How are people with liver mets doing?
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I’m wondering how Grannax is doing too. I hope she feels good enough to checkin soon.
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Erubulin quit working for me after 5 cycles, maybe 6. I've lost count. The doctor is putting me on GemZar beginning Thursday. So far, I have handled all my chemo well: Taxol, Ibrance, Erubulin. Sadly most only work for four months or so, then on to the next. Frustrating. I have a lot of lymph node involvement and three small lesions on my liver. Anyone try something that will actually kill the cancer ... and last longer than 4 months?
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Have you thought about local liver treatment? You state that you have 3 small lesions on your liver. The local liver treatment wouldn't help the lymph node involvement but could help with the liver lesions. Another place to look on the boards is this:
Liver mets: resection, ablation, SBRT, Y-90, anything else?
Also, have you had your mets re-biopsied or talked about genomic testing with your doc?
These are not "solutions" per se but they are more tools in the toolbox.
Hope this helps.
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I'm hoping Grannax is having so much fun with her family visit that she hasn't had time to post.
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vbishop.... after how many cycles / or months did you scan on the Erubulin? When you scanned and it was working how did you know it stopped did you have a 2nd set of scans? When it was working did everything shrink or just stay stable?
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NicoleRod , it is good know that Doxil is tolerable, though I am concerned about this chemo working for me.
BevJen, my TM went in the wrong direction soon after ablation (my IR had warned me about this). So maybe your TMs are reacting to the procedure? How often do you get blood work? My MO orders this every month but doesn't pay much attention to the TM numbers. She focuses more on Liver panel. I hope Ibrance/Faslodex works for you for a long time. I was on this combo for 18 months, before bone mets showed progression on a scan.
vbishop, I was on Gemzar for 4 months. It was very tolerable and I was able to drive to work everyday. Hope this works for you. Yes, it is frustrating that some chemo works only for 3-4 months, which has been happening to me since my mets in liver started. Gemzar will be your 5th line of chemo? If so, you have few more chemo options left. As Bevjen suggested above, you could talk to your MO about local treatments for your liver lesions. Good luck with your treatment.
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S3K5,
Thanks for that note about the TMs. My IR doesn't get too much into TMs, nor does my MO. But the increase in number worries me. However, my liver function numbers are all good, with the exception of my alkaline phosphatase number being 2 points above normal -- which DID happen when I had my first ablation in 2019 -- my ALP numbers actually shot up a bit for a while, until, I am assuming, the ablated area started to settle down.
Repeat ablation this coming Friday. Ugh. Just want to get it over with. I am gonna lose it if there's another mess-up. However, if I'm not mistaken, this time I think the IR said they were doing it with CT and sonogram, which is how they did my first one -- which apparently hit the mark well.
My MO does routine TMs, along with other lab work, every month like clockwork. I go in for the lab work and the faslodex shots at the same time, at the end of my Ibrance cycle.
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Dear Bev, I have a good feeling for this Friday, a turning point is coming. This time they will hit it even better. And do not pay attention to ALP/AST/ALT temporary increases. If you had a procedure, they will shoot up and then will come down for sure. When we once went to liver-specialist, she said GGT is much more sensitive for liver damage than AST/ALT/ALP, so if GGT is in order, liver is well. Saulius
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Dear Saulius,
Thank you. You always try to be uplifting for all of us on here, and we do appreciate it! Hope all is well with you, your wife, and your son.
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Agreed BevJen and Salius!
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I started Erubulin the first week in JuIy; we noticed tumor markers starting to climb in early October. I had tumor marker tests after every cycle ... and they started to go up. I have PETs every three months, earlier if blood results warrant. For me, every time tumor markers go up is an indication that my chemo has quit working. When Taxol quit working, we had to start from square one. All progress had been lost. So when they started to climb, we watched to see if they would continue to rise. They went up the next test as well. We moved the scheduled PET up two weeks ... sure enough, new lymph node involvement; liver is stable. I love that my doctor doesn't play around.
Once on Erubulin, tumor markers started to go down, slowly, right away. They were back in normal range in September. We were happy. Cancer sucks!!
You can check out my blog for more details: test results, PET results, etc.
Whoops! I Did It Again = My journey with metastatic breast cancer
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Dear Karen, dear Bev, thank you, we do fine so far, I wrote about this a week ago. Scans on the 28th of December and 11th of January for us... It is you guys who inspire me. Seeing how you all fight and, actually, push this world and field of cancer research forward is a big big honor for me. Future generations will have to be forever thankful for what you have done for them. But first things first. And first we have to live many years to be able to tell them the whole story. I believe you will. Just look at this (I found it this morning: https://www.fiercebiotech.com/biotech/j-j-legend-s-anti-bcma-car-t-keeps-it-consistent-phase-2-as-fda-filing-looms ) - it is incredible what 2nd generation of CAR-Ts can do, and this is just one subcutaneous shot... Science is slowly winning and it will win in the end. Hopefully sooner than later. Lot's of hugs to everyone, Saulius
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vbishop...so you had a scan when? SEPT?? and that showed New lymph involvement? But showed your liver stable...so tumors in your liver never shrunk on Halaven they only stayed stable correct? Also what are the size of liver tumors?
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S3K5 -
My liver is relatively stable right now: two show lower metabolic rate, one shows slight increase. I will talk to my doctor about treating the liver separately and see what he says.
Thanks for the suggestion.
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Nicole - I have never been on Halaven. The size of the tumors on my liver have almost always been stable; it's the metabolic activity that is going down, except this last PET showed one lesion with a slightly elevated metabolic activity.
Update: I didn't fully answer your question. My latest scan was on 12/3; previous scan was on 10/9. The new lymph nodes showed up on 12/3.
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vbishop, Erubulin is the generic name for Halaven. Here is the link for description of this drug:
http://chemocare.com/chemotherapy/drug-info/eribul...
My MO had referred me to the IR for microwave ablation of one lesion that had a higher metabolic activity than the rest. The IR did a biopsy prior to ablation. The analysis of the biopsied liver lesion showed that it was triple negative (mutated from HR+ve), so I will be starting a different chemo this week (Doxil).
Hope you can get a local treatment for the liver, specially on the one lesion that is showing higher activity. I don't know if you will have to delay your chemo to get this done. I did not have to stop taking Piqray before or after the ablation. Good luck with everything. Please keep u posted.
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S3K5 - Piqray is an option for me. You take both now? I will ask about biopsy on the liver. We had one schedule a while back, but it was so small and so close to the artery that they were concerned about uncontrolled bleeding and would require at least a 2-day stay in the hospital. We elected not to go forward and biopsy later. I will ask is "later" is now. I would be curious to know if my cancer has mutated; wouldn't surprise me - a real sneaky sucker.
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vbishop...Erubilin is Halaven...generic name...
Ok...so I understand now..your tumors never actually shrunk on it..they just stayed the same size (stable) also..when I asked you the size I meant actual size..1.0cm 2.0 cm. etc...
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Moth, there seems to be little information about ascites on these boards and most of it is depressing. Through my experience, I have learned of others, in addition to Husband’s wife, that have successfully turned things around with ascites. A few people have reached out to me. What I have learned is that the ascites seems to take a bit longer to go away and doesn’t clear up right when treatment starts working. There can be other complications such as portal hypertension, some scarring in the liver and/or thrombosis which further complicate the ascites equation. The more someone’s team of doctors are on top of the whole situation, the better prognosis. One needs more than just an MO once ascites hits. One needs a hepatologist or gastroenterologist managing the care as well.
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Thank you all for the helpful responses. I have not had much access to my computer this week -- my daughter is using it for virtual school since hers broke.
Sitting around today waiting for my onc to call and explain the results of my follow-up PET. I read it in advance, and the first thing I saw was "liver failure" which naturally has me all freaked out. (and incompatible with my improving liver enzymes) -- my tumor markers have been normal this whole time which renders them useless.B-A-P, I'm so sorry to hear about your progression. It's awful just waiting without a plan. I hope you get some answers soon as to what your next steps might be.
AlabamaDee, thank you for sharing that article. It's possible my onc actually knows what she's doing and doesn't need me consulting Dr. Google along the way. Ha.
BevJen, thanks for suggesting the Foundation one. They DID send the samples off for testing and didn't find much in the way of match ups with targeted therapies. There is a possible benefit from CdK4/6 (or something like that). I also have a BRCA-2 VUS, but that didn't show up in their workup.
I did end up just scheduling a follow-up consult with the onc I saw at U of Michigan. They're the gold started in this area. I had a follow up PET today to see how the chemo's working -- waiting for my onc here to call me to explain the results. Fingers crossed.
NicoleRod, I'm glad to hear Eribulin is working well for you! I'd love something that beat this into submission quickly and helped my liver get it together. I'm hoping that will help with the ascites.
VBishop, I'm sorry to hear Eribulin stopped working for you so quickly. Fortunately, they tell me there are "lots of things to try" --- it would just be nice if they would keep working for a while.
S3K5, it is interesting that the ER/PR status can change over time. In my first round the PR was only about 20% anyway. but good to know.
Husband11, thanks for telling me about your wife's experience with her ascites. #lifegoals. I'm already sick of feeling 6 months pregnant, and it's only been a few weeks.
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Anyone heard of not being able to walk because of neuropathy? My MO is stopping my taxol after 4 months in case I get neuropathy because he said it could effect my ability to walk. I don’t have neuropathy currently andTaxol has been shrinking my tumors. Thanks!
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Thanks Lu77
D37...I never heard of a MO stopping therapy that is working because they say there is a chance you "might" develop a certain side effect?? hrmmm I don't know how I would feel about that? Why not ask him to just dose reduce, I mean, since it is working on your cancer and you are not having any side effects particularly the one he mentioned...?
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D37,
Hmm, I've been on Taxol since mid-September. I had some neuropathy from previous treatment of Xeloda, but it had gotten worse in the past few weeks. My MO''s response was to change my infusion schedule from weekly to 3 weeks on/1week off. My first scan since starting Taxol will be in early Jan.
I don't understand why he is taking you off a drug that has so far been effective when you're not showing any signs of neuropathy??? It's my understanding that some people never get it and some people can prevent / manage it by icing hands and feet during the infusion. I have stage 2 neuropathy but I can walk, drive, button my buttons etc.
I hope that your MO is open to some further discussion , best of luck!
Katty
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I can fill in a few more details about a particular type of ascites, that arising from impairment of blood flow through the liver. The heart pumps blood through the small intestines, which pick up food and drugs, and that venous blood enters the liver for processing. The liver is also fed by arteries, that feed the liver with oxygen enriched blood from the lungs. So the liver is fed by both arteries and veins, unlike any other organ in the human body.
If through clotting, constriction of hepatic veins (say a tumor inside the liver presses against a large blood vessel), or impairment of the flow through the smaller blood vessels within the liver, the resistance of the liver to blood flow through it increases, the result is hepatic hypertension. The blood being pumped from the heart, through the intestines, draining through the liver, becomes hyper-pressurized, and gets backed up. This can result in ascites (fluid accumulation), varices (enlargement of veins) and enlargement of organs like the spleen. The varices can be anywhere connected to the intestinal tract, and includes umbilical veins (that normally atrophy after birth) and esophageal veins. These veins can rupture and cause serious bleeding. A regular scoping of the esophagus should be performed to spot and treat (typically banding) of any varices to prevent serious bleeding. The enlargement of the spleen is typically permanent, and results in altered future blood counts, as blood cells like platelets are stored in the spleen, and with a larger spleen, the platelet count will be artificially lowered.
If the tumor pressing on the blood vessel shrinks, clots dissolves (not as likely), accommodation through enlargement of alternative pathways through the liver develop, or whatever is blocking flow through the liver abates, the condition can reverse. If it does not reverse, a stent can be installed to bypass blood through the liver without processing (not a desirable first option as this changes metabolism of drugs). As well, drugs to prevent further clotting, and diuretics can be used to reduce the ascites or the worsening of it.
Paracentesis, draining by using a needle can be done to relieve accumulation of fluid. Ultrasound is the best way to determine the best spot to drain from. Fluid cannot typically be all removed by paracentesis, as it forms pockets, often on both sides of the abdomen. It is up to the skill of the doctor to determine the best spot to drain from, and they don't like to poke another hole and go in a second time if they can't get it all.
A specialist who works with kidney patients and installs dialysis lines is the best person to get to install a semi permanent drain line. These drain lines are far more effective at draining more fluid than paracentesis. An adult at home is needed to assist with the home draining. They can be trained in a brief session with the Doctor who installed the line. You just have to follow the steps and it is safe and very low risk for infection. The person who has the drain line can no longer take showers or swim as long as the line is installed.
A few key points:
1. Ultrasound or MRI are necessary to properly diagnose ascites. Tapping on the abdomen, while taught to Doctors, is highly inaccurate;
2. Treatment through drainage produces relief;
3. Drainage can be by paracentesis (temporary insertion of a needle similar to an IV) or through installation of a semi-permanent line;
4. Diuretics (typically a combination of 2, to offset side effects) are helpful;
5. Anti coagulants may be helpful if clotting is the suspected cause (possibly only preventative of progression and not as treatment);
6. Regular endoscopy is necessary to spot and treat potentially life threatening varices that can bleed internally. If you vomit blood or have dark tarry stools, immediately seek help. You could bleed to death or have heart failure from loss of blood.
I'm not a Doctor, but the above is some of what I learned about this particular type of ascites.
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@NicoleRod, totally valid point. I think the reason she ran the follow-up scan so early is because I HAVE developed ascites really suddenly and dramatically, because despite my liver numbers going down, the ascites just came out of nowhere. She wants to see whether there's any positive effect from this drug and if so I doubt she will change it at this point. I have chemo (regular drugs) at 8:15AM tomorrow, so I'm still hoping to hear from her this evening. Fingers crossed.
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Lu77, you are in my prayers. You will hopefully have a reversal of the ascites just like my wife did. She believes the diuretics helped relieve the symptoms.
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Lu77,
I hope this all works out for you.
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Nicole - On my last PET, they focused on metabolic rate and did not mention size, except for the three new lymph nodes. That reminds me to ask about that. Thanks!!
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Thanks BevJen and Husband11. Pleased to report that I got a call from my MO this evening and we're continuing with the current treatment. While the tumors haven't really started to shrink, they are considerably lower in density and some lymph nodes are resolved. She did order another paracentesis and prescribe a diuretic. So, yay. That's my good news for the day.
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Lu, That sounds like very good news!
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