How are people with liver mets doing?
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Donnabelle, good for you, making cancer treatment work around your life and not the other way around. I’ve heard Cleveland clinic is a top-notch place. Surely they could understand the stage iv life and provide the treatment. Your doc should provide notes for the doc there. Maybe take a copy of your latest labs and the note with you as backup.
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Donna, I agree with HLB - reach out to the facility in Cleveland sooner rather than later. Immediately if possible. At minimum, you will need to register and provide them with your medical records in advance. If you start the process now, you will have time to pull any records they need. You will probably need to see a doctor there first but possibly they will permit a Skype/online/phone type meeting in advance and then you can schedule an in person appointment the day of your infusion. If would certainly help if your MO could put in a call over to the facility but sounds like you may not have that luxury.
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Yes, what JFL said. Start now.
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Thanks for the responses. I had planned on calling the Cleveland Clinic tomorrow so I will see what they say. My doctor actually is fantastic and very responsive and her nurse can make things happen quickly, so if I get a reasonable response from Cleveland hopefully it will work. Otherwise I will be late getting the treatment about 5 days. I don’t want cancer ruling my life and being able to work around the schedule somehow is important, so we will see!
Donna
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I'm having a liver MRI on Wednesday. My IR ordered it. He prefers MRI for liver. In September when PET showed increased uptake, MRI cleared up that confusion but also showed four tiny areas that could be mets. So this one should tell him what's really going on. Then on December 27 I guess I will still have the PET my MO ordered.
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Good luck grann. I hope it's nothing, just a bit of scarring. Maybe from the treatment. If not, it will caught early and small! I have finally gotten used to the fact that not every problem I have is Cancer. It took a long time because before Cancer I never had any health problem at all. I feel as if I don't worry much, but when I have a good scan my relief is so profound that I think I must be a giant ball of stress without realizing it!
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My liver mets have become a little more persistent. l'm also under treatment for a small blood clot found in my left lung on a recent CT scan I had for pain on my right side. Unfortunately, my liver is really mucking about my blood thinner levels which aren't coming down even without taking Wafarin. Feeling really rotten, I went in ER Thursday morning, as I was getting out of control not eating and drinking much (weirdest feeling for me who has never had a problem with my appetite) ,v dehydrated (prob from chemo, no drink), constipation and generally rotten malaise. I was admitted and monitored. All low levels of supplements were corrected. I had a Pet scan booked for the Thursday This had increasing size cancer spots and increase in size of liver.. All in all a sorry state. I had continuous saline for dehydration which made me feel much better. I had a stints put in in April, so the surgeon was consulted, he said a metal stint might be appropriate, we parked that for a few days to see if I would be well enough for the procedure. My husband had a v frank discussion with my MO, because I felt my presence might make them more emotional, this might seems strange it would certainly not be good for me to be interrupted, I trust them both. What she said was we need to get me on chemo for any chance to shrink these spots, which is difficult given my neutrophils are v low (are 0.22, should be =>1 for chemo.
All in all I went in ER Thursday morning. I was getting out of control not eating and drinking much (weirdest feeling for me who never has a problem with my apitite) , v dehydrated (perhaps from chemo, not much drinking and eating), constipation and generally rotten malaise. I was admitted and monitored. All low levels of supplements were corrected. I had a Pet scan booked for the Thurs eve. This unfortunately showed increasing size cancer spots and size of liver. My neutrophils crashed. All in all a sorry state. My bilirubin, which I had so much trouble in March actually held fast, at 3.5, only up a point since a week ago. Not great but not disastrous. I and my Mo thought it would be in the teens as I was so unwell. Other liver markers were high. I had continuous saline for dehydration which made me feel much better. I had had stints put in in April, so the surgeon was consulted, he said a metal stint might be appropriate, we have parked that for a few days to see if I would be well enough for the procedure.
My husband had a v frank discussion with my MO, alone because I felt my presence might make them more emotional and difficult to stay focused and frank, sounds strange but it was my idea and decision and I feel the right one. I trust them both. The decision is to try to get me on chemos, particularly as my Bilirubin is not skyrocketing, only problem is getting my neutrophils raised, I've had two shots and am hopeful Currently, it's 0.22, needs to be >= 1. Last time the shots were a little delayed but had a lasting effect.
They talked prognosis which we feel is probably through to January - what I expected . So we are slowly getting my boys (22&20) up to date with currently the decision made they come home end of this week after essential finals. They can come home earlier if they want but my MO says I'm not in danger right now - though sadly I know how quick a liver met can change, so things may change. They have both prepared their colleges so they can leave at a moments notice.
I'm fighting on, definitely NOT giving up, but treating life a bit more gently with myself and fitting in some treats (I went out to lunch today with all my siblings who have come over for the week from the UK - 2 brothers and a sister.) Getting great support physically and emotionally.
It's always sad to give this sort of news to the group, when so many are so hopeful. I say keep up your hope, I still have some, I've been with Mets for two years so am following averages or with some luck will overtake these and come through this crisis.
Love to you all
And try to stay calm and focused on yourself and your needs.
Sarah
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Scwilly I'm sorry things are crappy right now. I hope things can turn around. Like you said, things can change quickly and it's very scary. But they can also change the other way. I will pray for you and hope there will be a good solution. Meanwhile enjoy the company of your siblings.
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Sarah, I am sad to read your post. If it isn't one thing with this disease, it is another. Pretty amazing how well your bilirubin has remained in check since your stents we inserted. Now, if those other pesky issues would clear up. I will be thinking about you, your boys and the rest of your family. Sounds like a nice treat to have your siblings here! You have bounced back from a pretty tough situation when you had your bilirubin issues - one never knows. Our bodies are pretty miraculous. I am amazed by what they can tolerate.
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yez JFL we were so shocked, my MO expected results in the teens and at 3.5 we were all
Shocked. Today I went back to ER as I had blood in my urine. We never discovered why but I have antibiotics for general urine infections(serious ones have been ruled out.) I am going to flight like I did last April. - this time another type of situation. Almist all my blood results are really good for me, and even blood clotting getting better. And Bilirubin in the blood. Finding a chemo will be key for mae. Thankyou for your kind words.
HLB - I am xing all my digits for a solution that my body can tillerate. My siblings all flying out quickly from the uk as been so comforting.
Sarah
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Love and comfort to you, Sarah. I'm so glad that your sibs are on the way. Holding you in my heart no matter what.
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Scwilly, I am so sorry for all you are going through. This fighting cancer wears us down both body and mind. Keep fighting.
I myself was getting to the point my liver was so bad the doctors wanted to give me the end of life talk and one said I might be better off letting it ride instead going through more and more. I said well I just don’t feel that bad! I’m still fighting, what’s next? I did go on a/c chemo and it has been a rough ride. A few times my mind wandered towards what my doctor had said. I might be better just living out life. I have blood transfusions and spent a week in the hospital with this. I am seeing the light and glimpse of hope. My tumor markers and liver blood work is going down.
Look into a/c or doxil for some options. They are strong ones.
I hope you start feeling better soon.
Sarah
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Scwilly-
My prayers are with you.
Skitzblitz-
My prayers are with you.
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Donnabelle-My doctor allows me to take no more than a two week break, between infusions. We travel a lot, and I get my appointments scheduled accordingly. Just wait until you get back for your infusion, if you are not going to gone too long. That's what I do.
Sarah-I'm so sorry what you are going through. Big hugs!
Grannax-Good luck with your MRI!
Hugs to all!
Lynne
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Sarah, I hope you can feel the waves of strength and encouragement I'm sending your way. Your posts are so strong, it feels like you've got a good fight in you to face what's next. In the meantime, bask in the glow of your loving family and rest up, darling.
Skitz, a/c is a mother, but hope you continue your positive turnaround.
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Well, I had a PET scan on Saturday and my DH was able to access the results today - bones inactive/stable (going on 4 years now), all areas in liver in both lobes where I had Y90 inactive and shrinking. However, there are two new lesions in my liver - one in each lobe, 1cm and 2cm. Feeling super disappointed and worried. Not sure what is next, I will be going on my 6th line of treatment. I suspect my MO will recommend Halaven but I honestly don't feel up for another standard IV chemo right now. I am pretty wiped out with the anemia from Doxil and need a break. My immune system seems to be so low, which doesn't seem like a good state to successfully treat liver mets. Also, I still have a lot of neuropathy in my feet from Abraxane, my previous drug, and don't know how much more my feet can take - I don't want to compromise my ability to walk and have to be mindful of balance issues as it is. I understand Halaven causes neuropathy. For a while, I was getting too thin but have been able to "beef up" a bit after getting a blood transfusion for the anemia (my appetite returned to normal afterward, which was surprising and great).
I meet with MO on Friday and I expect he will not be giving me Doxil. Some options I am thinking about are: metronomic therapy (cyclophosphamide and possibly methotrexate or Xeloda), Verzenio, Navelbine and Halaven. I am also looking into clinical trials for HER2 "single" equivocal (meaning IHC equivocal, FISH negative rather than "dual" equivocal which is equivocal on both tests). My DH is going to call my MO tomorrow to "float" the metronomic therapy idea per my request. I would like to give my MO time to look into it and run it by some peers before my appointment. My MO may be open to it but it is not something he would suggest on his own at this point, given it is not a common therapy and also given how well I have tolerated the side effects of my previous treatments.
Any ideas on possible treatments would be welcome. As you can see from my signature block, I am in the "heavily pretreated" category at this point.
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JFL - Sorry to hear about the new spots. I don't have a lot to offer in terms of thoughts on your next treatment plan, but if you consider metronomic xeloda, you may want to read this: https://www.ncbi.nlm.nih.gov/pubmed/30061234. Summary is xeloda is more effective combined with calcium lactate.
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JFL- Will they do a new liver biopsy? Here are some treatments you did not have yet, in no particular order, assuming the cancer remains ER-positive:
1) Alpelisib-Faslodex if the cancer is PI3K mutant
2) Abemaciclib-Keytruda https://clinicaltrials.ucsf.edu/trial/NCT02779751
or Abemaciclib-Alpelisib or multiple immuno combos https://clinicaltrials.ucsf.edu/trial/NCT03280563; https://clinicaltrials.ucsf.edu/trial/NCT03289962
3) CDK7 inhibitor -Faslodex https://www.cancer.gov/about-cancer/treatment/clin...
4) NKTR-102 https://www.mskcc.org/cancer-care/clinical-trials/...More infor may be coming out from the San Antonio breast conference, which starts tomorrow...
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JFL, Sorry to hear about the new lesions on your liver. I want to let you know that there are preventive measures for neuropathy. I believe my sister has been taking a special vitamin E capsule which has prevented her from getting neuropathy.
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Hi JFL, I'm so sorry to read about the new spots...I'm wondering if it wouldn't be wise to give your body a chance to detox and get healthier and stronger before proceeding, or if it would be too dangerous to wait while the liver and kidneys clear the accumulated poisons.
I worry so much about what years of these medications are doing to our remaining functioning organs, but on the other hand we don't really have a choice...do we?
I'm currently experiencing intense pain in my left leg, buttock and lower spine and the possibility of a femur fracture without impact, after getting good results from a pet scan only a month ago....these are side effects usually associated with Xgeva, a medication that's supposed to protect our bones. To top it all off, I found out that if they stop the medication my blood could get flooded with too much calcium which can be lethal.....plus my bones will get brittle again....
When I asked my MO how we could PREVENT a fracture, he prescribed X-rays....which would not prevent anything, as the fractures occur unexpectedly. I checked the report from the clinical trial on the Amgen Website and they offer no solution either. If someone knows a way out please let me know....
Cancer treatments defy logic sometimes ...they are simply too unpredicable and inconsistent to be called scientific...IMHO...
Sending you JFL, and all the others suffering from unexpected changes my best wishes for a smart and successful solution to all our current predictments...Be well
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scwilly: prayers your way for healing, strength, comfort and peace. Lifting you up in prayer everyday.
Tricia
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Oh goodness ladies, too much bad news today. I do have my MRI tomorrow but I don't know when I will get the results. Why can't we all be enjoying the Christmas season like it seems like everyone else is doing. 🎅🎄 Instead we're in the hospital or gathering family for support as who knows how fast or what will happen next. Why do we have to live like this? Someone please find a cure, we desperately need it. Especially those of us with liver mets.😢 💞
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trying to find the joy this year. Today marks 6 years since they told me that cancer had spread to my liver and brain.
I’ve been through almost every medicine possible. The mets in my brain are unstable and my liver is tbd at a scan I have dec 31st.
You are all in my thoughts and I hope we all find sone moments of peace during s season most take forgranted.
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I second that motion!! And speedy quick, can we just be done and be gifted with a get out of jail card now?
I am cross-posting a onclive video I posted this morning on the Alpeisib thread, from today talking about secondline treatments, and in the one right after that they are talking about new chemo combos. I like where Joyce says she is adjusting what she considers crisis stage, becasue some of the targeted drugs are working as well, and just as fast, as chemo. Also, how she has a 20 year mets patient who is currently having a great response on the Alpelisib
https://www.onclive.com/peer-exchange/unmet-needs-...
PS Nice discussion here of PARP inhibitors, and how the data say get them early in the sequence of drugs in order to have survival advantage. Right now they are only for BRCA-mutant cancers, but if we can get a CDK12 inhibitor, the pre-clinical data indicate it would enable PARP inhibitors to work and we could all go on this regimen. Nice if they would just move faster on these clinical trials...
Here is a link to a recent CDK12 story:https://medicalxpress.com/news/2018-12-short-cdk12...
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Thrivingmama, Cure-ious, AussieCat & Miaomix, thanks for your responses and suggestions. Sadly, I remain in denial even after 4 years. I agree, we all need get out of jail free cards! I will have to ask for that from Santa this year!
Miao, I am sorry to hear about your potential femur issues with XGeva. The only thing that I read over the years that can help is regular weight-bearing exercise, although that is of no use if you are to the point of a fracture. I recall Janis on these boards had a femur fracture in the last few years - I can't recall her screen name but her signature says "Enjoy every sandwich". She is a long-term mets survivor (8 or more years) but rarely posts anymore. I worry about XGeva femur fracture as well.
Cure-ious, thanks for sending the trial links!! I am looking into all of those. At least one is for triple negative and another for brain mets, which would exclude me, but a few of them are possibilities. Verzenio + Alpesilib sounds interesting. I will also watch the video link you posted.
My DH talked to my MO this morning - my MO threw out Halaven as a next treatment right off the bat which I expected. He noted that w/r/t Verzenio, there is still the outstanding question of how well Verzenio will work on people who already failed Ibrance but that some doctors are starting to use Verzenio in combo with chemo. He also mentioned that my facility has worked with metronomic therapy in the past but that it hasn't had good results in what he has seen. My MO said that he would bounce some ideas off of colleagues and some other doctors at the San Antonio Breast Cancer Conference. I do appreciate that he thinks outside the box and takes into account my input and quality of life concerns. He wants me to take a few weeks off to recover from Doxil. On the one hand, that sounds great, on the other, it makes me nervous. I try to avoid downtime between treatments as my cancer can grow very rapidly in a short amount of time.
Grannax, fingers crossed for good scan results for you.
Leftfoot, congrats on 6 years with liver and brain mets. Praying you receive a miracle this holiday season.
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Hi all,
Thinking and praying daily of everyone. I am getting carbogem for liver mets. I had my chemo today and my alkaline phosophate went up thirty points (already up) and my AST is up. I guess I have been in denial about this-but I have to face the truth about this. Are there any positive stories with women with liver mets? My doctor still thinks I am doing well. I just hate this-for all of us.
Lisa
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lisajo - I'll share my experience, in case it is of any help. My AST, ALT, and Alk P all went high after I started gemcarbo for liver mets. they continued trending up until I took a supplement break, then they dropped some (but were still elevated). I restarted supplements and they continued dropping, but then eventually started trending up again. I started gemcarbo in Feb and my April, July, and October PET scans all showed NED. I stopped gemcarbo in October and am now off chemo. My November labs still showed elevated. In my case, despite elevated LFTs, a very good cancer response simultaneously. This is to say, it doesn't seem the LFTs are a result of cancer, but rather of chemo or some combination of chemo + supplements.
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lisajo6: my LFTs were elevated when I started gem/carbo. I have been on the drugs for 16 months and now they are all normal except during labs before week 1 infusion my ALK PHOS rises to about 120-128 now. Week 2 labs show that the ALK PHOS is normal range. This has been trending this way for about 6 months. I too think it might be from the chemo and not the cancer.
Wish I could get to NED like thrivingmama but my ONC does not think so. I have very little cancer in my liver now but when I started I had diffuse cancer throughout my liver so just praying is stays stable or continues to decease. My CA 27.29 now ranges between 41-48 (high normal 40) was 3580 at start of chemo. I am always hoping for below 40 and NED. Next Chest CT scan (which has been normal) and MRI ABD and Pelvis is DEC 17th RIGHT before christmas. Praying all is well.
Prays and hugs to all.
Tricia
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I too am thinking of and praying for all you daily too. For me dealing with MBC around the holidays has been hard.
I'm not on gemcarbo, but gemzar/taxol. Prior to starting chemo my ALT was 100 and shot up to 138 after the first chemo. I'm on my 5th cycle now and each time I get chemo the LFT rises that week only to come down at the end of the cycle, so I know some of it is related to the chemo. Last LFTs have been my lowest 20s. When you mentioned elevated LFTs how high are they? My MO says the number to watch is bilirubin, which thankfully for me has stayed at 0.5 this whole time.
PB
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My wife's MRI's always get the observation by the radiologist that they appear as cirrhosis or pseudo-cirrhosis, and question whether her cancer diagnosis has been confirmed. It was confirmed by biopsy after a very confusing initial period of time where they weren't sure just what they were dealing with. Just chiming in, as others in earlier posts had similar observations.
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