Looking at liver failure, and can't find the words.

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blainejennifer
blainejennifer Member Posts: 1,848
edited March 2019 in Stage IV/Metastatic Breast Cancer ONLY

Up until three weeks ago, my biggest problem were some extensive bone mets in the thoracic spine area. Got those zapped, 15 sessions, and it seems to have been helping.

Then, two weeks ago, some of my liver values popped up, AST and ALT. So, I am gently slid, burrito style, into the PET/CT scan to see what is what. Progression is what that is. Diffuse progression, so there is no clearly defined target to aim for.

Gulp. Due to some compulsive reading, I know this is scary. If your liver can't process chemo, the liver can fail trying. If I don't respond to Gemzar/Carboplatin, I'll start hearing words like "comfort care" and "hospice".

I'm not crazy. I know that I won't last forever on treatment, but I need two more years to see my child graduate from college. I'm sure God is busily putting that in their calculations - "Oh, that's right. Jennifer needs two more years for her one kid. Perhaps I'll take it from this lady over here, the one in Yemen who has a three hour walk for treatment, if the clinic is open, that is."

Luckily, the menfolk are out of the house. DS is back at college. DH is doing his thing in NYC. So, I can undulate around the house for a few days, crying to expunge the sorrow, and to get my mental fanny in gear.

Does anyone have advice as to what the heck to do? I will be seeking a second opinion at Roswell Park. I've already got a berth there, from last year when I wanted a second opinion on some CAR T trials at the U of Virginia. BTW, that trial would be great for HER2+ patients. Not so much for HER2-. Trial identifier: NCT03272334.

I've several other trials identified. I'm not the most popular girl at the party, as I am extensively pretreated, but the ones that could go, I'm putting in for.

I am hoping that by tomorrow, my brain will have rebooted and I might be able to think again. Goals are: 1. Figure out what to beg for should the Gemzar/Carbo not do all that was planned. 2. Pull all strings available/Get second opinion arranged. 3. Arrange 30 minutes of vigorous pouting, then call it a day on that sort of thing. Frankly, I'd rather blast Sandi Patti, and make a joyful noise, etc.

Golly. I have just run out of steam. Going to go to sleep now. Forgive any errors - I know there will be tons. I don't know what I'd do without y'all.

Jennifer

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  • ladinred26
    ladinred26 Member Posts: 28
    edited January 2019

    I have no words of wisdom but am sending u a hug thru the miles.

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  • Micmel
    Micmel Member Posts: 9,450
    edited January 2019

    sending you love and support. I hope the words hospice and comfort care are something you never have to hear. I am thinking of you. Hopefully your numbers will rebound!! Hugs

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  • Iwrite
    Iwrite Member Posts: 870
    edited January 2019

    Jennifer- First off...I hate that cancer is doing this! (Insert explicatives here). Going from stable to diffuse liver mets is crazy. Second...A melt down day makes complete sense. Third...You are doing the right thing in getting that second opinion. And, you haven’t had lots of other symptoms indicating a crisis. Your 2nd opinion docs may have some good clinical trial options for you. One day at a time friend. We are all pulling for you and expecting some promising answers in the days ahead!

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  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2019

    Jennifer,

    Damn. I hope you’re renewing yourself in sleep now and that you will awake refreshed and ready to kick any posteriors that get in your way. Get that second opinion. And turn up the music throughout!

    Tina




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  • illimae
    illimae Member Posts: 5,710
    edited January 2019

    Hopefully, you can find a trial that works wonders! If not, there’s abraxane, which I think is common for pretreated individuals and if I recall correctly, it works pretty well on liver mets. Sending good vibes and hugs. (Also, kicking things because this BS is unfair 😡)

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited January 2019

    Jennifer, we are in the exact same boat. Doxil didn't work and I'm moving to gemzar. Bone only (7 years) until recently, now diffused liver Mets. One kid is a senior in HS, the other is in his fourth year of college (not yet a senior). I'm also freaking out. I'mgoing to PM you.

    Stefanie

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  • SchnauzerMom
    SchnauzerMom Member Posts: 374
    edited January 2019

    Jennifer,

    Thinking of you, and hoping that Gemzar works well. Fingers crossed that you get some better news. This has to be so rough. Sending you a hug and holding you up to the light.


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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited January 2019

    Hi. The liver is pretty forgiving. I had widespread liver mets with many lesions plus star scattered pattern in both lobes, along with a 5 cm benign hemangioma. I believe they give you just enough chemo, based on your tumor load and weight so not to shut down your liver from tx.

    This could be the tx that will last for years. It just breaks my heart to hear your frightened voice. Keep focused if you can, write down your plan, get that second opinion. It all takes energy and that has to be hard when you are already worn out. Don't let anyone say it is over..you will know in your heart when it is time. But it is not now.

    You can do this.


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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited January 2019

    Jen, assuming Gemzar does something..the follow up next might be Thera-Sphere, which is a Y-90 type of radiation, followed by maybe an edocrine therapy. If Gemzar doesn't work, he wants to try Abraxane, I think. You have been thru a lot of different chemos this year. Yes, that is scary. If you got a good result with taxol the first time, and it's been a few years, you could try that again.. or another taxane. He also said there was a new targeted therapy becoming FDA approved soon called Apselibib (sp?). that I may be able to try. Lots of what ifs. Good luck, my friend.

    Sunset



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  • JFL
    JFL Member Posts: 1,947
    edited January 2019

    Jennifer, my heart sank reading the heading of your post. I am also in the “heavily pretreated” category. Hard to know how many options are left. For what it is worth, I have had very extensive, diffuse liver mets from the get go in 2014. Worst point was 2016 when my liver was 70% mets, including pretty much the entire left lobe. The liver only needs 10% to function. My liver has regenerated a lot since it’s worst point. I had Y90 recently which seemed to slow things down. I had to leave Doxil for Halaven but have been accepted to NCI MATCH trial which tests many, many different genetic alterations. Other than having the alteration and a biopsy tested in the last 6 months (which can be older, leftover tissue), there are not really any requirements. I am doing an arm for FGFR amplifications. May be an option if you have anygenetic mutations/amplifications on a Foundation One, Caris or other genetic test.

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  • pajim
    pajim Member Posts: 2,785
    edited January 2019

    Jennifer, All I can offer is many hugs.

    It sounds from the responses above that your liver can work for you some more. Maybe you just need a dose reduction in the chemo.

    And a few more hugs. Feel free to sulk for a while.

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  • bigbhome
    bigbhome Member Posts: 840
    edited January 2019

    Jennifer, I am sending hugs and prayers your way! Crank that music up!

    Claudia

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited February 2019

    hey Jennifer! Just saw this and my heart sank. Any updates?

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2019

    I will update soon. So much has happened. Still alive though, and may actually stay that way for a bit.

    However, it's late, and I'm tired.

    Hope everyone is warm and happy.

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  • Jaylea
    Jaylea Member Posts: 478
    edited February 2019

    Jennifer, adding my name to the "son of a b!t@h" chorus. JFL and others have some great insights. In an earlier liver met scare my MO said I'd be going on a taxol/taxane. She also said, echoing others, that the liver has amazing regenerative powers. So give yourself time to grieve on this news, but know there are options. Hugs to you, honey.

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  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited February 2019

    Jennifer-sending love and support; holding you in the light. There will be something to simmer those damn liver mets down. Best, MJH

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited February 2019

    Jennifer, have you read about this trial?

    Seems you would fit the Part 1/2, substudy B, where standard of care options are not working..esp those liver mets. Please read Katty's story.

    I have bookmarked NCT 03661632 for myself for future monitoring.

    Edited for you to look at Feb 4, 2019 Kattysmith discussion..

    https://community.breastcancer.org/forum/8/topics/...

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited February 2019

    Jennifer I'm sorry to hear You are in this spot. I'm praying.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited February 2019

    There are some teaching hospitals/cancer specialists who are using heat-- hyperthermia-- for tricky tumors. UMD, Wash U St Louis, and Cleveland Clinic are three of them I found on line. It is not a commonplace treatment, but it can be very effective. There are many ways of using heat-- from little probes inserted near the tumor to convey heat, or an external source of heat like ultrasound, or heating a drug prior to administration, or heating your blood in one area of the body-- all depending on the tumors being treated.

    Something to ask about....

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2019

    Guys,

    Thank you so much for all this great information. I am pursuing the trial, while waiting to hear about a trial at MSK (the mesothelin one).

    Since I popped in here last, I have caught the real deal flu (type A), and have needed some medical intervention in the form of blood transfusions. Monday, I had a big, bad reaction to a platelet transfusion (my first one ever), so I don't know how that is going to affect treatment down the road. Am currently on Gemzar/Carboplatin, and that can be platelet suppressive.

    I am so tired of coughing. I see MO tomorrow, to find out what the heck is going on. Today, I'm doing a deep dive into platelet transfusion reactions.

    Gratefully,

    Jennifer

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  • Moissy
    Moissy Member Posts: 550
    edited February 2019

    Hope you recover from the flu and transfusion reaction soon and get into a trial. So much going on for you right now. Hope you get all the Info you need at your appointment tomorrow

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited February 2019

    BlaineJenner and all I am just popping in to make sure you guys are following the discussion of kattysmith's story on Opodivo and EP4 inhibitor, this drug combo is designed to make "cold" tumors hot, and may enable allof us to respond to immunotherapy- its exciting her progress thus far, and no killer side effects!

    https://community.breastcancer.org/forum/8/topics/...


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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2019

    I know! Isn't that brilliant.

    On the serology front: I made platelets all on my own. Not enough, but I did it. MO was pleased. Every liver value improved, except for bilirubin, which went to 2.1. MO believes that the allergic reaction could have contributed to that bit of news.

    So, for now, I continue on Gemzar/Carboplatin. It's usually 2 on/1 off. But for this cycle, it's going to be 2 on/2 off. If I truly need platelets, they are going to do the routine where they load me up with Benadryl, NSAIDs, and have a nurse watching me closely.

    I was so frightened that I was going to get the "talk". It is quite heartening to find out that MO is in there, fighting with me.

    BTW, even if you get vaccinated, the flu is no joke. It's the beginning of week three, and my lungs are still burbling on low simmer. I have to cough about once every minute or two, unless I'm deeply asleep. My spouse, normally a healthy person, is still trying to get better. I had no idea the flu was like this. Obviously, I've never had it before.

    Thanks everyone for your information and support. I have been so scared. I'm still not out of the woods, and remain "heavily pre-treated", but it looks like I'll get some time to finish my list.

    Jennifer

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited February 2019

    BlaineJennifer rooting for you and your lungs and platelets and bilirubin to return to a level of normalcy and that you are able to find comfort and rest as you heal from the flu. It is truly no joke! I am so happy to hear you reached a turning point and sending you good juju and positive vibes that this continues. Hugs hugs hhvs

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  • Southernsurvivor
    Southernsurvivor Member Posts: 632
    edited February 2019

    Jennifer, you are in my thoughts today and I’m hoping your flu symptoms and platelets are getting better. I can’t even imagine getting the flu while on chemo! Seriously, it’s always something, isn’t it? Hang in there - you have so many virtual supporters, like me. 💕

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2019

    Sorry you've succumbed to the flu, blainejennifer. That sucks but think of Coley's Toxins. This could jumpstart your immune system. Rooting for you and your MO!!

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited February 2019

    Love to hear your MO is fighting along with you, as are we. Hug

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  • Lovestosing
    Lovestosing Member Posts: 53
    edited February 2019

    Hi Jennifer


    Been thinking about you. How are you doing now? You have been so helpful to me and I’m sure so many others. I am willing all to go well for you. Sending you a big hug xxx

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2019

    LovestoSing,

    I caught Type A flu, even after having the jab. so chemotherapy has been slowed down. But, this old body is still fighting; made my own dang platelets after having a platelet infusion reaction. Not enough, but a substantial amount. Tweaks in my diet have helped with the anemia - that's the spouse's doing.

    They have made it their daily quest to get enough protein down my gullet, even when it is not my preferred food. Spouse also has a magnesium strategy for me. Remember, I gave spouse the flu and was unable to care for them. So, while being sicker than I had ever seen them, Partner took excellent care of me. They were amazing.

    Thanks to partner's oversight, my liver started behaving. All values are slowly going back to where they should be, even cheeky bilirubin.

    I am still in the situation of having a much reduced chemo quiver, but there is more wiggle room than there used to be. If anyone has crazy ideas, I am all ears. This Friday, I hope to use my MO time to talk about revisiting some old chemos, as I've been at this stage 4 stuff for about 7 years now.

    I am still waiting on the mesothelin test results to see if I am eligible for a trial at MSK. There's only one place that does the test (Mayo, of course), and I sent the samples about two weeks ago. If I make enough of the stuff, I have to hop more hoops, but it is a start.

    If not, I'm going to look at other trials. My previous sort had been immunotherapy, but I'll open it up to novel chemo combinations, etc. Time is time - no matter how you manage to grab it.

    I am so grateful for everyone's care and concern. We have no family here, and few friends. My bestie has MS - the unremitting kind - so I was used to being able to take care of them! This site has been a lifeline.

    Not yellow yet,

    Jennifer

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  • SchnauzerMom
    SchnauzerMom Member Posts: 374
    edited February 2019

    Jennifer,

    So glad to read your update! Sending good thoughts to you.

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