How are people with liver mets doing?
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Shetland and everyone - Thank you for continuing to think of me. My local onc is sending the liver out for the Caris Molecular Intelligence test. For some reason my doc prefers it. I pretty much ran her over with the liver biopsy as well as by going to Japan for treatment and declining (for the moment) faslodex, so I let her make the call on the genetics testing. The more I study it, the more I like the Caris test, so chalk one up for the old MO. It does immuno-histochemistry which could be helpful with my treatment here in Japan. Curious if anyone has opinions on Caris vs Foundation One
I am in Japan but my treatment so far has consisted of going to a temple per day and lighting incense or a candle for us all. We have a one temple per day cap during this trip as there are quite a few and there is a limit to what a 11 year old can take, temple-wise. Between temples we just marvel at the differences in ... everything. In this picture my daughter gets her self a beer for breakfast from the beer vending machine ...
We are taking this week to get ourselves settled in, learning the train and bus system and figuring out currency, shopping for food and necessities and generally setting up our routine. We'll be here five weeks total and I didn't want to be jet lagged, confused and stressed while also dealing with medical treatment in a foreign country. Japan is meticulously clean and safe, unlike the places around the world I have lived, but it is more foreign, perhaps less americanized. Glad to have this week to figure things out.
>Z<
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kaayborg - I'm so sorry to read your post. Keeping you and your family lifted in prayer.
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Kaayborg, I am sorry you are having to deal with this mess. As far as insurance goes...by any chance do you have a nurse case manager with your insurance company? If so call them immediately and explain what is happening. If you do not have one call the customer service number on the back of your insurance card and tell them you need one immediately and ask that they call you before the end of the day. Nurse case managers are responsible for coordination of care between all parties (you, your doctor, and the insurance company), and they are also your eyes and voice behind the scenes. Next, do you have private or government insurance? If you have private insurance, immediately call the Ohio state insurance commission and get the phone number for your state insurance ombudsman. Call their office and let them know your situation and that you need help.
If you have government insurance: for Medicaid, call the Ohio state Medicaid office and ask for help. Each state is a little different but they may have a Medicaid ombudsman that the Medicaid office will refer you to or will assign you a case worker who will immediately start working for you. If you have Medicare, contact the office for Medicare for your area. You can find the phone number on the web by typing in Medicare and your state. If the insurance company denies the request, immediately demand a fair hearing. Depending on the insurance company either you or your MO's office on your behalf will need to request this. The insurance company may require a peer-to-peer with your MO and one of their medical directors prior to a request for a fair hearing.
I know this is a lot of information and instruction but you need to get answers now and not a week from now. The above referenced nurse case managers are NOT the same as a navigator associated with your MO's clinic/office. Two different missions in scope. They do work together from time to time but they are not one in the same.
Praying for you and your family and that you get answers ASAP.
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Kaayborg- Telling your girls was very wise- we will all die one day, as they know, and to be able to talk to ( and hug) your mom while she is still alive is beyond precious.But I also never give up. Are you in suffiiciently fit shape to take on a clinical trial? Brain mets? There is some kick-ass stuff out there, when you have a biopsy results and suggestion for treatment, please post again and carefully consider all of your options.
Z- More pics, please!! I already want to go back to Japan, and was just there 2 years ago! Are you in Tokyo or Kyoto?
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Z - more pics please. Tokyo is rather daunting at first, but I'm confident you and your savvy daughter will learn the system. I have many fond memories (and a few not so fond) of working in that rather chauvinistic country.
Please visit Kyoto on the bullet train. Take it slow and please share all. I am following you with interest, as I am considering this process too. You are an inspiration to us all. My onc surprised me during my Tuesday Abraxane drip and we agreed to scan second week of Nov and see her on 14th to decide; more A train chemo or switch to X. Surprisingly I am leaning towards more chemo to knock it down to NEAD or as low as possible. Then move to Xeloda as I have booked a British Isles cruise at the end of May. Going first class and blowing the rest of my FF miles - wee! My sister will come too, but in premium economy as she is a sensible RN. lol FYI, I have updated my will and trust for peace of mind. Thrilled to be paying first year of college via 529 plan for my niece who is starting Biomedical engineering at ASU in August (we need more female engineers!), and getting my nephew in Montesorri next week. Giving now allows me to see fruits of my many years of working/savings. Condo will be paid off when I pass, which makes me smile. Suzi Orman was right; people first, then money. I am still working from home, planning to return in Nov part time. Kaay - you are in my thoughts. Cure-ious what meds are you on now? Has anyone left Abraxane and moved to X and when it fails returned to Abraxane? Or do most try another chemo? (()) C
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Z- wonderful picture! The vending machines are a fun part of Japan. What neighborhood will you be staying in? I hope you feel well enough to keep exploring after the treatment starts. Cat cafes.
Kaayborg- thinking of you. Lots of good advice from NO1-2NV to get a nurse case manager working immediately. I would pull out all the stops to get the medication and see who can speed this up for you.
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Hi LaLady!!
You are ahead of me, I still have no will set up (playing chess with Mr. Death). Instead initiated a lawsuit to try to improve things for female STEMers at our place, and so far to great success. FYI, there is a system in the UK that has made a huge difference there- all universities and research institutes have to get rated every four years (like Moodys) except it is on the basis of gender metrics (what fraction of your workforce is female? Pay equality? Committee/leadership opportunities? Daycare support? bonuses? Retirement packages? etc) - and the kicker is, they are not eligible to apply for research grants unless they have at least a silver rating. Provides a direct incentive to the administration to strongly bolster their female contingent. The system will go on trial at 8-9 (anonymous) institutions in the US starting next month. Wont' be without problems, and I think congress would have to approve it for the NIH. So, for our girls, real change is coming!!
I am still Ibrance/Femara, cycle 25. Maybe will go for Abemaciclib-Faslodex on progression, but definitely would have to be stronger if it shows up in the liver. And I don't want to wait too long to get some immunotherapy added in, so I'm also watching Z, like a hawk.
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Cure-ious- bravo for your work with gender equality in STEM. I just heard a bit of an interview with Melinda Gates who said gender equality is far worse than when she was working. She did say that she thought the current trend toward exposing what is going on was going to help. Men need incentives to move out of the old boys network and rules to guide them. (they just don't get it otherwise)
Do you think that there is a subset of people who are actually killing cancer with the Ibrance/Faslodex or femara vs just causing a big pause that will eventually mutate and recur-or just that the pause is longer for some people. Would you switch to Abemiciclib because you thought it was a better drug or just a different one. Which immunotherapy are you considering? Seems like the future will be adding the immunotherapy to Ibrance/hormonal right from the beginning. I am early in research of all this however.
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I had the appointment at the hospital today. Unfortunately I had to face one of the young most un-empathetic doctors. As I had expected I'm finished with faslodex/ibrance. After only 3 cycles. And finished with all hormone-related treatments! Cancer has outsmarted them all in no time!
I got the choice between taxol or epirubicin. With taxol I will have to drive the long road to the hospital twice a week, once for the blood work and once for the treatment. If I wanted to come less often I could choose epirubicin - but only 9 cycles as it causes permanent damage to the heart pump. I was heartbroken and chocked that this is going to be my life from now on. I was informed of SE of both treatments, both the temporary and the permanent damages of the treatments.
I tried to suggest other treatments, but the doctor dismissed them all. I was not offered xeloda though that would spare me from the much driving. Operation and freezing/heating are not possible because the metastases are all over the liver. Regional chemo is not done in Denmark. Only chemo-treatments left for me - so soon. I have only been stage 4 since June - and already finished with so many treatments!
The doctor said I was absolutely welcome and free to opt out of it all - that was my choice! If I wanted I could get a scan in 3 month and I could always come back and choose the treatments should I want to do so. He blabbered all this out even though I had not even insinuated that I had this on my mind. When I started crying he became very irritable! I left without any appointment. Right now I'm in a very dark place!
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Kaaborg, my heart goes out to you. I'm in a similar situation where nothing is slowing this beast down. It's scary, isn't it. I do pray they find something that helps you quickly. I admire you at your strength to be able to talk with your girls. I have a 26yo with Down syndrome, at some point I will have to talk to her. It terrifies me. My thoughts and prayers are with you.
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Kaayborg how sad can one get, I'm already fighting the tears all day long. You are so sweet, how devastating. Definitely ask doc to ask as a compassionate access, that you can't afford to wait long…
I cannot even imagined what was like telling the kids. My heart goes out for you. You did good. But just seeing D's girls come to the door when she got back from the Hospital, the long never ending hugs, K what can I tell you?? This new tx has to work.
Lisbet oh my gosh!!! These doctors, don't even get me started. The younger they are I think it's even worse, they don't understand if in their lives they were not touched by close family members or friends going to hell. So sorry of this unthinkable situation.
Z not so lucky, that guy never showed up! Love the picture of ur DD at the beer stop, sure, I always knew you are the best mom 😉
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Z - I had to laugh, the best to you on your journey in Japan. You said... "We have a one temple per day cap during this trip as there are quite a few and there is a limit to what a 11 year old can take, temple-wise."
Kaaborg - I am hoping you are able to get a covered treatment for a year or so, that the manufacturers will have a compassionate patient program to do so. When my ins would not pay for Ibrance - the approach to get it was not done correctly and we went round-and-round. But the manufacturer had a program and I was accepted, the income allowance was in the 6 figures, very lenient.
NKB - if I may jump in w mho, please. You asked someone else, "Do you think that there is a subset of people who are actually killing cancer with the Ibrance/Faslodex or femara vs just causing a big pause that will eventually mutate and recur-or just that the pause is longer for some people." And with my personal experience and all I read on forums here and two other forums and in reviews.... I think there is a short burst of killing cancer followed by a pause and then rapid mutation. But that is my experience. I think for some body-types, so so speak, there is a real effectiveness. There has to be - the advertisements and commercials are so promising. Trials must have been encouraging, right?
Lisbet - May he go into the bonfire of the goddesses https://community.breastcancer.org/forum/7/topics/... and you are very welcome to come over to the STEAM ROOM to vent too, https://community.breastcancer.org/forum/102/topic... it is deserving, some doctors just have this massive callous on their hearts, why? to protect themselves or why? I don't know but I hear this a lot. When we say, "Yes, but..." and they come unglued and uncommunicative, it is intolerable. Of course, you can yell anywhere, encouraged, but those are two favs of mine. Let it out then try to let it roll off for now anyway, you have enough to deal with without hauling him around on your heart and shoulders.
Lisbet, why aren't you being offered Xeloda chemo? It is a chemo, don't let him confuse you. It can be very effective and simple. Do they assume it is not enough? Being your liver mets, and since Xeloda is processed in the liver it seems a likely choice. Is there anyway to have another oncologist asap? besides him? Or are they assigned rather than chosen?
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z~ nice picture! Best to your trip and the treatment! Please post more pictures.
Send prayers to everyone for thetreatments and scans!
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Lisbet, I am sorry that the oncologist you met with was such a jerk. I do not understand why people with no compassion decide to pursue a carrier that intimately impacts so many lives. Does he really think that you or any one of us would be likely to choose to "opt out" after only one treatment of just three months? He was irritable when you cried? Did he expect you to smile and say "thank you?" I am so upset for what you experienced. WHAT IS WRONG WITH HIM? DID HE NOT THINK ABOUT WHAT HE WAS SAYING? Is Xeloda not available in Denmark or does that doctor feel that it is not an appropriate choice for you? Is it possible that he feels that using a stronger drug like taxol would knock down the cancer more quickly? Would you be a candidate for Xeloda after a period of taxol if taxol is effective? There are many people on these boards who are being treated with taxol or have had it in the past. It can be very effective. Is there any possibility that you could have the blood tests and taxol on the same day so you wouldn't have to make that long trip twice a week? Perhaps they could make some arrangements for that under the circumstances since you live such a distance away. Is there any way that you can see someone else? I know that you are not able to choose your own doctor, but is a second opinion possible? Even if he or she makes the same recommendation, the other doctor might be more willing to have a better discussion with you. Is there a nurse navigator or case manager at the center? If there is, you should call and tell them how today's doctor made you feel. That person could also help you in this situation by setting up an appointment with someone else or helping to arrange tests and treatments for the same day. I feel such anger for the way you were treated and such sorrow that you had to experience such treatment. I wish I could give you a big hug. Please don't give up. There are options for you. We are here ready to listen to you and give you support
Hugs and prayers from, Lynne
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Lisbet, BluebirdDE brings up a good question about alternative chemo though I can't speak to the treatments that you may or may not be offered as I have a different tumor status. What I did want to drop in is about the blood work. Since it sounds like it is a long drive for you to get to your medical center, perhaps you can inquire about doing the blood work onsite same-day. I have done Taxol twice for a total of about 6-8 months and every time I did the blood about an hour and a half before the chemo infusion but always on the same day at the same medical center. They can get results quickly if they want to.
Alternatively, perhaps there is a local medical center at which you could have the blood drawn and the take the results with you when you go for chemo. These are pretty straight forward blood tests - as far as I know - so they should make some effort to make it more convenient for you. You shouldn't miss out on a good treatment option because the driving was too much when there are likely accommodations they could make for you. All that said, I have also found Taxol to be quite manageable. Of course, we are all different so we have different reactions to the same drugs but it wasn't nearly as bad as I feared and it did knock the cancer back both times. Best wishes to you.
Margarita
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Dani came home late last night, she was resting ok today. She went through a major ordeal and nightmare. All this, because Memorial Sloan in NYC, THE place to go for Cancer Center had no clue how to take care of her. With an ER similar to what one would find in a 3rd World Country. Docs that are rushed, and don't have a clue about emergencies.
She came in with clots when she was able to pass some minimum urine, and in extreme pain. Then she could not pass at all. They sent her home in the middle of the night, because they said the CT would only open up at 8 AM. She went home and half hr late she woke me up saying she's gonna explode and in so much pain. Back we went, no scan till 2pm. Then, all hell broke loose. They saw she had a large Hematoma, so as soon as she got back to the room, the urologist team arrived, and they had to irrigate. It's a crazy thing,a catheter go in with 2 like faucets, one for saline to go in, the other for the clotted blood to come out. This went on till the morning, with a nurse coming in every 5 mins to make sure she gets the saline in, so the blood does not get clotted. Dani was in so much pain, and the place ignored her. She kept saying I'm not just numbers, the HGB was not at a dangerous level, so they did not take her seriously, then when it fell below 7, of course they ordered blood stat.
She did not eat for over 2 days. Not a thing. They did not want her to eat, not knowing when and what surgery she would need. She drank a bit the first day, nothing the 2nd day. She had the procedure in the pm, was in the surgery dept. They were successful. They Cauterized the blood vessels and sent a 1cm lesion for biopsy. They have no idea if it's malignant or not. It will take about a week.
There was attitude galore over there. We fired a doctor at the ER, he did not introduce himself, and just wanted to go straight to touching her belly, (because he needed to fill out paperwork that he saw her b4 CT), she's like YOU are NOT touching me, we called adm. but got a patient rep, she understood, spoke to him, then told us she understands but it needs to be done otherwise WE will delay tx, I said YOU are not threatening me right?? We know we have a right to refuse tx blah blah, she was like hmm sure, I did not mean that, let's just 2 mins later another doc appeared. Yep, and many more such idiocracies.In the meantime she is off treatment. Trial Onco called, there was progression of the liver in the CT that they took for the bladder, and the markers and enzymes are going up so it's in D's best interest to stop the tx. Yeah, I've been telling her, hey the #s are not going in the right direction.
Now, we are hoping former Onco should respond and see what could be done. D is in no mood to get chemo, which the trial doc said she'd probably get now, I mentioned Immunotherapy Onco said they are looking which trial would accommodate her. And she really can't afford to be off a/t. We are just floating, waiting for a miracle.
Thank you all you beautiful people for your caring and encouragement, I felt your positive thoughts.
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Mom, Ugh, you and Dani have been through so much. I am sorry you had to go through this latest experience, too. It is unbelievable that they sent her home in the middle of the night. Under the circumstances, I would have expected them to admit her for observation and pain control, at the very least. I am surprised that there was no one on-call to do emergency CT scan regardless of the hour. I am lifting you and Dani in prayer and hope that a new treatment plan will be in place soon.
Hugs and prayers, Lynne
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Lynne everyone is surprised, shocked. When she woke me up with so much pain I ran out with her, but then just 1ml out I called an ambulance, i was afraid she was in too much pain for me to get stuck in traffic going into the city, it was 5AM, 1 hr after she had returned home. Let's just say, there is a letter I am composing with my SIL to be sent to the CEO. There was so much going there, something is very broken.
Thank you so much for your kind words.
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Mom, I am so floored by the hospital treatment. How does this level of incompetence and lack of care for patients happen?! Makes no sense. I am glad Dani is doing okay now.
Lisbet, I am sorry for your terrible doctor's visit today. I agree, it doesn't seem necessary to have to go on a separate day for bloodwork. And yes, Xeloda is a chemo!! I don't get the doctor's reasoning on why you can't take it now.
Z, glad to hear you are settling in now that you are in Japan. Asahi vending machine pic - daughter buying beer at breakfast time - that is very funny on so many levels. Try the noodle bowl quasi-vending machines too - those are the best!
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Wow, NO1, I am keeping that nurse navigator info for future use. Thank you.
I agree with Cure-ious -- never give up, consider all your options. I remember how lulubee was in a very precarious situation a while ago and she came through it.
Kandy, I too am dreading having to tell my kid the whole story and am waiting for the right time. Even though things are going well for me right now, I know I could end up any time with things looking out of control. (Please let Kandy find an effective treatment!) The point about telling soon enough to help them deal with it is compelling.
Z, the expression on your daughter's face is priceless. "Look, I'm in Japan doing Japanese stuff, hee hee I'm getting away with something an 11-year-old can't buy a breakfast beer in the USA, hi Mom..."
Lalady, that is beyond awesome that you are using your savings in ways that are so meaningful to you and helpful to others, and to enjoy your life. I think you are a role model; whatever the amount of money anyone has, these principles can apply.
Nkb, I think I need to put cat cafe on my to-do list. I think there are a few in the USA.
Lisbet, that doctor's take-it-or-leave it attitude and huge ego trip were unconscionable. What a total jerk. He needs to grow up. Is there any way you can discuss your options with a humane doctor?
Momall, what a horrible experience! It's unbelievable, but I believe you! Brava to you for standing up for Dani and to her for standing up for herself when she was so ill.
First Lisbet and then Dani, treated terribly. What the hell is going on?!
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Mom- I am horrified by this story. Does the right hand know what the left hand is doing? Is anyone her primary responsible doctor? I am extremely thankful that she has you as her advocate! I wonder if it is the "fancy" tertiary care places that seem to have an extraordinary amount of these experiences.
When I was going to some of the appointments with my mom at UCSF I had to get real a few times with the egos that practice there. I think I kinda shocked my compliant with the status quo mom- but, message sent and received, and that did help a few times. Luckily in the ER once, a doctor who had met her before and was getting off shift came over and said hi- and I said can you get her a pain shot-that is why we are here- and we are waiting much too long-she stayed overtime and got her that shot-(vs the plan to let all the docs and nurses change shift and then go get a CT first--ah no!).
Lisbet- please get more help. I don't know your system there-but, it sounds like your best interests are not being served and you need Plan B -different doctor and more options, and all the other suggestions above.
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kaayborg, I am just speechless here. My heart is hurting knowing how stressed and everything else you must be...... I am praying hard for you tonight that they get this figured out and get you back on track. I truly believe you haven't run the gamut on possibilities for Tx. Talking with your girls had to be the hardest conversation you have ever had. Sending virtual hugs to you.
Mom and Lisbet, I just get fried by these stories!!!!
If only we could put them in our shoes for a day. Mom, your case borders on lawsuit if you ask me....Z, when you decide on a plan you sure don't was any time. Your daughter is a cutie!
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mom- you and Dani are in my thoughts. thabk god she has you. I am sorry we can't be there in person to support you.
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scan day for me tomorrow. Hoping madam X is still treating me well. Brain MRI Monday. I hate this. 3 months is never so long and short at the same time.
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Momall - Can't believe the way you guys were treated! Totally unacceptable.
Lisbet - Can't believe it either, it's outrageous. Back in May I was put on Taxol because my liver was full of mets, too many too count. I asked my MO at that time about Xeloda but she felt I needed bigger guns. Scan in July showed some improvement but will have results of last week's scan today. If there is progression, Epirubicin will be next, if things are stable, I will continue Taxol for 2 or 3 cycles. MO is also looking at Xeloda in the future. Xeloda is excellent but sometimes MOs prefer to use bigger guns to start with. I wish you the state of the art treatment you deserve.
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leftfootforward: hoping for good results on your scans.
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mom: what a terrible experience. I just don’t understand how healthcare providers cannot be compassionate and caring. I have seen so many bad examples.So glad you are Dani’s advocate!
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Bluebird DE- your theory of how Ibrance works is what I was suspecting as well. Wonder if Abemaciclib would be different- Lilly says that they "completely eliminated cancer in 16 patients over 2 studies." (semantics?)
Shetland- would you consider Abemaciclib? the literature said it could be used on Ibrance failures (and also without a hormonal) since it works differently.
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Nkb - I have been following abemaciclib closely, as SP and I both had Ibrance fail. It works on same CDK 4/6 pathways, but appears to really work well on 4 and can be used as a mono drug, which is encouraging for ladies whose cancers are A/I resistant. It is on my topics to discuss after scans with my onc on Nov 14th. FYI Dr. Glaspy at UCLA (who did palbo studies) said I was not a candidate for ribociclib after Ibrance fail as they are too closely related, but I'm hoping to hear differently on abemaciclib. Looking at Xeloda too depending on scans. More choices are good for us all.
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Lalady- very interested to hear what your MO says about this. Wonder if UCLA is doing any studies adding immunotherapy to a CDK4/6 inhibitor?
I think that animalcrackers is doing ribociclib after failing Ibrance. interesting. yes, choices are key!
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