How are people with liver mets doing?
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Shetland, that's a GREAT response! I think I'll start using a variation of that: "My job is dealing with all these wretched chemo SEs so I can live a couple more years."
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How DO you make choices and plan for the future financially when you know you don't get to live that long but you just don't know how long? My circumstances are different, being so very far from retirement age but the same basic question looms. It drives me crazy. Crystal ball anyone? I think ultimately I'd be too afraid to look into it even if there were the option.
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Kaay,
It's a REALLY hard situation. DH and I went to a Social Security seminar recently, and basically the speaker said when it comes to filing for your SS, you're betting either for or against yourself. We're talking NORMAL people here. If you think you're going to live a long time (say, well into your 80s) then you want to keep working until you're closer to 70 and not tap into SS until then. But, if you don't think you'll make it to even 70 (e.g. you have "co-morbidities" like heart disease, hard-to-control diabetes, COPD, etc.), then you might as well retire at the earliest age you can (62-63).
But that's not OUR REALITY. I'm only in my 50s, and just making it to 60 with fairly decent quality of life will be a struggle for me given that I have both extensive organ and bone mets.
Lots of women with bone mets live 7 years or longer, and Stephanie, who has liver ascites and other issues, is a long-term survivor of more than 20 years! So who knows what will happen to us? We could live 2 years or 10 plus. It scares me, too. I have a little money saved for my retirement, but not nearly enough. Living in California is expensive. Fortunately, we don't have too much credit card debt, but we're dealing with what just about every body else is dealing with out here in CA. We took out a 2nd mortgage to have some much-needed work done on our 50 year old home, so the house isn't paid off yet. We still have a daughter in college, and a car note to pay off.
My husband is a little older than me, and he was planning to retire in a year or so - provided I was still working full time - and now that's not the case. We can't wait to see our financial consultant. Hopefully he'll be able to help us plan a bit better.
I try and comfort myself with the thought, "The Lord will provide," but it's really hard.
Lita
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Kaayborg,
That's exactly my question- how do we plan for the future when we know it likely won't be that we live to 80. I work at staying in the present moment and being grateful for each but this work-retirement-disability thing is difficult for me at this point. Of course things can change at any moment or with any scan. And it does bring up fear.
Lisa
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For me, just looking into all the ramifications of applying for SS is daunting. I need to go back and read pages and pages of rules to make sure we are making the right move. I can still work right now and think it is good for me. But I know the time is coming where I won't feel well enough to continue. It is a rather stressful job at times. Most of our retirement is in our home equity. If we could downsize we would be in a better position. We are trying to sell but it is not happening. I still want to travel a little while I still feel well. My Dh wants to pull out some equity so I can quit and take some trips but I worry about leaving him less secure. I want him to be able to help our children too. We have life insurance but not a million dollars. Too many decisions and it's stressing me out.
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Here's an old bco conversation on the topic of Social Security, Medicare and MBC:
How Many Stage 4 Girls are getting SS disability..
https://community.breastcancer.org/forum/8/topics/...
I will bump it, so it moves up to the Forum 8 active topics.
Best, Stephanie
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Hi Lita,
I'm glad you're speaking with your financial advisor soon! It sounds like you have personal/family concerns that s/he might be aware of. If you have particular questions about estate planning, please contact an estate planning attorney, an elder care expert. Not all financial advisors know the ins and outs of these laws. The Cancer Support Community should have a good referral system for estate planning resources too.
Just a bit on what you wrote:
It's going to be a REAL challenge when Social Security disability kicks in next year (it takes 5 months before you start getting payments). Sadly, it will only pay one THIRD of what I was making. We'll have to tighten our belts.
SSDI starts paying 6 months after your disability date, which is when you stopped working, whether or not you have a workplace short-term or long-term disability program or are on SDI, California's state disability program (not all states have disability programs that are paid by employee contributions. Here's a link to the CA SDI FAQ page - http://www.edd.ca.gov/disability/FAQ_DI_Benefits.h...)
Many workplace programs will require you to accept SSDI starting on your eligibility date, so good to review that policy.
Medicare begins 24 months after SSDI payments, so you'll need to maintain insurance coverage through your spouse, employer, COBRA or other program like the ACA or private insurance.
If others are thinking of going out on disability from your employer and using COBRA for medical insurance coverage, please tell your employer's human resources department before you leave on disability. You can get an extension, if you opt for it sooner than later. https://www.cms.gov/CCIIO/Programs-and-Initiatives...
Check this out, don't take my word for it!
I am not a licensed professional - financial, legal or medical, but encourage everyone to get necessary professional opinions before you risk your life savings, as well as your life!
Healing regards, Stephanie
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If you're interested in self-educating on the topic of Health care financial assistance programs, there's an excellent conversation of nearly 40 posts at Smart Patients (SP):
https://www.smartpatients.com/conversations/18013
Free registration required.
It's easy to skim for information related to financial survival - everything from help with expenses to Medicare programs to staying alive. The conversation is tagged "crossing disease boundaries" and it certainly does. SP's resources for the breast cancer communities are not as well developed at the bco resources, but their "crossing" tag is extraordinary!
More best, Stephanie
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hello ladies. Havnt been on in awhile so wanted to stop by. After one clean scan and no treatment for 6 weeks another clean scan. My markers went from 18 to 39 but since scan was clean Dr said probably normal and some possible microscopic cells he decided to do one more cycle of halevan and check markers again and then decide on maintenance treatment. When I asked what the radiologist said in his report dr says the rad guy saw no disease in liver, lung or rib. I hope it lasts!! I had to shave my legs today so thats good, hair coming back. Wishing you all well!!
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LivinAZ - So very pleased with your results. Did I hear no evidence of metastatic disease, or no tumors anywhere at all?
>Z<
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Hi everyone,
My wife Pauline has metastatic breast cancer with mets on the liver, various lymph nodes and bones. The main concern right now is her liver, where the mets are growing rapidly. Her bloodwork last week showed very elevated liver enzymes, which could be due to the cancer or to the trial drug she was just pulled off of. The doctor thinks it's probably from the liver tumors. Her onc wants to start her on chemo this week to get the liver under control, and it is my understanding is that she is in a tricky spot because the chemo could stress her liver too. We are meeting the onc today to talk about options, but before then I'm trying to read up on the chemo options available to people in her situation. What chemo treatments can be used for a person who has a compromised liver? She has already had AC/T chemo when she was diagnosed at stage III last year, so I know the Adriamycin is off the table. I'm a bit nervous that she's be facing one of the tougher treatments, given the aggressive nature of her cancer.
Thanks so much.
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Hi gp,
I have a similar diagnosis to your wife's. I have been treated twice with Abraxane with good results on the liver tumors.
Good luck to you both!
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zarvoka, they both said no disease seen in areas where there were lesions. I didn't know there was a difference? 😣 but if Dr is happy I'm happy.
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hi gp. I started with abraxane after 5 months spots were seen on liver and markers went up so I started on halaven and 7 months later babe had 2 clean scans no disease in liver. Halaven was my magic bullet there are many options its finding the right one. Hang in there something is bound to get it under control.
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Thank you for the replies! The nurse mentioned Halaven as a possibility so I'm happy to hear that worked for you too.
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gp - the good news is that aggressive cancer responds well to chemo. you should have a lot of good options, there are probably a handful of chemos that will knock your wife's cancer to the curb. the instincts of your oncologists may be the best thing to follow, but one thread to pull is personalized medicine. You can biopsy the tumor, cut it up into pieces and see what drugs it responds to. Or you can analyze it's genetic makeup and see if tumors with that genetic makeup respond to a given treatment.
Some things to read and consider following up on with your doctor.
MDAnderson's Knowedge Base for Personal Therapy
The lab at your nearest major cancer center may be as good or better than any of these commercial services and do a better job. Memorial Sloan Kettering has a tumor genomics test that is very good and possibly cheaper since it is an active research project. I noticed that you are in NY. If I were near MSKCC, I would be there hounding them for clinical trial options and advanced techniques like personalized medicine. This may not be what your wife needs now, but you need to start the conversation so that you are prepared for a possible next step.
>Z<
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Lvin, I am out of this world excited to hear this fabulous news for you! May it last and last!!!
Gp, I've got oodles of cancer in my liver (started with 2 nearly 10cm tumors and innumerable others) and haven't had any issue with chemo stressing it. Chemo majorly helped get everything back under control. I've had reduction of tumors or stability for over a year now on gemzar/carboplatin (now just carbo). There should be many options for Pauline and no reason to believe that the chemo will be harder in these circumstances than what she may have experienced before. I've felt great since starting chemo (only bad prior to). Best wishes for speedy disease control!
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We just finished with the onc here at MSK. She was torn between gem/carbon and eribulin, but said she's seen more adverse reactions related to the liver on eribulin. So, Pauline will be starting the gem/carbo tomorrow on a 2-week on, 1-week off schedule. Let's cross our fingers that the liver mets listen up!!
Kay, thank you fo your reply. I'm relieved to hear this treatment was effective for you in a similar situation.
Gina
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So I'm joining in on this thread. My cancer has now progressed to the liver. I was so sad that it got tired of the bone and moved on. I started Afinitor/ Aromasin last week. Really would like some input on any experiences with these 2. Wishing you all the best.
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Welcome Kandy. Sorry you are here but as you can see from all the people here, liver mets are beatable.
>Z<
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GP--From one MSK husband to another, I wish you two the best of luck.
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GP - I wish Pauline the very best with gem/carbo. It has been a miracle drug for me and I do hope the same for her. Does Pauline have a port? In not, I do recommend getting one. Gemzar burns a bit during infusion (which I managed happily enough) but it ended up giving me phlebitis (which I was not so happy about). Sore and painful veins at the iv sites lasted for weeks even after I got the port. With a port though, all is comfortable during infusions and veins eventually returned to normal.
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Gina, no treatment advice from me, just warm waves of love for Pauline and you as you move deeper into unknown territory.
May you find your miracle treatment that brings restored health, longevity and quality of life.
I sound like a fortune cookie.
May good fortune be yours!
Love & light, Stephanie
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Kandy, That sucks. I'm sorry you have this new something to deal with. As these ladies said and I am counting on, there are a lot of treatments that have kicked liver tumors OUT, so hang in there. You can do this....
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Thank you everyone for your kind wishes. The infusion went fine today, so now we will just keep our fingers crossed that the chemo does it's job. Kay, our chemo nurse diluted the gemcitabine to minimize the burning sensation, and it didn't both Pauline too much. She did say that Pauline has good veins now, but that if it gets harder to place a line in the future she'd suggest a port. I think that's probably a good plan if (and hopefully) long-term chemo is in the future.
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So i don't have very good news and I need some advice about a family problem:
A week ago my brain MRI came back with 3 lesions. One definitly but 3 more than likely just not exactly sure. I have the CYberknife surgery tomorrow. My mother lives in Missouri, way north, closer to Iowa state line. and The first time I called her she said she wanted to come out. when I had my meeting with my neurosurgeon and knew more, I called her again and ask if she still wanted to come out she said yes. So, I picked her up at the airport sunday evening. 24 hrs later we were having a big fight about....(and this is what I was told) how I'm selfish, self rightous, a snob, condescending and how I don't include her in anything (mind you she lives 2000 miles away) and how we've (meaning my sister who lives in Reno and her) have wanted to tell me this for 3 years. An arguement the started because I was in the ER all day on Friday due to excrutiating pain in my soulder and abdomen (i have mets to my bones, liver and now brain). My sister got upset because she wasn't called first. My friend came to take me to the ER. actually, before i could call my sister, my friend called and she was on her lunch and could take me. my friend is in a position where she can change her schedule whenever and however she wants, my sister is not in a postion like that. However I do call my sister first when something is wrong etc. I just don't like taking her away from work (my sister has recently lost a 10 yr position and in her walking papers ' having an ill family member causing ms. adams to leave frequently' was one of the bullet points. my sister never signed up for FMLA and therefore i was blamed for her losing that job.) So now 3 yrs later i still don't like taking my sister away from her job and call on friends to help when I need help. My sister is dependable when its conveniant for her.
So, sitting at my house, my mom is here to help me with cybeknife and a change in chemo. my sister gets mad because she wasn't called first and I ask her how sick do i have to be for her change her plans. I was referring to she was having a dinner party at her house on Friday night and therefore she had to leave the ER at 5:00. expecting my friend who left work (who also has a family of her own) to stay and give me a ride home at who knows when. my sister wants to be called first, be the first to know but not be the first to make adjustements to her schedule. It's an inconvenience for her. I apologized my cancer is such an inconvenience i said. she told me to "F off" and walked out, screaming "its not all about you!" on her way out the door. I sat there with my mouth agape having really know idea what just happened and My mother simply states "she's tired of you making her feel guilty. and I'm tired of it too." my mother actually said this, I make them feel guilty.
i'm stunned. I'm having cyberknife surgery in 2 days, starting a new chemo cuz I have progression everywhere and now they tell me 'you make us feel guilty' and they've been wanting to say this for 3 years. BAM!! right before I'm having surgery, a minor one at that i understand but I am still scared to death One I hoped my mother could be there to help me and comfort me. I'm doing this all alone, multiple chemos and scans every other month, alone.
Apperantly I make them feel guilty because I don't call them first or include them in everything (in my defense that is utter rubbish). I defend myself explaining that i don't want to be a burden so I ask lots of people for help at different times. and my mother lives 2000 miles away so quite frankly what is she gonna do. My mom and i proceed to get into an arguement where I am defending myself most of the time but a few very hurtful statements came through..
"you don't know grieving! you never wanted a child in the first place so you don't have the right to grieve!" (i wanted to wait till I had the right man in my life to bring a child into this world not because i didn't want one.)
i watched my mother mock my pain. she cradled her shoulder, cupped her abdomen, put her hands over her back and said "poor shelby and her pain" . (if anyone who knows me knows that when I go to the ER its a big deal, especially for pain.
She kept saying I'll never change but when I asked what I needed to change she couldn't give me an example. She repeatedly said I was mean and cold and again asked for an example and she couldn't. I would say Please tell me what i did wrong and she would respond with "you know what you did."
This type of attacking went on back and forth for 45 min. and After her last display I told her to get out. She was staying in my spare bedroom and I refused to be talked to this way by anyone. I said I can't do anything right in hers or my sisters eyes and if they feel guilty about something they did or did not do, it's on them not me. It is not my responsibility to make sure people are comfortable with my cancer.
I am absoluetly beside myself. I'm very hurt and can't stop crying. I have cyberknofe tomorrow at 10:00 and am just asking am I wrong? What could I have done diferent? where did this come from? I'm sorry this is so long. I just don't know what to do. I have been to therapy for the last 2 years talking about how to deal with my mom and sister and what I've learned is it's not my responsibilty to make sure people are comfortable with my cancer.
any advice or comfort you can give is appreciated.
shelby
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Oh, Shelby! I am just in tears to hear that you are having to deal with this kind of emotional agony. It is the job of family and friends to ease your pain, not increase it. Our families do have their own grief to bear and their horrible behavior likely stems from it but please know you are NOT in the wrong here. They are very, very WRONG. So wrong! Without excuse for their behavior. An apology is owed to you but my advice is not to wait for it before trying (TRYING) to forgive it, letting go and moving on. This is for your benefit of your own heart, completely apart from them. You need to live a happy life and cannot hold on to this ugliness. I hope they will come around. Please know and think of the many who support and understand what you are going through.
Thinking of you as you march onward in your treatment and find stability again. Reach out always. We need each other.
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Shelby. Hoping all goes well with your cyber knife today. I am at a loss for words as to how you have been treated by your mother and sister, unbelievable. It sounds like you have some very good friends in your life. I think I would stick to them for the time being. You don'5 need the stress your sister and mother are causing you! Love, glenna
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Dear Shelby,
How agonizing for you!
Shelby, I can't know what is happening in your mother and sister's hearts and minds and have only a small picture of your own turmoil. They can't be there for you in the way you need. They can't be who they aren't and aren't likely to change suddenly, based on your need.
You won't quickly solve this recent upset that they say is part of a bigger situation Even forgiving this most recent scene within yourself or with them won't happen immediately. The situation is too knotty to untie now and you need to recenter before your big procedure.
My biggest concern is for your immediate well-being. What can you do to achieve physical and emotional distance from your mother and sister NOW?
Can you continue to lean into your friends who do show up to support you? How can you recreate a sense of inner peace and harmony for yourself? What do you need now? How can you prepare by nurturing yourself? Can you care for yourself emotionally, sleep, eat well and connect with those who show their love by showing up and caring about you? Self-care seems imperative and well earned.
Perhaps you'll deal with your mom & sister later, but for now your work is clear.
Focus on changing who and what you can, yourself, and please leave rest, including your relationship with your mother and sister for another, better, day. It's your right to control who comes close to you and cares for you now.
warmest healing light and loving kindness, Stephanie
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Shelby-
I am so sorry to hear this. Right now you absolutely have to be selfish. You have to take care of you first.
Your family has no way to understand what you go through every day. They are most likely feeling helpless. It's unfortunate that their way to process it is to blame. I hope that they will eventually come to a place where they are able to help you.
For now, rely on your great group of friends and take care of you.
Hug
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