How are people with liver mets doing?
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Graman, i am so sorry for your new dx , but like Leftfoot said , there are plenty of effective treatments to which you will respond. Specially that your mets are still her2+ . New targeted therapies are coming out every year and they are generally effective. I hope you soon start treatment and the results will put your mind at ease. I am sorry you joined our club of metsters but you are welcome.
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Artist isn't your scan today? If so good luck to you and happy findings.
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thanks Woody, you are a tonic - a liver tonic, ha ha. And ever the voice of reason. I do believe my body has had enough of this chemo, I'm tired and have a constantly grumbly belly.had scans today and Onc will decide tomorrow whether it's time for a rest or change chemo.
Graman, the worst thing that ever happened to me was being diagnosed stage 4. Once you get over that, and you will, nothing seems ever as bad again and you will be able to take it in your stride whatever the future holds. I just booked a ticket to go to family wedding in London in September. At the start I would have thought things like that impossible but you can and will carry on living well cos what's the alternative?
Kay, I love modern dance and was fascinated to see your vid about the cancer project. What an inspiring and amazing way to get the message across and yet it makes complete sense to express it through dance. Would love to see the complete project but don't suppose they'll come to Australia!
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Isy- I just booked a family trip to the Galapagos Islands for summer of 2017. Love that you are going to London in September. Have a great time. We are going to do a family track to Ireland in June to see where Nana came from. Cancer has given me perspective. lIfe is short so enjoy it while you can. My kids have been through a lot, but at least they are becoming world travelers. That is one bright spot that has come out of my whole cancer diagnosis.
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my wife had 6 cycles of carboplatin & Gemzar and had a PETCT after 3 cycles which showed Complete Metabolic Response .Her MO has put her on Femara since last 15 days .she doesn't experience any Major SE till now except Nausea and acidity which Comes up 3 to 4 hours after taking FemeraThe Mo has Rx Gelusil -4 times a day to counteract acidity. Can this Nausea be a late side effect of Chemo or could it be Femara or few other medicine she is taking or could it due to Liver ??? Plz share your experience and guide
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Welcome Gramen, Sorry you have to join this great group but hope you find a lot of encouragement here. Yes a puppy would be a glorious distraction! I've been rolling that one over in my mind....
HoleinOne, I still have my TM's done and they seem to go along with current scans. So Monday I will have them done again and hope they have not risen as they did last time. Even though my scans said stable I guess you never know what might be lurking. Only risen by 20 but still nerve wracking. 1/2 reduction is great!
Sonya, I feel like you do about putting something else in my liver, although some days I could REALLY use a little chemical help. Like Woody says, If they have something you could only take on days that you need it, that might be a great thing.
Sandilee, Nice to hear from you and I am so glad Tx is still working for you. May it continue for a VERY long tme.
Left, I am sorry to hear you are in such a quandary about the next step, but since you are still NED a break may be a really good thing. When I had to get off of anything for 6 weeks so my liver enzymes could correct, my scans still came out very good showing improvement. So maybe just the Xeloda will keep you going just fine and give your heart a chance to repair until the next move is figured out. Thanks for your ongoing encouragement regarding liver mets!
Babs, The liver enzyme thing is so scary but I am very happy to hear you and Woody say that they can self correct downward since I may be on this Tx someday and already had issues on Ibrance. It was another roller coaster inside the big roller coaster.
kaayborg, Yippee! I am doing a very happy dance for you too! Good news all the way around!
Isy, thinking of you today! Let us know how it goes.
Ronniekay, Always so good to hear from you and glad you are doing well! I am going to try and follow your lead and get back to more activity since Spring is here. (Although it snowed this morning.......LOL!)
Stephanie, I think of you everyday and treasure your kind words of wisdom.
Woody, Ditto to you. You always impart such a wealth of information and comfort.
Best wishes to all!
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Many, so glad for you and your wife that she had such a good response to chemo. It is hard to figure out what's what with all the drugs. I hope others here and/or the doctors and nurses can help with the nausea and acid reflux. Keep asking them for help.
Holeinone, great news on your TMs halving. Taxol did that for me, too. Each blood test they went down by about half until they were normal.
Hello, gramen, and welcome. I would be comfortable using the August scan as a baseline. My first on-treatment scan was three months after my baseline/diagnostic scan. But why so long a wait to start treatment? A puppy sounds like a great idea -- a wonderful, wiggly bundle of cuteness to cheer you up right now. Did you know there is a "Comfort Dogs" thread here on BCO?
Babs, good to hear your liver enzymes are ok now, but so sorry about the HFS.
Kaayborg, whew, very good that your brain MRI result was good.
Edit: Please forgive me for not going back more pages; I can't hold the information in my head long enough. My good wishes to Everyone here!
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Kaayborg, I loved the modern dance video you linked to. If I had a private jet I would so go to see that concert. It looks like fantastic choreography that shows true understanding and expression of its subject. Did you notice that roller coaster move?
I am having a dream come true, and cancer had better not interfere! I have been invited to join a dance group I had only admired from afar. Feeling very honored and happy. Seize the day!
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Everyone, thanks for the encouragement. So many feelings these says, including isolation. ...
ShetlandPony...I might be at fault for the long wait :-( changed MO's and ended up with one that was even gloomier. Went up to Boston and a wonderful doctor gave us hope and explained there's treatment options to try, and suggested collaboration with local center, so now onto 3rd MO. This week I mentioned my port was removed in November 2015, so getting a new one postponed treatment one more week (which feels like a year)...trying to start next week and getting the port later...not sure if Dr will agree yet
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Definitely try. I got my first infusion without a port, then my second infusion the same day as port installation. Glad you didn't have to settle for a gloomy MO. (P.S. If you want to fill out your profile, it will help your friends here understand your situation.)
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Hi All,
Haven't had much to contribute recently, as I'm on a different path with liver mets. Hospice choices differ from treatment choices, but I thought of something that might be helpful for others with compromised liver function - different routes of administration for drugs.
I learned this from MTF transsexuals who were taking estradiol to develop female sex traits. For a couple of years I took estradiol for my ER+ breast cancer in an effort to both treat it directly and to resensitize the tumors to anti-hormonal aromatase inhibitors. Another, longer story.
I learned from these women that allowing the pills to dissolve under my tongue softened their effects on my liver. It's a method of action called first-pass effect. By allowing drugs to enter the blood stream through the mouth, rather the stomach, their first pass through the liver was detoured.
I'm probably not describing this completely accurately, but now that I'm taking liquid morphine for pain, I've been given the same advice - hold the medication under my tongue or inside my cheek until it's absorbed, rather than swallowing it to spare my liver. Also, I can take less of the drug to get a bigger effect.
Here's wikipedia on the first pass effect:
excerpt: Alternative routes of administration like suppository, intravenous, intramuscular, inhalational aerosol, transdermal and sublingual avoid the first-pass effect because they allow drugs to be absorbed directly into the systemic circulation.
https://en.wikipedia.org/wiki/First_pass_effect
You never know when or how you'll find helpful tips for working with our already stressed-out bodies.
And I'll never know if this actually helps drug absorption or just helps me feel better about it.
Blessings and good healing regards for the entire bco world, including this special liver mets community ~ Stephanie
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Longterm - That is excellent advice. I'm going to pin that up on my board. I hate taking pills anyway and I was thrilled when I got an ondastron (sp?) melt-away in the ER back in March.
It's been a really busy two weeks. The great news is that the biopsy made it to Belgium and I am in the clinical trial! Whoot! I start tomorrow and I am so excited. I find that this time I am not as scared, but I am ready to kick this cancer's butt and if that means poisoning myself, then so be it! (Plus, I bought a lot of really cute scarves this time around.)
My mom is coming up on Wednesday to spend the week and I am really looking forward to that. My dad is going to come up in May and I am hopeful they can come together in July. I had a really nice lunch today with good friends. It was a good way to set up for tomorrow.
I have planned out my chemo outfit for tomorrow and have my bag packed. I will be there for at least four hours and I'm going to try taking a thermos of soup with me for lunch. We will see how that works! I will also be packing my pommagranite juice!
Shetland, I have the feeling I'll be getting a port soon as well. My veins love to play hide and seek.
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hi ladies. Saw onc today. Dark spots that were not seen before he thinks because liver had shrunk where most of disease was. Things spots could be dead cells but 2 weeks ago TM went up 100, he's concerned. So off abraxane and on something called Elibrium? So we will see. Ugh. Hope you are all well. About NED, my onc says not possible, disease will always be there, mmm. I am all about NED!! I started on some tumeric and olive leaf. Hope it helps.
Be well everyone.
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Stephanie, thank you for the tip about those options for taking meds. I have worried about that, so it is helpful to know there are options and I will keep your note for the future.
Lvin, that's why I call it NEAD: No evidence of active disease. Evidence, but cancer is dead. That is possible. But if NED won't come around, the Stable Boy is great, too.
Mattie, that is so great that you got in a trial. What is the trial? You go, girl! Enjoy the cute scarves and the time with your family and friends. Treat chemo day like a day off with a picnic if you can, and thumb your nose at cancer. I made a chemo day play list of music, too. It was music to nap by since I got Benadryl in the pre-meds. A port can eliminate the pain and anxiety of a vein hunt on chemo day.
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Wow...this thread is hoppin! Stephanie, thank you, thank you for the great advice. Every now & then I get sublingual vitamins at the health food store. They have a bit of a citrus flavor (I'm hoping they can mask morphine!) that I like...until I worry about dry mouth & maybe it could cause cavities...the things we worry about...ugh. I know it's absorbed more quickly, didn't know it was gentler on the liver...I will bank that info too!!! I hear the same on NED from my onc too, Lvin & Shetland...I had no lymph node involvement with any dx, but critters still crawled into my liver. I asked onc Wed what the chances were that it's possible my liver was the ONLY place & since I'm stable & TMs are good, I can take a deep breath. He said to keep breathing, all the while knowing the blood stream can carry this anywhere. The topic came up because I asked about scans. I haven't had them since Aug & he said they aren't planning any. Said w/TMs good (faithful to me) & good physical condition, no scans. He said if some little thing showed up, they wouldn't really know what to do with it...has to be a combo of how I feel, markers, etc, before he'll scan.
Mattie...this is such good news! Hoping it's a trial that puts bc away forever!!!! Love your awesome attitude & I second the port landing!!!
I know there are scans in the works....prayers for good news on here.
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I feel I sabotaged my situation and made it even worse. :-( I'm an emotional wreck.
Found out about liver metastasis (4.5 cm tumor) March 4th. Changed MO, she was going to start me on treatment April 1st but gave me an expiration date and very little hope, so went to another Dr out of state that referred me to my current one. Was going to start next week but brought up not having a port anymore so they are moving me again. I ask about starting and getting port later but nobody listens.
I feel so guilty for delaying treatment an additional month. I'm devastated and feel no body cares because I'm already stage iv?
Hope you don't mind my venting session here
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gramen,
Sorry, sounds like you have been yanked around. Do you have just one tumor? I would be upset also, if the MO wanted to talk about the end, when you have just been dx & want to continue tx.
I had my port yanked back in 2014. I kinda knew it was a mistake, but I needed to feel like I was moving on. My MO asked me this morning if I wanted to schedule surgery for another port ? I told her no, I got great veins
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Gramen, no, no, no, no! You haven't done anything wrong! It sounds to me like you have made very wise choices. You found someone you trust and who has lots of good ideas for treatment.
Heck, 4.5 isn't all that big and as someone pointed out and my MO confirmed, we only need 10% of the liver anyway.
And even if you do have to wait a week, it won't change.
I am infusing right now without a port and wishing I had one. My MO was pretty un excited about me having one reinstalled while I was waiting. The nurse practitioner I saw today agreed I needed one! So, I'll get one in next week on Tuesday and infuse on Friday. Bottom line, tell your MO to start treatment now and set you up for a port after.
Vent away! Heck, I figure being IV means I don't have time to waste on egos or guilt! I found going out to my car and just screaming and ugly crying does wonders when I'm feeling really sad or angry.
Big hugs!
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Thanks for your words. Left another message to see if they start me soon.
I do need a port, only one arm available since I had all the lymph nodes in the left arm removed during my initial dx (2014/2015 tchp/mastectomy/ radiation/1year herceptin/reconstruction). Had reconstruction surgery this past November and port was removed sigh
Thanks for the advice I need to let all these emotions out. Scans showed another 8mm tumor in the liver, and 3 lymph nodes lighting up, well one area is the head of the pancreas but believed to be a lymph node...
Thank you thank you for the encouragement. Challenging place to be, but so glad I found this blog...this time around I've decided " to stay in the closet" at work and only sharing with immediate family. Last
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Thanks for your words. Left another message to see if they start me soon.
I do need a port, only one arm available since I had all the lymph nodes in the left arm removed during my initial dx (2014/2015 tchp/mastectomy/ radiation/1year herceptin/reconstruction). Had reconstruction surgery this past November and port was removed sigh
Thanks for the advice I need to let all these emotions out. Scans showed another 8mm tumor in the liver, and 3 lymph nodes lighting up, well one area is the head of the pancreas but believed to be a lymph node...
Thank you thank you for the encouragement. Challenging place to be, but so glad I found this blog...
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Gramen...you are being an advocate for yourself...good job...don't stop!!!! You'll get amazing info from this place...don't be afraid to use it! I hope you have a family member, friend, someone who can support you in your appts! I don't understand the wait...sounds like they know your plan & if a port is holding it up...hate to sound like a bossy boot, but get the port! Some chemos can't be administered in veins...like my navelbine. It shrunk my 6 & 8 cm tumors (immeasurable, there were so many)...and as time goes by, they aren't getting smaller if you aren't killing them off. I had chemo the day they put my port in. Yep, it sucks to have a port...but I love my going for tx & not having anxiety about finding/accessing a vein. Thinking of you.,,,vent all you want...we all do!!!!
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oh!!!! RonnieKay, I'll be getting Navelbine/Herceptin/Perjeta, may be that's why they want a port before we start. Port scheduled for Friday 22nd and treatment Tuesday 26th...I'll just need to keep it together until then and don't let all the guilt and negative feelings take over
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graymen- hugs
The port will be very helpful. I am close to needing one again s well as I too only have my right arm for all the poking my last CT they caked vascular scan ER nurse to get an IV in. 5th stick.
Herceptin is fine via vein but nots ute about perjeta. And as both those are drugs you will be on for a long time, the port makes sense.
And if you are worried about the slight delay you will be ok. My liver was so full of lesions to begin wit the liver specialists said they couldn't help and wished me luck with that look on their face we all know too well. 3 years later and I'm doing great. Hang in there.
Best wishes.
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gramen- and please make sure they check your heart for a baseline before treatment starts..
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Gramen,
Don't beat yourself up for the delay, you will be ok . But like Leftfoot mentioned please make sure they check your heart before you start on herceptin, perjeta as they effect the heart and you will be on them for a while.
I too had a port which was removed after my first diagnosis , then had another installed upon my second diagnosis.
The important thing is that you found a doctor you trust and is helping you fight the disease.
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Mattie, i am so happy you are up for a trial and wish you a good response, good luck
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hi all. Dr took me off abraxane, scan showed some spots, liver has shrunk where disease was but tms were up 100 points so he's changing meds to Elibrium I think. Anyone else have spots show up during treatment? Dr thinks they might be dead cells, he didn't see them on first scan.
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Livn, i dd not understand the scan showed liver shrinkage while there are new spots? If so it could happen, i had reduction on xeloda in some spots and on others i had progression. But after this i showed positivity on her2. Is he changing you to Eribulin? And can you ask to check or do another biopsy on the new spots ?
You are in my prayers.
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Lvin, I'm another one with mixed results. Some growth, some shrinkage. It's because our stage cancer is very heterogeneous (thank you spell checker!) and unfortunately nothing out there at the moment is a one size fits all. And as I suspected mine has now progressed into bones, one rib and two spots on pelvis, so time to move on. I was given the choice of Xeloda or Eribulin and choose Xeloda simply because I felt I'm not ready to risk losing my hair again so soon after getting a full set of curls back. So I'm on to pill popping and watching out for my hands and feet.
There is a worldwide trial going on at the moment, targeted therapies for HER2 neg which we have in Australia, so Onc is looking into that for me too. Let me know how you go on the Eribulin Livin as it looks like that will be next for me. Hugs to all
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I'd love to know more about this targeted therapies, isy!
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