peritoneal carcinomatosis
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hi everyone, New here although not new to reading this board, I have learnt so much from people here. I was diagnosed stage iv earlier this year after a few trips to the ER for severe abdominal pain and throwing up. Eventually found my breast cancer had spread to the peritoneum on the outside of my colon causing it to narrow. Also spread to the liver, bones and nodes. I just finished up 12 weeks of taxol, scan done and I have progression. I was so down, my first chemo for stage iv and it did nothing. And I haf such high hopes of taxol. Is this how it's going to be? Meeting with my onc on Wednesday to get the next plan.
Dianarose I really sympathise with those symptoms, I had exactly the same before diagnosis due to being totally blocked in my colon. The diarrhoea was down to overflow poop working its way round the blockage. Are you sure you're not badly constipated? Am having milder but similar as I have a stent in my colon which I have managed to block, it is horrible. Hope you feel better soon.
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Blume,
We just wanted to reach out to welcome you to Breastcancer.org. We hate that you have to be here, but are really happy you've found us and that you've posted. You're sure to find a wealth of support, advice, and information here.
We look forward to hearing more from you soon!
--The Mods
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Dianarose, My heart is hurting for you so much right now. This one particular complication is just hell. Saying a prayer for you today and hoping your Dr's find some relief for you soon. Hang in there....
Welcome Blume, I hope we can all learn a lot from each other to make this life somewhat easier...
Cathy, I hope I make it a complete week with no flare too as my daughters engagement party is at our house on Saturday. It was planned so long ago and I so want to be the gracious hostess, but I still feel so depleted and crummy, I'm trying to crawl back. I am scared to have another procedure before then and go straight back downhill.....
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Yes - welcome to you, Blume. You are in the right place and we are glad you found us here. We support each other well and definitely empathize with each other.
Dianarose - thinking of you today and praying for the doctors to find something to help you NOW!
Artist - pray for you to start feeling better pronto before your big event on Saturday. I know you so want to feel well for this occasion.
Cathy - hope the flare-free time is continuing for you.
I was in a funk today as I'm just so down about going back to chemo. I don't feel well after my 1st Halaven infusion last Thursday and I have this terrible metallic taste in my mouth that won't go away. Same metallic taste I get on every IV chemo! I was on the couch all weekend and this QOL truly sucks. Just so disappointed to go back to not be able to live "normally."
Thanks all for listening to my rant!!0 -
Awww thinking of you Southern, rant away......I have a pretty hard time getting food down lately and your taste buds being off makes it way worse. QOL does indeed suck when all you can do is lay around and just get more tired. You feel exactly like I do right now so I sympathize completely ....
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Sorry guys. Chemo is awfully hard. I become quite a couch potato myself when on chemo. It's been so bad sometimes that it is a huge accomplishment just to shower. Hope you have a tv show or movie that makes you happy. Anyone seen "The Ghost and Mr. Chicken" lately? The movie is 50 years old and my daughter and I just laugh our way through it. Hope you can find something that makes you smile!! Good night!! Cathy
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many thanks for the welcome everyone, I hope you are all feeling better today.
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This upcoming webinar is focused on Gastric (Stomach) cancer, but it may have relevance for those dealing with GI mets, particularly Peritoneal mets and Ascites (abnormal accumulation of fluid in the peritoneal cavity).
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Hi ladies, I have been absent from the board for a while....trying to pretend life is normal, lol! It's not though, and I could really use some opinions.
I was diagnosed 5 years ago with MBC, I had bad stomach cramps and ended up in the ER. Chemo and tamoxifen plus a picc line with daily nutrition (TPN) finally got the cancer under control and I haven't had many symptoms until recently. I have run through most antihomonals....Fermara, A/A, Ibrance and Faslodex.. I am on my second month of Kisqually (supposedly very similar to Ibrance) but I am afraid it's not working. I've started having stomach cramps and diarrhea. I had hoped I just picked up a virus because I have been so dizzy, fatigued and my stomach hurts. But the onset of diarrhea scares me, I had it when I was originally diagnosed and it was awful. It was uncontrollable and I lost 25 lbs. Not to mention it's terribly embarrassing and you never know when it will strike. I have a DR apt today and just don't know what to do. He had mentioned going back to IV chemo, or Xeloda which I haven't tried.
My question is which chemo seems to be the most effective with peritoneal mets? My original biopsy came back "mixed" so I don't just have ILC or whatever most peritoneal mets are. Gemzar didn't seem to work when I tried it years ago, it was the tamoxifen that really helped. And I don't think my Dr has had many BC patients presenting in this way, I was told I was a highly unusual case. (Not really what a BC patient wants to hear!) So I am looking for some experience or direction since my Dr seems to like to present me with options and then decide for myself
Thanks in advance. I have all 5 of my children home for the summer. Two are in college, three still at home. I am trying my best to have a great summer and keep up with the appearance of a normal life but I am starting to get panicky with the onset of this crappy diarrhea! Pun not really intended but it's appropriate!
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Hi Starbright, Don't know if this will help but I am ILC with liver mets and recently peritoneal which is causing ascites which is very uncomfortable and sometimes painful bloating in my abdomen. I have been through most of the AA's and since the development of the ascites my Onc suggest we try Abraxane, a bigger gun to put out the fire he says. While I am not anxious to go to IV chemo it sounded like a solid plan for me and I really hope it knocks out the ascites issue. I have read of some women here for whom it completely disappeared after chemo. His plan then is to possibly revisit an easier regimen once we get it controlled. The biggest side effects are nausea, fatigue maybe some neuropathy and hair loss. No mention of diarrhea problems!
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Dianarose how are you doing? Did you get any resolution to your symptoms?
Starbright Xeloda works for a lot of ppl, Onco offered chemo a few month to DD, but we kinda said no, because we knew what's going to be like, but I must say I am wondering now, maybe we should have been more aggressive, this monster moves so fast. Now she is in a clinical trial, and trial Onco said, in private she'd maybe attack the liver in a different way but in the trial we gotta wait it out.
One of the new things that appeared in the PET/CT is a parcolic gutter nodule. Ever hear of this? They noticed it in the last scan, but was tiny, and it grew! i looked it up and it says it's near the colon. Now, that is scary. The rest of the scan is few did not grow, so believe it or not, Onco trial is banking on these, I am thrilled that they didn't kick her out of the trial, but there is so much more otherwise, I'll look the other way for the next few weeks.
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Hi Starbright! Navelbine is the one chemo that has really worked for me. I'm finishing up my 2nd course and hope to switch to Xeloda soon I hope you can get your symptoms under control. This is not fun day in and day out. A few good days here and there help keep me hopeful. HUGS, Cathy
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momallthetime- they thought I had c diff but that was negative. They did have me on the wrong antibiotic for a few weeks which would explain why my kidney infection was not going away. Now on the right one. I did get some IV fluids and nausea medication plus potassium and magnesium. It's been a long 3 weeks. Go to the cancer center this afternoon. They have been hinting about putting me back on a yucky chemo for awhile. Just want to go back on Ibrance.
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Dianarose I know I know.... hugs let's see what they see, maybe a new sono?
Did you see what I wrote about parcolic gutter nodule, did u guys ever come across this? It's close to the colon so it's really upsetting.
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Thanks ladies, My Dr wants me to try Kisquali/Faslodex for at least one more cycle if I can handle it. He thinks the diarrhea, dizziness ets. are all med related and I will be finishing my week off, plus he wants me to wait another 48 hours. My markers of course, rose. its way to early to tell. He doesn't seem too hopeful since Ibrance is related to Kisquali and I only got a few months out of it.
So the next thing would be a trial ( if I can find a good fit, so far they haven't found any) or 12 weeks of Abraxane and then moving to Xeloda for as long as it works. I am encourage by hearing Halaven has worked for some people. so I feel like I',m not quite as "stuck".
Thank you everyone,
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Welcome, Starbright - thanks for joining us here. We always welcome new "faces" and experiences. I wish there was one chemo that was the best for peritoneal mets. I've been through so many - Faslodex, Abraxane, Gemzar and Carboplatin, Xeloda, Ibrance & Letrozole, Ibrance & Faslodex, and now Halaven. Haven't found the magic one yet but still kicking and screaming!
Halaven hasn't been so great side-effects-wise. I have been through 2 infusions so far and the constant metallic taste in my mouth is making me so miserable! Also have the big D. It seems like Days 3 & 4 are the worst days for me. Today is Day 5 and I started feeling better. Fortunately this next week is my "off" week - I'm ready for it!
I want to ask you all to fervently pray for Dianarose. She was in the ER this weekend and then went back to the hospital again today. She is having kidney issues with the latest tube and has been in a lot of pain. I haven't heard from her since earlier today but I'm praying that her doctors figured out the issue and are now managing her pain! She has been suffering too much.
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Praying for you Dianarose! Hoping they figure out how to ease your pain and eradicate the issues that are causing it.
Started Abraxane today and pray it chases the ascites away. I hate the paracentesis procedure so much. At least I had some appetite return so my energy is getting better.....
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Artist, how was your daughter's engagement party? Were you feeling OK? You are a real trooper as that to me would be tough to pull off if I felt 100%! Throwing a party is not in my comfort zone! Hope the Abaxane works for you.
Dianarose isnow at home and I hope resting. Says her whole body aches. Continue the prayers, gals!
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Dianarose you deserve a break girl! Prayers and the best wishes for you to feel better right away
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Thanks for all your kind words and prayers. Today I managed to eat a little cream of wheat and soup and crackers. It's a start. A lot of spine pain today. Nasty mets!! Bone scan on 25th to see if there are more 😓
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So glad to hear! Take it easy. What happened that caused all this?
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I would guess I have some progression in my belly . That would explain the need for s naphostomy on the left side too. Told hubby I think I am getting closer to the end. Just don't want to suffer so much . I am quite sad but I never feel good anymore and can't even clean my own house. Never thought this would be me at 56. Used to be so active now going to the mailbox makes me winded.
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Hugs, DR! Praying that these crappy tubes are a temporary setback. I hate all this suffering - you are definitely at the top of my prayer list tonight. 💕
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Did they really exhaust e/t that they could treat you with? The whole thing is such a bowl of shenanigans, if it wouldn't be so sad, i'd be rolling laughing. Why can't they do the scans earlier? If you are feeling so bad, maybe they could do it sooner, maybe they could change something. This procedure is a tough one. It will take some getting used to it. Feel better soon.Hugs and more Hugs.
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Ah Dianarose! I just keep hoping that something will click and you will start feeling better. What a journey you have been on with this cancer. I only hope I can handle this half as well as you have. Do what you have to to be comfortable. Sending you lOVE and HUGS! Cathy
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OMG!! I had heartburn and the runs and stomach and gas pain most of the last week. Saw my P.A. yesterday and she ordered a CT scan for me. No bowel blockage showed up but the barium you drink caused all kinds of gastric distress plus the runs.... I haven't heard yet if anything else showed up on the scan. Nothing usually does!!! Sometimes I think I'm going crazy!! I have been approved by my Doc for the Xeloda. Just waiting for the insurance company, as usual. I go home for a visit in a little over a week. Hope I can handle the trip. I'm going to see sisters and brothers. 6 of us left out of 9. I'm the youngest. I don't always feel good enough to respond all the time. But I try to read every day and my heart just goes out to each and every one of you. I fired one Doc who wouldn't listen to me or my gastroenterologist about my abdominal pain being cancer and found my current Doc of almost 3 years who pays attention to my symptoms and doesn't wait to prove progression. He changes my treatments as needed. I can always go back and try something again at a later date. I hear so much from you about nonresponsive doctors. That's why my sister-in-law, Jean, died.-- Waiting by her docs to prove progression until it was too late and she ran out of time. Stand up for yourselves. You know your bodies more than anyone else--what is normal and what isn't. I always tell my doctors that I want to know everything. I do better when I have something to research, something to read about. I hate the unknown and being blind-sided. I also know what questions to ask by researching. I don't know where this rant came from but there you are!!! LOL Wishing you all a wonderful pain-free day!! Cathy
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Cathy - 100% agree that we know our bodies best. Rant away! Some of these doctors make me so mad! Glad you have found a good one that listens.
FYI - I think you will find Xeloda more tolerable than the IV chemos - at least I did. Got 14-15 months out of it. Hope insurance approves it soon for you.
Hugs, Sheri
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Dianarose, I a so glad you are home now and able to eat a little. I think none of us imagined this would be our life at any point and it is so hard to not be our old selves whether it's cleaning the house or any other ordinary things we probably took for granted "back when". It is sooooo hard. I do keep praying that something comes along for you and has you feeling better very soon.
Southern I BARELY made it through the party. Luckily mine and the kids friends were so wonderful in cooking, cleaning and getting it all set up. I was a master delegator! And then they cleaned up everything afterwards. It was a wonderful time for all, even me who basically sat in a chair for most of it. I was just so happy for my daughter.
Hey good rant Cathy. I feel if my Onc had caught this way sooner I would of never lost so much weight and hence energy. I still am not up to speed here and am forcing down any food that sounds halfway palatable. Tomorrow another dreaded para then Friday get the port. Got my first Abraxane Monday and I've been wiped out ever since. I just pray to got it gets rid of the belly mets.
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Cathy I feel you I feel you. I feel it in my bones that docs are always holding back. They only give you so much info, i think it's a power thing, they wanna have control. Really. When you read books that doctors write if they are diagnosed with any serious disease you'll see they don't walk the talk, you know.
Shetland thanks, yes PET/CT is the thing, but we gotta tip toe so Dani gave in today, and we agreed this turn at the end of the month she will have CT as p/trial rules and if all is well the next time they will do the PET/CT. I did a lot of research, and Anita asked her hubby, (he is a professional specialized in CT's), it comes down to PET/CT being able to see very small lesions, and active ones, and CT is more to follow tumor size. But the truth is I watched a Youtube clip, and a CT was not accurate in showing the size of where the tumor is holding, whereas PET/CT was able to detect that the lesion got smaller. I believe it's more costly and that's that, that is the reason they shirk away from it. Period. Pray and pray.
Artist so happy you enjoyed the party, and that's what good friends are for. I am sure they felt good that they were giving a helping hand. Congrats!!! When is the wedding? Best wishes with Abraxane.
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Hello ladies,
Joining this thread. I just found out today I have peritoneal carcinomatosis (pc) around/near segment IV of the liver. No ascites yet. I've had a lot of progression in 2017 and was put on Taxol in May for extensive liver mets. Next step is biopsy of liver or pc I'm not sure. MO mentioned perhaps switching me to Epirubicin (Ellence) chemo but she still wants to think about it and consult with colleagues and that of course may change when we get biopsy results. Never heard of that chemo before today. I've been having abdominal pain radiating to my back and episodes of nausea and vomiting that can last several days even with several anti-nausea meds. At first we thought the n/v were SEs of the Taxol and rads I had to neck and head in June, but now MO believes it's all cancer related.
Some of you I've "met" on other threads and others I will meet here. I wish you all the best and hope to learn from you as this is the best place for that!
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