peritoneal carcinomatosis
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Hi all,
Heading for my 15th infusion of Taxol this morning. At least I hope so. Hospital called yesterday for a repeat blood draw of potassium which is off the charts. No news is good news so I assume we will go ahead with tx today.
Wishing you all a good day and hugs to all!
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Hope all goes well for your infusion today Linda. Was your potassium too high or low? Mine often goes crazy, if I don't eat enough it drops too low and I need to have supplements for it. Last blood check it was slightly too high and I didn't think I had been eating that many potassium rich foods.
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Hello Everyone. Spent yesterday with acid reflux which is unusual for me since I take Nexium. The gas pains started while I was waiting to see the Assistant yesterday. She was an hour behind. By the time I got in to see her, it was kind of a whirlwind visit. We talked about the breakdown in office communications and how it could be better. She had noticed the problems too. I then went and had a filling replaced at the dentist wherein she tried to stand me on my head. So much fun when you're having abdominal issues. Made it through and see G.I. Doc on Friday. I'm supposed to get a call from the Doctor's office for an appointment about the genetic testing bill. Abdominal pain still here today but not as bad as usual (so far anyway). Artist, I "saw" a squirrel run through my house a couple of years ago. When I told my oncologist he said, "Too much steroid!!" So he lowered my dose by 10% I thought it was so funny that he didn't question my sanity, just my medications. He was right, thank goodness! lol Kimchee, my exercise program is all about listening to music and dancing around the house. Not only do I get moving but the music lifts my spirit as well. Thinking of you all and what you are going through with your treatments. My heart goes out to each and every one of you. HUGS. Cathy
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LOL! Retro, the steroid "crash" is the pits. Had my infusion Monday, was up half the night. Ok and energetic on Tuesday. Today overwhelming fatigue and the neuropathy is back to severe. I was wobbling on the cane all day and my arms/hands feel half dead. Very discouraging. I don't want to change treatment already as my TM's took a dive but I guess it is all about the next scan.......Wish I could do one normal thing like camping or a concert or shopping. I miss my life.
Southern, Seems like the only suggestion my Onc has is to lower or stop the meds.....My taste buds are going rogue again too. Bummed as I was finally enjoying eating again.
Dianarose, Best wishes with the X!
Hope the infusion happens Linda....
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Blume - yes I had my infusion and was glad I could. My potassium was way too high, it's not the first time. They gave me a list of foods to go easy on but I don't eat much of them anyway and I take no supplements whatsoever with chemo so no chance of getting potassium there. I really wonder why it happens.
Retro - hope you feel better and be careful of those squirrels lol!
Artist - Weird I didn't get my steroid high the last two times, I'm like a drug addict, give me more! I kind of miss it. Real bummer about your neuropathy. Can they give you meds for it? Yay on TMs!
Dianarose - good luck with X!
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Linda it really is weird with the potassium. I was curious after hearing several MBCers say their potassium levels were out. When mine was constantly low earlier this year I started tracking how much I was eating. It just seemed impossible to get too much, so I was amazed too when mine was high on the last blood test.
Hope everyone is having a good day, hugs to you all xxxx
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Linda and Blume - I am very curious as to what your MOs think about what is causing too high of potassium. When I was on a feeding tube, they couldn't keep my potassium high enough. Always low - ended up in the hospital a few times for dehydration and for potassium being too low. I finally started taking liquid potassium that had to go through the feeding tube a few times a day. Ugh.
Artist - that d*#% neuropathy! Can the Abraxane dose be lowered? I'm glad your TMs are down, which is always good news.
Cathy - hope your stomach continues to feel better today.
Take care all - praying for all of us!0 -
Linda, the steroid energy is kind of nice the first day but the crash is so yucky. Felt better today. Made myself get out and walk around on the cane while doing a little shopping/browsing. Anything to MOVE. It was exhausting but felt good to be out. DH wanted to go out to dinner as he is sick of cooking most nights so we did. I just can't eat that much so kind of a waste of money on me unless I finish it for lunch tomorrow!
My Onc has not said anything about something to help besides delayed or lowered dose but will as him Monday.
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I love my G.I. doctor. She is amazing. when I first saw her 3 years ago, she had just finished researching lobular breast cancer because her mother-in-law had just been diagnosed. She recognized my symptoms as cancer spread and worked with me until we got it proven--took a few months and a change in oncologists. She hadn't wanted to see me again because she felt the only thing that would truly help me at that point was cancer treatment. She is now going to see me on an ongoing basis to try to help keep my symptoms under control. There is a medication called Sandostatin that cuts down on the amount of secretions your small bowel puts out (which adds to the fullness feeling). It also helps with the runs! It is usually given by shots into the abdomen 3x a day and is usually given in the hospital. She is going to see if my insurance will approve me giving myself the injections. She also told me to double up on the Nexium as it not only helps with reflux but also cuts down on the amount of fluid produced by your stomach. I really feel like between my oncologist and her help that I'm really in good hands. I have to keep taking Reglan also because it's about the only drug that speeds up your system. The Buscopan that Blume told me about is sold in America as Anacin.. Who knew??? So you might check with your docs about that too. It's possible that here the docs won't want us taking the extra aspirin. But if couldn't find something else, I would certainly consider it. As we all know, Reglan can have some nasty ticking side effects if used long - term which for most of us is a way of life. Love you all and hope you feel well enough to have an enjoyable weekend. I will keep you updated on the new medication (hopefully I can get it). By the way she too thinks that these episodes are partial bowel blockages--just not bad enough that I end up in the hospital. Once was enough. Cathy
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Cathy, I was so happy to read your post, your GI doc sounds perfect, it sounds like you have a great team behind you now which always helps!
Hope everyone is having a good weekend, love and hugs to you all xxxx
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Cathy - glad you had such a great appointment! I love my gastroenterologist. I only go about annually now but he says to call him whenever I need him and he will work me in. I find that as much as I love my MO, he really isn't familiar with stomach stuff - seems we need a specialist for everything! I think you will be able to manage your digestive issues much better. Keep us updated on how well your meds are working - I know we all appreciate the sharing of info.
On a different subject: Anybody watching college football today? I really like it more than pro, as the games are much more exciting to me. What are some of everyone's passions?
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Sheri, I love 60's music especially the Beatles. I've been to Liverpool twice and London once. Walked the Abbey Road crosswalk. I love old movies especially Alfred Hitchcock's Rear Window and Shadow of a Doubt. I love watching movies with my husband and youngest daughter because they get my sense of humor! I treasure every day I get with them and my 2 step-children who unfortunately don't live as close to us as I would like. Didn't feel too well when I went home for a visit but I had a wonderful time seeing my brothers and sisters--6 of us left out of 9. I'm the "baby" at 63. October 26th is the big "When I'm 64" birthday. I always laugh at the line, "yours sincerely, wasting away." I know we all have times when that's how we feel. Onward and upward. Hope you are listening to great music and watching wonderful shows. We also live by Puget Sound so I get out and enjoy the wonderful, beautiful area. I love antiquing and get my exercise by dancing whenever I get a chance--even if it's dancing down the aisle of the grocery store. Love you all. Cathy
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Cathy your post made me smile talking about Liverpool and Abbey Road - I was a real Beatle maniac as a teenager, always travelling to Liverpool and London, attending Beatles conventions, going to the Cavern (this was in the 70's and early 80's, sadly not the 60's!!). Of course in England I only lived about 90 miles from Liverpool so it was an easy journey for me. You just made me think of those days, happy times!!!!
Southern, my passions are generally photography and travel, which is also work related as I make my living through stock photography. Plus I love walking, nature and cycling when I feel up to it. One thing that keeps me going sometimes with this diagnosis is planning travel trips.
Hope everyone is enjoying the weekend. It is very autumnal (fall) here, just been for a little walk in the forest, the colours are getting beautiful and there is so much fungi this year. Today is a good day, I almost feel normal healthy!!!
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Cathy hope you feel better. So interesting to know about the different meds. So many MO's have no idea about a/t. All they know is the latest thing they read. Dani had a 2nd bout where she saw blood in the urine, was not terrible, but the first time around she was at a different Onco and ended up going to the ER, weakness, low e/t...that NP said she did not know what to do, this new place, Memorial we are talking about, just happened last week, same phone call and new Onco of course, NP calls back and says she never heard of it b4, can u imagine, and DD's life is in their hands (kinda), anyway they did order BT and urine culture, BT thankfully came back fine, urine still waiting on it, but at least she's not bleeding. Ridiculous. But glad things are holding up.
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hello to everyone. Back from my amazing adventure of Canada and Alaska and it was everything I hoped it would be. So beautiful and stunning views everywhere. Had a ct scan last week and saw my onc today to discuss the next step. Everything looks the same as it did 3 months ago so that's good news. So my onc wants to start me on letrozole and zoladex. Has anyone had these drugs and r willing to share their experiences. I am a bit worried about hormonal drugs as when i tried tamoxifen 3 years ago it made me have suicidal thoughts. I hope everyone is going okay and i will catch up with all the posts i've missed over the next few days. Hugs to everyone from down under.
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Mommall - Blood in urine could be an SE - has Dani started a new med lately?
Aussiemumma - Welcome Back! Glad you enjoyed your trip and congrats on stable scan. I can't comment about Zoladex but I was on Letrozole for over 3 years. Joint pain and hot flashes were my main SEs otherwise a walk in the park compared to chemo. Very different for me than Tamoxifen, was only on it for 5 short months but it did affect me psychologically as well, hard to explain but didn't feel like the same person.
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Ausiemuma I think LindaE nailed it.
LindaE how are things with you? Are you feeling better? And no she's not on any new meds.Thanks As a matter of fact it just happened again, I'll repost from other thread.
Well she's right now at the ER, i was called for emergency baby sittiing. Blood in the urine, clots... She hasn't seen a doc yet. I just sent a message in the portal to the docs office. When we called docs # and it says press 0 for emergency, well anyway, the doc on call didn't call back, receptionist said he's behind calls. I wrote on the portal, that when a patient is bleeding and calls the emergency # a doc should call back, and if he can't he should have someone call back. She headed there not waiting for their call back, that's for sure. Maybe it's a kidney stone, who knows...I hope it's not more tumors...I wrote it's incompetent of them. So if this is messed up she might start to get to another wagon earlier than expected. In the trials, they don't allow any other care, so if she will need something she's off it. Getting ready for a long night.
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Aw Mommall - sorry to hear about Dani. They have to get to the bottom of this, I hope and pray it's something trivial. I'm ok, the nausea and vomiting still under control, have been eating and I think my weight has somewhat stabilized. I just wish I had more energy/stamina. Should get results of CT scan on Friday so keeping my fingers and toes crossed. If progression, MO wants me to change from Taxol to Epirubicin. Haven't seen many, or any in fact, on this chemo. Anybody tried it, please step up.
Wishing us all a good day.
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Blume, so jealous you live close enough you can go whenever you want!! LOL You should go back to Liverpool.. They have a Magical Mystery Tour bus which is affiliated with the Cavern Club and Beatles tour of Liverpool in a black cab where you get to see where Eleanor Rigby is buried, where John and Paul first met, tour Penny Lane, a Beatles museum on the wharf. Through the National Heritage you can tour John and Paul's childhood homes. FABULOUS!! Go relive your childhood. It's life-affirming! Cathy
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By the way, I feel lousy right now. I don't want to talk about it!! LOL HUGS TO ALL, Cathy
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I just had my 7th IV infusion of Halaven today. My TMs went down 41 points (about 6%) for this 3 week cycle. I was hoping for more but at least it's going in the right direction. Neuropathy not an issue yet but doc says it can become an issue, so will be watching out for it.
Aussie - Welcome back! Sounds like you had a fantastic time. I was on Ibrance with Letrozole for only about 4 months. Wasn't bad although I'm not sure what side effects related to which drug. My worst issue was low WBC count, caused by the Ibrance.
Mom - truly praying that Dani is doing better today - that had to be scary for you both. Please let us know.
Linda - hoping for news of CT scan stability. Never heard of that E drug, which is interesting. Usually these doctors seem to use all the same drugs so I'm curious as to what your MO says about this drug.
Blume - love your passions, they certainly go hand-in-hand. Wish I was a better photographer but I just use my iPhone- haha.
Hang in there, Cathy. Praying things turn around for you quickly.
Take care all - hugs to each of you! 💕
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Awww Cathy, sorry to hear you are feeling under the weather. But sounds like you made a great connection with the GI doc. Thank for the info on the others meds that can help, very interesting. I LOVE classic movies too! I have quite a collection going. A couple of my favorites are Bette Davis and Olivia DeHaviland. I also love to make jewelry and going to concerts.
Southern, I watch college football sometimes with the DH but mostly NFL. Lately I have become a huge golf tourney fan! Watch for that neuropathy as once it gets a hold it seems to settle in heavily at least in my case...
Blume, I love photography too. Oh to feel almost normal healthy! If this severe neuropathy would just melt......
Welcome back Aussie, so glad you had a great trip! Great news on the scan! Letrozole, I just had low WBC and muscle aches.
Mom, Hope they get to the bottom of Dani's symptoms quickly..
Linda, I have never heard of that one either. Best wishes on the CT!
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Aussiemumma so pleased you had a great trip, Canada does look stunning. Fantastic news about the stable scan too! I take Letrozole now along with Ibrance. SEs are minimal, some aches which mostly go away when I get up and get moving. I get nausea a lot but I think this is either the Ibrance or the mets, not sure which yet, but I don't think it is the letrozole.
Momallthetime how is Dani doing? Sending positive thoughts your way.
Linda I had Epirubicin as part of my original treatment 8 years ago, so it was dose dense. The full treatment was FEC - fluorouracil (5FU), epirubicin, cyclophosphamide. The epirubicin was my most hated part of this, bright red and the smell just made my stomach churn. The smell carried over and stuck with me for a few days, every time I urinated or sweated I could smell it and felt ill. Other than that, I had the usual nausea, but that was manageable with emend. But as I say, it was dose dense chemo and part of a cocktail, so the side effects for you could be minimal - just beware of the smell!
Cathy you are so right about going back to Liverpool, I should really do that, it would be such fun! Its a really cool city too and the people there are so friendly. Sorry to hear you were feeling bad, hope thats improving now for you.
Southern great your TMs are going in the right direction, hope that continues and the neuropathy stays away for you.
Artist how is the neuropathy, hoping it is improving for you?
Love to everyone else too, hope all are having a good day!
After a few days of feeling really good I have my morning nausea back again. I still can't decide if it is the Ibrance, letrozole or the mets on my colon, it just seems to happen randomly. We just booked flights to go to Italy next wednesday for 14 days so hoping it improves again before then.
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Thank you Blume for info on chemo. Have a fantastic trip to Italy!
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LindaE ask her how well does she think you'd be able to handle it.
Blume 14 days to Italy, that's a good medicine!
Dani came home late last night, she was resting ok today. She went through a major ordeal and nightmare. All this, because Memorial Sloan in NYC, THE place to go for Cancer Center had no clue how to take care of her. With an ER similar to what one would find in a 3rd World Country. Docs that are rushed, and don't have a clue about emergencies.
She came in with clots when she was able to pass some minimum urine, and in extreme pain. Then she could not pass at all. They sent her home in the middle of the night, because they said the CT would only open up at 8 AM. She went home and half hr late she woke me up saying she's gonna explode and in so much pain. Back we went, no scan till 2pm. Then, all hell broke loose. They saw she had a large Hematoma, so as soon as she got back to the room, the urologist team arrived, and they had to irrigate. It's a crazy thing,a catheter go in with 2 like faucets, one for saline to go in, the other for the clotted blood to come out. This went on till the morning, with a nurse coming in every 5 mins to make sure she gets the saline in, so the blood does not get clotted. Dani was in so much pain, and the place ignored her. She kept saying I'm not just numbers, the HGB was not at a dangerous level, so they did not take her seriously, then when it fell below 7, of course they ordered blood stat.
She did not eat for over 2 days. Not a thing. They did not want her to eat, not knowing when and what surgery she would need. She drank a bit the first day, nothing the 2nd day. She had the procedure in the pm, was in the surgery dept. They were successful. They Cauterized the blood vessels and sent a 1cm lesion for biopsy. They have no idea if it's malignant or not. It will take about a week.
There was attitude galore over there. We fired a doctor at the ER, he did not introduce himself, and just wanted to go straight to touching her belly, (because he needed to fill out paperwork that he saw her b4 CT), she's like YOU are NOT touching me, we called adm. but got a patient rep, she understood, spoke to him, then told us she understands but it needs to be done otherwise WE will delay tx, I said YOU are not threatening me right?? We know we have a right to refuse tx blah blah, she was like hmm sure, I did not mean that, let's just 2 mins later another doc appeared. Yep, and many more such idiocracies.In the meantime she is off treatment. Trial Onco called, there was progression of the liver in the CT that they took for the bladder, and the markers and enzymes are going up so it's in D's best interest to stop the tx. Yeah, I've been telling her, hey the #s are not going in the right direction.
Now, we are hoping former Onco should respond and see what could be done. D is in no mood to get chemo, which the trial doc said she'd probably get now, I mentioned Immunotherapy Onco said they are looking which trial would accommodate her. And she really can't afford to be off a/t. We are just floating, waiting for a miracle.
Thanks so much for the support.
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mom I am so so sorry Dani had to go through that and you too, what a dreadful experience for you both. This just shouldn't happen, is there somewhere you can complain?
Hoping they come up with a good trial for Dani real quick. Love and hugs to you both
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Hello out there everyone . I have a question , I have bone mets with peritoneal carcinomatosis for about a year now . I started on Ibrance 125 and Faslodex . I was doing good for awhile till my wbc started get low so doctor put on 100 Ibrance ,it was all good for about amonth till my TM started going up .Last month he put back on 125 Ibrance for two weeks to see how things will go . So yesterday I went for blood work and TM are still going up ,but I feel great ! My stomach feels like its going down and I feel very comfortable . So he said lets stay on the Ibrance for 3 more weeks since I feel good and see what happens . So my question is has this happed to anybody else out there ? Doc says if I'm feeling good he wont go by TM markers could be something else making them go up . Thank you for your time and God Bless
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Oh Mom! What a miserable experience for you and Dani. When I was hospitalized for a partial bowel blockage, I went through the ER. They left me sitting in the waiting room throwing up for 2 and 1/2 hours. It makes no sense to me the way people are treated when in a crisis situation. Hope you find a great trial that works well. Kimchee, if you feel great and more comfortable, I would stick with the Ibrance at least for the next 3 weeks. Hoping your TM's go back down. I'm just starting to feel better after a bad week. Waiting for approval for the new medications. LOVE and HUGS, Cathy
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Got my results today. Not good news - progression to liver and peritoneal carcinomatosis. Moving on to Epirubicin chemo as of next week.
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Mom - what a horrible thing to happen to Dani in the ER. That is really just unacceptable! I can't stand going to the ER, as I don't think I have ever had a decent experience there. They seem to forget you are there because you have to be, not because you want to be. I pray that Dani is able to get on a suitable treatment very soon.
Kimchee, I think staying on Ibrance for 3 more weeks would not be detrimental and your MO could definitely take another look at your TMs then. My MO looks at my TM trends, so he's not too quick to dismiss a current treatment that I'm on. If I have a couple of cycles of increasing TMs, we then do a CT scan to see what is going on. (Not sure of your experience but my TMs have historically been a good indicator of progression.)
Linda, so sorry to hear about your progression. Will pray this next chemo is successful for you.
Hugs to all tonight.
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