How are people with liver mets doing?
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Babs I was allowed to stay on my TX during my procedures. I'm on Ibrance and Femara. So, I got the benefit of both systematic and local treatment. If you are on Ibrance, I wonder why your MO won't consider y90 now.
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Hi Buras54 - I had an office in NOLA for many years and know Slidell pretty well too. I miss eating at Mothers and Commander's Palace. :)FYI I start Abraxane on Tuesday for 5-6 mos if we get good numbers. I have a cautionary tale about Afinitor as does Rpoole. I wish I had gone straight to Xeloda and not wasted 2 mos on something that made me worse. I hope this is not the case for you, please hop on the Afinitor thread for more info. My suggestion is to monitor your CA 27.29 numbers carefully and if they are accelerating on Afinitor, please discuss choices with your onc.
(()) Claire in muggy hot CA
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Hi Lalady1, I just want to go to Xeloda but he said that would be a last resort because of the bad effects however I do very well with my Meds. After 4 iv chemo and ibrance I only missed three days of work. I feel fortunate and blessed that in 4 1/2 years my cancer hasn't spread past my liver. I did four rounds of the red devil and four of taxotere and in remission for 1year. then I had ablation on one tumor and in six months 3 more tumors popped out. Then I did havalin, (spelled wrong) And in six months it came back and then I did abraxane and in the middle of that I had a return to my breast so I stopped chemo for 35 rounds of radiation and went back on chemo. Waited 6 months to do pet and of course it came back and more aggressive. Then 16 months on ibrance and when it quit working the cancer went nuts. Then two months of exempla did an MRI and it wasn't working. Put me on navalbine every week for 9 weeks and MRI and it didn't work so here we are
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Buras54, xeloda has great potential to work on liver mets. My wife's liver mets were extensive, and the xeloda really hammered them down.
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Grannax - Awsome results!
I'm back from a short hospital stay. Liver biopsy was done yesterday, they took five tissue samples. Pathology results will take about 2 weeks. Continuing on Taxol until results are in.
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Linda, glad you are back from your biopsy, how was it? Mine is scheduled for Monday. They are doing mine with ultrasound instead of CT. Any advice
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Kandy - responded on your thread
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I finally got brave enough to read my PET report. Sure enough, I was not dreaming. Here are some of my favorite phrases: marked interval improvement, metabolic activity is no longer focal or greater than background, excellent response, complete response to interval therapy ( y90 radioembolization ). I'm grateful that my MO recommended this Dr. And procedure for me, otherwise I would not have known to ask about it.
In regard to chest and lung mets: partial response to therapy (Ibrance/femara). I'm happy about that, too. However, I was hoping to read that pleural effusion was gone...I guess that explains SOB. I will stay on IF because I have responded to 7 months of therapy.
I hope that any of you who want the y90 will contact an IR to see if you are a candidate for it.
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Hi! Newly Dx'ed with liver mets here. Still trying to figure it all out. I have had CT, MRI and PET so far. Results varied somewhat but showed diffuse lesions in liver. Evidently there are 2 or 3 larger lesions and several smaller ones scattered throughout the liver. Biopsy scheduled for Thursday. Assuming it will be the same type as my original Dx, but we'll see.
Re chemo: There seem to be a lot of different therapies.... MO wants to start Tx as soon as results are back. Someone above mentioned starting Tx before biopsy results were back. What have others done?
Grannax mentioned radioembolization which I have read about. Most of the discussion seems to be about chemo. Has anyone else had surgical or radiation therapy? My impression from the studies I have read is that there are good outcomes with surgical/radiation Tx.
I would like to/am planning to get a 2nd opinion on the whole range of tx options, just for peace of mind.
Like all of us, I'm sure, I am trying to figure out a lot of logistical "stuff" ... like I've read a little about applying for Medicare (I am not age-eligible), navigating FMLA and disability coverage, etc. I will be checking in with local support resources, and I have found a variety of websites, but does anyone have suggestions.... are there books, etc that you have found particularly helpful?
So to sum up - Would welcome feedback on:
1) Wondering what to expect in terms of chemotherapeutic regimens....
2) Has anyone else had surgical or radiation therapy?
3) Are there books, other resources, re planning/logistics that you have found helpful?
Thanks much!
PS: Grannax: love your "excellent response" post! very encouraging!
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Lumpie In regard to starting TX before BX results are in, even though you already have receptor studies on your original tumor, I would wait for BX studies to come back on liver. The receptor s could have changed or mutated, then you might have different or better options for TX. And, if you are going to get a second opinion, they will want pathology to confirm their opinion for TX.
All of my chemotherapy was done so long ago, I don't have any advice on that. I'm old enough to be on Medicare so no knowledge there either. But, after you have both opinions on TX and or local treatment, I'd be interested to hear what the recommended for you.
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Thanks, Grannax! I will post an update when I have a Tx plan.
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Lumpie I am also very recently diagnosed, got my biopsy results last weekend startedtreatment Thursday with Ibrance and Faslodex. I found this group shortly after my MRI and it's been a great help in learning and support . I went ahead and started treatment but still want to pursue a second opinion, in particular to find out about options beyond hormone and chemo.
Grannax it is so exciting to read your results with Y-90. I'll definitely want to ask about it as I move forward in exploring treatments.
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I know it's temporary til the ibrance/ Femara kicks in but have any of you taken pain meds for enlarged liver?? Mine grew quite a bit and it's so uncomfortable. I have very minor ascites in my pelvis, not enough to tap, and feel pregnant.
Currently taking dex and some Motrin but curious to see what other non-narcotics may help.
Thanks
Maria
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I've taken medical cannabis, high cbd's so I don't feel baked.
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whacky question but... Has anyone ever had a hard lymph node that later went away/softened/resolved? I found what seemed to be one under my jaw bone near ear. I didnt panic but kept checking for a couple of days to be sure it seemed to be the real deal. I resigned myself to it being the real thing .... And a couple of days later it disappeared! My skin did not have the external appearance of a bug bite or any sort of trauma. So strange....
Thx for feedback.
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Grannax gr8 outcome, for real!
Maria i wonder if it's not ascites, it could have changed, you looking pregnant and painful, maybe you could call MO and try to figure it out. Hope you feel better.
Lumpie, it does make sense to wait for the results. You could ask them how long it will take, it should not be more than 2 weeks.I've learned, the hard way, that sometimes it's worth to just wait. It's crazy and worrisome, but...
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Grannax gr8 outcome, for real!
Maria i wonder if it's not ascites, it could have changed, you looking pregnant and painful, maybe you could call MO and try to figure it out. Hope you feel better.
Lumpie, it does make sense to wait for the results. You could ask them how long it will take, it should not be more than 2 weeks.I've learned, the hard way, that sometimes it's worth to just wait. It's crazy and worrisome, but...
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Lumpie, I have had lymph nodes come and go in the area you mention, around your jaw. Any sort of throat, ear or other infection or mouth sore could cause those to flair up. I hope that is all you are dealing with!
Lita, did you take medical cannabis for side effects or to actually treat the cancer? There seems to be so much promise in CDB oil for the treatment of breast cancer. My state recently approved medical marijuana and many are jumping to get into the business now. I was reading today about upcoming clinical studies for treatment of breast cancer from a drug company very close to me (a subsidiary of a major drug company).
Grannax, so awesome how well the Y90 is working. I have begun floating the procedure with my MO and bring up your success story. He is thinking it would be something for further down the road for me though.
Maria, I have taken ibuprofen for liver pain, and on occasion, tramadol. Tramadol may be worth looking into to add to the ibuprofen. I didn't know about it until I asked in the hospital after surgery if they had anything that wasn't narcotic. It works well if you need something more than over-the-counter but are not looking to take opiates. No loopy, drugged up feeling.
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JFL, I take medical cannabis for pain and SEs.
I'm letting Xeloda do the heavy lifting for Tx for now.
CBD oil can be very expensive for cancer Tx, but it has shown promise. BC people need to watch the THC because certain forms can stimulate growth...gotta review my notes.
MMJ really helps with pain, nausea, anxiety and insomnia.
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HI Husband11: I really want to go straight to Xeloda but he wants to try this first. I'm doing blood work every and if my bilirubin go up and my liver functions I telling him I want off. I have an appt. next week with him so I will speak to him about getting off this afinitor. I hate wasting 2 months and they continue to grow. My cancer comes back more aggressive after every chemo I do. Thanks for your advice. lalady1 told me the same thing so I will talk to him about it.
Thank You
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Hi Grannax2: I have a friend that did it with the chemo beads, it worked on the little one but having trouble with keeping the 4 big ones down. I was thinking about it but it is a the last thing I will do. I will have to change doctors and go to another hospital about 1 hour away from the house. I'm still working so it makes it hard but my life is worth it and I want to live so I will get it a shot if afinitor or zeloda doesn't work. Were you very sick from it. It' 5:00pm I'm leaving work. Night everyone,
Thanks
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Bursa54 The first week was pretty hard but at 2 weeks out I well enough to drive 3 hours to see my Granddaughter. Day to day details are on the liver mets local treatment thread.
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I'm so glad that you did well Grannax2. I will talk to my onc next week and I'm do a pet scan. I will keep everyone updated. For the first time I'm very concerned. I hope you keep get better Grannax2.
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Hi, Everyone. I need to read and catch up and respond, but for now I am just popping in to say that my TMs are now back in normal range!!!
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yay Shetland!
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Shetland- so happy to hear that!
Babs0 -
Whoo-hoo! That is happy news, Shetland!
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congratulations shetland!
>Z<
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As a liver mets newbie, I have a question: has anyone else had aggressively weird liver activity? Mine has felt uncomfortable for a long time but a month or so before Dx, I thought I had my cranky gallbladder back (removed 2014). It was banging and popping like an old boiler. Cancer docs totally dismissed it. A urologist ordered the CT scan to look at kidney based on microscopic hematuria (bless him!) - or there is no telling how long it would have gone un-Dx'ed. Crazy how these things evolve. Anyway, just curious about whether this is a symptom that is common? Thanks.
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Congrats, Shetland! Xeloda is such an effective medication. I hope it works for many years more.
Lumpie, your liver symptoms sound within the normal spectrum. I have had liver pain (both when mets are growing and dying) and occasionally some odd twitches.
I met with MO today to finalize the new plan following the Afinitor failure. We settled on Abraxane, which I will start on Friday. I am actually looking forward to it because my liver is starting to feel uncomfortable. I find myself sitting in meetings at work, feeling so uncomfortable, I can't stop moving around in my chair. I will be attempting to keep my hair using the Dignicap scalp cooling system at my cancer center. Liver biopsy is scheduled for next week. MO plans to send for genetic testing to Foundation One's competitor, Caris, as he thinks it will have a better chance at insurance approval because I already had an F1 test but have not had this one
I hope everyone else on this thread is having a good week!
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