How are people with liver mets doing?
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Grannax, I can totally relate to the way you feel. Hope you are already feeling better today
My tumor was under the rib cage, so the IR had to go through the last two rib bones, which made the pain worse. I take Tramadol ER for my bone Mets pain, which also helped with the pain after ablation.
The pain will gradually start getting better. I took off from work for the first five days, did very little work since my daughter took care of me (brought food to my room).0 -
Grannax - wishing you improvement day by day. Thinking of you and sending prayers and hugs.
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Hi everybody!!
I haven't posted anything for a while. Just finished 12 weeks of weekly taxol with Perjeta and Herceptin added every 3 weeks. Had a CT and got great news. My liver is clear. No mets seen compared to the last CT. I was shocked but happy, Now I get to go only every 3 weeks for Perjeta and Herceptin. I also have lung mets and axillary mets but they also shrank. They are just going to monitor them for now while on just P&H.
Praying for all of you
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That's great news LKinKC!! Congrats!!
I'm crossing this post with the Xeloda post--I have liver/bone mets :
I have a question for you ladies, I just finished my 6th round of Xeloda and find it's not working. I was told 2 weeks ago that my liver enzymes (which were almost normal the 2 weeks prior) tripled and my TMs went up 300 pts. I had 1 round 2000, two rounds of 3000 then back to 2000 because of horrible H/F syndrome, for 2 rounds when these numbers showed up. I had a CT but found out my baseline was an MRI so they were comparing apples to oranges. Not to mention, they were taken at 2 different facilities (thank you Cigna). So in a desperate attempt I asked to do 1 more round but this time 2500 every other day mixed w/ 2000 on other days. This week I noticed my liver is enlarged. I can feel the hardness sticking from under my ribs like it was 2 months ago. I also have a couple lymph nodes on the side of my neck that had been going down but now one has grown again. My MO wrote me today that she want to see me this week and I know it's about changing regimens because she had spoken to one of my other drs about it. SO....what IV chemo do you think they'll put me on for ER/PR+ HER 2-? Anyone know the first choice for IV chemo for stage 4? I had T/C 3 years ago.
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Pamela, oh I'm sorry to hear that xeloda is not doing its thing. How disappointing.
Have you already exhausted the hormone therapies? What about CDK4/6 inhibitors? NCI guidelines https://www.cancer.gov/types/breast/hp/breast-trea...As far as the chemos, the National Cancer Institute says there is no real evidence in support of one regimen over another, so it ends up being MO preference and pt history. This should be the link to the Chemo section of the NCI guidelines but if it's not, just scroll up a bit (for me this link sometimes lands on the chemo + immunotheraphy section for tnbc; the straight chemo talk is just above it) chemo for mets breast ca
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Grannax, I hope that you are continuing to feel better, little by little. I was so sure that the microwave ablation would be a walk in the park for you compared to the Y90s. I'm sorry that your recovery has been tough and apologize if, in my enthusiasm, I misled you to believe that the microwave ablation would be relatively easy. I hope that your next microwave ablation IS much easier.
LKinKS, Congrats and thanks for sharing your wonderful news! It gives us all hope! I hope that H+P will continue to work its magic for a long time to come.
Pamela23, I am ER+/PR+/HER2-. Xeloda was my first chemo. When I developed a liver met, I went on Abraxane (nab-paclitaxel) which was my first IV chemo. She actually suggested Taxol, but I requested Abraxane because I had heard/read that it had less side effects and required less premeds. My oncologist warned me that my insurance may only approve Abraxane after I tried Taxol, but my insurance approved Abraxane right away. I did not have TC when I was originally diagnosed as Stage 1. My hand/foot syndrome was also bad with Xeloda, but it went away pretty quickly after I stopped Xeloda. Make sure to ice your hands and feet if you go on Abraxane or Taxol; it will help to prevent neuropathy. I also used Penguin Cold Caps on Abraxane; my hair thinned a lot, but I still had full coverage.
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Pamela, a typical treatment in your situation with ER+Her2- and needing to get control of liver mets, would be weekly Taxol (three weeks on, one week off). However, you had taxotere before, so your onc might want to use a type of chemo the cancer has not seen before. Did you have a liver biopsy before trying Xeloda? If not, your onc should order one to see if it is still ER+Her2-, and to send a tumor sample for genomic testing such as Foundation One, which could help direct choice of treatment.
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Grannax - I sinderely hope you are starting to feel a little better. Sending a big (gentle) cyberhug your way.
LKinKc - Yaaayyy!! that's great news!
Pamela, I'm so sorry your news is not good. I wonder why your MO did not try a CDK 4/6 inhibitor? Maybe looking for a faster response with the Xeloda? I have liver mets and saw dramatic improvement after 3 months on Verzenio + anastrozole (still hoping for more)...but I know it does not work for everyone.
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Pamela...ask about what I am on Halaven!!!! It is especially great for liver mets...and especially if you have PDL1 expression.
I failed 3 treatment lines in a year..this is the first thing to work for me....Actually I believe you have to have failed Xeloda and Doxil...but maybe if you failed Xeloda and Taxol...you might be able to get it?
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Nicole, I wonder if I’d be a good candidate for Halaven. It is not restricted to HR +ve or HR-ve breast cancer.
My oncologist never mentioned this as a possibility for me. How long have you been on halaven?I have failed or progressed on about 12 different regimens in the past 6 years. Every chemo has worked for 3 to 4 months, then progression. My next treatment will be immunotherapy + Abraxane. I guess this is the standard of care for TNBC. Hoping it will take care of multiple bone Mets and liver Mets.
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S3K5...I am in a Halaven FB group and I would say out of 10 people 7 are TNBC.... or even 8.
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Since today's labs confirmed Xeloda is failing me, I start IV chemo next week. I will be doing Gemzar/Paraplatin. Anyone on this? I'm going to search for a thread. This is my 2nd treatment, praying it will work.
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I’m sorry Xeloda is failing, Pamela. It’s good you have a plan. If you would like to share the reasons for your onc’s choice, it would be educational for us. And if you can update your profile to show after 2/19, that would be helpful, too. How about a biopsy before you get on that chemo? Sorry, instead of support I seem to be giving you assignments!
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pam was your first treatment Ibrance?? I am surprised your doctor is going to Gemzar and not Doxil...did they say why they were going to that particular chemo?
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Pam, I would like to hear how your next tx was decided, too! The more info we have, it can help all of us..if you don't mind sharing.
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Just an aside, I was reading guidelines the last couple days and came across the term/situation called "visceral crisis". I understand this to mean if an organ(s) are in very dire condition. The guidelines differed if there was progression with or without visceral crisis.
Back in late spring before the immunotherapy kicked in & started working on my liver mets & we thought the treatment was failing & my liver fnxn was horrible, my MO told me my next options were xeloda or gemzar/carboplatin.
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Hi, ladies. I'm actually feeling close to normal today. PTL.
I think I had "post ablation syndrome" My friend found a paper on it. Basically, it's a self limiting, flu like symptoms. An inflationary reaction to the dead tumor cells. It seems to depend on the volume of the dying cells. It has fever and everything I had. 38 to 58% of patients get it. I'm going to ask my IR about it. I sure hope I don't get it next time.
The symptoms for me were so close to Covid, I decided to get tested. Both swabs came back negative. That was a scary day.
The good news is that I ate solid food yesterday. Yay. I think the new med I'm on helped. It's called Bentyl. Anti spasm of smooth muscles med. So now I have that in my arsenal for the next one.
My daughter ended up coming over for two days to help me. That was good. I'm very glad she was able to do that for me. Because I was worthless for a week. So glad to be on the mend.
I was able to catch up. Praying for each of you. 💞
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I am very relieved to hear you are feeling better Grannax. I wouldn't doubt ablation therapy throws the body for a loop. There must be some reaction to dead tissue trapped inside living tissue. I think that is what happened to my wife when xeloda killed off so much cancer inside her liver. She actually got worse for a while as the cancer was dying off. It plugged up her liver blood flow, permanently enlarged her spleen and she developed ascites from the hepatic hypertension.
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Grannax,
I'm so happy to hear that you are feeling better. My advice to you is to just not push it -- let your body dictate what and when you do anything. I am now 4 1/2 weeks out, and here and there, I still get a little bit tired. How interesting about the past ablation syndrome stuff. I'm going to try and look that up.
Well, I had my post ablation MRI this past Monday (exactly 4 weeks post ablation). The report posted today on my patient portal, and I have a Telehealth visit with my IR on Monday -- thankfully. Although I made it very clear to the tech why I was having the MRI, and although the MRIs at my cancer center are read by two radiologists -- a "fellow" and a supervising radiologist -- my report is gobbledegook and clearly wasn't read by someone who has looked at ablation sites before. The single most alarming comment to me was that they were concerned that the area (which I know relates to the ablation zone) was larger than the previously seen lesion. Well, yeah, they try to create a margin, much like in surgery. There was also some other language about changes within the ablated area that were concerning. Usually, the language is "necrosis and blood products." This time, not the case.
So, after I took a deep breath and re-read the report, I realized what was going on. I can't wait until Monday to discuss with my IR. But I am really disappointed in the report, because my MO doesn't look at the slides from scans, and she will see this and think that something awful is going on in my liver. Big sigh. Will have to have the IR talk to her, I am guessing.
Always something. Grannax, hope you continue to do well and yes, you are all set for your next one!
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Grannax2, so glad you're on the mend & feeling better now! Yay for food! Yay for daughters! Yay for good meds!
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Bev that stinks to have them have not known how to read the ablation..that same thing happened to me after my first scan after Cryo was done. Then Dr. G at Hopkins looked at it and said its all good. I felt such relief.
Well ladies I am holding off on the Y90....my mom is at home in hospice care right now. I don't want to get into much about that but she has lived a VERY full life 81 years....her body is just giving out between her 6 years of Pancreatitis and some other ailments shes withering away...her mind however is another story..that is still very much all there.
Anyway now is just not a good time for me to undertake that procedure so I spoke to my MO and she had no problem holding off and said we can re-visit that again.
I also asked if we can reduce chemo from 2 weeks on 1 off to 2 weeks on 2 weeks off...I am having a bit of fatigue and chemo can be cumlative so yea...Also I am having some muscle weakness at times in the legs not often...but they get fatigued...and I am now hearing that can be a side effect of my chemo its not a common one ...but is and can be one. >>however I forgot to tell her that at the appt. yesterday so I messaged it to her this morning...
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BevJen, I was told by my IR that any scan (CT or MRI) should not be done before 6 weeks after the ablation since it takes that much time for the area to heal completely. So my CT scan has been scheduled for 2nd Dec. I still have some tenderness in the area under my ribs.
You are right, MO doesn't see the images but go by the report. Thankfully the IR will know what exactly the images are showing. Hopefully your current treatment will reduce the other lesions.
Grannax, sorry to know you had such a hard time with ablation. Hopefully the next one will be easier. It is so nice to have a daughter close by and who cares about you.
Moth how are you doing on Tecentriq/Abraxane combo? Most likely this is the same combo I may start up on.
Nicole, I talked to the NP if Halaven was an option for me. She said since I have been heavily treated (11 lines of chemo), Halaven may not work for me. So my MO is taking the conservative approach of immunotherapy/Abraxane.
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S3K5, I've been on tecentriq + taxol so far but I'm probably switching to tecentriq + abraxane .. will find out tomorrow. The immunotherapy has been fine. It's caused fluctuating glucose and thyroid levels (someone on this board had her thyroid wiped out with it so this is something they monitor closely) but nothing really concerning in my case; they just watch it. I know someone on twitter who over time on tecentriq + taxol developed very bad rashes which are persistent and itchy and not responding to normal treatments & I think she will be coming off this therapy now. I have some intermittent rashes appearing but mine have not been that troublesome, though they definitely are slowly increasing in size & locations. There was study reporting that in pts who had rashes, they tended to have better outcomes regarding their tumors so it might be a bit of a proxy for activation of the immune system which made me happy to read (otoh I had a lung progression on this treatment so who knows...)
Other than the rashes, I'd say my treatment symptoms are all related to the chemo & filgrastim, not the immunotherapy. I've found it generally easy peasy. Doing it with abraxane means a shorter time in the chair as no pre-meds required...
Nicole, oh sorry about your mama. That's hard.
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Grannax – I've been watching for a report from you and am very happy to hear that you are feeling better. I'm glad that you found something to help with the muscle spasms.
BevJen – It's irritating that the radiologist does not know how to read a post-ablation liver MRI. After my first microwave ablation, the treated tumor showed up larger on CT scan. I completely understand your disappointment with the scan report, but I truly believe that your IR will be able to make a better assessment. My IR normally waits 3 months for a follow-up scan. I had an earlier scan because my clinical trial requires 6 week CT scans. Hugs!
S3K5 – I hope that your Dec 2 scan will show that the microwave ablation was very successful. My first scan post 2nd microwave ablation will be Nov 25th… I didn't know that Abraxane/Tecentriq was available for ER+ breast cancer. Will you be getting it off label? Have you been on Abraxane and/or Taxol before?
NicoleRod – I'm so sorry about your mother. Given that your liver tumors are responding very well to Halaven, I would be comfortable delaying Y90. I don't know about getting Halaven less frequently… it's always a hard tradeoff between side effects and potential decrease in efficacy. I wish you quality time with your mom.
Hugs and best wishes t all! Theresa
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so much happening!! I get my results of the CDK 2/4/6 trial on Dec 2.
Grannax –glad you are better and on the other side of yucks!BevJen – I get your frustration. My RO warned me after SBRT that the scans interpretation would not reflect the true condition of the tumor and a 6 month scan for my procedure tells the most.
Teresa & S3K5 – hopeful for a good reports
NicoleRod – so hard to have your mama suffering. Your Y-90 Tx will be there when you are ready.
MOTH- glad you are mostly tolerating the immunotherapy. Funny that rashes are a good sign
Pamela23- Gem/Carb is on my list to try but I have had 5 treatments so far. I echo others. Is there some reason your doc passed over typical 1st and 2nd line recommendations for er/pr+ her2- ?
1)CDK 4/6 with AI or Faslodex (esr1 mutation)
2)Afinitor with AI or Faslodex (esr1 mutation)FYI- I read a poll that included my doctor and other researchers what would they recommend next when a person fails a cdk 4/6 and most all said Afinitor plus AI
Hoping everyone here enjoys their holiday next week.
Dee
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Ladies..thank you
Dee...very interesting about the Afinitor...bc thats what my MO was gonna try when my treatment fails...(or Verzenio)
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It may be the case that Pamela’s doctor has prescribed chemo Instead of hormonal + targeted therapy because of the “visceral crisis” scenario that moth mentions. Upon mbc diagnosis I had to start with Taxol, then maintain with Ibrance + letrozole after that. Still interested in the particular chemo choice and wondering if there is a somatic or germline BRCA mutation that would indicate using a -platin.
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Nicole, I'm holding you and your mom in my heart and wishing for you comfort and peace.
Grannax, I'm so happy to hear that you are feeling better! Take it easy, though.
Katty
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Yep, I'm on day 9 post MW left lobe. On Tuesday I will have the lipiodol procedure which did not hurt at all last time. Then on December 2 the right lobe MW.
I still feel swollen but nothing is really painful right now. I certainly do not have normal energy yet. . Still weak and shaky. I think that's to be expected after being mostly in bed for seven days. Yesterday, eating was not as fun as the day before. So I guess I'll have up and down days to expect as I recover.
The next one I need to recover faster. My family is planning an early Christmas/birthday weekend for me on Dec 5 and 6. With my grandchildren. Yay. Everyone is getting tested and the kids are doing school remotely just for me. I think that's the sweetest thing.
At least if the postablation syndrome happens again, I will know what it is and it won't be as scary. 💞
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Dee- where did you read the poll? Do you have a link?
Grannax- happy you have turned the corner!
Nicole - prayers for you and your Mom! It’s hard taking care of ourselves and then there are family and friends who have their own concerns and need us too.
Lots of scans coming - good luck everyone!! 🙏🙏
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