peritoneal carcinomatosis
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Cathy - love your perseverance! Also amazes me how your body seems to work though these issues and sort them out eventually. (I realize it’s not an easy process though!) Glad your episode is done and you are feeling better.
Artist - were you able to see your MO? I agree they should have a sense of urgency. It’s frustrating, to say the least.
Keep going, gals!
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retro and southern, finally my Cobra let my providers know I was good to go. 4 weeks after my initial insurance expired. It is supposed to kick in very quickly following so what took so long I am clueless and furious! Just hope the new treatment works well now. I get my first infusion today and am of course rather nervous. It is also snowing like crazy......
retro, I am so glad you are feeling better! The days of feeling actually well seem so far and few between sometimes.
Last week I was in absolute misery from the ascites. I have an ongoing appointment for a para once a week but probably need it by day 5. Their scheduling is rather rigid and I just did not want to go the the ER and sit in a chair for 3 hours so I waited it out. But YOWZA! I was sooooooo miserable. They took off record amount for me. I pray so hard this new Tx kicks ascites ASS!
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Artist, I’m so glad you were able to get your treatment today. I hate that the ascites has gotten so incredibly bad for you! I sure hope this Gemzar knocks it back quickly. You would think that there would be some research on various chemos effectiveness on ascites. One chemo to add to your arsenal may be what I’m on now: Halaven. My latest scan showed my small amount of ascites which had increased from the previously scan, is now gone.
Finishing up cycle 11 now, just had infusion #22 yesterday. It’s 2 weeks on, one week off. Starting to feel the chemo tonight. I’m noticing the fatigue much more lately the longer I’m on it. I sure miss my days on Ibrance but I’m happy this chemo is at least working.
How is everyone else? Hoping all is going well since this thread has been a bit slower lately.
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Hello All! We are unusually quiet right now. Where is everybody?? I feel like I'm holding out for spring! We didn't have a bad winter...I'm just so over it! Had another episode yesterday. Started out pretty easy so at dinnertime I gave in and had a bowl of chicken with rice soup. I started it up all over again. Bad evening and night but feeling better this morning. Maybe that's where my head is at too! I'm just so over having cancer. Artist, I hope so much that your new treatment works for you. My ascites was never as bad as what you're going through and it was pretty miserable. I can't even imagine how miserable you must feel and fighting for insurance too. Sheri, you doing Halaven for this long is just remarkable.. How's the neuropathy? I think that was the one thing that made my Doc take me off of it. I had neuropathy going up to my thighs! It went away pretty quickly after I stopped the infusions. Hope we all have a great weekend. HUGS, Cathy
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Hi Cathy! Happy today is a better one for you. The neuropathy on Halaven hasn't been bad for me yet. I did shave my legs the other day (to shave the 5 hairs that were on them - haha) and it felt so weird. Kind-of like my legs were numb. It's from about the knee to the ankle. I don't have any neuropathy in my feet and have no problem walking. So, we will see how it goes. I do remember you had really bad neuropathy on this chemo. Otherwise for me, it's a pretty manageable chemo, with a few not-so-great days, so I would like to stay on this as long as possible. Plus, I've run through so many treatments that I don't have a lot left. What’s the cycle like on Afinitor? That treatment may be what's next up for me according to my MO.
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southern, it is always so good to hear someone is doing well on their treatment! Halaven could be next if this Gemzar doesn't work. I feel like getting rid of these damn ascites would make my life seem almost normal again despite the other annoyances like neuropathy in my hands which is not getting any better after 4 months off of Abraxane. I do beadwork and my vacuum is lapping up a lot of beads! LOL!
My insurance finally went through so we are back on track of now. It really astounds me how money has taken the humanity out of our medical system. I have several very kind, compassionate providers but their hands are often tied due to "rules".
Cathy, OH no! I was so happy to hear you were feeling better only to have a bad night. it is definitely the up and down roller coaster ride that wears me out too. I am so glad to hear you are feeling better this morning!
I'm holding out for spring and sunshine too. I need to feel the sun on this beat up body. We got 18 inches of snow last night and more expected tonight. Winter is kicking in late. Hope is doesn't push into April.....
Best to you both ladies!
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Hi Sheri, I remember that feeling shaving my legs and the lack of hair. That's about the only thing I miss....LOL Afinitor is daily along with an aromatase inhibitor. My A.I. of choice seems to be Letrozole. I can't hack Arimidex at all. Artist, neuropathy is awful, isn't it? So sorry you are dealing with this issue. I lived in upstate NY for over 6 years. I remember those storms that would come in and dump sometimes on top of the daffodils and crocus trying to come up. Hope it goes away fast. LOVE to all, Cathy
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Hey retro,
Well thing just get better and better. By Sunday night the bloating and pain were so bad I was in bed until Tuesday with a heating pad and no sleep. This morning I woke up breathless and EXHAUSTED. Went for my 2nd infusion, oxygen level was low so now on my way to get a scan for blood clot or pleural effusion. Can't seem to win even one small battle these days. I am worn out.
Hopefully they resolve whatever this is and I can get my second treatment tomorrow and I cannot tolerate the ascites much longer ( nor the fatigue, exhaustion, ect) Feeling pretty down but hopefully things pick up soon......
And yes the neuropathy stinks. It severely limits my abilities. I am a very frustrated jewelry artist
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Artist - I’m so sorry to hear about about all of these complications! Know I’m thinking about you and praying for a quick resolution of these new issues. Hope you can get your infusion tomorrow. Please keep us updated.
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Oh Artist, I'm so sorry. In my head I'm thinking a few swear words but I won't say them. What's happening to you is just awful!! When I was first diagnosed in 2002 and the surgeon would see the panic on my face, he would say to me, "You can do this!" Hang in there, Artist until they find something to help you. This just makes me sad.... You have a whole support group behind you besides your friends and family. Kick butt, honey. Keep us posted. We will all worry. Wrapping you in a big hug, Cathy
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For those of you who knew Cindy Rogers who came to this thread on occasion she passed away yesterday. She had tried several different chemo over the past six months but none seemed to help. I will miss her as we communicated almost daily.
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Hi Dianarose. Thank you for letting us know about Cindy. I'm so very sorry for the loss of one of our metster friends. I've lost my sister-in-law and one of my sisters in the last year--both to cancer. I thought I would go way before both of them...and here I am. It makes no sense and it just never gets any easier. How are you?? Are treatments helping or do you just feel like your struggling? You've been on my mind a lot lately. Thinking of you and sending lots of love. Cathy
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Thanks Cathy. I’m doing ok on Xeloda so far. I’m on my tenth cycle. I struggle mentally a lot. I get stressed every time they do labs because I know the day will come when it stops working. I get so tired of all these new things that always say in the future. We all need it now. I think winter here in Maine doesn’t help. Cold and hardly ever sunny. We just got over a foot of dam snow. I just want it warm enough to sit on the porch and watch the birds.
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Hello my Dear Metsisters,
I am cross-posting this to several forums hoping to get some insight soon. This message is more about seeking your wisdom than it is providing an update. I'm facing a crucial decision-making process and feeling less clear than ever before about which way to go.I had scans a few days ago which showed "Significant worsening of the peritoneal carcinomatosis. There is worsening thickening and nodularity of the peritoneal lining with new caking along some of the omentum. There are numerous peritoneal implants seen deep in the pelvis and also in the gallbladder fossa. * Large intraperitoneal ascites. * Dilatation of the small bowel but no definite obstruction. * Worsening small bowel wall thickening likely due to the worsening peritoneal carcinomatosis".
I just completed 3 cycles/months of IV Abraxane which did not slow this dragon down. I'll meet with my medical oncologist Tuesday and we'll be working on a plan. I'm trying to prepare as much as possible and would appreciate any insight any of you have to offer.
Previous treatments: I was diagnosed with stage III invasive lobular breast cancer (ER+, PR+, HER2-) at 44 years age in 1997. I had BL mastectomies, AMFC chemo, and radiation. 17 years later (2014) I had a recurrence with lobular mets (now ER+, PR-, HER-, AR+) in the GI/pelvic area. Since then I have had carboplatin/taxotere for the first 3 months followed by letrozole for 16 months before it failed, went to Faslodex/Ibrance for 16 months before it failed, then tried A/A for 6 months (did not help at all), and just finished 3 cycles/3 months abraxane which did not help at all either.
I have been draining large amounts of ascites (about 4000-5000ml/week) since December. I know my options are narrowing down. I had a CARIS molecular profile done from a small bowel resection tumor in August 2017. It still showed ER+, PR-, AR+, HER2-. Unfortunately, no actionable mutations or amplifications out of >150 genes tested (only CDH1 and RB1 mutations). ER, AR, and TOP01 are positive biomarkers. Others are negative.
Since the ESR1 is NOT mutated, I am debating between going back to an endocrine therapy versus trying another line of chemo (quality of life is important at this point too, of course). What are your thoughts about seeing if the letrozole might work again after a two year break? My onc is suggesting the possibility of tamoxifen since I have not tried that class, but I'm concerned about blood clots and the evidence that tamoxifen is not as helpful with lobular.
I guess the PR- cancers can be more resistant to endocrine therapy. There is some evidence that ER positive, PR negative, and HER2 negative breast cancers behave more like triple negative cancers than endocrine responsive cancers, so this is also concerning to me.
I'm not expecting any magic answers from y'all but will take your responses to heart as I try to make a decision here. Especially those of you who have ER+/PR- cancers and/or familiarity with refractory ascites, endocrine resistance, genomic profiles, or heavily pre-treated MBC, etc.
Thanks so much as always,
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Hey Dancing! I'm so damn sorry about the current status of your cancer. I almost died in 2015 and Navelbine saved my life. I was on it for 4 months. It wasn't fun but once it started to work, I was amazed at how fast the ascites, my gastroparesis, and other abdominal symptoms got better. I know every chemo doesn't work for everyone but for anyone with peritoneal carcinomatosis, I think it would be worth giving it a try. I don't think I was on an endocrine therapy with it. I wish I was better at remembering all the technical medical stuff. My brain is permanently chemo'd! When my symptoms got worse again last summer, I was again on Navelbine. I did ok on it and did feel better again after treatment. Right now I'm on Afinitor (with a mouthwash for the mouth sores) and also Letrozole. I often have breakthrough episodes now but probably from the damage already done to my "innards!" (technical term) I wish for you that your Doc puts you on just the right treatment and kicks cancer's butt! Wrapping you in a big hug!! Cathy
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Thank you Cathy. I do have Navelbine on my short list to talk to the oncologist about on Tuesday. As we know every 4 months counts at this point. What caused you to stop the navelbine each time? Was it side effects? I used the dexa mouthwash with the Afinitor also. I really helped. I also take 20g L-glutamine when I am on chemo to decrease neuropathy, mouth sores, etc. I think it really helps. 'Hope the Afinitor/letrozole holds you for a long while! Love, Orina
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Dianarose, I am sorry for the loss of our metsister and your friend. It never gets easier. I am so glad we all have one another for support. Love, Orina
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Artist, I am so sorry things have been so rough for you! I hope your scan did not turn up anything new for you to deal with. A couple days before my weekly paracentesis I was so miserable and short of breath from the fluid putting pressure on my diaphragm. I know it's a big decision, but even with everything going on I am glad I had the PleurX put in. I have many more comfortable days and hours now.
For any of you taking a chemo or med that can cause neuropathy or mouth sores, you might want to consider L-glutamine powder if you have not already. My oncologist and the pharmacist have approved it for every treatment so far. I try to get 10 grams in 2-3 times/day. You have to mix it in a liquid, so when my belly is really bloated or uncomfortable I can't manage that. But I think it has helped me quite a bit over the past few years.
'Holding all of you in love and light, Orina
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Hi Orina. I'm one of those people that gives my Oncologist a run for their money. My cancer doesn't show up so well on tests so my Onc has to guess as to what is happening. (thank goodness he specialized in g.i. cancers) I also don't react to treatments as most people do. He decided I'm missing an enzyme in my liver that helps break down the medications. ( I don't think break down is the right term but for the life of me this morning I can't think of the right word! lol) He has to watch constantly for toxicity. I often end up having to skip treatments because of bad blood tests, white cell count, etc. By the way, I recently started using L-Lysine because it is supposed to help with mouth sores but it sounds like L-glutamine does more. I might try it next. To everyone with tests, dr. appointments this week, I wish you all the best and hope for great results. Love, Cathy
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Cathy... you sound like me. My cancer is a bit difficult to track, at least the cancer in my pleural lining and peritoneum. The bone mets show up but only on a CT scan. I suspect it is because I have a lazy cancer... good news in some ways but it seems to be more difficult to treat and track. MO appointment on Friday and then a scan the following week.
Wishing you all a great week. Pat
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Dear Pat and Cathy...I know what you mean about sneaky peritoneal BC! The first three years of my mets, the scans were pretty much useless. We went by signs, symptoms and labs (including TMs) to help us figure out where things were at. Only 8 months ago did things start to show up on the scans.
May this week bring some form of joy to each of you! Love, Orina
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Hi Dancing,
I'mon vacation and just seeing this. I just wanted to say I'm on Halaven and it has been working quite well for me with not many side effects. I've tried so many chemos and hormonal therapies in the past 4 years - seven different treatments, and Halaven has been the most effective so far for my ILC belly mets and has cleared up my small amount of ascites. Just thought this was something that could be in your remaining arsenal of chemos. I hope you have a great convo with your MO.
Please keep us updated.
Hugs, Sheri
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Hi ladies! I've read through this entire post and admire you all. I apologize for asking a question without having a specific diagnosis, but I'm having a hard time finding any information regarding the peritoneum. I had an annual CT scan last week that showed a "new bandlike area of increased attenuation within the anterior peritoneum that measures 3.4 cm in diameter." I knew something was up when the nurse came in to see if there was anything new or changes to report since last visit. She game me the results of my bone scan which were all clear - great news! But, I wasn't expecting anything on the bone scan or CT to be honest. Nurse said that the doctor would give me the results of the scan. Wait! You can't just do that to me...I need to know woman! LOL So, doctor finally comes in (after a 30 minute wait with my mind going crazy of course). Anyway...she asked me if I was taking any new meds, supplements, or if I had been sick recently. None of the above, thank goodness. She then told me about the thickening of my peritoneum and that it's kind of unusual to see this in the abdomen, that she usually sees this in the lungs. What the heck? It was recommended and I'm scheduled for a follow-up CT in May. And then she asks me if I'm going to be okay, or does she need to "give me something" until then. Ummm...way to get my imagination all riled up there doc! LOL I take Lexapro, so I told her "nah, I'm good." I'm totally not freaking out about anything, but am curious. I finally got my lab results also. I noticed that all the liver functions are above MY normal (mine usually run on the lower side of normal), but right at the high normal range. Any input would be greatly appreciated.
Thanks!
Misty
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Hi Misty! You have a great attitude. I think that's half the battle. I always try to not worry til I have to. Is your cancer lobular? That's usually a higher chance of peritoneal involvement although some ductal has spread to peritoneum as well. I'm sorry you have to wait so long for another test. If you start showing signs of bloating or having unusual (for you) gut pain, I would get that checked out before waiting for that test. Take care and keep us posted. HUGS, Cathy
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Thanks Miss Cathy! I will definitely keep y'all posted. In the meantime...I'll just continue to stalk/lurk. LOL
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Hi Misty.
I agree. Great attitude. There is no need to panic until you are sure there is a reason!
My original cancer was IDC which, after almost 16 years, spread to the pleural lining of my right lung and to my bones. In August I started having some pain under my right ribs whenever I stood or was active. The CT scan came back with the following description:
Circumferential pleural thickening and enhancement is present.... Lobulated soft tissue is noted in a subphrenic location extending along the right lobe of the liver. Mild mass effect and scalloping of the adjacent liver parenchyma is noted. The soft tissue density measures up to 1.4 cm in diameter. Impression: Small right pleural effusion with pleural thickening and enhancement. Increased soft tissue density and scalloping along the right lobe of the liver suspicious for capsular disease.
So not the same description but as you can see... there can be thickening of the peritoneum as there is in my case.
Pat
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Thanks so much for your input Miss Sadie! Not a huge worrier, but the unknown drives me nuts! LOL Plus, the fact that there is so little information out there regarding anything to do with the peritoneum...i.e. what ELSE can cause thickening? The way I figure...I kicked it once, I can kick it again, if necessary!
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ARTEXASQT, my ILC BC spread to abdomen in 2014 and it has stayed there. Yes, I agree with retrocath: although peritoneal involvement is rare, it does happen. Thickening can also be inflammation. My MO treats mostly BC patients and I was the very first one he has ever seen that had belly mets only. Know that I did 2 endoscopies in early 2014 and my gastroenterologist kept saying the biopsies showed were inflammation and not cancer. In a desperate measure, I went to Mayo Clinic in MN in May 2014 and they diagnosed BC in the abdominal wall and duodenum. Mayo said it was very rare too! Personally, I think mine was slow growing and not caught as early as it should have been, given my symptoms. But I certainly had symptoms that the doctors ignored! Listen to your body and get an appt sooner if you have any symptoms, such as gut pain, excessive reflux/belching (which I had), or bloating. I'm on IV chemo now and my labs continue to look great, so no predictors there of things amiss. If you have ILC it's very sneaky. That's my 20/20 hindsight. Sorry - I don't mean to be pessimistic, but I would say be proactive in your care. We know our bodies better than anyone else. Good luck and keep us updated - we certainly care and will support you here, if you need us. 💕
By the way, I started my 23rd cycle of Halaven today and my TMs dropped into the 200's from last cycle - a 65 point drop. TMs haven't been this low since 2013 - right before I was diagnosed Stage IV. I'm really happy about this. I guess losing 50-60% of hair follicles, no eyebrows, and no eyelashes, along with other chemo side effects, are worth it right now. Sure not easy having cancer!
Hugs tonight for all, Sheri
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Oh Sheri, I remember losing my hair with Halaven too. At least we don't have to shave our legs so often! Just spent 2 days with an episode. Almost went to emergency this time. I unfortunately have one of the insurances (Anthem) that is making it harder to get emergency care. If they deem it wasn't an emergency, they won't pay the bill...and you don't always know if it's an emergency situation til you get there and get checked out. It took longer for this episode to work its self out. The gut pain yesterday was unbelievable. I finally took a pain med along with ibuprofen last evening and it helped remarkably. I lost 7 lbs with this episode. Helluva diet plan. I see the Doc in a week. Seems like these are coming closer together and getting more painful. I can handle almost anything but gut pain that makes you sit up and cry is getting to me. I can't imagine if these just keep getting closer together. On that happy note, I wish you all a great day. HUGS, Cathy
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Hi All,
Has anyone heard from Artist. She was having such a bad time... worried.
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