How are people with liver mets doing?
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Momatt so sorry for all you and Dani are going through. As moms we always want to take the bad for us to spare our children. I know how hard this is for you but hopefully the new txt will kick Danis mets to the curb! When does Dani start?
Timothy that's wonderful!!!
Gator gal hoping the break from chemo and back onto ai s gives you great results
Babs
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HI momallthetime,
My heart goes out to Dani and you!
What a scary time for everyone and each of you is approaching it from your own directions.
I began this breast cancer journey at age 34 and quickly progressed. Now that I've been at it for 25 years - I'm old enough to be a mother to the young woman I was in 1991.
What a dear one she was, so invested in living; so sure there were paths to cure that I just needed to find; certain that even thinking of death would cause it.
Much has happened and while I've tenderness for the younger me, I see things on differently now.
Mom, it sounds like Dani's health care givers are on the ball, considering all the options, willing to weed some out, wanting to broaden the conversation to include the unwanted "what-if nothing else works?" topic.
Can you trust them to know the cancer and treatment territories?
Can you lean into their expertise?
Can you expand your perspective to include all possibilities, so you can then focus on your best-case scenario?
You've often written that you've felt you've had to carry the hard news for Dani. That makes sense. You are her mom! You've been watching out for her her whole life long! And her cancer journey is arduous, unrelenting, heart-rending.
Surely, you can look at the possible dangers ahead and consider strategies with her treatment team, even if you don't want the possible outcome?
Please take what you like and leave the rest.
I'm really speaking to my younger self - asking her to open her eyes, mind and heart to all possibilities, so she could then focus on her best case scenario.
Sending much love for you and everyone, Stephanie
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Mom, I also just wanted to say that Dani is lucky to have you. I have been dealing with BC for a decade, since I was 30, and my Mom couldn't tell you much detail about my diagnosis, treatments and prognosis. My Mom recently asked if it was good that the cancer was in my liver because the liver rids the body of toxins (and in her reasoning, cancer). She was thinking my body was sweeping all the cancer to my liver for removal. She just doesn't get how cancer works.
It makes me sad sometimes. She is a wonderful, loving Mom but just doesn't have that interest in understanding the situation in detail. It is hard for me to understand because if I were a parent with a child with cancer, I try to be more like you - trying to understand everything and do everything I can to help.
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ShetlandPony:
Jul 9, 2016 09:33PM ShetlandPony wrote:
"Retz, for what target gene alteration was Ibrance noted on your Foundation One report?"
I finally printed out some of the report so I could answer your ?
Genomic Alterations Detected: CCND1 amplification - equivocal
FDA approved therapies: Palbociclib
Gene and Alteration: CCND1 encodes cyclin D1, a binding partner of the kinases CDK4 and CDK6 that
regulate Rb activity and cell cycle progression. Amplification of CCND1 may lead to excessive
proliferation 39,40. CCND1 amplification has been positively correlated with overexpression of cyclin D141.
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As I approach another scan in two weeks it is very comforting to here that even with progression there is still hope for effective Tx for liver mets. Thanks JFL, Hole and kaayborg. I need reminding so often. Holeinone, I have to agree I am very glad it is not one of my daughters at least. I coould not handle seeing a younger daughter have to deal with this. Momallthetime, the extra burden of that has to be almost unbearable. I'm so sorry for all you are going through.
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artist, I had my first Flasodex shots 12 days ago. I have extreme edema in my feet, ankles, calfs & thighs. If I stay in bed all day, and keep them elevated, not as bad. Can't stay in bed all day, every day. I see my MO tomorrow. She might be grumpy with me for not coming in sooner. I just keep thinking it would go away on its own. Any suggestions ? Have you experienced the with Flasodex?
Kayborg, beautiful photo of your 3 DD. I love the braids. What fun & good ages right now
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Hi everyone,
I haven't posted for awhile, as I've been trying to live a bit and stay distracted while I'm on this easy Tamoxifen protocol. After several months of Xeloda and a relatively stable scan, my onc took me off the chemo and put me on Tamoxifen, as I'd never tried, even at early stage. I've been a bit nervous these months, partly because Tamox is so easy that it's hard to believe it would do anything. After my successful three years on FAslodex, and my several months of Xeloda, I feel like I'm taking a sugar pill. Not only have my peeling hands and feet completely healed, I have great energy!
So I went into my scan last week figuring I'd have progression, as my tumor markers are going up, but hoping I could delay another round of chemo until after my daughter's wedding in September. Just got my results from the Lab, as I always do before I see the doc, and I'm kind of happy! The largest liver lesion has reduced in size by 4-5 mm, and my bones in the area are stable. There are a couple of other smaller liver lesions- less than a cm, that have increased slightly in size. But nothing seems wildly out of control. So, while not perfect, it seems ok to me, for now.
I think when I see the doc tomorrow he will let me stay on the Tamoxifen for another three months, at least. I'd be surprised if he wants me back on chemo yet, because he's big into quality of life and nothing seems out of control. So, Yay for me! I don't think I'll have to go to my daughter's wedding in the middle of chemo! At least that's what I'm counting on. He may be more concerned about my markers than I am, but we'll see. I'll share what he says tomorrow.
So glad to hear so many here are doing well.
Hugs to all.
Sandilee
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Great news, Sandilee! So glad you've been feeling well and are seeing good results. Enjoy your daughter's wedding!
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Holeinone, the Faslodex does the same to me. Swelling from the thighs down, as well as my abdomen. My onc gave me a script for a diuretic to take after each injection. I haven't tried it yet.My next injection is Friday.
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Mel26,
Thank-you for the response. I wondered about diuretics. Last time my feet swelled, she had me get an ultra sound, looking for blood clots.
Should of got in there a week ago, tired of all the appts.
Sandilee, great news ! I will be lots more fun, if you are not being poisioned at the same time
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Holeinone, I never did get any of those symptoms on Faslodex. the worst thing I ever got was that my sciatica nerve got hit once and my whole side from hip to ankle had a painful twinging nerve. I could hardly walk. Otherwise that med was a walk in the park for me. I was sorry to have to switch. What you are experiencing sounds miserable. I hope diuretics like Mel says, does the trick. I know what you mean about your Onc getting grumpy. Sometimes it seems damned if you do, damned if you don't.....LOL! And we all get sooooo tired of appointments.
Sandilee, that is great news! Seeing the bigger tumors shrink is always good news. Very exciting about your daughter's wedding! I long for that day as well as a few grandkids. I hope it is a beautiful day for all!
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hi everyone. Last month zarovka created a new thread in the stage 4 forums titled how many are we 2016. Z is attempting to count the number of metsters posting or lurking on our stage 4 threads. We are both thinking that possibly folks have missed that thread because they are only responding to threads marked as their favorites. If you don't mind bumping over to that thread if you have not already done so it would be much appreciated.
Thank you so very much, Mary Anne
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Hi ladies,
I haven't been on here in a while, but I quickly failed Xeloda after 3 cycles, I showed progression in my liver and lungs (a lot) and now I started Gemzar/Carboplatin. I go for a second opinion tomorrow and also Sloan Kettering September 1st. I do home the Gemzar/Carboplatin will slow down this cancer, right now not really sure. Anyone have any good stories about this chemo? Also hoping to get into a clinical trial next if able at MSKCC- maybe immunotherapy? I've done Foundation One testing already. Oh- question- how do I get the liver biopsy slides to Memorial Sloan Kettering? They asked for them and I haven't a clue how to get them there from where my biopsy was done (my local hospital). Thanks!!
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Hi cjanet, I knew I hadn't seen your name in awhile. I'm so sorry to hear about your rapid progresssion and that the Xeloda failed you. Such a stressful time I know. I'm afraid I haven't had experience with these drugs yet but just wanted to lend my support and say I'm thinking about you. I'm saying a prayer that the next round Carbo/Gem is the perfect combo for you and it kicks this cancers butt. Hang in there and please keep checking in so we know how you are doing....hugs
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Hi cjJanet,
Sorry to hear about your disease progression and that Xeloda failed you (you didn't fail it!).
Let's hope MSKCC has some life-saving and life-enhancing treatments to offer you.
re. requesting medical records. Call your local hospital and ask for the records department. Ask them their procedure for releasing records - is it directly to you, the patient, or to MSKCC? If the former, there may be a hefty cost (think $1+ per page), if to another institution, usually no fee to the patient.
There may be forms to sign in-person or via faxed form.
And you may need to hand carry the records to MSKCC.
Another option is to talk with the nurse-navigator or administrative assistant at MSKCC. They may need you to sign a different form so they can request your records from your local hospital & practitioners. It would be great if they could do the work and save you time and maybe money too.
And it would no doubt be helpful for everyone if you have institution and department names, contact persons' names, phone and fax numbers, so you can get the right folks connected with the right information.
Some of the smaller institutions might not be "in the system" for ordering records.
Remember, patients come from around the world to consult world-class experts - they often come bearing stacks of medical records, x-ray exams, imaging CDs and briefcases full of briefing materials.
It's good you're gathering these now. You don't want to waste your appointment time due to incomplete records. And, hopefully, MSKCC second opinion consults begin before you arrive - that the doctors review your records before your physical exam.
And I hope someone else chimes in, as there seems to be great variation for releasing and requesting medical records.
healing regards, Stephanie
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Great news sandilee! Overall health and quality of life improves outcomes.
I sometimes feel reading this thread that the women here are too tough and too ready to slog it through terrible side effects. Serious side effects means ... serious side effects and not that a drug is working.
>Z<
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CJanet, I am sorry to hear about Xeloda. I hope your new combo stabilizes your cancer progression. I had my biopsy sample from my original mastectomy sent across the country for a second opinion. I contacted my cancer center and they were able to send it for me and with no hassle for me. I believe I just had to sign a request for the records to be sent. Like Stephanie mentioned, I believe I was referred to the records department to handle the transfer.
Sandilee, glad to hear Tamoxifen is working! Do you think you will ever take Xeloda again down the road? (I recall it was working for you but you just had terrible side effects with HFS. I haven't gone back to look at previous pages so if you already posted about this, I missed it.) Although I took Tamoxifen for 4.5 years, I plan to request it again at some point after I have exhausted other hormone therapies. I think there is a test to determine how well one metabolizes Tamoxifen related to the CYP2D6 enzyme.
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cjanet, i am so sorry for your progression , i haven't seen you post in a while. I failed xeloda too and very rapidly. I also did carbo gemzar ( before my status changed to her2+) carbo+gemzar is a good combination i got 20% redcution on my tumors , i did not progress during treatment but i did progress after three months . So if you are doing it now until you check with slaon keattering it may be a good option.
As for the biopsy slides. I simply requested the slides from the hospital where i made them plus all my records , they were given to me and i used them in two dofferent places , one in my country and the other was sent to germany. Usually they are well kept . It is your property not the hospital and it is whithin your right to request them. Of course i am not in the US so i am not sure about the rules. However i am sure of one thing they are your property.
Listen also to Stephanie what she posts is usually correct.
I hope you get a good advise from SK and that your next combo is successful. Keep us informed. Hugs.
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Cjet. Sorry that Xeloda failed you. You can ask the hospital that did the biopsy to send the slides. You'll probably have to sign a release before they'll do that. Just ask them what their protocol is for that. That's what I did before I went to MSKCC Who will you be seeing at MSKCC???? I love my MO there
Babs
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hi liver metsters, I haven't been on this site for a while. My liver mets have been stable for a while, thank goodness. Wish I could say that for other mets! After complaining about a lot of pain in my left leg a scan showed a 3" tumor on my iliac bone. My oncologist has taken me off Ixempra (it was obviously not doing much if that tumor was growing so fast) and has started me on arimidex again. I have been off hormonals for 5 years and my onc is hoping they may work again after the long break. I was hoping the Ixempra was going to be the drug that got me to NED. Oh well, I've been stage IV for 8 years and am just happy to be around to try new things! Plus having a break from chemo after 5 years is not an unwelcome thing.
Have been reading this thread frequently since I have it bookmarked as a favorite. So glad to see it is staying active. Always getting good advice here and of course I love the support you all give to each other. Sandilee, great news. So glad you will be able to enjoy your daughter's wedding.
Xeloda was one of those that failed me as well. I always have such high hopes but we are so fortunate that it seems they always come up with something else to try! Cjanet, Best wishes on getting into a trial!!
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Nice to see you Gator! I'm so glad to hear you remain stable but sorry the Iexmpra failed. I have heard that many Oncs believe that you can return to the AI's which is great. I hope the Arimidex get you to that elusive NED. 8 years and going strong is great. I think your attitude must have something to do with that. Here's to many, many more years and new meds! Scans for me on Tuesday and already starting to feel the nerves.....I will get the results the day before I return to work. Hope i don't have to call in "sick" the first day!
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Artist, will be thinking of you Tuesday and looking for your results! Hope, like you, there will be no need to call in sick your first day back at work! My next scan is sept. 1 so way too soon to worry
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Artist. Sending you positive mojo for Tuesday. Hope all is stable or better for you🙏
Gator- wow being stage IV for 8 years is anazing
Babs
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Hi ladies, sending good vibes your way. Gosh, 5 months in this liver mets rollercoaster. Your stories inject me with hope and motivation.
Last week's scan shows improvement with the navelbine/herceptin/perjeta combo. Funny I read here about the people that read / analyze the scans, someone described them as "lazy". This time they only reported on the largest tumor and said there was also improvement for the other ones but no measurements. This helped me put things into perspective...I have metastatic disease in my liver so why fixate if 3 or 4 spots, 1 or 1.5 cm, etc.
I should be super happy, plus I'm feeling great which is a blessing, but can't help to worry and wonder. Dr said we could stop at 6th round and stay on H/P but when I asked about staying on navelbine a little longer, going for 8 rounds, Dr said that was fine too. Scary why these decisions are pretty much up to me.
Again, thank you for sharing your experiences, it's good to know we are not alone!
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Artist - hang in there. it's good you feel the worry. if you are aware of it you can let it go. let's all ask the Spirit to take Artists worry and let her focus on those kids that need her.
I don't believe there is any way around worrying given what is at stake. I tend to not feel and then pass out during the procedure from subconscious terror. Better to feel it. Best to let the Spirit worry for you. Noone better equipped to deal with it.
Thinking of you.
>Z<
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Hi everyone, I have been on the boards for a little over a year. I was diagnosis stage IV right out of the gate with bone mets, so I have spent a lot of time on the Bone Mets thread. I was recently diagnosed with progression to my liver, so I am joining you here. I have read many of your posts, but I must confess that I haven't yet read all of them. There is a lot of good information here. I admire you all and look forward to learning from you. I know many of you from other threads, too. I had to leave Arimidex behind, and I am sad about that since I had virtually no side effects. Of course, it did fail me, so i guess the lack of SEs is not significant. I am moving on to Faslodex and Ibrance. Woohoo!
Lynne
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Hi everyone, It's been a difficult transition with the knowledge of much progression for Dani. I wanna read all the posts I missed because I wanna keep up with everyone.
But I just looked at the Portal and saw that Dani lost 10lbs in about 4 weeks. She is 5'0 was always very slim, bordering 100. She is now 87lbs. She is on Navelbine and Herceptin. The last Pet/Ct showed innumerable liver mets, I sent a message to Onco calling attention to it, but did not hear back. Should I be very alarmed. She is functioning the same, I noticed a bit of the loss when I look at her. But this info was on the Portal.
Could you tell me what I could do? Thanks so much
Lynne dear, yours was on the bottom, so I saw it first, welcome here, but so sorry we are sharing this.
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So I finally got to everyone. I am mainly now on this thread, and the brain mets one. Dani is being watched for one large lesion on the skull and innumerable "others". So, I am in constant guard, that this systemic tx works, so to get that particular lesion down also.
I am really concerned for her weight loss as I wrote above.
DancingVegg so sorry, it must be really tough to have all that xtra fluid. You get rid of the ascites on your own?
Holeinone I think they are trying the mildest chemo for her bcs of QOL, there is something to it, but I am concerned that maybe she needs something stronger. As I wrote just before, loosing 10lbs in 4 wks, weighing at 87 even for a small frame, it's really scary. I wonder if they are paying attention to it. I am quite freaked out.
Holeinone, if you are the type that likes to know, then why not look at the report yourself. I know many many people, including my sweet daughter, do not wanna deal with all the ugliness. It's too much.
Sandilee cheers for good news, it gives hope to everyone else.
Gramen I think you are the only other person that I know that is on Navelbine/Herceptin. Hope it works for Dani also.
JFL that's exactly how it is with Dani. She never got a break since mets dx. Constant progression. JFL, everyone is talking about Xeloda, and she is on Navelbine.
I know what you mean about no rads, that really makes me upset. And being that when she was dx with mets, she did have a status change, and being that none of the tx work for her, I do think she could have had a status change again. Everything, from the get go, was weird about her C thing. Just getting it at 25 with no history, and the aggressive progression, just awful.
JFL so how old are your kids now? So you had to wait to have the baby and then started tx? Dani's BC was found by her, while nursing her 3mos old. Gyno refused to send her for a mamo, he said she was too young to have BC! Yep, we went on our own to Rads place, payg privately, and the rest is history. I hear this stories over and over.
JFL yeah I know what you mean. People definitely have different relationships. And some ppl just can't deal with it. Part of me still does not believe it. But I really have no choice. She is extremely close with her sisters, and hubby is great, but she can't bring herself to talk about it at all with them. She really thinks that if she does not discuss it, they won't think about it, meanwhile, 24 hrs a day, I could tell you they only think about it. They are not moving away, bcs they wanna be nearby, and they are always available to help with the kids, when I have to be with her. They designed their work and fun around her needs. Actually, she prob knows about it, but there is no talk about it. Hugs to you sweetie, I know it's tough.
Babs thanks sweetie.
Kaayborg aww thank you so much. I see your girls, and I see Dani's. They look a bit like yours, also the 10yr old is much taller then the 8 yr old. You guys make me hope. Onco said it's possible to get rid of the tumor burden she has kinda of, she put the number at 60/70% ONLY! I am the one that asked, it's possible to get rid of it, then she gave me that answer. To tell you the truth she did not look very comfortable.
Artist thx for the support. Coming to this site, has been a true support for me. Who else could understand all the nuances. Here is for the hope that innumerable mets to the liver is just another bump!
Holeinone is it not from the liver not working properly? I know it happens sometimes. If you do take diuretics, keep in mind to be well hydrated.
Cristina so sorry Xeloda did not work. But great that you have this appointment. Who are you seeing over there?
Cristina I have to add if you are still looking for the slides, you could reach the Pathology Dept. and they usually send it directly to the other institution. You have to sign a paper releasing it, and they communicate directly with the other place. What I did, was I went personally to take it, and took responsibility for it, and took it to the other place, but you need to be able to travel back and forth, and it may be difficult for you. The same with the reports, if you sign a release hey send it electronically in no time to the other place. That was my experience. Good luck for you!
Hugs to all of you
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Hi Mom,
What a really difficult spell this is for all of you. How hard to be waiting for good news and keep getting bad news of ineffective treatments and cancer progression.
Like else everyone here, I really hope Dani wins the treatment lottery and gets one that gets her into remission or at least stable for a long time.
I can't address her treatment choices or personal medical situation (I'm not a medical professional, nor have any of us met her, but through you), yet I wonder if her weight loss is due to unwanted treatment effects. So many people lose their appetites, experience taste changes, suffer N&V (nausea & vomiting), get mouth sores, etc.. Cancer treatments can make it hard to eat and easy to lose weight.
It's worth talking about with the oncologist.
Yet, weight loss in advanced cancer can be caused by the disease itself - cachexia, anorexia, and liver failure contribute.
Weight and muscle loss is part of the advanced cancer profile. It's thought that cancer changes the body's metabolism to create what's called cachexia. Sometimes it's paired with anorexia (loss of appetite - not anorexia nervosa which is a psycho-physical syndrome). Sometimes it just happens, no matter how much or what quality of food you eat.
I have many liver mets and my liver has swollen to take over half my belly. In spite of being big around the middle, the rest of my body is becoming skin and bones, the "cancer look", due to cachexia. My body is experiencing muscle wasting and inability to process food, calories, protein, fat, etc. I'm now 100# and am 5'6" - so my BMI is less than Dani's.
Mom, I've done a LOT to keep on this much weight. Am lucky to still have an appetite, to find food appetizing and have healthy food habits. I'm constantly adjusting when, what and how much I eat. I don't eat junk food to put on weight, but I do eat frequent, small meals (even bites) of high protein and high fat food as my body desires. An extra pat of organic butter in soup, half & half instead of milk, organic full fat coconut milk, eggs, toasted pumpkin seeds, high quality organic olive oil. Organically grown and prepared everything (the liver doesn't need any extra toxins to process). Whatever I can take in.
But, here's the thing. It's not okay to force food on someone who can't eat or digest it.
With cachexia and me, no amount of food increases my weight. I'm just trying not to waste away. And I get to control what I eat and when - so I don't make myself sick to my stomach or overtax my poor liver. I know that my cachexia is a cancer-caused, whole body crisis. I am beyond the point of seeking new cancer treatments.
Dani isn't beyond hoping for treatment success. She's still willing to stay the course.
May she find treatment that resolves the causes of her weight loss. May she find nourishing, replenishing food pleasurable. May her body prevail and process food again.
Sending warm hugs for all of you. It sounds like many of Dani's loved ones are being scared alone and that's one of the scariest places to be.
May love melt fear, Stephanie
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Mom, Thank you for the welcome even though you know how much I wish I had no reason to be here. I am sorry to hear that Dani is still not responding to treatment as quickly or as well as we had hoped. As you know, I worry about you as much as I worry about Dani. She is so lucky to have you advocating for her. I just fear that you often do not take the time to take care of yourself. I wish I had an answer about the weight loss, but I do not. I wish I could wave a magic wand and cure all of us, but of course, I cannot. I will pray for you and Dani and also for the rest of your family.
(((Hugs)))
Lynne
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