How are people with liver mets doing?
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Left foot and we are so proud of you!!! You'll represent all of us well!!!
Good luck
Bab
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Left, awesome opportunity! I would just say to speak from the heart and you can't go wrong. People want to hear your story and are not looking for an eloquent orator, just some insight, as imperfect as it might be. Don't worry if you cry . . . or if you don't feel emotional at all during the speech. Just speak from your heart and you will rock it out of the park!
I have had to do public speaking about my BC experience and people really seemed to appreciate the honesty. Also, sharing some of the details about what you go through and your thoughts as you go through it tend to make BC more tangible, relatable, and less scary for people who view it as some big, bad unknown beast where everyone has the experience they have seen on TV.
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Hi everyone,
I want to thank you all for the helpful information and kind words of support! Pauline's side effects coincide with her starting on the new trial, so it's very hard to tell whether they are related to the drugs or to the cancer itself. For instance, nausea and pain where the bone mets are, as well as liver pain/discomfort and some distension of the stomach. I think it's harder than we realized to deal with the uncertainty of the trial since we don't know if she's getting a placebo. That, plus the way fulvestrant is affecting her mood. This is tough!
Lisa, thank you for your pep talk. I know it's hard on us both but sometimes I wonder if it's harder emotionally on the spouse/caregiver since we know we have to carry on no matter what? We also have a 4-year-old daughter who is a wonderful distraction but who also compounds this tragedy for us. I have gotten great support through Cancer Care here in NYC and I will look into the Cancer Support Community as well. I have learned that speaking out and talking about my feelings is the only way through this experience.
I hope you all know how much I admire your fortitude going through this crap journey.
Gina
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Gina, We have a Cancer Support Community Center about an hour from where I live, and I've gone to a few seminars there on what to eat, how to deal with a changing body and how we feel about it (the sense of betrayal, the anger, etc.), and how to dose and take medical cannabis to relieve pain and SEs from cancer Tx.
Definitely look into your local Cancer Support Comm. They are a great resource for patients AND caregivers. I also go to a support group that is open to caregivers, and sometimes just the caregivers go without their charges. It's important for caregivers to get out and do something just for themselves to relieve stress and get their minds off of Mr. Cancer. We all know that when one member of the family gets cancer, EVERYONE gets to deal with it. You're in this for the long haul, and you have to take care of yourself.
Your 4 yo probably doesn't understand all the ramifications of this...only just why Pauline can't play as much and doesn't feel good.
Hugs and prayers with you both!
Lita
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Gina,
I do think it's harder on the caregiver. I can't imagine how much more difficult with a little one! Our Cancer Support Community offers a dedicated caregivers group (as opposed to a drop in type) that Pat attended for about a year while I attended one for the patient. With my progression I see her struggle and am nudging her to go back.
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For everyone: Support groups are essential for everyone's well being. It has been documented that support groups enhance quality of life. Patients who attend groups have a better overall outlook - they live longer, tolerate SEs better, and are more positive. Caregivers receive strength and feel that they aren't alone and not so overwhelmed.
Another suggestion, for what it's worth: Get help around the house/yard if you need it. Don't let pride or other issues get in the way. I was always like "Nobody can clean/prune the roses/cook like I can." Toss that thinking out the window! We all have enough to deal with, especially those who STILL have to work while dealing with all of this. Fortunately, my husband was able to take advantage of FMLA (Family Medical Leave Act) for the first couple of months after I was Dx'd. I couldn't bathe or wipe my own rear because of the nerve pain shooting up my bacl from mets strangling my spinal cord. Once I finished radiation and got a handle on the Xeloda, he was able to go back to work. We now have a gardening team to tend my beloved roses (I have about 20 bushes, and I REALLY miss taking care of them, but the MO says absolutely no gardening while I'm on chemo). We also have a board of deacons at our church who can bring us meals when things get bad for me.
So don't tough it out when you don't have to. If people offer to help out, let them! It will take some of the pressure off and help a little bit of the stress dissipate.
Lita
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hi! I just posted this on the herceptin/perjeta thread, but please let me know if you have any advice:
Help! Pretty please. Dr wants to drop chemo ( navelbine) and have me stay only on herceptin/ perjeta even though yesterday's scan shows a small increase in my main liver tumor size (from 2.4 to 2.9cm) and suv.
She said, all the other spots are gone, so maybe all you need is a break from chemo so your immune system can take care of this one. What?!?!?
I have my regular appt next Tuesday and I plan to tell her that I disagree, but what do I do if she doesn't want to me to stay on navelbine for a little longer? Do I go downstairs get the h/P infusion and find another Dr? Sigh.
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Gramen, others will want to chime in, but I've been told that chemo stays in your system for a while, and it can keep killing the cells after you go off of it. Do indeed ask your MO why she wants to do this after expressing your concerns against it. Never forget that the drs work for YOU not the other way around. You have a right to know the rationale behind her decision. It wouldn't hurt to get a 2nd opinion either.
Best of luck,
Lita
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Here, here, Lita.
I am/was a Type A personality....the 'I got this' type.
Well, cancer made me change my mind and I discovered that people are more than happy to step up, JUST LIKE I WOULD IF THE SHOE WERE ON THE OTHER FOOT!
I've had people drive me to appointments, get my meds from the pharmacy, get a single pint of chocolate ice cream, go shopping with me, get in the shower with me (my BFF), lots of people have cooked for me, helped me get my shoes on, pray with me, I could go on and on, and probably not remember all the amazing gifts of assistance. I've even asked strangers to help me at the store when I couldn't pick something up. No one has ever refused a request.
As I mentioned people are more than happy to do just about anything. I just have to be willing to tell them what I want, which can feel very vulnerable. With practice, I got used to it.
You could too.
Much love to you all, no matter what's going on.
Patti
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Hi Lita, Patty and other liver mets friends,
One topic that's near and dear to my heart is the usefulness of personalized support groups that care for the carers as well as caring for us cancer folk.
Back in pre-Internet 1996, my friends started a Share the Care group for my partner and me, having heard my end was near. That group continued for 10 years, gradually dissembling as my primary relationship broke up.
In 2012 there was more very ominous news and that group re-assembled (includes my ex-partner) with many new members using the same model and many online resources including lotsahelpinghands forms for managing caregiving tasks, calendars and participants' needs.
Also, mylifeline.org provides free blogs for folks with cancer that allow carers to keep in touch. Mylifeline is much better than carepages or caringbridge, if you are concerned about privacy, ownership of what is shared there and commercial-free space.
BCO and other online support groups like bcmets.org and smartpatients.com are also incredible sources of free, online support. smartpatients doesn't have a strong breast cancer community, but for cancer geeks who want to cross disease boundaries, it's an incredible resource.
And I'd be remiss not to mention my cancer home since dx with advanced breast cancer in 1992 - Commonweal's Cancer Help Program. Their outreach program includes similar programs and resources, but also Healing Circles communities that meet all over N. America.
Thank you for allowing me to share these resources. I wish this post weren't hidden away in just one community. Maybe I'll find a more central place to share it with other bco communities.
Healing regards all, Stephanie
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Thank you, Stephanie. I saved this information for reference.
Intothewoods, what about tamoxifen with Ibrance as a future treatment? It looks like you haven't been on tam, and I think I have heard of this combo.
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Gramen - I would get a second opinion at any significant treatment decision, but always if I question a doctors opinions. However, I wouldn't go and argue with your MO. She has a reasonable position and she is just telling you what she believes is the best course. That difference in the size of the met is well within the combined error of the machine and interpretation. It would not meet my definition of progression. Holding back on the treatment and monitoring is something you should consider. The treatments are hard and can do more damage than good. But if you are not comfortable with stoping the navelbine, you deserve to get the perspective of another doc or two.
>Z<
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thank you Z, I'm going to make an appt for a second opinion with the same Dr at DF that recommended to start off with my current regimen.
I recall you mentioning that you were trying to get all your records to a major cancer center for when you need a second opinion. That's a great idea.
At this point I'm tired, more mentally than physically, so I'm hoping I can get an appt soon and that all it takes is bringing CDs of my scans/lab summaries which I already have.
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Disclaimer: strongly worded response based on my own mis-adventures. It's what I've learned in the school of hard knocks! - best, Stephanie
Hi Gramen,
I hope you'll consider changing your game plan for getting a second opinion. This is the complete opposite of a regular doctor's visit. If you are seeing a specialist, s/he has lots of training and very little time to spend with you. S/he won't have your medical records at hand, unless you do the ground work now.
If you come to the appointment with a few of the records that you have on hand, you will have underprepared for what may be the biggest examination of your life - an exam that may save, extend or improve your life.
Please do the following:
Contact your current doctor(s) and sign any releases to the institution you will be visiting. Ask them to send the necessary records to your second opinion doctor(s).
If necessary, pick up records and/or imaging test results from your current doctor(s).
Contact the office of your second opinion doctor(s) and ask if there's a release form you can sign, so they can get your medical records. Ask what they can already access by shared EMR (electronic medical records). Ask what supplemental records they need - biopsy & surgical reports, treatment notes, imaging exams, office visit notes, blood tests, etc..
Ask if they have someone on staff who can help gather the necessary information, so the second opinion doctor can study for the exam BEFORE the exam.
If you walk in cold with incomplete or irrelevant records, you're wasting everyone's time.
Remember, any consult isn't about treating cancer, but about treating you. Please don't make yourself a victim by under-preparing for this most important exam.
Find out what's needed now and get to work getting it together for then.
From my long personal experience, this will lead to better results for everyone.
btw, in 2012 when I went to UCSF for a second opinion consult, they had an intern who gathered records, reviewed them, called me to fill in the blanks, prepped the doctor and participated in the in-person consult. It sure made everyone's job easier.
Please, take the time now, Gramen!
Best healing wishes for all, Stephanie
This is one exam you can hardly over-prepare for and under-preparation may be hazardous to your heath and well-being.
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THANK YOU Stephanie! I will find the energy and get everything.
That's what's so wonderful about Dana Farber, when I called this morning that's exactly what they said: we need everything since you were here last April, including doctor's notes, imaging, labs etc...they said if the Dr can see me soon I could hand carry the records.
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Hi Gramen,
Glad you're willing and able to prepare for the exam and that they gave you a good checklist of what to bring!
For my information, do they want you to hand carry your records to them before the exam? Or bring them with you to the exam?
Going to take a nap now and will rest easier knowing that you getting good advice for a good consult.
warm healing wishes, Stephanie
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Dear Stephanie,
Thank you thank you thank you! I recognize I can't get lazy now.
I see what you mean: that the Dr gets the records beforehand to study them. I will make sure that happens.
When I had my first consult/2nd opinion the only thing I hand carried was the CDs with scans and I uploaded those as soon as I got to the center. Then I had the exam 2 or 3 hours later. Everything else was faxed/mailed (pathology slides)a few days in advance. I will do the same this time
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Yay!
Gramen, may you be your own best advocate and engage all your best healing allies to assist in your big exam and projects.
They are experts and will do a much better job when well-informed and well-prepared to help YOU!
You deserve the very best care, Gramen.
healing regards, Stephanie
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Regarding second opinions -- With my first diagnosis I was treated close to home, but chose a second opinion oncologist at a major cancer center, submitted my records, and got a second opinion there. Later, when I got fed up with my MO, I started seeing the MO at the major center while getting labs and imaging closer to home. (Looking back, I wish I had just transferred all my care at that point, because I don't think my reports were being sent as requested.) When things turned scary, I was glad to already be an established patient at the big place. I was seen within a week, transferred all my care, and started treatment quickly.
Regarding records -- I like to both send them ahead AND hand-carry them, just in case there are any glitches or computer issues. When I moved to the new cancer center in 2014, I did this and it was easy for me to pull from my notebook the report related to whatever we were discussing during the office visit.
When I went for a biopsy (my second in that quadrant), I gave the team, via the person who checked me in, a printed summary of my relevant breast imaging (mammograms, ultrasounds, and MRI) with dates and brief notes from the reports, so they could easily find the reports and images that would be useful for this particular issue. They seemed to appreciate it. They used my summary in the meeting they had before the procedure, and I felt they could approach my biopsy and evaluation more intelligently with the information outlined for them in this way.
Here is a silly thing that happened. My new cancer center told me I must submit CDs of all my imaging ahead of time, so I made a special trip to hand-carry the discs to the records department before my appointment. But later I found out that all they did is file them at that time, because they won't upload them without an order from the doctor. So I had to let the doctor know they needed the order.
Gramen, I hope all goes smoothly with getting your second opinion, and that you will feel comfortable with your plan.
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Ladies of the Liver Met Channel - Can we all take a moment this weekend to send Gramen some energy to get to the critical appointment Dana Farber with all the necessary preparation and records.
It is hard hard to pull oneself together to immediately after being punched in the gut with diagnosis or treatment change. But that is exactly when you have to get yourself together and fight. It's critical. We've all been there.
I'll do some planks for you this evening ...
>Z<
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Z first off, I am right there with you. Gramen, Dani and I are constantly in this position, so I AM right there with you!!! Best best best!!!
Gramen, just reading your post made me nervous. For sure a little longer on the Navelbine would make more sense. Were your numbers so weak? If not, why not make sure your liver is getting the message
Stephanie, Re: difficult convos, yes it could make a lot of sense. And I truly know that you guys have the best thoughts for us. But I must say it's a bit different when we are talking about young children, or young adults as Dani. From the mid of her 20's she dealt with this monster. She was just starting a life, starting parenthood, a small business. It all came tumbling down. And it's been since then. Of course, we had some great moments and how can we not be thankful of science miraculous advances for the Grace of G od. BUT there was not time to live the life, there won't be a future. It's constant fear of what if this will work and that, she cannot plan for a/t in advance, bcs she is always called in for this scan or that appointment. It's just not business as usual. I, we don't even know what normal is.
Her sisters did not move away as they wanted, and had opportunities, always wanting to stay nearby, always needed. This is the reality.
I just read this book from Will Schwalbe The end of your life book club -writing about his mom's life, death, and she did not wanna leave until…BUT she had so much to look back, grown children, trips, marriages, dreams and Dani had this stolen from her, it just is. Sorry, maybe it's a rant, it's just very, no totally unfair.
Stephanie, thank you for all your thoughtful links.!!
Babs I PM'd you. Did you look at the PM not going through. This is really BS. Aghh you were so happy.
Lisa what is his rationale if you did progress, why is he keeping you on it? And Btw if you go to the Ibrance thread, there are many ways that WBC could be regulated, by different dosages or schedule.
Z I have been asking for them to the AR testing on Dani, and doc keeps postponing it.
BarbD they must come with something
Sanidlee all I could offer you is good vibes. Never liked roller coasters.
Leftfoot is there someplace where we could watch, follow your heartfelt speech?
For the newbies, welcome, hope you find much comfort here. Dani did all these therapies already, she alwasy had SE's. And so it goes.
I happened to ask at the latest infusion, first of the 3 wk Ixempra, about Herceptin, and I just found out she was off it, Hmm, when I emailed doc, I received back an email during the weekend, that she should be on it. Tomorrow we are going to get to this mystery, and appointment with new NeuroOnco. More decisions.
Hugs to all
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HI momallthetime,
Thank you for accepting my ideas to mull over. As they say, please take what you like and leave the rest.
Actually, I became symptomatic with breast cancer at age 34, 26 years ago this month. And I've been dealing with advanced breast cancer ever since.
Although I didn't have children, I was in a new relationship at the time, climbing my personal/professional career ladder, building my savings, finally beginning to travel, doing things that were super important to me.
Cancer wiped them all from my life.
Steam used to rise from my ears when I heard women who were 50, 60 and 70 bemoaning their early stage breast cancer and the short-term interruption it caused them. Sometimes in support groups or oncology waiting rooms, I had to bite my tongue and there steam still rose as I gave them their equal time to kvetch. I'd ungraciously think, but you lived to 40, 50, 60 or older without this taking so much from you.
I don't understand how Dani feels and I imagine she would be happy to live another decade or two to fulfill her dreams and life purpose. Her children and family are already grieving.
I do understand my own experience and am grateful I have finally made peace with it. And with others' molehills that appear to be mountains to them.
It's all a matter of perspective.
I can't know Dani's or yours perspectives beyond what you share here, but you are not alone.
And I do so appreciate your ability to keep showing up for Dani in spite of the terrific pain of her suffering and early death. And I'm grateful she is still here to experience the many joys and fulfillments life can still bring.
This isn't really a rant, but rather a reaching across what appears to be the huge gap between us. Maybe the distance isn't as great as it seems.
love for all, Stephanie
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Bumping for Cvilla, Stephanie
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the article didn't turn out exactly like I had envisioned but overall I was happy with it. Funny what is included and what isn't.
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Leftfoot you are indeed special and you will represent perfectly for all of us. Real is all that counts! Best of luck!
Gramen, It is so much brain work to even think about second opinions, gathering all the paperwork (reams). It's like another full time job...Thinking of you as you make this big step. You will be glad you have rounded up another place to run things through now and in the future.
You are right Stephanie, it is a matter of perspective. Mom. it has to be so heartbreaking and difficult to watch your daughter live through all of this and miss so many things that we all deserve in life. Although I will be 60 soon, have had marriage, children, a career, vacations, I still feel like I am too young and life is very unfair. No matter how much we get we will always want to continue to experience what there is to experience. For me it's my childrens marriages, grandchildren, traveling FAR, finally getting to take a break from working, more concerts, watching old movies. I hope by the time I get there I will be more at peace with leaving.....I hope that a Tx comes along that works for her and you and Dani both get some relief soon.
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It sucks that so many of us in our late 50s get this bomb dropped on us. Your 50s are supposed to be a great decade...we are at the peak of our careers, kids out of the house, planning trips, and we get this instead. Certainly not how i was planning to retire. I had to quit because the pain and SEs are too much.
Lita
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I'm with you there Lita and was just lamenting to my Dh last night. We are FINALLY in such a good place financially, career wise and relationship. Kids are out on their own. We should be able to travel now and enjoy the fruits of our labor but instead we stepped on a land mine! It's so hard...I can still work and it keeps my mind occupied so I don't go mad. But I question whether I want to keep spending my time at my job. When will be the right time, how will we keep up on finances? I get very confused and overwhelmed about it all.
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I'm with you artist and Lita. I've been struggling with whether to spend my time working. If I retire next year at 60 will finances become an issue. And what makes it worse is that is that I feel like I'm in a position this year to really do some great stuff and it's been a bit of a road getting to this place. Now that I'm doing chemo it makes it all the harder being out for 2-3 days a month and then a week feeling quite tired. Sucks!!!
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Artist and intothewood:
My former boss said I could come in 10-20 hours a week, but with all the pain and fatigue I'm dealing with, I basically bit the bullet and got on disability. If you live in CA, you can get State disability for a full year, and it pays pretty well. Not what I was netting full time at my former job, but, hey, I'm not commuting anymore (saving gas), don't have to update my wardrobe, and can cook more meals at home (also saves $). But working 10-20 hours was not going to pay the bills for me (and you would have to sacrifice your disability if you work even part time.). 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.
I do have money that I put into retirement, and I'm going to be consulting with our tax guy as to when I can start pulling it out. With my extensive mets, I don't know how long I've got, but I don't plan to go on any spending sprees - like buying myself a cute sports car, etc. I want to leave some $ to my daughter to help her pay off her sizable tuition.
Yesterday, I spent most of the day in the easy chair because I was so fatigued. And what really sucks is I can't even sleep. It's part of the chemo's SEs - insomnia. It's hard for other folks to understand. Your eyes are SO heavy and you feel so tired, but you just lay there awake. If I'm lucky, I'll get maybe a few hours of sleep after 5 or 6 am, but that's certainly not enough if you have to work.
Take care, ladies.
Lita
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Yup, when people ask me if I work, I feel like telling them my "job" is staying alive.
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