How are people with liver mets doing?

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Comments

  • Frisky
    Frisky Member Posts: 1,686
    edited April 2018

    Congratulations Babs! I'm so very happy for you...May you continue to greatly benefit from all your TX.

    Good news lifts all our spirits greatly!

  • Frisky
    Frisky Member Posts: 1,686
    edited April 2018

    Congratulations Babs, TM going down a lot is wonderful news! May you continue to greatly benefit from all the care you're receiving....

  • lalady1
    lalady1 Member Posts: 530
    edited April 2018

    Miao - I was listening to Neil Young "On the way Home" last night, but love classical in the morning - thanks for the Kiri link. Lisa - hope you get results from MRI re: jaw met soon. You will need rads if one is present and need a top RO to administer. My liver mets are uptake on both sides microsized - not in the league of Y90 or TACE. But I asked anyway. UCLA offers a lot of specialists, not sure which choice the RO will prefer when/if that day comes. Xeloda for liver is killer good - join the All about xeloda thread for more details from ladies on this med for years. :) Z- you are on the right path now. Glad it's low does A-train with the cold caps to save your hair. It helped to imagine I was skiing for 4 hours for my cold head. :) After the first cap your head actually gets rather numb. Get ready for Monday. :)

    (()) C

  • lisajo6
    lisajo6 Member Posts: 155
    edited April 2018

    my MRI was clear. Still a mystery why my lip and chin are numb

  • Liwi
    Liwi Member Posts: 249
    edited April 2018

    Lisajo - Could the lip and chin numbness be a neuorpathy side effect of taxol? It is more typical to impact hands and feet but I think it could impact other areas of body.

    Glad to hear about clear MRI

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited April 2018

    Hello Liver Metsers! I thought some good news could bring all of us some cheer and hope. It has been a very tough month for my BCO stage IV friends.

    My CT and bone scans today, April 6, showed no evidence of active disease in liver, bone and lung. I am still on first line Letrozole/Ibrance 100, cycle 18. I also give credit to that emergency chemo AC back in Oct 2016.

    Wine and chocolate tonight.

  • cure-ious
    cure-ious Member Posts: 2,869
    edited April 2018

    Congratulations Sandi!!

    The longer you go, the clearer it is that the meds are working well against your cancer, and so can keep working for a long time...


  • AnimalCrackers
    AnimalCrackers Member Posts: 542
    edited April 2018

    Yay Sandibeach5 - I'll be lifting a glass of wine and eating some Hershey kisses in your name tonight!!! We do need good news.

  • babs6287
    babs6287 Member Posts: 1,619
    edited April 2018

    Had my second y 90 today. All went well I feel good but tired. The IR was very happy! We’ll see once my scans are done at the end of May. Fingers crossed!

    Babs

  • Liwi
    Liwi Member Posts: 249
    edited April 2018

    Wonderful news Sandibeach. Enjoy that wine and chocolate!

    Babs - happy to hear your 2nd Y90 went well

  • Frisky
    Frisky Member Posts: 1,686
    edited April 2018

    congratulations Sandy, great news! Enjoy your treats! I wish I has some wine to drink right now myself

    May you continue to remain healthy...

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited April 2018

    SandiBeach, WOOHOO for those scan results. NEAD is just what I like to hear.

    Babs, I hope you are feeling well. I look forward to hearing about your scan results next month.

    Hugs and prayers from, Lynne


  • zarovka
    zarovka Member Posts: 2,959
    edited April 2018

    Woohoo SandiBeach

    Yay Babs!

    >Z<

  • Frisky
    Frisky Member Posts: 1,686
    edited April 2018

    Signs of intelligence...enjoy

    Reclassify cancers to improve treatment, researchers say

    BBC News US

    Cancers should be classed by similarities in tumour types, not by where they are formed, a study says. Read the full story

    Z- thinking about you and sending you waves of strength and calm as you prepare for Monday morning.

    May you experience only smooth sailing...hugs....Miao

    Sent from iPad

  • BabyRuth
    BabyRuth Member Posts: 107
    edited April 2018

    Lisajo-My MO recommended the Y90 for me and set up my appointment with the IR. It was the right decision for me as I am almost 2 and 1/2 years stable. I would recommend going to an IR on your own and discussing the options they think are right for you. The Y90 is not for everyone but the IR should be able to give you options to consider.

    Sandi-Great news! We are all celebrating with you!

  • zarovka
    zarovka Member Posts: 2,959
    edited April 2018

    BabyRuth, Babs - I wish I had access MOs of the quality that you have.

    Miaomix - Interesting article. Here is the full research paper in Cell.

    There is a related paper that looks at gynecological cancers

    Highlights

    • Integrated analysis finds molecular features characteristic of gynecologic tumors
    • Subtypes with high leukocyte infiltration, a marker for immune response, identified
    • Gene-lncRNA interaction network of ESR1, DKC1, and lncRNAs TERC, NEAT1, and TUG1 identified
    • Decision tree to group patients into clinically relevant prognostic subtypes proposed
    >Z<
  • Grannax2
    Grannax2 Member Posts: 2,387
    edited April 2018

    Z What does that mean as far as better TX for us? Specifically, Gene RNA interaction network for ESR1 and the other mutations you mentioned. Of all of those i only have ESR1. I'm guessing if they group us differently they can hope to find more specific TX?

  • zarovka
    zarovka Member Posts: 2,959
    edited April 2018

    I am fasting and my mental faculties are not fully intact, but I thought about you as I read that paper while sipping ginger tea. ESR1 mutations put you in the C1 and C2 groups.

    Cluster C1 was highly enriched with OV samples (and basal BRCA and UCEC to a lesser extent) and contributed strongly to S10, a signature associated with germline and somatic BRCA1 and BRCA2 mutations that correlate with responsiveness to PARP inhibitors and platinum-based therapy (Konecny and Kristeleit, 2016).

    C1 also had samples with frequent TP53 mutations and homozygous deletions, supporting the association with an ineffective DNA double-strand break repair COSMIC signature.

    C1 is associated with a good response on hormone therapy.

    C2 included hypermutators and ultramutators, which have been associated with relatively good survival on conventional therapy.

    It's really hard to interpret because the treatment strategy for C1 and C2 are very different and, based on your ESR1 data alone, I can't say which group you would fall in.

    It would take a researcher familiar with this model to really make use of the information. It's always fun to contact the author that seems most accessible and has the most relevant expertise. Provide a brief overview of relevant diagnostic information. Sometimes they answer.

    My mind is in a bit of a fog and it is one complicated paper.

    >Z<

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited April 2018

    Thanks, Z. I'll try to tackle that article in the morning, when my brain is a little sharper than it is right now. Ha. Now it's your turn to get all the attention as you prepare for tomorrow. Hoping all goes well for you.💞

  • zarovka
    zarovka Member Posts: 2,959
    edited April 2018

    Abraxane tomorrow. I've been fasting since Friday. I'll be at 60 hours when I get my infusion and then I'll fast for another 24.

    I've been getting very into Dr. Valter Longo of USC. This is a video on fasting depended differential stress resistance and sensitization in cancer. Longo's team has decades of research that shows that fasting protects normal cells and sensitizes cancer to chemo. Normal cells detect the lack of resources and stop growing, cancer cells panic and try to grow faster. And, of course, it's that growth that taxols target and shut down. Cancer cells have evolved to grow rapidly and not die but the problem is that they cannot shut down. They die when they cannot grow. The effect is to increase the impact of the chemo on the cancer and limit the effects on normal cells. Fasting in fact benefits to the normal cells, which evolved in an environment where fasting was a Thing. Almost like they need it periodically.


    The risk is losing too much weight and I will have to watch that, but I feel I have a special talent for gaining weight. We'll see but I think I got that covered.

    My liver is so big it's uncomfortable. Hopefully it is pushing my stomach out, because otherwise I have ascetites?!!? It has gotten less painful since I started fasting. Nonetheless, I can see the liver bulging out under my rib cage a little more each day. Abraxane should be the magic bullet for this beast. lt will go to town on this fast growing cancer. Dividing cells is what is designed to kill.

    Off to figure out cool caps. DD taking the morning off from school get me through the IV and cold caps. Hiked over an hour. Yoga planned in a bit.

    Thanks to your support I am functional and the panic attack is receding. The transition to chemotherapy has been tough on all levels.

    >Z<

  • babs6287
    babs6287 Member Posts: 1,619
    edited April 2018

    Z as always you amaze me. Your research into fasting makes me wonder if I should try fasting too. You always know so much! Good luck on abraxane. I hope it knicks the dickens out of your liver mets!

    Babs

  • Lillymillie
    Lillymillie Member Posts: 115
    edited April 2018

    The thread has moved on so quickly. I was looking for Miaomix's post on caster oil packs. I have never heard if them bit intetested in their benefits.

    Finally Z I feel in position to offer advice (I never feel I have much to add as I'm constantly on the back foot trying to learn here). I did Abraxane in from Sept - Dec 16. In UK we do 6-8 sessions and stop. We can revisit it if it doesn't fail. I found it a relatively easy chemo. I did lose my hair but did feel good. A little tired for a couple of days after but generally life was normal, a bit of tingling in hands and feet by the end. It did knock my mets right back so best of luck! I'm interested in this fasting.

    Katty I love your quote I'm not sure if I'm just Zen or shellshocked😂 I feel like this.

    Babs good going. Keep us up dates on y90 and may it be a great success.

    Lalady Great news about nead. We all need to hear this .

    For my diffuse mets which have worsen with latest biopsy I have started on xeloda 4300g a day. Feel great but we will see. Very easy so far.

  • cure-ious
    cure-ious Member Posts: 2,869
    edited April 2018

    Z- Awesome!! How do you feel fasting for so long?!! It must help somewhat to understand the biology of how you are altering your own metabolism to make the chemo as effective as possible. The potential for fasting to alter the response of the body to drugs is huge, huge. I remember reading a paper that said if you give metformin to a fasted (nutrient-depleted) cell, it is 1000x more effective than a cell happily growing in high glucose. That makes sense, its easier to reduce sugar if sugar is low, but 1000x?! Similarly, there was a study that showed that fasting every evening from 6:30pm (water only) till 8am the next morning is good for a 1.5 point reduction in A1C levels for diabetics, which is something they can't even get out of most drugs! The point for that kind of nighttime fast is to get the sugar out of your system, then after an hour or so you are burning fat. So eat any thing you want in the day, but give yourself a long fast to burn it off. The body also really likes regular schedules, so the longer you do this kind of 'fast', the quicker the body adapts to the idea of the fast and responds- your circadian rhythms tighten way up. I have a friend who fasts for fun when he is traveling, he just wants to see how the fast protects him from jet lag etc. Fast a day or so before hand, just nibble on the plane, then eat a big breakfast and have coffee and sit outside in the sunshine on the mornings wherever you have landed, he swears by that..

    In your case, you are weakening the cancer cells and waking them up and them out of their sleepy rhythms, right when low-dose chemo is about to hit them, and I'd be you'll get the effectiveness of a much higher dose of chemo, and perhaps much more widespread. We shall see, but I am also very interested to hear whether you think you can bounce back quicker from the effects of the chemo, because your normal cells were more resistant to it. You are protecting your body with the fast, and sensitizing the cancer cells to be killed by the chemo. Afterwards, you can slowly start eating/drinking and clearing out the chemo drug, you may have some nausea anyway, so I'm guessing that part won't be so hard. Good luck tomorrow!!

  • cure-ious
    cure-ious Member Posts: 2,869
    edited April 2018

    Z- Awesome!! How do you feel fasting for so long?!! It must help somewhat to understand the biology of how you are altering your own metabolism to make the chemo as effective as possible. The potential for fasting to alter the response of the body to drugs is huge, huge. I remember reading a paper that said if you give metformin to a fasted (nutrient-depleted) cell, it is 1000x more effective than a cell happily growing in high glucose. That makes sense, its easier to reduce sugar if sugar is low, but 1000x?! Similarly, there was a study that showed that fasting every evening from 6:30pm (water only) till 8am the next morning is good for a 1.5 point reduction in A1C levels for diabetics, which is something they can't even get out of most drugs! The point for that kind of nighttime fast is to get the sugar out of your system, then after an hour or so you are burning fat. So eat any thing you want in the day, but give yourself a long fast to burn it off. The body also really likes regular schedules, so the longer you do this kind of 'fast', the quicker the body adapts to the idea of the fast and responds- your circadian rhythms tighten way up. I have a friend who fasts for fun when he is traveling, he just wants to see how the fast protects him from jet lag etc. Fast a day or so before hand, just nibble on the plane, then eat a big breakfast and have coffee and sit outside in the sunshine on the mornings wherever you have landed, he swears by that..

    In your case, you are weakening the cancer cells and waking them up and them out of their sleepy rhythms, right when low-dose chemo is about to hit them, and I'd be you'll get the effectiveness of a much higher dose of chemo, and perhaps much more widespread. We shall see, but I am also very interested to hear whether you think you can bounce back quicker from the effects of the chemo, because your normal cells were more resistant to it. You are protecting your body with the fast, and sensitizing the cancer cells to be killed by the chemo. Afterwards, you can slowly start eating/drinking and clearing out the chemo drug, you may have some nausea anyway, so I'm guessing that part won't be so hard. Good luck tomorrow!!

  • Liwi
    Liwi Member Posts: 249
    edited April 2018
    The reasoning behind the fasting is very interesting. My neoadjuvant chemo (AC followed by Taxol) during my initial BC treatment did not work, likely at least partly because my lobular cancer was too slow growing. I wonder if the fasting effect would be enough to make a difference if I have to go to a chemo treatment in the future.
  • zarovka
    zarovka Member Posts: 2,959
    edited April 2018

    Cure-ious - The video of Dr Longo that I link to above is really worth watching. He walks through key studies demonstrating that fasting is protective of normal cells and therefore reduces side effects. Of course, with mice, the "side effect" they are measuring is death. In one study of doxil, the fasting mice were happy and active and the control mice all died in 8 days. "We don't usually see this", he said.

    The other question is whether fasting sensitizes cancer to the chemo, which is the key. Mice who fast before chemo live a lot longer and some go into remission. Very different outcome from mice who do not fast.

    He also discusses a study that shows that chemo plus fasting results in lymphocytes infiltrating tumors that are otherwise not immunogenic. That, of course, is the holy grail.

    The clinical trials on humans so far are small but demonstrate a reduction in side effects, safety and no obvious reduction in the efficacy of the drugs. No clinical trials yet with results on outcomes, but there are several active trials.

    And if you had any questions about whether or not to decline dexamethasone, check out minute 12.

    Liwi - worth a shot.

    >Z<

  • daywalker
    daywalker Member Posts: 77
    edited April 2018

    Wow Z very interesting info regarding fasting... All the best with your chemo, it must feel better to have a plan in place? I am also wondering whether fasting can have benefits even for targeted therapies like Herceptin...

  • PHOTOGIRL-62
    PHOTOGIRL-62 Member Posts: 274
    edited April 2018

    Hello Everyone,

    Seem like I've missed a lot. Was in Africa for a few weeks then as soon as I got back had to go to Dana Farber then the next week back to Dana Farber. Before I left for Africa I had a Pet Scan, CT, MRI and all showed active liver mets and bone mets. I think Xeloda has stopped working and my MO in Boston wanted to see me ASAP. Then mysecond visit was liver biopsies and now I'm waiting patiently to find out what they will do next.

    On my old pathology they found a strange mutation in my protein and enzymes that enter cells and make the cancer grow. I can't remember what it's called. If I find out I'll let you know.

    Z, I'm glad your feeling better.

    Babs, TMs are always good when they are going down. I loved the pictures of your family.

    Lalady, glad your done with that nasty radiation. That really does a number you.

    For everyone else keep going, that's all we can do. Thinking of everyone!

    Hugs,

    Anita

  • Frisky
    Frisky Member Posts: 1,686
    edited April 2018

    Z—what's going on? How you're feeling? Inquiring, anxious, and caring minds wanna know....

  • KC1010
    KC1010 Member Posts: 69
    edited April 2018

    hello, all - just finished a consultation with Dr Lewandowski at NW. While I am a candidate for Y90, BCBS will most likely deny me, and the appeal process can take 4-6 weeks. I guess 4 of the 5 last BC patients they had, lost even their appeals. I haven’t heard about Opdivo yet...my MO is hoping for an answer any day. Meanwhile, I’m a little down today, knowing that I’m running out of options.

    Babs - congrats on your 2nd treatment. Z- wishing you the best that fasting/Abraxane does the trick in knocking out your liver mets.

    Everyone else - great thoughts coming your way that we all find a treatment that gives us a nice long run.