How are people with liver mets doing?
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Grrifff, my wife has diffuse mets also but triple negative, which had changed from original ER/PR +. Her TMs only went up 10 points from 28 to 38. But the LFTs are what has me concerned. Alt 247 AST 148 and bili 1.6 a month ago. But bili has jumped to 3.4 recently. Took her off X after 2 weeks now waiting to see if bili drops before starting Gem carb.
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Nicolerod, Thanks for the tip on Magnesium OXIDE for constipation! I also get very constipated from pain killers, so avoid them as much as possible. FYI, zofran (great for nausea) also is VERY constipating! I try to get by on ginger and ginger tea when I'm nauseous.
Shetland - Wishing you the best in your liver procedure!
LisaMarieP - The liver surgeon who performed my resection also said that liver MRI was the best scan for liver mets. I was on Talzenna (another PARP inhibitor) for 10 months followed by Xeloda for 6 months. I have two BRACA-like mutations called CHEK2 and FANCA. I've had bone, lymph node and lung mets for awhile, but developed a liver met on Xeloda. Did your wife progress on Olaparib? My oncologist believes that platinum-based chemos (like carboplatin) will not work well after progression on PARP inhibitors. I hesitated to mention this, but I figured that I would want to know. Wishing you and your wife the VERY best!
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Lisa Yes lot of MO like MRI better. So when are they planned to do it? Before you start TX?
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Grannax, the MRI was done already a month ago which showed the progression while on lynparza. I don't believe he will do another one, just blood work to see liver function after being off the X. Then start on Gemcarb. Theresa, it's ok that you mentioned that, I certainly hope it's not the case, as I see everyone responds differently to treatments. I will attempt to do a search to see if there is any validity to that theory.
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Grannax - I hope you get good news from your PET and reward yourself with as much coffee as you want.
Theresa45 - I also tested positive for CHEK2 mutation. Does your MO consider this when discussing treatment options? My MO never mentions it.
K
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LisaMarieP - I'm glad that you appreciated the mention of platinum-based chemos not being as effective after PARP inhibitors. It's always more fun to pass on encouraging news, but I do feel that all knowledge is useful. I will most likely still consider a platinum-based chemo at some point. If you find out anything in your research, please pass it on. I will do the same.
Kc54321 - My CHEK2 mutation has been considered when selecting my treatments. I was on the TBB trial of Talzenna which was evaluating that PARP inhibitor for patients with BRACA-like mutations, such as CHEK2. Some tumors shrunk and some remained stable during my 10 months on the PARP inhibitor. The TBB trial (only at Stanford) has stopped recruiting patients with BRACA-like mutations, but is still recruiting patients for the triple-negative arm. There is a much larger trial of Olaparib in patients with BRACA-like mutations such as CHEK2. It is open at MANY locations. I would definitely look into it, since PARP inhibitors can be effective with an easy side effect profile. Also PARP inhibitors are very well-understood since they are approved in ovarian cancer and BRACA1/2+ breast cancer. Now my oncologist is watching a trial of an ATM inhibitor from BAYER combined with Keytruda. That trial is not open yet, but the CHEK2 mutation would make me a candidate. It's going to be a Phase 1 trial.
Best wishes!! Theresa
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I got through my dreaded PET prep, just barely. I didn't get too cranky until we almost had a wreck on the way home. I had only had three sips of coffee, the rest spilled all over me. That sort of tipped me over the edge. But, it's done. I am recovered just have to do the waiting till late Monday for the results.
Kc. Thanks I'm wishing for both.💞
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Grann...Prayers for excellent PET RESULTS!!!!!
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Grannax - Hoping for the best possible report Monday.
Gumdoctor
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Grannax, hope you have a good, peaceful Sunday and Monday leading into a great PET report!
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Grannax -- Hope you get a good report!
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Grannax - I hope that your PET scan shows improvement and that Xeloda works for you for a long time! Theresa
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Me too. Thanks for you vote of confidence.💞
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Grannax2 - talking about tipping over the edge, it doesn't take much for me to get there! My husband has been very patient with me, as he is the sole caretaker when ever I am down. My daughter lives close by and she visits almost every weekend. Do you have some one with you? How are you managing? Hope you have an excellent PET report and your current treatment shows that it is working. Please keep us posted.
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Grannax2 - talking about tipping over the edge, it doesn't take much for me to get there! My husband has been very patient with me, as he is the sole caretaker when ever I am down. My daughter lives close by and she visits almost every weekend. Do you have some one with you? How are you managing? Hope you have an excellent PET report and your current treatment shows that it is working. Please keep us posted.
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S3K5. I live alone, my husband died in 2010 of pancreatic cancer. But, my daughter lives close to me. My son will be at my Dr appointment on Monday. I also have several close friends nearby.
Yep, I have about 24 more hours to get through, then the scanxiety will be over. I'm always better when I know results and have a plan. 💞
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Grannax, You are in my thoughts today. I hope you receive good news about your scans. We are here to support you
Hugs and prayers from, Lynne
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Theresa45 - Thank you so much for that information. I'll look into PARP Inhibitors and discuss with my MO.
KC
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Grannax, good to know you have close friends and your children are close by so they are there when you need them. Waiting for scan report is the worst. Hopefully you have received a positive report today that your treatment is working.
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Grannax, You probably know your results by now. I hope you have good news or a good plan to move forward. Thinking of you and awaiting your news, no matter what.
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I never post on this thread... just stalk once in a while, as I also have liver mets. Two small ones. They appear to be dead, dormant, or something but they are there none the less. Anyway - just scrolled through the last few days of posts and wanted to say hi and tell Grannax that I am thinking of her. There is nothing worse than not knowing. Nothing! Hugs to you while you wait.
XO
Andrea
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Hello -
Cannot sleep so here to give an update...
On reduced dose Xeloda, HFS better...thought I would have a nice follow-up after 2 wks on Xeloda...not...
Liver tests very bad...ALT and AST very high...MO very concerned...stopping Xeloda immediately after 10 days...this is mid cycle #2...scanning on Wednesday...then deciding what to do next...
Gumdoctor
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Gumdoctor, if you search back a couple threads on here and all about Xeloda I've posted this very same thing about my wife. She was on second week of X and I noticed her eyes getting discoloured. She went back to MO and bili level went from 1.6 to 3.4 in 1 month. They weren't sure if it was progression or the X causing it so they stopped the meds. Waited 2 weeks to recheck blood . Got results yesterday and bili hasn't moved up or down so still not sure what made it go up , but MO said Xeloda is very hard on your liver and could still be causing it to rise . They do believe the X did some work in the short time she was on it though since she has been feeling better and stomach went down from mild ascites. They are moving her to Gem carb very soon. Not much decisive material here but at least it's some kind of info , hope it helps.
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Gumdoctor, adding my voice to the chorus of folks sending you support and positive vibes. I, too, have heard X can be very hard on the liver. If this is the case, then you're well rid of her, and on to a better, more effective treatment. You're in my prayers, love.
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Shetland, Grannax2 and Gumdoctor..
Please keep us posted. Add me to the list of those who care and hope for good and treatable outcomes.
S
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Not good news to share. X failed. Liver mets much worse, also mediastinal lymph node is worse. I feels like I just wasted three months. I don't know what my next options are. I will talk to my MO tomorrow. Very discouraged.
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Grannax, I am sorry that you didn’t receive good news. My experience with xeloda was similar to yours. During the three months I was on xeloda, my liver mets grew and multiplied. I hope your next treatment is effective for you.
Hugs and prayers from, Lynne
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Grannax, not news you wanted to hear. Sorry you received disappointing news. Now may be time for another Y90. It seems sometimes it is the only thing that can truly beat the liver mets back for a good chunk of time. I hope your next treatment knocks back those pesky liver and other mets.
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Sending my healing thoughts and prayers to all who are going through progressions now. I started with liver meds then they moved my stomach and created a blockage which required a feeding tube , Halaven was and took care of the blockage and worked well for a while, but three weeks ago started getting bad ascites and then confirmed with the pet scan that mets exploded pretty much everywhere in my abdominal, peritoneumand gastric systems.
My MO changed my chemo to gem/carbo last Tueday. Today I had a drain put in so that I can drain the ascites a little at a time more frequently. Since this started just over 2 weeks ago I’ve had them drained in hospital 3 times over 4.5 each time so about 14 total and they had Tom stop today before getting them all. The hope is that the new treatment will control the ascites and mets. Tomorrow the hospital is going to call me to talk about options for home health care to assist with the drains I live in the East Bay in the San Francisco Bay area. If anyone in this area has had experience good or bad with home health care agencies I would really appreciate your feedback.
I haven’t been posting on this thread for about a year but it is where I started and I have always found it a great source of information. It sounds like a lot of us are dealing with progressions after multiple lines of treatment. I look forward to sharing information about new treatments and options. My liver is no longer my primary that site so I’m not sure any of the Liver IR processes are good options for me .
Hugs, love and prayers to all.
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Grannax, I'm so sorry.
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