peritoneal carcinomatosis

NinaCA

Moomi, I ended up with a small intestine resection in 2019 after a year of trying to diagnose why I was having stomach "issues" including vomiting (once through my nose). Finally a CT scan showed the walls of my small intestine thickening and gradually closing down the digestive tract and a peritoneal node involved! My markers had been stable and nothing in CT scans before that since 2015. It turned out I have LBC, Lobular breast cancer, and it had grown around the outside of the small intestine, squeezing it. Lobular is sneaky that way, small little tumors, net like, instead of bigger solid ones. They have recently found it in my omentum, and pelvic free fluid (took 4 months of searching for cause of very high markers). Taxol has now brought scans into "resolved" range, and markers are almost near normal. Very scary. I don't know what to say about your digestive issues. I hope you can find a good solutions soon.

Moominmamma

Hi Ninaca, Thank you for responding. I am so glad to hear Taxol has helped control your cancer. I'm hoping that Everolimus is helping some. I have been going through longer stretches without pain/food getting stuck in bowel, if symptoms are accurate. Had an MRI enterography by GI doc last week, which showed one area of partial small bowel obstruction and inflammation, and surrounding bowel distension. Answer is BC meds, he said, too risky to put in a stent at the location. So I'm waiting to see if tumor marker coming down yet, and if meds work. It could be my dietary/medical mgt is making it easier to eat, I don't know. If scans not good in 6 weeks, on to Xeloda for a try. Thanks again for sharing your experience!

KBL

moominmomma, I had never heard of the enterography. I’m sorry you’ve got some obstruction, but I’m glad the pain is better.

I have always had tummy gurgling. I mean all the time. I have also suffered with constipation, but it’s been a little worse lately. My stomach doesn’t gurgle at all anymore, and I’m wondering if something is going on in my bowel. I don’t have pain, though, so I just keep telling myself it’s nothing. I have the cancer in my bones and stomach, so I always wonder where it’s going next.

I hope your new med does the trick. For what it’s worth, I’m on Xeloda, and I find it very tolerable, but I hope you get a long time on the treatment that you’re on now.

Moominmamma

Thank you for your kind words. Fwiw, my CA 27-29 is over 700 now, highest it has ever been but small increases over last few months. Now 2 months on Affinitor, scans in a month or so. I am feeling well enough however, my DH and I are flying to Grand Tetons/Yellowstone for 8 days starting tomorrow. This is a trip cancelled twice over the last year, first when our first grandchild was born early and we went to Chicago to help care for her and new parents, second time because of COVID fears when Delta was rampant and crowds huge out there. I have never been, very excited to go!

NinaCA

Moomi- Hope you had a good trip to Yellowstone and Grand Tetons. Is Afinitor still working- and bowel issues are resolving. If you switch to Xeloda, at least it is a pill. I did Xeloda during Covid so I would not have to come in to the infusion clinic. They even delivered the drugs to my house for free! It was harder on me than Taxol, my feet specifically were more sensitive to blisters, learned to walk around in soft Dearfoam slippers most of the time. I looked up MR Enterography after your comment- I'd never heard of it before but it sounds like a good test for looking at abdominal problems. Take Care...

Moominmamma

Hi Ninaca, We loved the Grand tetons and Yellowstone. I was able to the so-called easy hikes, about 5 miles a day, despite SOB (lots of rests to catch my breath)and the beauty of the place was so magnificent it made me very happy. Best of all, no stomach issues on the trip! I thought meds must be working I felt so well. Unfortunately within 2 days after we got back,I ended up in hospital with another blochage. Ugh. My oncologist has ordered a pet scan now, as he suspects may be time to switch. My diet is now clear liquid/full liquid, mostly seem to be doing OK on it.

Did I mention we were in Yellowstone when it flooded & closed? Crazy experience, so terrible for Gardner residents. But we were able to see a lot, and we ended up driving back to Jackson through Idaho, Alpine, to explore more of the Grand Tetons. I recommend it!

maryland

Hi all, I was dx with extensive bone mets in 2020, been stable but had a PET/CT last week and report came back saying..

Interval development of a cluster of hypermetabolic mesenteric lymph nodes within the right lower abdomen, adjacent to right ureter, which are concerning for metastatic disease.

My MO is ordering an abdominal CT and then biopsy of the nodes. Also my CA 27.29 and CEA are creeping up over the last 6 months or so. Hard to find info on any of this, I’ve come back to BCO after a 6 year hiatus, I’ll read back on this thread but wanted to jump on and say hi, thankful for the info and support I know I’ll find here. My name is Mary

lawgirljenn

Hi Maryland (Mary), and everyone else.

I'm Jenn. I'm 43. My original diagnosis was Stage 2b ILC back in 11/2012. In Feb 2020, I was diagnosed with Stage 4 with mets to bones only. However, I had been having stomach issues for over a year prior, and eventually the scans showed mets to the peritoneum. It has since spread all throughout the GI system.

I was sent to the ER earlier in the week because I was unable to have a bowel movement for over four days. Turns out the cancer is all over the colon, constricting it in such a way that it's causing low motility. I have a meeting with my oncologist on Monday to discuss everything. I just had my 5th dose of Abraxane last week.

I don't know what to think anymore. I feel like I'm running out of options. Abraxane is my fourth line of treatment. I know there are lots more out there, but the cancer seems to adapt quickly. (Like the Borg! LOL - sorry, I'm a nerd).

I've made my peace with dying for the most part. I'm just not ready to leave my family. My kids are 12 and 16. They still need me. I want to see them grow up.

I'm just babbling at this point. It feels good to be in a space where people understand. Stage 4 is so lonely. I hope we can get this thread active again.

Nkb

Hi Jenn,

I don't know what treatments you have already tried and I hope you find a good one next. I am sure that other people will chime in and you may want to check out the clinical trials thread as well.

I just want to mention that there is a new treatment that may be really worthwhile that have just been approved for Her 2 low (when your FISH is negative, but, IHC is 1 or 2+ (this occurs in more than 50% of people that are Her 2 negative) you can ask for the test to be done on a biopsy or may find it on the path report of your original breast mass.

this medicine is called Enhertu or TdXd or Trastuzumab deruxtecan- I would ask your doctor about it. also consider Neratinib in combo - see Shetland Pony's old posts.

Good Luck

maryland

lawgirl, you were 33 at original dx and your kids were 2&6? Oh how hard that must have been, and I'm sure still is. I've not come to peace with dying yet, I got a bit unconcerned with it after being stable for the past 2 years, now I feel like it's come to slap me in the face again. However I am 64, my son is long since raised and as much as I hate the idea of leaving my granddaughters 8&3 they do have parents. I'm not saying that I'm not hopeful that we both have some years left. I guess with this f-ing disease that's the way it goes, as soon as we get a bit comfortable with stability we are reminded to look it all in the face again. Now I'm babbling. Stage 4 is lonely that's why I decided to come back to BCO. It helped me so much in the beginning, I made some good friends, then I found that the more time I spent here the more I thought about BC and I wanted to move on. Then I found out about the bone mets in 2020, at the same time as the beginning of Covid, I retired, got divorced after 20 years and moved. I've been too busy to think about cancer, but this has been a punch in the gut. I'm down to 2 friends that I talk to about it, the ones that really want to know. I’ve found that when people ask “how are you?” The answer they really want is “I’m good.” So they can move on to topics other than cancer. Sorry about the rambling message, I've been wallowing this morning but I'm going to get up now, put on my big girl panties and start my day. Hope yours is good.

maryland

lawgirl, you were 33 at original dx and your kids were 2&6? Oh how hard that must have been, and I’m sure still is. I’ve not come to peace with dying yet, I got a bit unconcerned with it after being stable for the past 2 years, now I feel like it’s come to slap me in the face again. However I am 64, my son is long since raised and as much as I hate the idea of leaving my granddaughters 8&3 they do have parents. I’m not saying that I’m not hopeful that we both have some years left. I guess with this f-ing disease that’s the way it goes, as soon as we get a bit comfortable with stability we are reminded to look it all in the face again. Now I’m babbling. Stage 4 is lonely that’s why I decided to come back to BCO. It helped me so much in the beginning, I made some good friends, then I found that the more time I spent here the more I thought about BC and I wanted to move on. Then I found out about the bone mets in 2020, at the same time as the beginning of Covid, I retired, got divorced after 20 years and moved. I’ve been too busy to think about cancer, but this has been a punch in the gut. I’m down to 2 friends that I talk to about it, the ones that really want to know. Sorry about the rambling message, I’ve been wallowing this morning but I’m going to get up now, put on my big girl panties and start my day. Hope yours is good.

NinaCA

Maryland, I had emergency laparoscopic surgery to my small intestine and it came back ILC cancer (not seen on scans). It was also in a perirectal node where a biopsy confirmed BC ILC. It has gone to my pelvic fluid (helpful in getting meds changed) and my omentum. Basically peritoneal carcinomatosis. Currently Taxol has made it all disappear on scans, but one never knows where and when it will reappear, It's a tough place to treat and find. I just try and go with what's working and keep hoping all this drug research will be my friend as it has been in the past. I sometimes get information overload and go back to playing words with friends, or bingeing on the new Star Trek series that have recently been released.

Moominmamma

Hi folks! Ninaca, when you say Taxol has made it all disappear on scans, does that mean you don't have gastric problems either anymore? If so, very promising treatment! Myself, I had another hospitalization for obstructions 2 weeks ago, (no NG tube this time because I had dehydrated myself to try to deal with bloating & gas pain), but was put on IV and watched for 3 days for stomach to clear liquids, and then went home. However, the scans documented PE (pulmonary emboli) in right lung, so now on blood thinners. Have been off Everolimus for 2 weeks, onc is keeping me off until I have another MRI enterography (close review of intestines) to see if there is a change from May. My pet scan in July is basically stable compared to March. The CT scans in latest ER visit showed increased bowel thickening since June, either inflammation or PC. I should know by end of next week what next drugs will be. We know Enhertu will be in the picture, but not concurrently with Xeloda doc says. When I'm not having stomach pain & nausea I feel good, I can swim, walk (not in heat though!!!), travel. Spent last long weekend in Boston, MA area, swimming in Walden Pond, enjoying Gloucester beach and the arboretum. No stomach pain, phew!

It is so difficult & depressing to have stomach issues, terrible for QOL, and I feel for all of you who have joined this club. The good news is - according to my onc - that it can improve with the chemo drugs and antihormonal therapy - so he said not to give up hope!

NinaCA

Hi moon, My doc again said it is a good time for me to take a vacation from Taxol (he told me 3 months ago too but I didn't listen). My PET is stable with no Avid uptake anywhere. BUT it does show Parietal peritoneal thickening. I asked my doctor if this is still cancer and he said ye, it's just not showing up on scans. My markers are beginning to go up. If I stop Taxol for 2 months I should have good quality of life for a while, give my bone marrow a rest from the chemo and stop the neuropathy in my feet from getting worse. BUT the cancer will come back if I stop (and even if I don't stop). I could continue back on Taxol except my MO is very excited about me trying Enhertu, he thinks it will be a game changer. While it's not antihormonal it is a drug conjugate that lets chemo into cells in a targeted way. Do I stay with Taxol while it appears to be mostly working, as I continue with side effects, or take a break now and restart in 2 months? At the moment I don't have stomach pain, I do take a Tums every night to avoid indigestion. I do worry about my weight gain- from decatron I think, and wonder if it is ascites. this is never mentioned in my reports but I assume pelvic fluid or bloating could be called ascites? I only hear of it if someone needs it drained.

I was on Xeloda for 14 months, it was a good drug and came along at the right time for me. Good luck with your decisions and QOL.

Moominmamma

Hi Ninaca,

I wonder how you are doing and whether you have switched off Taxol to Enhertu. And if so, how is it going?

My most recent PET shows no SUV pickup, but increasing ascites, and an MRI enterography says no blockages at that time, and decreasing inflammation of intestines. Still have infiltrative changes to mesentery. So despite pretty good scans, I still can only manage a full liquid diet. It seems whenever I add any soft but solid food I get blockages creating pain, bloating, nausea, that can take days of minimal clear liquids only to finally get better. And constipation continues to be a problem. The ascites is giving me a round belly and my legs are now swelling dramatically. I gained 8 lbs since Sept 1, water apparently. So, doc is switching me to Piqray, and then Xeloda if Piqray doesn't work. He wants me to feel better. Continuing to hope!

NinaCA

Hi Moon, I am still on Taxol. Doc said I could stop and take a vacation since scans are stable, I may not have another chance. I'm afraid to stop the Taxol. He thinks my neuropathy will get worse and may be permanent. My markers are beginning to rise so I think somewhere down the road the PET will pick up something and I will have to start a new drug (Enhertu). It's the pattern with chemo that it is good until it's not, unpredictable when. So sorry about your liquid diet, no SUV activity good, blockages bad. Hope Piqray works. Are you lobular? Mets in this area are usually lobular. Take Care, you will get better!!!

Moominmamma

Hi Nina, I've never been dxed with lobular cancer, only DCIS and IDC. But on my biopsy from underarm lymph nodes when I was dxed metastatic, report said poorly differentiated tumor spreading all over underarm. That was a bad sign as it means it's hard to contain and may go a variety of places, I think. My doc describes my cancer as tiny seeds of cancer causing changes to mesentery and omentum, bowel wall thickening, etcso even though nothing lights up as hypermetabolic on pet, just to have these changes indicates a cancer spread. The ascites fluid leaks from the peritoneum, and since I don't have TB or cirrhosis, PC is the diagnosis, and the bowel problems likely caused by little cells adhering to outside of bowels, stiffening them, producing scarring that further increases likelihood of blockages. So here we are. Piqray arrives in mail tomorrow. I'm afraid of it's SE, honestly.

NinaCA

Moon, I am also PC. Your profile says that you were ER-, PR- and HER2 -, then became Her2 + in 2012. Have you had recent genetic testing? Piqray has been tested on people with a BRCA mutation, or PICK3CA mutation. Other mutations like PD-L1 have treatments and immunotherapies available. Have you been taking Herceptin with your other treatments or are there reasons you are not on the drug? If you go to Xeloda, it worked well for me for 12 months. There's a new drug, TUCATINIB that includes Herceptin and Xeloda (capcitabine), also ENHERTU uses a drug conjugate that helps direct the Herceptin and work better on cancer cells. The combination is much more effective than just one therapy alone. Everything has side effects, sigh.

Is it possible to drain the fluid? are you taking anything to reduce the fluid build up (like Lasix)? Systemic treatment is the way to go.

Hugs, Nina