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How are people with liver mets doing?

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Comments

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited November 2019

    Was it something I said? Did I scare everyone away? Hello liver metsters!

    C. Diff test was negative! I got my first Doxil infusion today. (Pointing at liver tumors) Die, Suckers!

  • Frisky
    Frisky Member Posts: 1,686
    edited November 2019

    I think everyone was busy supporting this guy whose wife is dying...very sad situation on the fenbendazole thread....

    So...finally good news for you Shetland! No cdiff—which is a real bitch—and Doxil is on the rescue! May it be effective and easy on you...

    You might benefit from taking a supplement called Pancreas before your meals..it will basically ensure that the food you eat is properly assimilated.

    But it has to be from a good brand like from Allergy research, that comes from pork that's raised in New Zealand where they are not allowed to torture animals by feeding them garbage and keeping them alive with antibiotics and growth hormones...just a thought...an intuition....

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited November 2019

    Oh no! How sad. Damn.

    Hmm, I’ll check out that supplement. I have been eating organic kefir or yogurt daily for probiotics, as well as papaya and pineapple for digestive enzymes. Avoiding sugar. Generally BRAT-type diet. Symptoms are improving.

  • bbpie
    bbpie Member Posts: 28
    edited November 2019

    Hi ShetlandPony, hope you do well with your first infusion and minimal side effects. I’ve been following along on the Doxil thread too since that’s been a little more active.

    I’m curious as to how you will fare with this new treatment since we both had a stent placed recently in the bile duct. Please forgive me if I am incorrect by stating you do not have a stent in place now. I had my 3rd Doxil treatment on Nov. 5. CT scans after two infusions show stable liver and bones, but increase to abdominal lymph nodes. Four nodes specifically noted on my report showed 1/2 cm increase.

    No allergic reaction this time as my MO added Zyrtec as a premed along with Pepcid & an anti nausea pill. My does was also reduced by 10% because of terrible mouth sores for a couple weeks. Even had to drink water out of a straw! I had magic mouthwash and did baking soda/ salt water rinses multiple times per day.

    I’m having a tough time the past few days with flu like symptoms (fever, malaise, chills, body/bone aches, increased liver pai). Kinda reminds me of how I felt with my first Zometa infusion. I believe it’s the chemo as these are all listed side effects. JFL or Frisky mentioned on the Doxil thread that side effects are cumulative. Keep us posted as to how you are doing.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019

    Shetland.... "DIE SUCKERS!!!!" LOL I love that!!! YES DEATH TO ALL THOSE NASTY CANCER CELLS!!!!


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited November 2019

    I do that every time I start a new treatment, Nicole. It usually works. You are right to add the capital letters.

    Bbpie,, what does your onc say about those abdominal nodes increasing while the liver and bones are stable? Actually, I got the stent replaced as it was a temporary plastic one that lasts three months. I have that kind again now, only I have two. The biopsies in and around the bile duct were negative for cancer, but my onc does not trust that because ILC is so sneaky. Today my breast cancer tumor marker CA 27.29 is still low normal, which is odd because in the past it always correlated with scans and was reliable. But the CA 19.9 is somewhat elevated, and that is the one used for cancer in the area of the bile duct, and it can be used for breast cancer in that area. But it’s odd because of the negative bile duct biopsies and the positive liver biopsy. My CA 125 (ovarian, peritoneal) is normal. Yeah, I got the works today. CMP,CBC, Guardant 360 also.

    For mouth sores I recommended to someone else recently that they ask for an alcohol-free dexamethasone mouth rinse. It is now used with Afinitor, so why not other drugs? See the SWISH trial.

  • JFL
    JFL Member Posts: 1,373
    edited November 2019

    Shetland, glad to hear you were able to have treatment. Here is to Doxil killing the liver beasts! It is a bit surprising that the liver mets thread has gone somewhat quiet. I recall a time when I couldn't keep up hour to hour as the pace was so fast on this thread.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited November 2019

    ShetlandPony -

    I am here...just hanging in...had very rough weekend and did not want to whine about it here. Starting to question how long I can keep going. This is so much harder than people outside MBC can possibly imagine and will only get worse until the end. Talked to my sister to help me claw my way out of the black hole...

    Saw Dr Angel then had chemo today.

    Attempting to not ruminate over what Dr Angel said...scans next week then review reports and treatment plan following week...lots of options for treatment going forward...new clinical trial she is excited about...just opened from TNBC only to hormone positive...

    Why is she bringing up change in tx now? Clinical trial now? Why? Does she think there is progression and not telling me? Cancer antigen has gone up 2 months in a row. They will draw it again in 2 wks....

    I think she is talking about IMMU-32. It uses antibodies.

    Gumdoctor

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited November 2019

    ShetlandPony -

    I am so grateful to hear you have a new plan. As you know, waiting and worrying in between plans is so very hard to handle, at least for most of us.

    I think about daily.

    Sending you positive thoughts and prayers,

    Gumdoctor

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited November 2019

    gum doctor- I am thinking of you and sending virtual hugs.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited November 2019

    Left Foot Forward -

    Thank you so much. You are very kind and thoughtful.

    Gumdoctor

  • candy-678
    candy-678 Member Posts: 4,182
    edited November 2019

    Hi all.

    Prayers for Shetland and GumDoctor.

    I am waiting for my PET results (did PET Saturday the 9th).

  • Jaylea
    Jaylea Member Posts: 440
    edited November 2019

    bbpie, sorry you're feeling punk. I hope you feel better today. I'm following the Doxil conversations closely as MO mentioned it as a possible next line after Halaven.

    Shetland, huzzah for no cdiff and on to treatment! May this good news be the start of much more to come.

    Gumdoctor, you are right, this is so much harder than folks realize. And then it gets harder still. But between those rough times are plateaus and moments, days, weeks of calm. I'm glad your sister gave you one of them.

    Sending hugs to Leftfoot, and prayers to Candy for good PET results.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019

    Cross posting for you all...prayers welcomed :)


    I wanted to let you all know...I am scheduled for surgery this upcoming Monday...getting ovaries out...so I will not be starting Xeloda until after that. Can you believe the Oncologist/Gyneocologist that I consulted with at GWU today actually wanted to do it Thursday...I looked at my husband and we both were like NOPE!!! The Marine Corps Ball is Thursday!!!! LOL My poor husband needs to celebrate his Birthday for sure this year and I wouldn't miss it with him for anything! :) So Monday is the day for the surgery.

  • Kattysmith
    Kattysmith Member Posts: 688
    edited November 2019

    Nicole, enjoy every minute at the Marine Corps Ball and celebrating your hubby's birthday!!!

  • candy-678
    candy-678 Member Posts: 4,182
    edited November 2019

    Nicole- Prayers for surgery Monday. Laparoscopic? How long hospital stay? Recoup time? I still have my ovaries--on Lupron monthly injection. Wondered about surgery sometime so I don't have to do shots. Never spoke to doc about it.

    Update: Well my MO called me this afternoon. She said PET showed no uptake in liver or bones. To continue Ibrance/Letrozole. Appointment already with her Nov 25 and she said she would see me then. Processing and seeing what questions I have for her for the 25th.

  • anotherone
    anotherone Member Posts: 555
    edited November 2019

    candy , but this is awesome!!!why are you not jumping up and down elated ? No activity=no active cancer !!!!!! ( of course with caveats about test sensitivity yada yada but that applies to any test and any person ! )

  • candy-678
    candy-678 Member Posts: 4,182
    edited November 2019

    Anotherone- I know. I am weird. I am thankful. I thanked God after I hung up phone. But... Maybe I don't trust the scans. The last CT in Oct showed slight increase in size of liver met, and the TM's rose over several months. I just don't want to let my guard down. And also, I hate to admit this, I think if I have no active cancer, then people will think I am cured. Why then am I not working? Why can I not do things like I used to? Will my MO want to scan less? Will she (MO) let her guard down too and things get worse later and we miss seeing it?

    It is like, I cannot be too confident.

    And I FEEL so cruddy- fatigue, nauseous at times. I don't FEEL cancer free. I don't FEEL like I did before the cancer diagnosis.

  • anotherone
    anotherone Member Posts: 555
    edited November 2019

    I think I see what you mean, Candy. When did you have your last set of TMs? Would not it be great if you felt steadily better , may be slowly but moving in the right direction !

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019

    Congrats Candy.

    Thanks Katty...yes I am hoping I will be alive to go to everyone till he retires :)

    I should have mentioned ...you all knew by "his birthday" I meant the "Marine Corps Birthday" right? It was actually yesterday :) All Marines say Happy Birthday to each other on the actual Marine Corps Birthday and at the ball :)

  • candy-678
    candy-678 Member Posts: 4,182
    edited November 2019

    Last TM's a month ago. Had another set drawn today. Results in 3-4 days.

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2019

    Public Service Announcement/Cross posted:

    Does everyone know about the webinair tomorrow night sponsored by Living Beyond Breast Cancer? It's at 6 p.m. EST -- if you go to their website you can still sign up. It's about metastatic cancer treatment choices and side effects, and there is some kind of a participatory Q & A session.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited November 2019

    Gumdoctor, my friend, it’s not whining to come here and share! This is a difficult road we travel. I think it is good that your onc is thinking ahead so whenever you do need a treatment change, she is ready with good ideas, even if she does not expect it to happen soon. I think like that, always looking ahead at possible scenarios. I depend on the here-and-now people in my life to contribute their gift.

    Jaylea, you really are quite eloquent. I see wisdom in your comment, “But between those rough times are plateaus and moments, days, weeks of calm.” It reminds me to notice and appreciate them.

    Candy, yes, one of the lousy things about this lousy disease is that even when our current test results are great, we still feel the effects of the drugs we have to take. Fatigue has been my constant companion, even during my times of NEAD. Your onc knows things can change and will not ignore you. Talk to her about the plan going forward and get some reassurance. As for what other people may think, well, few or none without a similar experience will understand. So try not to worry about them. You’re not cheating!

    Nicole, good to see you have your priorities. Surgery can wait until after the ball!

    Special hugs to leftfoot, JFL, Jaylea and all the others here who surely are dealing with difficult things though they may not say so at the moment.

  • Kattysmith
    Kattysmith Member Posts: 688
    edited November 2019

    Hi Nicole, no I didn't know that about the Happy Birthday tradition. If you're comfortable doing so, please post a photo of you and your hubby in your fancy Ball duds! I'd love to see your dress!

    Katty

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited November 2019

    Not a fancy ball gown...

    But out doing errands with husband in the cold...Wearing the brand new cap I just fi

    image

    nished knitting. Had to learn circular knitting and re-learn regular knitting...

    Of course the cute hair is my friend, my wig...

    Gumdoctor

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited November 2019

    Hello Gumdoctor! Nice pic in your new cap. 😊 I don’t love the cold weather but it’s here

  • Kattysmith
    Kattysmith Member Posts: 688
    edited November 2019

    Gumdoctor, love that cap! I'm impressed. And the hair looks warm, too!

  • anotherone
    anotherone Member Posts: 555
    edited November 2019

    Hi gumdoctor. Nice to put face to a name. I am reading your posts sitting quietly in the virtual corner of this thread as I do not have liver Mets (or they were not found yet) scared lots of what you and other ladies from here go through.

    Candy , how weird - TMs consistently up , and recent ones . Hoq were you previous PETs ?

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019

    Gum...GREAT PIC!!!

    Katty I will post a pic..I will have my foobs in for the ball gown..lol well..my knitted knockers.. usually I just go flat now I actually forget I don't have boobs lol...but the knitted knockers are sooo soft and for the dress I want a little boob...lol

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019

    Just an update... I will start the Xeloda now on the 25th...500 mg in the morning and 500 in the evening for 1 week (since I will be post op) then I will go to 1000mg 2 times a day...and my MO agreed to my request of 1 week on 1 week off :)

    Side note please pray I have an MRI Saturday of left femur been having pain in the back side of that... also have CT full scans for base like in 2 weeks.

    I will cross post.

    Thanks ladies :)

    Nicole

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