peritoneal carcinomatosis
Comments
-
So sad. Wishing her peace and comfort. Love and comfort to all the ladies on this site. I'm new. I know it is hard for all of you who knew these women. Janet
0 -
my wife has retro peritoneal nodes and liver mets and has been drained twice in 10 days (2 Ltr each time) and she is under WBR so MO tells us that he can't treat liver mets and peritoneal nodes now as it would be too toxic on body. My query 1)How do I know that the ascites needs to be drained ? 2)Since she failed on Femera after 10 months ,will the ascites keep on building till the.new treatment kicks in?
0 -
Many,
I just wanted to say I'm so sorry about your wife's ascites and the failure of femara. I have stomach mets but don't have ascites, so I can't answer your questions, but hopefully someone else reading this can very soon. From reading other posts previously on this thread, it seems the ascites give you an extended stomach and make you very uncomfortable - some have drained daily and some weekly. I do also remember different chemos have helped reduce the ascites for some. What chemo is your wife on currently? It seems each individual has a unique experience, so hopefully working with your oncologist with provide some answers for you.
Bestbird has prepared a MBC guide that is very helpful and informative. Look under the Stage IV forum. The thread is the 5th one down for me titled "Request your FREE MBC GUIDE (Over 2,000 Copies Sent).
Wishing your wife all the best - please keep us updated!
Sheri
0 -
my wife was on femera which failed and now will switch over to new dru
0 -
Many,
I was curious as to which new drug will your wife be treated with next?
0 -
35 minutes ago Rosevalley wrote:
Dear friends, I'm writing to let you know that Rosevalley (Cindi) "crossed the river" on Sunday afternoon Jan. 22. It is hard for me to express how much we appreciate the kindness and friendship you all have extended to Cindi these many years. Cindi found great happiness and comfort in sharing life's events, stories, laughs, and tears on breastcancer.org. It is so wonderful that this place exists for such warm sharing.
Best wishes to you all on wherever this journey takes you. Much love,
DH Kirk and DD Anna, Audrey and Amy
***copied from another thread: 'Rosevalley - this is for you!' ***
0 -
NoUGo-CA,
Thank you so much for the update. This is such sad news today. Rosevalley was such a kind, compassionate woman whose posts I so enjoyed and learned from. It was so clear how much she loved her husband, children, friends and furry animals. Three women on this thread have now died of mets to stomach in the past 2 months. Just not right! Prayers to her family during this most difficult time.
Big hugs to all tonight,
Sheri0 -
There are no words. So sorry to hear of Rosevalley!
Babs
0 -
So sorry about Rosevalley--it's almost unbearable right now. So much negative going on it's hard to process it all. At least you are out of this crazy world Rosevalley. I will miss so much your wisdom and caring. We all really need each other. I hope we will all take the time to post once in awhile. Love and hugs, Cathy
0 -
How are you all doing? I know I'm in a bit of a funk right now - finding it hard to come to this thread knowing our recent losses. I am hopeful we can keep this thread going to support each other. I'm on cycle 4 week 1 of Ibrance & Letrozole, although not sure yet if it's working. My TMs have been up, then down, then up again last cycle, but all pretty small changes relatively. I think the bloodwork after this 4th cycle should be more telling, as I've heard this combination does take a bit of time to kick-in. Really hate wondering all the time if meds are working! Ugh.
Take care all - look forward to you all checking in.
Sheri0 -
Hi everyone,
News of Risevalleys passing was very sad - made even more so by news that a good friend of mine passed away the same day here in Australia (Perth) from mbc. She had only been Stage IV for 9 months. This news threw me into a pit of unbearable sadness. Cancer seems to take the most lovely, vibrant women. It sucks. These losses also bring home my own diminished mortality and if I'm honest, I am sad for myself as well as sad for their passing and those left behind to grieve.
I am feeling well (I have so much to be thankful for) . I have a CT scan booked for the 8 Feb and a bone scan on 13 Feb. I am worried about what the results will be - these are the first scans since my Stage IV dx last September. I hope though that things on the inside are as good as I feel on the outside. I have just been on Exemestane and monthly Xgeva shotssince diagnosis. I did try Afinitor for three weeks but the se made me very sick and so this drug was stopped. Ibrance is not available on the pbs yet here in Australia (still in the clinical trial phase)..
Love to you all and please do keep this thread going. I don't post often but do check it regularly and have found everyone's posts to be so informative.
Judy xx
0 -
Hey everyone! I could use some feedback--pronto! lol I started having more gas sensations in my abdominal area this week. A feeling of abdominal fullness (inflammation?) has gotten worse over the last few days and now I have discomfort on the right side under my rib cage (liver?). I will probably have to call my Doc tomorrow but thought I would run this by all of you first. Any ideas? Can you feel it if cancer has moved to your liver? I'm worried but curious! Hope you are all doing well. I think about you every day!! Hugs, Cathy
0 -
I just checked my last blood test and my liver tests don't seem to be elevated. So maybe my latest treatment isn't working or hasn't had time to work. I'm back on Ibrance only 100 mg. this time and Faslodex instead of Letrozole. Just started 2nd cycle of Ibrance. Hope you're having a great day. Cathy
0 -
Hi Cathy -
I have more stomach gurgling now that I'm on 125mg Ibrance and Letrozole and sometimes stomach pain. My pain is always on my right side too but my duodenum is 100% blocked and I have a blocked stent in there, so not sure if pain relates to that. I'm always wondering too if the sounds and the pain mean progression. Honestly, the last time I had progression in the fall 2016 when I was on Xeloda, I actually felt great, so who knows?? I do monthly TM bloodwork after each cycle of Ibrance. (My CA 27-29 counts have always been a good indicator of cancer activity and progression before scans pick it up.) I'm in the middle of cycle 4 right now and TMs have been relatively stable so far, but not decreasing like I was hoping. I guess we will see after this cycle. I have heard Ibrance takes some time to work. I'll be interested to see what your oncologist says. Take care and keep us updated!0 -
Well, kind of good news. I apparently have a virus that has had me throwing up out of both ends! LOL My daughter has it too so I know it's not cancer related. I'm betting all my symptoms I developed in the last week will end with the virus. Off to the bathroom and then hopefully a nap. Happy Monday!! Cathy
0 -
Cathy - who knew a stomach virus would be such a welcome diagnosis - haha! Sorry you have that but it is so much better than any cancer-related alternative. Hope you feel better very soon!
0 -
Hi Sheri,
Like you, I'm feeling a bit overwhelmed by sadness and loss, and like Judy, I feel as though I'm looking at my own demise. Right at the moment, I'm in good shape, able to eat normally, having good energy, able to work full time. But I can see the handwriting on the wall - I have some sense of what the end will be. It's weird knowing what it will be and yet not knowing when it will happen. So I've decided to retire and take some time to travel and play with my husband before the big shut-down begins.
Ibrance did not work for me at all and my onc kept me on it way too long. It seemed like such a miracle drug in all the trials, so I guess the thought was to give it a real chance. Like you, my cancer marker stayed about the same for a while, and then started climbing. In addition, I started having more and more ascites. Otherwise, I was mostly feeling pretty good. Eventually the ascites became an issue and I started having paracenteses - first at 3 week intervals, then every 2 weeks, and fairly quickly they were taking 3 liters a week. After about 7 months on Ibrance/letrozole, it was finally decided that I wasn't getting any benefit. I truly hope it works better for you, but I haven't noticed any great results from Ibrance on this thread. I think you're right to watch it closely.
You wrote that you have 100% blockage in the duodenum. Yikes! If you don't mind my asking, how does that play out with respect to eating? I had a partial blockage last summer, and couldn't take any nourishment by mouth for more than a month. I was so lucky that I got put on Adriamycin and it worked. And the ascites has abated, too - I only drain about a liter every 2 weeks now.
HI Cathy,
Hooray - this must be the only situation when it's great that all symptoms point to having a virus! My scans show mets to the liver, but so far, I don't feel anything. My onc said the liver is big, so it takes a while for the mets to affect blood work and bodily functions.
Dianarose,
Are you still following this thread? I hope you're doing well, but I miss your voice!
big hug to all my belly mets sisters,
Erica
0 -
Oh Erica, I'm so glad you are going to take time for yourself! I call it making memories! I'm with you. We all have somewhat of an idea of what our future holds and it's not pretty. I focus on what I can accomplish right now, try to have fun and once in awhile I eat that chocolate cake! I'm feeling a little better but not enough to try eating at this point. This virus is no fun but at least it's not cancer spread. Love and hugs to you all. Cathy
0 -
Hi Erica - glad you are retiring now when you are feeling well! I was actually "forced" into retirement- literally was at work on a Friday, worked from home starting on the following Monday for a few weeks as I got so sick, then went to the ER one day when working from home, and then never returned to work again. Not a fun way to stop working.
To answer your question, I am able to eat normally today due to major stomach surgery in March 2015, which moved my intestines from my right side to the left side, attaching intestines directly off my stomach. This completely bypasses my blocked duodenum. It was a 3 week hospital stay and several month recovery, but saved my life. My surgery was after being on a feeding tube for many months (I was completely unable to eat or drink anything) and also on chemotherapy. The thought was the feeding tube would be short term as the chemo would shrink the cancer, which to this day has never happened. The combination of these two things almost killed me. My doctor says I am a walking miracle, which I truly believe. I started on Xeloda 2 months after surgery and was doing quite well until I had progression and switched to Ibrance & Letrozole in Oct 2016. Ugh.
Erica, are you draining your ascites yourself?
I was just thinking of Dianarose too - praying she is doing OK.
Cathy, praying each day you feel better.
Hugs to you all!
0 -
Sheri, All I can say is WOW! What a survivor you are!! I am always amazed at how much we can take and come out the other side. I didn't think I was going to make it 2 years ago with a partial bowel blockage and my stomach not emptying. I was so sick I lost 60 lbs in a short amount of time. Wish I could say I kept it all off but when my stomach woke up, I was starving! This virus has been a doozy but I'm so relieved it's a virus! lol I wish for all of us continued strength and a sense of humor to get us through the bad patches. LOVE and HUGS, Cathy
0 -
Holy cow, Sheri! They really can do that? That's amazing! So much to endure, but it sure beats being on tubefeeding or TPN for the rest of your so-called life! I figure if I get to the point where I can't eat by mouth, I'm outta here. Your story gives me hope - there's certainly more than one way to skin this cancer cat. Congratulations for getting through all that and may the ibrance/letozole combo do its job!
I'm draining the ascites at home, but don't do it myself - my husband, whom I've dubbed "Nurse Morty," helps with that. I probably could do it myself these days, but when I came home from the hospital, I was so weak that it made more sense for him or the visiting nurse to do it. We joke that it gives us an excuse to spend quality time together. I think he feels so helpless around this disease, which is very demoralizing. This gives him something concrete and useful to do and it's not as yucky as some caregiving operations can be. He's been great - I'm so lucky to have his steady love and support and companionship.
Cathy, I had the same experience with recovery from a partial blockage - came out HUNGRY and put all the weight right back on. What I hated was that even at my skinniest, I still had a bulging belly. You just can't win! (So you might as well eat chocolate cake). Wishing that virus outta there soon so you can eat and be merry again.
Love and hugs to all. - erica
0 -
Yes, this BC metastasizing to the stomach is definitely not for the faint of heart. To add one other nuance to my story, I also have a stent in my duodenum, which is completely infiltrated with cancerous tissue.
When I was finally diagnosed with BC mets in May 2014 by Mayo Clinic (after about 7 weeks of not being able to keep food or drink down, losing 40+ lbs, and 2 endoscopies finding a blocked duodenum but no cancerous tissue by a Dallas gastro,) I went to Mayo and they found the cancer in my stomach lining/wall. They decided to insert a stent in my duodenum to open it up and allow me to eat soft foods and drink, while I did chemo to shrink the cancer tissue. Mayo said the stent would last for years. Well, after only 2 months, despite having IV chemo, the cancerous tissue grew into the stent and I had a complete blockage again. I ended up in the hospital in early August 2014, and had the feeding tube placed into my intestines for nutrition. This craziness went on and on - couldn't make all this stuff up if I tried! By the way, it was a Dallas surgical oncologist that performed my surgery. He usually works on pancreatic cancer patients that have had a blockage for a few weeks. I had had my blockage for 7 1/2 months when I saw him.
I do have a question for both Erica and Cathy, how did you resolve your partial blockages to allow you to eat again?
PS. I love chocolate cake!
0 -
Hey Sheri! My stomach issue was caused by gastroparesis caused by the cancer. It had been developing for at least 6 months before it was diagnosed. It then took another 3 months before there was enough ascites to test to prove it was from the cancer. That was when I was diagnosed with the peritoneal mets--just a little over 2 yrs ago. I started chemo (the name of which escapes me at the moment) but had to stop because of elevated liver enzymes. Then I had the partial bowel blockage. After removing all the built-up fluid in my stomach, the blockage worked out, I guess, on it's own. I started Navelbine and was on it for the next 4 mos. It did work for me and reversed the cancer cells to the point it cured the gastroparesis. My Doc said the cancer cells were blocking the electrical stimuli that tells your stomach to empty. From the previous Sept. of 2014 until May of 2015, I lost the 60 lbs. I'm starting to feel better today. Think I'm going to live! lol I know we all had a shock the last few months losing so many wonderful ladies. Hang in with us please. I firmly believe we need each other. Love and hugs, Cathy
0 -
My peritoneal mets were diagnosed pretty much at the same time as the breast cancer in 2012. After surgery to remove the lump in my breast and several lymph nodes, the cancer marker didn't go down. Nothing lit up on a PET scan except an abdominal lymph node, but a CT scan showed "stranding and haziness" on the peritoneum. An omental biopsy showed that the breast cancer had taken a trip south.
In March of 2016 I started on taxol and had an infusion reaction, which started me on a series of desensitization sessions. That drug did me no favors. It wasn't effective against the cancer (the marker kept going up), and it affected my appetite and taste buds. I lost a lot of weight from not being hungry or inclined to eat. Then, starting one day in early August, I couldn't swallow anything, not even my own saliva, without severe abdominal pain, so I wound up in the hospital. Scans were pretty indeterminate - the small intestine looked - hmm, I forget how the report put it - thickened? swollen? Anyway, one guess was enteritis, so first treatment was intravenous antibiotics, which did no good. I had to give my bowels "a rest," so nothing by mouth for several weeks. My blockage was only partial, however, because I was still "passing gas." Eventually they put me on Adriamycin which seems to have done what Sheri's IV chemo didn't do - shrink the sucker. (Whatever they say, I'm convinced that the prolonged ineffective treatment with taxol allowed the cancer to infiltrate the small intestine and cause the problem) I was on TPN for about three months, and gradually started re-introducing the novel concept of eating by mouth, first ice chips, then clear liquids, then all liquids, then soft foods. By thanksgiving I was finally eating almost normally. It took a while to get up the courage to try really fibrous things like raw celery.
But, I'm back and happy to be here! The weird taste things have gone away. Eating is one of life's pleasures, and it's really rotten when you can't do it comfortably.
Cathy, I hope the effects of the stupid virus have subsided and that you can begin to chow down once again!
Cheers! - Erica
0 -
my wife has liver mets with ascites and few peritoneal nodes seen on PET SCAN ,Now the MO Has put her on IBRANCE + FEMERA since last 2 days ,the fluid builds up every -4 days to about 2to2.5 litres .I am confused as the fluid buildup is not stopping and MO says that it needs to be drained till IBRANCE starts to work ,you all may please provide your inpu
0 -
Dear Many, I only know that with some cancer treatments it takes awhile before you can see that they are working (or not working). I hope someone can give you a more technical answer. I had ascites drained for months before the cancer was beat back enough that the ascites stopped. I also know that damage to the liver (in your wife's case the cancer) is the #1 reason for ascites. Sending love and hugs, Cathy
0 -
Hi Many,
I'm sorry you and your wife are having to go through this. It's very stressful and confusing! How long has your wife been on Femara and Ibrance? It does take a while to figure out whether or not the treatment is working. Does her oncologist look at tumor markers and are tumor markers a reliable indication in your wife's case that the cancer is progressing? Sometimes the combination of rising tumor markers and more ascites is a good indication that treatment isn't working.
What I learned when I was going to the hospital once a week to have the ascites drained was that they wouldn't take more than 4 liters a week without also giving me albumin. Albumin helps to regulate the body's processing of fluids, and the draining process removes albumin along with protein and other nutrients the body needs.
Then I got a catheter, and was able to drain the ascites myself at home. At one point, I was draining 1 liter of ascites every day. My albumin level was quite low. My oncologist recommended that I not drain more than 4 or 5 liters a week. In addition, I had to eat a lot more protein to get my albumin level up into the normal range. As the albumin increased, the ascites decreased. Now I can go 9 or more days, and only drain about 600ml and my albumin is in the normal range. Do you have to go to a doctor to have the ascites drained, or can you do it at home?
I don't have significant liver mets, so I don't know how albumin and protein levels interact with impaired liver function. That would be something to ask the oncologist.
I hope the drugs prove effective and beat back the cancer to give your wife some relief. When it's accumulating fast, ascites can be very uncomfortable.
Hugs,
-Erica0 -
Hello everyone! Just checking in. I dropped 10 lbs with the virus I had. I am finally feeling much better and am getting out today to go shopping with my daughter. My cancer symptoms are quiet right now so feeling great about that. Hope all of you are having a wonderful day! Love and hugs, Cathy
0 -
Hi Cathy, Glad to hear you are feeling better. Abdominal stuff is uncomfortable to deal with. I'm doing the opposite with my weight. I went for so long not being able to eat much before I was diagnosed and the first few months of treatment. I had lost about 40#. Now that my gut is working better I am slowly but surely gaining it back and I don't really want to. It doesn't help that it's winter and I'm not as active. I try to walk every day, but I do a lot of sitting too. I am due for scans the end of the month. My tumor markers are stable and my other labs are good. I just have been having a funny little feeling in my rt upper abdomen just at the base of my ribs. I always get nervous at scan time. Hope everyone in this group is doing well. It is encouraging to read your posts and see how everyone is managing. I'm at the beginning of this little road with just 1 year under my belt. Janet
0 -
Hi Ladies -
Cathy - glad you are back to health and active again.
Janet - sounds like you are doing well. Stable TMs and labs are great!
It was a rough morning today. Found out that my tumor markers went up a lot this past month. I just completed Cycle 4 of Ibrance & Letrozole, which the results never really showed any good news this whole time, and I will now be moving on. My onc had me do a Guardant 360 blood test today (to see if it detects any cancer mutations), which could help determine the next course of treatment. Should have the results in 2 weeks. Also, will be doing a CT scan. I meet again with him in 2 weeks to discuss the results of blood test and scan and then determine next course of action.
Can you all tell me what protocols have been successful for you? I've been on quite a few, so i want to provide input to oncologist in order to make the best decision we can for next treatment. I've been on Faslodex, Abraxane, Gemzar & Carboplatinum, Xeloda, and now Ibrance and Letrozole.
I would appreciate any suggestions and sharing your experiences. I'm just sad right now. Going through all this is truly a physical & mental beating.
Hugs to you all,
Sheri
0
