peritoneal carcinomatosis
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Hi all -
Cathy - so happy you got to go to your sister's memorial and spend time with family creating new memories too. Sorry you had to deal with episodes throughout the trip. Makes it difficult. Beautiful what you did with your sister's ashes I bet she would have loved the sentiment of “always having a water view!" I love that!
Well, I wanted to tell you about my terrible experience at the eye doctor yesterday afternoon for post-op appt. The tech took me back to a room and said we would take off the eye patch for the doctor to look at my eye. OK, I thought. No problem. What I didn't know was that the eye patch was basically adhered to my face with tape that acted like superglue. Oh my gosh. He started pulling off the tape and I was in tears. It felt like he was tearing a layer of skin off. It hurt so bad, and I usually have a high pain tolerance. So, I have tears running down my face and the tech is telling me that he's sorry and he doesn't enjoy doing that. I couldn't stop crying when he was done and the tech left the room to “give me a moment." My DH was in there too and he couldn't believe how hard the guy was pulling on that tape. When the tech came back in, I told him he would not be putting that patch back on my eye and I would do it at home with proper medical tape. What is wrong with these people?? I was so furious! When the Eye Surgery Center called today to check on me, I told them what happened and told them that would absolutely not be happening again on my next cataract surgery in 2 weeks. Do they not have cloth medical tape?? The lady said that some patients bring their own. I will do that for next surgery but shouldn't have to. They are using the wrong tape, which is quite obvious.
Now, my today's story is I did a paracentesis and got 3.6 liters of ascites drained. I had just drained 2 liters 15 days ago. Cathy, I'm not sure how you can handle having 4 1/2 liters extra in your body as this 3.6 liters made me so damn miserable. I'm in bed now resting before I go do labs in 45 min. I'm wiped out and still have another long day tomorrow. The ascites building up then having to drain has about pushed me to the edge.I'm finding it very hard to have a good QOL. I just don't feel well at all. Hope you ladies are faring better than I. I'm not loving life right now in the least. Sorry I'm a Debby Downer today (and the last several days actually.)
Waving hello to Barb, Pat and Dianarose!
💕 Sheri
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Sheri, OMG! And there answer to the problem is for you to bring your own tape? what is wrong with these people? And on your face, too!!!! I always have had trouble with Tegaderm {?} After my first surgeries it would rip my skin off when they removed it. I HAD TO ASK THEM TO STOP! I can't count the number of times they snuck it on me anyway. I did okay with most adhesives over the years until recently. I'm having trouble with even the band aids they use. I have to remember to remove them almost immediately. Sheri, I'm so sorry you're feeling bad. I so hope the treatment kicks in pretty soon and you get some relief. It seems like with chemo you usually feel worse before you start feeling better. I know that "better" can't come soon enough. Hard to imagine you grew that much fluid in such a short time. So sorry, honey. I wish there was something I could say or do that would really make a difference. Just know we are all with you in spirit. Wrapping you in a big hug, Cathy
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Oh, Sheri, how awful. What an ordeal and, like Cathy, I’m gobsmacked that they would suggest you need to bring your own tape. Are they kidding? Unbelievable!
Cathy, so sorry about the episodes. Both you and Sheri are having so many challenges.
My appointment with my MO went well but then, it always does. I’m incredibly fortunate as he is an absolute prince. We usually laugh and joke quite a bit as I have a slightly wacky irreverent attitude. He will be ordering scans, bone and CT so we will see how things really are. He feels I am doing well and is leaning towards continuing on with Faslodex if there is only a small amount of growth in the bone mets. Of course, the proof will be in the pudding... how will things look on the scans? My TMs are actually back in the normal range for, as he put it, “what it’s worth”. My TMs appear to be particularly useless. The highest the have gone is approximately 40 with extensive bone mets, pleural effusion and something going on in my belly.
Well, hump day tomorrow. Still working full time. I sometimes wonder how long I can keep this up but for now it ensures I don’t need to stress about finances and it does keep me from dwelling.
Hugs to all. Wishing you all better days ahead.
Pat.
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Sheri I am so shocked by your poor treatment at your eye doctor. How can they not have good medical tape and expect patients to bring their own? Unbelievable! I’m sorry for all you are going through right now and hope that by today you are feeling a bit better.
Cathy that is wonderful what you did with your sister’s ashes. Always having a water view is what I would want, and you’ve given me the words to express it.
Pat I am amazed that you are still working full time. I hope have great scan results.
I took a couple of steps to get back closer to my pre tube life today. I’d been taking Pilates classes before all these issues with my stomach happenedand went for an individual session with the rehab instructor at the studio. It felt good to be there though we agreed that I was only up to a half hour session. Also I drove myself there which was the first I’ve driven since my first surgery to put in the tubes. It felt so good to be out on my own.
Barb
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A BIG Hi my lovely ladies
Apologies for being MIA lately. Heaps happening and thankfully not related to my MBC (except the usual medical appts, blood tests and transfusions).
I have been reading the posts since I last ‘checked in’........my goodness Sheri - how cruel!!! Blatant torture! AND the paracentesis to add to your misery. I am hoping so dearly that you are feeling better by now? Squeezy hugs being sent to you.
Cathy, so happy for you that you were able to make it to your sisters memorial. She would be smiling so brightly from her water view - so beautiful. I felt for you suffering from your episodes. Awful!
Pat, wonderful report - so happy for you and no doubt the scans shall confirm your good prognosis. As Barb says - you are simply amazing that you are working full time.....how do you do it??
Barb - Pilates class..?? Well done you!! PLEASE, PLEASE what is your secret???
Dianarose - hoping that you are feeling much improved and that the new treatment kicks in soon without causing you grief.
I send you all loving hugs, warmth and sunshine,
Jane
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Well over the past couple of weeks things have all gone wrong. I had a day that everything went blurry and was real dizzy and had double vision. Had a ct, mri and a spinal tap. Not fun! I have brain mets. I will start full brain radiation on Tuesday. I’m terrified. They are telling me that things don’t look well. I’m going to Dana-Farber this morning. Not sure what they will be treating me with. They were talking about stem cell treatments. I bought the cold cap treatments and I will lose my hair from the radiation anyways. Sucks!! I constantly have a terrible headache. I hope this radiation works. With this dam double vision I cannot even watch tv. This just came on one day without warning. I am so sad. I’m not ready to die yet. I want more time. I’m only 57. I just can’t wrap my head around it yet. Sucks
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Oh Dianarose....When it rains, it pours! I sincerely hope that the radiation kicks in fast and gets rid of the double vision and headaches. So miserable!!! YOU CAN DO THIS! We are hear fighting with you EVERY STEP OF THE WAY. I wish I could be there to hold your hand and give you a hug and support. I am with you in spirit. The cancer spread that happens to one of us, could happen to all of us. YOU ARE NOT ALONE! Rant, rave! Whatever you need to do. We will listen and understand. Wrapping you in a BIG HUG! Cathy p.s. hope you have music that you love. That would make a huge difference for me.
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Dianarose, I'm so sorry to hear this. It's simply not fair, particularly when younger women like ourselves are struck down by this dreadful illness (I'm 56 - originally diagnosed at 38). It's so hard.
I'm praying that the radiation will help and that you will still have some quality time ahead. Pat
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Sweet Dianarose,
I hate this for you! It’s just not right. Know that us gals on this thread are right there with you providing support however we possibly can. I am thankful you are such a fighter and have the strong will to kick this cancer’s butt. As Cathy said, rant away and we will listen. We all understand what a beast this is we are dealing with. We love you, DR!
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I am so sorry Diana Rose this is so unfair. As all have said we are with you and wanting to provide whatever support we can. Hopefully the radiation will work quickly. It is so scary how
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I am so sorry Diana Rose this is so unfair. As all have said we are with you and wanting to provide whatever support we can. It is so scary how suddenly this cancer spreads I am thinking of you and hoping for a good success of the radiation treatments.
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Well, Cathy, you warned me about this evil Navelbine. Honestly, I am miserable on this Herceptin/Navelbine combo. I've never felt more exhausted. I have been on the couch or in bed since Thursday after my infusion on Wed, and today had to go to my cataract pre-op appointment for my right eye. I could barely walk into the building. My son had to drive me to the appointment as I didn't think I had the energy to drive myself.
I have a call into my MO to see what they think. I've never had a chemo like this where I am so miserable every single day. I'm not happy and my QOL right now sucks. Ladies, I'm ready for something positive!
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Oh Sheri!! I'm so damn sorry. I have been told Navelbine is easy for some people. Maybe not for those of us who need it the most! I did feel better after a couple of months. That's just about when I was giving up on cancer treatment period and then, a miracle, I started feeling better. (And I'm not religious! lol) I could feel that my system was working better. I was on it for a little over 4 months total. Maybe your Onc can change the dosage or how often you get it. If you just can't tolerate it though, don't put up with it. QOL is very important. I had the same reactions you are having. I reached the point where I felt like I was crawling to the shower and back to bed. Is it safe to have cataract surgery right now? I worry you won't heal as well. HUGS! Cathy
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Oh Dianarose - my heart aches for you. Sending you the BIGGEST most squeezy hugs, love and support. I am sure the radiation shall give you much needed relief. So, so, so cruel and unfair! As Cathy rightly says - YOU CAN DO THIS!! You are young and determined and no doubt have incredible endless inner strength to fight. FIGHT!! We gals are surrounding you in a circle of support, comfort, strength and love - always!!
Sheri - soooooooo not fair! I am so very sorry for you. Why does the treatment have to render us useless?! Hopefully because you are suffering so much it means that the Chemo is actively attacking the cancer. You have had a lousy time of late and it MUST improve. I echo Cathy, is the timing right for your cataract surgery? Please, please be kind to yourself.
Hugs also to Cathy, Pat and Liwi - apologies if I have forgotten anyone. Brain is MIA most of the time....Lol
Sunshine, warmth and love being sent North,
Love, Jane
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I’m a total mess today as I get my first round of radiation at lunch time. I have had over 70 rounds of radiation in the past but never to my brain. I am very scared. I don’t like the cage mask either. Will be taking a Xanax or two. Why is everything we have to go through so unpleasant?
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Dianarose, unpleasant is right. Thank goodness for Xanax. I usually ask for something, too. I tend to pick a song and let it go round and round in my brain. Close to meditation but more fun. I see new physician's assistant today (no more Mark) and will be thinking about you. Kick butt, girl!!! HUGS, Cathy p.s. starting cycle 6. I believe I will have a bunch of testing in the next 2 weeks.
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I agree with Dianarose - all this crap is unpleasant. Can they not come up with something else besides this cage mask from the dark ages??!! Our will to live is certainly amazing with that and all the poisons we put in our bodies with chemo. I’m just so drained and tired right now.
Cathy - let us know how it goes today.
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Well, I had high hopes, but I was not all that impressed with the new P.A. Came across as someone just there to do there job. Not a lot of empathy or making me feel that she is invested in my care. Hope I'm wrong. Maybe I will warm up to her. For some reason My Doc didn't order a tumor marker test. Hope to get that straightened out tomorrow. I have chemo. Really tired today. Thinking of you all with affection.... Cathy
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thank you for the kind words. This is unberrible. I cant handle this loss. I really miss my mom.
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Johnny- I'm so very sorry for your pain. No words as I can't imagine your sadness. Please come here for comfort as we welcome you with open arms.
Cathy - good luck tomorrow. You will be in my thoughts.
Well, I got in with my PA tomorrow before chemo. I just called them and said I can't go on with this QOL. I feel so crappy. I don't think there has been one day that I have felt decent since 9/5 when I started this Herceptin/Navelbine. We will see what my PA says - she is always responsive.
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Sheri, good luck tomorrow. Hope you get some answers and help. Dear Johnny, so very sorry for your loss. It doesn't matter your age when you lose your mother. It's just heartbreaking. Hang in there. I've lost both my parents now. I feel sad but I remember the good times. It takes a lot of time to get there. You can do it! Hugs, Cathy
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Hi my lovely ladies
I think we all need to go to Disneyland - jump on those fabulous rides and forget all our woes......!!
Dianarose - I can only hope that the radiation was not too scary and you are resting. I have been sending you positive thoughts.
Cathy - so sorry for your disappointment with your new PA, particularly after your experiences with 'nasty Mark'! Having empathy for patients is a key criteria for the job I would have thought.....?? Hope she 'thaws out'! Good luck for your Chemo tomorrow. You deserve a super special day.
Sheri - heaps of luck for tomorrow and receiving the magic answers you so desperately need. You are so correct that we have to be amazing to keep fighting....and we do!!! Hope your severe tiredness eases and you receive what you need to dramatically improve your QoL.
Iknow the feeling only too well as my QoL is pretty crappy due to unrelenting fatigue, BUT, I am 'still on the right side of the grass'!!
Johnny - there are no words to ease your deep pain and sorrow and give you the comfort you need. Time is the only thing that shall gradually heal your hurt. Hold onto the beautiful memories of your Mom which shall help to keep you strong.
Warm, squeezy hugs to everyone,Jane
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Good morning all!
Jane, I love your Disneyland idea - now that would be fun!!
I wanted to let you know I didn’t have chemo yesterday. PA and I decided that I am just too weak, and so we are skipping this week. I’ve never been so happy to hear those words! We are going to see how well I recover over the next 2 weeks (next week would be my off week.) She wants to ensure it is my Navelbine and not just my “tumor burden” right now. Lord, I am praying all this no energy and overall crappy feeling is the chemo. I don’t know what I’ll do if it’s just my cancer causing havoc - that would really suck.
I’ll be doing another paracentesis on Friday to drain my ascites. It’s only been 10 days since the last one but I’m uncomfortable again and don’t want to be miserable all weekend. Then 2nd cataract surgery on right eye on Monday. Hate all these procedures/appointments, but I just want to get them behind me and then focus on resting.
Hugs to each of you today!
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Sheri, so glad you got the chemo break. Hope it really helps. Jane, I would m eet you at Disneyland in a heartbeat. I could use a ride on Pirates of the Caribbean! Unfortunately, any jiggling of my gut tends to hurt these days...sometimes worse than others. But I'm willing to give it a try! LOL Chemo went ok yesterday. I'm losing both of my clinical trial ladies. One of them didn't even say goodbye. I think I have reached the point where I don't like change. I try to stay positive and open-minded but I am too damn tired to continually start over forging new relationships. One of the ladies taking over I knew from before and love her but she is not the person working with me. Brea shots tomorrow. My hubby is going with me. Makes me happy. HUGS TO ALL, Cathy p.s. My washing machine died a month ago and last week the dryer went. Getting the new dryer today. I'm drowning in laundry! At least my cleaning girl is coming tomorrow. I can't do it all anymore!
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Sheri I’m glad you are getting a break and hoping it helps a lot. You are dealing with so much between the chemo, acites and adding on your eye surgeries. But I understand your desire to get it all behind you, I would feel the same.
Cathy I am also starting to dislike change much more than in the past. Don’t know if it’s the effects of health or just that I am getting older.
My fatigue from Doxil has been much better the last few days but I now have a bad case of Hand Foot Syndrome, especially in my hands which feel like they are on fire. Frustrating because I have the energy to go our and walk, etc. but can’t because of my feet. I called my onc office for advice and to see if she might want to delay my next treatment if this is still bad next week but the nurse practitioner told me probably not. If it gets worse maybe they’ll lower the dose. What frustrates me is dealing with side effects without knowing whether this is even working. I still have neuropathy from Taxol in 2015 which did not work. Even with this, however, I feel so much better without the fatigue it’s an amazing difference. My daughter and I went to San Francisco to see On Your Feet, a musical about Gloria and Emilio Estefan, Tuesday night and had a really fun time.
Dianarose I hope you are doing well after your radiation.
Great idea on Disneyland Jane!
Thinking of all of you, hugs.
Barb
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Happy Friday my Lovely Ladies
Sheri - a break should be the ‘magic needed’.....your poor body is clearly suffering from ‘chemo fatigue’. Good luck with the paracentesis today and your cataract surgery on Monday. My goodness you shall be totally ‘over’ medico appts but as Barb says it is always good to have these procedures behind us. Better now that you shall not be having chemo next week.
Cathy - I do relate to what you say about change. I find it just toooooo exhausting having to find my inner strength to work on new relationships. I feel for you. Pardon my ignorance, but what are Brea shots?? Good luck and happy washing/drying. I am a bit of a washing nut - I find it quite cathartic - sadly......
Barb - so sorry that you are suffering from HFS. It is also a major side effect of Xeloda which I am on (fortunately so far I have escaped...). If you have a look at the Xeloda thread there are numerous suggestions for easing HFS, many appear to be quite successful. What is your secret for battling fatigue (apart from walking)? I do struggle. I love Gloria Estefan - how wonderful for you!
Dianarose - sending you warming gentle and healing thoughts.
Disneyland it is girls....!!!
Enjoy your weekend and may it be ‘episode and pain free’,
Hugs, Jane
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Hi ladies -
I did get almost 2 liters of ascites drained today. Although my stomach feels better, I am completely wiped out. Funny that they used the ultrasound and said they really couldn’t find much ascites. The doctor said she would try anyway as I was so uncomfortable, and thought we would get about 1/2 liter. Both her and the tech were shocked that we got almost 4 times that. Makes me think that the ultrasound machine isn’t always accurate and ascites can hide!
I’m planning on resting this weekend and we will see if my strength comes back at all. Feeling this weak is not fun. Such a chore to do anything. It’s weird when even your iPhone feel heavy!
I read each of your posts and am thinking of y’all. Hate these side effects for all of us. Waving hello to Cathy, Barb, Jane, Pat, Dianarose, Johnny - sorry if I missed anyone.
💗 Sheri
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well I have done four rounds of chemo .i get a migraine after each one. I noticed today some hair is falling out. This sucks! I still have double vision which is annoying and makes my eyes hurt . I have six more round of it. It literally takes under one minute once they have your head locked in the mask. It’s an hour and a half round trip. After I’m done with the radiation I will get on another chemo. Also take immune therapy every third week.
I read we are all having difficulties with something We all need a break from this crap. Hope everyone has a better weekend.
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Hi All! Had my Brea shots today. (Jane, the Brea shots are the line of irradiated breast cancer cells from 1997 they inject into me to get my immune system to recognize cancer cells.) It just takes forever. Went in at 12:30 and got done at 4 p.m. Most of the time sitting and waiting. I think my partial blockage is worse. I can't take more than a few bites of food before I feel too full. Still going little bits that cause problems because it can happen unexpectedly. The new P.A. suggested a good dose of Miralax to see if I can get myself really going again and clean myself out. I think I will try it tomorrow and over weekend and get some sleep tonight. I did have good news today. Out of the blue my tumor marker dropped by 70 points. My husband and I are talking about finding someplace where I can walk indoors. Too hard on me to try to walk in our hilly neighborhood. I feel like I'm losing strength. They always tell me, Sheri, that there isn't much ascites and then get the 4 liters. I think they don't allow for that fact that we have pelvic areas that carried children. Hope you get lots of rest, Sheri, and start feeling better. HUGS TO EVERYONE, Cathy
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Agree 100% Dianarose - several of us need to catch a break right now. I’m glad you are almost 1/2 way done with radiation, then can check that off your list. You can do this!
Cathy, whoo hoo on the decrease in TMs! That is a great sign. Hope the Miralax works and can clear out your blockage.
I’m thinking I may be feeling a bit better today. Still on the couch but I’ve taken a few breaks to walk outside around my pool a few times. Baby steps, right? My sister is coming over and making me her homemade Mac & Cheese. Sounds so good to me!
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