peritoneal carcinomatosis
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I'm only on Herceptin and Perjeta and I can smell it in my urine and girl parts the first week despite 2/day showers. Yuc
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Chemo again today. Going to ask for a ctscan soon. I am so hoping to be rid of the naphostomy bag soon. It came disconnected again the other night and woke up soaked in smelly urine. DH got me a new sewing machine so I have been making hats. Need to trim the patterns down as these patterns were sized for people with hair. My blood work was so much better on Monday. Platelets up to 254. Can't believe they were 32 a few weeks ago. Will find out today what chemos I will be getting now all the sensitively tests are back. Adriamycin was not on the likely to work list and am hoping she takes me off that one. Makes my heart feel like it's coming out of my chest.
Hope everyone has a good day
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I'm off to chemo land and fluids. I'll be thinking of you Dianarose. Hang in there.
Hugs to everyone.
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Can't believe it's December already!!!! I'm so glad I started Christmas shopping during the summer and that you can shop by mail. My step-daughter was here last week so I had to have all the packages ready for her family to go back to California. We had such a wonderful visit. I've been her "other" mom since she was 8. So glad to get that connection back with her. Both of us have moved a lot because of husband's jobs and hadn't seen enough of each other. I've done better this week on a lower dose of Halaven but my eyes look terrible. Still runny and sore. Do all of you have the problem that when it comes to side effects the oncologists want us to see other doctors? Makes me furious. The other Docs tend to call your oncologist to see what they want to do anyway. I'm getting chemo today so I'm going to push for them to call something in for me. I don't think any of us feel good enough to continually see a stream of other doctors--making and waiting for appointments--not to mention feeling good enough to just get to those appointments. I hate to go to my regular Doc when I'm having chemo because she's on the floor with the walk-in clinic and family docs. (all those kids with all those germs). My rant for the day..... Wish me luck!!!!!!!! Love and hugs to you all. Cathy
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Hi all! I hear you Cathy! There was a woman coughing yesterday in the chemo suite.. wanted to tell her to get a mask. She was knitting the most gorgeous affgan.
I saw my oncologist and we stopped the Nevelbine tumor markers when up to 1523.. 213 point jump in a week. All the nausea and puking explained. I got zofran IV, fluids and carboplatin. The carboplatin is in a lower dose. So I am hopeful it gets me through a couple more weeks. I am pretty tired of all of this. Got a Ensure called Enliv from the onc office and it's the best tasting one yet 350 calories and 20gm of protein in 8 oz! Try it; the strawberry is excellent.
Hummingbird how are you? How's life with the drain? Does it work well? Is the chemo working any better as far as the relief? Thinking of everybody here and hoping you are loved and hanging in there with the side effects and symptoms. Much love to all.
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Hi Ladies. I try to keep up here daily but I've been too weak to post. I've been back in the hospital. Couldn't even get out of bed again. So many things going on. Bowels are a mess, can hardly keep up with the ascites even with the drain (my pressure drops too low),lots of GI issues, and the Halaven is kicking me down further into exhaustion. Rosevalley and Cathy, I know exactly what you are saying. I've had tests and scans - waiting all day now still for a brain MRI. This is really tough.
Thinking of all of you all the time!
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Hummingbird sorry you are back in the hospital. That sucks. I hope they can get the ascites and bowel blockage under control. My oncologist thinks my big hard mass.. ridge across my abdomen is growing and she thinks it presses on my stomach and intestines causing the nausea/vomiting and constipation. So we switched from Navelbine to Carboplatin on Wednesday to ease the emptying of my stomach. So I can drink and eat a little. I got fluids yesterday and that helped a lot. I know what you mean about taking the fluid off and feeling a bit funky and having a fluid shift. I frequently just need to lay down after draining just makes me tired.
I am forced to change doctors because of this damn change in insurance. I need a medical home. So I have to change doctors for what a couple of weeks? This is nuts. Hassle I didn't need. But the plan is better for everyone else. Saves us a fortune we have to switch.
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Oh Hummingbird, I'm so sorry. You must be tired as hell and mad as hell the way you've been getting your butt kicked by the cancer and the treatments. I'm realizing the longer this goes on, the harder it gets. You would think we would just get used to it BUT NO!! I can only send you loving thoughts in hopes that this passes quickly. I am already tired of winter and am looking forward to spring. I know, I'm ahead of myself by months! Wishing warm weather, the sun in our faces and beautiful lilacs to smell. You're important to us. Hang in there!! Love, Cathy
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Dear Rosevalley, so sorry the Navelbine wasn't working for you. It tried to kill me until my Dr. cut my dose but it really did help push back the cancer. Hope you start feeling better. One of the things I've noticed dealing with all this is how quickly it can change. Seems like good and bad can practically happen over night. Sorry about all the insurance issues. I hate the end of the year because of the anxiety over insurance changes and someone not getting preapproval for something always covered before. I end up fighting over medical bills every spring!! I put my little Christmas tree up and am trying to just enjoy the season (while waiting for spring! lol). Love and hugs, Cathy
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Hummingbird - hate that you are back in the hospital. I so hope the doctors can get a better handle on this stupid cancer and your side effects. Just ugh.
Rosevalley & Cathy - I know exactly what you are saying about insurance. Hard to start over again every January. We technically have the same insurance plan for next year as this year but my husband's premiums deducted through payroll have increase 82% for 2017. Not a typo - 82%!! Needless to say, I'm not happy.
I'm on cycle #2 of Ibrance & Letrozole. So far it's not too bad - have had low WBC count so may need a dosage reduction for next cycle. I'm leaving for NYC on Saturday on a girls trip for 4 days. Trying to do some travel while I feel decent as I know how fleeting feeling good can be. Hopefully it will get me in the Christmas spirit - looking forward to some fun!
Know that you are all in my thoughts and prayers daily.
Sheri0 -
Sheri- wow I won't complain as 82% increase is mind numbing. That's crazy. I just hate how so many things in insurance are built in penalties like 100.00 penalty for ER visits that don't count towards deductibles or towards max out of pocket, 50$ penalty for urgent care, meds that aren't covered at all, some meds are 10$ others a %.. it just never ends the fine print and nickles and dimes that bleed you. It looks straight forward when you sign up and like the max your family will pay is 7500.00 but it never works out that way after the bills roll in. Sounds like a nice trip to NYC you have planned hope it's fun! Mental health is as important as physical.
Hummingbird I hope you are doing better and are finally out of the hospital. May the chemo help relieve your misery. Carboplatin appears to be helping me, just had one dose. Diannarose- hope they got rid of the bag and the chemo is working. May your blood counts stay stable and you start to feel better. Cathy enjoy your tree and holiday events. Hugs to all.
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Hi All! Went to the walk-in clinic last Sunday and got an RX for a steroid cream for my eyelids. They are getting better. I got a lower dose of Halaven last week but still had a terrible week. It's just a whole bunch of little things but they keep me from having life beyond my couch. With every day I feel a little weaker and know it will be hard to bounce back from this. The neuropathy in hands and feet and muscle spasms are terrible. I get these sudden dizzy spells. I've also noticed this week that my g.i. system seems slower again==makes me wonder if Halaven has actually stopped working. Feel a little better today but I'm sticking to my guns and asking to change treatment. I think this medication also making me more depressed. Believe me, I don't need the help!! Wishing you sunshine and happiness. Cathy p.s. So many mistakes in typing. Hope I caught most of them.
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Hi All
Just want to update that things for me have gotten much more serious and most of the time I can barely text or even keep my eyes open! I am still in the hospital and will be here for at least another week. Turns out, I now have brain mets. I had whole brain radiation treatment #4 yesterday. Need to have 10 treatments. It's also down my spine and with the belly mets and all the other mets, this is just so tough!
I think of you all the time and I will try to post when I can. Best wishes
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Hummingbird- I gasped when I read your post. It must be devastatingly hard. So much bad news so quickly. Hopefully the brain mets will get beaten back and not make you too tired. I am sure with all the progression and misery in the gut it's hard to sort that out. Please take care of yourself. If they have a meditative channel on the TV sometimes they play nice music and the pictures are soothing watch and to listen to. When I was in the hospital last xmas I listened to the music alot. It helped ease the silence between visits and treatment, diarhrea and vomiting... it masked the sound of the IV humming too. Sigh this is so hard. Prayers your way and much love.
Got fluids at the oncologist and threw up before and at the chemo suite. The carboplatin doesn't appear to be working, my markers went up 168 points to the highest ever 1691. ugh.. explains the gastric reflux and N/V. My labs look good and I seem to compensate well that way. Just feel like crap and can't eat anything without n/v and terrible reflux. Still pulling off the same liter of fluid every day. Sliding slowly.
Cathy glad the eye drops helped. Halaven sounds like a harsh treatment. Prayers your way too. My poor belly mets sisters we need a heap o prayers this wintery morning. Hugs all around.
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Dear Hummingbird, Rosevalley, and Cathy,
I feel just terrible hearing about each of you suffering so much right now. I don't think others get how truly hard it is to have this cancer beast. Rosevalley, I love the idea of listening to soothing music in the hospital.
Know that I'm saying prayers right now for each of you in these most difficult and trying times. Wish I could give you each a big hug in person.
Much love,
Sheri
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Oh Hummingbird, I'm so sorry. This is so much more than what one person should be made to handle. You must be very strong, physically and mentally. I wish we could all step in and take a little of this for you just so you have some extra strength to bounce back. My daughter downloaded all my favorite music for me the last time I was in the hospital. It did help a lot. Dearest Rosevalley, a good throw-up at the Dr.'s office is a great message to them that you're not kidding!!!! Any idea what your next treatment will be? Hoping they find something for you that works right away!! Halaven is not supposed to be a harsh treatment. It sounds like it didn't agree with Hummingbird either. I hope they can come up with something for me that helps with the cancer symptoms but doesn't kick my butt like this. LOVE to all of you. We have a little snow today which is unusual for Puget Sound. Enjoying the flakes and the season. Cathy p.s. I feel the hug Sheri--back at ya!
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Hummingbird, Rosevalley, Cathy, my heart goes out to all of you. So sorry to hear of your struggles - it all really sucks!
Brain mets sound horrendously scary - I hope with all my being that the radiation treatments do the trick without yucky side effects.. We're all pulling for you, Hummingbird!
I feel hesitant to report on my health status because I'm doing really well right now. I do it only because you've said that it gives some scope for hope, and I know when any of you are doing well it makes me happy. So here goes. Saw the oncologist yesterday. Labs are good, ascites is down, I feel good, weight is stable. So, the PICC line was removed (hooray!) and I started on Doxil. Apparently Doxil is a "liposomal" (encapsulated in oil) form of the drug Adriamycin, which has been working so well for me. Can't do Adria any more because it's so cardio-toxic. Delivering it as Doxil is supposedly less heart-dangerous. Let's hope it's still effective! After weeks of draining a liter of ascites daily, it's gradually tapered off. Now I do about 700ml a week, a really amazing reduction. My feet and ankles and legs are much less swollen - I can work at the computer all day and then walk without pain. All in all, I'm feeling back to some version of normal. It makes such a difference when the stupid drugs really work on the cancer and mostly leave the you of you alone.
May you all find treatments that treat you kindly and beat back the beast.
Much love to you all,
- Erica
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Hi Erica! So glad to hear the good news! It does give all of us hope. I remember feeling like the clouds were lifting as I gradually felt better with the Navelbine. The side effects with it were bad but got better when the Doc gave me a week off between every 2 treatments. I felt like a different person. Someone sent me a letter saying their Doc had them on some kind of testing of Halaven every other week instead of every 2. I might suggest that to my Dr. next week. I just know I can't handle 2 on and one off. Wishing you continued good luck -- you so deserve it! Love and hugs, Cathy
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Erica - yea for good news! Makes me happy to hear when one of us responds well to treatment.
I'm feeling pretty well, although I'm not sure if the Ibrance and Letrozole combination is working. My tumor markers continue to rise but my ONC doesn't know if it is because the tumors are breaking up and causing a flare-up. Only on cycle #2 of this combo and I know it usually takes a few months to show it's working. Worrisome but trying to be distracted by Christmas right now.
Treat yourself kindly this weekend,
Sheri
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Oh Hummingbird, My heart just hurts hearing this. You have been in there so long and hearing that news had to be a crusher. I think of you everyday and pray that you will get some relief soon. Same to you Rosevalley and Cathy. I wish there was something we could do too. Thinking of you all tonight and just praying so hard for some of these Tx's to kick in soon (with no SE's of course)
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Hummingbird - so sorry to read about the brain mets. This disease really sucks. I am thinking of you and sending you love and hugs. You have had such a horrible run of things lately but I hope you are well enough to leave hospital soon.
Rose valley and Cathy - I know you are both going through a hard time of it all at the moment as well, so lots of love and virtual hugs coming your way too.
I was put on Afinitor, Exemestane and Xgeva when I was dx stage IV at the end of September. I had to stop Afinitor after 3 weeks due to the se, so now I am placing all my hopes on the Exemestane and Xgeva. I feel well though and am back at work full time. I was to have scans in December but as things all seem to be going well, these have been put off until February.
I don't post often but I do read all the posts on this thread and my thoughts are with you all.
Lots of loveJudy
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Dearest Magpiemumma, Afinitor is the worst isn't it??? I'm amazed by the number of women I've come across who can't tolerate it at any dosage -- I sure couldn't! The abdominal pain was awful as were all the mouth sores. Miserable drug. Hope the company that makes it is working on this. Good luck with the rest of the medications you are on. Hope your holidays are wonderful. Cathy
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Maggpie and Cathy- I only lasted 6 months on Afinitor and I bailed. It was just awful, not worth it. So I totally understand where you are coming from.
Today was a good day. The carboplatin is working, no nausea. I ate a bagel, yogurt and wonton soup. It was wonderful not to eat boost. It's like the chemo works for a few days then wears off and I start barfing again. Such a bizarre cycle. Still have back pain and the ascites is exactly the same. So I will take the good days with the icky.
Doesn't cancer just teach you to roll with it. Hummingbird and Diannarose- I am praying for you both and hope things are a little better and you are feeling better. (((Hugs)))
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Rosevalley, if I may ask, what was the worst part about the Afinitor for you? My oncologist plans to put me on it in a couple of weeks unless my scheduled scan shows more progression. I'm hunting out all the Afinitor stories I can find.
I'm so sorry things are so bad for you right now.
JJ
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JJ- the afinitor caused my heart rate to zoom around often up and ov er 150. Then my BP would either be too high or drop like a rock. I got dizzy and short of breath. I also got whopping pitting edema in my shins,ankles and feet. It was so bad I literally couldn't wear shoes. Flip flops..and creases in my ankles. I have neuropathy in my feet and the swelling just drove my nerves crazy.. soo irritating. I figured what ever Afinitor was doing to my heart might be lethal. It also gave me diarrhea and mouth sores. The mouth sores were hit and miss and generally doable. I finally decided it wasn't worth it. Always remember that not everyone gets the same side effects and there are some folks that tolerate drugs just fine. So try it.
I was so jazzed to try Ibrance and was so hopeful it would work and I just puked my guts up over those capsules. It was awful. My oncologist said she has only had one other person react that way and me. Bad luck. The last 2 days have been ok for me. I go day to day... rolling with the cancer... our weekly dance.
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I read this thread almost daily but don't post much as I feel so bad that I am doing better then most on this thread. Sometimes I think it is plain fear of what my future holds as I read all the pain and suffering. My heart goes out to all of you.
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Dianarose--I know what you mean. I was diag with mets almost 1 year ago. If was a fluke that it was found. I was just starting to have weight loss, mild constipation and decreased appetite. I think I was on my way to getting a GI obstruction, but after diag I was started on ibrance/femara/xgeva and within the first couple of months things improved. I am in awe of the women on this board who are struggling with symptoms on a daily basis and have been thru so many chemos. It is a view into what my future holds. I has helped me some, because it makes me realize I am a long way from the end of the road. It's scary to think at some point I'm going to get sicker. But is makes me want to not dwell on the down side and try to focus on enjoying what I have now. I was so afraid in January when I got this diagnsosis. As I approach completing my first year of treatment I feel a lot more positive. I was initially diag with stage 2 in 1998 at age 46. Another women in my town had been diagnosed with stage 4 several years prior. She managed to live for almost 15 years. She told me the goal was to stay alive and hope you didn't run out of drugs to try. I hope all the women on this board have some comfortable days and are able to enjoy the holidays with their families.
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Hummingbird- thinking of you and wishing you well. I hope you are hanging in there and the WBR is doing it's trick. (((Hugs)) prayers and loving kindness your way.
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Rosevalley, WBR is totally kicking my butt! And I'm having problems with the partial bowel blockage on top of that. So hard to even text. How are you doing? Have you been more comfortable lately?
Thanks to everyone who is thinking of me and pulling for me. I so appreciate all the good wishes and support. Wish I were able to post more. But I want you to know that I think of all of you all the time! Sending love and best wishes
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Hummingbird - Thank you for updating us - I'm so sorry to hear of your ongoing struggles. We are all rooting for you and praying for the best outcome possible. You are so strong and I feel the positivity in your posts. Hang in there, sweet sister!
Rosevalley - hope you had a N/V-free day today and are feeling better.
Hugs,
Sheri
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