How are people with liver mets doing?
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Originally I had mets to bones only, but last month that all changed with mets to my liver now also. We tried to do a biopsy on the liver. I think I surprised the radiologist by being able to point to the lesion we were going to biopsy! It's not a bad pain, but I know it's there. The CT shows a lot of spots throughout both lobes. I have a desk job so I have to keep reminding myself (or the pain reminds me) not to lean against my desk - it hits right on the painful spot on my liver. I too have to eat small meals or I get very uncomfortable, and sitting in my recliner only makes it worse, putting my body in a *C* just puts too much pressure on my innards.
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(((((HUGS)))))) to you All!
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After 3 cycles off Taxotere, scans showed my tumors are stable. I enjoyed the significant reduction I got with each scan while on Taxotere, but I don't miss the se's. I hope I can stay on just the PH for a long time. In all, my tumors, which started out about 20 cm, have reduced around 80%, and I no longer have any pain. We're going to scan after 2 cycles this time instead of 3 to make sure tumors are still stable. If the PH fails, my onc has said that my next drug will be Kadcyla (Tdm1). I'm not eager to cross this current treatment off the list.
All the best to everyone. Hugs, Trish
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I'm sorry to hear about Spamgirl and OBXK. Phew. It just breaks my heart to lose another sister. May they rest in peace, free from the pain!
I was dx Stage IV in October 2009. I have been NED since May 2010. I took A/C and Taxol/Herp. I couldn't finish the Taxol because of neuropathy (which I still have), but this month, I am starting my 4th year of Herceptin. I have an awesome cardiologist, oncologist, dermatologist, neurologist, and every other ologist you can think of!
I wonder how long someone can stay on Herceptin?
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I have had liver mets since July, 2010. I have been Ned since feb, 2011, after doing taxotere and herceptin. I am now on Hercptin and perjeta .
Cafelovr, I have seen some women who have been on it for over 10 years.
Unfortunately, I am starting to get more side effects from the herceptin, so I only get 9-10 doses a year. I am afraid that I will have to reduce the number of doses even more if the se keep increasing.
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April ... thanks for the update. I knew about spamgirl, but not OBXX - I'm with you, I hate this disease.
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Lauriesh ... wow, NED from liver mets, amazing!!!! Were you on dose dense taxotere or weekly? How many tx did you have? This gives me hope, for sure; keep on plugging. Is the perjeta for only HER+ pt? How do you tolerate that? Any lingering s/e from the taxotere? I have some neuropathy from taxol, weekly, but the L-Glutamine I just started to take seems to be working and reducing it quickly. I'm very encouraged.
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Trish & Cafelovr ... wow, more good news. Cafelovr, do you believe it was the taxol that put you into NED? Were you on dose dense or weekly? I hear the A/C is a real difficult one, how long were you on that? Any cardiac problems? Trish, wow, what a reduction in the size of your tumors. Pls. keep us posted on the perjeta, I'm always looking to know what may be next and what to expect in terms of s/e. So it's tolerated, few s/e?
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I did 4 dose dense A/C; one every two weeks. Yes, it was a kick in the pants. Food tasted like crap, I was so tired, sick, and bald. Everything hurt. Couldn't sleep, became a beotch.
I got scans between each chemo regimen. After A/C, the tumors looked like "Swiss cheese". Onc's words, not mine...LOL. After 9 Taxols/Herceptin, I had intense neuropathy. I ended Taxol and was scanned. Tumors looked deflated and "shot up". and went into surgery in April, but I continued Herceptin.
After I healed from BMX, I was scanned prior to starting radiation. I was NED. I believe it was the Herceptin that did it for me. I still go every three weeks. I have a high risk cardiologist, follow a low sodium diet and try to stay active (yeah, right!). I get echos every two months. I take prophylactic BP medicine, and I will take a water pill if I eat anything too salty. I also take Tamoxifen and had a complete hysterectomy (name it, they took it!)
I am very blessed and lucky to have such a wonderful oncologist who saw Stage IV and didn't let me cry. I was having one of those pity parties, and told him all I wanted to do is see my DD graduate HS. He said I would see my grandchildren graduate. He said he would treat me the same way even if I was Stage III. (My breast tumor was 11+ cm.) Faith has gotten me through a lot of things. Friends and family are irreplaceable.
My cancer was so aggressive. I went from having two cysts drained and a mammogram/ultrasound in December, which didn't show anything, to having pain under my arm the following August. I was dx. Stage IV w/ an 11 cm tumor the following October. I have had a "complete pathological response" to treatment.
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Hi syrmom, I had 7 dose dense taxoteres . I have some lingering neuropathy in my toes and fingers, but not too bad.
Perjeta is for her2+, and has minimal side effects.
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SyrMom, Perjeta has few side effects, the main one being diarrhea that can be unpredictable. However, I can deal with it if it keeps the rumors stable. It could be much worse. My hair is even growing back since dropping Taxotere from the combo. Also, my blood counts don't go really low, anymore. As Laurish said, it is only for Her2+ rumors.
Laurish, what se's are you getting from Herceptin?
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I have pain, tingling and weakness in my legs. I also have fatigue for a few days after, which seems to have gotten worse after adding in perjeta.
Laurie
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My liver mets have disappeared again.
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Jac53... Wow! How many did you have and what treatment did you use?
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Well, once again, I'm full of hope ... thank you for sharing and updating. This is incredible! After 18 mo of progression I was considering quitting treatment. Because I have a daughter getting married next Summer & I wanted to be functional for Xmas when the rest of the family was going to be home, I decided to go ahead and at least try the weekly taxol. I'm so glad I did. I think now I was giving up too easily and you have all proven that to me!! Thank you.
Jac53 - what treatment knocked those buggers out for you?
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Navelbine this time & Taxotere the first time 3 years ago. Good luck.
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I was dx out of the gate in 2008 with TNBC with Mets to my liver and lungs there were several spots in my liver and my lungs were covered with nodules. I was allergic to Taxol so I was put on Abraxane, then AC, got my first NED scan that allowed me to go ahead and have my BMX then Radiation, Abraxane again even though I was still NED, then Exchange surgery. I have been off chemo for cancer since Oct 2009, summer of 2010 they thought cancer was back but they instead discovered my immune system came back onlne defective I had Sjogren's Syndrome my immune system is attacking healthy cells,
Won the first round with cancer, and get the crap kicked out of me by a stupid auto immune disorder, had to start a Chemo drug Methoxrate this pass June in hopes it gets the Sjogren's Under-control its not working or it is and the cancer is back......guess we will find out at the end of Jan.
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Jac - thanks for the info ... Navelbine was mentioned to me at one point, so when taxol stops being effective, maybe that would be the next one to try. I understand it's easily tolerated compared to some. (?)
Hydeskate ... what an amazing response, wow, all these years NED! Pls. keep us posted regarding the latest developments. Wishing you the very best and and a positive direction for your immune system. I can only imagine how frustrating this has been for you. Getting the beast under control only to have the immune system turn on you. I'll tell you, what we endure sometimes is unbelievable. Luckily, we have each other to understand. Hang in there.
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Hydeskate...you bring up a good point. How many ladies have had "weird" things happen to them because of a jacked-up immune system? I know I do. Arthritis, allergies, someone sneezes around me, and I get sick. I don't get colds, or I do, but they come in the form of a rash, or pink eye, or UTI. I'm 42 with the body of a 90-year old
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I'm discouraged. I just did two rounds of weekly taxol after AIs failed me twice. I got my scan results yesterday and taxol didn't work either. Existing mets got bigger and new ones popped up. I didn't have any symptoms from the mets, and no side effects I noticed from the AIs, so at this point the treatment is more disagreeable than the disease, which is tough, especially when it doesn't work. Oncologist recommends trying a different chemo.
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Curveball, I'm so sorry to hear you got disappointing scan results. I can certainly understand that you're discouraged. I'm glad that you didn't have symptoms, but I'm sure that made the results even more of a shock to hear. I hope your onc gets you on a chemo that works! Keep us posted.
Hugs, Trish
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Well, I had 8 good months with taxol and avastin but now it's over. I had 2 liver mets that shrunk from over 3cm each to below 1cm. My previous scan said stable. But last week's ct scan shows 1 met stayed the same, one doubled in size, and a new one formed. Rats.
Taking a few weeks off to plot a new course. I took tomoxifin for almost 5 years while these tumors in the liver and breast grew, which is prob why my oc started me on chemo not AIs? My clinical trial nurse is checking to see what's avaiable, my onc is looking at existing therapies, and I have a radiologist looking over my history and scans to see if Im a candidate for yttium-90 radiotherapy. I would rather have radiotherapy ablation, but don't think it is aproved for BC mets.
I'm thinking I should have the liver biopsied again to see if the type of tumor has changed. And I'm wondering if removing the tumors will keep me out of any promising clinical trials. Sometimes they want an acive spot to measure.
I'm also wondering if I shoud go to MD Anderson for a second opinion. It's not far for me, but do they take Medicaid patients? I do love my onc, but not as much as my life.
When this started in Dec '13 we thought I was stage II, then a ct scan showed the liver mets and I had just a few days to make treatment choices. Now I have a chance to be more a part in these decisions, and I know so much more thanks to all of you.
Please let me know what you think might help based on your knowledge and experience. Tell me what is most and least important, what questions to ask, extra tests I shuld try for. I am lucky that the chemo had little negative effect on me, and my body is still strong and can handle more treatment. My liver function is good, and my bloodwork looks almost normal.
I'm so glad to have you all at my back.
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Hang in there, you're still in the beginning with lots and lots of choices including the ability to go back to those AIs. I had been cruising along with diffuse liver mets and related cirrhosis until just recently when I was diagnosed with multiple brain mets. So now I finally worry because I'm battling 2 beasts. Prior to this I have been on several chemos and did well with all with little SEs and a good QOL. That is what I hope for you. It never hurts to get a 2nd opinion at MDA. It can be intimidating. What I found initially was that all protocols are fairly standard in the beginning with most patients. It's when things get more complex like with me now that they can be a good resource not only with their approach but resources to other specialists, techniques and clinical trials. Watch those clinical trials with your liver. Don't be a guinea pig especially when there are a lot of proven drugs still left.
Keep us posted. Hugs to you,
Katie
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Awe crud, I'm sorry to hear about the treatments now working. However, there is so many wonderful medicines out there. You just need to find what works for you! Saying a prayer for you beautiful ladies!
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Curveball, I'm with you sista.
I had 5.5 years of bone mets and then in Aug CT showed liver mets. Did 13 weeks of weekly Taxol and blood tests of liver functions showed numbers dropping until nearly back in normal range. CT in Nov showed new and larger mets so Taxol a bust for me. I had no symptoms either. Onc put me on FEC since I didn't have it as I was stage 4 from get go. Had two cycles and blood tests show more improvement in one liver function and worse in another. So onc says those tests obviously not helping to tell if FEC working yet. Next week I will do TMs as they usually are a good trend marker for me. My new onc doesn't do them as regularly as my old one so I don't have too many recent ones. But in Aug they were 2500, which is ridiculously high.
So I'm in waiting mode both for the TMs and then scans if TMs are bad. Jan is either going to be a relief or a sucky month. I'm working really hard on staying in the moment and not looking too far forward or dreading the worst.
So I hope both of us get that chemo that works. I do know there are still a few more to try if FEC doesn't but yeh I want this one to work for a while at least.
Moira
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I have not chimed in on this thread yet, though I have been following it. I was diagnosed back in October 2013 with extensive liver and bone mets from the start. I am on P/H/T. I had a scan after 3 treatments and there has been significant reduction in the liver lesions and sizable breast tumor was obliterated. My CA27.29 went from 194 to 44. The MO has called this a beautiful response.
The side effects have been manageable for me but I have heard others have struggled. I had the "purge" the first couple treatments, but I just had my 5th treatment last week and this has been the least amount of side effects to date. I too am so encouraged by those that went NED with liver mets. I so look forward to joining those ranks.
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Welcome, Amanda. What a beautiful response you've had so far to tx! Wow! Keeps me hopeful. I've learned from these boards there is hope and there are many treatments, so I just have to try and be patient. Please keep us posted, we are in this together! I believe liver mets are more difficult than some other mets because of the fact the liver has so many diff. functions. However, I have read many success stories here at managing them and sometimes completely resolving them.
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Hi ladies,
I am so glad i found this thread specific to liver mets. I was diagnosed in 2010 with stage III ILC , i was treated with ACT and femara. December 2013 went for check on hip pain and was dxd with liver mets 10 spots on the liver the largest less than 1cm, confirmed by liver biopsy . So now i am stageIV ER+ , just started my first carboplatin+ gemzar round. My onc opted for chemo for three rounds of one week combo and one week gemzar alone. After three rounds he will scan . I am so happy and glad to have found you ladies , you are all heroes and you gave me hope. I had a fatty liver since my first chemo but never had liver pain, just some bloating which I always thought my colon. Now after chemo i sometimes have a very faint pain along the stomach level and right rib side which is subsiding. I wish you all a long life and i hope we kick this cancer to hell. One question is a reoccurrence of ILC with mets considered metastatic breast cancer? I never got this part... 😊😊😊
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jimmiebell--why is the ablation not an option? Earlier in my journey, I was considering this option? Best of luck to you finding what works for you!
Also, I went to see my pa today for pre-chemo labs and check up. I had my list of complaints. But the one I was most concerned about, she was not! I have three liver mets and they have shrunk to mm's and been stable for almost a year. But I have noticed recently that I have a spot below my rib cage that is very sore to the touch. I think I remember someone saying on here that they were able to point out their liver met too. I was hoping to get a scan now as I'm not due for one until end of February. Should I push for one now?
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Hi Woodylb--
Sorry you have joined our stage iv club, but the ladies here are sooo helpful and supportive, and they "get it" better than anyone else I know (besides my friends who are also stage 4). Your recurrence of ILC is considered metastatic breast cancer, since it showed up in a "distant" area beyond the breast.
I have occasional abdominal and rib area pain. My MO reminds me that all of those little pains are not all cancer, and that even if every bit of cancer could be eliminated from my body, there could/would be residual damage that could cause aches and pains from the cancer. Luckily I've had very little pain to deal with , and there are plenty of pain meds available if needed. Good luck with the chemo- I hope you get quick and positive results!
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