How are people with liver mets doing?
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good news on reduction of mets Sandilee. My liver enzymes are also elevated a little; pretty sure from gemzar.
My onc said the one she watches is bilirubin. That one you want in normal as it shows how the liver is really functioning. Scans are the gold standard. Our blood work is off most of the time b/c of the drugs they are giving us. I try to not get too excited about elevated stuff. Unless it's TM.
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Sandilee, great news on the scans! Shrinking is good!
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Great to hear Sandlilee. Dreaming of the day I can say my liver mets are less than a cm. Not sure it'll happen really, but so long as they stay stable, it's good enough.
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Sandilee, great news on reduction, wishes for more reductions in the coming year yayyy!
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Sandilee, Any progress is always great news! Hopefully the enzymes don't keep creeping up as they did with me on the Letrozole/Ibrance combo. Mine ended up sky high like 500 and 700. Do your happy dance!
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Thanks, everyone. artistatheart- I didn't know that Ibrance/Letrozole would affect your liver enzymes. I didn't have that problem with it--it just didn't work for me. My neutrophils were very low on it, though.
It's so interesting how differently we all react to these medications.
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Hiccups, heaving, retching, vomiting...are others dealing with these too?
Can be treatment-induced unwanted effects or disease symptoms.
Would love to hear from others and am writing a post on hiccups to share later.
Thanks, Stephanie
I have mets in and on liver as well as in lung/pleura, nodes, chest wall, a few bones and in belly (ascites plus nodules)
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sandilee, i think I am still not sure if it was the (generic) Letrozole that caused the enzymes to shoot up. I feel that I had not been off of the Ibranc long enough ( a week) to give the enzymes a chance to go down when she pulled me off Letrozole too. Plus a lot of people were saying how differnet manufacturers use different fillers on the generics and they experienced less SE's when they switched. I asked my Onc about that and she dismissed me very quickly, in fact told me that there were no generic forms of Femara! Now she put me back on Faxlodex/Ibrance so I am anxious to see if my enzymes stay down. i hope so I do want to have to switch again so soon.
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Good luck with the Faslodex/Ibrance combo, artistatheart. I had a great, nearly 4 year run with Faslodex, by itself, where my bone mets reduced and then stabilized.
Do remember, too, that if you ever wonder if you're on the right track, a second opinion is always an option.
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Sandi...hooray for shrinkage! May it continue! 1 cm can be a huge celebration...I had some 8 cm buggers & I happy danced w/each scan!
Artist...letrozole is the generic for femara...don't know what your onc was thinking. I know I get nervous when I get meds from a different manufacturer. Last time I called my drug co & asked why my letrozole came from Israel. He said it was one of the major suppliers, but if I requested, they'd give me American made. He suggested tracking ses, but I had none, and he shared the same info about different fillers. I was on femara w/my 1st dx (before generic was available), continued letrozole through second & now after mets (when I stopped navelbine & now just have herceptin/letrozole). I considered it a failure...since I had the other dx, but there must be something my onc likes about it...can't figure it out. Hope your new regimen is the best!!!
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Sandilee, I did have a 2nd opinion but it was early in, so I would be going for a third, which I still think would be a good idea. Even if they concurred with my current it would ease my mind. The Letrozole/Ibrance was working minus the enzyme problem. I am still very curious if I could return to this AI later from a different formulation/company. Thanks Ronniekay, to me it was unsettling that she did not even know that what I was being prescribed by her was a generic form of Femara. She said that Femara was still under patent, there was no generic!!! The patent was over in 2008 with now 11 generics...It all seems like such a crapshoot sometimes, but moving on I hope the Faslodex is a winner too! I do have less SE's with this so far. Get my second loading dose tomorow. Sore butt here we come!
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Artist, good luck on faslodex, i hope it works for you as much as it worked for others. Sorry for the soar butt though
) but if it works, it would be worth it. Personally, i got four opinions upon my first dx and i went with the two which matched. I prefer not to take generic drugs unless necessary. Keep us posted. Hugs.0 -
Thanks Woody, If it is working I'll take a sore butt any day too, for sure! It actually wasn't bad at all the first round. I have just heard down the road it starts building up and getting worse. I just can't seem to get a confident feeling with this woman. She has been off putting more than once but I hope it changes as i get to know her. I still plan on adding a third person to the mix for my own peace of mind. As far as generics i was just curious if changing formulations i.e. fillers might help with the enzyme issue, but I got shot down pretty quick. How are you doing Woody? Feeling OK? did you have nice Holidays?
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they always shoot down when they don't want to answe. I have four oncs, i trust only two of them. So whenever the two in my country tell me something , iche k with my favorite two and whatever they tell me i do. I am sure faslodex effect will build up , but i hope it won't be so bad.
I has a great holiday mainly with family and some close friends. Had my PET and it is still clearand NED thank God. The next one will be in April.i hope you get the most out of faslodex. Hugs.
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That's fabulous Woody! May your NED never end! I am hoping to build a bigger team so I have choices can feel good about as well. Right now Faslodex seems like a good move. Most people feel pretty good on it. I won't get another PET until late February so we'll see how it works! Happy New Year!
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Happy New Year to you too Artist , i hope itwill bring you stability and good health. Hugs.
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Hello everyone.....I have been absent for quite some time. Someone pages and pages back had talked about being 'stuck' and unable to get their thoughts down.......that certainly describes me for the last few months. I finished a little over a year of taxotere and herceptin last summer...had a small progression near the base of the diaphragm and I was put on Kadcyla. The upside....I got my taste for food back and gained some strength. A big downside though.......it wasn't working for me! On the Monday before Christmas I got the results of my latest scans.....lymph nodes lit up in the abdomen, more nodules in the lungs, an enlarged node under my left arm and to top it off a palpable lump in my left breast. That was not a good day! So now I am on Navelbine weekly and herceptin every 3 weeks. Hoping it will knock this progression back.....I want to see my DD graduate from college in May so very much! So far I am tolerating the navelbine ok....getting tired again though. The Dr thought the breast lump felt smaller already so while I do not usually look forward to the next scans, I am anxious to see how this treatment is working.
I also had a procedure in Oct to address the pleural effusions in my lungs. They put talc in the left side and inserted a pleur x catheter in the right side that we have to drain 3 times a week. I really did not like the sound of that when the surgeon told me about it, but I have to say it has been better. One of the few bits of good news on my scan results was that the pleural effusions were much improved and the left side is almost resolved. I take good news whenever I can get it these days!
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Jaytee, welcome back. I am sorry for your progression but hopeful the lungs are better. I hope this combo will work for you . Looking forward to hearing in the near future some good news from you. Hugs.
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Jaytee- so sorry for your progression but happy to hear your plural effusions have improved.
Take any win you can and savor it!!!! You deserve it!
Babs
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Jaytee, welcome back and thinking good thoughts for that next tx. A resolved pleural effusion is a good thing for sure. So my liver enzymes were up again today and my Onc and I both suspect it is the Ibrance. i also think it is what is causing the rapid heartbeat so I am quitting that for awhile to see how it goes. Onc seemed much more open to listening to my opinion today and even asked me if we were OK. So it seems we are back on track for now which I am happy about. We decided to go ahead with the 2nd dose of Faslodex. The liver Dr wanted to do another liver biopsy but I asked my Onc if we could wait to see if staying off the Ibrance brought down the enzymes first and gratefully she agreed.
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Thank you everyone. I definitely can take deeper breaths ....and the cold winter air is not making me short of breath like it did last year.
I say goodnight with good thoughts and prayers for you all.....that all of you that are Ned will stay that way for a long time and that more of us will get that good news! For those of us in active treatment, prayers for finding the right treatment for each of our situations, wisdom for our Drs and ourselves, for a night of good rest so we can face whatever comes our way tomorrow. Goodnight and hugs!
judy
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Thank you everyone. I definitely can take deeper breaths ....and the cold winter air is not making me short of breath like it did last year.
I say goodnight with good thoughts and prayers for you all.....that all of you that are Ned will stay that way for a long time and that more of us will get that good news! For those of us in active treatment, prayers for finding the right treatment for each of our situations, wisdom for our Drs and ourselves, for a night of good rest so we can face whatever comes our way tomorrow. Goodnight and hugs!
judy
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Ascites, paracentesis procedures and indwelling drains
Anyone else with liver/peritoneal mets dealing with this right now?
My usual penpals, Rose Valley and Torridon, are offline and I'd like to connect with others facing similar situations.
I've been dealing with ascites for over a year and have had an Aspira indwelling drain since August 2015.
Okay to PM or reply here.
Thanks in advance for answering my call, new friends.
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Thankfully not Longterm. It sounds like a massive misery though and got to hand it to you for dealing with so much all at once. Best wishes to you.
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i JUST FEEL OVERWHELMED TO POST THAT I RECIEVED THE PETCT SCAN RESULTS TODAY AFTER 3 CYCLES OF GEMAZAR AND CARBOPLATIN
THE PET CT SHOWS NO UPTAKE ANYWHEREIN BODY AND ALL LIVER LESIONS ARE REDUCED IN SIZE AND DO NOT SHOW ANY UPTAKE ( NO SUV) AS WELL AS THE ILLIAC BONE IS COMPLETLY HEALED (NO SUV)
IN SUMMARY IT STATES THAT---PATIENT HAS SHOWN COMPLETE METABOLIC RESPONSE TO THE TREATMENT
WE MET ONCOLOGIST TODAY AND HE SAID TO CONTINUE WITH 3 MORE CYCLES AND THEN SWITCHOVER TO AI WITH OS
GRACE OF GOD NOTHING ELSE
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Many
All I can say is reading what you wrote made me cry. That is just so wonderful!!!!!! I am soooo happy for you!!!!! May this continue for a VERY long time!!!!
Babs
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Oh Many,
What wonderful news!
Congratulations!
I hope you feel even better than your scan results indicate, bringing complete ease of well being and ability to participate in your chosen life.
May your period of NED last a good long time and may AIs be gentle, effective treatment for you.
warmest healing wishes, Stephanie
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many, Celebrating your good news with you! I love to read about good results....wishing you all the best!
judy
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Many,
Wonderful news deserving dancing and celebrating! Wowwwwwww jjust wonderful! God bless yo
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Many, The news we all hope to hear! Happy Dancing for you! May this last forever!
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