peritoneal carcinomatosis
Comments
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Linda so sorry to hear about your progression, praying for success for you with epirubicin. Taxol failed me in the same way too with progression to the liver and peritoneal mets, after 3 months - just wish there could be some logic and predictability to all this.
Hugs to everyone, enjoy the weekend x
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Linda, so sorry about your progression. That's terrible. It just takes one really good medication that works for you to knock it back again at least for awhile. Mine has been Navelbine. What a roller coaster ride we are all on. So glad we have each other!! LOVE and HUGS, Cathy
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I've not heard of this before. My Dr had not discussed this with me. I've only had one Doxil, and 2 stomach drains. I'm going to have to call him Monday and find out what his place is. I have been on ibrance and faslodex for s few months then my numbers doubled so he decided on chemo again but hasn't said anything about the distended stomach. Can this be knocked out with chemo?
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Livn - when I had a distended stomach it was due to a blockage. Couldn't even get down a sip of water. Ended up having to have my stomach pumped. I will pray that's not your case.
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I am really to just explode. I can't hardly move and I just sit and cry. I've tried many things too reduce this nothing helps. I'm Soo miserable
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Kimchee, If that is making the ascites better I would hang in there too, as least for another few weeks, as sometimes they go away for good.
Retro, Sorry you had a bad week....Hope this one is much better!
Linda, What a super disappointment. I hope the new meds are just the ticket. Don't despair, you know what a roller coaster ride this is. Downs followed by ups.....
Lin, You said you have had 2 stomach drains. How do you know you don't need it again? I had 6 before it finally cleared up with current meds. I would insist on an ultrasound.
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Lvin - I'm so very sorry you are having this issue. It sounds like you possibly may have ascites, since you have had your stomach drained twice. Your MO should discuss this with you immediately for diagnosis and treatment to help your symptoms.
I know several women on this forum have had procedures to drain the fluid just as you have, as they have said the fluid buildup is extremely uncomfortable. Some have also said their chemo has helped or even alleviated the fluid buildup. I can't help you from personal experience but wanted you to know that we are here to support you.
Please keep us updated - we care!
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Hello all! Had a terrible week last week--lots of abdominal pain and gurgling. My little yorkie, Spanky, also wasn't feeling well. She was diagnosed with giardia (the don't drink the water bacteria). Turns out raccoons carry it. Who knew? I called my Doc wondering if the gurgling I've been experiencing could be related to this bacteria. Tested on Monday and the test came back yesterday--NEGATIVE. I was so completely deflated. I guess a bacteria felt like a better choice than cancer. I had to completely quit the Xeloda. Seems to me the issue is taking medicine orally when you already have G.I. problems. It just exascerbates the issue. See my oncologist next week. Decide where to go from there. Terrible emotional week in the States....I've decided that as long as I am here I'm putting a little extra LOVE in my heart and try to spread it around. We could all use it. Love and hugs, Cathy
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Oh, Cathy! I wish Xeloda would have worked for you but I know your MO will have a good plan for you next week. Keep us in the loop.
It's tough to keep going from one treatment to another. Halaven is my 7th type of treatment since being diagnosed Stage IV Jan 2014. I just pray that they keep coming up with new drugs, as my options are getting limited. I miss being on Ibrance - that was the "easiest" for me and I felt the most normal. It didn't work very well though, so I guess it wasn't a good option after all!
I'm ready for fall. It's 86 degrees here and hot. I don't even try to wear my wig right now - I just get overheated.
Sending big hugs to all of you today!0 -
Cathy, I'm sorry too the Xeloda did not work out. As southern has said we just keep praying for new options.....
I hate the wig thing too Southern. I have my daughters wedding next weekend in Southern Cal and just know by the end of the day I will be so over it...the wig that is, not the wedding.
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Well, I got okayed for the Sandostatin--it's supposed to cut down on the amount of fluid my small intestine is making--hence all the gurgling. In the G.I. doctor's notes she says she could do a special small bowel test to prove cancer but as she's already positive this is caused by the cancer, no test is necessary. So not from the Xeloda but cancer. I do think that Xeloda was making my intestinal system even more messed up. I will have to give myself shots in the abdomen 3 times a day. I will keep you all posted. See oncologist on Friday. I do feel like I'm on some kind of downhill slope...I'm not ready. The days I don't have intestinal and stomach issues, I feel pretty good--just weaker than I used to be. Just bought a stepper that also swivels a bit. I noticed I'm losing muscle in my calves. Bought some hand weights too to help with my lack of muscle tone in my arms. I'm hanging in there. HUGS, Cathy
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The fluid in my stomach is awful. It's so full. I can hardly eat or drink anything. Dr wants to wait to see if new chemo will help. First cmf treatment was Thursday and so far no help at all. I just can't stand it. Anyone have home remedies they've tried?
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Lvin - the first chemo I ever did was CMF and by far the easiest. I worked full time while I was on it. I was one of the rare ones and lost my hair. Sorry I can't help you with your tummy issue. Are they sure you don't have a blockage somewhere?
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Lvin, did you have a recent ultrasound? Sounds like you need one. Keep us posted. HUGS, Cathy
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hi everyone,
Reading your posts, I pray each one of you deeply.
My belly did shrunk after the 2-step draining of 4,5 liters fluid the past two weeks. Yet, it’s building up again
will switch to Nexium hoping it helps. Been on Taxol this past month with still Xeloda (6 years) and TMs dropping. But my body does not feel better.
Loss of appetite, due to bloated stomach
Loss of energy with extreme neuropathy
Feeling more depressed
Gasping for breath through the day
Sort of waiting the next monster SE
Shall I continue?
I really hope to have my belly shrink to normal soon.
Lvn, please do ask for the ultrasound and have that parasynthesis done soon.
Hope we all get better soon.
Hugs
Ebru
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My latest scan/US show a beginning of ascites. Scares the living hell out of me. TMs keep creeping up and up. Sick and tired of being tired. Rant over.
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I'm so sorry so many of us are going through a bad patch right now. It's amazing to me how similar our symptoms can be but while one treatment works for one person, it might not work for another. It's hard to walk that fine line between knowing this disease is not curable and staying positive. I tell myself that this may kill me one day....BUT NOT TODAY!! I have such a hard time getting going in the morning. Thank goodness for cute pajamas and great leisure wear. Sometimes I'm wearing them all day. Hope everyone's week gets better. Love and hugs, Cathy
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So I went to ER last night. Ultrasound showed small pocket of fluid they could access but most is between bowel. Ugh. My Dr came in later and approved a tap then said most of what is in the middle of my tummy is gas. So I can drink a soda because of the carbonation. When I get nausea and dry heave I belch and it makes my stomach feel better. Getting tap done today, no personal tap due to low WBC.
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Hi it's me again Kimchee. Ibrance quit working for me so now I'm on Afinitor and Aromasin . Don't know what to expect , so if there is anyone out there that can tell me and how are things going ? Thank you and God Bless
By the way I'm freaking out and depressed Thanks again
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Hope you are doing better Lvin...It's miserable when you have to go to the E.R. Kimchee, so sorry about Ibrance not working any longer. I'm the wrong person to ask about Afinitor because I only lasted about 3 weeks on it... Terrible abdominal pain. I don't always do as well as others on medications. I seem to have a low tolerance. Hopefully you will do really well on this new combo. Hang on to all the positives in your life. They will help you get through. Love and Hugs, Cathy
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Lvin, I am glad you finally went to the ER and got SOME relief anyway. I still get bloated but know it is mostly gas as it is always better in the morning then starts to bloat as the day goes on and I eat. Sometimes it is so uncomfortable it is hard to walk around or stand for long periods. After some meals especially after dinner I usually have to go recline.
retro, I hope the new med works wonders. Giving yourself injections does not sound pleasant but anything for relief right? I think we all have days we feel we are on a downward slide......It's that damn roller coaster effect. Hang in there and work those muscles and I will try and do the same. (In my PJ's even)
Ebru, I hate to hear you are so down as you have ben such a cheerleader for us all. Being bloated is just a misery. Then add neuropathy on top of that and it's just so depressing. I know as I have both. Please continue the Taxol at least a bit longer and give it a chance to work on your symptoms. Saying special prayers for you today.
Linda, Sorry to hear of this new development.......I got it pretty severely for about 6-7 weeks and Abraxane knocked it down. Haven't had a paracentesis in about 6 weeks. Don't despair, there are ladies here who have kicked that particular malady or at least have it under control. You can rant for all of us tired people!
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Hello All! Saw my oncologist yesterday after a very enlightening week. Was finally off the xeloda long enough that all my abdominal symptoms stopped (well mostly stopped). No gurgling just some bloating. So I don't have to do the shots in my gut since it appears all those symptoms were due to the Xeloda. Kimchee, it looks like I'm going back on Afinitor as that is what my tumor genetic testing showed would work the best for my cancer. I argued with my Doc about it because I got ulcers in my mouth, esophagus, and stomach when I took it last. He is starting me out on a lower dose. If that doesn't work taking it orally, there is something similar given either as a shot or I.V. that could work. It's used for kidney cancer but he can't ask the insurance company to cover it until he shows I can't take it orally. I also agreed to try it again because my tumor markers suddenly shot up 160 points. I have now had a few days where I feel pretty good. Even cleaned my bathroom this morning (it's a party!). I talked to some of the nurses yesterday while I got my flu and Xgeva shots. They were very helpful and empathetic. Sometimes you just need the extra LOVE!! Hope everyone has a great weekend. Love and hugs, Cathy
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By the way, my usual abdominal symptoms slowly changed over the last 8 weeks to something that was different from the abdominal pain I used to get. The only thing my Doc and I can figure out is that the Navelbine must have worked for me but since I went into the side effects with the Xeloda, we couldn't tell. So I guess not only did I get terrible pain from the xeloda, it also didn't keep the cancer in check. Cathy
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Good morning. I guess I was hoping for the best but it was not to be. Had abdominal pain yesterday with vomiting. Feel better this morning. Some gurgling but not as much....we'll see. I realize one of the ways I handle having stage IV cancer is that after an episode or some terrible side effect, once I'm through it, I forget about it. I can recall it to tell my Doc but I let the rest of it go. Maybe not always smart as it gives me false expectations. Oh well, I guess a little amnesia when dealing with this can't hurt. Have a great week. HUGS, Cathy
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Well on Afinitor so far is good ,tomorrow will be a week on it . The only side effect is I get very tired in the afternoon. Going to start walking in afternoon to combat that . I hope all is well with everyone on here and I pray for us all for a cure . God Bless
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Kimchee, so glad Afinitor is working for you.... HUGS, Cathy
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Hi all - wanted to check in with everyone. It seems like ascites is a problem for several - I wish there was an easier way to clear that up besides doing a procedure. These stomach mets just cause all kinds of issues - very frustrating!
Tomorrow I start my 5th cycle of Halaven, so 9th infusion. Worst part at the moment is my hair loss, including most of my eyelashes and eyebrows. I look sickly now if I don't wear my wig. I'm praying my tumor markers decline this time. Also, watching for neuropathy. Sometimes I think I may be getting it in my legs - the front of my calves feel numb but no tingling.
Cathy and Arist, can you tell me your experience with neuropathy? How/where did it start for you and what exactly did you feel? That is definitely a big concern for me.
Kimchee - I have not been on Afinitor so I can't provide any input on that. Glad it is going well for you this first week.
Cathy - amnesia isn't so bad. I think I have that too. It's probably a defense mechanism for us with mets - helps us to keep hanging in there with all that we have to deal with. Sorry your stomach is acting up again. Seems every day is different, isn't it? Hoping you can start your Afinitor soon.
How is everyone feeling today? Praying for all of us.
💕💕💕
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Hey Sheri, I first noticed neuropathy in my toes and then my feet. It then moved up my legs especially up my shins and then later clear up my thighs. I was and still am pretty klutzy. I'm pretty sure what you're feeling in your legs is neuropathy. It gets a little worse with every treatment. Mine went away pretty much a month after I stopped Halaven but it has never completely gone away in my toes. Good luck. HUGS, Cathy
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Thanks, Cathy - yes, my shins feel a bit numb. Feet are fine so far. I will watch this next cycle.
Doing 9th infusion right now. Saw MO and TMs declined 94 points to 500. Have had a 63% decrease in TMs since I started Halaven almost 3 months ago. This is really the best results I've seen on a treatment since Stage IV diagnosis. Now just have to see if the side effects don't do me in!
Hope everyone has a pain-free day! ❤️0 -
I just talked myself into doing daily sit ups to see what happens , I'll let you all know . Tired of feeling this way God Bless and I pray everyday for a cure
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