news that it's true!
Lvin, it's really important not to mentally go to the "worst case" or "best case" scenario, because none of us, including you, have any idea how this is really going to unfold.
My wish for you is that you reach out and find supports to hold onto - our virtual hands, our stories, a more in-tune and communicative doctor, hope for an effective treatment, a mind-body or spiritual practice, and maybe some anti-anxiety medication.
This is really hard news to get, especially the way it was delivered. Of course, there will be freak-out. And it's good to sometimes step back from the panic and see that none of us know the future. And that those feelings will change too...if you keep reaching out.
Sending much loving kindness, Lvin,
Stephanie
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thank you all again for your continued kind and supportive words. I had my dr call me and we talked about treatments like gemzar and others. He said some were harsh and that doesn't necessarily mean better and since abraxane was starting to get to me he decided on ebrium. Not sure if that's how to spell it. After 2 spins we should know better what's going on. Hoping TM comes down. I'm just having such a hard time keeping going. He really is a good Dr and I like him. After I freaked out and said I'll be dead by the end of the year and was going to can out my 401k he talked me down and said that something will work we just need to find it. My disability starts in June, after that I'm going to find a PT job and chill, join a gym and hey it more to see this beautiful state I moved to. I find myself ashtrays trying to bargain or ask why me. Does God hate me? I am going to try alternatives and have been taking tumeric and will start either Rick Simpson oil or a cannabinoid this weekend. I'm willing to try anything. Best to you all and thanks again. I hope I will be here in two years giving someone else support.
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Lvin....you're so lucky to live in a sunny spot. My body loves the warmth of southern CA, where my son's fam lives...we may someday go back & forth, kids/grandies here & there. If you're starting a new tx, it may be best to take some time to let it start working, get a handle on ses, before adding many "alternative" therapies, that also can carry ses. I wish you much success on the next tx...and my suggestion....sunshine & walks...clears my crazy thoughts!!! (you really aren't searching for ashtrays, right....LOL!!!! Did spellcheck do its own thing??? Made me laugh!).
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ha. Ashtrays.. No that was supposed to be always. Yes I will wait a treatment or two, though I have already started tumeric. I just want to feel good again. Might try budwig also but not sure about the flax. The sun is nice now but in another month we hibernate from it. That's when my small gambling problem kuvks in, haha.
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Livin-When I was first dx with MBC my MO at that time told me that my life span with MBC was about 2 years. I'm at 18 months now and hope to be here much longer. My first 2 MBC txts failed and I also went to that dark place. But, I'm lucky to have a very upbeat MO now who kept telling me we would find a txt that would work-and we have. I hope it works for a long time!!! So stay the course so you can find the txt that works for you!!
Babs
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LOL! RonnieKay, you crack me up! I had a quizzical moment reading ashtrays too....And I am so ready for a warmer environment. Summers are glorious here but then the winter closes in. Although I love to watch it snow and see the Christmas lights in it, I am too sensitive to the freezing cold anymore. Gramen and Livin, Woody is right, plenty of women are living proof that those are just stats. I think Gramen as you continued to peruse the threads on here you will see that many women go through a lot of treatment and are still living very joyful, productive, fairly NORMAL lives. All of us have our down moments for sure, and I have certainly asked the "why me" questions. But there is no good answer and agonizing over it is pointless. To me, it feels a whole lot better to live in the moment knowing I am OK right now, today and looking forward to something. I think Ronnie has some good advice to let the Tx settle before you start considering alternative stuff. Doesn't flax have soy which you might want to avoid?
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