How are people with liver mets doing?
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Kaayb - Epirubicin or Ellence is part of the red devil chemo family, ie adryamacin (sp?) and Doxil. Hope you feel better!
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Bluebird. I was also under mild sedation and not general anesthesia.
Bab
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Bluebird: my liver biopsy was done under local. They just injected the site with lidocaine I think and did the biopsy. I was awake the whole time. It was not bad. I did feel a little poking around when they were doing the biopsy but was very tolerable. They can also provide you with local sedation and not put you to sleep.
Glad your PET/CT scans were clear. Sorry about the liver mets. I think Caris does a bigger genomic profile than Foundation One from what I get in my reading. That might be the better test. Caris test for ER, PR, HER2 also where Foundation One does not I believe.
Here is a webpage that compares Caris, Foundation One and OncoDeep&Trace that might be useful to everyone. Look for the graph at the bottom of the page that compares the three.
https://www.linkedin.com/pulse/20140804144152-6371...
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Whew. A lot going on.
Thanks for the details on what they do with biopsy tissue. That is hugely helpful. They don't want to give me any information about how they handled the sample... now I have specific question and that will get answers.
Kaayborg, I know this may sound crazy. And I am no doctor. But I do know that one of my doctors had renal cell cancer, which pretty much kills everyone in short order. He cured himself with a treatment that, among other things, induced a high fever. He told his wife to absolutely refuse any efforts by the doctors and nurses caring for him to reduce the fever. It was a piece of what cured him, in his opinion. That sounds like an immune response and do anything that you feel comfortable with to get out if its way. I am feeling very positive about how things are going for you....
I just had local a local hyperthermia treatment today prior to gemzar. More like a spa experience than what you are going through, and the purpose is very different than full body hyperthermia, which simulates a fever. But they got the area around the tumor in my liver up to about 106 degrees, briefly.
So I got my first IV chemo today ... Gemzar. 600mg. Anyone knows how that compares to the doses used to directly treat cancer in the US? The IV urned like hell once the Gemzar started flowing. They had to slow it down, put a heating pad on it. Anyone else getting burning sensations when the drugs are flowing into their veins. Slight difficulty breathing later in the day. Is that the gemzar? I only get two IV chemo treatments before starting the immunotherapy, but my experience today bodes ill for chemo in the future. it was not easy.
>Z<
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Z - that burning is definitely the gemzar. I experienced it too and for a while did the same as you with slowing and the heating pads. However, after some time I developed phlebitis at every previously used IV site and this persisted several weeks even past using an IV for gemzar. I regretted not getting a port sooner as this solves all the burning problems. If you're on it for long, I really recommend a port. I'll check my notebook to see the amount I was given in a sec.
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Thanks. It's nice to know that the port will deal with it. I will need to get a port sooner rather than later, if I get to IV chemo. It helps to be mentally prepared so I don't drag my feet about getting that done.
Here's is a thread from the knowledgeable fighterm on the abscopal effect. She presents it as something seen in response to local treatment of mets by radiation, but any time you can kill cancer in a way that floods the system with neo-antigens, the immune system may (finally!!) recognize that it has a problem to deal with.
>Z<
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Sorry, Z, I can't find any specifics on the amount of gemzar. Fyi- that burning is unique to gemzar...no other iv chemos that I know of do that. And very interesting about the fever.
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Z: I am on gemzar and my dose is 1,054mg. Here is a web page with Gemzar dosing: https://www.drugs.com/dosage/gemzar.html
Look at the breast cancer dosage. Did I read somewhere that your chemo is given to help weaken the tumor cells to set up for the immuno cell infusion, so maybe your dose is suppose to be smaller? Not sure about that.
Port is the way to go. I have a port and have no problems with infusion.
Hoping your next infusion is less difficult.
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Z and those on Gemzar, I had 1,054mg on Monday as well, and yes it burned going in. I also had Carbo at the same time. I've been super nauseated and vomiting despite 3 anti nausea meds on board. Called nurse, and they are admitting me this afternoon to control the pain and nausea. Part of my problem is that I'm unable to take my Morphine because of the nausea and now I'm way beyond my pain curve. Had a bit of breathing problems too, Z. I think I need a port as well.......Thanks for listening guys......
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Hello Z,
Could I please have the place of where you are getting treatment in Japan? My mom has tnbc in her liver. She's failed many chemos and she is running out of time. You seem like a very intelligent lady so I believe you picked a good place. I need to do something for her . Thanks a lot
Christina
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Lindalou: I would recommend a port. I get gemzar and carbo as well. The port insertion is done under local. They just numb the sites for insertion. You are awake the whole time or that was how both of my port procedures have gone. Once the port is in, you put numbing cream on the access portion of the port 30 minutes before treatment and you do not feel the needle insertion into the port at all. I highly recommend a port if you are going to get chemo for awhile.
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Z - yes please plan a port for future chemo. There are two port location choices; near clavicle and the upper under arm. I will do arm when my veins give out from Abraxane, but so far no port! Burning is def Gemzar. I joined Inspire to follow fighterm and found 138 possible immunotherapy matches for me. Ladies please check out Inspire and the quiz they have to match your cancer to possible trials. I found several here in LA and one near my sis in Phoenix. All will be in my pocket after scans. My onc signed me up for chemo through Nov, so 6 more to go, making it an even dozen. Experiencing a little neuropathy in left foot, which may end my A train ride. Liver panel still normal, maybe the PET will show reduction of uptake. Lindalou - sorry to see you are in pain. Can dilaudid help you? I can't take morphine either.
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Lindalou, I am sending prayers up for you and hope that the pain and nausea are under control soon. You need some relief! The hospital is the best place to find the "ideal" medications and dosage for you. The medical staff there can also look for the source of your breathing problems. I hope you are feeling better soon and are discharged from the hospital as soon as you are ready
Hugs and prayers from, Lynne
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Z, I wish I had your energy! That fall pic that was posted is so pretty. No fall here's in AZ, have to go up North which I am going to do.
Dr is hoping the triple combo will show results in 24-48 hours as far as the ascites. Liver enzymes elevated so this crap is waking up. I have been miserable that last few days.
I hope all of u are well
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Sorry I can't read any posts-on the run but wanted to share that my prelim on my scan shows liver mets decreased in size.
This GDC0077 is working and they told me almost everyone on this trial is having similar results-this could be the answer for so many of us
I hope!
Babs
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Babs, that is so great to hear it is working for you and others. Do you know which arm you are in? I recall there are three arms? Is that right? I mentioned the trial to my MO since I can no longer participate in the FRGR1 trial due to lost biopsy. My MO told me I could bring him info on the GDC0077 trial so he could see if they could request to participate in the trial at my cancer center.
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JFL- There are 3 arms of the trial
#1- GDC0077 by itself- this is the arm that has not been as successful as the 2 others
#2-GDC0077 & Letrozole- this is the one I'm in
#3 GDC0077, Letrozole and Ibrance
Z I've been on MANY chemos. The only one that I had an issue with was Gemzar-I cried during every infusion. It made me feel sick and nauseous. Since my TMs were rising on it, I thought (and was right) that it was NOT working. If it had been working I would have definitely gone the port route. It was just too much for me to bear!
Babs
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WOOOOHOOO babs.
And nice work on the immunotherapy research lalady!!. We all need to be thinking ahead despite the best efforts of our doctors to avoid the question of what is next. I hope folks follow lalady to that quiz she suggests. Also consider the Cancer Research Institute trial matching service. Now. ESPECIALLY if you are NOT in the middle of a progression crisis. Get your questions for your onc lined up ...
I would certainly be looking at that trial babs is in if I did not already have a plan at the moment. Impressive results. I believe that Babs has been struggling to find something that works and this stuff she is taking is kicking a@#$.
>Z<
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Hi everyone. So I wanted to say hello and tell you how reading about everyone's fight has been keeping my spirits up. My Mom is recently diagnosed (August) with bone and liver mets. She was Stage IIB ER+ PR+ Her2- from 2013 (no lymph node involvement just a bigger tumor) so its been kind of a shock for us and we're still reeling. She's been started on Femara and Ibrance for about a week but her liver enzymes are still elevated and she's pretty wiped out. Some of her liver enzymes improved but the one causing her to be slightly jaundiced went up (where previously it was normal level) so it feels like we're treading water right now. I'm thinking we all want her to improve quickly, so there's kind of a impatience, but reading about many people here who when diagnosed with liver mets went on chemo to "put the fire out" has made me uneasy about the current state of treatment considering her present state. I'm not sure whether I should feel ok that we're just on the first line treatments and I just want her to start feeling better now, or if the onc is making a bad call. I have to tell myself that if things were really out of hand the onc would move quick, but I can't shake that nagging feeling. Thanks for listening. -PDX
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Ibrance w Femara can work quick and magically. But it must be watched closely. As soon as there is any reason to think improvement has stopped then that must be proven and tx changed. I learned the hard way and have read of many who say it stopped working for them too. But when it works, it is quite fascinating and rapid. I had a hard time tolerating too, exhausted, loss of appetite, depressed. Just my two cents.
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Thanks Bluebird. That helps calm my nerves. I'm thinking (and hoping) a lot of what's going on is side effects of the treatment so fingers crossed!
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I've been reading and trying to catch up after a while away. I'm so sorry to hear about those who are experiencing progression and crises. I'm also enjoying all the photos from Zarovka and thinking nostalgically about my time in Japan over 20 years ago. I hope that this treatment does what it is supposed to do!
Mostly, I'm thinking that I need to be reading this thread more often. There is so much collective knowledge here, wow. And so many knowledgeable individuals, too. Thanks to all for what you have shared and continue to share.
-Lisa
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PDXson - I thought the Ibrance was harsh for me but after reading through three forums I realized the Femara is no picnic. I said I thought it was a benign little pill. But it definitely had strong SEs. My oncologist wants me on systemic support too / hormone therapy and so we are revisiting Arimidex which I did well on.
Right now I am analyzing my scans and labs to see if going back on Ibrance for the liver lesions will be a viable option. Xeloda let them grow and get stronger in uptake, after 6 mo. If the liver was 'repaired' when I was on Ibrance then perhaps..... the problem would also be how to maintain that clearance, and the NEAD I have right now once the liver is clear again. Ibrance only worked for 2 1/2 mo, so I only have a short spurt to see if it is the thing I need right now. Or radiation, CyberKnife is my choice.
Being on 40 mg lasix has helped the cellular fluid build up in my abdomen and stomach, upper thighs. The more that helps the less discomfort I have in the liver region 7 / 8 where lesions are. It was feeling like a giant bruise.
Oh, I had said I was going to pay attention to my liver on how the Xeloda was working for me. But I did not remember that the liver wraps around the trunk at the bra line. So I thought that pain and discomfort was from fluid pockets or even trunkal lymphodema. Now I know.
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PDXSon - I was on Ibrance + arimidex for 18 rounds, took about 6 to kick in and my TM's dropped to normal. Really was easier than chemo, if she has too many SE's she can move to lower dose of Ibrance @100mg or maybe switch AIs. For me arimidex was easier than femara. Check TM's monthly with her onc and review scans to see how she is doing. Scans are better indication of a good response. Wishing the best for your mom.
(())
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lalady, I can't find the Inspire you are referring to. Can you give me more information so I can find it in the web? Thanks.
Stefanie
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Hi Stefajoy - here you go. This was a recommendation from Z, they have some very savvy ladies including Fighterm. https://www.inspire.com/groups/advanced-breast-cancer/
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Babs, I'm so happy to hear that your scan shows decrease in liver mets; your trial drugs are working! Steady as she goes.
Thank you for the comparison chart, Hartrish. I will discuss it with my onc at some point.
Lindalou, LvinAZ and anyone else with pain and/or nausea, sending my best wishes that you feel better very soon.
Lalady and Z, thank you for the info about trial searching. Lalady, November 6 is just one month away. Looking forward to another good report from you.
PDXson, good advice from lalady. I would make sure the onc is watching your mom closely right now --blood tests, scans, symptoms. If the mets are getting worse instead of better, and quickly, then bigger guns (iv chemo) may be needed to start.
Hi, Lisa! Please share, if you like, what treatment you are on and how you are doing.
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i saw my MO yesterday and she confirmed that I have cellulitis on my face. On Tuesday I woke up with a rash, swelling and itching. I thought it was poison ivy and doc started me on steroids. But, it kept getting worse then I knew it was cellulitis. I've had it before. By Thursday it had spread, my eye was swollen shut and it was bright red. I emailed my MO a pic and she called in dosepack of prednisone and cephalexin.
Yesterday she said if my fever gets to 100.5 or it spreads more to go to ER. My temp has only been 99.2. The good news is that I get to take a break from Ibrance and femara till the rash clears up.
I am wondering if my temp will rise because I'm at low point w labs. I was supposed to start my tenth cycle yesterday of 125. I don't have the results of yesterday's labs yet. I know (personal experience) how quickly cellulitis can become very serious. I'm open to any advice and would like to know if any of you have had cellulitis.
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grannax. I've had cellulitis multiple times and was hospitalized each time. I was given IV vycomycin and zyvox to take at home. To prevent more reoccurrences my Infectious disease dr put me on Keflex 500 mg daily prophylactically and it's worked. If my arm gets the least bit red I up my dosage to 1000 mg per day for a few days. Maybe ask your mo about the keflex. My ID dr said he's done this for a few patients and it's worked for all of them. FYI if you do this you must take a probiotic
Hope it resolves itself quickly
Babs
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I ended up talking to my PCP who has been my doc for over 15 years. She told me to go to the ER now. So that's where I'll be for the next few days, probably.
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