peritoneal carcinomatosis
Comments
-
Leydi, so glad to hear your good news on so many fronts.
Has anyone with a peg experienced a bad smell with it? I've had mine for about 3 months, but in the past couple of weeks it's started to stink - yuck!
0 -
Jaylea I have a dangler that was initially a JG tube, now just G. It hasn’t gotten stinky but always has a faint smell of formula.
I’m drinking most of my formula now and gradually adding other foods, mostly soups. My stomach still slows down after chemo but on my week off was digesting quickly. I’ve started drinking atablespoon of olive oil a couple of times a day as a way to add calories with minimal fluid. So far I am maintaining my weight pretty well. If I can continue maintaining it and don’t have any other stomach issues I think I can ask to get the G tube out.
0 -
Liwi, that is the best news possible! Here's to fewer body attachments!
0 -
Hi Leydi,
I've had my Pleurex in for almost two years now. At first I was draining one liter a day, but now it's down to one liter three times a week. I had a bit of leakage at the beginning, but now it only gets a little itchy once in a while. As many of you mentioned, I too feel fullness to actual pain after eating or drinking, especially too much fatty food. I have to sip water all day and night so I don't get dehydrated and eat very slowly. Stool softeners and gasX are life savers. Hang in there.
0 -
ARC...I'm interested in a pleurex drain...I've been drained every month for last 3 months. What does it take to convince them to put one in? My onc says I'm not drained often enough.
Also, is Xeloda helping you? I'm interested in that as well...any side effects?
0 -
EV11....I'm interested in the peritoneal chemo without HIPAC as well...do u mind if I ask where you are having this done and doctors name?
0 -
I just got a drain installed. We were draining over 4 liters/ week for 3 weeks when my MO ordered if. I got it last week. Home health drained another1.7 liters Friday and I feel like I will need to be drained again tomorrow when my home health nurse comes by.
0 -
Liwi, I’m in the same boat as you. Initially told it was constipation but after 3weeks I demanded to see my onc who got me right in. Not one doctor noticed the fluid wave but my onc immediately knew what it was. Had 4,700 mls drained. I looked 9 months pregnant. Next week they put in a Pleurx catheter and drained another 4,000. Got infected immediately, 4 day hospital stay. Works great, I drain it myself 2x day getting 1,000 each time. Still producing a lot of ascites. Diagnosed with SBP last Wednesday got treated to another hospital stay. On the mend now but it’s such a drag. Impossible to shower or swim. This is the hardest part of this whole experience. Also, leaked profusely first 3 weeks from site due to so much pressure from the fluid. Had to change dressing and clothes 5-6x a day.Not for the faint of heart
Jill
0 -
Oh Jill, it is so frustrating. Home Health drained 1700 Monday and another 1300 today. Felt good but starting to feel pressure again already.. hoping my new chemo combo gets this under control fast. I feel myself getting weaker day by day.
Was it hard to learn to drain it yourself.? I'd be happy to drain twice a day if it would keep me from feeling bloating.
Liw
0 -
liwi, I’m a squeamish person so the thought of doing it myself grossed me out. But then my three kids wanted to go on our annual trip to South Carolina so for them I put on my big girl pants and learned. Very easy and so convenient if all of a sudden you’re feeling full and need to be drained. Just be sure to wash properly before and keep sterile during
Jill
0 -
It’s been pretty quiet for a while on this thread. I hope all are doing fine.
My drainage volume has gone down quit a bit and I’m hoping that is a good sign that the gem/carbo is working. Jill I still haven’t learned to do it myself, admire you for handling it. It doesn’t look hard but for now it’s been really convenient to rely on my home health nurse who lives close by and makes me her first stop in the mornings I get drained. I’m hoping it continues to go down and it’s sure been nice to not feel so bloated.
0 -
What where the first symptoms you had when your cancer metastasized to your bowels/ peritoneal area. I’ve had diarrhea for the past eight weeks and my doctor doesn’t know why. I’m scared it has moved to my bowels. Any insight?
0 -
Hello there,
I’m hoping that maybe someone could help me? I had a gangrenous appendix removed three weeks ago. As it was an emergency appendectomy and that I was in Spain on holiday it happened really quickly and the surgeon spoke very little English and our Spanish is very poor.
The surgeon told us after the operation that he had seen white modules on the peritoneal lining and that I had peritoneal carcinomatosis. However, two weeks later when the biopsy of the modules came through no malignancy had been detected.
My Ca125 and Ca15.3 are normal, I have no other symptoms and my CT scan was normal other than appendicitis and bone mets. Do any of you have normal TM’s as well as scans? Have they missed anything? I am not convinced that I have dodged the bullet
Thank you x
0 -
Hi Vevs,
I can’t speak to your situation but can tell you that my TMs are completely useless. I have extensive bone mets and pleural mets and yet my Ca 15-3 has only ever been slightly elevated. Bone scans are equally useless for me - they always significantly underestimate my burden of disease. I have had thickening reported around the capsule of my liver which may be indicative of cancer but soft tissue stuff can be tricky (never confirmed via biopsy).
I think the negative biopsy is likely accurate. The surgeon would not be able to tell by looking at it and it may be areas that are no longer active. The way I look at this is, I am stage IV regardless and, as long as it isn’t visceral, I’m not too worried about some nodules.
Hope you can get some clarity from your cancer care team.
0 -
thank you,
This forum has been invaluable and I have not needed advice or support for a while. Your reply has grounded me and I’m very grateful. The tailspin’s that Stage 4 cause play havoc with everyday life don’t tgey
0 -
Hello. My name is Melanie and I was dx in 2012 with ILC. 3 years ago it spread to my bones. I have been stable in faslodex. Now I had an abnormal CT scan and my colonoscopy biopsies came back positive for metastatic breast cancer. Its in the whole colon as every area he biopsied was positive. Im shocked and scared and feel hopeless. My oncologist at Mdanderson in jax is like saying we knew the day would come that the treatment would fail. And Im like well how do we know if a treatment is working? My tumor markers have run a constant 40 for 7 years. Bone scan doesnt show my bone mets. Ct scan only picked up a narrowing of the colon in 1 area. It doesnt show it in the rest of the colon. How do you deal with this? Im trying to read thru this thread. Thank yall for all the stories that have been shared
0 -
Hi Melanie,
My gut involvement is a bit uncertain (there was indication that it spread to the capsule around my liver which is how I ended up as part of this thread) but, while I have not been diagnosed as ILC I suspect there may be ILC components. Like you, bone scans and tumour markers have been completely useless. My RO once commented that my bone scan looks like a normal person but my CT scan? Whoa... mets all over the place. I also have pleural mets which are equally tricky in terms of trying to figure out if they are stable.
Ultimately, my advice is to take a deep breath. Your oncologist is remaining calm - this is the reality with all these drugs. Three years on Faslodex is a good solid run but eventually it did have to fail. I'm counting the days until it fails for me as well given that the median PFS for the drug is about 8 months. In my case I decided to layer on Verzenio (which is beating me up a bit but that's another story). The first progression is always scary (I progressed within the first year on Arimidex) but take heart that there are a lot of other treatments out there that can help. It's good news that the CT scan only picked up a small amount of narrowing as that would imply that three is no threat of blockage.
I know it's very challenging for those of us who are difficult to assess. I've found it completely frustrating but I'm learning to relax a bit and have faith in my MO (who is pretty marvelous). At the end of the day, he goes by how I am feeling. If I am off, he scans.
I hope this helps. I know the others will be along soon to chime in. In the interim, sending a big hug!
Pat
0 -
Thank you Pat. I appreciate your response.
0 -
Hi, While I don't have the original diagnosis at the beginning of this thread, I do have BC intestinal mets, something which is rarely seen so I thought I would check in here where Abdominal Activity is happening.
The surgeon found a BC mets tumor around my small intestine where it connected to the large intestine, which was squeezing it causing me to loose lots of weight because I was too nauseous to eat-very little was getting through, a blockage that was only caught when the surgeon looking at a CT scan, thickening of intestinal walls. Nothing showed up on the colonoscopy (GI doc kept saying to eat more fiber). Surgeon said it was time to put a camera down there and see what was happening. After the surgery (took out about 6 inches and my appendix) I was so excited because I could eat everything and anything I wanted- It had been going on for at least 5 months. Unfortunately a follow up PET scan showed a new spot on my liver (an old spot was taken out in 2016) which was not on the CT scan 3 weeks earlier. They will consider liver ablation if nothing else shows up in the next 3-6 months. I'm very ER+ so I've started the last aromatase inhibitor I haven't used, Aromasin. I've had to stop Faslodex and Ibrance (I had a good 4 year run). My tumor marker, CA15-3 has been my friend and accurate through these many years (since 1998). The week after surgery, my marker dropped in half. I don't have any bone or lung mets so I don't know how accurate it would be for them. Xeloda is still on the back burner when and if I need more "stuff".
Good Luck to you all on this journey! NINA
0 -
Hi Nina. Thanks for sharing. 4 years is a great run on faslodex. Bl
0 -
Hi, I notice this thread had been silent since Jan 2020, a Covid Casualty? I'm back on this thread with a great run on Xeloda after intestinal mets (18 months), and it is now in my pelvic free fluid (FDG uptake) and nodularity on the omentum FEG uptake suggests metastasis. I'm going to try Taxol next. Has anyone tried the HIPEC treatment for their peritoneal mets? Do they take MBC patients? I'm looking at the research now and will try and talk to doctors this week. It's a long term thought, but nice to know there are many options out there. Hopefully Taxol will work for a long time. Take Care All, Nina
0 -
I am new to this thread.
I developed peritoneal ascites from combination of Y90 and Taxol..a potential side effect. It caused cirrhosis on some areas of my liver and it is angry.
I drain every 5 days and sometimes can make it to 12 days. Latest removal 2.9 ml.
I will start on a regular schedule of draining next week and monitor volume removed.
Currently, not on any chemo for liver mets. Thank goodness last MRI showed no active cancer.
Any advice? Will ascites be the end of me?
I do have varices and something about fetal vein usage. After 2 ultrasounds, cannot see portal hypertension, but IR believes it is there, just not seen. No malignant cells seen in fluid.
0 -
Sandi- I have peritoneal mets found in my pelvic fluid ( FDG lit up on PET/CT with contrast). Are you saying there are no cancer cells found in the fluid they are draining from ascites? I don't have ascites yet, but i hope I can control the fluid mets systemically (with Taxol at the moment). Sorry all your procedures have lead to some liver damage which can hopefully be reversed.
0 -
Has anyone heard of the TIPS Procedure. If so, did you have this same time as chemo?
0 -
Hi NinaCA, they did not find malignant cells in ascites fluid that was drained off via paracentesis.
Frankly, I don't know what is going on in the way my angry liver will correct itself or not.
On the bright side, my sweet daughter bought me maternity clothes so I don't look so bad...all very modern.
0 -
I guess I posted in wrong thread. Was looking for paracentesis info with routine drainage.
I have portal hypertension, varices, and recanalization of umbilical vein. My last peritoneal drain was 2900 ml.
So I will keep searching.
0 -
Hello ladies. This is Stacy’s (Harleyhoney) good friend. It is with a heavy heart that I pass on this news. Stacy passed away in the early morning hours on Thursday. Thank you all for supporting her during this time and those of us who love her will truly miss her. Hugs, Pepper
0 -
Pepper_B, I didn't have the pleasure to talk with Harleyhoney, but another passing is just so sad. We've had multiple ladies over the last few months pass. Please accept my condolences. Please ask the mods to add her to the in memoriam list so she can always be remembered. Cancer suckssss
0 -
Stacy is a dear friend of mine and I’m sorry to inform you that Stacy passed away last week.
0 -
Well, this is a very quiet thread, maybe we can rejuvenate. I see looking at other threads, that people with omental stranding, nodularity, possible peritoneal carcinomatosis, bowel obstruction, are often posting elsewhere.
I have extensive bone mets that are competely controlled with treatment since they were diagnosed in 2018. However, my tumor markers, after tanking on Ibrance/Femara, started climbing around 2 years in, and scans showed thickening of bowel wall, increasing nodularity suggestive of carcinomatosis, infiltrative changes to the omentum, etc., and so I was switched to Verzenio/Faslodex. After about 6 months in, CA 27-29 tumor markers were stable but high (around 400 to 500), omental changes still showed but stable (no growth), and no FDG uptake on PET scans. However, I started being unable to eat foods I was always able to eat. Long story short, about 1 year in on V/F, I was hospitalized with severe pain, vomiting, related to a small bowel obstruction. CT scans showed increasing ascites. Nothing lit up on PET scan, though radiologist said given continuing but stable infiltrative changes to the omentum, PCcould not be ruled out. I was kept on V/F til my 2nd ER visit a couple months later for vomiting and pain, when ascites was identified as now moderate, and paracentesis was suggested to rule out PC (peritoneal carcinomatosis). A repeat PET still shows nothing different, nothing lights up, but the cytology of the ascites is positive for ER+, PR- breast cancer, HER2 low. I am now on everolimus (Afinitor), Faslodex for last 5 weeks. Dare I hope that it is starting to knock back the cancer affecting my intestinal system? My biggest problem is struggling to eat without pain or triggering another blockage, but still get enough nutrition. I was advised to eat nothing beyond what could fit through a 16 ml syringe (pureed, liquefied diet). I have lost 35 lbs (yay but what a miserable way). My tumor markers are now 700. A lot of trial and error on finding low fiber food and drinks that work. BOOST, apple juice, chicken broth, baby cereal, yogurt and eggs in small quantities are my staples, but not yet enough to maintain weight. For the last 3 weeks I have been feeling OK more often than not, diminished pain most of the time, but ith some bouts when I try to eat a little more volume. I’d love to hear from anyone with similar experiences and suggestions for managing partial bowel obstructions/stomach pain/constipation related to PC.
0
