peritoneal carcinomatosis
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What a week. Felt weak all week haha! Doing better finally. Had to go see another doctor today for a post hospital check up. Geez, checkups for everything. I don't start my next clinical trial cycle until November 6. So I still have some time. I'm hoping as I feel better, I will better be able to tell if there is a difference in my gut symptoms since my tumor markers have started going down. Just haven't felt good enough to tell so far. I think I might be starting to grow ascites again. Damn! Tomorrow is the big "65." We are going out to dinner tomorrow and I'm getting crab!! I can't wait. We just bought tickets to go see a Beatles' tribute band on Saturday. That's my idea of a party!! Hope you all have had a better week. October is almost in the rearview mirror! LOVE YOU ALL, Cathy
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Have a great birthday Cathy! Beatles tribute band sounds fun
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Hi to all lovely Ladies
Dianarose - hoping that the chemo and immune therapy have ‘kicked in’ and providing some relief. Migraines are a debilitating nightmare and my heart is with you!
Cathy - HAPPY, HAPPY 65th BIRTHDAY 🎂!! May your very special Birthday be super special and you enjoy your absolutely yummy crab dinner! You deserve a wonderful day and I am sending HUGE Birthday wishes and hugs! XOXOXO It is Friday afternoon here so well into your Birthday here in OZ. How fabulous that you are going to Beatles tribute - fantastic - cannot wait to hear all.
Enjoy your weekend everyone. May it be free of suffering.
Love to all,
Jane
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Cathy, so glad you are feeling a bit better just in time for your big day! Happy 65th birthday, my friend!! Sounds like you have wonderful plans to celebrate the birthday weekend with eating crab tonight and seeing a Beatles tribute band on Saturday - what fun! Hope you enjoy every minute of your celebration - you deserve it! 🎉🎂🎶
Dianarose, praying for better days ahead for you as the WBR treatments get farther in your past. Boy this fighting is so tough every day. Hang in there with your treatments - know that we are here for you!
Waving hi to Jane, Pat and Barb. My Navelbine chemo from Wednesday has kicked in and I’m not feeling too well today, so that translates to another day on the couch. I’m OK with a few days on the couch after chemo. I’ve just had way too many these last 2 months. I’m hoping my body is starting to adjust to this new treatment and can recover much quicker than it has. We will see.
Hope we can all enjoy the weekend with some relaxation and celebration. Hugs to all!
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Well, the Big D reared it's ugly head with bad cramping. I was about to throw in the towel for celebrating, when my husband went to Red Lobster and got take out crab for me. I had crab dipped in butter with one biscuit and 2 bites of mashed potatoes. I am uncomfortable but I am smiling!! Hoping I feel better tomorrow. The theater with the Beatles' tribute band is just a short drive from us. I will brave it and hope for the best. Tired of being stuck on the sofa!! My gut is also looking like I might need a paracentesis in my near future. I will see how it's doing on Monday. We are kicking butt! Hugs, Cathy Thanks for all the birthday wishes. You made my day.
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Checking in today as it has been quiet these past few days.
Cathy, I'm happy you were able to have some crab for your b-day. This cancer can ruin a lot of plans! Did you have to have a paracentesis today? I still don't understand the cause of ascites. My body seems to have stopped producing the extra abdominal fluid for now. My last paracentesis was 10/5 and I haven't had fluid buildup since then. I really thought the Navelbine was triggering it but I have had 2 Navelbine infusions since then and I've been good. So, I have no idea!
My back really hurt today when I woke up and had to take a pain pill. Been sore all day. My off-chemo week starts Wednesday and I'm really hoping I feel better. I'm on my 3rd cycle of Herceptin/Navelbine and for the first 2 cycles, my off-week was no better than the chemo weeks. I'm praying that it will be different this cycle. I'm still struggling to stay hydrated, so I'm getting fluids on Wednesday. It's a pain to go in for fluids only, but it should help me feel better.
Sending big hugs to everyone! 💗
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Hi Everyone,
My MO called yesterday with news on my latest CT scan which is still stable. Faslodex seems to be keeping things under control and will hopefully keep the genie in the bottle for quite awhile. I’ve also been dealing with back pain - my MO recommends that I have radiation again. While I find this one a bit tough (after all, it’s not like we are immune to the aches and pains of age and over exertion) I agree that I need to give it a shot (figuratively and literally) as the associated headaches are really getting to me. I see the RO next Monday with treatment to follow soon.
So sorry that several are struggling with fluid build up. Hope you get relief soon..
Hugs. Pat.
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Hi Pat,
What does your MO think is causing your back pain? I'm not understanding why radiation is being recommended. Do you have bone mets in your spine? I'm trying to determine what I should be asking my MO as I've never had this back pain before. I haven't had any scans since July but I probably should soon. Any input would be appreciated.
Thanks so much, Sheri
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I have extensive bone mets. Spine (particularly lumbar which is the likely source of problems), scapula, sternum. femurs, ribs, hips, etc. So no doubt they are there and have already caused problems in the past.
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Thanks, Pat. I'm going to ask my MO about my back pain next week at my appointment.
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Greetings to all. It's good to see your updates though I wish we were not all having so many struggles. My issues have been with worsening hand foot syndrome. It got slightly better before my last infusion then has gotten much worse over the past 2 weeks. I get these huge blisters on the tops and sides of my toes, and the bottoms of my feet feel like they have bad bruises though there are none visible. Also I have some blisters and a rash on my lower and upper back. My MO is hoping to not delay my next Doxil treatment but I’m reluctant to proceed until it gets a little better.
It's been frustrating being basically stuck on the couch most of the day because it hurts and makes things worse to walk. I’m hoping to be better enough to go to the theater in San Francisco with my daughter next week which is part of our season subscription.
On the bright side, I got a new iPhone and for the first time ever got the latest model which has a great camera. Since I’ve been limited in mobility I’ve had time to look at the information on the new photo features and I’m looking forward to getting out and using some of them.
Here’s to better days ahead for our group.
Love and hugs
Barb
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Hello All! Well, concert was wonderful. We had so much fun. Left a couple songs early to miss the crowd. I was uncomfortable but it was so nice to see my husband and daughter really enjoying themselves. I forget how much this cancer affects all of us. I had to walk up 2 flights of stairs to get to seats. My legs have been really achy. I have a heated mattress pad that really helps with the aches and pains. It would probably help all of us with body pain issues. Especially in winter, it's so nice to crawl into a warm bed. Sheri, hoping the Navelbine is helping the ascites issue. That's when I new it was working, when my ascites didn't develop as fast. Hope you feel better soon. Barb, so sorry about the hand/foot syndrome. I lost layers of skin off the bottoms of my feet with that. Still have neuropathy in feet and toes....sometimes not so bad....sometimes worse again. Sending hugs and lots of love, Cathy
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Hi all - thanks for all your good wishes.
Cathy, my MO said the same as you. He thinks the Navelbine is working and that has translated into no ascites in the past 3 1/2 weeks. Glad you were able to enjoy your Beatles concert. Experiences creating memories with family/friends is what I cherish the most these days.
Today I called MO to say we needed to do something as my back just aches (comes and goes) and this has gone on for too long. They ordered an MRI, so hopefully insurance approves and I can get that done very soon. That is my worst issue right now, which is scary as I didn't have bone mets previously but not sure now.
Barb, those blisters sound so painful! My feet were sore and very red by the time I was at the end of my run on Xeloda. Do those blisters pop? The crappy side effects we have to deal with.....ugh. Happy you got a new iPhone to occupy you on the couch 😀
Pat, glad you will be seeing the RO next week. Keep us updated.
Dianarose and Jane - sending you lots of love 💕
Thinking of everyone (sorry I may have missed some - my memory is not great) and truly hoping for some positive news for our belly mets group. We deserve it!
💗💗💗
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Cathy I agree that heated mattress pads are wonderful. I got one last year for Christmas. Unfortunately I can’t use it for now because the heat combined with Doxil contributes to blisters and rashes on the body. I sure miss it, especially now that it is getting cooler here at night. I’m so glad you enjoyed the concert. We saw a Beatles tribute band last year and it was fun.
Sheri I’m glad to hear that it looks like Navelbine is working and that you aren’t getting any more acites. Hopefully your back pain is something other than back pain and something that can be fixed.
My large blisters have burst and a couple are taking a very long time to heal. I’m trying something new with the most recent large one, have been draining it the past few days hoping that it won’t burst and by keeping the skin covering it intact the blister will heal more quickly. I’m also now getting some skin peeling off the bottoms of my feet. Udderly Smooth cream with urea is helping with that. I have a PET scan Thursday and it will be good to find out if the Doxil is working on my cancer.
Pat it’s good to hear that your scan is stable. I hope you also get some back pain relief.
Barb
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morning to all. I hope everyone has a better day. Seems like things have been tough for everyone lately. May Jesus step in and give us a break. My vision is bad today so if I type something wrong, sorry.
I have had this bad. Taste in my mouth for weeks. Come to find out I have thrush. Feels like I have caterpillars on my tounge. Maybe I will be able to taste once it clears up.
I have a physical therapy consult today. Can’t wait to get that going. Had a meltdown yesterday when I couldn’t get myself out of the car. Then I go to the eye doctor. I pray he can help mei did all my Christmas shopping and my son is coming over tomorrow to wrap. I’m excited about that .
I pray everyone has good news to report today. Much love to all
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Dianarose, you may have prescription drugs for thrush but I wanted to mention a recent experience I had - I had painful, raw thrush in my cheeks inside my mouth for several weeks which was keeping me up at night as it hurt too bad while I slept. I couldn't sleep on either side due to the pain of my inner cheek being squished against my teeth and the pillow. Eating was painful and would burn regardless of what I was eating. I did some research and learned pineapple helped (which at first thought would seem counterintuitive being that it contains fruit sugars and is highly acidic). I had a fresh pineapple in the house at the time (I live in a tropical climate where pineapple is always available) and rubbed it on the areas once a day for several days and ate the pineapple and it cleared up very quickly. It would sting a bit and tingle at first when the pineapple touched the areas and then would start to feel better, more calmed down, almost immediately after I put the pineapple on it. I read that pineapple could clear it up literally in a day or two and it did so in two days for me. Apparently the bromelain kills the candida fungus in thrush.
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JFL- thanks for the info. I will try thiis.
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Morning all!! JFL, that's fascinating. I will definitely try this when I need to again. You never know when thrush will rear its ugly head. I don't know what's going on with me. I guess the ascites puts enough pressure on my gut that it makes it hard for me to eat. I had 6 LITERS taken off my gut yesterday. I promptly ate dinner when I got home. A little bit of a mistake. LOL Gut is very empty and sore this morning. I'm supposed to see the P.A. next week but I really feel like I need to talk to my dr. I have lost weight all summer. Even though tumor markers are down, the rest of me is feeling like I'm steadily going downhill. It's hitting my family hard too. Just stopped to talk to my husband and he's feeling very sad. We all can see the writing on the wall if we don't get whatever is causing the ascites under control. UGH!!! Guess I will call the Doc in 1/2 hour and see if they can get me in. Always something. HUGS, Cathy
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Dianarose- you have had so much going on lately and have been such a real trooper through it all. I'm praying for you now that you can rest your body, do PT, and begin to recharge. I also hope that thrush goes away quickly. Great tip, JFL!
Cathy - 6 liters??!! I can't imagine. The most I had was 3.6 liters and I thought I was going to burst. It is so incredibly uncomfortable. I truly wish these doctors had better knowledge about ascites and how to control it. It seems to be a mystery to them also!
Hugs to each of you. Know that you all inspire me with your strength, perseverance, and wisdom. Truly don't know what I would do without y'all!
❤️ Sheri
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My Lovely Belly Mets Ladies
Glorious hot sunny day here and I am sending HUGE warm healing hugs to all. I have read all the posts and can only say - my goodness we need a big dose of GOOD TIMES!!!!
JFL - very interesting about the pineapple..... I love pineapple however in Australia it is a NO NO for belly mets patients. Far too much fibre and acidic. Diannarose - your ‘gut’ may be far more robust than mine. The belly mets has caused extensive damage to my ‘internals’. I would suggest that you use it to rub the inside of your mouth but do not eat it.
My tummy is still suffering from my ‘straying off’ my ‘nutrition free, fibre free diet....ugh.....I am so very stupid!
We all have to hang in there as we are such a small ‘boutique’ group. Much love, wishes for good days to my lovely belly mets sisters.
Jane xox
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Boy, Jane, that makes a lot of sense. Wishful thinking on my part that I could handle that much fiber. I've only been able to keep down 7 UP and 1 cup a soup today. I think I'm just hungry!! LOL Doc is getting me in Tuesday morning. Hubby is going with me. We need some answers. I'm soaking up some of that sun!! I need it!! HUGS, Cathy
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Very interesting on the Pineapple. I’d always found it good for digestion. Maybe I’ll try rubbing some in my mouth just for the taste. Anything I drink now drains out of my stomach to a bags through a G tube. I can have clear liquids but avoid anything acidic to minimize acid in my stomach.
I got a brief readout on my PET scan Friday afternoon from the nurse practitioner, She said the summary noted incremental improvement as compared to 3 months ago. The full report hasn’t been posted in the portal yet. It’s good to know these frustrating side effects aren’t for nothing. They will decrease my dosage 10% for my infusion next Thursday to see if that makes them less. At next appointment we’ll talk about how to determine if/when I may be able to get back to normal eating.
Hugs and good wishes to all.
Barb
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Woke up to all the furniture on the ceiling. It’s freaky. Mo cut my steroids back from 4-1. Not working for me. Cantdo this crazy scary stuff. I’m taking two today. It’s me going through this not her.
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Morning Dianarose. I was on steroids for a chemo I was doing in 2015. I went in and told my dr. I was pretty sure I had seen a squirrel run through my house but no one else in the house had reacted so I realized it must not be real. He just laughed and said, "Too much steroid!" Glad you are able to cut the dose. We have enough to deal with without having to worry about what we think we are seeing. Feel better! I had a rough weekend. Didn't feel good enough to shower on Saturday. Yesterday my darling hubby helped me shower so I feel better today. Still getting full awfully fast and vomiting when it's uncomfortable. I think I'm down 15 lbs since Sept. I'm getting quite svelte. Unfortunately at the age of 65 the skin just gets wrinkled. A little fuller is better for me. HUGS, Cathy
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Cathy- this happened before steroids. It is real. Happening from her lowering the dose. Too much fluid around my brain causing pressure. The whole room turns upside down. The cancer is in the fluid between my skull and brain. I wish it wasn’t real. It has happened several times while with. The doctor. Steroids don’t bother me. Just make me hungry
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What you are going through sounds awful Dianarose, disorienting and scary. As far as the extra pill, I say try what you think will work to make it better. I so hope that you will start feeling better soon.
Cathy, feeling full then uncomfortable then vomiting was what was happening to me before they put in my JG feeding tubes to bypass my stomach. Is that something they might consider? The feeding tube is not fun but I feel so much better with the nutrition and not having a horrible feeling in my stomach.0 -
Oh my, we are having some tough times right now.
Dianarose, I agree with you that you are the one living this life and I hope your MO listens to all your concerns and needs. I’m so sorry you are going through this - its essential for us to have a QOL!
Cathy, I hate that you are not able to eat much and get sick if you do. I wish these doctors had some answers for us. I would caution that the JG tube is a temporary fix and I personally hated the whole thing. Barb has a much better outlook on it than I had - lol. That tube combined with harsh chemo gave me zero QOL. (I will say though I was in such a compromised state of not being able to eat for quite awhile before I got the tube, so I never seemed to be able to catch up on my nutrition and have any energy while on that tube for 8-9 months.)
Barb, are your blisters from Doxil at all better? You are doing so well on your feeding tube. I’m so glad about that. What is your MO’s thinking of how much longer you will be on the JG tube?
I finally felt somewhat better today. I was out of the house a long time as my son had an in-depth MRI at the hospital. I hadn’t left the house since last Wed I think. This chemo combo of Navelbine/Herceptin and the fact my cancer was out of control for a bit - I’m just absolutely worn out. I haven’t felt like that since I was on the feeding tube with IV chemo over 3 1/2 years ago. I’m thinking that with each chemo, a bit of my energy goes. I fully see the cumulative effect of almost 5 straight years of treatment - it definitely has taken a toll. I’m just finishing Round 3 now of this combo and I’m possibly seeing a bit of light ahead. Round 4 starts Wed - not ready for it!
Take care all - I’ll check in later in the week. Always good to hear from each of you - love how we can empathize and support each other during this time.
Hugs, Sheri
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Hi all! Well I start hospice. I have gotten weak enough that my dr. doesn't think I can handle more chemo. My tumor markers have started going up....so clinical trial failed me. Dr. Jiang says that if I get stronger, he is not adverse to trying a new chemo but he doesn't think the chance it would help me is very good. He told me less than 6 months. I do know that many of us once we go on hospice actually get better. We'll see. I am taking the attitude that this is no different at this stage of my battle. I would have the same outcome whatever I did. Apparently hospice will call me and come by to get us started. My doc says it's completely paid for. How great is that!! Feeling a little better as I was able to eat pretty well today. My daughter's friend came by and cut my hair for me today. I hadn't felt good enough to get in to her. I will be well taken of. No morose hospice for me. I see British comedies, Hitchcock movies and lots of hippie music from the 60's. Gonna be a party at my house. Love you all. Cathy
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Cathy-I’m so sad to hear this. Sending you all my love. I know this is the next step for me as well. I’m extremely weak as well. Legs gave out in the store today and down I went. Hubby had to pick me up. Does hospice take over once you stop treatment? Still can’t believe this is happening to you. You have been a great comfort and resource to all of us. Thank you. Know we all love you very much.
Diana.
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Thank you, Dianarose. My Doc made all the necessary calls to hospice to get it going. They will then call my family and I and come sit down and talk to us about what I need. I will probably get a hospital bed in my living room so that I don't lose my wonderful living room view... Lots of windows with wonderful sky view. I didn't want to be stuck away in a bedroom. My youngest daughter was with me today and my hubby too. Making the call to my other kids was very hard. One is coming at Thanksgiving and one is coming at Christmas. They are my step-kids. I realized what really great people they have grown up to be. I'm very lucky, I hate to think of you falling in the store. I just found out that Safeway, Walmart and other grocery stores deliver to your home now. You should look into it. I know it will cost a little more but I think at this stage in our lives, we deserve to take advantage of these things. Who knows, I might kick butt and hang around longer. I appreciate your kind words. HUGS, Cathy
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