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peritoneal carcinomatosis

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  • ninaca
    ninaca Member Posts: 228
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    Moomi, I ended up with a small intestine resection in 2019 after a year of trying to diagnose why I was having stomach "issues" including vomiting (once through my nose). Finally a CT scan showed the walls of my small intestine thickening and gradually closing down the digestive tract and a peritoneal node involved! My markers had been stable and nothing in CT scans before that since 2015. It turned out I have LBC, Lobular breast cancer, and it had grown around the outside of the small intestine, squeezing it. Lobular is sneaky that way, small little tumors, net like, instead of bigger solid ones. They have recently found it in my omentum, and pelvic free fluid (took 4 months of searching for cause of very high markers). Taxol has now brought scans into "resolved" range, and markers are almost near normal. Very scary. I don't know what to say about your digestive issues. I hope you can find a good solutions soon.

  • moominmamma
    moominmamma Member Posts: 35
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    Hi Ninaca, Thank you for responding. I am so glad to hear Taxol has helped control your cancer. I'm hoping that Everolimus is helping some. I have been going through longer stretches without pain/food getting stuck in bowel, if symptoms are accurate. Had an MRI enterography by GI doc last week, which showed one area of partial small bowel obstruction and inflammation, and surrounding bowel distension. Answer is BC meds, he said, too risky to put in a stent at the location. So I'm waiting to see if tumor marker coming down yet, and if meds work. It could be my dietary/medical mgt is making it easier to eat, I don't know. If scans not good in 6 weeks, on to Xeloda for a try. Thanks again for sharing your experience!

  • kbl
    kbl Member Posts: 2,740
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    moominmomma, I had never heard of the enterography. I’m sorry you’ve got some obstruction, but I’m glad the pain is better.

    I have always had tummy gurgling. I mean all the time. I have also suffered with constipation, but it’s been a little worse lately. My stomach doesn’t gurgle at all anymore, and I’m wondering if something is going on in my bowel. I don’t have pain, though, so I just keep telling myself it’s nothing. I have the cancer in my bones and stomach, so I always wonder where it’s going next.

    I hope your new med does the trick. For what it’s worth, I’m on Xeloda, and I find it very tolerable, but I hope you get a long time on the treatment that you’re on now.

  • moominmamma
    moominmamma Member Posts: 35
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    Thank you for your kind words. Fwiw, my CA 27-29 is over 700 now, highest it has ever been but small increases over last few months. Now 2 months on Affinitor, scans in a month or so. I am feeling well enough however, my DH and I are flying to Grand Tetons/Yellowstone for 8 days starting tomorrow. This is a trip cancelled twice over the last year, first when our first grandchild was born early and we went to Chicago to help care for her and new parents, second time because of COVID fears when Delta was rampant and crowds huge out there. I have never been, very excited to go!

  • ninaca
    ninaca Member Posts: 228
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    Moomi- Hope you had a good trip to Yellowstone and Grand Tetons. Is Afinitor still working- and bowel issues are resolving. If you switch to Xeloda, at least it is a pill. I did Xeloda during Covid so I would not have to come in to the infusion clinic. They even delivered the drugs to my house for free! It was harder on me than Taxol, my feet specifically were more sensitive to blisters, learned to walk around in soft Dearfoam slippers most of the time. I looked up MR Enterography after your comment- I'd never heard of it before but it sounds like a good test for looking at abdominal problems. Take Care...

  • moominmamma
    moominmamma Member Posts: 35
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    Hi Ninaca, We loved the Grand tetons and Yellowstone. I was able to the so-called easy hikes, about 5 miles a day, despite SOB (lots of rests to catch my breath)and the beauty of the place was so magnificent it made me very happy. Best of all, no stomach issues on the trip! I thought meds must be working I felt so well. Unfortunately within 2 days after we got back,I ended up in hospital with another blochage. Ugh. My oncologist has ordered a pet scan now, as he suspects may be time to switch. My diet is now clear liquid/full liquid, mostly seem to be doing OK on it.

    Did I mention we were in Yellowstone when it flooded & closed? Crazy experience, so terrible for Gardner residents. But we were able to see a lot, and we ended up driving back to Jackson through Idaho, Alpine, to explore more of the Grand Tetons. I recommend it!

  • maryland
    maryland Member Posts: 1,047
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    Hi all, I was dx with extensive bone mets in 2020, been stable but had a PET/CT last week and report came back saying..

    Interval development of a cluster of hypermetabolic mesenteric lymph nodes within the right lower abdomen, adjacent to right ureter, which are concerning for metastatic disease.

    My MO is ordering an abdominal CT and then biopsy of the nodes. Also my CA 27.29 and CEA are creeping up over the last 6 months or so. Hard to find info on any of this, I’ve come back to BCO after a 6 year hiatus, I’ll read back on this thread but wanted to jump on and say hi, thankful for the info and support I know I’ll find here. My name is Mary

  • lawgirljenn
    lawgirljenn Member Posts: 4
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    Hi Maryland (Mary), and everyone else.

    I'm Jenn. I'm 43. My original diagnosis was Stage 2b ILC back in 11/2012. In Feb 2020, I was diagnosed with Stage 4 with mets to bones only. However, I had been having stomach issues for over a year prior, and eventually the scans showed mets to the peritoneum. It has since spread all throughout the GI system.

    I was sent to the ER earlier in the week because I was unable to have a bowel movement for over four days. Turns out the cancer is all over the colon, constricting it in such a way that it's causing low motility. I have a meeting with my oncologist on Monday to discuss everything. I just had my 5th dose of Abraxane last week.

    I don't know what to think anymore. I feel like I'm running out of options. Abraxane is my fourth line of treatment. I know there are lots more out there, but the cancer seems to adapt quickly. (Like the Borg! LOL - sorry, I'm a nerd).

    I've made my peace with dying for the most part. I'm just not ready to leave my family. My kids are 12 and 16. They still need me. I want to see them grow up.

    I'm just babbling at this point. It feels good to be in a space where people understand. Stage 4 is so lonely. I hope we can get this thread active again.


  • nkb
    nkb Member Posts: 1,561
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    Hi Jenn,

    I don't know what treatments you have already tried and I hope you find a good one next. I am sure that other people will chime in and you may want to check out the clinical trials thread as well.

    I just want to mention that there is a new treatment that may be really worthwhile that have just been approved for Her 2 low (when your FISH is negative, but, IHC is 1 or 2+ (this occurs in more than 50% of people that are Her 2 negative) you can ask for the test to be done on a biopsy or may find it on the path report of your original breast mass.

    this medicine is called Enhertu or TdXd or Trastuzumab deruxtecan- I would ask your doctor about it. also consider Neratinib in combo - see Shetland Pony's old posts.

    Good Luck

  • maryland
    maryland Member Posts: 1,047
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    lawgirl, you were 33 at original dx and your kids were 2&6? Oh how hard that must have been, and I'm sure still is. I've not come to peace with dying yet, I got a bit unconcerned with it after being stable for the past 2 years, now I feel like it's come to slap me in the face again. However I am 64, my son is long since raised and as much as I hate the idea of leaving my granddaughters 8&3 they do have parents. I'm not saying that I'm not hopeful that we both have some years left. I guess with this f-ing disease that's the way it goes, as soon as we get a bit comfortable with stability we are reminded to look it all in the face again. Now I'm babbling. Stage 4 is lonely that's why I decided to come back to BCO. It helped me so much in the beginning, I made some good friends, then I found that the more time I spent here the more I thought about BC and I wanted to move on. Then I found out about the bone mets in 2020, at the same time as the beginning of Covid, I retired, got divorced after 20 years and moved. I've been too busy to think about cancer, but this has been a punch in the gut. I'm down to 2 friends that I talk to about it, the ones that really want to know. I’ve found that when people ask “how are you?” The answer they really want is “I’m good.” So they can move on to topics other than cancer. Sorry about the rambling message, I've been wallowing this morning but I'm going to get up now, put on my big girl panties and start my day. Hope yours is good.

  • ninaca
    ninaca Member Posts: 228
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    Maryland, I had emergency laparoscopic surgery to my small intestine and it came back ILC cancer (not seen on scans). It was also in a perirectal node where a biopsy confirmed BC ILC. It has gone to my pelvic fluid (helpful in getting meds changed) and my omentum. Basically peritoneal carcinomatosis. Currently Taxol has made it all disappear on scans, but one never knows where and when it will reappear, It's a tough place to treat and find. I just try and go with what's working and keep hoping all this drug research will be my friend as it has been in the past. I sometimes get information overload and go back to playing words with friends, or bingeing on the new Star Trek series that have recently been released.

  • moominmamma
    moominmamma Member Posts: 35
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    Hi folks! Ninaca, when you say Taxol has made it all disappear on scans, does that mean you don't have gastric problems either anymore? If so, very promising treatment! Myself, I had another hospitalization for obstructions 2 weeks ago, (no NG tube this time because I had dehydrated myself to try to deal with bloating & gas pain), but was put on IV and watched for 3 days for stomach to clear liquids, and then went home. However, the scans documented PE (pulmonary emboli) in right lung, so now on blood thinners. Have been off Everolimus for 2 weeks, onc is keeping me off until I have another MRI enterography (close review of intestines) to see if there is a change from May. My pet scan in July is basically stable compared to March. The CT scans in latest ER visit showed increased bowel thickening since June, either inflammation or PC. I should know by end of next week what next drugs will be. We know Enhertu will be in the picture, but not concurrently with Xeloda doc says. When I'm not having stomach pain & nausea I feel good, I can swim, walk (not in heat though!!!), travel. Spent last long weekend in Boston, MA area, swimming in Walden Pond, enjoying Gloucester beach and the arboretum. No stomach pain, phew!

    It is so difficult & depressing to have stomach issues, terrible for QOL, and I feel for all of you who have joined this club. The good news is - according to my onc - that it can improve with the chemo drugs and antihormonal therapy - so he said not to give up hope!

  • ninaca
    ninaca Member Posts: 228
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    Hi moon, My doc again said it is a good time for me to take a vacation from Taxol (he told me 3 months ago too but I didn't listen). My PET is stable with no Avid uptake anywhere. BUT it does show Parietal peritoneal thickening. I asked my doctor if this is still cancer and he said ye, it's just not showing up on scans. My markers are beginning to go up. If I stop Taxol for 2 months I should have good quality of life for a while, give my bone marrow a rest from the chemo and stop the neuropathy in my feet from getting worse. BUT the cancer will come back if I stop (and even if I don't stop). I could continue back on Taxol except my MO is very excited about me trying Enhertu, he thinks it will be a game changer. While it's not antihormonal it is a drug conjugate that lets chemo into cells in a targeted way. Do I stay with Taxol while it appears to be mostly working, as I continue with side effects, or take a break now and restart in 2 months? At the moment I don't have stomach pain, I do take a Tums every night to avoid indigestion. I do worry about my weight gain- from decatron I think, and wonder if it is ascites. this is never mentioned in my reports but I assume pelvic fluid or bloating could be called ascites? I only hear of it if someone needs it drained.

    I was on Xeloda for 14 months, it was a good drug and came along at the right time for me. Good luck with your decisions and QOL.

  • moominmamma
    moominmamma Member Posts: 35
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    Hi Ninaca,


    I wonder how you are doing and whether you have switched off Taxol to Enhertu. And if so, how is it going?

    My most recent PET shows no SUV pickup, but increasing ascites, and an MRI enterography says no blockages at that time, and decreasing inflammation of intestines. Still have infiltrative changes to mesentery. So despite pretty good scans, I still can only manage a full liquid diet. It seems whenever I add any soft but solid food I get blockages creating pain, bloating, nausea, that can take days of minimal clear liquids only to finally get better. And constipation continues to be a problem. The ascites is giving me a round belly and my legs are now swelling dramatically. I gained 8 lbs since Sept 1, water apparently. So, doc is switching me to Piqray, and then Xeloda if Piqray doesn't work. He wants me to feel better. Continuing to hope!

  • ninaca
    ninaca Member Posts: 228
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    Hi Moon, I am still on Taxol. Doc said I could stop and take a vacation since scans are stable, I may not have another chance. I'm afraid to stop the Taxol. He thinks my neuropathy will get worse and may be permanent. My markers are beginning to rise so I think somewhere down the road the PET will pick up something and I will have to start a new drug (Enhertu). It's the pattern with chemo that it is good until it's not, unpredictable when. So sorry about your liquid diet, no SUV activity good, blockages bad. Hope Piqray works. Are you lobular? Mets in this area are usually lobular. Take Care, you will get better!!!

  • moominmamma
    moominmamma Member Posts: 35
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    Hi Nina, I've never been dxed with lobular cancer, only DCIS and IDC. But on my biopsy from underarm lymph nodes when I was dxed metastatic, report said poorly differentiated tumor spreading all over underarm. That was a bad sign as it means it's hard to contain and may go a variety of places, I think. My doc describes my cancer as tiny seeds of cancer causing changes to mesentery and omentum, bowel wall thickening, etcso even though nothing lights up as hypermetabolic on pet, just to have these changes indicates a cancer spread. The ascites fluid leaks from the peritoneum, and since I don't have TB or cirrhosis, PC is the diagnosis, and the bowel problems likely caused by little cells adhering to outside of bowels, stiffening them, producing scarring that further increases likelihood of blockages. So here we are. Piqray arrives in mail tomorrow. I'm afraid of it's SE, honestly.


  • ninaca
    ninaca Member Posts: 228
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    Moon, I am also PC. Your profile says that you were ER-, PR- and HER2 -, then became Her2 + in 2012. Have you had recent genetic testing? Piqray has been tested on people with a BRCA mutation, or PICK3CA mutation. Other mutations like PD-L1 have treatments and immunotherapies available. Have you been taking Herceptin with your other treatments or are there reasons you are not on the drug? If you go to Xeloda, it worked well for me for 12 months. There's a new drug, TUCATINIB that includes Herceptin and Xeloda (capcitabine), also ENHERTU uses a drug conjugate that helps direct the Herceptin and work better on cancer cells. The combination is much more effective than just one therapy alone. Everything has side effects, sigh.

    Is it possible to drain the fluid? are you taking anything to reduce the fluid build up (like Lasix)? Systemic treatment is the way to go.

    Hugs, Nina

  • lisa130rlc
    lisa130rlc Member Posts: 1
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    Hi all! My cat scan just showed peritoneal carcinomatosis. Ihad mets to the bones for the past 12 years.never expected this diagnosis. Just started Vercenzio and fulvestrant injections. hoping for the best but preparing for the worst. i'm 70 and i've lived a good life but we always hope for more!! Feeling alone and hoping to connect with others on this site. Thank you!

  • ninaca
    ninaca Member Posts: 228
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    Hi Lisa, I'm 75 (76 next month) and I'm currently showing no activity at the site of my peritoneal mets. Original liver met diagnosis in 2002, gone within 6 months on letrozole, back in 2015 then Ibrance and Fulvestrant helped stabilize everything until 2019. That's when I had surgery to remove the lobular tumors around my ileum, small intestine. 14 months of Xeloda kept everything quiet until my markers, CA15-3 rose to a high of 2200. It took a long time for something to show up on a scan, my cancer is lobular, and the tumors are smaller and not as visible, but finally I got the diagnosis, activity in my pelvic fluid and omentum. I've been on Taxol (my first infusion chemo) now for 10 months and everything is "quiet" on the scans. I have neuropathy in my feet but am considering a QOL break.

    My suggestion is to see if your Verzenio and Fulvestrant can be effective in managing your current mets. Systemic chemo is what we need for our mets. What does your MO say? Do you know results of your genetic testing, or somatic genetic testing? So many different drugs are being found for identified mutations. Right now I have just added a new chemo to my list, Enhertu will be next, because I am Her2 low, I have now become eligible for this drug. There is always hope on the horizon that something new will be found for our particular problem. We are a "rare" type of mets, but we do exist and keep track of what is working for us. Where do you live? I'm in the Bay Area in California. You are not alone, so take care, be hopeful. Nina :)

  • moominmamma
    moominmamma Member Posts: 35
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    Hi everyone,

    First, best wishes to Lisa, newly diagnosed with PC. I also believe verzenio/fulvestrant is a good combo to try to stop the carcinomatosis, and that if it doesn't work well enough or for long enough there are other options.

    So my 2nd bout of cancer in 2012 was ER-,PR-, HER2- positive, for which I was treated with TCH (Taxotere, Carboplatin, Herceptin). My original cancer (DCIS) in 2007 however was ER-+, PR+, and my metastases in 2018 were also ER+, PR+, HER2- -. So I was started in letrozole/ Ibrance which worked for 2 years, before my markers started rising and signs of mesenteric infiltrates suspicious for PC appeared on scans. Switched to Fulvestrant/Verzenio, which I was on for about 15 months, when it no longer stopped increasing bowel wall thickening and ascites developed. After a stint on Everolimus - worked somewhat but not enough to stop ascites and intestinal blockages - I'm now on Piqray for 2 weeks. So far so good, digestion actually better (no constipation!). I've even eaten a little soft food over the last couple days without any I'll consequences, after being on mostly clear or full liquids since end of June. I have now developed noticeable edema in my legs and groin, left more than right, over the last months, and had some ascites drained but only about 400 ml. (Last paracentesis drained 1200 ml in March). So the swelling/sudden weight gain is more than the ascites. Very weird, but hopefully new meds will help. I will see my docs at Northwestern (in Chicago right now) for labs/Faslodex shots and check in on what else can be done about the edema.

    Hopeful things get better!

  • moominmamma
    moominmamma Member Posts: 35
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    I forgot to add that I have the PI3CKA mutation, which is being rechecked now as it's been a couple years since first identified. No other genetic mutations at last testing.

  • daughterof
    daughterof Member Posts: 47
    edited March 2023
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    Hello everyone,

    Hoping to find some information for my dear mum here. Originally diagnosed in 2012, MBC in June 2021. Er-, Pr+,Her2-, starterd ibrance/letrazole combo which only slowed the progression and she has SBRT on her biggest two mets in march last year.

    Stable disease in Dec 2022 but march 2023 she progressed a lot. Liver mets now 10+ cm with peritoneal carcinomatosis and ascites. Breaks my heart because she was getting used to living normally again with ibrance. Now her oncologist wants to start her on IV cycles of AC chemo to try to reduce tumor burden. I am worried this is too strong and scared weaker chemos won't work after. Did anyone do AC for peritoneal carcinomatosis? What are your experiences? I feel like oncologists in my country are limited with knowledge and new therapy options.. please, some advice and encouragement is very much needed.

  • ninaca
    ninaca Member Posts: 228
    edited April 2023
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    Hi daugherof- Is she still ER-? sometimes markers can change I see her original diagnosis was ER+. New for ER+ patients is the wonder drug (at least for me) Enhertu- which after taking for 2 weeks had all my digestive and fluid symptoms disappear (I have peritoneal carcinoma and it's in my colon too). I had a clear PET in November, and lots of tumors in January so made the the sudden and immediate switch in 2 days from Taxol to Enhertu. Markers have come down dramatically, but I still have not had confirmation with a PET Scan (due in May) I had AC at the beginning of my cancer journey in 1998, a very effective drug, which can be harsh (lose hair, affects all fast growing cells instead of just targeting specific cells). You can still respond to other therapies, like Taxol and Xeloda because they attack the cancer in different ways than the AC.

    I am 76 and seem to still be able to continue on this journey that has been full of surprises, both bad and good. good luck to you and your mother as you continue on this journey.

  • daughterof
    daughterof Member Posts: 47
    edited April 2023
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    Hey Ninaca, thank you for replying. She was strong ER and Pr positive back in 2012 and her2neg. Her liver biopsy from 2021 shows er0 pr6 and her2neg. Her oncologist doesn't think she needs to do another biopsy which I rly disagree with. We're in eastern Europe and due to many new meds not being approved by the insurance yet doctors don't seem to care to recommend and learn about these new meds at all..

    Anyway, her condition worsened dramatically over the course of 5days. She developed severe ascites and her liver started failing with alt normal but AST around 250.. she also got deep vein thrombosis.. today they started her on weekly Taxol cuz they don't think she can handle AC. I'm even worried how her liver is gonna handle taxol too..

    Ive heard about enhertu but ofc it's not approved here yet. I also thought it was for Her2 positive and her2 low only? I'm glad it worked wonders for you. I've seen your posts on the liver mets thread and your journey has really been inspiring.

    I'm so worried about my mum.. with the country we live in and meds being crazy expensive idk what options she has left. If she progressed on letrazole/ibrance combo could she still get faslodex if Taxol reduces the tumor burden?

  • ninaca
    ninaca Member Posts: 228
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    Hi, I Had to switch to Enhertu, Taxol stopped working and has left me with neuropathy in my feet I was on it for 14 months, maybe should have taken the vacation my doc said I should take after 8 months. I did plan a break from Taxol in December but then got Covid and had no treatment for a month. Markers got very high and then finally something showed up on my PET (mets all through gi system) so I was able to switch to Enhertu. Within 2 weeks all my symptoms, constipation, very little going through my GI tract, bloating, etc. disappeared! It was like a miracle, being able to feel "normal" again. I thought there was little to be done with current diagnosis. I recommend Enhertu before you try Piqray. There was someone in my infusion grouping (4 of us in chairs) who had Piqray with terrible side effects and little progress and was now on Enhertu with lots of progress and little side effects. Ask you doctor about his opinion. It can be a game changer. They are also having trials using a new drug with less side effects for your mutation. Hope everyone is doing well, it's been a while since I've visited here. Just got back from Hawaii (originally planned for 3 days before I got Covid). Hugs, Nina