How are people with liver mets doing?
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Grannax - You do TACE/Y90 instead of IV chemo. TACE/Y90 is far more targetted, if the liver is the problem, and far more effective. The normal response to TACE (or Y90) is an exceptional response to IV chemo. It would be redundant to do both. The way I see it I would do TACE to avoid IV chemo.
Babs - The first sign of liver stress, for me, are welts on my skin that do not heal. I deal with those by going to the sauna/steam room daily. The welts slowly go away if I keep at it for weeks. I believe the sweating reduces the work the liver has to do. At the moment I have 20% liver involvement (AHHH!!!) and no other symptoms from the liver. Now that you are beginning to be symptomatic, I strongly encourage you to focus on self care until you have these symptoms managed. Exercise, diet, massage, sauna, tweaking meds and pain killers. We're full of ideas of what has worked for us, but it's still a full time job to figure out your own path through this.
You can manage the symptoms with some effort and it is very important ...
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Grannax I had rads to T1 and L1 because a met was resting on my nerve causing the numbness. The pain in my rt shoulder blade and shoulder is new. as is the rt lower stomach pain and rt hip pai. Ugh!
Babs
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Babs. That right shoulder blade and shoulder are probably referred pain from liver. At least, that's what my IR told me. I don't know what to think about the other new pain.
Z. I wasn't asking for myself. I agree, it does seem redundant. It's my friend, she's been having chemoembolization to liver mets. Now, she has mets in lung and bone, I heard that her MO said she needs to do IV chemotherapy. But, her family thinks she will continue to have chemoembolozation, too. ( This is my best friend's niece who has Metastatic Ocular Melanoma). There's not much communication in medical terms, so my BFF is always asking me stuff. It's been frustrating to try to piece it together by guessing.
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Nina. How are you doing?
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Thanks Z. I will do exactly that. Very good advice. I live near the Univ. of PA, so a good second opinion is closeby
I hope you and all of the ladies on this thread know how valuable sharing your experiences are to so many of us. I often wonder what women with MBC did before the internet?
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grannax- Typically you would just do IV chemo to control mets in lungs and liver but i am sure it depends on the details. You could do systemic oral chemo with TACE/Y90 when have mets elsewhere. Dani is actually an example. I think they are trying to improve/preserve liver function so she cane metabolize systemic drugs to treat mets elsewhere.
Or so I understand based on one hour discussion with an IR. You are the expert here.
Z
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JFL - There is a woman on Inspire (Laura/Benton City) who sees a doctor in Seattle named Dr. Ben Chue for metronomic low dos chemo. I mention him because he is a heavyweight in cancer treatment and not a fringe/alternative practitioner despite the fact that he operates outside the box, relative to the FDA standard of care. I believe he was on the advisory panel for the cancer moonshot if he did not run it for some period. Dr. Chue is on my list if I choose to do metronomic low dose chemo. Metronomic Low Dose chemo is an awesome option and I would love to do it in combination with local hyperthermia.
Laura is offline dealing with some illness at the moment but she is 71 and battling cancer for 16 years. We should all be so lucky.
>Z<
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babs, yes having ILC is very scary to me because it is not as common, there don't seem to be as many treatments and we tend to get ascites which is very difficult to manage. Keep an eye on the bloating and crampy stomach.....Still waiting for the Specialty Pharmacy to send my Xeloda and am getting anxious as I've been off treatment for 3+ weeks now and had to have another para treatment. I also get right shoulder sharp pain. Some days it aches all day and today nothing.
Z, Interesting discussion about TACE and the possibility of 2nd line treatment. It would be nice to save Xeloda for down the road. I hope that Onc gets your biopsy questions answered ASAP!
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Thanks, Z. If I find out more information on what TX friend is having, I'll post. They are very private and shy away from medical words.......I really don't get that.
Tomorrow is a big day for you, praying. Z
Artistatheart. Hope TX gets to you really soon. I know it's scary to be off TX for 3 weeks.
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Zar, reading what you have to go through to get to the doc hits a real sore point. These docs should NOT be able to get away with it w/t any impunity, really there should be a nono. Zar, IR was so excited that he could give this tx to Dani. So, are you doing it? The Y90 is ont chemo but a good healthy dose of radiation with the spheres. Gotta stay away from your pets (you should ask for how long) kids is best about 3 days, so we arranged it for her to have her 2 visits done at the end of the week, so my daughters slept there one night and the the other days being the weekend they came to us. She hates to be away from them. Even from hubby it's advisable not to get close at least 24 hrs.
JFL I cannot hit any of the adjectives you had for the MO's, the last one was interested in her career. Period. There was NO communication, as you all could remember, she decided after a long time in what direction to go, no matter how many times we asked to be part of the equation, I don't care if she had a good heart, no meaness intended, empathy yes, but she was too busy traveling the World for academia to care about one soul.
I will ask IR again, but from our past visit, he thinks TACE is harder on the body. After the mapping with the angio,Zar yes they put it through the femoral vein I think it's called. I would caution everyone, to have it done only at a place that you know does this a lot, after the procedure and the mapping they do a SPECT some type of nuclear medicine scan to make sure that they saw what they saw and it's not gonna go to a non targeted area. The more I read the more I see how it's advisable to do it. Also, from what I understood from the IR is that if the liver is less burdened of malignant lesions, the whole body could function and react to tx better. Dani has innumerable hypodense lesions, some of them were conjugated blah blah, he felt it as very urgent in her case.
I do have to tell you that her enzymes AST/ALT/ALP are better!! I don't know if that means it will stay like this, but there was a drop of a few hundred.!!! It's very exciting, just a real pitty that she is loosing weight because of the rads to the Cspine area, to the mandibular etc..and she cannot swallow, Ziz she wants to eat, she just can't swallow. she's been on Carvel icecream but even water is hard. If it's not one thing is another. SO of course her hgb is low, potassium etc...because now there is some malnutriton. You know she had the idea for them to hook it up to so me IV Glucose, while she was doing the procedure for mapping and that brought up the hgb levels a bit.
Babs did you get stuff for the constipation? You think the bloating is only from constipation? Those pain in the right side could be a nerve hitting the wrong muscle.It could be pain from the liver or a pain coming from the neck area. In the C level, just saying. It's terrible to know that you are in pain now.
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Mom - I am excited to hear about Dani's AST/ALT/ALP dropping. I've started monitoring mine closely. They are an indicator of bone disease as well as liver function. I have some data I will post. It is interesting stuff.
I am investigating TACE/Y90 just in case things take a wrong turn. Given the extent of the liver mets it seemed prudent to know what my options are. I had expected to travel to do TACE; however, I found that the radiologist who read my November scans is an IR who does TACE. If I can do TACE locally it lowers the bar considerably so I though I would have a consultation. Given my experience with the local medical community, I was very surprised to be impressed with the guy. Now I know I can get TACE at the local hospital and that's a very important piece of information. Y90 is also available here but not by this guy. I am still studying the differences.
That said, for the moment, I have nothing but positive news regarding my response to treatment from Japan. However, it takes time to see the effect and, of course, measure it. I have to be ready for anything, as we all do.
>Z<
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Momall. Im so happy danis liver functions have improved so much! There’s a great dr in the city who does IV drips for all conditions. Maybe you want her contact info?
I’m not sure what the pain and swelling is from. I wrote to my MO to ask if someone can see me on Tuesday after my scans. I just don’t want it to be ascites that doesn’t get addressed especially with my leaving Wednesday night! I have been taking stuff for the constipation. Not to be gross but I’ve taken a small poop today. I went regularly while on the GDC0077 so maybe that will get better when I start back on it tomorrow?
Babs
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Momall, So great to hear Dani's liver enzymes are coming down!!! When I had Proton Therapy to my chest and neck, I could not swallow anything and it felt like you were swallowing glass pieces. I lived on Ice Cream and Carnation Instant Breakfast. You should get her to try it. It tastes good and has a lot of nutrition. Tell her to use a straw....it will help a lot.
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mom. After rads to the C spine and surgery to C spine, I couldn't swallow. Steroids finally helped reduce the swelling. For a while, I had to use suction because I couldn't even swallow saliva. It was traumatic for me. But, I was able, finally, to eat soft food. I even ate baby food. Water was the hardest thing. They have a thickening product to mix in with some foods. It's kinda yucky but helps with swallowing. I hope she can get some nutrients down and stop losing weight. 💗. I forgot to say this was back in 2000. I had mets to C 3. The surgery was to remove C 3 and neurosurgeon put in a bunch of screws and titanium so that my head wouldn't fall off. LOL. After that was healed I took Taxotere x 6. My bone Mets never came back.
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Hello beautifuls,
I am sorry I haven’t been able to keep up with conversation. You are all so informed and clued up, I try to be but doesn’t always work.
I have been in hospital since Wednesday and have had the bile duct stent put in, feeling so much better. I can actually keep small amounts of food down. I have the kidney stent tomorrow to help with that then I can start new chemo on Friday.
I am going on navelbine and taxotere weekly, has anyone had this combo?
Lots of lov
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Nina - It is very nice to hear from you. I am so pleased to here these critical ducts are opening up and you are eating, although I can't imagine the procedures are pleasant. I haven't been on those chemos but they are very effective and will make short work of this business.
All - Had my biopsy at 10am today. I asked to talk to IR before procedure to understand which target she is choosing, samples and sample handling. She came in all "in control" saying she had talked to my onc last week (this absolutely did not happen) and discussed targets and samples and everything was in order. Upon further discussion, nothing was in order, of course.
I asked her if she knew I had had an MRI on Friday (she did not)... She needed to look at the MRI to make sure she hit one of the tumors with ring enhancement. There aren't many. Those are the only ones absorbing contrast and alive and therefore useful for a biopsy. She did not know I needed 4-6 cores (no notes on the order) ... IR was going to take 2-3... IR had no idea biopsy was for genetic testing. IR did not know the tissues needed to go to the pathology lab before they go to Caris because we're evaluating for lymphocyte enhancement. Normally they send them directly to Caris. Had to sort everything out from the ultrasound table.
After this enlightening conversation IR said: "usually knowledgeable patients are not calm ... it is very strange how calm your are." I laughed to myself but instead complemented the team on their reputation for competence and said I knew I was in good hands.
I got an email from wildplaces (Stage III but monitors this forum) with advice before this biopsy. She is a medical practitioner. She reminded me to project calm and confidence in the team. "A cool patient who does not move/talk much and does not over complicate things is likely to be biopsied more (human factor) then someone who looks like they are about to jump off the table." Thanks wildplaces for all your advice. It seems everything when well. I still have to call the pathology lab tomorrow and make sure the sample get's off properly.
I felt pretty good leaving the clinic but I've started feeling the wound tonight. I am following directions for once and taking it easy. Still biopsy was not hard.
The one other piece of advice I have for people going into a biopsy is to bring your own food to eat once you come out of sedation. Otherwise your options are likely going to be a juice pack and a granola bar. I had fantastic egg salad sandwich and fruit salad and probiotic beverage waiting for me when I got out of the procedure. It was the best sandwich ever. Because of the sedation, the procedure generally requires fasting.
>Z<
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Nina this is just awesome! great that they acted quickly, thanks so much for letting us know. I did read that some people did very well with Navelbine, DD was on it, but things don't stick with her, so i can't say she's an example, and mixing it with Taxotere seems a good strong tx. How old is this gorgeous little one?
Babs at least 'things"moved, good for you! Let's hope for good new on your side of the fence.
Zar that's exciting, you worked really hard on the Japan front that's for sure. Love what you said about considering what you think of the medical community, there you go. I'd say that is applicable everywhere. Crazy, instead of being the norm, we think we found gold.
Ronnie no she won't take that, thanks. I saw that potassium was very low, RO ran BT on Friday b4 starting the 2nd phase of the Rads from the neck down, which was today, and this is one of the things that popped up, aside from low hgb etc..and banana she won't take, too difficult yet, so I saw that raisins are good, so she's gonna swim in that.
Also, she still has the hematuria, last nt was scary she almost could not pass urine, and then forced herself to drink(because she can't really drink yet- if she drinks a lot it suppose to help), and thank the Lord she passed large clots and then it quieted down. BUT really WTH??? she does not have enough to deal with??? THIS is for sure the devil we DON't know!! It's about the Bladder Hemangioma, URO fulgarized it, and the type she had there is like 1% of ppl that get it, and mostly males, so like what??? So the question is for how long could this go on, she is so young this is not a 90something person, that is maybe more used to dealing with this type of indignities URO is so nonchalant about it. She has an appointment very early on Wednesday with this winner, she feels something on the left side of the pelvic area, I don't know what he'll say. For all she's going through i should have been on some good drugs when i was pregnant with her, at least i could have had a good excuse. This is not normal.
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Nina, I do not post in this thread but I know many women here from other threads, so I read along quietly. I wanted to let you know that I have had three ERCP common bile duct stent procedures like you just had, plus an EUS. That was exactly four years ago. Recovery took a while and I had to be diligent and careful, but I have done well. If there's any way I can help, please feel free to PM me. I've been all around the arena on this bucking bronco. I'm so glad you got help and are improving! This is scary stuff when it gets out of hand, which mine definitely did.
In short: super sneaky lobular BC mets snuck into my common bile duct and set up camp, and all hell broke loose. I should have gone to a gastroenterologist or to ER earlier than I did. My duct was found "glued shut, wide and occluded, and full of strictures" and my gallbladder was distended and full of sludge.The bile duct mets set off a 5cm mass of inflammation at the head of my pancreas, and pancreatitis set in. Then my liver failed several times in a three month window. That was a lost fall/winter I would like to have back.
I was in the hospital a lot that winter with liver enzymes out the roof, and I went six weeks without eating a meal. Urine was the color of a basketball, stool the color of light clay, and of course my skin was yellow. The fourth and final surgery was an emergency. When the surgeon pulled out the stent he had put in a couple of weeks earlier (the first two stents were plastic and they clogged up quickly), he said infection spewed everywhere-- but thankfully he was already in there with the scope so he was able to quickly suck it all out and clean everything up. He then inserted a large mesh metal stent which can expand a bit. That procedure saved my life. I came so close to dying that time that I was aware of my thinking processes fading in the hours right before I was taken to the hospital. But things quickly turned around with the big stent and armageddon-grade IV antibiotics that dripped in my port over the next week while I binge-watched Downton Abbey in my hospital bed and sipped broth. (I learned that if you watch DA, you will get a LOT more attention from the nurses because they want to find excuses to hang out in your room!! True story.)
That's the scary part; here's the good part. I have now had that mesh metal stent for three years past its projected efficacy window! Usually they have to be replaced after a year or so. But my monthly liver panels are still normal, so we are leaving well enough alone until symptoms start up again. I still have my gallbladder, which is amazing. I have had a few random gallbladder attacks (maybe one per year; we think there's an occasional stone banging up against the stent till it breaks down enough to pass, and that is the cause of those pain flares), but I have been able to remediate and (I think) even prevent boomerang flares on my own. I keep a kit of supports for gallbladder and liver, for when I sense my biliary tree is getting sluggish and needs a helping hand. I am fully recovered from the chronic pancreatitis, which still feels like a miracle!
So chin up. Take care of yourself and I think you will do just fine.
BRAVA to you for going to ER. The biliary tree is nothing to mess with. Mess with it, and it will mess with you! PM me if you have questions or anything. I know I sure did.
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Momallthetime- There are many foods with higher content of potassium than bananas and maybe some of them would appeal to Dani. The highest are dried figs, molasses and seaweed (>25 men/100 gms) the next highest are Avocado, dried fruits esp dates and prunes, nuts, bran cereals, wheat germ and lima beans (>12.5 men/100 gm) then come a large group of veggies and fruits with .6.25meq/100gm) which include bananas, mangos, oranges, kiwis, cantaloupe, spinach,tomatoes,boroccoli, beets, carrots, cauliflower, potatoes and several of the meats.
I think that avocados would be a great choice if she likes them since they are high is calories also which she needs, If she likes mayo you could mush it up together and get high potassium and high calorie! I can't imagine eating enough molasses to help, but, maybe. We don't really have any California Avocados left in the farmer's market this year, but, we can get them easily from Mexico in the stores. You might be able to grind up some nuts into soups etc
You can also get potassium in pills. Hugs to you both.
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Z - I wish you quoted me on buprenorphine, but if you think that helps anyone - that will do, too.
How well a patient tolerates the procedure, the access to lesions and the experience of the interventionalist forms the difference between the 4 and 6 bites ( making a 50% higher chance of getting diverse tissue) that you were asked for by path - and it would not take a degree in maths to work that out.😉 I also said to ask for adequate pain relief if sore.
I'll get out of here before the Mods delete this.
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Hi everyone, I was first dx with ILC in 2009, had a mastectomy, chemo, radiation and then 7 years on Tamoxifen. In Sep 2016 I was dx stage IV with Mets to the omentum and bones. I took affinitor ( for 3 weeks before side effects led to this being discontinued); Exemestane and monthly Xgeva shots. In Oct 2017 I was dx with Mets to the liver. I’ve also been diagnosed as a type 2 diabetic in the last 2 months and take metformin 1000mg nightly and 26 units of insulin nightly.
I had a liver biopsy which showed that my cancer has changed from ER+; PR+; HER2 - to ER+ (25%) PR- , HER2-. My oncologist says we are now dealing with two different sorts of cancer. Tomorrow I’m starting Xeloda, (2000mg morning, 2000mg nightly) but keeping on with Exemestane. Has anyone else taken an AI with chemo?
I hope the Xeloda works for me with few side effects. Best wishes to you all,
Cheers
Judy
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Wildplaces -
I have your buprenorphine email in my pocket waiting to post, I've just been so busy getting this biopsy organized.
Your biopsy advice really helped. When I walked into the room they are on autopilot ready to get through whatever they were thinking the plan was ... wrong or right. I had the familiar feeling of being a piece of meat they need to keep calm and compliant. Certainly this group did not see me as a partner in the execution of the procedure when I arrived, but with you advice I turned things around and we got it done right.
>Z<
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My MO said I might have to have another liver BX if there's not enough of my tumor to do testing. Why do they have to have so much? She's doing Foundation One, does Car is need more tissue? Sounds like you got good advice and followed through to get the job done. Bravo, Z.
Mom, Dani could have IV potassium as an out patient at the cancer center. That brings it up real fast. You don't want to mess with low potassium, it can have detrimental effects on muscle, even the heart muscle.
Z when will you get the results of MRI, or did I miss that?
Mom. Are rads almost over?
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NKB thanks for the thorough advice, now if i could just get her to go along with it. But i'll try, i clipped it so i could have it handy.
Gannax, yes, she started rads to the body yesterday. It will be going 14 days. Thanksgiving off. We'll have a get together at her house. The problem is this horrible bleeding that forms clots, i really would like to hear of s/o that had the same issue, the internet is not very helpful with this info, very sporadic, they tell stories of newborns, or mostly much older people, and the one i saw in the 20's they did the procedure and voila, no problem.
Actually, does anyone here know of a good site as this one but for the bladder so i could get info, again i was trying to find out but were not successful.
Judy, a lot of ladies here were and are on Xeloda.
Lulubee great share. It could help a lot of people. The best thing is your doc did not give up, i could see the scenario going much different.
Zar what's up with wildplaces? i could not understand the post.
Someone on a different thread posted this. - http://channels.isp.netscape.com/news/health/story/0002/20171117/KBN1DH2SX_1 Pretty much the whole thing is just a crap shoot when someone gets to stage IV. Is it not?
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Hi Mom,
I don't currently have liver mets (cancer has spread to the capsule around my liver so a bit anxious that this is next) but watch this site as I'm following what Z is up to. I hope folks won't mind me posting here.
Yes, it is a crap shoot. I'm case in point. I was diagnosed as stage 2a in 2001. I had a 1.7 cm tumor with micromets to the sentinel node. I did have quite a bit of lymphatic and vascular invasion with my tumor. Given my age at the time (38) I threw the kitchen sink at it with six rounds of aggressive chemo, radiation (with additional rads to my clavicular nodes as part of a clinical trial), five years of Tamoxifen and then three years of an AI (originally started with Femara but it made me ultra bitchy so switched to Anastrozole). Now, almost 16 years after original diagnosis, I found out I have mets, initially with a right pleural effusion and bones.
Typically this long gap leads to better outcomes, at least for the short term. My MO thought we would be able to get me back into remission fairly quickly and that I would do well for what he referred to as a "good long time". So far it hasn't played out that way. Three rounds of Taxol failed. Anastrozole and Ibrance failed (not clear if Ibrance failed - my blood wouldn't bounce back and my hemoglobin kept getting lower and lower). October scan showed significant progression in the bones and now it's spread to my belly (peritoneum). This cancer is doing what it wants! On Xeloda now and hoping for some success.
Pat
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Thanks Grannax, still no Xeloda.....Called my Onc's office yesterday to inquire and they promised to check with the Specialty Pharmacy and get back to me today. So far nothing. If I don't get it by tomorrow it will probably be next Monday which would put me a month out with no Tx. I hate to be a pest and call back but the squeaky wheel hopefully will get an answer. Frustrating as heck.
mom, so glad about Dani's enzymes dropping! Less stress on the liver is fantastic. Thanks for the clarification on the TACE procedure. Good advice to keep in mind.
Z, thanks for the link on metronomic low dose chemo. Makes sense to me and hopefully something that will start to be widely recognized. Glad the biopsy was OK and hope you get results this time with no bumps in the road. How great that you can get TACE locally (or Y90) should you decide to proceed.
babs, You definitely don't want to leave town without knowing what is causing the bloating. I can tell you if it is ascites it will only get bigger and more miserable with each passing day. Fluid in the abdomen can be detected easily and quickly with an ultrasound too. I sure hope your treatment helps and you feel much better for your trip! Aw, Paris! I hope to go someday soon. It's always been my big travel dream...
Nina, I am so glad to read you got through your procedures and got some relief! I hope you can enjoy DTA from your own home this Thanksgiving!
Lulabee, You are a walking miracle and an inspiration for what one person can endure and live to tell...
Magpie, I read with interest that your tumor status changed with ILC as my Onc told me that generally it won't change with ILC. He did say however that when we begin to run out of options he would do another biopsy to check.
Sadie, I wish for huge success with the Xeloda too. I am ready to start anyway and am praying it knocks out my belly mets along with the liver mets. Belly mets are not fun.
Nkb, good info on potassium!
Robin and Mom, Ensure on ice also tastes pretty good and that have one with double protein!
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Pat by all means, it's so sweet for you to chime in. Thank you. I honestly believe THEY are fooling the world with this remission business. I was speaking to this young person, and she tells me how she is in remission. I know she is not. Because hers also traveled to her nodes, but doc is not telling her that. I reread not long ago, the initial surgery report from DD and I see she had extensive lymphovascular invasion, so they knew from the get go what her story was, but no one bothered telling us. The worst is WHEN she did feel much pain in her shoulders, BS and Onco, nice ppl dissed it, saying that maybe she overdid something. We had it checked out, and the rest is HX.
Artist this is what happened to us. Something is not right. Maybe speak to supervisors etc…Sometimes what happens is that if the doctor's office does not send the info exactly as required, Pharmacy just ignores you, you'd think s/o would call you. No, I don't think it happens like that. Yes, ensure on ice, that maybe she'd do - thanks i'll ask.
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Zar I can't believe i missed your post. We posted at the same time. What an ordeal. All these is so unreal, as my stories, that if I were to be reading a book i'd just say, yeah right! Great work!! And it's all work. For sure check up on them. Btw, did I miss it? What did the MRI show? Can you explain about the lymphosytes? Happens to be Dani's lymphosytes automated is 3.10%it says normal should be above 17 so what does that mean?
How about the children serve you for a change? Really, be smart about it.
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Had my scheduled scan today but due to my latest issues I also saw the NP -my mo is away until Tuesday. She had BT done and rushed the scan results. CEA more than doubled. Scans show progrsssion. They didn’t see any reason for the stomach pain or bloating but the NP is asking them to take another more detailed look. I’ll be out of the study and will meet with my MO next Thursday She has me scheduled to have a Halaven infusion Thursday night.
I’m soooo uncomfortable. But I’m still planning to go surprise my dd in Paris. I only hope she doesn’t realize how I’m feeling.
Babs
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Babs - darn progression! Enjoy your trip to beautiful Paris!
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