How are people with liver mets doing?
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Liwi, so sorry to hear about the rapid turn of events. I am sure you must be scared and in shock. The thought of going to IV chemo is no fun but it is so powerful against the Ibrance failure mets explosions that happen to so many of us that I suspect you will feel some relief, both physically and mentally, starting it. Please keep us posted.
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Liwi, I'm so sorry to read about your setback....how shocking in view of what you thought all along was a successful therapy. This is a reminder to self that the TXs at times are worst than the disease...May you experience a complete reversal with the new TX. My heart is with you.
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Thanks to all for your support. I’m getting adjusted to the tube feeding and the prospect of another port (they took out original in 2015) and chemo. My oncologist is recommending Doxil. I think some of you have had it, any feedback? The one part I liked was that it is 1x per month. But that means it must be pretty strong and intense.
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Liwi, I am on Doxil and feel totally "normal" now. I have had 5 cycles. I had some odd, painful rashes after the first round and an extreme issue of my feet burning and blistering around round 2 or 3 but now that my dose has been lowered twice, I have no symptoms this round. My burning feet issue was probably caused by a combo of the dose, dealing with a temporarily compromised liver for a few weeks after Y90 and the fact that I did a lot of harsh things on my feet during the window 1 day before through 5 - 6 days after infusion. Had one of those factors not been present, I may have been okay. I later learned that that is the window to lay low and avoid all friction on feet, hands and body and to ice my feet and hands often. I have made adjustments and feel really great now. Rashes are common 2-3 cycles in and are considered somewhat self-limiting and they usually stop on their own, although I don't fully understand how that works. I think the skin figures out a way to protect itself against being burned by Doxil from the inside out in a similar way as skin builds up a tan on the outside to protect against the sun. Check out the Doxil thread for more info.
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I hate to have to post sad news. I just read on Inspire that Robin (rpoole1962) passed about a week ago. Her sister posted there. I had no idea she was having trouble recently as Abraxane was working so well for her. Robin was such a sweet person with an admirable dose of "sass" and will be missed dearly.
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Thanks JFL that is very helpful. I’m keep in mind the window for avoiding heavy feet activities. Your post makes me feel much more optimistic about the treatment. I’m a couple of weeks from starting, need my port put in and waiting for order to get through process,
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JFL, I am completely shocked about Robin. She posted on the Abraxane thread just a couple of months ago that her May scan showed that her liver and lung mets had completely resolved and she just had one little bone met left. Her tumor markers had plummeted and she felt good. What on earth happened?? I am just devastated.
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Liwi, if you need to start treatment before your port is in, that should be fine. I have managed about a year now on IV chemo with no port. I did Abraxane and now Doxil. Both are relatively short infusions. I am not opposed to getting a port, I just haven't found the need yet.
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I am also very shocked and saddened to hear of Robin’s passing. I remember her posts from when I first joined this thread and was wondering how she was doing.
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Not Robin. How can things change so quickly? It's no wonder we're scared to death all the time. She will be so missed.
JFL how are you doing in regard to y90? I guess it's hard to tell since you are doing chemo too.
Kiwi Do you know how long you'll have to have the feeding tube? I hope not too long but I'm glad you are getting some nutrients.
I cannot believe it's August. I'm supposed to have a scan this month.I've been very optimistic about it and have two trips planned in September. Right this minute I'm feeling scared that my liver mets might explode. Oh how much I hate cancer.
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So sorry to hear about Robin. Prayers for her loved ones.
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Robin (rpoole1962)
Sending love to her family.
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I was worried when Robin hadn't posted in so many weeks. Rest in peace. She seemed like such a lovely person, inside and out.
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Hello all,
Well I got good news and bads news today when I went to see my Oncologist with results of my ct scan . My lungs and lymph nodes have cleared up very well after 7 treatments of Taxol. But my liver mets has increased. So plan is to stop the Taxol and start a new treatment plan. I am now getting the first treatment which is Epirubicin and Cyclophosphamide together for 6-8 treatments every 3 weeks.I really need to hear from girls with liver mets. I am also to have a liver biopsy to confirm that it is breast cancerinthe liver. I have been crying my eyes out here in the chair. She told me this only happens in 5% of the patients being treated so very rare that the liver should react this way. I am soooooo upset.
Raven
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Raven, What do you mean by "it only happens in 5% of patients?" I too had a mixed response with Taxol. So my mixed response was that the cancer in my bone marrow was decreasing while my liver function tests (LFTs) indicated that something was going on. MRI showed heterogeneous liver instead of homogeneous which is indicative of diffuse mets. No tumors were seen. Now on A/C chemo and its working. I cried too. It was hard to believe it could work on one part but not another. It's the same cancer! Unfortunately A/C chemo has made me neutropenic so I've been hospitalized twice.-Jill
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To clarify my last post, my oncologist said that Usually the Taxol works on all the tumors and they respond my shrinking, she said that unfortunately in rare cases and mentioned 5 % they see an increase in tumors in other areas. In my case it´s the liver. I am having the biopsy done to confirm that it´s the same BC in the liver because these arre new growths that were not there last time or in May 2018 when I was last scanned. They have grown on the Taxol.
Do ypu know what thesenew med are? Do u have mets to the liver. I didn´t quite understand what you were saying.
Raven
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Heavy heavy sigh at the loss of Robin (rpoole). Another punch in the gut. She was a lovely smart woman who helped so many here on the boards! She’ll be missed
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Serb4: I was diagnosed in Oct 2016 with widespread liver mets, retroperitoneal lymphs, T12 met and pulmonary microemboli tumor syndrome. My lung arterioles were filled with micro tumor emboli, too small to be seen on xray and CTs. I was in the hospital for 20 days and underwent emergency chemo: Adriamycin (60mg/m2) and cytoxan (600mg/m2) for four 21 day cycles. It was brutal and almost gave up..
But 3 months later, I was stable and could breathe and ascites gone. Then started Letrozole/ Ibrance 100. It took 9 months, but became NEAD and my bone and CT scans last week showed no progression. (Although I know the cells still live in my body..just microscopic).
So please don't give up. You will have rough patches with the IV chemo. Try to keep up your nourishment and keep moving your muscles any way you can. Sleep. You will get stronger.
Keep posting. We care.
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Jill,and Raven, I totally relate to your frustration with treatment working in one area of the body and not another. That seems to be what happened to me, Ibrance worked well on my liver Mets but in the meantime I was getting new mets or maybe had unseen mets in my G.I. system that it did not effec. So now I will be switching Doxil. It is so frustrating. One minute you think things are going well with your treatment only to find out that it’s not working after all. My new meysaren’t able to be seen on Imaging so I’m not even sure how they’re going to measure whether the treatment’s effective other than by having my stomach start functioning again. Hopefully research will come up with better solutions sometime soon .
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Ibrance and Faslodex were helping my bone mets but I had progression to the liver and brain
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Liwi, Jill, and Raven - I have the same issue. Everything was hunky dory on Ibrance / Letrozole for two years, I was totally stable, then in April my regular scan showed progression in my liver, multiple new heterogenous hypodense liver lesions. After my liver biopsy, they discovered that some of the tumor cells were high-grade neuroendocrine cells (but still BC) and were ER/PR+/HER- like my other BC tumors. The liver tumors have two types of BC mets (sigh), but the chemo my MO put me on immediately - Carboplatin and Etoposide - should have made dramatic inroads IF the neuroendrine tumors were predominate, but nothing much happened. Post-chemo PET showed a slight improvement in the liver, but not much, and another random spot on my left flank showed a lot of uptake. He wanted to try Afintor and Aromasin, but I couldn't afford it (obscenely $$ even with insurance) and the financial aid was inadequate, so we're trying Faslodex for 8-10 weeks, then a scan again to see if THAT is having a greater effect. If Faslodex fails, the I think the plan is Xeloda. I feel like we are playing Whack-A-Mole!
Correction / Clarification: The tumors that were biopsied in my liver have at least two differing BC cell profiles (heterogeneous) within each tumor, which makes treatment much more complicated. I misunderstood and thought that each separate tumor was one distinct type (homogeneous) which is what my previous tumors were. Here's a good article that explains it much better than I have.
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I wonder how many of us who were on ibrance/letrozole had progression to the liver. It seemed like that was the case when I was on that treatment.
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I had progression to the liver on Ibrance. I started Ibrance with 2 bone mets. In 90 days I had multiple bone mets and also liver involvement..Xeloda got my liver under control but bone mets continue to explode.
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Liwi, I'm so sorry to hear what you are going through. Blasted lobular mets! Mine have pulled some unbelievable stunts at times-- shutting down my biliary system and causing multiple liver failures and pancreatitis without ever showing up on a scan in that area... drowning my heart in a liter of malignant fluid and almost causing a coronary in ER... I mean, just flat-out bizarre stuff. But somehow each time we have found a way out of the mess, and I am still plugging along. I pray the same for you!! Breathe and rest and look hard for a little joy somewhere. And please let us know how you are!!
As for Zarovka... I just read on another thread that Iwrite heard from her, and she's been on vacation. WHEW. So relieved to hear it.
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Liwi- sorry to hear about your recent developments. (My digestive tract often acts cranky and it really scares me for just this sort of reason.) Seb4, sorry about your setback, too. So very sorry to hear about Robin. These sudden losses are difficult - and I know they also frighten all of us.
I appreciate everyone's thoughts on the imaging. Good points for follow up. Thanks again.
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I also had progression to the liver while on Ibrance/Letrozole. I'd been 5 years bone only till that treatment.
Jennifer
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unfortunately after three cycles on Ibrance multiple liver mets showed from nowhere. Till then only bone mets. Now on A/C with good results but very tired and still hoping for a miracle.
Healing hugs,
Lena
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Back in April of 2017, I had my first scan after 3 months on IL. The TX kept everything stable except liver met. It took even more uptake than the scan at DX. So I guess that was progression. But, she referred me for y90 and did not change my TX. Now my lung and chest mets have responded more each scan and liver mets show no uptake over one year out.
I think liver mets are super stubborn!
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I was on Ibrance/letrozole for 6 months. At 3 months there was some growth in the lungs, but they said that they were old nodules showing up. I went another 3 months, and the tumors in my liver had grown. It had already been in my liver before that. When I was first rediagnosed, (7 years after being Stage 1) it was in my spine, lymph nodes, and lungs, but not my liver. I believe (that was 4 1/2 years ago), it showed in my liver after my first treatment (Faslodex) that I was on for a year and a half.
Heading to Dana-Farber in Boston, this afternoon, for a second opinion, on which chemo to do next (number 7 treatment in 6 years!). Hopefully, she'll have a chemo that is not once a week for 3 weeks, then one week off (as my oncologist here suggested), or one that has less side effects (I had plenty with the last one, Taxotere, that I was on for a year, I need a break!).
Hugs and prayers to all!
Lynne
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Hi Girls,
My liver biopsy is scheduled for august 20, before treatment Nr. 2 of my new chemo regime. I was Taken off Taxol after 7, plan was to finish 12 treatments. It worked well on my lungs and lymph nodes but I had an increase in liver tumors with high liver function tests. Some had disapperared. But one large tumor in liver grew from 4.6cm to 5.6 in 1.5 months. My lungs are better, much less coughing but not 100% maybe 90%.
I want to hear from girls who have had needle biopsy, I hate the thought of them sticking my liver but we need answers. Why didn´t taxol work?? Also a if anyone that has been on these new chemo drugs I was started on. It is new for me but been on the market 20 years. Has different names depending on country. Epirubicin (Farmorubicin) and cyclophosphamid (Sendoxan) I also put it on my new treatment list.
Any encouragement would be appreciated. I have T11 in bone, lungs and now liver is the focus.
Best regards,
Raven
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