How are people with liver mets doing?
Comments
-
Today the new oncologist said the liver mets are the same size and it could be scarring from the lesions - that was through the high definition CT of chest, part of the liver showed. I have the PET CT on Monday (brain CT in afternoon). And my liver is not hurting now.
0 -
We seem to be a pretty feisty group. Not really docile.
Don't you just love auto correct?
0 -
Bluebird, I'm glad you are getting the PET scan. Hopefully it will tell you that the CT is seeing scarring or dead/dormant tumors.
0 -
Shetland! So feisty that I just had my 4th round of Abraxane + a little decadron and here I am writing to check in today. Rooting for good scans for all and love to Lita and Kandy and many more. My plan is to do 9 rounds and scan, if scan is good - Madame X here we come. Fingers crossed.:)
0 -
Go, lalady! Four rounds done! Your scan is gonna be good. Ride the decadron wave. It made me able to leap small buildings on one day, then able to watch a movie and nap the next day. How about you?
0 -
Hello,
After failing on taxol/carbo and a xoleda/Navelbine with my liver mets doubling I am hoping to be a candidate for stereotactic radiosurgery and begin aromasin/afinator. I am feeling scared starting my 4th line, feeling though I am running out of options
Any info on either would be much appreciated
Thanks so much xx
0 -
Leftfootforward,
I am currently on Doxil, and will be starting my fourth round next week. The protocol is one week on, three weeks off. It is from the same family as the "red devil", but a reduced dose because it is palliative, not curative. I did have Adriamyicin during my early stage treatment, in 2007.
My TMs are stable, so far, though I would like to see them start to go down. But, as they are in the mid 100s, I can take this. I've had no side effects really, except for a few mouth sores in day 10 - 14, which are the "down" days on this treatment.
Here's to hoping we all respond beautifully to each and every treatment protocol.
0 -
Emily - I have a friend who went into remission after stereotactic radio surgery to her lung. It can provoke a systemic immune response. You might want to ask about their experience and look for a doctor who understands this effect and under what circumstances it is sometime achieved. This is not a secret one time thing, nor is it something that happens every time. In any case Stereotactic Radio Surgery is a very promising option.
>Z<
0 -
Thanks Zarovka I need to hear something positive, I am in struggle street today...... I have an amazing MO who I have such faith in, but when you are 4th line in you start to lose hope
0 -
I typed a long post on my way home from NIH on Mon and then lost the thing so this one will be skinny. Failed the trial, platelets...grrrr. Actually cried a few buckets when we finally got to the car so grrr hardly captures it. Very disappointing and a shock as they had been steadily rising. Started Xeloda yesterday. Starting does make me feel better but I don't know. So hard to wait on the results...hope it does something. Halaven next if not. If something works, then doesn't...may try again at NIH.
Babs...woo hoo!!!
0 -
Kaaybirg. To date Xeloda was my most successful and longest treatment. I am hoping and praying it's the same for you. But that it lasts longer for you
Hugs
Babs
0 -
Kaayborg what a downer? It's a pity they wouldn't give it a chance with infusion etc...? Did you get to see an Oncologist? Xeloda has proven quite efficient to a lot of ppl with liver mets, what strength will you be on? Crossing fingers it will work great for you. Are you teaching this year?
0 -
Mom, I did meet with the MO so it was good to get a second opinion though it only really served to confirm there is really no next step more promising than another. Unfortunately I have no recollection of the guy's name and I wasn't given any info regarding who I was meeting with beforehand. It was a very laid back operation. Friendly but we were a bit lost regarding a few matters of procedure and wasted some time because of it. My center is much more organized.
The dose is 3000mg daily. I am just 105 pounds so from what I gather that is a pretty hefty dose. May it do good.
And yes, I continue to teach. Still adjusting to the pace and exhaustion after summer bliss.
Always thinking about Dani.
0 -
Thanks sweetie. That's the dosage Dani was on. Thank you for the good vibes. My DD started teaching also,she's teaching High school. So one a light note, one of the young men that gave her such a hard time last year, saw her and was horrified he is not in her class, he ran to speak with the Principal to see if that could be changed. My DD had a laugh, some things never change. Sometimes these difficult kids are just masking who they really are.
0 -
Hi Ladies - on a bright testing note, 3 rounds of Abraxane cut my 27.29 TM's in half. Woop! 6 more rounds to go before scans. If good, I will join club Xeloda. If not, I will ride the Abraxane chair a little longer, but very encouraged. SE's not too bad other than drug rash and fatigue. Kaayborg - rooting for you to do well on X. Emily Louis - please check out the Afinitor thread for info. It's a single daily pill given in 3 doses - the largest being 10mg. Usually its paired with an AI. I had it with femara from May-July. It did not help me other than cause mouth sores, but it may help you. It doesn't affect your hair.
Stay strong and PM me for any details. Momatt - fab as usual, DD's story made me laugh. Z - you are always so helpful. Gentle hugs to all.(()) Claire
0 -
Kaayborg - I wish you had gotten into that trial, but at least you know a WHOLE lot more about trials and trial procedures. Xeloda will give you plenty of time to plot your next move. Honestly, the platelet thing sounds like a random event, maybe even stress related.
That is a motherload of Xeloda. Be ready to dial it back if the side effects are hard. Low doses seem to have the same effect.
>Z<
0 -
Hi Leftfootforward: I am on Doxil right now. Doxil is liposomal version of doxorubicin. The non liposomal version is called Adriamycin or the "Red Devil." I am negotiating some interesting side effects right now.
Feeling down in the dumps though. Just got labs back and my Metabolic Panel show significant escalation of my AST and ALT out of normal range. (First time since I was diagnosed with stage 4). I feel like I just can not catch a break--three treatments in 12 months and we haven't even had time to talk about a back up plan for if Doxil fails. Feeling a little panicked actually.
Kimberly
0 -
Claire - celebrating with you on the improvement. My onc said to me, hope is free and I have a lot of it.
Kimberly - When was your last scan? Have you been put on any new prescriptions or use anything that can cause escalation, like supplements or foods. I am just thinking, wishing that sometimes these are a matter or readjusting a new thing we added that our already compromised liver cannot take on. Hoping your fears are alleviated.
0 -
Katchincolor how about TM's? Also this thing LDH (Lactate Dehydrogenase), just another BT that is given to Dani and it kinda tells a story. It's depressing that it's been going up among other things. Just a thought, maybe check it out.
Bluebird love your Onco's attitude.
0 -
Hi Bluebird-DE,
Thank you so much for your thoughts. Really appreciate them. My last scan was the 16th of August and showed significant progression. I am pretty careful with food and supplements. All have been approved by my MO. I have been a bit blue -- just not handling this situation as well as I would like. Tough to share negative news to my husband who lost his first wife to cancer and to our six kids. I try to keep everything but the "big stuff" (scan results) to myself just to keep the temperature down. Hearing about high liver enzymes (first time) after two weeks on Doxil has really hit me hard. I know it shouldn't. I know that two weeks is nothing. It is just that the pain is getting worse, my skin is getting itchy and my breathing is being affected. And I have found the first two weeks on Doxil pretty hard. Makes me second guess if I should have gone on a clinical trial that I was afraid to participate in because one of my two oncologists was concerned the trial wouldn't knock back the liver tumors fast enough. Both MOs agreed Doxil was the next best step if I didn't participate in the trial.
Of course this situation is something that all of us deal with every day. I just keep praying, as I am on my fourth treatment since August 2016, that something kicks in soon! Again Bluebird-DE thank you for your thoughts!
Off to go research!!! Hope to follow in the footsteps of the amazing women here who have got the research of clinical trial stuff down!
With love and hope,
Kimberly
0 -
Kimberly, I couldn't help but note that your bad news scans were on the exact date of mine. How extensive are your liver mets at last scan? I just began treatment Wed but am in the same crazy wait boat you are in. I hate the guessing about whether or not it's working. And I am worried and so impatient to know what's up. Thinking of you. Come on Doxil.
Z it Is funny you mention stress and platelets. The MO at NIH shared that platelets sometimes rise with stress and so recommended I climb some stairs before they retested them. I decided I was too fit to just climb them and so ran them...all 15 flights, more than once, though not without resting in between. Went up 13k but needed 13 more still. Today is the first day I can walk without calve pain. But I give myself A+ for crazy effort. And seriously, so sad to be turned away as not healthy enough for the trial.
0 -
Wow kaayborg - that is interesting to know about platelets. You get an A+ for showing up. Bonus credit for leaping up 15 flights of stairs. They get an F for having screwed up requirements.
I appreciate very much that you shared your difficult experience. It's important to be prepared for the trial process.
>Z<
0 -
Kaayborg, just a little confused. You RAN up 15 flights of stairs, but not healthy enough for trial? If I ran up 15 flights, I would change my name to Wonder Woman.
0 -
hey Claire, what a great pic. Sorry, I keep missing some threads, just saw that.
Zarovka, you are absolutely right!! MO was happily surprised to see how my liver mets shrunk so fast in the last couple of weeks
TMs still need be under control, yet I already feel better, having 3 liters of liquid drained from my belly last Thursday. Switched to weekly Taxol keeping Xeloda.. Taxotere worked good but 3-weekly dose really got harder to deal with .. so far so good.. I can concentrate, do stuff and rhis is just day 4 of chemo.
Summer ended here, days are a bit chilly. Yet I love the Autumn sunshine, born in November.
It is interesting how one day you feel like it's the end of the road and then somehow can and do get up on your feet again, right Kandy?
Thanks for all the support, I love you all. Hope to get better results faster with my liver. Other mets seem to be more dealable.
Hugs
Ebru
0 -
Glad you checked in Ebru, I so agree with you on that statement. Although I know the end of the road is somewhere in my future, I know I surely have many more miles to go. Just keep trudging through it. Wishing and praying for the best for everyone.
0 -
kaayborg, I was thinking the same thing as Sandi about your health status. Ironic....Hope Xeloda kicks butt for you.
Ebru, wonderful news how you are on the upswing!
Kimberly, Hang in there girl, there are still bunch of Tx in the arsenal and one of them will catch. And new things happen every day. Don't hold too much inside or like me you will eventually have major blow outs anyway....
0 -
Emily-Louise, if your "stats" are up-to-date, you have not been on an anti-estrogen therapy for eight years. Is that worth considering? Maybe the Afinitor+Aromasin that Lalady pointed to, or Faslodex? Also, from something I read on another thread, you have not been on your current chemo very long, right? Is the tumor size increase based on a CT scan? Sometimes tumors swell before they shrink, according to my onc. Has your onc considered using a PET to verify progression? Has he/she rechecked the ER, PR, Her2? Possible to get a genomic assay like Foundation One?
Kaayborg, that must have been beyond disappointing to have the blood test exclude you from the trial. Are you allowed to try again later?
Lalady, awesome, 3 rounds and TMs cut in half. This is working.
0 -
Ebru - I think about you a lot. It's such a pleasure to fine you checking in. And the progress on the liver mets ... wonderful news. Upswing or downswing, you are in our thoughts.
>Z<
0 -
Been off Xeloda since the 6th and liver area still doesn't hurt. Off tx while a lot of health issues are sorted. Scan on Monday, brain, body PET CT. I hope they will do it with all this rash I have from what seems to be the prednisone dose being upped for lupus issues. Am a mess. Will not be able to hide it on arm when they do injection. I will be off all rxs and supplements for days then revisit on Thursday to see what did this to me. But am looking into just taking the most necessary only due to liver being overloaded. Paring down, lupus flares being controlled by no sun at all, no getting tired or over doing and maybe I will be all right. That and a lesser dose on Xeloda for breathing issues.
0 -
Shetland, I was given the option to test again this week but that would have put me at 5 weeks without treatment and risked liver numbers disqualifying me. Mostly it was platelets I felt I couldn't wait for. On carbo they steadied at 85 for a year. Didn't think it would be long at all before they recovered to 100 post treatment but apparently they've had it with me. If 5 weeks isn't enough who know how long would be? Just had to get on something and I tell you honestly I still worry I made mistake in trying to wait. All those thoughts I remember having at diagnosis keep creeping in, imagining my family's grief, seeing my life from the outside, etc and finding myself alone in the bathroom and sneaking in a cry. It surely is like being diagnosed all over again.
I am ultimately okay and know the facts and that I have many treatments yet to try. Tnbc is frightening in it's own right though. It grows so fast. I have to find another effective standard tx before I can attempt a trial again. They all have at least 3 week wash outs. If X doesn't work, and I can't find a single tbnc gal on these boards for whom it has, I won't be able to wait for the trial as next line...that would be at least 11 weeks without effective treatment. I think my liver would be a complete mess by then. I do so hope to be able to take a shot with immunotherapy at some point. That's where the durable responses are for tbnc. Though only a lucky few land them, I gotta know if I'm one of them. What is most upsetting at this point is the timing of everything...why I can't get to the treatment I need when I need it through all the red tape. Trying to work out the best strategy as every day seems to matter.
0
