peritoneal carcinomatosis
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UGH!! Having more abdominal issues. They usually last about 18 hours from start of pain until it stops. It then takes a couple of days for me to bounce back. I always feel so weak. See the Nurse Practitioner this week. Hope to get some answers. Hopefully just 2 more Navelbine treatments to go. I'm ready for a break of some kind from chemo. Hope you all are enjoying summer. LOVE, Cathy
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Cathy- I go through just what you are describing. Feels like dam contractions!
Had another failed kidney stent then our household got the stomach flu. Not a good combination with belly mets.
Feel better soon Cathy
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Cathy and Dianarose when you say belly mets, it's not getting eradicated at all with chemo? So sorry you guys are dealing with it all the time,It's in the peritoneum or in an organ nearby also? And how is your food digestion doing? Like my DD has in the liver, ascites, and now in the pelvic area and in the peritoneum. We'll see what the Pet/CT will show this week.
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I think at this point my pain is caused from the fact that my digestive system doesn't work as well due to the cancer in the abdominal area. I don't know if the cancer is active or if this is from damage from the cancer. I just have a feeling this is my new way of life and I don't like it!! Looking forward to being off chemo so I'm not also dealing with side effects from that. It gets overwhelming. Hoping to get my Doc to order a CT scan. My cancer doesn't show up on PET scans at all. I had soup and a little mac and cheese yesterday. Feeling better. Hang in Dianarose! We need each other!! HUGS, Cathy
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Guys I just accompanied someone to his Onco, he has stomach cancer. I don't know all the details at all, i was just trying to help a bit, anyway he had this abdominal pain, could not hold food down, spitting up some, so his doc sent him for an endoscopy, the CT didn't give much details, but there was a 6cm tumor that went down to 4cm, but in the endoscopy GI mentioned linitus plastica. Not an easy thing, but maybe an endoscopy is in order, i think it could be more detailed than a CT in this case. You should find out what the difficulty with the food is, sometimes you could reroute "stuff" or put in a stent etc... i know of people that felt relief with these procedures.
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Guys I just accompanied someone to his Onco, he has stomach cancer. I don't know all the details at all, i was just trying to help a bit, anyway he had this abdominal pain, could not hold food down, spitting up some, so his doc sent him for an endoscopy, the CT didn't give much details, but there was a 6cm tumor that went down to 4cm, but in the endoscopy GI mentioned linitus plastica. Not an easy thing, but it seemed more detailed than the CT. Maybe an endoscopy is in order, i think it could be more detailed than a CT in this case. It did show an obstruction that the CT did not. You should find out what the difficulty with the food is, sometimes you could reroute "stuff" or put in a stent etc... i know of people that felt relief with these procedures.Please understand, this is just my layman opinion.I am still trying to get a grip on it myself.
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So I am joining this thread as well as I was diagnosed with ascites, peritoneal mets blah blah blah. It was quite a long, miserable two months to finally get diagnosed. I thought I was suffering from constipation for WEEKS and all the people at my center kept telling me to try this OTC and that OTC. After weeks of that I decided this was more than constipation, plus I was so depleted I could barely stand. My Onc never mentioned the possibility......I went to the ER and a great Dr. there immediately recognized what was going on and got the ball rolling finally for relief. I ate so little for so long it has ben hard getting back to eating. Trying to be careful not to overdo. So anyway I completely sympathize with all of you who are having gastro discomfort and pain as I know first hand how utterly miserable it can make your life. I hope you all find relief soon....
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So sorry, Cathy and Dianarose, that you are both having stomach/digestion issues right now. I hate that for you.
Momallthetime - glad your daughter is hanging tough.
My belly mets are growing now and creating issues for my left kidney per the latest CT scan. I'm on vacation visiting my parents right now, but go home on Tuesday and start chemo (Halaven) on Thursday. I'm just coming off Ibrance and Faslodex and it's going to be tough going back to IV chemo. I have enjoyed functioning mostly normal for a long while, which I'm going to miss.
My CT scan also showed increasing ascites in my pelvic area. I'm hoping the chemo will help reduce the cancer and ascites.
Cathy, I agree that it is hard to know what is causing the digestive issues. As I've stated before, my duodenum is still blocked 100% even when the cancer activity was reduced. Seems like the ILC caused tissue growth that has never rescinded at all in almost 3 1/2 years.
I do pray for us all. 💕0 -
Artist as I just mentioned on the liver thread, you are already better, just by being with you new care team, that seems to be more caring. It does mean a lot. If you could communicate with them etc..
Southern... it's a tough go, they do say that Chemo could give it a good bang. It may be in the cards for D also i really hope this new trial did something for D. Otherwise....gotta wait a whole week for the Pet/Ct to know what's up
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Artist, welcome to our thread of only a few ladies, but so sorry for the reason you had to join us. We all suppport each other well and share our experiences, as we are a rare breed it seems with belly mets. Not too many doctors know what to do with us as they are not familiar with all the problems these mets bring.
Can I ask you what the ER doctor has given you for some relief? I too suffered for a long time before being diagnosed and kept being told I had acid reflux and inflammation and they gave me protonix. That was just the beginning of my journey with belly mets over 3 1/2 years ago. Really glad that ER doctor was on top of it and had a good plan for you - makes a huge difference. You are right - gastric issues are miserable.
Take care - goodnight all! I pray for a restful, pain-free night for us all.💕
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I am sorry I have not responded to all of your kind words earlier. Thank you all. Ibrance is being kicked to the curb and I am going on to Carboplatin and Gemzar. I am happy to move on but sad the "cool new drug" did not work for me. I am glad so many are doing well with it and hope it lasts forever for you. I will keep on trucking!
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Emmapeel how did they see it's not working?So sorry to hear. Which type of scan, just curious. Carbo is a bit harsh, just be prepared. But it's a big gun.
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Southern, I too am ILC and it seems I have omentum stranding. The ER Dr did an immediate parecentesis and drained off 4 liters of fluid which astounded me! He said there was more but they could only do 4 because of the potential for blood pressure dropping. Plus I was already so weak and lightheaded from all the laxatives and not eating...So I saw my old Onc on Friday who finally decided to check my belly, said oh yes there is more fluid in there and left it at that.
By late Saturday I was already bloating again so off to the ER again. This time I went straight in, they did the procedure again, 4 more liters!!! I feel a lot better now and can finally eat somewhat, walk easier. The ER guy was so great, just so compassionate and decisive about the next steps. He immediately set me up with a gastro consult and new GP so I can do same day out patient visits. He also said I should have never been subjected to the misery and long wait of going to the ER, I should of been referred to a gastro immediately......I agree. Unfortunately I have never been a cancer patient before. How was I supposed to know what was up or where to go? After trying to call my old office several times stressing how bad things were I was continually advised to take more laxatives or call the ER....
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I probably don't really want to know but how to they drain the fluid. Please tell me it's not the same as when they pumped my stomach
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Artist - this ER doctor sounds very caring and so on top of it - refreshing after your previous experiences. I'm also very interested on how they drain the ascites. I wasn't sure if they can keep doing the parecentesis procedure? I know in the past I've read some ladies have had a stent inserted to drain the ascites themselves at home. I'm starting Halaven on Thursday and hoping this chemo can help my ascites too. Please keep us posted!
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I had my ascites removed 9 times 2 years ago when I was at my worst. They do an ultrasound at the same time. They look for where the fluid is in the abdominal cavity and follow what the ultrasound shows. I always had mine done from the right side. I would turn my head so as not to see the very long needle they insert into the abdominal cavity, keeping away from any organs. It's all hooked up to a pump system that pulls the fluid out. They fill liter bottles and switch out each one as it fills. Sometimes the fluid is tested. Mine was filled with "floating strands of cancer cells" until the chemo kicked in and fought it back. It's not terrible. One of the things I discovered is that with a lot of fluid in the abdominal area, your organs are kind of floating. When they remove the fluid everything is kind of suspended again. I would feel internally bruised which gradually went away. The most I had removed at one time was 7 liters. Once the Navelbine kicked in the ascites gradually quit. Good luck to anyone having the procedure. It's such a relief to have the fluid removed that you are willing to put up with the rest. I suggest having a wheel chair handy so you don't have to walk out after the procedure. Love and hugs, Cathy
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The first time I had the procedure it was very uncomfortable and for a minute or so painful. Afterwards my Onc said it should not be. The second time I went in I told the new ER doctor about my first experience and he was very surprised I experienced pain. This time he used some kind of lidocaine? swab to numb the whole area and put a mild pain med in my IV. He also said unlike the other doc he used a catheter needle that had a very fine thread to do the job. Sure enough it was absolutely painless.He was a true prince. I would recommend the wheelchair ride too as I felt pretty wiped out. But I had also been through all the other crud before so was fairly depleted anyway. I know they can install a drain to do at home but am hoping that new treatment will kick this to the curb. It is misery.
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How do you know you have ascites that need to be drained ? It was mentioned that I had some last year when I had scans but never mentioned again. I'm always bloated. Just figured it's a bit of mid life fat and the dam cancer.
I woke up with the worst flank pain ever. This is on the side that doesn't have the tube. Once I sit up or get up the pain slowly goes away . Anyone have any ideas? I have never had a kidney stone so not sure if this could be one. I am freaking out thinking I'll end up with a tube on both sides. My DH knows the first thing I want done when I die is for someone to pull that tube out.
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Diana, I was so over bloated with a hard belly and felt constantly constipated even though that isn't the problem. It became so uncomfortable I could hardly sit up straight and could not eat at all. I just laid down all day until I could not stand it anymore and went to the ER. Luckily he diagnosed my problem right away. What is the tube for if I may ask?
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The cancer is crushing my urerter so urine can't get from my kidney to my bladder. The tube comes out my back and is connected to s bag strapped to my leg. It sucks! It has to be changed out every 6-8 weeks. Can't go swimming, take a bath, wear shorts etc... They have tried a stent twice and both times it has failed.
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Hello All! I saw the Physician's Assistant today. The next time I start having an abdominal flare, she wants me to call and they will get me into a CT scan to try to see what's going on. First time I felt like they were really listening. I told her every time I have a session, I lose 5 - 7 lbs. No chemo today. My absolute neutrophils were too low even though it's been 2 weeks since last treatment. I asked her if we could go ahead and switch me to Xeloda since I have 2 trips coming up. I want to feel strong enough to travel. We'll see!! Love and hugs to all of you. Hope you are all comfortable. Cathy
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Hi Cathy - so glad they listened to you today! We know our bodies better than they do.
I did my first Halaven infusion today. Really was sad. I haven't had a IV chemo infusion in 2 years and I just am really not happy to be returning to it. I'll have my pity party for a day or two, then buck it up. I'm OK tonight due to premeds, but somewhat on edge on what tomorrow and the weekend will bring. Oral chemo was so much better. Seeming to mourn losing my hair for 3rd time.
Cathy - I hope you can go on Xeloda. I was on it for about 15 months before progression. My side effects on Xeloda were waves of nausea mostly after dinner (should have just used preventive meds daily) and then I got HFS about 9 months in. Hands and feet did get very sore. I would go back on it over IV chemo any day. Kept my hair too on Xeloda.
Praying for us all and big hugs too!
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Dianarose, Thats sound SO miserable. I'm so sorry you have to endure that. Will it ever get to be removed or is it permanent?
Cathy, When you have the procedure done do you get any after pain around the abdominal muscles or nausea? I just had the procedure again yesterday and haven't moved off the couch.
I start Abraxane On Monday and my Onc says it should help tremendously. I am praying as this is very miserable...
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Artistatheart, I usually just felt internally bruised for a few days. I found a supportive pillow over or under my abdomen help. It does get better. Have you weighed yourself? I dropped 14 lbs after 7 liter removal. That's a lot of weight to carry around in front of you. Dianarose, hope you are feeling ok. I've made it a whole week without a major flare. Sheri, I'm so sorry about having to go on Halaven. My hair thinned but wasn't too bad. Watch out for neuropathy. It can be pretty bad. I hope I get the switch to Xeloda.. Been on chemo most of the time since last fall. Love and hugs, Cathy
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been off all treatment for 2 1/2, weeks . Belly pain and lots of nausea. One kidney is draining 2-3 times more then the other. Scared to death that this is the end approaching .
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Oh Dianarose, I'm so very sorry!! Is your Dr. giving you any kind of hope? LOVE and HUGS, Cathy
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Wow - many of us are sure having too many issues right now - stupid cancer!! Dianarose - so wish your MO could give you something for your nausea and belly pain! I just want these doctors to not be so nonchalant about our suffering.
Cathy - your one week flare-free makes me happy. 😀
I had my 1st Halaven infusion on Thursday. By Friday night, I had a 100.6 fever. Took Tylenol and it went away. Felt bad yesterday - on couch all day. Still not feeling too well today. I'm thinking having my infusions on Thursdays is not so great, as I'll probably feel crappy all weekend each time.
Hugs to each of you!
Sheri
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This has been a tough week on everyone. Just wanted to wish you all a beginning of a better week. Following each of you with a heavy heart. Waiting on scan results today, that should have been in on Thursday, it got so messed up, stressed does not even come close to explain what's going on now. We'll be in touch. Hugs everyone.
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Had bad nausea, belly cramps, acid reflux and now diarrhea like water again . Is this part of belly mets or something else again. Don't even know what to do. I feel horrible !
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Hi Dianarose, So sorry you're miserable. I had an intestinal bug over the weekend. Felt different from my usual abdominal issues and my husband had It too. Similar symptoms to what you are having. Lasted 2 days. If you don't start feeling better, tell your Doctor. Hang in there. We all care so much about you!! LOVE, Cathy
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