How are people with liver mets doing?
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Hi Hartrish,
I'm *glad* to see someone else on Carbo, although mine is combined with Etoposide (derived from May Apples, American Mandrake). My first three-day round of infusions was May 7 - 9 + Neulasta and as of the 18th, my WBC was still very, very low. I'm feeling fine with no obvious SEs, although my hair is starting to loosen from it mooring. Grr. Next cycle (#2 out of 3) begins next Tuesday and I'll see what's-the-what as far as my WBC, hoping it'll be high enough to push ahead.
Katty
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Z, thank you for sharing the good news, pretty scared right now, the reality of this monster is sinking in
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hi all,
It's been so deeply disconcerting to read about the back to back losses of Kaylynne, Wendy, and Bluebird. May their beautiful souls rest In the peace of God.
Z- thank you for lifting our spirits with the excellent news of your amazing response to Abraxane. You give us the hope we need to continue fighting while waiting for some sort of breakthrough, and thank you Cure-ious for reporting news from the front lines.
Im grateful this morning. There's some progression in my bones but all the organs are still healthy. I was suffering from pangs on the right side and flack and suspected liver involvement. I have finally reached a place of great physical, mental and emotional well-being, a good balance between tamoxifen and the rest of my life, but I'm afraid that will be disrupted soon. Tomorrow I will find out if there's something else I can try before moving on to Xeloda.
Mom, in addition to the brain food you will be taking, may I suggest you support your adrenals, that are probably depleated by the constant stress and loss of beautiful Dani. Pure liquirice is one way of supplementing. I get mine from Italy, it should be pure, not the sugary concoction they sell here.
Amazon has many choices, one is called Nipitz liquirice pellets. No more than one or two a day....very powerful stuff
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Miaomix,
Licorice is pretty darn estrogenic. http://suppversity.blogspot.com/2011/11/licorice-m...
Which is a giant bummer, because before I was diagnosed, I was a licorice fiend. If you have new information to the contrary, I am all ears. I miss it so.
Happy dance at staying bone only!
Jennifer
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Just saw this article about gut microbes and liver cancer and mets, this is the beginning:
Scientists have found a connection between bacteria in the gut and antitumor immune responses in the liver. Their study, published May 25 in Science, was led by researchers in the Center for Cancer Research (CCR) at the National Cancer Institute (NCI). It showed that bacteria found in the gut of mice affect the liver's antitumor immune function. The findings have implications for understanding the mechanisms that lead to liver cancer and for therapeutic approaches to treat them. NCI is part of the National Institutes of Health.
https://medicalxpress.com/print446386608.html
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hi kattysmith:
Been on carbo/gemzar since sept 8, 2017. Really has not been to bad as far as SEs, just some fatigue, sore muscles, and low WBCs. I get neulasta at end of each cycle as that is keeping my WBCs and neutrophils up. Went to ENT doc yesterday about ringing in ears, thought it might be from carbo. He said a little hearing loss but just normal for my age and recommended to stay on carbo and do hearing screen every 4-6 weeks. Was so glad because the carbo/gemzar is working so well. I started out with.CA 27.29 tumor marker of 3580 (yes that is right number) and it is down to 72 (normal is < 40). MRI originally showed diffuse cancer throughout liver and now shows very little cancer. Hoping I can get to NED but ONC not sure about that.
Trying to enjoy life right now and keep moving forward. Hope carbo is as good to you as it has been to me.
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blainejenner, you're right any androgens will turn into estrogens, but Mom doesn't have BC, so she has nothing to worry about and much to gain from rebalancing her hormones. Better than taking steroids.
I take my pellets in the minimum amount to get a much needed response. Since I am on anti estrogens, and have been feeling extremely depleated, I'm taking a calculated risk, but let me tell you, right now I am sitting on a bench at the tip of Manhattan that I reached by biking here. This used to be a daily ritual that I greatly enjoyed and that I had to give up. I simply was too fatigued physically and mentally to even bring my bike downstairs. Today as I easily biked down here I felt normal, like my old self again. Something I had not enjoyed in three years. For me it's worth it. Tomorrow my MO will probably put on Xeloda, and in couple weeks, a day such as this will be a far-away dream again. Ashwaganda is approved by MSKCC for adrenal support. I take that too, but I get an immediate response from one tiny licorice pellet. But thank you for bringing up its estrogenic effect. I realized only as I biked that I should have placed a warning for everyone else. I have a cowboy mentality, I have been taking only 10mg of tamoxifen daily because on 20 mg i was becoming a depressed catatonic mess and I figured 10 was better than nothing
hartrish, congratulations on punching those TM down to a pulp.
Im back home exhausted but very happy after a 3.5 miles and 180 minutes bike ride in 80 degrees weather....ahhhh the good old days....of wine and roses....instead of pills and blood tests....
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MM,
What bench, where? I had some favorite spots around there. I live in Upstate now.
I long for the energy of the old days. It must have felt great to whip along the streets, zipping through intersections. If it helps at all, I had great energy on Xeloda - no fatigue at all. God, I loved that drug. No infusions, good remission. Those were the days! Doxil is doing the job, but the anemia is problematic.
You go, cowboy lady.
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Hi Jennifer, It's a shaded bench in Wagner park that located right before Pier 1, it presides over the breathtaking Hudson estuary....today I managed to push further, I went around the tip of Manhattan, past what used to be the old Fulton street fish market, up the east river park and then across town back to fifth ave where I live. it was effortless throughout, I felt no aches and pains, no fatigue, till the last stretch across town. I got home exhausted but very happy, and even took a shower before collapsing.
You know...another way to feed the adrenals is to eat fatty, cholesterol rich proteins, like eggs, with a good pinch of sea salt and a rich source of vitamin C at the same time, that will do it, but nothing beats the little licorice pellet. I've started taking also couple drops of Lugol's solution iodine in the morning. That's been also pivotal in getting my old self back again.
Thank you for sharing your positive review of X....I'll be less fearful tomorrow. Let me know when you visit Manhattan, god willing we can chat while we have coffee together at the bench,
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Sounds amazing. When I lived near Detroit, I used to bike the entire greenbelt park system, and I dream of it still. It's the closest I've ever come to flying.
I should be eating some eggs. Thanks for the reminder. We get amazing eggs from a neighbor, whose girls eat tons of bugs and green weeds. They taste like eggs used to taste.
The lovely thing about Xeloda is the autonomy. If you don't want to take it, you don't. No team of nurses crowded around you, asking about the last time you pooped. Not that I'm recommending skipping a dose, but you could.
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Blainejennifer you reminded me of one of the horrible visits to the doc at Cornell no less, Dani was still sitting in the waiting area, and this idiotic Barbie strolls in, and starts asking how she is doing AND about her BMs i kid you not, i'm telling you D was incredible how she held back a punch, she told her DO YOU MIND NOT discussing this OVER HERE!!! I get upset just remembering, HIPA is only for the family, to torture ppl that care, but to the docs, nurses they forget about it if they could rush their appointments.
Miao how vivid your outing. Thanks guys for the heads up, it's def something to consider.
Hartrish in your situation, with a new ringing in the ears, would maybe a brain MRI not be a consideration? How could he know what's normal just by looking at you? Sorry, believe me i don't want to cause any unnecessary anxiety, but with mets and all maybe would be wise a more thorough check up. Yes, of course it could be just age blah blah but...
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KPW3 - One of the coolest articles on gut biome and cancer, and relevant to me. Thank you.
>Z<
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I feel a bit stunned lately, reading loss after loss. Bluebird, Wendy, Kaylynne, Kaayborg . . . . Heartbreaking and unbelievable.
It is becoming harder to ignore what seems to be the inevitable although I still live in a thick fog of denial.
I have noticed several of my posts this week didn't show up for some reason. Seems to be a technical glitch with the boards.
Miao, the bike ride sounds wonderful. I can picture your entire path. When I am visiting New York, I enjoy running in Central Park or up the Hudson, starting in Battery Park. I regret not walking/running those paths when I lived in NYC. Not sure what I was thinking back then. Spent more time in gyms than outside for exercise in NYC.
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Hello,
Are you still here on the boards? I have just been diagnoised with mets to liver, lungs and bone, lymph nodes. I really need to here that people live longer than 3 months.
What kind of life is this?? any quality of life or just chemo and bed...
Anxious..affraid and really pissed off to bein this situation!
Raven
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Hello Serb4.
I am still here and was diagnosed with widespread liver mets Oct 2016. It was tough at the beginning; worrying about imminent death sentence, depression..all normal emotions. I started AC chemo to treat the mets aggressively, now on Letrozole and Ibrance. I am stable for now and feel almost normal.
It is not an easy journey, but I want to live and experience life. I am surviving.
Keep posting and read back several months on this thread. You will be inspired.
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im here in the BC lounge area at MSKCC sipping a decaf cappuccino ( they are well known for the quality of their coffee maker too) and munching on little bags of delicious Graham crackers that remind me of the time when I first arrived in the USA forty plus years ago....addictive junk food I don't allow in the house, but ohhh so comforting on a day such as this. Hopefully I won't crash from the sugar while I'm talking to my new MO....
JFL, we must hook up next time you come to Manhattan! It would be so much fun, hopefully we will be strong enough to excercise together along the Hudson River Park....with or without walkers.
Update: moving on to 3000mg of Xeloda one week on and one week off. May God help me, and all of us
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Hi just wanted to ask how you feel with liver mets? I am not sure how I feel because I am awaiting a hysterectomy on June 6. I have baseball cysts on my ovaries. I feel like that is where most of my pain is coming from. I will be so glad to get my hysterectomy.
I was dx in May of 2002' with stage 1. Again in Oct.2008' with stage 1 and at that time put on Tamoxifen. Now I been recently dx with liver mets, Stage 4 and still awaiting to see what will come out of my hysterectomy.
I feel really sad today. Anyone have an similiar dx/surgery?
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Kell, Welcome to our group. I am sorry that you have been diagnosed with liver mets, but you have come to the right place. There are many wonderful, intelligent women and men here who provide support, answer questions, and share their knowledge. You have certainly been though a lot in the past 16 years. And now you have cysts in addition to mets? That is just horrible. I have to say that I think it it is amazing that you are seemingly so strong and level-headed when you have baseball-sized cysts on your ovaries. You must be extremely uncomfortable. I suspect that you are correct in thinking that most (if not all) of your pain is coming from those cysts. They must be putting a tremendous amount of pressure on your abdominal area. I think that you will see a great deal of relief onc even out recover from surgery. I have had no pain, elevated liver enzymes, or other symptoms with my liver mets. My mets were found through scans. My experience is not unusual although some people do have symptoms. I have no experience with hysterectomy, but someone else should come along and share their thoughts.Please keep us updated on how you are doing. Ask more questions if you have them. I am sending you a virtual hug, but a very gentle one so I don't cause more pain.
Hugs and prayers from, Lynne
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Kell001-
Welcome to our group.
Everyone is different. My story is I thought I was Stage II A, going thru chemo. We did a CT for something totally unrelated and found the mets -- 8cm in liver. I had no symptoms. Great appetite(before chemo), no weight loss ( before mastectomy and starting chemo), liver enzymes total normal. At 8 cm we think it was there for a while. Cancer is sneaky. I also wonder if this is "normal". Did I feel something as it grew and ignored it? Maybe someone else can chime in.
We started Lupron/Letrozole/Ibrance combo and liver mass has decreased in size.
Wishing you good success with your surgery and then the treatment plan your MO puts you on.
Keep us posted and ask any questions you have-----we all have questions.
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mom: when I was admitted to hospital for my vertigo they did a brain ct and Angio MRI that was negative for any brain mets and no other abnormalitie. Thank you for asking
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Kell-sorry you find yourself here but it's a great support source. I have liver mets and I did have mild right side pain, sometimes stronger. I had it for about seven months while Ibrance was failing and then Fulvestrant was not effective. It has gone now that I have 3 cycles of Xeloda behind me. I suspect that it would be difficult to differentiate between the pain of the ovarian cyst and that of liver mets. it depends on size and location. You sure have a lot on your plate right now; no wonder you are feeling sad. it will get so much better when you get the information about the ovarian cysts. There are so many great treatments available for the liver mets! I am celebrating 2 years with them. just so many unknowns for you right now. The damn anxiety meter must be on overload. I am thinking of you and sending love and hugs. MJH
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serb4 and kell001
Welcome to our group. When I was first dx with mets I thought about death and dying a lot. Still crosses my mind. I try and focus on positives things going on in my life. Very difficult on some days.
I had diffuse mets to my liver when I was dx. Been on carbo/gemzar for 9 months and have very little cancer in my liver. I never had liver pain at first but once I was on chemo I did experience some pain. Thinking it was from the chemo attacking the cancer. My liver enzymes were normal at first but once on chemo I did have some elevation. Last few months the liver enzymes have been normal.
I hope the docs can find a chemo treatment that is not so harsh to your bodies. Carbo/Gemzar has been good for me with just a few side effects (constipation, some fatigue, a little nausea and low WBCs).
Sending prayers and hugs to both of you
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hello to my met sisters. Sorry that I’ve been MIA—I’ve been reading along, but was having a hard time posting. With all of the losses we’ve had, I found myself in a depression thinking I’m not far behind. My heart aches for all of those beautiful women and their families.
I’ve been doing OK. Had my 2nd dose of Opdivo last week, and wound up having a reaction. I was driving home, and all of a sudden could not stop shivering...full on from head to toe. I pulled over to call my nurse, and could barely dial because my hands were shaking so bad. She said to head back right away, or call an ambulance if I couldn’t make it. When I arrived back, I had 6 people over me giving me hot blankets, morphine and Benadryl infusions, and I took ibuprofen. Within an hour I was back to normal. I guess this could be a good sign that Opdivo is working, and it’s a pretty good possibility that it won’t happen with future infusions. I had Y90 mapping this past Tuesday, and they will treat my right lobe this coming Tuesday. I’m also having terrible lower back pain and fevers all week. My MO had me go in today for a stat CT of my back to make sure nothing was crushed. Nothing crushed...just extensive mets. I’m now on Morphine extended release tabs, and will take Norco for breakthrough pain.
The thing that sux about all of this is that both treatments (Opdivo and Y90) are slow to see results...so while we wait to see how effective these treatments are, my cancer could be going haywire. My dd turned 6 last week, and had her first ballet recital, and lost her first tooth today. All I can think about these days are all of the ‘firsts’ and milestones I will miss in her life. I have been so strong my entire life, even after this wretched diagnosis. I’ve been an emotional mess these past few weeks.
Sorry to dump this on all of you, and thank you for letting me dump this on you. If anyone understands, I know it’s each of you.
Z - I am so happy you’re feeling better these days! I was truly concerned, and it makes my heart happy that you’re seeing good results from Abraxane.
To all - I wish you lots of happy, pain free days! And praying that whatever treatment you are on gives you a nice long run. I used to pray for a cure (and still do), but I’d also be happywith a treatment that gives us many many years filled with nothing but joy.
xoxo KC
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KC1010, Whoa, you have been through the ringer. I hope that all the treatments you are having are working like gangbusters to knock out all those evils cells. When the time comes to see the results on scans, I hope they give you a reason to smile and dance and celebrate. It must be difficult to go through all this when you have such a young child. I am sure you appreciated and enjoyed your daughter's sixth birthday, lost tooth and ballet recital even more than other moms. I hope you are making videos of all these milestones. It will be wonderful for both of you to look at them together years from now. Of course you have been an emotional mess lately. You have been through more in the past few months than anyone should have to face in a lifetime. You are allowed to breakdown. No one can be strong all the time, KC. I know you are worried about missing your daughter's milestones, and I hope that you are around for all of them. I believe that Opdivo will be a magic bullet for some people, so why not you. If you want to set aside something special for your daughter, just in case, maybe you could make some videos that she can watch when she is reaching certain milestones. If you are there to share those milestones, you can watch the videos together and laugh or cry about what you said. If you are not there, she will be touched and reassured to see your face and hear your voice. You should also make videos of both of you together, reading a book, singing, dancing, laughing, cooking together, just talking. Those moments will bring you smiles and tears when you watch them over and over again. It is okay to rant and rave and expose your feelings here. We all need to do it sometimes. I do hope that Opdivo and the Y-90 procedure are the treatments that give you those many years filled with nothing but joy. I am lifting you and your sweet daughter up in prayer.
Hugs and prayers from, Lynne
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Serb4 - Definitely not chemo and bed. You want to move as much as you can. Join us on the exercise thread ... there is a group of ladies that will astonish you with their lifestyles.
The extend of the mets may not be the most important factor ... it's really whether they respond to drugs or not. Some forms of cancer are very hard to kill, others melt like butter with these drugs. Wishing you years in the later category.
With you totally on being pissed off... I think being angry, knowing you are angry and expressing it is very very healthy and will help you avoid depression. My advice is to get good and angry, go for a hike and show that cancer what's what. That's my strategy.
Kell - I did not feel much until I had >40% involvement in the liver. I did have gastric and digestive issues. I did not understand at the time they came from liver damage due to cancer spreading. Watch out for unexplained weight loss. When liver damage is significant, you don't digest food properly.
>Z<
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I fast for a couple of days before and after my chemo IV's. Today was the first day off a fast. I feel good the last two days of the fast; however, the switch back to glycolysis is exhausting. I ALWAYS clear the day after the fast because the fatigue and disfunction is just how it goes, but today was my daughter's field trip. My daughter wanted me to come, and every moment is precious these days, so I can't stay home and rest. And of course she forgot her lunch and I have to get it to her.
As I head out the door, I can't find my cell phone. I spent a frantic hour looking for it ,barely able to drag myself up and down the two flights of stairs of my house. I found it later in the day in the most obvious of places. I arrived very late and spent at field trip, without a cell phone. I was crabby and argumentative with DD. I couldn't make key follow up calls to Mayo without phone. I was deeply shaken that I did not advance the organization of the treatment of this brain lesion. It was one of those days when I couldn't hold it together.
So, at the end of a really rough day, I am exhausted and weak. i can barely make it up the stairs to my house. But I am home. I kick back and chill. I have a single chocolate truffle from the box that my husband brought back from Switzerland weeks ago. I haven't eaten anything with added sugar in long time. I can literally feel the sugar in my veins.
At 7pm the guest in my vacation rental calls and says the living room is flooded from a leak in the kitchen sink. With adrenalin and sugar coursing through my veins at levels not they have no seen in weeks, I grab my toolbox, mop and rags and DD and head for the condo. We charge up the stairs with my toolbox and mop, we mop up the water, I lift the couch to get the soggy carpet out. I carry two wet carpets to my car. All the while I am charming and chatty with my lovely guests from Waco, TX. I am freekin' wonder woman. And of course, I have no hair, I am wearing my tie die chemo hair tube. It is obvious to them I have cancer and I am on chemo. The look on their faces when I lifted that couch ...
That was one heck of a truffle.
Its been a tough month. Stay with us. I wish none of us were here, but it still helps to be in this together.
>Z<
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<z> my goodness what a day! You are such a strong and determined women! Just when you thought you could get some rest the universe said nope take this! You rose to the occasion with determination. I am always in awe of you and so very supportive of your efforts! Thinking of you and sending healing thoughts
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Serb4 and Kell001, Welcome to the group. You will find such good information on this site. I had to join a few years ago, I was going crazy and needed to talk to ladies that truly understand this disease.
Kell, I didn't have a hysterectomy but I was diagnosed with state 2a with Onco Dx of 9. They didn't feel I needed chemo, just radiation. Then they put me on Tamoxafin and I was on that for 8 years. After a few years on it, I started bleeding and my GYN did biopsies. No cancer. I had a D&C and I had a huge polyp in the uterus. Then about 4 years later, it happened again and the same thing, D&C. My uterus was filled with one big polyp. So I finally had my husband ask the pathologist at our local hospital and he said that is a side effect of Tamoxafin. I had a choice, they didn't want to do a hysto, so they tried Arimadex. That made me really sick. That same year 2016 I was diagnosed with mets in my bones. I was in such pain. I had a broken hip, mets to hip, pelvis, lower and middle of the spine and shoulder and skull. I started Ibrance, Faslodex and Xgeva for the bone. With in 9 months I had diffuse liver mets in both lobes. My MO put me on Xeloda and I got nine months out of that drug.
I went to Dana Farber and had liver biopsies and they found a drug that they thought would work but now after 3 weeks they pulled me off of Afinitor. My platelets are 45000 and red counts are terrible. I'm so tired I just have to lay down. They want my counts to come up, but one good thing my TMS went down and my liver enzymes are better. I will be put on 5mg. Afinitor nexts. It is by all means a very scary thing, but we have to have faith in our Docs. I hope your hysto goes good. I know its really scary, I cried for days after the liver diagnosis, then I just sucked it up and the ladies on this board will always help you.
These last two weeks have been really tough with the passing of some of my closest sisters. I can't stop thinking about it. It is so devastating to all of us when we lose our sisters.. Be strong and keep going.. Stay on the site and you will feel better.
Z, I am so happy for you to find a treatment and you are feeling better. I have been so worried about you. You are so strong and always have such good insight for everyone. Take care of yourself. Hugs to you.
Hugs to all and my condolences to all the families that are going through hard times with the loss of loved ones.
Love ,
Anita
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Zarovka, you constantly amaze me. Keep it up
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Z-I love your story. Unbelievable what we can do when we must; I think we all have inner cores of steel.
Love to each, MJH
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