peritoneal carcinomatosis
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Cathy, how did your doc appointments go today? Infusion #12 of Halaven for me this week. It's not terrible but I'm tired of IV chemo. Just plain ol' tired!
Hope everyone is doing well and ready for the weekend. I'm going to a wedding tomorrow morning at 10:30am, so no sleeping in for me. I'm going to try to draw on eyebrows after picking eyebrow pencils and powder yesterday. I just look so sickly with no eyebrows.
Hugs to all!
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Hey Sheri, Hope you are having a great time at the wedding. Nice to get dressed up once in awhile. Well I learned yesterday that my tumor markers continue to go up and that I am taking the Afinitor wrong. My insurance company wouldn't allow more than a week supply at a time so I thought this was a medication I took for 2 weeks on and 1 week off. Turns out I should be taking it everyday. My Doc was nice about it but concerned that meant I was only getting 25% of the dosage I should have been getting. Between my scrambled chemo brain and the insurance company I done messed up big time!!! LOL So I'm on the straight and narrow now.. Hope it makes a difference in my tumor markers. I also saw my G.I. Doc yesterday. She said my reaction to the Octreotide is the exact opposite of what it should be. I'm going to quit giving myself the shots and see how I feel. By the way, I gave my oncologist a copy of the soundtrack to the Beatles' LOVE show in Las Vegas. It's really beautiful...includes lots of wonderful songs including "I Am the Walrus." My doc is Chinese so he didn't grow up hearing the Beatles. When I saw him yesterday he told me that he" doesn't understand it but he really likes it." Made me laugh!! I just bought him Beatles' 1--he said he would learn the words and sing along!! Hope you all are having a wonderful weekend. We have actually had some sunshine the last couple of days. Rare in the Pacific Northwest of the U.S. this time of year. (think London weather!!) LOVE and HUGS to you all, Cathy
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Ok I can not take feeling like this anymore !!! Somebody please give me so advice ??
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Kimchee,
What is going on? General pain, or something specific? Can you call your doctor?
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Oh retro! Glad you got that straightened out. Hope the TM's take a dive. I'm still waiting for my Xeloda to arrive and am getting anxious. I had ANOTHER paracentesis on Thursday but the super uncomfortable bloated feeling just never goes away. Walking around too long wears me out and I begin to feel terrible. Wish it would just go away. Maybe the new med.......
That is pretty funny about the Beatles and your Onc!
Yes Kimchee, what's going on?
Have fun at the wedding Southern! Have you ever looked into microblading for your brows? I have no idea how that works but mine are pretty sparse too and miss my old substantial ones.
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Hi all-
Well, my eyebrows for the wedding looked pretty good, if I do say so myself - haha! My wig didn't look so great in pics. Seems that it looks so fake to me and kind of clumped together in the front in a few places instead of spreading out naturally. Not sure why - I had just washed it the night before. I looked fine before I left to the wedding but then the wind....ugh.
Cathy - your relationship with your MO sounds like a fun one - I'm sure he loved your Beatles gift. Glad you are now on the right dosage with the Afinitor. We have to keep up with so many things and it's easy to get off a bit with chemo brain. I've done it myself.
Artist - hate that you had to have another paracentesis this week! Praying Xeloda will knock out the ascites for you. Xeloda worked well for me for over a year. Was quite tolerable for awhile until the HFS got bad. Know that I wish I was on it again though - much better than IV infusion chemo I think.
Enjoy your day all. 💕
Kimchee - let us know what you are experiencing and we will help you and support you as best we can!
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So my stomach as bloated up sobad I went to the hospital and the fluids in my stomach drain . Well it hasn't help and I'm so uncomfortable . I don't want to eat or drink anything . Someone please help me throught this
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Kimchee, I found after a paracentisis that my abdominal area really hurt. You build up so much fluid in your abdominal cavity, it's like your organs are floating...and then they remove the ascites and everything is suddenly hanging. I would have to lie on my side and put a pillow under my stomach for support. I also took some kind of pain meds. I really worry though that they missed something at the hospital. Could you possibly have a partial bowel blockage? If you don't feel any better, I would follow up and contact the doctor on call. You sound so scared...I'm so very sorry. Please follow through and get some medical help! Wrapping you in a big hug! Cathy
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Kimchee, I'm sorry you find yourself in that position. My abdomen is getting more and more bloated and is so uncomfortable. Pretty sure I will have to have it drained soon. Hope you feel better soon!
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Hi all,
I've been lurking for a little while after Southernsurvivor pointed me to this thread. I found out in October that the cancer has now spread to my peritoneum (started as pleural effusion with some mets in my bones). It wasn't entirely clear to me what they were referring to as the radiologist referred to lobulated soft tissue which was suspicious of capsular disease. Recently I was able to confirm this means the peritoneum on the right side, surrounding the liver.
As you can imagine, I'm not precisely over the moon with this development and think I was in denial for a few weeks. It's so surprising as everyone thought I would respond well to treatment with almost 16 years between original diagnosis and the mets. However, so far Taxol and Anastrozole have failed. I'm now on week two of my second round of Xeloda, hoping for some good results.
I am really unsure what to expect and am very worried about the potential for ascites as I know how some of you are struggling with this. Did the ascites lead to your diagnosis or did it come on gradually with time? I've had it up to here with fluid issues after months of draining my lung and so hope I can avoid fluid in my belly. Here's hoping Madame X beats it back.
Wishing you all some relief and effective treatments ahead.
Pat
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Hi everyone,
It's been a while since I last posted ( back in Feb this year). I was first dx in 2009 and after chemo and radiation I had 7 trouble free years on Tamoxifen. Then in Sep 2016 after feeling full after small amounts of food and throwing up, I had a CT scan which showed I had Mets in my omentum and bones. This was confirmed by a biopsy of the omentum. I have ILC. I started on Affinitor, Exemestane and Xgeva shots but the affinitor made me so ill, I stopped taking it. I had a good year on Exemestane and Xgeva until Mets to the liver were diagnosed in Oct 2017. I had a liver biopsy which showed my cancer has changed from ER+, PR+; HER2- to ER+ , PR- and HER2-. I also had a brain MRI and bone scan which showed no evidence of cancer in the brain and unchanged bone Mets. In the last 2 months I've also been diagnosed as a type 2 diabetic, for which I take 1000mg of metformin and 26 units of insulin daily.
Anyway, tomorrow I'm starting 4000mg of Xeloda (2000 morning and 2000mg at night), plus I'm taking Targin for the pain I'm feeling in my upper tummy, which I'm sure is the liver but my oncologist says it's the o mental disease. My doctor said I will continue with the Exemestane too because we are dealing with two different types of cancer ( the ER+ targeted by Exemestane and the PR- targeted by Xeloda) . Has anyone else had this sort of diagnosis or been prescribed an AI and chemo at the same time?
I'm feeling a bit fed up tonight - fed up with cancer and the way my life seems to revolve around it. I have to take 9 tablets in the morning and 7 at night, plus an insulin injection. I hate this. Sorry for the whinge. I'm having an updated CT on Monday to hopefully have some targeted liver treatment. I know there are others in a much worse predicament to me. Giving everyone a gentle hug and sending my best wishes for good days and nights
Cheers, Judy
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Pat - I can certainly understand you've had enough with all your recent issues! I started out with liver mets back in May, then peritoneal mets around the liver and my latest scan of Oct showed a beginning of ascites. They came on gradually for me and I feel it getting worse. Wishing you the best on Xeloda - a lot of gals have good results with it.
Judy - sorry you have to join this thread as well and for what you're going through and don't be sorry for the whinge - perfectly legitimate. I have no input on the your combo of AI and Xeloda but I'm sure others will chime in. Good luck with CT scan and target tx.
Hugs to both of you!
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Just found out today I'm going back chemo nextweek peritoneal carcinomatosis is not from breast cancer . So I guess now I'm walking around with two different kinds of cancer in me . I wish they would just rid of cancer Happy Holidays ..... not
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So sorry kimchee......it's a rough ride that's for sure. I agree with retro that getting a drain does make your abdomen hurt after and mine has never really felt normal since I hate to say. I am anxious to start new Tx and PRAY that it helps.
Linda, I'm sorry you have to deal with the ascites too. Did your current Tx do anything for that or will they change or add something to your regimen? I am supposed to start Xeloda any day. Just to have my abs/stomach feel even 50% better would be a Godsend,
Magpie, whine away, we all do it. We are all here for support and totally get it!
Southern, I was very disappointed in how my wig looked at my daughters wedding too. Just not natural and it got wind blown too, tangled. I looked gaunt and way older than even 4 months ago ....it really bums me out because I feel like these could be the last professional pictures we get of the whole family. Thanks for the Xeloda info. I am praying as usual, IF I ever get it???? Specialty Pharmacy is dragging their feet.
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Artist - no, my current tx doesn't seem to be helping. I'm seeing MO on the 4th of Dec and will discuss then. I really wish your pharmacy would stop dragging their feet! Is your neuropathy any better?
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How do you get back in the game after going through 3 kinds of med and each failing you ? I want to be around for a long time for my family
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Artist something is not right. This happened with Dani also, we waited and waited, then we found out that pharmacy did not have this one info they wanted from doc, but do you think they called us? NO so e/o was thinking that e/o is doing their thing, in the meantime no one was watching the chicken coop. Well, supervisor 1 supervisor 2, and much aggravation finally she got her meds. So make sure they are all doing their thing.
Kimchee that's crazy, which cancer would that be?
LindaE so sorry you are going through this difficult time. So much suffering.
Judy welcome Pat welcome -
Souhern so sorry about the wig, darn - but did you have a good time?
Cathy the beattles it is! The next generation, my children in their 20's love it too.
Dani already had her 2nd mapping for the Phase II of the Y90. It should be done next week. She is drained, hungry,tired, anxious. She had rads to the skull/brain/orbits for 2 weeks and yesterday started rads to the rest of the body, 2 weeks and a few days, in the meantime she will have the Y90. Painful and tiring. the Y90 messed her up, she was vomiting, so hopefully doc will give her better meds this time. Then the rads to the head, Cspine, mandibular made her nauseous, and her throat is killing her, so she cannot eat. She lost weight again. I can't even think, she is 5'1 and less than 80lbs. She could barely keep water down. NOW, she needs to drink the water, aside that her potassium plummeted, she needs to keep drinking to help keep the blood from clotting in her bladder, which happened again this week. This is a nightmare. Tomorrow morning, she has an appointment with URO but i know he won't have a/t to tell her. It's very rare what she had, bladder hemangioma, they don't even know really how to take care of it. If a/o has ideas of heard something about it, then please chime in.
Her peritoneal is hurting more, her ascites are mild. Maybe maybe doc will do an MRI and we will be able to see what's going there. GN everyone.
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Morning everyone. Sorry so see so many of you having such a hard time. I hope you all can find some relief soon. I have been reading the posts here and have a better idea of what I may expect from this bout of cancer. You all are amazing women.
Had an appt with my onc yesterday. Had to skip my round two of Gemzar because counts went way too low from Gem/carbo round 1. ANC went from 5.03 to .6 😲 Yesterday was at .99 so I got Gemzar only. He is switching me to Gemzar/Cisplatin next round. Hoping my counts like that better.
Will get another CT scan beginning of Jan to see how its working. 🤞
So far so good. I don't feel sick which helps, but them is frustrating to know cancer is in me but I don't feel sick. Think alot has to do with CBD oil. Ever since I started that end of first occurence I've felt good.
Hope everyone is able to enjoy Thanksgiving. I do my best now to enjoy everything and look forward to all holidays with hope and happiness. Even celebrate birthdays now, which I have't done in years. I will be 53 on St. Nicks day.
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So how is chemo now a days ? Is it better and I'll be able to live somewhat normal life or is it still shitty?
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Milwmama, Can you elaborate on what to ask for with the CBD oil? Does it make you tired? I tried one form in more of a resin state and I hated that I got super tired in the head but couldn't sleep. It was quite weird. Luckily I live in Nevada where it's legal and the dispensaries are plentiful.
Kimchee, It would be very helpful if you posted your treatment regimen and other stats. it just helps people know specifically how they can help you.
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so has anybody got help for peritoneal carcinomatosis ? Or do they just drag you along? I have bone mets which is just in two spots .I've been dealing wit this for a year , it seem to slowing getting worse . Ive been on Ibrance for a year and then it stopped working Ifinitor and my doctor wants me to go on Chemo What I want to know is chemo nowadays harsh like 10 yrs ago or have things improved ? I'm so sick of dealing with this shit !! Hope all had a great Thanks Giving , and Lord I beg of you to help us all
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Kimchee- Xeloda seems to be the easiest chemo so far and so far it’s working. I am in my fourth cycle and my tumor marker has dropped to 66. It’s been a true miracle. I too failed on Ibrance. Talk to your doctor about Xeloda. It’s in pill form so no weekly transfusions. Hope this helps. Hugs..
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Hi Everyone...Been sick all week with a sore throat. No fever so I don't think I have strep. No Thanksgiving dinner this year. None of us felt good enough to have Thanksgiving. The holidays are off to a rip roaring start!! LOL Kimchee, no 2 people react to chemo the same way. What is impossibly hard for one person is a breeze for another. If your peritoneal carcinomatosis is not related to breast cancer, I would imagine some of your chemo options would be different from those of us with breast cancer related peritoneal mets. I'm sorry you're having such a hard time right now. Welcome, Pat! I think ascites has been different for everyone. I started out with stomach issues (gastroparesis) which then led to ascites with floating strands of cancer cells and diagnosis of peritoneal mets. I had ascites for about 8 months with as much as 7 liters removed at one point (miserable experience). The chemo I was on at the time, Navelbine, worked and did help with my ascites problem. Haven't had to have any removed for a couple of years. Good luck! I'm supposed to leave for Hawaii on Tuesday to take my sister-in-law's ashes to Kona. Hope I feel good enough to get on that plane!! I miss her sense of humor so much. She's always in my heart! LOVE to all of you, Cathy
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Thanks for the welcome Cathy. Sorry to hear you are dealing with a sore throat. As if it's not bad enough that we have to deal with all the stuff that comes with this diagnosis, we also get the nasties that make the rounds as well. Fortunately I have dodged the flu/cold bullet so far. It hasn't been easy given the number of staff members who have either been down themselves or dealing with sick kids.
Well... I'm in a bit of a waiting game again. MO has ordered another CT scan (honestly, I am going to light up brighter than Xmas trees soon) as there are indications that the Xeloda is also not working. That will be zero for three since diagnosis. If the scan confirms I am not sure what the next stop is in terms of treatment. Likely another chemo.
Hope my other neighbours to the south were able to enjoy Thanksgiving. Wishing you all the best for the weekend. Pat.
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So why the hell cant they get rid of this peritoneal carcinomatosis ? I'm so tired of it
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Wow retro, I am praying that when I FINALLY get my Xeloda it knocks my PC to the curb because you are right. It is a miserable thing to go get drained. Even worse is to not go......I sure hope you make that plane and get rid of the sore throat! Very sorry about your SIL.
Crud Sadie, I hope that's not the case with the Xeloda. You deserve a big break and a Tx that keeps you tooling along for a good while.
Yes Diana! I hope I am as fortunate!
kimchee, I echo what retro said.
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I am truly scared about doing chemo again
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kimchee, All you can do is try. You can always quit if it's too much.
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Artistatheart - I use Charlottes Web/Stanley Brothers CBD/Hemp Oil Everyday Advanced. The company is based in Colorado. I have been using it since May 2016. No side effects at all, and not tired from it.
I personally will always take it, forever. It is not only for me with cancer, but anyone that is looking to improve an ache or a pain. It is not taken FOR cancer but as a help to those that have it.
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Thanks Milwmama! I'll look into it. Have to go for "the procedure" today. I have not been this nauseous or bloated for a long while. Sure hope the new meds knock it out forever.
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