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Reaching out for help -11 years in - mets on small intestine

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wmukluk
wmukluk Member Posts: 11

Maybe I should have reached out a while ago, but here I am. I've been, as you can see from my profile, on a lot of treatments. I trust and love my onco. But I've got mets on the outside of small intestine which is causing a blockage that is being very stubborn. Started epirubicin last week. I've been out of work since October 30, having enormous trouble keeping food down, and have been going to the hospital almost every day for hydration. We're not quite having "time to stop treating" conversations, but I know they are close. I'm willing to keep trying, but the options are slim.

I've asked for a surgical consult, which I am getting, but have been told that surgery is hardly ever an option at this point.

I'd love to hear from anyone who has words of support, or commiseration, or similar experience. Thanks for listening -

Wendy

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  • Jaylea
    Jaylea Member Posts: 440
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    Wendy, oh my gosh, what a hard place to be in. So sorry to hear you're having eating issues. It sounds like you're doing everything right - getting a surgery consult and trying a different chemo. Hopefully your MO is advocating for you in all this. Sending up prayers for successful treatment and comfort for you.

  • wmukluk
    wmukluk Member Posts: 11
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    Thank you, Jaylea - sounds like you're in a spot too. Eribulin worked really well for me for a while, although the neuropathy was crazy. BTW, what's an MO? New to these boards.


    BTW, I've decided to eat anyway. I miss food - if it doesn't stay down, well, at least I enjoyed it for a little while.... ; )

  • moderators
    moderators Posts: 8,287
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    wmukluk, we are all here for you. You are definitely doing everything right. Would a second opinion be an option for you? Have they suggested any clinical trials?

    By the way and MO is a medical oncologist. We have abbreviations here: https://community.breastcancer.org/forum/131/topic...

    Gentle hugs,

    The Mods

  • BevJen
    BevJen Member Posts: 2,341
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    wmukluk,

    You might want to look up shetlandpony (not sure if there is a space there). She, like you, had some sort of a blockage and she also has ILC. If you go into her profile, you can see where she's posted about this. She has had stents inserted that relieved some of the blockage. I don't think it was in exactly the same place as you, but her info might be helpful.

    Good luck.

  • wmukluk
    wmukluk Member Posts: 11
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    I've asked my onco; he says there aren't appropriate clinical trials for me at this point. I've skimmed through some lists online, and I am not eligible for many. I don't have tumors, and I've been on many, many treatments. On a positive note, today I am able to eat and trying to be positive and active, and it's helping. Thank you so much

  • wmukluk
    wmukluk Member Posts: 11
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    Thanks for this great lead! I have a meeting with the surgeon next week, and even though he's already said he doesn't think surgery is an option, I will ask about a stent.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Hi, Wendy. My obstruction was of the common bile duct, which caused jaundice. I currently have two plastic stents which are working well. The biopsies showed benign tissue but my onc does not trust that, because of how sneaky ILC is.

    What I can tell you is that my situation has required coordination between my breast cancer oncologist and the GI team at my cancer center. I have seen a liver/biliary specialist and an endoscopy guru.

    Are you at a major cancer center where you can coordinate with the relevant specialists?Have you had recent genomic testing, perhaps a liquid biopsy, to get treatment ideas? A certain portion of metastatic ILC shows ERBB2 mutations, for example, and there is a targeted therapy for that (neratinib)

    Damn ILC.

  • nkb
    nkb Member Posts: 1,561
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    Wmukluk- you might also want to reach out to Liwi- she had an intestinal blockage also and has ILC

    Huf

  • wmukluk
    wmukluk Member Posts: 11
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    Thank you so much

  • melmcbee
    melmcbee Member Posts: 371
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    Wmukluk, hi. I just found out that my Er pos ILC has metastasized to my entire colon and changed to ER negative. Im not sure of her2 status. It onviously hasnt shown up on CT scan until it narrowed an area of my colon. My bloodwork has been normal. I dont know how long its been growing. Im scared and shocked. Any info on your upcoming treatments would be great. I cant find much info on intestine mets. Hoping you are feeling better and getting the answers yu need.

  • wmukluk
    wmukluk Member Posts: 11
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    so sorry to hear this. I did really well on Faslodex, and after that Eribulin worked well for a while although the neuropathy was rough. Right now on epirubicin with fingers crossed; I'm almost out of options

  • EV11
    EV11 Member Posts: 86
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    wmukluk-

    It looks like you have been off anti-hormonal medications for quite a while. It might be worth considering a re-visit to one of those, especially if you know that your more recent mets are still ER+. If you can deal with the injections, fulvestrant would be the most potent, but any of the AI's would be worth a try, also.

    You can also consider asking for one of the trial meds on "compassionate use" or "right to try" basis...that way you get the trail med, but don't have to be enrolled in the trial, so you don't have to meet the eligibility requirements.

    Also, push the surgeon for consideration based on symptom relief more than actual treatment of your cancer. Sometimes docs are more willing to do surgery to make you more comfortable, even if it won't likely have much impact on your overall survival. But being comfortable for the time you have left is certainly preferable to being miserable!

    Please update us and let us know what you have decided for treatment...and I hope whatever it is, you are more comfortable.

    Elizabeth

  • wmukluk
    wmukluk Member Posts: 11
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    My onco believes my cancer became resistant to anti-hormonals after symptoms landed me in the hospital while on Afinitor and exemestane, but I can ask again. I did very well on Fulvestrant - 5 years without progression. I'll ask about trial meds. The surgeon was very clear that even opening me up would do me harm. He did leave the door open for interventions to relieve symptoms when I have exhausted treatment options, but we didn't talk about those - yet.

    I'm going to continue on the Epirubicin for now as long as it's keeping the pathways somewhat open. The fatigue is a bitch, though. Fingers crossed.

    And thanks.

  • Dolphinblue210
    Dolphinblue210 Member Posts: 1
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    i, too, have mets to small intestines, not many of us around. I was just diagnosed in Jan. Not sure what to expect. I say keep trying different modalities and add in alternatives for your comfort. I wish you well.

  • Kimchee
    Kimchee Member Posts: 94
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    I don't know how much more I can take

  • ninaca
    ninaca Member Posts: 228
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    Just found out about this topic and realized I am in the minority with ILC which is sneaky and spreads to different places. In December 2019 I had MBC to the Illeal (place where small intestine connects to the large intestine) and had a successful emergency laparoscopic small intestine resection (and they threw in an appendectomy). An ILC tumor has wrapped itself around the outside of the illeal, squeezing it so food passing through is a problem. I was having problems for almost a year with the GI tract (including vomiting through my nose), they just kept saying eat more fiber. Finally a CT scan showed the thickening of the wall of the intestine and the Surgeons perked up and said come in tomorrow for surgery. After surgery, a follow up PET scan showed Liver mets and a perirectal lymph node. After 14 months of Xeloda all issues have been "resolved" (scans clear) except my CA15-3 markers have been rising rather dramatically and I'm afraid it is spreading elsewhere but just not showing up. Am really worried. Hope you all are doing well. Nina

  • seeq
    seeq Member Posts: 1,131
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    NinaCA, Have you seen this thread?

    FES PET Scan for Lobular

    https://community.breastcancer.org/forum/163/topic...

    KBL participated in a trial for this type of scan recently - it was the first PET to show her ILC. (And it was somewhere out west - Oregon? maybe California? )

  • kbl
    kbl Member Posts: 2,796
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    Hi, SeeQ. The trial was in Utah. The doc there said this PET is not great to see the liver or small bowel.

  • seeq
    seeq Member Posts: 1,131
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    KBL - well, that's a bummer. I feel for you guys not being able to 'see' the status of things.

  • kbl
    kbl Member Posts: 2,796
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    Thank you, SeeQ. Yes, I just have a feeling I will know when it’s progressed, when it’s too late and I have symptoms. That’s how I found it the first time. That’s what I’ve been trying to avoid.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    KBL, does your onc regularly check CA 19.9 for you?

  • kbl
    kbl Member Posts: 2,796
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    ShetlandPony, the last time I had a 19-9 was in 2016 when they thought it was multiple myeloma. They did four tumor marker tests. All four were high back then, and they never mentioned that was odd. When I asked the doc why, he basically said they dismissed them because they were all high. I recently asked for a CA125 to see, and it was over 1400. My doc didn’t even flinch. She said it’s because of the breast cancer. The rest are high as well but not that high

  • ninaca
    ninaca Member Posts: 228
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    Dolphinblue- how are you doing with small intestine mets? How are they imaging them? So far surgery took care of mine for now.

    SeeQ- I called Dr Ulaner about the FES PET and I will be sending info to see if I qualify. He is in southern California at Irvine, and I was thinking I could drive there from the Bay Area for a small vacation.

    A recent symposium on ILC was this June. The link is http://ilcsymposium.com/ . It was an International symposium with ILC experts. The first and last day were the most understandable for me (lots of scientific jargon for some of the other sessions).

  • seeq
    seeq Member Posts: 1,131
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    NinaC - I hope you qualify for the trial.


    So, just by chance, I decided to sign up for MBC Connect (based on a previous post/thread on BCO). Besides their surveys, they also run a matching for trials. There were two in my results for the new PET scan with F18 tracer, whichseems to be the FES PET. I think this because one was the lobular trial in Utah, the other was for PARP expressing tumors at MDAC- Houston. I'm hoping that means there would be a broader application for the new method - always a good thing when you want something experimental go keep moving forward.

  • kbl
    kbl Member Posts: 2,796
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    SeeQ, the trial in Utah is the one I did in June. It was a great experience.

  • seeq
    seeq Member Posts: 1,131
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    KBL - I figured that was it. I thought it was interesting they're looking at another application for it.

  • kbl
    kbl Member Posts: 2,796
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    Yes, they have two arms, if I’m not mistaken. I asked about the second piece, but the doc said I think it was for people who don’t have more treatment options. I’m still on my first line.

  • Ilikedogs
    Ilikedogs Member Posts: 19
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    SeeQ, I noticed your signature line with your diagnosis and treatment - did they not detect that tumor on your breast during first 4 weeks?! I am assuming they looked for it with MRI/etc? It was that small and yet metastasized?

    I can’t even imagine the shock you must have been in. I am learning so much about this disease

    I hope you are doing well!

  • seeq
    seeq Member Posts: 1,131
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    Ilikedogs- yes it was a shock, especially with the size and number of tumors in my liver. By the time I had the biopsy, I was expecting some kind of liver cancer, not bc. The PET showed a small area near the chest wall, so they went looking for it with the mammogram and breast u/s. It was only 15mm and had not shown on previous annual mammograms. I'd also had a clear liver MRI a few years earlier.

  • Jjzn
    Jjzn Member Posts: 114
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    They just found cancer in my small intestine. It was found because I couldn't eat and was throwing up. I assume I will have surgery of the small intestine to fix the problem. Has anyone been told no they can't have surgery? I don't know what the alternative would be?

    Worried that they will say surgery isn't worth it since I have liver Mets.

    Julie