peritoneal carcinomatosis
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Hi Cait - I’m so sorry about your frustrating hospital experience. I think many of us can relate. Per usual, it’s always worse on the weekends, as it seems nothing gets accomplished then. Glad you came back to us to vent as we completely understand and empathize. At this point, I personally would just wait it out until tomorrow and hopefully your paracentesis will be done. Ugh.
I can commiserate as I’m waiting to get that procedure done myself and getting more frustrated by the day. My stomach is so big - I look incredibly pregnant! I hate this feeling - it’s very uncomfortable and is making my back just ache. I’m hoping I get insurance approval and I can get it done prior to Wednesday, which is when I have my next Navelbine infusion.
Cathy, thank you for sharing your experience. It’s great when you get the truth from someone who has been through exactly what you are about to do. Although I love my MO, he doesn’t always know what something really is like to experience as he hasn’t done it himself. Happy to hear your report, even if you already “knew” the answer.
Barb - enjoy your time away. You deserve a break and I hope your trip is filled with many peaceful, beautiful moments.
Jane - I bet Australia is so beautiful with the springtime upon you! Do you get your “regular blood transfusion” due to anemia? Sorry, I may have missed what you said about that. Glad you got to visit your eldest daughter and her new house in Sydney. Fun get-away, for sure!
Pat - as Cathy said, enjoy, enjoy, enjoy! It’s crazy how things can change so quickly and I can tend to postpone things I want to do. My situation has changed a lot in the last few weeks that I did not anticipate. Going from a “normal” stomach to a very pregnant belly in a short time was definitely not on my radar. I’m praying that it gets better through intervention (paracentesis) or treatment, as I feel quite miserable! My slow growing cancer just seemed to explode in general over this past month. Decluttering? You are so smart to do that now. On my “To Do” list too.
Dianarose - you are always in my thoughts!
💕 Sheri
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Dearest Caitedidruns, That's the damndest thing (excuse the language} I've ever heard of. I've never heard that having parecentesis can open up other fluid pockets. They always have me turn on my side and other things to get the fluid to run to one area. I just don't know. At least you are someplace waiting to get some answers....I hope you get them in a timely manner. Often waiting and the unknown are the hardest part. Congratulations on feeling better and your treatment working. Don't let this other stuff get in the way of celebrating. Let us know what you find out. You have me very curious now. By the way, even though I'm pretty sure the clinical trial is working for me, I too, am still getting ascites. I'm hoping it's slowing down. One of the things they did for me back in 2015 at my ascites worst, my last removal of fluid, I got an I.V. of albumen. I don't exactly know how it works but it did help. I started with the ascites again in the last few months. I wish you much luck and please keep us posted! HUGS, Cathy
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hello ladies I am sorry for being away so long. I have some unfortunate news about my mother. She passed away this Thursday and I am devistated. I miss my mom so bad. I can’t believe she is gone and I can’t see her anymore. I was rubbing her feet when when passed wholeness my brother hold her hand. I at least brought her to Greece’s as she wished to see her family and I also got excepted excepted to the ice service which made my mom real happy. But witnessing my mother leave was heart braking.
Thank you to all the ladies here that helped with advice.
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Oh Johnny, I'm just so very sorry. I was afraid this was going to happen. You're Mom was only able to fight this long because of your love and care....I'm sure of that. It's been wonderful that you reached out to us on your mother's behalf. I only wish there would have been better treatments for your Mom. Sometimes it's just already too late. I hope you take solace in that you were there for your Mom when she needed you the most. Wrapping you in a big virtual hug, Cathy
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Dearest Johnny, my deepest sympathies to you, your brother and family. You have been in my thoughts and I was hoping for positive news. Cathy is so right - your devotion and deep love no doubt gave your Mum strength and the will to fight as long as she was able. You are an amazing Son. Bless you!! Please do not forget that we are always here for you. HUGE hugs. XOX
Caitedidruns - Sending you virtual healing hugs for speedy action and comfort. Why the worst happens on the weekend and in the middle of the night is a mystery.....
Sheri - you poor lady. How cruel that you are waiting, waiting, waiting.... I am hoping that as I type this post you are receiving the much needed paracentesis.
The American health system is so very different from our system in Australia.
Yes, Sheri, you remembered correctly, I have regular blood transfusions due to anemia. My bone marrow never recovered from the chemo I had 6 years ago so my Haemoglobin level is constantly low. Ohhhh to have more energy!
Has anyone heard from Dianarose? I have been wondering how she is travelling...? Hugs, hugs, hugs.
May we all have sunshine and smiles in our life,
Big hugs my lovely ladies,
Jane
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Johnny, I too am so very sorry to hear about your mother's passing. You were there with her throughout her difficult journey with her cancer having such compassion and care. Your Mom felt this and know that you really were a true gift to her. Sending my prayers and love to you and your family today.
💗 Sheri
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Hi all -
I had a paracentesis done today and they drained 2 liters. Honestly, my stomach is still big. I know there was a lot more fluid, although it had to be in different cavities. I definitely feel better though as my stomach isn’t so tight. I’m just praying for the ascites to now slow down and stop. Ugh.
Next up is Navelbine and echocardiogram on Wednesday.
How is everyone doing today? Cait, did you get your paracentesis?
Hugs to all, Sheri
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Johnny, I am also terribly sorry to hear about your mom. As others have said, please take comfort in knowing you did all you could and eased her burden right until the end. You are a very special son who showed great love for your mother who, I know, loved you equally in return. Take good care of yourself during this ver6 difficult time.
Sheri, while I am happy you have some relief, I wish there was some magic wand I could wave to make that fluid stop. I often wonder how things will go for me as my body also likes to make fluid. Lots of fluid!
As to the decluttering, it is more of an imperative than being smart. My house, which I share with my elderly mother, is FULL of stuff. She was into antiques and collecting plus we inherited “treasures” from her mom and my grandfather on my dad’s side. Add to this the depression era child syndrome and there is a complete unwillingness to throw anything out. It all has to find a “good home”. Driving me nuts but we are slowly making progress with only the occasional cross word. Sold a five gallon milk can today. Woo hoo! That was something huge!
Hugs all. Pat.
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Well Xeloda stopped working. Tumor marker started going up each cycle for a few months. I only got a year out of it. Sobummed out. Now I'm back to infusions. I feel so defeated. I did order cold caps and supposed to get them today. I have no idea about them so I hope they come with great instructions. I am a train wreck and very out of sorts. All I want to do is sleep. It all goes away then. All this stuff they claim is in the pipeline for us. Well when ??? I look at normal people and I just want to be like them. Next month will be 14 years of this crap.
Johnny- So sorry about your mom.
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So sorry, Dianarose. Wish I could say something to make it all better. What chemo is next and how soon do you start? You are very important to us. Hang in there, please!!! Hugs, Cathy
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Cathy- I start Havelen tomorrow. I got cold caps this time. The thought of doing the bald thing for the 4th time puts meover the edge. I’m afraid to start a new chemo. You never know how your body is going to take to it or not.
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So I was on that for about 5 months. I did okay. My hair thinned but I didn't go bald. Hopefully you won't either. Worst side effect for me was neuropathy in my hands, feet and legs. I still have a bit in my toes but the rest of me is fine now. I know, we all react so differently to each treatment. I hope this is an easy one for you. Big hugs, girl!! Cathy
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Dianarose I am sorry Xeloda stopped working for you. I have just gone through a transition from a pill, Ibrance, to IV chemo and felt the same. And it is frustrating wondering if/when there will be better options for us. You mention you’ve been going through this for 14 years. That is a really long time and you must be an incredibly strong person. I’m hoping Halaven treats you well.
Johnny I am sorry to hear of your mother's passing. It sounds like you did amazing things to make her time happy and fulfilling.
Sheri I’m glad the paracentesis is done and they got a lot of fluid out. I hope you are feeling a lot better.
Pat I really admire your decluttering. It is something I need to do, want to do, but just can’t get started. I did get a great book, The Life Changing Magic of Tidying Up, and have read the first chapter. That’s one of my great delay tactics, instead of doing something I read about it. But hopefully I’ll get inspired to start.
Caitedidruns. Hope you have gotten relief and answers by now after your frustrating hospital experience.
Cathy you mention that you are getting acites again. Have you gotten them all along? My PET scan mentioned seeing some acites but I don’t think I’m feeling any effect yet though I’ve had so many procedures over the past 2 months I’m not sure how to distinguish what caused what.
Jane I’ve been at the beach the past few days, not like a sunny Australia beach but a cool and windy beach in Northern California.
It’s been a great 3 day break for us. The first day there were many whales feeding and a few breaching right in front of our hotel. Yesterday we did a nice drive along the 17 mile drive and today we went on a boat ride on a slough wildlife refuge where we saw sea otters, seals, many pelicans and many other birds. It feels very relaxing and healing to be out in nature. This is our last night here, tomorrow drive home and infusion Thursday.
Hugs and good wishes!
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Ha Liwi! That's too funny. Not only are you avoiding decluttering, you have also added to the clutter by buying another book.
Seriously ladies, I have no choice in the matter and, must admit, that I am finding it exhausting with a full time job. My MBC symptoms are not that bad beyond some bone pain/pain under my ribs but I do have a bit of SOB at times and my energy levels are definitely not what they once were. But, I don't have children or a significant other and my mother will be 88 in April. I've told her there are four ways this can go... a) She goes first and I have to deal with this on my own when I may not be up to it, b) I go first and then SHE has to deal with all this stuff with limited mobility and zero computer skills for online sales or c) we both go and the estate does not benefit from the valuable items we do own because anyone trying to settle the estate will be completely and utterly overwhelmed by the volume of "collectibles" (aka crap that nobody wants anymore - if they can't throw it in the dishwasher... forget it). I choose d) get rid of the excess now, benefit from a few extra dollars and know that if we need to move into a more manageable home the house is ready to sell. Of course, it sounds great in theory but it's a lot of work both to convince my mother to part with things at a reasonable price (or free as the case may be) and also to actually sell stuff. People can be incredibly annoying, wasting your time when they really aren't interested.
However, on the positive side of things, it is amazingly gratifying to start seeing some extra space and clear surfaces instead of clutter. Now, can I interest anyone in some ancient gardening magazines...
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Ha Pat, you made me laugh! I bet the ancient garden magazines are very entertaining! I used to collect Romantic Homes and Romantic Country. I loved all things vintage and shabby chic. We were living in upstate New York for 7 years before we moved back to the Seattle area. Our vintage house was FILLED with all things vintage, furniture, and a very large collection of books on The Beatles and records. I kept my Beatles' albums (it's all about the music after all) and my favorite Beatles' books, sold almost all of my beautiful vintage dishes and other collectibles and very large antique furniture and moved. We also had an extensive collection of radios from the 30', 40's and 50's. I'm the youngest of 9 kids so I grew up around all things vintage and still love it. Art deco and 50's kitchens are my favorite. We pretty much sold or gave away everything for pennies but we didn't have to move it!! We have downsized into a much smaller home with only our very favorite things (still too much) but well worth it in the end. It's just stuff! I posted pics a while back of my vintage kitchen. Didn't want the expense of remodeling it so just took down cabinet doors and hung vintage curtains on the bottom cabinets. I display my 1940's fruit dishes that are like the Harker apple pear design. Makes me smile. By the way, I haven't had ascites all along. For 10 months in 2014/15 and again this year since the beginning of the year I would guess. Started having it removed every 5 weeks since end of June. Something is causing it. Has to be something going on somewhere that maybe they aren't seeing. I just don't know. Paracentesis tomorrow. Can't wait. Getting very uncomfortable. Love to all, Cathy Pat, by the way, you might pay one of those companies to come in an help you. They take a big percentage but it may be worth it to not have all the hassle yourselves. I would check with local antique stores to see if they offer that service or might be interested in what you have. Good luck!
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Thanks Cathy but hell will freeze over before my mother goes for that. It would definitely end in bloodshed and I’m pretty sure my mother would come out on top, bad hip, cane and all.
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Pat, LOL! Cathy
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Good morning! I'm up way too early for me today. I'm guessing it's the steroids from yesterday's Navelbine infusion. I do feel a bit queasy this morning, so I'm staying in bed for now.
Dianarose, glad you checked in here and we all wish you the very best on Halaven. I know it's always difficult to have to leave a treatment, especially one you tolerated well. As you know, I did quite well on Halaven for a year and actually was sad to have to move on. Please keep us all updated. You can do this! 💕
Pat, I feel your pain about too much stuff in my mother's home. When I went back to visit my parents as part of my Mayo trip, I stayed at my Mom's, which is the 4 bedroom home we had when I went to high school. She has SO MUCH STUFF! Every room is filled. A lot of beautiful antiques and sentimental stuff but it is overwhelming to think we will need to go throughout that. The sad part is neither I nor my siblings could take the majority of it as our homes are filled too and much doesn't match our decor anyway. We all just have too much I think.
Liwi - so happy for you to get away! Nature is beautiful, isn't it? So nice to get away from our daily “stuff."
Cathy - Paracentesis today! Who knew there would be a procedure that we look forward to so much. Wow - it does provide some immediate relief though. I was so grateful for that. One question on Navelbine: did you keep your hair? Going into it, I had lost about 60% of my hair on Halaven and since my hair is naturally thin, I have to wear a wig or cap. I'm wondering if that other 40% will come back? Tired of not having hair.
Hi to Cait and Jane - hope y'all are feeling well.
Hugs, Sheri 💗
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Sheri, my hair did thin out from Navelbine but I didn't lose it all. Hardly had to shave my legs and was naked in other areas! LOL Can't wait to have treatment today. I haven't gained quite as much weight as I usually do up to the paracentesis. But it's putting lots of pressure on my gut. Pushes fluid up to my lungs it feels like. So I have the constant partial bowel blockage thing going now. Makes it hard to go anywhere because I never know when I will have an issue. Seems to be happening all the time....just worse for part of the week as it figures out a way to come out. Keeps me running to the bathroom. Glad to hear from so many of you this week. You gals are the best support group ever. Just wish we could get together to go shopping and have lunch. In my dreams! Hugs, Cathy
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Well 4.5 liters removed today. My gut is quite sore and will be for a couple of days. Sheri, I forgot to ask you how your paracentesis went? As in, was it pretty easy for you? Did it hurt at all? So much of the time it depends on the technician or doctor or doing it. Mine today was pretty good. He remembered me from 3 years ago. I guess I made an impression! lol Also my heart is still not completely up to par so my cardiologist is upping my heart meds. My oncologist also upped my water pills. UGH!! Just wanted to check in. I'm getting low grade tummy aches tonight. Gonna wrap up in a warm blanket. Goodnight all! Hugs, Cathy
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Hi Cathy - that is a whole lot of fluid! I can’t imagine how uncomfortable you were! I hope this morning you are feeling much better.
My paracentesis was fine. Didn’t really hurt - just a few moments of pain when they do the numbing and then I could feel the pressure and like a “pop” when the needle went in. I had 2 liters taken off, which gave me some relief immediately. I could tell I still had more fluid in my upper cavity that was still there afterwards. I’m still bloated and bigger than normal, but I’m praying chemo will reduce the rest of the ascites. If not, I guess I’ll do another paracentesis if needed.
Also, thanks for the hair info regarding Navelbine. Based on your experience, it sounds like Halaven where I have some hair but, for me, not enough. My natural hair is thin, so I can’t afford more thinning from chemo. Disappointed as I’m tired of wearing caps. I don’t even wear my wig much anymore. Just not comfortable.
Hope everyone has a good day. I’m recovering from Navelbine infusion #2 that I had on Wednesday. Not bad so far, I’m just really tired and have had the big D. I’m being kind to myself and just resting.
Hugs to all, Sheri 💕
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I can't get my intestinal issue under control. I'm supposed to fly on Friday to a memorial for my sister. I have a call into my Doc for help. Hoping I can stop myself up for a few days, otherwise, I just don't know how I can get away from the bathroom. Always something!! Hope everyone is doing okay! Hugs, Cathy
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Cathy, I hope some meds will work, as that is miserable.
I’ve been not feeling well since last Friday. No energy and my ascites is building back up, so I am just not comfortable. Best position is lying down, so stomach has more room to stretch out. This is not fun - I don’t even feel like leaving the house.
Chemo side effects with ascites - this sucks! Today starts my off week and I “should” feel better. I’m just disappointed as I need some relief this week!
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So sorry Sheri, Chemo is just frigging miserable! I hope you have good days to get your strength back. Chemo and ascites is a miserable combo! HUGS, Cathy p.s. Doc gave me permission to use anti-diarrheal in small amounts.
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Sorry that you are feeling so bad Sheri. Chemo fatigue is so frustrating and combined with acites even worse. I’m also still fatigued from my chemo last Thursday. I get depressed when housebound but also barely had the energy for even a short walk outside the last few days. I have medical appointments the next 2 mornings so that will force me to get out of the house. Sometimes I feel like the combination of dealing with the feeding tube and chemo together is overwhelming. Hopefully the fatigue will go away by next week.
Cathy I hope your medicine works for your intestinal issue. It’s auto travel when something like that is going on.
Barb
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Well, all - this is probably officially my worst week off of any chemo. My ascites are not good and I should have had them drained today. I was just not up for another appointment and procedure, so of course I feel terrible. Also, I just had them drained 11 days ago. It's too soon again to go though that time & effort. I'm just weary.
Next week is actually worse though: left eye cataract surgery on Monday, labs Tuesday, MO and chemo on Wed (start cycle 2 of Herceptin/Navelbine), and then paracentesis for ascites probably on Friday.
Barb - I feel your pain that all this crap can be overwhelming! The medical appointments are about the only thing that get me out of the house too.
Cathy, thinking of you today and hoping you are physically feeling well for your sister's memorial. I know how important that is to you to be able to attend.
How is everyone else? It's quiet here.
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So sorry to hear you are having a rough week Sheri.
It was a good reminder to count my blessings. To think I've been feeling sorry for myself because I caught a stupid cold! (Mind you, I think MBC patients should have some type of free pass so that we don't have to deal with mundane illnesses like colds and flus. We have enough to deal with day after day thank you very much!). The challenge I am having is that I clearly am susceptible to bugs with a weak lung following the pleural effusion. Everything goes into my chest - I had pneumonia after picking up a bug on my trip to England. It was supposed to a tick off the bucket list and instead it took me 5 weeks to recover from the pneumonia. I think I'm okay but got a bit nervous when once again I started coughing up green gunk. Eww.
Gearing up for my three month appointment with my MO. I've been having a bit of trouble with my chest and abdomen so not sure what he will recommend. Stick to Faslodex? Scan? Or???
Hope you all manage to have a decent weekend. I'll be spending my time.... trying to get rid of stuff!
Take care all. Pat
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Sheri your schedule next week sounds like mine this past week, 4 days of appointments. I’m looking forward to not having to go anywhere tomorrow, hope I can get motivated to walk to the park. Sunday I’m going to a baby shower. It’s a bit of a drive to get there, but in a town near the ocean so I’m motivated to take in some of that nice sea air. My husband has a close friend who lives in that area so he’ll be able to spend time with his friend while I’m at the shower.
Speaking of my husband, last week he suddenly became a flurry of activity sorting and clearing out many boxes of stuff we had stored, attacking to clutter in our house. I don’t know what inspired him but it was great. Maybe he’s secretly reading my Magic of Tidying Up. book!
Good luck with your cataract surgery Sheri.
Pat I hope your cold gets better.
Barb
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6:30am Cataract surgery went fine this morning - at least I think. I have the follow-up appointment at 2:30pm today. (Yes - go twice in one day at two different locations- both are which are over 1/2 hour from me. So over 2 hours in the car!). Just got the call from my MO’s office that they can get me in for paracentesis in the morning at 7:15am. I decided to do the draining before Wed chemo, as I’m just too miserable. 7:15am was not what I would have liked though. I am not a morning person and after today’s surgery at 6:30am, I’m not a happy camper for another procedure tomorrow that’s a good 1/2 hour away at 7:15am. Then Wed MO appointment and chemo. Does anyone else get so sick of medical appointments?? I feel like I could just scream!!
I’m just so ready for something good/positive to happen. Tired of all this crap. OK - rant over....for now.
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Hello Everyone! Just got home from my short trip. I was sick most of it. I am having episodes again. They just tweaked a bit so I didn't recognize them at first. Spent the time with my family "loaded" to the gills on medication. I must have sounded really stoned to them. We all do whatever it takes, right? Memorial was wonderful. Great to see family. There were 2 generations there who I hardly knew. Spent extra time with my sister. Always does my heart good to see her. She worries every time that it will be the last. I keep bouncing back. She's 9 yrs. older than me so it's still easier for me to go to her and believe me, it's not easy! LOL Thank goodness my daughter goes along and babysits me. Sorry more of us aren't doing better. Good we all know it's okay to rant! We are truly the people who understand what we are going through. Sheri, I so hope you start feeling better soon! Having cataract surgery too. WOW! I've heard it makes a huge difference in your vision. Keep us posted. I am developing cataracts too. Hope your appointment goes great, Pat, and that you get some help with your current issues. I agree, we don't need to have to deal with "one more thing!" Hey Barb! Hope your drive and being close to the ocean was wonderful. I was given some of my sister's ashes. I took them down to Puget Sound as soon as I got into town and let them go along a bluff where she will always have a water view. Miss her! Love you all. I thought about you each and every day! Hugs, Cathy
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