peritoneal carcinomatosis
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Jill,
Oh my gosh, your volume is really a lot and I’m sure you are miserable! The first time I had a paracentesis was last September and they drained 2 liters. 15 days later, it was 3.6 liters. Then 10 days later, it was another 2 liters. I felt so terrible with the ascites. I felt like I was about 5 months pregnant, especially before I had it drained the second time. Ugh.
In my case, I had stopped my chemo in late July that had quit working and I was waiting to go get a biopsy at Mayo, so had more time off chemo than I wanted (or should have.) It was during that time that the ascites built up. There really wasn’t anything I could do to get it to go away, except that it finally did about 6 weeks after I started on another chemo (and after the 3rd draining.)
I wish I had tips to share. I felt like no one (doctors, nurses, etc.) really had much knowledge on ascites when I had it. They just told me to get it drained when I got to the point of being that uncomfortable. I had a standing order after the first time I had a paracentesis that I could just call when I wanted to have it done again. In your current situation, I would just say be a “squeaky wheel.” You have gone through too much to get a drain for it not to work properly!
Sending you a virtual gentle hug tonight. 💗
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Hugs to all. Jill and Southern so sorry for what you are going through right now
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Hi gals - well, things are going from bad to worse. After finding out from my CT scan results that it looked like a tumor was in my colon that covers 5.3 cm, I met with my gastro doc Monday to review the scan images and actually was able to schedule a colonoscopy on Tuesday morning. (They had a cancellation and I hadn’t eaten anything yet on Monday.) Hated the prep - it was coming out both ends. My stomach is so sensitive now and the taste of the prep solution just made me sick.
Colonoscopy found that the 5.3 cm area that is in the mid-descending large intestine looked like a huge narrowing from tissue/cancer growth, growing from all sides of the colon. My gastro couldn’t even get his instrument through the narrow passage. He took a lot of biopsies from the area but is quite sure that it is BC mets (vs. colon cancer.) Biopsy results should be back tomorrow, I believe. Literally, I just cried when I saw the pictures as it looks like it could close up and cause a complete bowel obstruction any minute. Other areas that he looked at didn’t look like a healthy pink colon either and had irregular margins. I’m so disappointed. I don’t have any confidence that chemo will keep this area from closing up. This is exactly what happened to me 5 years ago this month when my duodenum became 100% blocked. The tissue growth closed it up and 4 1/2 years of chemo has never caused the tissue to recede. I have an appointment with my MO to discuss this on Friday and I also want to get an appointment ASAP with the surgical oncologist who did my stomach surgery 4 years ago. I’m not going to know I have a bowel obstruction until I start throwing up and have severe stomach pain. Seriously, this is about the worst news I could have received. I want to be proactive and not wait until I have to go to the emergency room one night.
For those of you who pray, please pray for me as you read this as I am truly in a bad physical state right now. Bone mets have progressed too, but this colon issue is really bad. Thanks for listening and any suggestions you have are welcome.
Take care 💕
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Oh Southern. I’m so sorry to hear this. I wish I had some advice or knew what to say. This damn disease is so heartless. Know that I’m thinking of you and praying for you. Wrapping you in a big cyber hug.
Pat
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Hello, fellow peritoneal Stage IV'ers. I've just started on Xeloda and am having a decent amount of palm pain. Any suggestions? Avon Moisture Therapy seems to be pretty good at staying on through hand washing.
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Southern and Grrifff you continue to be in my thoughts and prayers, hoping very much that you can get good healing and a better QOL.
I’m feeling relieved that I had good results on my PET scan post 3 cycles on Halaven. It showed some mets disappeared, others stable and nothing new. It also mentioned that I have prior broken ribs healing on my left side which explains my left side rib pain. We believe this happened during my port surgery when I had a a tachycardia and they had to do CPR. It’s common to break ribs when doing CPR but I wasn’t ever sure if mine were broken. I’d started to worry that I had cancer in them, funny that hearing they’d been broken was good news.
I haven’t had Xeloda so I don’t have experience with its hand issues but when I had them from Doxil they suggested I use Aquaphor for drying and cracking, and I use Udderly Smooth cream.
Love and hugs
Barb
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Thanks, Barb and Pat, for your prayers. It’s a scary time for me right now. I did get an appointment with my surgical oncologist who performed my stomach surgery 4 years ago. Appointment is this Tuesday. Was unable to meet with my MO this pastweek, as my biopsy results weren’t back yet. I’ll be meeting with MO sometime this next week.
Barb, congrats on your PET scan results - that is wonderful news! We need good news to keep us going.
Amy, I was on Xeloda for over a year and used the Udderly Smooth lotion. Honestly, I didn’t really find any lotion that took away the terrible redness but this lotion with urea cream did help somewhat with the dryness, cracking and pain.
Jill, how are you doing?
Hugs to each of you! 💕
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Hello, all... this thread has been quiet for a while. Hope people are doing well and enjoying life as the reason...
I'm looking for input from anyone on this thread who has ever had intraperitoneal chemo for their abdominal metastases... Especially WITHOUT undergoing the debulking HIPEC surgery... But I'm also interested in hearing from anyone who has done HIPEC, too.
If so, what did you do and was it effective at reducing your evidence of disease or palliating your symptoms?
Did it cause side effects? Short-term or long-lasting?
What chemo regimen did you use?
Where (clinic/hospital name, city, state) did you have your treatments?
I have finally found an oncologist who is at least willing to talk to a MBC patient about this procedure....I have contacted a number of GI/GYN oncs (they do this procedure far more frequently than BC oncs) at clinics throughout the country and none of them are willing to talk to this MBC patient...especially since I also have bone mets and would need to continue on systemic treatment concurrently (although IP chemo is often paired with systemic chemo, so I don't really understand the denial b/c I have bone mets....)
But I finally found someone open to consulting with me (and right in my city!) I'm meeting with this GYN onc next Friday to discuss this option with her...not sure she will be willing to do this for me, but I want to discuss the possibility. My primary onc is supportive of my having the consult but not too certain that IP chemo is a good path for me to take; it's untried and unproven (outside of a few case reports) in MBC and only is successful in a very specific subset of ovarian/colon/GI cancers. But my extensive small lobular lesions seem to be the kind of cells that should respond well to this local application of chemo. Most of the chemos used penetrate 1-3mm into tissue, and most of my mets are 1-3 mm in size...I feel like now, before I have significant symptoms and larger lesions, is the time to investigate this option.
Any thoughts, advice, guidance and especially reports of your experience is very welcome. And I hope you all find a moment of joy in your day.
Elizabeth
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Hello all,
I want to say thank you to all of the brave women and men that have posted here and shared their experiences. I've been reading through the thread- I'm only on page 26- and I feel so lucky to have the ability to read and experience so many stories. I felt the loss of Stephanie, hummingbird and rose valley like they were friends.
I was initially diagnosed with IDC in 2007 at age 35. Stage 3, grade 3 with 23 positive lymph nodes. My first oncologist greeted me with " your prognosis is not good." Fast forward 12 years and now with my third oncologist I was blindsided by my mets Dx last October. I started getting sick about a year ago, it all started with gastro issues, anemia and fatigue. In September I had some lymph nodes in my neck swell and my internist ordered CT scans which led to my mets Dx to some lymph nodes and bones. After 5 months on Kisqali and Letrozole and another set of scans my MO said I should get in touch with my GI and get a scope because he saw nothing from an oncology standpoint to be causing my gastro symptoms. I had the scope 2 weeks ago and biopsies were taken. I got those biosy results on Tuesday where my GI told me it showed my breast cancer in my stomach. I see my MO onthursday. I'm devasted, scared, and angry that this didn't show up on any of my scans although I'm sure it's been there all along.
I will do whatever it takes to have as much time as I can with my wonderful husband who I just married 2 months ago today! I will continue to read through this thread and learn more from those who have walked this road before me. I wish you all peace and love on this journey that has united us all.
Much love,
Sherry
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Elizabeth, did you try to consult with Sarah Hoff at Moffitt? She is a GI interventional radiologist that's often listed among the best on Internet lists within Fb MBC groups.
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Hi Sherry
It seems that we are neighbours. I live in Strathroy and go to London Victoria hospital for treatment. I suffered from kidney problems in January of 2018;and all the doctors reassured me it was not cancer even though I had ILC in 2014 with 23 positive lymph nodes. It took three months to diagnose me metastatic to my peritoneum. I wear nephrostomy tubes because the cancer is pressing on my ureters.
I have been wearing them for over a year now and it is not an easy road. However life is still good and I have more good days than bad. This is a great thread and many women here have been a great help and comfort to me.
Please message me if you have any questions.Marina
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Thanks Marina! I have family and friends in Strathroy and lived there for a while myself. I go to Victoria hospital as well. I haven't seen my MO since finding out about stomach mets. I see him Thursday. I've been having the same gastro issues for almost a year so my guess is this has been the case all along.
Thank you for your kind words. Maybe we will cross paths someday.
All the best,
Sherry
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just a quick question for y'all: have your CEA values been relevant in detecting your abdominal mets?
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hello all,
I'm hoping everyone is doing well! I finished reading through the entire thread and will go into my appointment tomorrow armed with knowledge and for that I can't thank you all enough! I am terrified of what could happen in the future but also at peace knowing that those that walked before me have given me such an incredible gift.
Last night I also mourned the loss of Dianarose and I'm assuming Cathy. Did anyone ever hear from her family or confirm her passing? Those ladies were a force!
I hope to continue posting here for a long time, it's so important to support one another and share our experiences.
Here's wishing you all a peaceful, pain free day.
Much love,
Sherry
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I'm hoping someone on here can help me with this. I just had a PleurX catheter placed in my abdomin yesterday for ascites as I had 4 previous paracentesis procedures and the fluid build up was not slowing down. My oncologist, the onc's nurse practitioner, and the nurse at the hospital all kept saying that this was the right thing to do and how much easier it would be.
Well, it's been a bit of a disaster! The outpatient procedure itself seemed to go fine but everyone seems to think that I should have very little discomfort afterwards and I'm in quite a bit of pain if I try to stand up or move around. I called the hospital call number they gave me at discharge but they didn't seem too concerned if I wasn't running a fever, although they essentially told me I shouldn't be feeling very uncomfortable. Meanwhile, everyone had talked beforehand about getting me set up with "home health" to check on me the first few days and get me started with the PleurX system. However, it turns out that I have no insurance coverage for home health services unless I'm homebound. I'm still working full-time! A patient coordinator at my onc's office apparently spent most of the day on the phone trying to get this resolved and couldn't. She finally said that a couple nurses at the onc office would "take this on and do the best they can" with me coming into the clinic.
If you have an abdominal PleurX or similar system, how much discomfort did you have in the day or two afterwards? I also feel like the side with the incisions/catheter is larger/firmer than the other side. The hospital nurse seemed perplexed about this when I called so I still have no idea if this is normal or concerning.
Anyone?
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Greetings to all. I appreciate everyone’s posts and the support of this group.
Elizabeth I don’t have any knowledge to share about intraperotoneal chemotherapy but it sounds very interesting as a way to attack abdominal mets.
Leydi I am sorry for what you are going through with your acites and catheter. I hope they figure out what is causing your pain and get it fixed.
Sherry I hope your appointment went well. My stomach mets also did not show on my MRI or CT scan and were discovered in the biopsy my GI did when I had a endoscopy due to severe gastric acid issues.
I have my next Halaven infusion tomorrow, then will have a week off which will be nice. The weather I saw getting warm and I’m enjoying time outdoors.
Bar
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17 hours ago sherry35 wrote:
Hello all,
Thanks Liwi! So my onc, although surprised, feels that my stomach mets have most likely been there all along as I have been symptomatic for months- gastro issues were my very first symptom and never resolved. We do not feel that this is progression. He said tx plan would not have changed even if we knew back in November.I will stay on the same tx plan. New scans will be done at the end of May, this will be after my sixth cycle is completed. I feel confident in this plan.
Leydi, I'm sorry you're having these difficulties. I don't have any experience with this either but hope someone will chime in.
Marina, southern, Sadie, and others I've missed, I hope you are doing well.
I hope you all have a wonderful Easter weekend filled with love and joy!
Sherry
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Hi Everyone
Jill like Southern said you have an awful lot of fluid being drained. I also had a pump this January but my ascites decided to dry up within a couple of weeks so it was removed. I am still clear of them. My treatment is faslodex shots every month.
Southern I am so sorry for what you are going through. I understand about the tumour/ scar tissue problems because I also have them in my ureters and have to wear nephrostomy tubes. It is not a fun way to live. I hope your previous Dr. Who saved your life can help you again.
Elizabeth I did ask my MO about intraperitoneal chemo and she said that very few breast cancer patients qualify. I have not yet pursued this avenue so am very interested in your results.
Sherry I also hope you and all of of us post here regularly and for a long time.
The only complaint I have at the moment is abdominal pain. If feels like I've been doing a hundred sit-ups. Anyone else have this?
Love and hugs to you all and for those who celebrate Happy Easter
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it’s been a while since I last posted here. Still have the ascites but I’m no longer leaking at the site where the catheter enters my abdomen. That was the worst part. Also, I’ve started doing the draining myself. The visiting nurse or my sister was doing it. I get queasy and just the thought of it put me off. Well I put on my big girl pants and it’s a piece of cake. Some days there’s a lot other days very little fluid. I notice when I drink a lot or use salt there’s more fluid. My MO said sometimes takes months to dry up sometimes doesn’t go away at all. It’s been almost 2 months with the drain, I was hoping for a little more progress. Trying to stay positive-Jill
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Jill it’s tough as I can verify. Having to wear two nephrostomy bags in order to live is hard but what choice do we have? I wake up every morning looking at those two huge night bags and tubes attached to my kidneys and I get that sunken feeling. Then I shake myself, pick them up and start my day. I think if this is the worst thing that can happen to me I can live with it and I do. Too bad we bought a house with a pool, lol.
I am sincerely hoping you can remove that pump soon.
Hugs
Marina
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Good morning. I hope everyone is doing well! I'm not going to complain as I've had many good days in a row but today I'm eating crackers and sipping ginger ale to try and tame my tummy. Does anyone else get gurgling and a feeling of being so full but haven't eaten much? What do you do for such things?
I'm moving in two weeks so I have a lot to do. Hope this passes quickly.
Cheers all,
Sherry
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Sherry, yes I had this feeling for a month before I had a paracentesis. They drained 4,700 ml from my abdomen. 2 1/2 liters 😳 A week later they drained 4,500 ml when they placed a Pleurx catheter. Then I leaked out the area where the catheter was inserted into my stomach because there was so much pressure. I looked 9 months pregnant. I’ve lost 25lbs since this started in January. Mostly fluid but some body weight because my stomach couldn’t hold much food due to the fluid squishing it. I now drain twice a day to keep the fluid down and I can almost eat the amount I used to. I thought the chemo would make the ascites dry up but not yet. My oncologist said sometimes it doesn’t go away.
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This thread is quiet- how is everyone doing
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Greetings to all. I I am doing pretty well other than chemo fatigue. The good news is my chemo is working. Two weeks ago we determined that the stomach blockage from cancer between my stomach and intestines has shrunk and I am beginning tube feeding to my stomach rather than intestines as a step towards returning to normal mouth eating. It was going well until my digestion started slowing down after my chemo last week which makes it challenging to get my required number of feeds and calories. Last night I set the alarm to get up and do a feed at 3:30 AM to get my 5th daily feed. Reminds me of getting up to feed a baby! If this works it is a huge step. I haven’t eaten normal food since last July. It will take a while as my stomach is not used to processing food anymore. I’m starting with drinking small amounts of liquids along with the tube feeds.
Love 💕 and hugs to all.
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As some of you may know I wear nephrostomy tubes. The other day I was getting ready in the morning and one of my nephrostomy tubes on the left side got caught in a drawer and I pulled it out. This side was not completely blocked by the tumour so my ureter was opening up and I decided to leave it out. I am now measuring my urine output and seeing if this can be a permanent situation . My doctor says if I do not have flank pain to just leave them out and see what will happen. This is quite exciting for me since I have been wearing them for almost 15 months now and having one out is a big huge relief. So Liwi I completely understand how your progress is making you feel. Sherry I hope you are ready for your move and it goes smoothly.
Grifff I am hoping that your chemo will resolve the ascites soon.
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Liwi--this is great news! So happy to her this. Hope your slow, steady progress continues. It can take the stomach quite a while to get back into working order.
Marina- Sometimes it takes an unexpected intervention to get us moving in the right direction.I sure hope that your dresser drawer escapade is one of this things!
To all others.I hope that things are quiet because you are all feeling well and enjoying the change of season. We are having an unusually delightful spring in the Pacific Northwest.Am thrilled to be getting my garden in order. Although I have a surgical bladder biopsy (almost certainly mets...UGH) yesterday and so am having to take it easy this week.
I hope you all find some join this day. Blessings to all.
Elizabeth
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Hi, all. I ran across this thread after someone posted about it, and while I don't fit the literal definition, I'm a close cousin dealing with similar issues, so wanted to drop in and say hi. After months of decreased ability to keep food down, resulting in an ED visit due to severe dehydration and a 12-day hospital stay, I was finally, finally dx with an esophageal met that caused a stricture in my lower esophagus. I got a stomach peg placed in the hospital. The plan was to go on an intensive chemo tx to knock back the esophageal met (and other progression areas), and slowly wean off peg feeding to normal feeding.
I did 3 cycles of paclitaxel / gemzar, just finished this past Friday. Yesterday I had scans and will get results in the next couple of days. Next week I meet with my MO to discuss what's next. I'm feeling good and am actually getting some easy, smooth foods down, like puddings and yogurt. I'm working with a nutritionist and speech therapist on a diet plan.
Liwi, it sounds like you and I took different paths and ended up in a similar place. I was just getting the hang of gravity feeding when I started chemo, and it's as if my entire digestive tract went on strike. I had to wait hours for the returns to get low enough to feed, and was losing weight in the process. In desperation, the nutritionist put me on continuous feeding and that's worked, at least from a calorie/weight perspective. The downside - strapped to this thing for 10 hours a day. But hey, all in service to the goal, which is get through chemo and back to normal feeding. As it is, I'm able to cut back on the time and supplement with Boost or Ensure.
Anyway, I recognize many of your names from other sites and hadn't realized the challenges of what you go through. I've had a small taste of it and all I can say is you all are fierce. Hugs to all ~ JL
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Has anyone here had a duodenal stent ?
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Just an update. I posted about 5 weeks ago with pain and concern just after having a PleurX placement for ascites. I had several complications, including what turned out to be a sizable hematoma superficial to the abdominal muscles at the insertion point, failure of the insertion incision to heal with off-and-on-again leaking, and pain that everyone said I shouldn't have. It took a couple weeks and LOTS of phone calls and follow up to identify a medical supply company that could/would provide me with the PleurX bottles under my insurance and ship to my home. Even my own health insurance steered me wrong in this regard. In the meantime, I had to beg a bottle or two at a time from my MO office and the hospital where I had the procedure.
Everything is seeming brighter now. My supplies are arriving, my incision healed so the leaking stopped, the pain is very much decreased and I've actually felt the best I have in the last couple of days. *whew* Still concerned that the amount of fluid that builds up is not decreasing and, if anything, is actually increasing. It's been 3 months since I started treatment with fulvestrant/Faslodex, ribociclib/Kisquali, and denosumab/Xgeva. My tumor markers have started to come down and my 3-month-CT scan recently showed no significant changes so my MO was happy with that.
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You ladies never cease to amaze me! I don't yet have the experiences you have had but I am so great full that you all share! I wish us all peace and comfort along this journey! Much love!
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