How are people with liver mets doing?

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

    uplifting news from Israel....may we all live long enough to see that day....immediate cure with no side effects....

    A team of Israeli scientists claim they will likely develop a cure for cancer in the next year, The Jerusalem Post reported on Monday.

    The new treatment is being developed by Accelerated Evolution Biotechnologies under the leadership of CEO Dr. Ilan Morad, according to the report.

    "We believe we will offer in a year's time a complete cure for cancer," said Dan Aridor, chairman of the company's board. "Our cancer cure will be effective from day one, will last a duration of a few weeks and will have no or minimal side-effects at a much lower cost than most other treatments on the market."

    The treatment, called MuTaTo, will use a combination of cancer-targeting peptides and a toxin that will specifically kill cancer cells.

  • hartrish
    hartrish Member Posts: 290
    edited January 2019

    Here is an interesting article from Dr Moran in Israel who says he thinks they have found a cure for cancer. Only in mice models now but says in a year they should be finished with their work. I am Not sure what that means for human trials/treatment though.

    Would be a blessing if turns out true. I keep thinking someone will have a cure one day

    https://m.jpost.com/HEALTH-SCIENCE/A-cure-for-canc...

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited January 2019

    if your liver turns out to be cancer, there are many types of TX available to you. You might be a candidate for local treatments such as excising the one tumor or radioembolization. As to targeted TX there are several. First things first, get a BX and test results.

  • cure-ious
    cure-ious Member Posts: 2,869
    edited January 2019

    Woodylib, It is great to "see" you again!! I remember following you and SandiBeach so closely, because both like me were PR-negative, but now I realize that your cancer 'converted' over to being HER2-positive after a couple of years- lucky break!!! And to be still nothing in the liver after six years?! awesome! They say Her-2 positive cancers will be cured first..

    I am also concerned about Z- I have not heard from her since the fall. I hope and expect she remains doing well, but like everybody I really hope she buzzes back in, because she was such a wind of energy uplifting everybody on the boards..

  • rowwellandlive
    rowwellandlive Member Posts: 12
    edited January 2019

    Grannax I'm up all night I'm so scared. Beating myself up for being almost 2 months late for my mammogram in case it's breast mets. If it's primary liver cancer i don't know if that's more scary or not. Such a wreck. Thanks for your kindness and hope.

  • bsandra
    bsandra Member Posts: 1,027
    edited January 2019

    Clinical trials with peptide-based drugs are a long time on the way around the world, and these drugs are effective. If those are cures is yet to be seen. Animal models bring cures with many new drugs (even chemotherapies) - humans are another problem. Marker Therapeutics are working on TPIV200 and TPIV110 vaccines for ovarian and breast cancers, there are several other European, American and Asian companies that work with peptide epitopes. What Israeli scientists could really do different is advance faster, as EMA and FDA processes are damn too long. If a drug works, why to wait 5 years and ,,see what happens". I understand, dosages, side effects and other things are important and can dramatically change outcomes but if something works in animals 100 %, it should be tried on humans a.s.a.p. without years of preparations, waiting for grants, funding and blah blah. Many extremely promising drugs don't make years into clinical trials. And then phase1, phase2, etc... This has to be changed and I believe that brave and responsible countries can fast-track drugs in a year or even less because we are dying and we need them today, not in 10 years!

  • skitzblitz
    skitzblitz Member Posts: 153
    edited January 2019

    jfl- could you give me some more info on halaven? Side effects how it is given, etc. I'm doing round 6 of ac chemo next Monday. My markers keep dropping and my scan shows the tumors seem to be necrotic, dying off. To me it sounds like my doctor might keep on with ac past the six rounds he originally stated, ugghh! I really am thankful I'm not having to hard of a time with it just mouth sores and blood transfusions every three weeks.

    I was looking into y90 after this bit seems with all the new mets still popping up afterwards with you and grannax I'm now Leary. I do feel I have agressive liver mets and still need to nip them in the butt after ac.


    Thanks for any info

    Sarah

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited January 2019

    Cure ious. My tumor was 100% ER + this time. I don't have my copy yet but that must mean it's PR-, it's still HER2-. I didn't know that meant anything. Interesting

    Rowwellandlive. Sorry for your bad night, I had a bad one last night too. So, you have not had any tests for breast yet, not even a mammogram? Did your doc order a BX of liver? Maybe I don't remember but who brought up the possibility of breast met being a possibility. One of your docs? Depending on where it it located in the liver, I'd vote for liver cancer primary. If it's a met with no known origin that's hard. BC Mets treatable. It's a toss up right now. They need to get the liver BX soon. You won't know a thing until the pathology comes back. No wonder you're scared.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited January 2019

    skitzbitz. I don't think my y90 failed. Like jfl said the I R can only zap the places he can see. So, mine that are growing right now are probably ones he could see in my initial y90. I will have it again when and if he says I'm a candidate. So, go for it. Give that aggressive tumor some zap and pow!

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

    Skitz, Halaven is administered weekly on a schedule of 2 weeks on, 1 week off. It is an injection given slowly over 2-5 minutes. I have had 4 doses and it is very manageable right now. Hair loss is a risk although from what I understand, people don’t usually lose all their hair. Some lose none, some lose nearly all and others fall in between. I am using cold caps which is a major time suck but has preserved my hair completely. The only side effect I have noticed is a bit of neuropathy. However, I never recovered fully from Abraxane neuropathy and had a fair amount to begin with. Have you taken Xeloda? If not, that could be a good option for maintenance once you finish AC. No hair loss andtaken in pill form. Highly effective on liver mets.

  • rowwellandlive
    rowwellandlive Member Posts: 12
    edited January 2019

    I had a three phase liver CT this morning and I'm on pins and needles. No one brought up breast mets I came up with that myself. Doc has not ordered a BX I guess that's next. Waiting on results.

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

    I couldn't agree with you more BSandra on the current dysfunctional system and state of affairs....

    thank you for your insights on these potentially game changing new drugs.

    Row...I wish you the best results from the tests your undergoing.

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019

    RowWellandLive,

    My original diagnosis was stage 0 carcinoma in situ on my right breast at the age of 35, confirmed by mamo, a surgical biopsy, and a pre op MRI.

    However I decided to do a double mastectomy and my surgeon told me that while she was not going to push me toward the mastectomy, this is the right decision. During my mastectomy the 3 sentinel lymph nodes were clear so she didn't go further than that.after a week my pathology came and showed I had a 2.2 cm tumor laying deeply under my muscle and all the machines failed to catch it. Surprise! I was stage 2 and if I wouldn't do the mastectomy God knows what would happen.( it's all over the internet that its aggressive treatment and women should go with lumpectomy in early stages).

    I just think there is not such a thing as stage 0 and when the cancer comes it shouldn't be taken lightly.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2019

    Hi Woodlyb. My liver mets are stable..my MO said they appear dead-ish..ha. No progression and nothing new growing. Without a PET scan, I cannot say 100% dead. My MO does not order PET scans for me as she says it can raise more questions than answers. I am fine with her assessment.

    What we ARE doing is some form of scan every 3 months,ie, liver MRI, then 3 months later bone/ CT contrast scans. So basically a liver MRI every 6 months and bone/CT scans every 6 months.

    Then monthly labs, plus Ca15.3.

    As of Jan 22, I am still considered NEAD, no evidence of ACTIVE disease. (Because we all know that microscopic mets are just hiding and waiting).

    I am trying to live normally, but it can be hard knowing my mortality is defined. Right now, planning for a family gathering to watch the Superbowl which helps me to forget..


  • skitzblitz
    skitzblitz Member Posts: 153
    edited January 2019

    thanks jfl, I did do Xeloda and it didn't work. I so wish it would have bc I didn't have to hard of a time in it.

    I have only a fuzz on my head bc of the ac chemo. I miss hair. I feel like i look like my grandpa without any, ughghh! I think the ac has aged me some. I think you said weight gain as well, awhile back, I could use some of that.

    I guess as my mom always said “we shall see what we shall see" as far as next treatment. Guess I better worry about being ok on this one before jumping the gun.

    We are freezing in Iowa! It is supposed to be -54 with the windchill tonight. It is just not right.

    Thanks Granax, I guess I was thinking y90 wasn't specific to each mets I had already. I was thinking the beads were like chemo and blasted all that was in the liver already. Makes sense.


    Thanks

    Sara

  • skitzblitz
    skitzblitz Member Posts: 153
    edited January 2019

    scwilly - hope all is well, checking in on how you are doing

  • rowwellandlive
    rowwellandlive Member Posts: 12
    edited January 2019

    Ailurophile thank goodness you followed your own instincts. I am angry at all the disinformation about DCIS we've been fed. When I thought I might have it I don't think I would have ever even considered anything more then a lumpectomy. They made it sound like no big deal, This is infuriating! I'm happy I came to this site so now I have the facts.

    SandiBeach, Grannax, Miaomix, and all that were there in my time of need thank you. Turns out I have a benign liver tumor called a Focal Nodular Hyperplasia. The second most common benign liver mass after hemangioma.

    The plus side of this anxiety ridden experience is I learned so much about breast cancer, stage 4 in particular. Most women don't have a clue. I will be silently following all my liver mets "friends" and wishing you all the best. What a terrific, supportive group.

    Here's to those Israeli scientists! May it please be true.

  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited January 2019

    RowWellandLive, good for you. I've been reading along. Be well, and I pray you never have to be here by necessity, but glad to have your viewpoints. God bless.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited January 2019

    PTL Rowwellandlive What a big relief, thank goodness. Yes, and you did learn a lot, knowledge will always be useful in the near or far future.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2019

    RowWellandLive, hoping you are going to have nice, long sleep tonight. Even thou you were just passing through, just wanted to give you a "keep strong" hug and now go have some fun! Remember..don't put off doing the things you love.

  • Kattysmith
    Kattysmith Member Posts: 688
    edited January 2019

    Rowwellandlive, what wonderful news!!! So happy for you and what a huge relief for you and your family. BIG HUG FROM TEXAS!

  • FelineMum
    FelineMum Member Posts: 42
    edited January 2019

    Ever feel like a complete idiot? I do right now.

    I know so little about my liver mets. They're my only mets and that's good, right? Yet when all three of the tumors (at the time) were discovered in April 2018, I was given 6 months or less to live. The only treatment option mentioned was Halaven. My then-MO said it had traditional IV chemo side effects and might give me 3 to 4 more months to live. But with a decrease in QOL I might find unacceptable. I did.

    My mets were discovered 2/3rds of the way through rads, so I never finished treatment. My RO suspected a local recurrence which a CT scan confirmed. I had my first round of cancer-oriented comprehensive scans since April 2018 last week. The April 2018 CT scan found no liver mets. A PET scan did. After the CT scan, a task force including a surgeon were rounded up in hopes of a good PET that would've been followed by node removal for the recurrence. No such luck.

    But my CT scans report from last week (chest, abdomen, pelvis) keeps referring the April 2018 scan like it found liver mets and making comparisons. The report says there are numerous new lesions on the liver, especially in the dome area. Is a lesion the same as a tumor? How on earth don't I know that?

    I thought the results were pretty good. I went 10 months without chemo and 6 months without any treatment, so I didn't expect miracles. My bone scan was 100 percent negative for mets. But my MO seems to think the increase in lesions means the Doxil I'm on isn't working anymore. I've only had four infusions and I feel so much better! I do have my days but it's mainly mood, and the scans found a severely enlarged thyroid and goiter. With a family history of thyroid disease, I know it can affect moods and energy levels. The MO thinks tm are the bible of chemo success. Mine went down, then nearly doubled, then nearly tripled.

    I know I've read that antigens and such aren't good indicators for everyone. That some MOs don't use them at all. I don't have relevant scans or even a recent PET to compare the now to, so I fear a blood test could take away a drug that I think works. But what do I say? I cooked last weekend and I'd stopped cooking for months? I'm doing my own laundry again after more than a year of farming it out? I'm coloring my own hair again vs. going to a salon? Would a very academic-oriented male MO understand the significance of those things?

    And WTH is a lesion?

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited January 2019

    feline, as far as I know, a lesion is the same as a tumor. But OMG what the heck is wrong with your doctor!? Six months ??? You know there are ladies in here who had/have liver Mets and they are still doing well YEARS later.

    I loved Doxil. I had weeks on it where I felt so normal. But it did not work for me either and after 3 months I am moving to Gemzar/Cisplatin. I feel like you have more options still.

    Maybe get a second opinion?

    Sunset


  • kanga_roo
    kanga_roo Member Posts: 302
    edited February 2019

    Gday all, I have been reading the posts on this thread since my own diagnosis last year and appreciate the insight and information (good and bad) that you all willingly share.

    Felinemum, I know how petrified you must feel. Initially, with my diagnosis, I didn’t think I would see Xmas 2018. What I have learned from my journey so far is don’t consult Dr Google (usually too out of date to be relevant) and there are always new drugs and treatments being discovered that can prolong our lives or improve our quality of life.

    Initially my surgeon suggested a mastectomy and chemo, but my oncologist suggested I go on the Kisqali/letrozole combo instead as I met all the criteria (denovo, post menopausal, no prior treatments)

    I had my yearly tests last week. My bloods are normal, sugar is good, can't measure my liver met it is so small and my ultra sound findings of left breast mass have gone from 28 x 27 x 67 to 17 x 11 x 16. I hope the Kisqali combo will keep working for me in 2019! The only real side FX I have is lethargy and an occasional hot flash.

    Hoping 2019 brings some innovative treatments for us all so we can get off this roller coaster ride!

    Jackie


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

    Welcome, Jackie! Glad Kisquali/Letrozole is working for you.

    Feline, your predicament must be frustrating. It is hard to know anything when your MO doesn't have a baseline scan from the time you started Doxil with which to compare it. I agree, there is certainly a possibility that Doxil is working and your liver could have looked a lot worse before you started it. Doxil provides a good quality of life. What about talking to your doctor about doing another scan in a month or two to confirm how things are going? Or seeking a second opinion?

  • candy-678
    candy-678 Member Posts: 4,166
    edited February 2019

    Hi all.  I posted yesterday ( Jan 31 ) on the Ibrance thread a LONG post about my GOOD MO visit.  

    Summary-- Last CT (Jan 2 ) shows possible new blip on liver.  The MO discussed with radiologist and they think just "artifact" so the plan is to recheck it in 3 months at next CT.  

    My question I posted on that thread is for Grannax so I thought I would post here also. I asked my MO about the possibility of Y0 in the future for me.  She said it is not applicable for me since I have mets in bone also.   She said Y90 is for liver mets ONLY.   Is that correct???? 

    Thoughts....

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited February 2019

    Candy,

    That is correct. Liver only.

    Sunset

  • GG27
    GG27 Member Posts: 1,308
    edited February 2019

    Candy, that's what I was told as well. even though my bone mets are stable & have been for 4 years.

  • MJHJAN1014
    MJHJAN1014 Member Posts: 622
    edited February 2019

    Candy, the Y90 will not treat bone mets, but you CAN have it to treat your liver mets. In my case, the bone mets were stable, but not liver. My MO thought they would only do Y90 if there was only a single stubborn liver met, but not true. He referred me to my IR, and I was the first breast cancer patient she had done. Get a referral to an IR and see what he/she thinks. they will request MRI of liver. Best, Mary Jane

  • candy-678
    candy-678 Member Posts: 4,166
    edited February 2019

    Thanks Mary Jane.  Rereading my post I don't know if I was clear.  I know Y90 is treatment for the liver, not treatment for the bone.  But if the bone is stable, but the liver mets is growing can they do Y90 to the liver to knock it back??   Maybe I asked it wrong to my MO also.  She said I would not qualify because it is the bone also.   Is Y90 used in patients with mets to more than one area, if the liver area is worsening?  We don't do Y90 locally.  So when/if the liver mets worsens ( possible area of concern on last CT, will recheck in 3 months ) I will ask again and see if I can go to IR at a larger cancer facility.  Grannax and others that had Y90 done----do you have mets in more than just the liver???