How are people with liver mets doing?
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PP: JFL has a good point about Xeloda. I only mentioned I failed - but I had a good stint on it and a couple of good scans. The side effects can be pesky - aren't they all! - but some people manage well for quite a while and with few side effects.
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Hi All
Well I met with the brain oncologist/ radiologist on Tuesday. They’re doing 10 whole brain radiation treatments and at the same time they’ll be doing spinal rads. Afterwards I go back on chemo. I think it will be back to Halaven which I tolerate ok. Will lose what Hair I have and will prob have some short term memory loss. The dr was very optimistic about the brain rads. She claims they have great success when the Mets are extensive but small. I pray she’s right. I’m still working FT. I had the “talk” with my boss. He’s willing to accommodate me in any way he can. He only wants me as his office manager. He made me cry he’s just the best! My Dd and Anton are still staying with me until 9:17 and I’m making Rosh Hashanah. My DD wanted to do the holiday as did my brother but as long as I can i want to keep things as they’ve always been done. I’m crazy. Of course I’ve made adjustments- bringing in all sides which I usually make. Oh well As long as we’re all together! I’m having some major difficulties. I have trouble walking ( I must hold on to something) and cant stand for more than 2-3 minutes. I’m still coughing due to the lung mets and sometimes have difficulty talking. I have shortness of breath from walking just a few feet. I can’t pick up my grandson. I walk like a drunk and easily get very tipsy. I feel old and worn out all the time. It’s really rough. My hemmoroids are ablaze and out and I’m soooo constipated it’s ridiculous. I’m getting terrible leg and hand cramps. I hate to complain and don’t to anyone at home or at work but with my bc sisters I can be real. I’m really not so sure how much more I can push myself. I’m hoping I stay around until my DD has baby #2. ( I think they’re trying but I haven’t been told for sure). I start rads on Wednesday Just hope they work!
Thinking of you all all the time and praying for us all
Babs
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lots of love Babs. Your inner strength is amazing. Brain rads arecamazing things and do zap those tiny suckers really well. You will be tired but I am sure you already are. The brain mets thread has a lot ifbinfitnsyion. There is a drug you can take thatbis supposed to help with short term Mom memory loss. I can’t remember the name but I’m sure the brain mets thread w I’ll have have it.
I am right there with you in terms of hemroids. I carry ticks pads with me now.
Know we are with you in spirit.
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oh Babs...I'm so sorry to read about your current struggles and so admire your indomitable spirit that allows you to carry on and still take care of your family in spite of the challenge ahead
You're amazing! I hope you get the help and support you will need as well when undergoing TX.
May God give you strength and clarity, and guide the mind and hearts of the doctors that wil be treating you.
Happy Rosh Hashannah!
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Babs, hate the news of your progression but hoping and praying the rads help a lot! Will be praying for you!
Happy Rosh Hashanah
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Babs, an early L'shanah Tovah to you and yours! My rabbi holds free HH services every year and last year held them in spite of being flooded out of her apt by Harvey (we are in Houston) and being crammed into an upstairs apt with several others and dogs. Shortly thereafter, she suffered a recurrence of her breast cancer that landed her in the hospital and rehab for most of this year. She is - to my amazement - holding HH services in spite of (or perhaps because of) these travails. I should have known she would, as her favorite Torah passage is "I have put before you life and death, blessing and curse — therefore choose life!" L'chaim. I'll be thinking of you (and your moxie!) and praying for you during the holidays.
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babs: praying for you. I pray the rads are successful and relieve you of your cancer and symptoms. Hugs and prayers coming your way daily
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Hi
JFL- my liver is the same condition as your but I have mets to medisteinum and lungs and one bone T11. Not real worried abou that bone yet. I am switch dr.s and am going to ask for Xeloda but have you had it with Taxol? I need a few more taxol treatments to keep my cough at bay and lungs clear.
Anyone else have experience with this combination. My WBC is now normal 5.7 and ANC leucocytes are 3. what a relieve. I was so frightenend and vulnerable for a whole weel giving myself shots....5x in a row.
Raven
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Babs-I'm so sorry about your news. It sounds like you have a great medical team though. Big hugs! I'm praying for you. I love that pic of you and your family. Just beautiful.
Grannax-I'm so sorry to here of your progession. Hugs and prayers to you!
Princess-There are many options out there. I am 6 years since being rediagnosed at stage 4, and have just started my 7th treatment. Half worked 6 months or less, the other half worked 1-2 1/2 years. I thought I was going to be gone long ago. I asked my oncologist the average lifespan, when I was first diagnosed. She told me 2 years for just bone mets, if organs were involved (as my lungs were, and now my liver too) was 1 1/2. In the next breath she told me she had 2 women 10 years out and one was still working. I recently asked if those 2 women were still around. She said one was, she is now at 16 yrs and she had another one at 14 yrs. I plan to last at least that long if not longer. I'm living with cancer not dying from it. Hugs!
JFL-Please tell us about your river cruise trip! We need some upbeat news!
Lynne
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JFL - you mentioned that your liver mets got worse when ibrance failed. I feel like I read somewhere recently that there seem to be a number of people with liver mets after ibrance? My memory was jogged on that recently because someone mentioned to me that perhaps I had liver mets show up because of something I had taken. Interestingly, I was strongly ER+ (stage 3), so I was on ibrance/faslodex/lupron after my initial ACT chemo, mastectomy, and radiation. July 2017 PET/CT was clear. Ibrance/Faslodex/Lupron combo starting in Sept '17. January '18 showed two TNBC liver mets. Anyway, curious what you have heard/know about ibrance and liver mets.
Sending love and prayers to all on here. Some people are going through rough times, but I love how positive people are and how much this group picks each other up.
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Babs-I am holding you in my thoughts. May the force be with you. Mary Jane
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I don't have much of an update, sadly, despite a 2 1/2 hour oncology visit. At least, nothing with any forward motion. We're still waiting for part of the cytology report from my thoracentisis.
The first major thing we did learn is just how insane my liver enzyme numbers are. My AST is either 438 or 483, and my ALT is in the 260s. Apparently, that's at least 3x what they should be. He showed us the PET of the liver, and it was like a little sun in my stomach. Terrifying.
The other major thing we learned from the cytology is that the cancer is now ER/PR- when it's always been positive. We're waiting to find out about the HER2 marker. But that would in part explain why the Afinitor/Faslodex did nothing, since that's for hormone positive.
He wants me to go on a 2-drug protocol to get the liver enzymes under control, and if we get that down then there are a couple different studies I might be able to get into.
I'm not sure I like this doctor. He never even looked at me when he was talking. He directed it all at my husband... But my DH's feeling was that it was from discomfort, like he was trying to not panic us with how bad things really are.
We'll find out the rest of the news on Monday or Tuesday, I suppose, and he knows we have another appointment on Friday with yet another oncologist for a third opinion, and we might be calling UPenn for another opinion, since they have different studies available than Fox Chase or LVHN/Sloane-Kettering.
I'm not sad, or panicking, or despairing, or... anything, really. I'm just numb. I'll get excited with hope once someone tells me that they might be able to do something to extend my life. In the meantime, I'm just trying to be normal, keep up with the routine, stay busy and focused on things that make me happy.
Thanks for all the prayers and support, ladies.
PP
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PP - Sorry to hear that you didn't feel like you learned much from such a long appointment, and that you are disappointed with the doctor. I did want to share with you that I was ER+ (99%) with my primary. I was on ibrance when I was diagnosed with liver mets, which turned out to be triple negative. I started GemCarbo in February and they can no longer be seen on PET/CT. I share this with you, hoping that it brings you some hope for your new diagnosis and treatment plan. Hopefully your care team can figure out a good plan for you and that the drugs will shrink those mets!
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I, too, ended up with crazy progression on Ibance/Faslodex. I started in May 2017 with two bone lesions, one at T9 and one in my tibia (which I had learned had both been there at least 6 months prior but Onc had lost my bone scans from the previous fall). I started I/F in May, 2017 and by August had a liver met and I had an explosion of bone mets. My entire tibia was full of cancer in just 3 months. Xeloda knocked out the liver met but the bone mets march on at an amazing rate. Now on taxol and hoping it works. Afinitor/Aromasin was a total failure.
I wonder why some of us have such huge progression on Ibrance?
Babs I'm holding you in prayer.
Thought you all might find this article interesting about ablation:
https://amp.theguardian.com/science/2018/aug/06/ab...
Mary
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Marylark. Encouraging article. I'll find out Wednesday if this procedure is an option for me..Thanks
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Hello liver metsters,
My feeling is that Ibrance has nothing to do with progression in the liver. I think it probably would occur eventually anyway as the cancer finds it's way around the hormonal treatments. I had a few liver mets at the initial MBC Dx that were stable on Ibrance for over a year before progressing.
Good news for me yesterday as my post Y90 MRI revealed that mets in left and right lobes have been shut down. Since the Y90 was in right lobe, indications are that the Xeloda has been effective in the left lobe. Pretty happy about all of this, but know that the shoe will drop at some point. Until then, I will continue to ride like the wind.
You are all in my thoughts and my heart as we wade through the swamps of liver mets land.
Mary Jane
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MJH. I will get the results of my liver MRI on Wednesday. This is the first MRI I've had on my liver. I've heard it's better than PET. My PET showed one new liver met, does MRI show more? Based on this info I R will tell me what local procedures I will be eligible for. Another y90, if it is in a spot not already treated. Microwave Ablation in another possibility.
I wish I was going to take xeloda instead of AA. I'm glad it's working for you. It may be my third line. Keep on flying.
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Hang in there fellow liver metsters. You all are in my thoughts and prayers as we waddle through this cancer journey trying to figure out what is best for each one of us. Keep on, keeping on....
Therese
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Celebrate_Life, thank you for the encouraging words.
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TEXTING CODE FOR THE BCO COMMUNITY....enjoy!
Teens have their texting codes (LOL, OMG, TTYL, etc.). Not to be outdone by these little SNK (snot nosed kids), now, finally we long-suffering seniors have our own texting codes! Although most of us are not even close to senior status I thought you should know their codes in case you get one from a senior.
Texting for Seniors as follows:
ATD - At the Doctor's
BFF - Best Friend's Funeral
BTW - Bring the Wheelchair
BYOT - Bring your own teeth
CBM - Covered by Medicare
CUATSC - See You at the Senior Center
DWI - Driving While Incontinent
FWBB - Friend with Beta Blockers
FWIW - Forgot Where I Was
FYI - Found Your Insulin
GGPBL - Gotta Go, Pacemaker Battery Low
GHA - Got Heartburn Again
IMHO - Is My Hearing-Aid On?
LMDO - Laughing My Dentures Out
LOL - Living on Lipitor
OMMR - On My Massage Recliner
ROFL..CGU - Rolling on the Floor Laughing...Can't get Up!
TOT - Texting on Toilet
TTYL - Talk to You Louder
WTP - Where are the Prunes
WWNO -Walker Wheels Need Oil
GGLKI - Gotta Go, Laxative Kicking In!!!!!
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Apparently I have developed Keytruda induced nephritis, an acute kidney injury. Apparently it is a drug induced autoimmune thing....so I guess I was responding to the immunotherapy! Keytruda and eribulin are being held and I'm on high dose steriods to reverse kidney damage. I think they caught it fairly early and am hopeful that things can be restarted while closely monitored, but looks like it would take up to 12 weeks for that to happen, if at all. Since I had such a good response from drugs I don't want to completely give up. I have an apt tomorrow to check labs.
Will cross post.
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I had good news today, my new RX for my second line TX, Afinitor was approved for me. And a foundation was able to pay my co pay, $750. I'm very thankful because I've heard of people who haven't been so fortunate. I won't start taking it until the end of September, probably.
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So i am on carbogem combo, but I have to skip alot because of my platelets/white blood counts. He felt my liver a week and a half ago and said it felt smaller and softer. I also had ascites-most of it is gone but the muscles on my sides are sore and feel like they are pulling. Plus my lower back hurts when I get up. I can walk okay. I also had two hospital stays for bleeding ulcers which I swear were caused by Doxil. Horrid drug. Anyway, I am scheduled to get chemo tomorrow if my counts are okay. I feel really good, and have been able to live again. I also had a tram flap years ago so my tummy does not have a lot of support. I guess I need some hope. My liver is scaring me. I don't even make plans to do anything unless it is the last minute. I am just babbling, but I am so nervous. Like everyone else-I want to live for my grandsons.
Lisa
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Grannax, that is great news and a harbinger of good results! My co-pay was going to be $3000 and my monthly scrip would be $750. I'm glad yours was covered!
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Grannax-I'm glad they found something for you! I pray it works and the side effects aren't too bad. Glad they are also covering your co-pay!
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Grannax- I am thinking that the MRI shows the LOCATION of the lesions more accurately and the PET shows the cumulative activity of all tumors in the body. Maybe that's an over simplification? Glad you are getting the results tomorrow, and also the financial assistance with the Afinitor. We just shouldn't have to worry about paying for the necessary treatments, period. I'll be in your pocket as you receive your results. i will see my IR on Thursday for the official results of Y90/MRI. I am still a little cautious as I am experiencing some very mild right upper quadrant pain.
Miaomix- the senior text codes are quite amusing!
KPW3- Ugh...nephritis sounds ugly, and I am sure it will resolve. Hope it simmers down rapidly and you can get back on the butt kicking chemos! Visualizing those antibodies attacking the nasty cancer cells!
lisajo6- being a liver metster is challenging. I just wish it wasn't such a cushy environment for the damn cancer. I feel like my liver is a ticking time bomb. Sorry to hear that the Doxil beat you up so much. I will be pulling for your counts to come up. Are you a candidate for Y90 procedure? Have you been on Xeloda?
Hang in there, all. Love to each, Mary Jane
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Not a candidate for Y 90. I did get chemo today. My oncologist felt my belly and liver and said he could barely feel it. He believes this combo is working for me. I hope so!
Lisa
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Has anyone heard from Zarovka since she posted a month ago? I guess she has essentially left the boards. I didn't see that coming, and I miss her. I hope she's okay.
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MJH Thanks for that explanation. Yes, today is the day. 6 PM appointment! I was super stressed yesterday but better today.
Looks like we will get to go on our trip in spite of the Hurricane since it turned today. That's good.
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I too am concerned and thinking about Zarovka. She is in my prayers.
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