How are people with liver mets doing?
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JFL. Good thing i did not flush all of my letrozole down the toilet. What you said makes much more sense than what I thought she said. Your explanation is what I have read here. So why did she say all that? Do i need to fire her? I'm so confused. I'd rather someone give me the straight story, like you did, than a read between the lines story that seems out of context with everything else ive heard or read.
I really didn't flush any of my pills. I'll start taking them again tonight.
We are going to Disney Alani and im not sure which island it is on. Can't wait for May 11.💞
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Hi ladies! Back from NYC with a good interview which looks promising for the new job in August! How did I do it with Stage 4 cancer? Flew with family, sat in a wheelchair at the airport, wore my wig and had professional makeup put on in my hotel the morning of the interview. The makeup artist made my brows look like I was 20! I am planning on microblading them this summer. Came home and got mani/pedi for swollen feet and started back on Madame X this morning. I am sorry to read progression for Kaayborg and others. WBR is really tough - as is all head radiation. I hated mine.
Lisa - I think doxil will be the bomb. Z - you are a force of nature - you have got this down. When will we see if A-train is working? Shetland joining you on x thread. Sending good CA sunshine vibes to all. Leaving for London vacay on 5/29.(()) C
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Grannax,
I strongly disagree with your MO. I am frighteningly resistant* to all the anti-hormonals, except for Faslodex, which gave me 12 months of PFS, and two extra months of watch and wait. These hormone inhibitors are not all the same. Faslodex is the only one in its class of Selective Estrogen Receptor Degraders. All the others are SERMS (Selective Estrogen Receptor Modifiers).
So please, get back to your MO and have her explain what she is on about. I am shocked that she believes they are all the same. Seriously, reeling.
I haven't had precision pathology run on my cancer, because that wasn't a thing six years ago when I was diagnosed, so I have no clinical hints as to what drug would work best for me. My MO just rides his hunches, and we play whack-a-mole with the cancer together.
* Tamoxifen sent my TMs from 800 to 3,000 in about a month. Femara/Ibrance sent me from bone only to liver mets in three months. I developed metastasis while on Arimidex, when I was originally diagnosed with Stage 4. So, I mean it when I say that anti-hormonals aren't my buddy - except for Faslodex, which sent my TMs plummeting after the very first dose, and kept me NEAD for 12 months. Man, I miss that drug. It was so easy. No SEs, and once a month dosing.
Have fun in Hawaii. Come back tanned, rested, and ready to get some answers out of that MO.
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Liwi garlic juice tastes just about as bad as the bitter melon stuff. Fenugreek you soak the seeds over night and drink the water strained in the morning.
Husband11 thank you so much for your info always learning. I will ask my onc about blood thinners for sure.
Sarah wow what an ordeal I’m so happy you got those procedures done when you needed it. I was on Xeloda as well but the feet and hand issues for me were horrible. Also major stomach issues and blurring vision. Can I ask a silly question what is a stint?
Z amazing as always
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grannax - I have to agree with what everyone else is saying...sort of. My Guardant test states that hormone therapy will not be effective on my cancer...letrazole and anastrazole (I had already failed both, so I was not surprised). However, Faslodex was supposed to be effective, according to the report. Unfortunately, Faslodex did nothing for my cancer either...nothing has worked for me yet. From what I read, my cancer is as aggressive, if not more aggressive than TNBC. This is because of the PR- status, the EGFR and ESR1 alterations.
I wouldn’t skip Faslodex without giving it a try. It works great for MANY.
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Thankyou everyone for your support and well wishes. I'm taking things super easy this weekend and enjoying the absence of medical visits. My stomach is super sore. I seem to react to meat so going veggie from now on.
Wendy: a stent is a small tube they put in to try and unblock the blockage. The ward doc said they may have to inflate the ducts to help get it in. They go in with a camera through your stomach. It's very much like what they put in for blocked arteries, in and around the heart. The GI doc did say it was a temp thing and if it works what to do for longer time, will find out more next week. My blockage was is in tubes inside the liver, I think often blockages are the at the junctions of the liver ànd bile ducts. (Not precise anatomy but that's how I understand it.) Will find out more next week from docs, and the blood test will show if it's being effective.
I did a search and found many people have had this procedure and it's been very successful for them, so I am taking confidence from their experiences. This site is so good to help calm ones fears.
I am loving hearing about all your trips, have fun. My plans, once I am feeling better, is to try to enjoy our new pool and yard, which was finished in the middle of March. Waiting 2 weeks for incisions to completely heal before going in.
Sara
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I just have this feeling my oncologist doesn't expect me to be around much longer. he told me cancer is slowly growing. abranxe didn't work and now I start doxil. Does there come a time when no chemos work? Since it is in my liver for almost a year now.......and I have never achieved NED....My cancer came back in 2013. I did fine the first 2 years, The American Cancer Society says only 22% make it past 5 years. i just feel blue. I feel like we all live in this "world" that nobody gets. He doesn't seem interested in me getting a liver biopsy to prove I am not HER2+ after all. That is a whole story in itself. I am going to the James in Columbus on Tuesday for a second opinion. I don't know. I just don't have much hope right now. Plus I have the flu.
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lisajo6, I go to the Spielman Breast Center at the James and I have been extremely happy. Hoping you find an MO that you can trust. Who are you seeing? I see Lustberg but have heard of goodreviews for many.
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Lisajo,
Prior to the consultation with the MO, make sure they have your MRIs , PET , CT's scans, doctor's notes and your most recent blood work as you want a complete assessment.
MRI's are better scans for the liver than CT's. An intervational radiologist at a NCI center is another possibility to assess your liver. There are many options for you , talk to your MO and express exactly how you feel, if you don't feel satisfied with the response, consider changing the MO. There are also meds to help relieve depression and there is nothing wrong in doing so.
Take care,
Hugs
-K
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Thank you. I am seeing a female oncologist that I consulted with two years ago. At the time she agreed with what my onc was doing. Fortunately I just had a cat scan, MRI if my head, and blood work done, so I will have everything in a folder for her. I am interested in finding out more about Y90. I just can't go down without a fight-but I am losing the will.
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Had no idea there were two more of you out there at OSU. I see Lustberg and love her as well. AMAZING! Lisa, I wish you the very best on your second opinion. Be very honest about how you are feeling and what you are thinking. The Spielman is chalk full of resources and solid research based practice as well as willing to go outside the box when in your best interest.
Grannax, that is the way to Hawaii. Enjoy every bit of beauty and the added touch of Disney magic. That is something to look forward to for sure.
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Two days into my third pre-chemo fast. Not a walk in the park, but gets easier each time as promised. I had a vague itch to go for a run today, that's how good I felt. However, my liver is still enlarged and not in agreement. Listening to the liver, of course. Liver feels like it is improving but we have a ways to go.
Still bloated with ascetites, but improving. It gives me some sense of control that I can reduce bloating with yoga. We've discussed how much I like/need control. In my case, there is a clear plumbing issue because of the yoga movements get the fluid to go wherever it needs to go. I have no idea where or how. I can get so into cancer details, but ascetites ... I just want them to go away. Following my intuition with backbends, inversions and twists.
I am reading everything. All I can do at the moment is cheer from the sidelines given my full plate. Having any sort of life on weekly chemo is a challenge. I've heard people work while doing chemo?!? Superwomen every one, IMO. Such an incredibly strong group, and even stronger together. Please post, and know people who understand read and care and admire and pray even when they cannot respond.
>Z<
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Z- You are so exceptional!! When will you get a scan to see how this is working? Once you get to stable, do you stay on this or can you move to something like Keytruda- abemaciclib, or anything else, to get a break?!
LALADY- Huzzah!! What are you doing interviewing for a new job?! Would you move to NYC? You gonna be NYCLADY?! Or will the clients come to you?! Like Z, you are big inspiration to me- what is microblading? I have next to no eyebrows left..
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PS And I really really need a vacation in London!! I saw Andrew Scott in Hamlet there last summer, probably the most amazing theater production I've ever seen.. Saw the mousetrap too, and shopped for Liberty of London fabrics, it was so much fun!!
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Cure-ious -
I had a baseline MRI a couple weeks ago. I can see scanning in 2-3 months. My CEA is pretty accurate. I don't feel the need for scans super soon unless that biomarker suddenly goes wonky. The first CEA blood test will be next week. However, going by how I feel, we'll see a response.
I've been a huge fan of low dose metronomic dosing. It's been on the short list for a long time. LDM is a low dose of chemo that you do pretty much as long as it works. I got the idea from discussions on a different board that this was only available from crazy doctors in far a way places. I was somewhat shocked to find that my local MO team prescribed .... LDM Abraxane (100mg/m2). It's an FDA standard now. Nothing special. They were inclined to go lower, due to the level of hepatic impairment. This freaked me out., We've pushed the dose back up to the FDA standard 'cause I have a lot of mets to take out. Basically, you watch the cancer, you watch the side effects, and you stay on the stuff as long as everything is managed and manageable. Lulubee, long term survivor extraordinaire, has been on Abraxane 15+ months. So that is one option.
MO was thinking 3-4 months and then switch to faslodex. He's not opposed to staying on Abraxane for longer, he's just surprised I would consider it. He's got patients on Abraxane for 2 years right now. But if the fasting works as I hope, I could be at this for a while. Reducing side effects is critical, but it's really the effect of fasting on the immune system that has me foregoing food for days. As you know, if it isn't immunotherapy, its not for me. The fasting potentially turns off the chemo attack on the immune system, and drives an immune response while the chemo disables that damn tumor micro-environment.
The issue with switching to Faslodex as onc proposes is that I doubt I am still responding to hormone suppression. I need a better plan for maintenance than faslodex or at least faslodex alone. I've got my eye on viral therapies... if i am stable and one of those trials opens up, I am going for it. Most of the good ones closed very quickly. Mayo has some good ones, they closed in weeks. Right now the only one that is open and makes the cut is in Japan. I could arrange it through my doctor there, but the travel is an issue right now. I watch the oncolytics space and it is MOVING. There will be new trials.
LALady, you and I will be micro-blading our eyebrows together I am sure. I am going through incredible hoops to keep my hair, but the eyebrows are unlikely to make it to summer.
>Z<
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When I read through these posts I am filled with sadness and great admiration for all you brave brave women. This is such a hard road, yet your "courage under fire" is so inspiring. I had an interesting week... My CT scan a few weeks ago looked good for the liver, but they did pick up a swollen lymph node under the right arm, which was biopsied, and found free from cancer because I had reconstructive surgery done 6 weeks ago. What was weird during the biopsy was the comment made by the radiologist, she had a look at my liver scan and expressed her own doubts on whether that spot was malignant...sigh. Here in Cape Town I have a panel of about 20 specialists that look at my case every so often, and at the moment my RO feels that I can benefit tremendously from resection because it is only a single small met, whereas my breast surgeon is not comfortable with it possibly because of his own doubts whether it is malignant at all. They feel the spot is too small for a biopsy. They will do another MRI of the liver, and the panel will discuss it again. If they decide a resection is appropriate, then a liver surgeon will operate on me in a month or so I guess. Just wanted to update anyone that might be interested.
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How do I even start? I missed you guys insanely. I had to go back and read the few weeks i was out, because i had to see how ya'll doing. Waving to the new gals in this group. Miao you sure established yourself here with all your knowledge.
Z i honestly cannot believe all the hardship you are going through. Right off the bat i could tell you, people keep telling me how strong i Am, i tell them, not really, prick me you'll see i bleed just like you. Geez, i got no choice, we got no choice, you just keep going. No one asked me, like Lita's bio says, she was forced into this marriage. You are a normal Human being, you do push yourself to the limits, but you have your worries and fears. I sure hope to be able to walk with you through this time. You are working so hard, everyone here is working so hard just to get these knuckleheads of docs to see everyone as Human beings, and not just statistics. No way i could fast as you do, this monster better be scared of you. I could tell you that Dani was given Lasix (diuretic) it's suppose to help, it may...
Kayborg what a punch. Yeah this bloatnes and then the brain thing, it's too much. Are you going to the Brain thread also? I have to go there too one of these days. Prayers for you.
Kaylynne just don't know what to say to you about this running around. But glad you found something that is concrete. I did think that IR's would not be bothered with the amount of tumors in the liver itself. I'm confused about that, on the opposite, if it's not enough they usually don't wanna waste it because they don't want to have it done too many times. What you wrote on the last sentences about not wanting to die, having too many things to do...all those words were as if i was hearing Dani speak. She was sooo busy.
Artist, i was just sick when I heard about this pure soul gone to heaven. Do you know she was one of you wonderful ladies that reached out to me after Dani's passing? ugggghhh that is so painful. I'm thankful for having you in my circle,Artist. Too soon.
Lalady we all put on masks, so you did good.
Lisa don't let them give you a deadline, let's see what you get from the 2nd opinion, also, Dani went thru double the treatments you got, so...
I know i didn't even scratch the surface in reaching out to all of you, sorry
I am up to date now, so i'll be able to try and give some help. I'll update the thread about Dani.
Love you all, as so many ladies have said it over and over, you guys kept my sanity and your support after...it's just a real force of character on your part. With tears in my eyes I cannot thank you enough.
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Mom, Mom, Mom! I am so happy to hear from you. I have missed your words, your thoughts, your sincerity. I often wonder how you are coping, how your sweet grandchildren are managing, how your new world is treating you. I hope all your wonderful memories of Dani are helping you see the happiness that still awaits you in this world. She was a gift, just as you are. Thank you for thinking of us.
Hugs and prayers from, Lynne
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Hi Lynne thank you so much, you know you guys carried me, could not have done it alone. She was a true gift. I posted about the girls and our life on the other thread for Dani. We are kinda going about the details of every day, but not.
Shetland what an advocate you are. It's insane the amount of energy a person can have to be able to take care of everyone around them and then some. Hope things settle soon.
Liwi so sorry you had to deal with such a scare. But the question is still, why did he fall no? If the bleed was from trauma, but he fell, what happened?
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Momma- My dad died unexpectedly when I was 13, so I feel like I kinda know what Dani's girls are likely dealing with. I couldn't talk about it to anyone for several years, I just ran away inside. And I very much lost my own concern about my future, just rocked around day to day. Whenever anything good or new happened in my life, he was the first one my thoughts turned to, what would he have thought? Wouldn't he have been surprised my life turned in that direction, or how proud of me he would have been. Only getting married and having my own family to care for somewhat took me out of that shell, but of course he won't ever be forgotten. I'm glad you have the strength to hold onto and care for them, with your own grieving to do.
Z- thinking of you today on chemo-day!! I didn't realize this is lower dosage, its wild to think that one can keep with a chemo regimen for a long time. The chemo could change up your cancer and let you go back to anti-hormonals, but I were to take Faslodex I'd still want to add on something else, at least Ibrance. If you move away you can come back to the chemo later, rather than waiting for the cancer to resist, but I have seen no data, if they exist, on whether it is better to alternate treatments or finish one through then move on. I guess quality of life makes that call for you! And if you knew up front you could get at least two years on this treatment, and its tolerable, oh why not?!! Do you take it once every week, until progression, or do they give you breaks?!?
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Mom it is so good to hear from you. I think often of you, Dani’s girls and all your family.
Thanks for asking about my husband. They told us that they really aren’t sure whether the trauma was due to the fall or if he fell because it was hurt earlier. He remembered afterwards that he had hit his head pretty hard against a tree branch earlier in the week, something I would have thought was crazy if I hadn’t done it once myself several years ago when I was walking looking at the ground. So it could have been that injury. We were very fortunate as to where it happened in the brain as he does not have any apparent damage.
Daywalker it’s good that you have so many specialists looking at your case but I imagine it’s somewhat confusing and frustrating when there are two conflicting opinions.
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Cure-ious - I already was a NYlady, this gig is in West LA so still LAlady.
But willpower and professional makeup got me through the 2nd interview. I want those eyebrows back so badly, I'm planning microblading in June. Back on x with some rib pain yesterday (hope its a rib not a kidney). I had to wait 2 hours for a pain shot to be approved while I was getting fluids at the hospital because my PA is not licensed to order meds, nor is my RO (surprise and weird) - just my busy onc who was seeing other patients. sigh Feeling a little better today, but working from home and resting. Momatt - nice to hear from you. Liwi - sorry about your DH. Kayborg - I am sending you strong thoughts to get through the WBR. Head rads are a bitch. I still haven't gained the 14 pounds I lost back from mine. sigh(()) Claire in cali
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I met with my MO and trial team yesterday to review the results of my surveillance scans (bone scan, ct scans of chest, abdomen and pelvis) and I am happy to report that my bones and liver are stable. No new lesions in bones or liver. A slight 10% decrease in one of my liver mets. Not much but it's in the right direction.
I always feel bad reporting good news on my scans especially since we've had such a spate of rough patches with many of our MBC sisters. I read the threads daily and am cheering everyone on who has good news and supporting those who are struggling. You are all in my thoughts every day. My husband wishes I wouldn't read so much. It is hard to explain to him so I try not get emotional in front of him when we've lost someone. It's always a kick in the gut and a reality check.
(((Hugs))) and love to you all.
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Z i hope you are coming along, what a life lesson you giving these girls. Kudos to you.
AnimalCrackers you hear the applause. It's all yours. I've learned over here, everyone is thrilled for those that are doing ok, and it gives hope also. Thanks for sharing.
Curi-ious this is what it's all about. IN SPITE of all the misery, the hardship you blossom. So sorry for your loss at such a tender age. And how beautiful that you had that type of relationship. I've now kind of modified my reading material, loosing a parent is always hard. Losing someone you love is always hard. I wrote more on the girls on Dani's thread.
https://www.bbc.com/news/health-43659760 What to make of it? Are they saying so there would not be a Breast specialist or a Lung specialist but just MD types? If it's so, I'm not sure how happy docs will be about that.
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MOM— thank you for posting that article...I think everyone would benefit from a reclassification of cancers and related therapies, since what they're doing now doesnt reallly work and they don't even understand why. This new found knowledge could result in more appropriate medications available to more patients based on the cancer type instead of location.
Our current cancers treatments remind of the parable of the elephant, where everyone is so close they believe onlywhat they can touch. So for some the elephant is a leg, for others is the nose, or the tail...but only the wise from a proper distance can see the elephant in its entirety....
May researchers, big pharma, the FDA, and our doctors finally transcend decades of utter ignorance, and poisonous therapies, and get giggy with it!
AnimalCrackers your good news are quite a bit of relief after reading of so much progressions with some of our members. It gives me hope!
I'm dreading going for my monthly check up on Monday and finding out that my cancer markers have not changed, since on top of it i'm suffering from so many of afinitor's SE
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Cure-ious The standard Abraxane weekly regime is 100mg/m2 3 weeks out of 4 as opposed to 270mg/m2 every three weeks? Maybe 4. In any case, the hope is that this becomes a lifestyle. We'll see. My liver is freaking me out by being very symptomatic today. I do hope its a massive battle between Abraxane and The Mets.
My face and the back of my hands are red and getting redder. I am hoping it is sun sensitivity, which is to be expected even with low levels of liver drama. I am getting outside for a couple hours per day and the sun is getting stronger here in NM as summer approaches. Dr. Google says that liver disasters causes red palms not red on the back of the hands. As you can see, I am freaking out over every detail.
I haven't been able to use sunscreen since very early on in my disease when I developed an crazy response to sunscreen. Someday I may post a picture of my face that shows how that sunscreen situation worked out. I try to protect my privacy, but no one would recognize me from that photo. I was in Costa Rica, outside all day, dousing myself with sunscreen. The swelling was unbelievable.
AnimalCrackers - I am THRILLED to read about your success on your trial as is everybody. We're all looking for that treatment that works and knowing that they are out there lifts everyone's spirits. And I am thrilled for you. I am so glad you had good diagnostics. Thank you for posting.
Scwilly - I have a half written unsent response to your description of your ordeal. I can't keep up and I increasingly let other people express my thoughts. I just want you have been in my thoughts every day. I hope you are okay but whatever is going on I would love an update.
Thanks everyone for your thoughts. Can't keep up with providing appropriate thank yous for the waves of kindness but they are much needed and much appreciated at this time.
>Z<
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LA, glad all went well in NYC with your interview. Again, you are a rock star! Would so love a professional makeup artist. Great idea.
Animalcrackers, congrats on the good scan results! Please do not feel guilty. We need some happy news around here and other people's successes give the rest of us some hope.
I contacted MSKCC today regarding an HER2 status testing trial that someone on these boards told me about - the trial doctor believes HER2+ is way under diagnosed and is evaluating diagnosing HER2+ via herceptin uptake as shown on a PET scan. The requirement to enter the trial is that the patient be previously diagnosed as HER2 negative. I called several days ago and was bounced around from the receptionist in his office, to the clinical trials department and disconnected along the way. Today, I found another number for him and I reached someone in the interventional radiology department. She took down my info and within a few hours, the trial doctor himself called me back. I missed the call but am very excited to call back tomorrow. Keeping fingers crossed I qualify for this one. Still fervently believe HER2 drugs will help me.
I just had my second dose of Doxil and am 2 weeks out from Y90. My liver has started to hurt, which it usually does when I start a new medicine that is working. I hope that is the case here! My liver enzymes and tumor markers are all within normal range as of Friday although up ever so slightly. My liver also hurts when I progress but usually feels a bit larger in that case. Right now, my liver feels on the smaller side for me - no pressure when I slouch over and I feel like I can suck in my rib cage more than usual. It seems the back of my rib cage is over expanded due to liver mets but not the front. Please be my magic bullet!
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Mom and Miao, I also view it as a potential step in the right direction that cancers may be reclassified based on their characteristics, regardless of origin. Even categorizing BC by molecular type into luminal A, luminal B, triple negative/basal-like and HER2 has been an improvement in understanding how each type works and why there can be a vast difference in response rates/prognosis within, for example, ER+ BC between luminal A and luminal B. When I was originally diagnosed in 2006, these categories didn't exist. It always bothers me that so many cancer treatments are arbitrarily approved for certain indications when they would likely work for so many other indications, cancers or subtypes. It is all about $ at the end of the day. All research is siloed and competitive and no one is looking for a universal cure - only to prove their particular clinical trial is a success.
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JFL—thank you for sharing so many good news! It's alway a joy to read the details of when a therapy is working, I hope my tumor markers return to a normal range one day!
I wish you lots of luck on getting on that clinical trial at MSKCC, may you experience the best outcome!
And yes, I agree that doctors and hospitals should start sharing knowledge and cooperate toward the goal of finding cures, instead of working in isolation....
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JFL - In Japan I had a test of HER2+ protein in plasma and it was really high. In Japan I would be HER2+ based on serum levels even though my biopsies have been negative. It's normal for HER2+ to be in serum, so where else could it be coming from? We don't do the serum test here.
Separately, my new (awesome) onc did a deep deep dive into my medical records and noticed a note from the Mayo Clinic that I am HER2+ equivocal, not negative. That sent us diving further into old biopsies. Mayo was not exactly correct, but still very interesting. My early biopsy was HER2 1+, which is technically negative, but MO's trying to figure out if we can get insurance coverage for herceptin with that ambiguous diagnostic result. I guess he too believes HER2+ cancer is under diagnosed and Herceptin should be more widely used.
But it was a really unexpected turn in the conversation. I almost fell off the chair when he seemed to imply that he would pull me off Abraxane for one of the HER2+ treatments if we can get insurance approval based on that early biopsy. I have a lot of question about this treatment plan but very pleased to have another excellent option in the standard of care.
Apparently insurance will pay for Herceptin if we can convince them I am HER2+ equivocal. Technically that would be staining of 2+, but he wants to push the issue. If that doesn't work, he's talking about another biopsy. I am excited by his excitement but at the same time, I feel that given the number of mets I have and the heterogeneity of tumors that it's a crapshoot to hit one that will stain HER2+. I am not a lover of biopsies.
In a nutshell, I will fly to MSKCC in a minute for that trial and I am on the edge of seat. Please keep reporting.
Doxil signs are very promising. Looking good!
The stuff I learn from you guys. Unbelievable. Many of us are going to look back at these conversations years from now and say wow that lady who I only know by a username saved my life.
Thank you, every single one.
>Z<
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