How are people with liver mets doing?
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Wednesday I speak to RO about CyberKnife radiation. Anyone had the luxury of this tx?
I live 2 hrs fromthe CyberKnife tx and my present RO is in that practice.
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I'm back home from 3 days in the hospital. My infection cleared up but the skin rash did not. Evidently, I had cellulitis and a skin allergy. It might take weeks to go away.
I'm glad to be home.
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Grannax. Glad you're home! I LOVE my bed
Babs
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Grannax, glad you are home.
Z, I am glad that portions of your biopsy have resurfaced. I hope there will be enough for Caris. It will be interesting to see if F1 and Caris show different mutations/amplifications or whether they will be consistent.
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Welcome home, Grannax. Speedy healing wishes for you.
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JFL - I just got a note from my MO. They are checking to see if there is enough tissue remaining to send the test to Caris. If not I get another biopsy when I return. No worries. Just another biopsy. I want to kill someone. Instead I put my game face on and I was sweet as pie. The best strategy is to be pleasant and say whoops! We'll just do it again!
It's not like they are providing a free service... they are charging a huge amount of money to screw up my testing. Whatever.
>Z<
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Hi everyone, I'm kinda having a freak out out my mom's elevated bilirubin numbers, I don't know what they are but they are elevated enough to cause some symptoms ( itching is the one I'm very aware of but I'm holding out hope that is just some sort of side effect). I've seen a couple posts about elevated bilirubin and it's got me really, really nervous right now. Has anyone dealt with elevated bilirubin levels and seen improvement when treatment started working? Thanks-PDX
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PDXson, my bilirubin was elevated when I was diagnosed (.5 when should be .2 or less) and it went down to normal once treatment started working. I did not have symptoms of its elevation but nonetheless, effective treatment will bring things back down. At my recent progression, my bilirubin stayed normal but ALT/AST elevated to 105/143 at peak; a week of effective treatment and they are back to normal at 38/34.
Grannax, welcome home! I know how great that feels.
Z, always following your adventures. You are a saint! And wise, I think to stay on everyone's good side for your best interest.
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I'm just kicking in with info where I'm at right now. I'm following the thread, but so many things are going on all the time and I have had friends staying over for some days.
I still haven't started my taxol-treatments.
I arranged with the hospital that I should get a wig - and then the weekly treatments would start.
Shock - I cannot get a wig that easily. Turns out that I apparently have an 'enormous' head. The largest wig shop in the county don't have any usable wigs my size (I have never been able to buy a hat - they were always way too small. But hadn't anticipated that that would go for wigs too). Right now I don't know what to do. Don't want to wear a scarf - it's so ugly! I can have a personally made wig - but it will take 3 months before it's ready for me - besides it's terrible expensive.
The doctor said I will be on chemo for the rest of my life - which makes me consider having a real hair wig glued on with surgical glue. The glue is made for skin and there's no risk. You go to the wig shop every month and get the scalp and wig cleansed and it's glued on again. Every 4 month you get a new wig. However, it's also a very expensive solution and I don't know if I'm a candidate as this solution is mainly used by those with alopecia. However if I'm never getting my hair back this might be a very attractive solution as I will also avoid having to look at my bald head mornings and evenings. You wear the wig 24/7 - even in the swimming pool. Has anyone tried this solution? But having this custom made will also take some time!
Except for occasional sharp pains in my liver I'm feeling so good at the moment. All medicine is now out of my body - and I don't want to think about becoming sick and tired and all kinds of possible SE when I start taxol.I hope to start treatments in a week - but just don't know what to do about my hair.Sorry to kick in with such small problems right now as I know so many of you have been through this before - but right now it's such a big thing for me. I just never thought getting a hair replacement would be that difficult.
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Lisbet54- Losing your hair is not a small thing. It is not just a vanity thing, it is a signal that you are sick, it is a loss of privacy and many other things. It is primal. I found it hard. My hairdresser went to the wig store with me which helped with color and style etc-i felt overwhelmed there.
I am not sure what to do about your "enormous" head (men's hair replacement store?-maybe this is a stupid suggestion -I don't know) there are ice caps here to try to decrease hair loss which I would try if I had to use chemo that would cause hair loss again. I suspect that it is very expensive- although I have heard of people having their friends help them and lowering the cost.
My favorite "fake" hair was a baseball cap with hair attached. It was the most comfortable and easy- not itchy etc- it works well outside or in a store- at home it is a little weird to be wearing a baseball cap. Wigs were less comfortable to me especially on a hot day. I would get the synthetic hair unless you are good at styling. It is cheaper and basically you wash it and it dries right into its style. There is a thread devoted to hair topics that you could go on. I haven't been on it in years-very supportive and informative!
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Hi Ladies, I lurk here all the time with my own liver mets but tend not to post on fast moving threads because I feel like I can never keep up and tend to forget to comment on everything I wanted to comment on!
But I did want to pop in and say how much I agree with Nkb about hair and privacy. Around here it seems to be almost trendy for cancer patients to go around bald or just in a cap that doesn't cover the baldness but for me I just don't want to let every stranger who sees me know my business! I wear my wig whenever I leave the house and am glad of it.
There are women's wigs with large cap sizes (examples here), could you get your wig store to order one or more and let you try them on or would those be too big, too?
Another thought, with my wig my seller snipped out a few of the elastics and sewed it tighter in the back, if you had a wig that was fairly full to begin with so you didn't get bald spots, I wonder if they could add a few elastics down in the back to give you a little more room?
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Lisbet, nice to hear from you. I, too, needed a non-standard size wig, and could not find one in a store. RosesToses has given you the link I was about to give you! There are 21 size large wigs for women shown there. I got a really perfect-for-me wig from this place. I called the company and they said they do ship to Europe. Shipping costs $54.95, and there may be duties/taxes to pay. You would receive your order in 8-14 days; since it usually takes 2 or 3 infusions before the hair starts coming out, you should have time to get a wig mail order. Maybe you can find a web site for a wig company located in Europe. Be sure and check their return policy. Note that many wigs have an adjustable strap that could give you 1.5 more inches.
https://www.wigs.com/pages/how-to-find-your-wig-si...
P.S. Not all chemos cause hair loss the way taxol does, so you may have your hair back later. The sharp pains in your liver are reminding you that it does need some help from Taxol. We will be here for you!
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Thanks for support Nkb, Rosetoeses and Shetlandpony.
Dare not order online - as I know that wigs need to be cut and trimmed and don't have a clue what suits me because I cannot get anything like my own hair. I have long curly blonde/grayish hair - which doesn't make it easier I believe. I tried about 50 wigs - most of them too small. Only two fitted - but they were absolutely horrible. It's overwhelming. The girl in the big shop did try to help me, took her time and was reasonably emphatic. However she wasn't helpful in suggesting any solutions for me - just apologized that the brands they had in the shop didn't have standard wigs my size. Made me so disappointed because I know that people travel quite long to get to this shop as they are known to have a large assortment. I have, however, made a new appointment with another store in a couple of days - and the shop keeper said she might have something for me. I hope so much that I get something acceptable or that she will have suggestions to customize it. I work with high school students - none of them and only a few of my colleges know that I'm ill. Now I will show the world. Hate it!
I think bald is fine - if you're young and beautiful. But I'm sure they wouldn't appreciate the baldness on my job, and right now I'm not in the mood to make a statement and be bold!
The hospital did tell me that it's not possible to use cold caps/gloves/shoes. The reason is that the it takes about an hour longer for the IV with the cold caps - and they don't have time, space or personnel for this.
Yes, the pain in my liver does remind me that I need to start treatment soon!
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Babs so glad for you, as I told you before, and really thanks to such a special lady for putting yourself out there, and trying to make some sense from a senseless people and try to set us up with your doc. The Center did not permit it, George Orwell's story comes to mind.
LindaE so sorry for your progression. At least Onco is acting immediately. Good luck.
Z sweetie how do you even do it?? How many people would travel the world over alone to do what you are doing. You are fire girl!!! What does DD do while you having these infusions? How was it all taken care of?Z thanks for making me laugh!! I pray and pray that THIS should be the last thing taken from me. That sentence about your life not depending on this. IT'S SO TRUE!!!!!!!!!!
Z the biopsy was sent to pathology and they looked at the ERPR business, then it's sent to Fish for the HER2… And yes, I wish they would send D's for Immuno stuff. You are doing all you can.
Wendy this is terrific!!! You came a long way baby.
Oh Shetland let's hope for the best.
Lindalou I cannot believe you are going through this.
Grannax so glad u r home, could the rash be from pain meds?
GUYS it's been a marathon every day. THANK YOU SO MUCH!!! for thinking of us. I'll try to put it in a nutshell, since that horrid episode in the Cancer Center from HELL, 2 full weeks, we were emailing and calling Onco's office to ask what's next. NADA!!! One time Onco, emailed that she's working on it and will let us know. Baloney. I just sent a good healthy rant to the director of this sewer hole, and told them they are a disgrace to the public.
BUT, more importantly i had to get SOME names of docs and opinions about what to do next, because these other place obviously is negligent.
So, today Dani got Brain MRI and PET/CT ordered by a new doc at a new facility, and tomorrow we have to make the difficult choices.
Obviously there is progression in the liver, the rest we'll know tom. This doc wanted a trial with Ruxolitinib but it's very new, Phase I and i told him I don't think we could afford to put Dani on a trial at this time. Who knows?? Anyway, then we went to Neratinib, that's the one he will prob offer tom.
I'll throw in these others given by dif doctors, Abemaciclib, or Pembrolizumab, or chemo. The chemo would be a different type very regulated,
1) CAFVP. Has worked when resistance has developed to CMF or CMFVP.
2). Navelbine 25 mg/M2 weekly
and
Gemzar 400 mg every other week continuously.
3). Methotrexate 150 mg/M2, 5FU 350/M2 and Solu-medal 40 mg weekly with leucovorin rescue at 20 hours - take leucovorin 10 mg severy 6 hours x
6 doses.
I am suppose to make this life decision tomorrow. NO WAY i can do this. It does depend on what the scans will show.
Any takers, wise ladies and gentleman?? In a way yes chemo to knock it down, she has plenty of pain in the spine and back etc...i really don't know.
(i'll prob post on the other threads so sorry for the doubles)
Everyone waving at ya.
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Lisbet. It's good to hear from you, I was wondering how you were doing. I think a wig is I very big piece of feeling some normalcy in a very abnormal situation. If ordering online has a return policy. You could take measurements and even send a pic of yourself. One other idea, someone on this thread or another one might have a wig they could mail to you. Same info needed, a pic of you and head measurements. I'm praying that you will get one that matches your color and style. Even synthetic wigs can be thinned by your hairdresser, if needed.
Mom. I don't take any pain meds, YET. It's almost like the extreme infection and swelling scarred my skin. It's just a mystery to me. I may have to go to a dermatologist. It's itching a lot today and that makes me wonder if my bilirubin is elevated but no one mentioned that. Ill be praying there will be a clear decision tomorrow based on the results. I'm glad Dani has a new doc.
Z Yes, they lost it and you have to pay for their mistakes. It's just wrong! I think it's wise to keep your game face on.
I guess I'll be off Ibrance for a few weeks till the rash is gone. That's what my MO said. Meanwhile, today I was wiped out. I guess I'll have to blame it on the infection because I'm not on Ibrance or femara. Obviously, I needed the rest.
My cat is very content for me to stay in bed all day, of course.😽
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Where we are the hospital provides a dollar amount for wigs. There is a shop in the hospital where you go and a hairstylist helps you pick one. My moms wig is beautiful. She got so many compliments.
Z stand your ground with these people. Which I'm sure you will.
Has anyone here tried cpb rso oil? I'm going to call and harass her doctors for a drug card and get this for her. She is at a point where she can't do chemo and has exhausted her options. Any other suggestions? Once and if she can leave the hospital I can try some other things.
These hospitals and doctors are so aggravating. We may get free health care here in Canada but I feel as its pretty lousy. My mom had to drive herself to the hospital. She waited 15 mins for an ambulance that never showed. They only had 3 in town. Had to wait for an hour for pain medicine. All the nurses were eating lunch together .
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gorgeoushairwigs.com is a website that provides head measurements and many wigs. I ordered two and was very happy with both of them.
Christina313...I'm a RN in Canada who is very proud of our healthcare system. It is there when you need it and you are not denied medications or treatments. My question is, how do you know they were even the nurses? Everyone dresses the same now a days. I'm not sure where you live. I do live in a big city with a Cancer Centre. There are duds everywhere in the world...
I am grateful for every single healthcare professional who is trying to save my life. From the first round of taxotere that landed me in the hospital with febrile neutropenia to the interventional radiologist who did my SBRT. My every three week Herceptin and Perjeta and my wonderful team that has resulted in my latest CT scan (Oct 4) "no new or residual disease"
I have worked in many areas of nursing, from teaching at the university to now working only two days a week as a nurse navigator for breast cancer patients ( worked in breast health 20 years and before I started this journey) I will move mountains to make sure my patients understand their diagnosis, treatment and have the resources they need.
Hugs to all of us and may we all live long enough for that next breakthrough!
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So onc responded to my exceptionally pleasant email with an exceptionally pleasant response. That's the good news. The bad news is that Foundation One did not send enough of a sample back to do the Caris Molecular Intelligence test. The Caris test has an immuno-histochemistry panel and Foundation One does not. I am certainly interested in the information and the biopsy was not bad. At the moment I don't know if they even have enough left to determine my ERPR status and if that is the case, I will just get another biopsy.
Putting this out there so people understand how stupid the doctors assistants and pathology department can be. My mistake was believing my docs assistant (She said she had checked and the cores went to Caris as the doctor ordered!) and not calling the pathology department myself to confirm. Turns out should didn't know a biopsy core from a bugger and the Caris test from CBC panel. Talking to her later, it was clear she actual did not know what she was saying. bstein, I honestly haven't run into many people like you in our medical system here in the US. The level of pure sloppiness has astonished me.
But I was gracious in my communication so my relationship with my onc and her team is probably stronger. Important not to create unnecessary collateral damage as I apparently I need to be more hands on not less. Thank you all for letting me vent here. Would not have been able to find a way to be gracious without you guys.
Mom - I would get her on a limited chemo asap. I am worried she has been effectively off treatment for a while. Not sure of the difference between your options but the methotrexate combo jumps out because it seems to be a short and potent course of a cancer killing cocktail. Then I would do the immunotherapy (Pembrolizumab) in combination with an immune enhancing cancer killer like abemaciclib, hopefully for some time. Run something like that by the docs and see what they say. They want you involved because its a crapshoot but I also now they will guide you. Don't stress you will know what to do.
>Z<
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i found the nurses in London to be great. I certainly did not mean all nurses. My mom has one male nurse and who sits and chats for 10 mins here and there. It makes a huge difference. She really likes him. We certainly have had a few that you can't find or are little agitated. When you see your loved one in pain and can't find anyone, you can't help but be pissed off. As for her doctor, I am not impressed either. He has no bedside manor and he never did a liver biopsy. Now its too late. This cancer took over in just days.
It is what it is. We are our own advocates.
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Popping back in to say hello and wondering if I am an exceptionally slow reader to take so long to catch up on everything.
Z, thanks for the expanded perspective on biopsies, Foundation One, and Caris. I have had biopsies of liver, breast, and lymph nodes, and all seemed a bit tricky for the radiologist to get, due to small tumors, dense breasts, etc. It seems that I good biopsy sample is never a guarantee - so what's the solution, extra core samples every time, if that's even possible?
Today is scan day, I had a head CT in the early morning, followed by breast/axillary MRI midmorning. The MRI was routine follow-up, but the head was scheduled quickly due to me having headaches and vertigo/dizziness for about 2 weeks now. I saw my PCP, and he couldn't find anything else to explain the vertigo, making me worried that it is a brain tumor. I never expected a brain tumor as my next crisis, so feeling unprepared. I expect to get results early next week, possibly Friday.
A neurologist I know says if it's clearing up on its own then its probably not cancer causing the vertigo, so I spend all day second guessing whether it is getting better or staying the same.
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My wife went for a liver biopsy last year. She fasted, sat on a gurney in her gown, then was told that because they hadn't ordered an INR, she couldn't get the biopsy that day. Needless to say she was pissed. She raised such a fuss they took her blood, rushed it down to the lab, and did the biopsy after getting the INR results. People need checklists so they don't forget critical steps. I know they hate to be called and reminded, but they make so many errors. Wrong contrast dye was used in my wife's prior MRI, made the results useless for comparison.
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Momatt - worried about Dani. I pm'd you some ideas to jumpstart getting Sloan Dr V 's opinion, etc. but let's get Dani on something soon, and then deal with the next steps - including their poor care for her. Did her PET scan results come back? Z has some great ideas for you, including abemaciclib. Please keep us posted.
Husband11 thank you for biopsy checklist reminder, we all must be advocates. LisaY - rooting for clean CT scan, you will be fine. I finished round #7 of Abraxane yesterday. So excited to share that Dr. Glaspy at UCLA is having his PA meet with Eli Lilly rep to get abemaciclib on a low cost copay. I am thrilled that many of us will have another weapon in our arsenal - and it's a daily pill! Happy dance!
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Z: when I had my liver biopsy done the hospital checked ER, PR, HER2 status. Did your hospital check or do you want confirmation from Caris? Is the doc office or hospital paying for either F1 or the Caris test? Doesn’t seem fair you have to pay for both unless your insurance picks up both.
Tricia
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The hospital sent the block to foundation one (wrong lab) without doing any testing for ERPR or HER2 status. They were supposed to send to Caris which is a much more complete test with an immuno-histochemistry panel that includes ERPR and HER2 as well as many other tests. Foundation one used the whole block so there is nothing left even for the local lab to determine ERPR status. Neither foundation one or caris every charges the patient if insurance does not pay but I have to get another biopsy, if it is even possible when i get back. And I don't have the information to inform the treatment I am getting now.
I had a good cry over this this morning. I am tired.
>Z<
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Z - so frustrating to hear, sending a gentle hug. FYI another poster said the samples are usually so small that it's barely enough for one full testing, let alone two. I am confident that due to the material error(s) in misplacing your sample, another (free) biopsy is in order. Remember to alert your carrier - they have staff and lawyers to assist at no cost to you. This warrants more communication. You and your biopsy were mishandled. The harm extends to not having current info for your required Japanese treatment. Is there anyway to have Japanese hospital perform another biopsy and bill your insurance?
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Z- Lalady's suggestion is a great one. Maybe you can get the biopsy done there now?!?
As many of you know I'm in a study for a new drug GDC0077 and I got my scan results. My liver mets decreased as follows in just 2 months time :
Segment 5 went from 2.1x2.1 to 1.4x1.3
Segment 6 went from 2.5x2.1 to 1.6x1.3
Segment 2 went from 2.8x2.6 to 2.4x2.3
So, a good response, And all I have to take are 3 little pills. I hope it continues and that many more of my BC sisters can be part of this study and get similar or even better results.
Babs
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Happy to hear of your great results Babs! It's good to hear about new treatments with positive results.0
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Yay for shrinkage, Babs!!!
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Babs - so happy for your results! Does your trial drug have a name? I am thrilled to be told that I'm a candidate for abemaciclib along with X when I finish Abraxane. Abemaciclib is a single daily pill and can be taken alone or with faslodex (which my Dr is suggesting) or with an AI. Main SE is diarrhea, but that is doable. My other pill option is Xeloda with main SE of HSF. We will know which way we are leaning from Nov. scans and TMs. I'm planning on staying with A-train thru December to get the best run on weekly chemo (5 mos). My onc said I don't need a liver biopsy as they know I am still ER+/PR+/HER- and not a candidate yet for proton therapy to liver, and can't have rads again or try proton to jaw met. But I am a candidate for Abemaciclib like many of you who had Ibrance fails. Looking forward to trying this new pill and having a good run. I had 18 mos on Ibrance. Z - I can't wait for your safe NED return and perhaps persuading Japanese clinic to re-biopsy you there.
(()) Claire smiling tonight
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Lalady. No name just GDC0077 which I take in combo with Letrozole.
Bab
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