peritoneal carcinomatosis
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Cathy, I’m so sorry this latest episode was so bad! Are you tracking these? It does seem they are getting more frequent and I worry about you and what’s happening, and what’s directly causing these. Oh, this disease is such a struggle! I pray for some better days ahead.
Sadie, I’m also worried about Artist. She hasn’t logged on in a week and she was having a terrible time in her latest post.
Dianarose, thank you for posting about your friend Cindy, may she Rest In Peace. Too many leaving us too soon. It’s hard not to wrestle with the mental aspect. We are happy to hear Xeloda is working for you - keep us updated here.
Praying for a good, pain-free day and weekend for us all.
💕💕
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Hi Sheri! About 6 months ago when I was having so much trouble I started a journal logging in episodes, duration and how bad each one is. My Doc loves that I bring it in. I also put into it all the questions I want to ask him so I don't go in and promptly forget! I THINK IT WOULD BE GOOD IF AS MANY OF YOU AS POSSIBLE COULD CHECK IN! YOU ARE ALL IMPORTANT! Love and hugs, Cathy
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Artists profile says last seen March 14. I think thats good, yes?
I'm here living life. So far so good with Gem/Cisplatin. Next scan Apr unless something comes up. Actually discussed maintenance if the next scan is as good or better than the last.
Not sure what it will entail, but I'd like to be there to give it a try!
Spring is almost here, hang in there everyone.
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Missing Stephanie tonight. Don't know why but she's been on my mind. Can't believe it's been over a year since she left. I know we aren't hearing from a lot of people who used to post. Hope you are still with us loving life. Cathy
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Cathy - I too miss several women that used to post a lot here a little more than a year ago and are now gone: Longtermsurvivor (Stephanie), Hummingbird, Rosevalley - just to name a few. This is one of the few places I come for support from people who understand.
Milwmama - glad to hear you are doing well! Thanks for sharing and checking in.
Praying for Artist and all those who are struggling with this crappy cancer right now.
💕 Sheri
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Well I am back at the guessing game. Have been having stomach pain, actually lower abdomen, for about a week and a half or two. No idea what it is but its uncomfortable. Feels like I have to poop or pee. Also feels like my ovaries hurt, but I don't have any
It is strange. No problems with any "evacuations", just feels somewhat painful 
Have an appt for the onc and chemo Thursday and will be asking for a PET scan sooner than later. I am due end of April anyway. Also going to go to regular doc for a pap amd whatever else to rule out a "regular" problem instead of cancer problem. It's strange that I'm actually hoping for a kidney infection or something like that.
Sure hope it's not spreading, just had great results in January.
Oh well, such is the life of Mets.
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milwmama- I too get pain like ovary pains and I don’t have ovaries either. I think it could be scar tissue. At least that’s what I tell myself
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Milwmama, Hope you get your scans right away. I know what Dianarose is talking about. I get pulling sensations from where my gallbladder used to be. I massage and try to stretch out as much as possible. I'm pretty sure it's scar tissue. Today is the 1st day in 4 I actually felt hunger. I'm also not losing weight. What's up with that? I hope you get your symptoms figured out soon. I can only imagine how uncomfortable you must be feeling. HUGS! Cathy
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Milwmama, Cathy, Dianarose, and others who might be dealing with scar tissue pain on top of everything else, I do have a suggestion that could be helpful for that. I use heated castor oil packs to my abdomen every morning for 30-60 minutes. I've made it kind of a ritual that is soothing and hopefully working to cut down on scar tissue. I wake up, pee, turn the heating pad on, make my morning juice cocktail, apply fresh castor oil to my belly, and sit with the heating pad over flannel cloths on my abdomen. I learned about the castor oil packs to break up/prevent scar tissue after my mastectomies almost 21 years ago. It really helped my range of motion and pain. Best wishes to every one of you. May you have a bit of joy in your life today. Love, Orina
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Hello All! I saw the Doc today. I told my episodes to quit playing chicken and come out when I was seeing the Doctor, and they did. Pain started about 2 hours before I saw him. It was not exactly a happy appointment. My tumor markers are up. My anemia has gotten bad enough that I'm getting iron through an I.V. 2 sessions starting next week. My stomach sounded like an overfilled drum when he tapped on it. Probably ascites building again. He is upping my medication and when that fails, I will go back on Navelbine probably. He told me I have already lived longer than most people with this type of cancer and that I shouldn't give up because he won't. I was diagnosed with this over 3 years ago but probably had the peritoneal spread long before it was diagnosed. My cancer is pretty slow growing (or at least used to be) so I probably had it when I was diagnosed stage IV in 2012. And I know I told you that another oncologist thinks I was stage IV from the 1st back in 2002 I asked him if the episodes I'm experiencing are what is going to kill me and he said, "Yes." He upped my pain meds, gave me a new RX for a drug to help with the cramps. I can't imagine having this kind of pain most of the time. Anyway, I'm not sad. I would have been more upset if he had tried to tell me everything was fine and just sent me home. I know he listens to me which makes a huge difference. Onward and upward. I'm going to enjoy every good moment I have to spend with my family. I would still like to make it to the next election, and presidential if I can. I want to leave my grandkids with a better world. LOVE and HUGS, Cathy
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Cathy, I’m glad too that your “episode” showed up when you saw your MO. I think it helps them see exactly what you have been describing has been happening to you. I’m sorry to hear it wasn’t a great appointment although I’m happy your MO hasn’t given up. He seems so honest yet caring, which is exactly what we all want.
How long have you been on Afinitor now? Is there a reason why he took you off of Navelbine when it was working previously? I always like to get the insight of others and what their thoughts are behind their decisions. I also like to keep an eye out for what my next med will be. Navelbine seems to have been a good, effective drug for you in the past.
What is causing your anemia? I don’t remember that this was an issue before but please forgive me if you have told us this. My memory is certainly not my strong suit these days.
You are very strong and keep a good attitude throughout, which I think helps you enjoy your time and make the best of it while we are here. It’s no picnic, for sure.
I wish you a pain-free weekend with enjoyable family moments.
Take care, Cathy - I’m rooting for you and you remain in my prayers.
💕💕💕
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Hi Sheri! Good morning! I've been on half dose Afinitor since the end of October. He's upping me to 7.5. I had some problems with toxicity on Navelbine last time. I was supposed to be 2 wks on and 1 week off but frequently got the infusions every other week. It still worked though so hoping I can tolerate it better next time. I have been anemic since 2003. I would say the last 5 years it has gotten worse. At times I have been just borderline to getting a transfusion. Back in 2003 they even did a colonoscopy to try to find out why I was anemic. Precursor to peritoneal involvement? Maybe. I've been fighting cancer for 15 yrs now so I try to remind myself how lucky I have actually been. This group, and you Sheri, have been so wonderful. I can't begin to tell you how much you have helped me through the dark days. Guess I need a nap. Woke up to early. LOVE and HUGS, Cathy
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Thanks, Cathy - love that we can share on this belly mets thread as there are not many of us. I guess I’ve been fighting for almost 11 years now since first diagnosis but the last 4 with MBC have been the worst!
I’m so worried about Artist. I’ve looked on a few other threads and no one has been in touch with her. I guess if I fell too ill I would be in the same boat as my husband doesn’t know the details of my user name and PW. He knows about this is where I go for support but that’s it. I will give him the info when I get to that point as I would want y’all to know. For now, I feel like you all are my sanctuary where I can rant and complain with no judgement.
Take care of yourselves
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Ya, I get concerned when not many people post, as well. I will make sure my daughter knows to contact you all. Hopefully I will be able to post til the end. I'm feeling a bit better right now. 1st iron infusion on Thursday. Hope everyone is doing ok. Sometimes that's all we've got! HUGS and LOVE, Cathy
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Hello all. I was on Ibrance/femara for 22 months and followed that thread for over a year. This is my first time posting and I am so glad I found you. We just found progression in the form of peritoneal carcinomatosis. It seems this is less treatable than some other progressions and I am starting to panic. In two weeks I go on exemestane plus Entinostat/placebo trial. I just wanted to thank you all for your posts and appreciate any suggestions you have.0
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Hello Nap and welcome! Don't panic!! Many of us go for a very long time without a lot of issues. By the time I was diagnosed I already had major issues but my treatment (Navelbine) beat it back and I have had times when I was doing very well. I have issues right now but I'm not giving up. Stay strong. Make memories with your family. Go do something you have always wanted to do. Wrapping you in a big hug, Cathy
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Hello ladies, hope everybody is doing relatively well. My mom has several episoded with headache therefore MO sent her to brain CT. It was clean !Thanks God!! But last two weeks she has pain in her right side of abdomen, she was in hospital for 3 days but nothing unusal found. Only small volume of ascites but nothing dramatic. So we are waiting for another appointment with MO till next Tuesday and will discuss options. Maybe Faslodex has stopped working and is time to move. Maybe something wrong with bowels, who knows. It is really bad disease as it isnt shown in any scan. One option is laparoscopy but we are scared. Better not to "give an air and life" to the cancer cells. Let her stable as much as possible. She celebrated 3 years with carcinomatosis in March. Thanks for everyday and hope for another 3 at least
we do not give it up yet !! Take care !0 -
Retrocath, thank you for your support. It means so much to “talk” to others who know. When I first had recurrence 2 yrs ago, my onc told me about many layers of successful treatments. Now after my first line failure of Ibrance/letrozole, there is only this one option of Exemestane then we go to IV chemo. What the heck happened to all the new options being released! I definitely have plans for this year! Fingers crossed they will happen. Thanks, K0
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Hi Mirka80 and Nap -
Mirka80 - praying for your Mom’s doctor to determine a good treatment plan. There are a lot of options, so keep that in mind.
Nap - yes, welcome! Sounds like you had a good run on Ibrance. You have a lot of treatments in your arsenal. I’ve had belly mets for 4 years now and doing OK right now. I wasn’t diagnosed with this for several months, which caused me huge issues in the beginning, so I’m happy that your MO is on top of this. Keep us updated - we are here to help in any way that we can. Glad you are making plans - no reason not to!
Sending y’all big hugs today!
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Southernsurvivor, sounds like you had a rough start but I am encouraged by the improvement. Thanks. Have a great week
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Hello everyone!! I had an iron i.v. infusion this morning. So far so good. Have another one next week. Met a wonderful lady who's been fighting cancer for 11 years now. I'm at 15. She said I was the 1st person she met who had been fighting it longer. I believe I met an older lady 3 years ago who at that point had been at it for over 20. Amazing what we are able to deal with and get up each morning and start all over again. LOVE and HUGS to you all. CATHY P.S. By the way, the medication I got to help with spasms in my gut is really working. I have yet to have another full-blown attack. Tuesday I took over an 19 hour period 3 pills. I get mild warnings but it never has a chance to get that far. My Doc ordered a liquid medication but the pharmacy I go to didn't have it and my insurance wouldn't cover it. The pharmacist called the on-call doctor and got an ok to dispense the pills I ended up with. She could tell I was in pain and didn't want to send me off with nothing. Anyway, it works!! For any of you with similar problems, this medication is called Phenohytro. She didn't put the milligrams. It has phenobarbital in it so I guess it can become habit forming. I DON'T CARE!! Also phenobarbital the next day knocks me on my butt. I play "charades" when I talk. You know, sounds like, as I'm looking for the word. Keeping my sense of humor.
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I posted this to the Liver Mets thread, but I know that Artist was an active poster here, too. I received a PM from Artistatheart's daughter today. I am very sad to say that Artist passed away on March 19 from liver and kidney failure. She was surrounded by her family, and she went peacefully. She will be missed.
Hugs and prayers from, Lynne
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Oh Lynne. Thank you for letting us know. I still feel relatively new to BCO so don't yet have the strong relationships that many have but have quickly grown to love so many of the women here. I have been quite worried about her situation as I know she was struggling. My heart goes out to the her family. She will indeed be missed.
It's been a hard couple of months on this forum. So many losses....
Pat
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Oh Artist, we will so miss you. You brought so much wisdom to this forum. I've been wondering why she wasn't posting I was so hoping for another reason. We have to keep on going for each other. HUGS EVERYONE! Cathy
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Lynne, thank you so much for letting us know. I’m so, so sad to hear this.
Yes, we loved Artist here. Such a bright, caring woman with a great sense of humor. I feel like I really knew her and I can’t believe another friend and sister lost. It’s truly getting to be too much. RIP Artist and prayers for God’s comfort for her family during these extremely difficult days.
💕💕💕
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Hi All. I wondered if anyone has any experience with urinary tract effects from tumors? Last week I had bilateral nephroureteral tubes placed because the tumors were crushing my ureters. I’m not sure how common this is. I am so sorry to read about Artist. Altho I am new to posting, I find a familiarity of indivual names and their journey from following for a long time. Many strong bonds are made here. Hoping for a good day to all despite the very sad new. Best, K
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Wow Nap! That sounds like a miserable experience. I hope the surgery helps the bladder issue. Even with everything we are experiencing, bladder infections are just the worst!! It's so sad when one of us loses our battle. It's a definite reminder that what we are going through isn't curable. So glad we have each other!! Hope you can have a nice relaxing weekend. HUGS, Cathy
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Retrocath, I didn’t even know! It showed up in blood work (creatinine) as the beginning of kidney failure, no uti or anything. If the new meds beat back the tumors, they may be able to remove them eventually. I have some fun trips planned and I am trying to figure out how to handle bandage changes b/c my precious DH will not be with me and I can’t reach to do it myself. I am determined to keep chasing joy for as long possible!
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Nap- I sent you a private message
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I too was hoping a different reason for Artist not showing up. So sad to lose another one
I go for a PET tomorrow that was finally moved up after seeing my Dr and not his PA. My stomaxh has been bothering me for about a month now getting progressively worse. Tomorrow I hope to get answers one way or another
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