peritoneal carcinomatosis
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Good morning all! I’m still waiting for a call for my CT scan. I know it takes a few days to get insurance approval for the scan and then they will call to schedule.
I did talk to my MO’s office on Friday about what I need them to send to Mayo. I do though need to do the CT scan first, so they can include that info in the records they send. Mayo won’t schedule an appointment until they have received the records and reviewed them. I’m hoping to be able to get an appointment late August. My younger son is going off to his freshman year of college mid-August, so I’m quite busy until then anyway.
Jane, I was a “lazy blob” all weekend. Did not feel well as it was Days 3 & 4 of Halaven cycle, which are the worst. Had no energy and no appetite. This morning I’m feeling a bit better, but still not great.
Pat, I’m not knowledgeable on clinical trials either. Not sure how you even know which one would be a good fit. I’m thinking not many would accept me, as I have been heavily treated at this point.
Waving hello to everyone else this morning. Wishing you each a good day! 💕
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Hi Jane. No news on the CT yet but it's summer here which translates to reduced procedures at the hospital. They're probably struggling to squeeze me in.
It will be interested to see if I end up going next week. It seems that every time I book time off work to relax at home I have ended up having to go in for a scan. Not complaining but it's a bit of a drag spending your vacation in a waiting room!
Happy Monday everyone. Pat
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Morning everyone! I had a great weekend. I got out and walked and walked with my Eurodrive rollator. It's bright red and made for tall people so I don't have to stoop. My legs are a bit wobbly these days. Monday started out great and then went into an episode at dinner time. I usually wake up with them. That's about 4 episodes since the 4th of July. Cancer must be ramping up. I do feel better this morning but afraid to eat anything. Hi Sheri. Good luck with scan and Mayo clinic. Hope you get the answers you need. Same for you, Pat, with your scan. I realized if you live in BC we aren't that far from each other as I'm north of Seattle. Hope you are enjoying the beautiful summer! So glad to see so many of us. You are all great company in our cancer battle. HUGS, Cathy
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Hi to all. I’m wondering if this is the right discussion group for my latest cancer development. I’ve been on the liver Mets group but but now looks like my lobular cancer has spread to my stomach. I’m currently in the hospital as I just had an urgent surgery Monday to put in a G and J feeding tube because my stomach stopped emptying. My oncologist sent it in the biopsies to get pathology reports but whatever happens I’m going to need to move on from my Ibrance /Faslodex treatment because I don’t absorb any medication taken orally anymore. I’m kind of sad because it was working well on my liver but evidently not working everywhere. Of course this will also be a major lifestyle change but I was so miserable with how eating made me feel that right now the idea of not eating isn’t even bothering me.
This thread was the closest I could find to my situation. If anyone is experiencing new things tomorrow I would appreciate any insight into dealing with my newest normal. I think it will hit me more when I get home .0 -
Liwi- sorry you are in need of this thread. Welcome to our little group. Glad you are getting a feedin tube. They let me go for four months on nothing but clear liquid. Suffered from malnutrition as well as all the other stuff going on. Most of us on this thread had Ibrance fail as well. Feel free to ask us questions. Hugs..
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Hi Liwi! I had something similar....turned out to be gastroparesis caused by cancer spread to the abdominal area. The way my Doc described it was that a layer of cancer cells blocked the electrical stimuli that tells your stomach to empty. After months of misery the chemo I was on finally broke through and my gut started working better. The chemo was Navelbine. Like most treatments, they work better for some than others but I figure I'm not the only one this drug must help so I always pass it on. I never had to be on a feeding tube....I kept to a no fiber diet and ate really small amounts to get by. I lost about 50 lbs. I just wish you the very best. We all know how miserable cancer in the abdominal area is. We all take it day by day and have hope there is a treatment that will really knock the cancer back, at least for awhile. HUGS, Cathy
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Oh Liwi - I totally get it. I had a j-tube for about 9 months due to a blocked duodenum (could not take anything orally) and finally had major stomach surgery to allow me to eat (no cancer was taken out.) Wish I would have had the option of surgery sooner, even though it was a very tough one. For me, the j-tube should have been a more temporary solution and we kept it for too long and it caused other issues, like low potassium and dehydration. Several hospital stays. After my experience, I would just say be your own best advocate and stay on top of the doctors to work towards a more permanent solution. I too lost a lot of weight and could never get my strength. (I was on IV chemo during that time.) The surgery was over 3 years ago, and I’m still here! I’ve been on several chemos/treatments - the two that worked the longest for me have been Xeloda and Halaven.
We are here to encourage and support you on this cancer path - welcome to our group. Please ask any questions you have and we will try to help.
Sending you a big hug today!
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Thanks Dianarose, Retrocath and Southernsurvivor. I really appreciate your support. My oncologist pushed for the feeding tube because she did not let me to get depleted. Also I couldn’t even keep clear liquids down for over 2 weeks. My understanding is that this is a temporary solution pending finding out the results of my pathology and an updated treatment plan. This was the first time I’ve been totally scared since my initial BC and then mets diagnosis.
I didn’t get a second opinion before starting my Ibrance treatment. I’m thinking this may be a good time to do it.
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Dianarose- Hi I'm so sorry to slightly change the subject I'm so super new to forums 😁. I've been searching for weeks to find someone with nephrostomy tube experience. I have had them since April and have to have them changed tommorrow and am so nervous.! Had a terrible experience with them being put in. Any advice? Thank you!
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My tn life- I used to get a shot to numb the area when they did the exchange but found the shot hurt worse. I will admit I hate the exchanges. I won’t lie it’s always painful but the exchange itself is quick. The prep takes forever. I do take a Xanax thirty minutes prior to the procedure. I also change the redo fix and tegaderms to clean my skin as it gets sore. I change my bags a couple times in between as well. Hubby does it. He’s better then the visiting nurse was. She no longer comes. What brand bag do you have? I go through Edge Park for the redi Fox and larger tegaderms. I get new bags right from Remington. They are expensive but my insurance reimburses a good chunk of it. Every thing you can do to keep infections at bay is good. I also fold the bag up so the nozzle isn’t digging in my leg. I’ve had them for almost two years and words can’t express how much I hate them. Without them we would die so I’m greatful they have them so we can live longer. Hugs to you my friend
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Dianarose- Thank you for the response! I'm not sure where I got my bags from, Egdgepark did not have the ones I need but I have Merit Medical brand. I wear sock like bands with inserts on my calves under my pants. I like them best I hated the Velcro strap things. I'm considering sewing some pockets on the out side of some pants but I know my tube will get snagged and boy does that hurt!! They are doing my exchange at the hospital so of course they say NPO after midnight and my appt is at 11am next day so I think part of my nerves is dying of thurst, its 105 here!!. Thank you for your honesty I hope they give me a nice cocktail and I sleep. I really hope to get them out some day but for now they are saving me to I also try to remember that. Thank you!
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my tn - they might give you some Versaid. Not sure if I spelled that right. It will help keep you calm. When is your exchange? Hubby changed out everything yesterday so he could wash my skin as it was sore. I tried the things with the pockets but would always slide down my leg. I also have them cut the tubes so they aren’t so long. I could have wrapped the tubes around me three times lol. Do you have one or two? Do you still have to pee the normal way too. I do and have absolutely no bladder control anymore. I hike and say I pee 3 ways. The part I hate is it restricts what clothes you can wear. No more shorts or anything above the knees. Do you have lobular cancer? Seems like most with belly Mets do. What treatment are you on? Hope you are having a good day. Diana
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Dianarose- I had my exchange today and it went well. Hurt but not too bad I'm still hurting it feels kind of like minstrol cramps. My husband is good at changing my bandages thankfully because they get loose in the heat or at night if I sweat then get sore. I do occasionally pee the normal way and I have both sides with tubes. I accidentally kinked my tube the other day on one side and went pee normal. My Dr says that's a good sign. But I have triple negative so unfortunately eventually the Halaven will stop working things will grow so it's too risky to remove tubes. We have talked radiation but the risks of scar tissue blocking my ureter is high so tubes stay in. I'm not sure what my next treatment will be but soon because possible skin mets. What regime are you on? Are you able to go swimming? I hate not being able to swim and I agree about the shorts! Hope you have a good weekend.
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My Tn Life i'm glad your exchange is over with and that it went well . I am not familiar with nephrostomy tube's, what are they used for?I was released from the hospital last night. Had a bit of a rough time. One issue was that they just delivered my J tube feeding equipment but didn't have anyone come out to show me how to use it We had a teach at the hospital but it was overwhelming, information overload. My husband and I both thought we were told that there was going to be someone to help us with the first at home set up. When I found out there wasn't I pretty much had a melt down. Also turned out to be almost impossible to fill the liquid pain medication the doctor prescribed for me to use at home as no one had it. After trying several places I contacted the hospital and a doctor on duty sent in a prescription for Tylenol with Codeine which is at least a lbit stronger than regular Tylenol. But since it was late it had to go to a 24 hour pharmacy which was a 40 minute drive from home. The lesson I took away is don't ever let a hospital release you at 7pm without being sure you're going to have access your pain medications and the services you need.
Today's been better. It was quite helpful that I slept much better than I did in the hospital. At 8 am my husband went to a 2nd CVS pharmacy in town and the really helpful pharmacist said that while normally it would take until Wednesday to get the original prescription, she had a bottle of something similar on her shelf. She contacted the prescribing physician and got his OK to give me this slightly different formula hydrocodone prescription which is now working well. Also very late last night my husband figured out how to get the feeding equipment working so I was able to restart that process, and a home health nurse came out this afternoon to help us.
The cause of all my issues is still a bit of a mystery. I had an appointment with my oncologist around noon today so she could tell me what the pathology showed. I think I mentioned that was originally been treated for metastasis to the liver and that a recent colonoscopy identified lobular breast cancer on colon polyps. She feels like my clinical presentation of issues sounds like I have mets in my stomach but none of the biopsies show any and nothing is showing there on a CT scan. I know it is frequently challenging to find lobular cancer on scans. Until all this happened we believed my treatment of Faslodex/Ibrance was working well because the Mets in the liver have, after 11 cycles, almost disappeared. The biopsy of recently discovered Colon mets has slightly different pathology than the liver Mets, still ER + 60%, but only minimally PR +. My biopsy last year was strongly ER and PR positive, very similar to the cancer in my original diagnosis in 2014. When I left her office the plan was that she was going to talk to the gastroenterologist, see if you thought we should wait and see if my stomach issue started getting better, or get going quickly with a new IV (because I can't absorb pills) cancer treatment protocol. As of now she hasn't called so I'm thinking they haven't talked yet.
The chemo she seems to be favoring is Doxil. Has anyone had it? I noticed several of you mentioned taking Halaven and I'm wondering if I should be asking her about that. Also do any of you have lobular mets?
Best wishes for a good weekend for all.
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Hi Liwi! Boy have you been through it the last few days. I can't help you with much of anything but tell you that quite a few of us have lobular mets causing our peritoneal and gastric cancer issues. I, too, am less PR positive than I used to be. I guess it's all part of the cancer mutating. It is really hard to find lobular cancer on scans. It tends to form in single file strands or webs. It was only recently that nodules showed up on a CT scan I had plus omentum thickening. My original peritoneal mets diagnosis was found testing the ascites I had built up in the abdominal area. Hope you keep your chin up. Sorry about your cancer battle but very glad you found us. HUGS, Cathy p.s. I recently had something similar happen with a CVS pharmacist. She wouldn't let me leave until she found something for my gastric episodes. They didn't have exactly what my doctor wanted but she got something similar approved. The meds have worked very well for me. A good pharmacist is irreplaceable!
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Liwi - just a quick note before I head to bed. So sorry about the feeding tube and med issues. It’s a whole new set of problems when you can’t swallow pills, I do remember.
My cancer is lobular and I will say it was hard to find my stomach mets. My first two endoscopies in 2014 showed no cancer in the biopsies even though my duodenum was 100% blocked. I couldn’t eat or drink, so it seemed to me something was clearly very wrong and was more than “inflammation.” I ended up going to Mayo and they did more of a deep dive endoscopy and found the mets in the abdominal wall. CT scans don’t really show the whole picture but mine does at least show some of the issues.
Also, Doxil is one chemo that I haven’t had yet but is on my list. Good possibility that I may be changing chemos in the next few weeks as it appears Halaven may be failing me. I meet with my MO next week to discuss my CT scan I had on Wednesday. Halaven has worked for me for one year and has been doable. I would highly recommend it and I’m really hoping I can stay on it longer. Just my experience, as I know we all get different side effects.
I wish for you and My TN Life a non-eventful and peaceful weekend - you both deserve it!
Hugs to all tonight,
Southern
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hi my tan
I also wear nephrostomy tubes. Like Dianarose , absolutely hate them but it’s so comforting to know there are others out there that I can talk to and that you nderstand about the wretched tubes
I am kind of new to this post since finding out about my metastasis to the peritoneum in February.
Last week I tried a procedure to insert the tubes internally so that my bags could be eliminated. That failed miserably and now back to my little friends. So far this has been the worst SE of my lobular breast cancer.
Much love
Marina
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My tn - you can still go swimming. Order some really large tegaderms from Edgepark. Cover the stay fix really good so no water can get in and take off your bags and cap them off. Where there’s a will there’s a way.
Marina- sorry the internal tubes failed. It did me twice so now I won’t let them do it again. Not worth the pain. Glad your exchange went well. Sucks we have to do it every six weeks.
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HinDiana Rose
Wow! I didn’t know I could go swimming. This is fab news. Can we post pics here? I want to see how you fold your bags. Thanks so much for this great piece of news
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Marina- fold it up so the nozzle is straight up an not digging in your leg. Plus it’s less plastic on your leg.0 -
I’ve gotten more adapted to my feeding tube over the last few days. Even went to a few medical appointments with the feeding pump and food in the backpack the gave me. Tomorrow I’m hoping to start walking outside a bit in the morning. My oncologist is setting things in motion to get me started on Doxil quickly. On one hand I wanted to get a second opinion on the best next line of treatment. On the other I feel some urgency to get started and go for 2nd opinion for if/when it stops working. It seems like a lot of the treatment selection process is a bit of an experimentation process and so individual as to what works for who.0 -
Liwi - sounds like you are adjusting quite well. Good idea if you can walk and keep up your strength. That can be difficult to do. Are you on the feeding 24/7? I started out that way and then got to where I didn't have to constantly run the liquid nutrition through - would be off about 8 hours during the day. Was nice not to have to take the portable pump with me everywhere.
Well, not a great day for me today. My CT scan results showed progression. Lots of new large lymph nodes since Feb scan - biggest was 4.7 x 2.8cm - but several larger ones. I feel like my cancer just blew up! Has anyone had such large lymph nodes?
So, I’m off Halaven. Not starting something new yet as I’m trying to get an appointment at Mayo in MN. Med records were faxed there today. Then they take 1-3 bus days to review your file and get back to you. This next week was my chemo off-week anyway but I’m hoping I can get in soon. I think my cancer will go haywire if I’m not on something!
Hope you ladies are faring better. Look forward to seeing updates from everyone. Cathy - let us know how the trial is going.
Hugs, Sheri
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Hey Sheri! Just so sorry for the progression. Glad you are getting a 2nd opinion. Hope they come up with some good answers for you. I've been on the off 2 weeks and start up again next Wednesday and then testing soon after to see how I'm doing. One thing I know for sure is that something is active in my gut. More episodes than usual but not as severe and I have suddenly gained 6 lbs in the last few days. Just reaching the point where I feel uncomfortable. Amazing how it just starts to build and then suddenly you are really full and very big. Tomorrow is my daughter's birthday...can't believe she is 37. Where has the time gone?? Trying to stay positive and upbeat for her. Just feeling tired, I think. Liwi, Seems like you are hitting your stride and learning to handle the changes in your life. I have not had to deal with a feeding tube. I'm just amazed at how resilient we are and glad you are doing better. Good luck getting that 2nd opinion. Glad we still have summer. I'm not ready to give it up and it's going by much too fast!!! HUGS, Cathy
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Sheri I am sorry about your progression and hope there is a good option for you with minimal side effects.
I really appreciate yout information about your experience with the feeding tube. They weren’t real clear on whether/how I can progress off the 24/7 cycle. Didn’t you need to advocate for that change? I’d like to be moving in that direction.
Ive gotten mixed input on whether can only have ice chips or can drink sips of something, for example clear broth, at this point. The hospital discharge said only ice chips but that was a week ago. My oncologist and primary care doctors seemed to think I am ok to drink but the gastroenterologist works through the home nurse to respond to questions, at least according to his front office staff. It’s kind of irritating that I can’t just leave a message and get a response.
Well that’s my rant for the night. Otherwise doing ok, still sleeping a lot.
Cathy thanks for your support. My daughter recently turned 32 and I also can’t believe how quickly the time went by. She is going take off a couple of days next week to be with me and give my husband a break.
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Hi all - thanks for your support. I heard from Mayo yesterday that the first available appointment is Thursday, Aug 23rd. So, I'm going then. Mayo wouldn't schedule anything further until they see me, which is frustrating as I wanted them to at least schedule a biopsy procedure. It's a 3 1/2 hour drive from my parents house to Mayo, so I'm thinking we will have to come back the following week. In the meantime, I'll still be off chemo. It's stressful to be thinking that the cancer is running amok while I'm waiting to get a 2nd opinion!
Liwi, I had 2 tubes. One they called a gastric outlet tube, which emptied anything in my stomach, like bile, which prevented me from vomiting as nothing would go through my blocked duodenum. This also allowed me to drink water to quench my thirst, but it would immediately come out the gastric tube into an attached plastic bag. The problem was that I could never quench my thirst and I was constantly trying. I was so thirsty as nothing would be absorbed. The other tube was a j tube that was threaded through my blocked duodenum for the liquid nutrition feeding. I had to have a certain amount of nutrition in a day based on my weight. We started out at a lower volume per hour and then increased the volume slowly. It took a little bit just for me to get up to the required volume. The pump company helped me work up to be able to cap off the feeding for an hour or two. Then I worked up to several hours eventually. It was a process snd honestly not easy for me, although I was in a very weakened state at the time I got the tubes.
Hang in there ladies! Tonight I'm saying a prayer for all of us. 💕💕💕.
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Boy do I have a busy week coming up. Today is my only off day. I have doctor appointments every day plus dentist. I just feel so laid back after having 2 weeks off.. Hard to get back in the race. Gut is very full but no pain yet. I'm going to put off another paracentisis for as long as possible. I check in a few times every day to keep up on each and every one of you. I feel like you are not only friends but practically part of my family! You lift my spirits when you are doing well and it breaks my heart when you're having a bad time. I'm with you in spirit every step of the way. Hope you can feel my love lifting you up. Hang in there! Johnny, worried about you. Let us know how you are doing. LOVE and HUGS, Cathy
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Hi fellow belly metsters. I have a question about an odd symptom. Wondering if any of you have experienced this. Every now and then I get small welts on my abdomen on the side where the mets run along my peritoneum. (This morning they were concentrated around the site where the PleurX Catheter came out. I suspect I am inadvertently scratching myself and then notice the bumps. It looks like I have numerous flea bites but then, within an hour, they disappear. You would not know they were ever there. Sound familiar to anyone?
I seem to have such bizarre symptoms. They other “cool thing” is that the pleural mets have literally squashed the bottom half of my rib cage. It’s quite noticeable and the displacement of the ribs can easily be seen on a CT even to my untrained eye. I mentioned the sensation of being squeezed to my MO last fall. Turns out I actually am being squeezed! Thought I was going crazy when I first noticed it getting out of the shower. Thought “nah - not possible”. Apparently it is.
Just another day in the life... Sending wishes for a good week for all. I head back to work after a week off but at least it seems my newly radiated hip is mending nicely.
Hugs. Pat.
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Hi all-
Just checking in. Nothing really much going on with me (cancer-wise) while I wait for Mayo trip. Do feel fuller these past few weeks. I really think it’s the huge lymph nodes taking up space in my stomach. Trying not to eat my usual portion as I can get too full and then feel awful for a few hours.
My younger son is going off to college the weekend after next, so I’m busy getting stuff together. My older son is coming home next week from a summer job in Colorado. Hard to keep up with everything.
Cathy, I’m glad you had 2 weeks off. I’m sure you enjoyed the time but wish your stomach would cooperate knowing that you’re on vacation (feel the same way about mine!) I check in a lot too hoping to see updates from everyone. Y’all are definitely my support system and I need to hear from each of you that you are doing OK.
Pat, I too had 2 “bites” on my stomach the first week in July that I thought were mosquito bites. But they lasted about 11 -12days. Didn’t hurt or itch, but after several days, I thought it was weird as they weren’t going away. They didn’t get worse but also didn’t get better until about Day 9 or 10. So bizarre. Haven’t had that happen again so I really don’t know what they were. Glad your hip feels better and I hope your are feeling OK with your ribs being squished. That does sound a bit painful!
Take care of yourselves and let us know how each of you are feeling.
❤️ Sheri
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Hi Pat, I had spots on my face. Just as soon as they would start clearing up, I would get them again. I would wake up with them. At first I thought they were bites and then I though they were pimples. Nurses thought it looked like a rash. My skin has finally cleared up (knock on wood) so I'm hoping they are gone for good. Sheri, sorry you have to wait to get in to Mayo clinic. Nothing in our cancer battle seems to happen in a timely manner. Can't believe summer is almost over...makes me sad. Trying to get in lots of walks before our rainy season starts again in September. Most of the time I love our climate but have really needed the sunshine lately. I'm trying to plan a trip in the fall for a memorial for my sister who died last December from lymphoma. Miss her every day. LOVE and HUGS, Cathy
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I COULD USE SOME 'ATTABOYS' TODAY. I had blood tests yesterday plus tumor marker test. Went in to see physician's assistant before starting cycle IV of clinical trial. (part of the trial that I always see someone before I start each cycle). I saw "Mark" who I have seen occasionally over the years. He sat down, pulled up my test results and said that with my liver function tests going up, he assumes the cancer has spread to my liver. My tumor marker went up another 50 points. He told me there is nothing else they can do for me. That statistically, at this point, further chemo wouldn't make any difference. At first I got upset and then I got pissed. I spent the weekend walking neighborhood yard sales and a farmer's market and 3 days later he's telling me to go home and go on hospice!! I called the woman who heads clinical trials and told her what I thought of all this. So while I'm having chemo (Mark said off-handedly that I might as well one more time), the head of clinical trials had my doctor come over and talk to me. He said he understood where Mark was coming from but that he didn't agree with him. I have a paracentises on Friday and a CT scan next Thursday. The only person who is going to tell me it's time to give up is my doctor!! OMG What a day. Still coming down. HUGS, Cathy p.s. I finally heard those dreaded words from someone so they will never affect me so badly again. Next time, I'm ready!
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