How are people with liver mets doing?
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Just saying hello to everyone on this thread. I am surprised at how quickly the liver mets thread slowed down. I used to have trouble keeping up with all the posts. I miss our fellow liver metsters who are no longer posting. It has been a rough few months with losses with each harder to take than the last. It is understandable so many are taking a break from the boards.
Hugs to all.
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Just got done at Dr my NP is concerned my ALKPHOS is at 301,*AST is at 113 ANDALT is at 125, they ran tumor markers but I'm freaking out, I can't have failed another chemo, I will know more next week, and maybe we will stay the path we are on, we have a vacation planned for end of September I really want to be feeling good for, but I'm feeling good now.....
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JFL. I've noticed and missed hearing from so many here, too. I know Z is taking a break but still miss seeing her updates. Glad you're doing well.
Keetmom That's never happened to me but I know I would be freaking out. Why do you have to wait till next week? I hate waiting......but I'll be praying for you as you wait.
I'm doing good except for my worst sinus infection since I started Ibrance. I've had numerous SI for the past 18 months. For some odd reason they are an SE for me. I just waited too long to start antibiotics this time, I finally started today.
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Grannax, I have an appointment next Thursday, we checked tumor markers today and will go from there, said unless there is a plan I don't want to know until we come in and can talk in person.
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Keetmom: So sorry to hear you have worries from your liver markers. I hate this uncertainty we live in. We will all be in your pocket while you wait for your appointment. Are you on Xeloda? I found that so hard to tolerate.
How is your bilirubin? Mine spiked in April alongside my other liver markers. Good to hear you are feeling well - I was feeling rotten and got very jaundiced. I was put on Cisplatin and after only one round all my liver markers came down and I felt so much better. I tolerated Cisplatin well - I'm tired as most chemo seem to make me and it has affected my hearing a little. Now, after 3 months and 4 rounds my markers are back well into normal range. I'm moving to Carboplatin for tomorrows chemo, which is not as hard to take as Cisplatin.
Sarah
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Did Z actually tell someone here that she was going to take a break? Or has she just disappeared without comment? I am growing more concerned.
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I don't post too much but wanted to check in… I've been reading to try to catch up on others posts a bit. Hope that others are having a good summer... at least as much as possible.
Following my recent MO visit, I wanted to ask what others experiences have been in terms of follow up imaging. I was diagnosed about a year ago. Fortunately, my response to treatment has been good and I was NEAD on my last scan – which is great! I am mets to liver only (and started out with a whole bunch of them!). MO is recommending alternating CT then PET, repeat, every 3-4 months as follow up imaging as long as there is no progression. Don't recall hearing about CT as routine follow up imaging but maybe I missed it. Just curious what others are doing for follow up imaging.
Thanks much – and be well!
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lulubee, Z posted on the abraxane thread a week or two ago and said she was feeling pretty good. Another member said they are connected via fitbit and that Z has been getting her steps in
so I think she's just taking a break from the boards hopefully.0 -
Lumpie. I get PET every 3 to 4 months. I think some docs prefer CT but I cannot have one because of iodine allergy. They are cheaper too. Sounds like you're getting good follow up for NEAD. I'm not NEAD, yet. I still have active mets in lung and chest but my TX is still working. My liver mets are inactive post y90. I'll have my next PET in a month.
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SCWILLY, billirubin is normal, other things a bit high, im doing Carbo and Gem now, failed Xeloda horiball. Falled ibrance, failed taxol guess we will see.
Big thing i feel good most times
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Keetmom: Great to hear your Bilirubin is normal and you are feeling well, which shows your liver is working.
I went through Ibrance and Xeloda which both worked for a while and then stopped. I wasn't sorry to leave behind Xeloda - it was terrible for my hands and feet.
Best wishes for your treatment.
Sarah
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Muddling, thanks for answering about Z. That is a bit of relief. I hope she is just off enjoying her daughters before school starts up again.
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lumpie, i have CT every 3-4 months for liver mets. No change over last year, so I think that's good! Don't even know if they do PET here. What's the difference
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Lumpie: I always had CT scans which monitored the mets in my liver well. When in the Spring this year, in between scans, I had a flurry of quick growing mets that spread to a couple of areas in my bones. I moved to a PET scan which I understand is better for bone mets. I talked with my MO on what to do as a follow up and we agreed for me it was best to stick to another PET to have consistency to compare. (it showed great reduction in tumor load) I think a PET includes a CT scan, but doesn't have the contrast. I would be happy with either.
Sarah
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Hi all, just checking in!
My last PET showed improvements in my liver met, which was small to begin with, and my lung met (which they'd failed to mention before, so that was a surprise, but explained some things). My liver function numbers have been running just a little high, but my MO is not concerned about it at all. The frustrating thing is that the bone mets are going the opposite direction of the organ mets. So it's wait-and-see until my next PET to find out if they're just flaring, or if we need to change meds again. I've only been on Afinitor/Faslodex since April, so that's frustrating.
I don't know about you all, but I'd rather have something definite, good or bad, rather than "wait-and-see." I got the same indefinite answer from my mammo last week, too. They're fairly certain the changes in my left breast are calcification from surgery, but we'll do another one in 6 months to verify. Considering this was a 6 month mammo to verify changes noted at my December mammo, I'm less than comforted.
Oh well. I feel good, I look good enough that people are shocked when they learn I'm stage IV metastatic, I kept up with our 10 day cross-country family vacation to Colorado from Pennsylvania, my kids are fabulous, and I'm able to garden this year (we just brought in three 4-lb cabbages!!!), so I'm calling life a win right now.
Blessings to all!
Pincushion
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Minnie. The PET actually measures activity not growth. As long as you consistently get the same type, so that they can compare apples to apples, so to speak, you're good.
I think PET is fascinating. They actually inject you w radioactive tracer and glucose. Then an hour later the scan to see where the tracer lights up. In nontechnical terms, I tell people it shows how much the cancer is "eating". They call that uptake. Less uptake is good, more is bad. For example when I was DX 19 months ago, the uptake was bad. It showed 7 or higher in multiple tumors in my liver, chest and lung. My last PET showed 2 and 3's uptake in chest and lung. Each scan they are "eating" less and less. My liver mets are not "eating at all" called inactive since I had y90 one year ago.
Of course it's disconcerting that cancer eats sugar, which is technically not exactly correct. Ha
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Lumpie, I would NOT recommend alternating scans, as you will not be comparing apples to apples. Pick one or the other. I alternated once - and it burned me badly. I get PET-CT scans every 3 months but my MO has always tried to push me to do CT + bone scan because they are easier to get through insurance. I have fought him on this all along (and have never had an issue with insurance questioning or denying a PET). After several positive PET-CT scans where my liver mets had shrunken significantly and went 100% inactive, he had me do a CT instead of a PET-CT at the 3-month mark. It looked about the same as the prior CT portion of the PET-CT but by the next 3 month scan, there was a complete explosion and the worst my liver has ever been - 70% of my liver was mets with nearly the entire left lobe being mets. I suspect a PET-CT would have told me that the fire was starting to burn out of control. Before my liver mets grow (or shrink), the metabolic activity increases (or decreases). The PET-CT tells me when to start watching something closely and start thinking about the next treatment and when a medicine has shut down the activity in the mets before the lesions have had a chance to shrink. The PET-CT is always two steps ahead of the CT for me and gives me more meaningful data than the CT alone, especially for liver mets which live in a very nutrient-rich microenvironment and can grow very quickly. If I went off of CTs alone, I would have thought medications were failing when they were working and thought they were working when they were failing. However, everyone is different. Once you decide what is right for you, stick with one test.
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Since my diagnosis with mets in late 2015, I have always gotten CT scans, but once mets showed up in my liver as of April, my onc switched over to PET scans. For the one I had in June, he requested an iodine contrast, which isn't common for PET scans. The head of the Imaging Dept. - who also co-designed a new type of PET scan with superpowers that is only used here at MDA - said that his radiologists didn't need the contrast, but that some doctors could read the scans better with it. He wasn't being snarky, but I got the feeling he didn't exactly approve. That machine is his baby.
The PET is really interesting. You can also have uptake if you have inflammation, so I worried about my sciatica, but it didn't show up. In 2003, when I had a full-body PET after being diagnosed with bc the first time, they told me my feet lit up like Christmas trees. (I have arthritis in my feet). That scan took an entire hour during which I had to lie completely still. The PETs I've had this year have taken about 15 minutes. YAY!
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Thanks Grannax. Good to know the difference
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I know Z is currently prioritizing her time and not posting, but I'm wondering if anyone has heard an update from her on her recent MRI? I'm hoping she received some good news.
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I am weighing in on the topic of scans. My previous MO preferred CT scans. I had 1 PET at diagnosis and he said I didn't need another. We did CT's every 3 months. My new MO said she sometimes does CT alternating with PET every 3 months--one time CT the next time PET. But she said with my case we could stick with CT every 3 months. ???? my case??? My next visit I am going to ask her if we can do PET at my 1 year anniversary. I would think my insurance would cover 1 PET a year and we could compare last years at diagnosis, before meds, and now 1 year out with meds used. What do you all think?? Also, I had also heard that with PET it lights up with inflammation so how do they tell the difference of arthritis vs bone cancer? I have rheumatoid arthritis so maybe that is why PET would not work for me--"my case". Who knows. Sometimes I wonder if the MO's even know.
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Candy, I was told that they could differentiate the arthritis or sciatica inflammation from cancer progression by the amount of uptake, but I don't know if that's the case in all instances. I always mention if I'm having particular trouble with a sciatica flare up. I just started having PETs instead of CTs a few months ago (although I did have a PET way back in 2003). Ask your MO to explain exactly why she thinks that continuing with CTs are best for you - whether it's an insurance issue or if inflammation from your RA would cause too many false reads on a PET. I really like my onc, but sometimes it's hard to get specifics. Keep pushing until you find out what you need to know for your satisfaction. We already have too much uncertainly in our lives - oh baby!
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Candy, I don't know about how rheumatoid arthritis impacts the interpretation of a PET-CT scan but that is a good question to ask you MO. With bone mets, I believe the radiologist needs to examine the CT portion of the PET-CT in conjunction with the PET portion to determine whether the lesions that light up appear lytic (weaker and less dense than bone tissue) or blastic (more dense and more brittle than bone tissue). It is possible a radiologist would be able to identify rheumatoid arthritis in the same way as it would likely look different than lytic or blastic lesions. I hope you can find some answers from your doctors. I agree that sometimes I wonder if the MOs even know!
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This thread had been a lifeline of support for me since my livers mets were discovered last year in July. I look at several but this was my primary resource.
Unfortunately my cancer took a dramatic turn over the past few weeks and I’ll be moving to a gastric focused thread as primarily for the future. For 11 months it looked like my Ibrance/Faslodex combo was working exceptionally well. On my June MRI my liver mets had pretty much disappeared. So I was pretty excited about great results and looking at travel plans.
Then I started having increasingly severe acid reflux problems and coincidentally found out I had breast cancer on colon polysy that were found in my June colonoscopy. The acid reflux over a 3 week period became so bad I could not tolerate even a liquid, mostly water, diet. After a couple of more quick tests, endoscopy and small bowel function, and several ER visits for hydration and consultation with my oncologist, last Sunday I was admitted for an urgent J and G feeding and drainage tube insertion because my stomach wasn’t emptying which is why I had so much acid. During the procedure the gastroenterologist said that the opening between my stomach and small bowel had pretty much closed up. My oncologist thought it was likely due to the cancer moving into my stomach and gastro system though nothing could be seen on the CT scans she had ordered earlier in the week. Yesterday my MO called me with pathology results. The biopsy from one part of my stomach did have cancer cells. She has ordered additional testing to get ER,PR and HER2 status before having a final treatment plan recommendation.
It’s been a roller coaster of emotions going in a very bad short time from thinking all was going well to finding myself leaving the hospital being fed through a feeding tube and looking at a future of a IV chemo (pills not an option because medication not being absorbed by stomach) and hoping the chemo works well enough to return my stomach to normal so I can eat again. I know several of you have been through these kind of situations and I admire everyone’s resilience.
Thanks to all for all your support over the past year. I’ll still be checking in to this discussion thread periodically. It’s a great group.0 -
Liwi, I'm so sorry. Being blindsided is just the worst. My thoughts are with you, and I hope that your upcoming treatment plan is not only tolerable, but highly effective. Peace and comfort to you and yours.
Katty
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Liwi-
I am so sorry for your news. May God be with you and yours.
This cancer is so sneaky and scary. It was not seen on CT scans? And the liver mets were better. Wow, makes me scared for myself. My latest scan shows "stable", but I (as several others have posted) have reflux. Mine is not so bad I cannot drink, but has worsened over the last several months. I think from meds I am on--Ibrance thread members talk about reflux often- and from my autoimmune problem Sjogrens, which causes a lot of GERD. But who really knows what is going on in our bodies. Until we end up in emergent situation, like you did.
Please keep in touch with us here in this thread.
My prayers are with you.
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Liwi, what a shock you must be going through. Thinking all is in control, and you got this, and then, bam, right in the gut.... (Couldn't resist).. I think that is the scary part of this disease. The not knowing where it will show up next and when. I have been through a lot, and your scenario scares me. But I also encourage you to hold your head high and deal with the emotional roller coaster ride you are on. You have made it this far and you can keep on keeping on. This is just a setback and between you and your medical team and mental health team you will manage. Make today the best day you can make it. Keep us posted.
Therese
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kiwi- I am sorry to hear that you have another battle coming. Know I am thinking of you. We are always here for you. I hope that you can find peace with your new treatment plan and that it beats the Cancer back.
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Celebrate Life, this Charles Addams cartoon is what came to mind when you mentioned roller coasters. I think it's a perfect illustration of what life is like for us, but that could just be my dark sense of humor talking! Without it, I'd never survive, that's for sure!
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Great cartoon Kattysmith
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