peritoneal carcinomatosis
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Hi Enerva! I've been on both Ibrance and Letrozole. In fact I'm taking Letrozole for the 2nd time. My legs got a little weak on Ibrance but other than that I did well on it for 15 months. Letrozole caused muscle spasms in my feet and legs but not so bad the 2nd time out. Good luck! HUGS, Cathy
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Hi all - it’s good to see many of us having some success on various treatments, including Xeloda, Halaven, Cisplatin. Gemzar, Afinitor, Letrozole, etc. Makes me happy to hear.
Honestly, I’m finding it exhausting this Christmas season being on IV chemo. Last year at this time I was on Ibrance and Letrozole, and found it much less difficult. This year I’m just plain tired. It’s hard to enjoy this time when I don’t have the energy to do a lot and don’t feel great.
Artist, I’m praying the Xeloda kicks in soon and you don’t have ascites build-up again. I know it’s miserable and so frustrating for you. Just UGH.
Take care all - enjoy your friends and family these next few days!
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retro, I am sooooo sorry to hear of your sister. How hard it must have been to walk away knowing it was probably the last time. I am so glad you got to make the trip though. I am sure it meant so much to her.
Southern, thank you. I am stating my second round of Xeloda and mostly it is the fatigue that is kicking my butt. My appetite is not good either but make myself eat anyway. so far since Tuesday I am not feeling the ascites build up but sometimes they spring up in two days so we'll see. The main thing I hope for is that to GO AWAY!!!!
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Artist - oh how I hope those damn ascites would go away.
Recent CT scan shows more progression in peritoneal carcinomatosis. Ascites have slightly increased but remain light to moderate. I'm switching to Halaven next week at that will be my last tx. My bilirubin level has been steadily creeping up and is reaching the threshold where no more chemos can be given. Plus it's an indication that I'm heading towards a jaundice.
I wish us all a happy Holiday Season!
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hi friends u wanted to thank you all again for the comments and also wish you have a decent xmast even though I understand how we all feel this time of the year some of us far away from those who matter most.
I have decided to go to visit some friends up north where thee is a ring and we will go skating tonight. I am a bit sore but I will go skating I am not letting this crap pull me down. I ll post pictures later tonight
Sending you all hugs
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Southernsur… your results are great! Do you take anything alternative in addition to eribulin?
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Danzk - thanks, no I don’t take anything besides Halaven. No additional therapy and no supplements. I do take Ambien to sleep. Maybe I should take something but my Onc didn’t have any recommendations and my bloodwork has been good, so I’m leaving well enough alone right now. Finished up cycle 8 today (infusion #16 today.)
I’m not too happy with this one nurse at my clinic. Halaven is supposed to be pushed over a 2-5 minute timeframe. She pushes the shot too quickly - maybe over 1 minute. I do think this causes me worse side effects. I said something to my PN last time and she said she would say something to the supervisor. Well, I got this same nurse again (very nice, by the way), but she pushed it in quickly again. I’m going to see how my SEs are this week. I’m complaining again if I feel worse than normal this week. These nurses should be administering these chemo drugs pretty consistently and according to protocol!
Hope you all are resting and relaxing today. Getting chemo is not how I wanted to spend my day, but that is life with MBC, right?
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Hello Dear Metsisters, I have been following this thread for a few weeks. I'm grateful for the shared experience, compassion, and wisdom. I'm regrouping this evening after another paracentesis (4 liters drained; 12 days after previous). This was the most painful paracentesis I've ever had, but the relief is worth it right now. I got home and was able to eat a decent sized meal! Tomorrow I will get my second dose of Abraxane in cycle one of 3 weeks on, 1 week off. I really hope this chemo will knock the cancer back and take the ascites with it! Have any of you had any luck with Abraxane quieting down your peritoneal carcinomatosis? My cancer is lobular. Thanks!
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Hello Everyone. My sister died in her sleep this morning. So glad she didn't suffer and so happy I had a little time with her. It's tough right now.... Dancing with the Dragon, I was on Abraxane but only for a short time. I actually was diagnosed with the peritoneal mets about a year later but had symptoms about 9 months later. I hope I can try Abraxane again. Feels like I'm running out of chemo that isn't toxic for me. I wish you very good luck with it. I, too, have lobular breast cancer. I am currently doing well on Afinitor and Letrozole.. Wishing you all the best. I honestly can't wait for 2018. The last 3 years have just been miserable most of the time. Happy Happy New Year!!! LOVE and HUGS, Cathy
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Oh Cathy I'm so sorry for the loss of your sister. I'm glad you got to spend some time with her and that she didn't suffer. May 2018 bring us all peace and health.
Dancing with the dragon - I don't have any experience with Abraxane.
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hi Cathay I am sorry for your loss. I also wish that 2018 brings better days for all of us.
Sending you all hugs
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Cathy,
So sorry to hear about your sister. It's never easy to lose a loved one and I'm sure you will miss her a great deal.
I too am looking forward to putting 2017 behind me. It's been a rough year, not just for me. Just in my office, tragedies struck my boss, a couple of my colleagues and staff members.
Wishing us all a joyous and healthy 2018!
Pat
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Cathy, I’m so sad to hear of your sister’s passing. It’s always so difficult when a loved one is gone and seems especially so during the holidays. I too am glad you were able to see her one last time - I know that was so special for you.
Dancing - unfortunately, I did not have any luck with Abraxane. I do have lobular too. Sorry to hear about your ascites as I’m sure that is very miserable. I do think some here have had better luck with this treatment, so hopefully they will share their positive experiences really soon.
Here’s to a healthier 2018 for us all!0 -
So I got out my IPOD and put in my earbuds for some incentive to get out and do dishes... I'm standing at the kitchen sink dancing my heart out....arms waving, hips swinging. Really going for it. I look up and there's my husband who has no idea I'm listening to music with a look on his face that was priceless. He thought I had finally lost my mind. We had a good laugh and I decided that I need to fill 2018 with more joy than what 2017 has offered. So I wish all of you "an arm waving and hip swinging" year. We deserve to find joy in our cancer journey. LOVE, Cathy
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retro, I'm so sorry to hear of your sister's passing but glad it was peaceful for her. I got a wonderful pair of headphones for Christmas so may get "caught" in the same humorous situation.
Linda, thinking of you and hoping the best long time success with your treatment. I'm sorry you are in the situation of running out of choices......I pray for the ascites to go away every day.
Dancing, I too have lobular and had success with Abraxane on the ascites. Went twelve weeks without a Para. BUT it di cause severe neuropathy in my hands so my Onc wanted to give it a break. He seems to think I can return to it. I am on 2nd round of Xeloda right now and it seems to be helping slowly but surely. I'll keep you posted.
enerva, have fun skating!
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Cathy, I am so sorry that your sister has died. It is so hard. My thoughts and heart are with you.
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Thank you for all your support! 2018 has to be better, doesn't it?? Had 2 abdominal attacks, probably partial bowel blockages, in the month of December. Neither one was for more than 8 hours....just really uncomfortable. No fun to vomit but that is usually the only thing that relieves the pressure. See the Assistant next week. Have mouth sores from the Afinitor finally. I was hoping I could skip that side effect. Have a steroid mouthwash to use. Hope I can get it under control. Can you tell I woke up not feeling very well? LOL Glad I have somewhere I can go to vent. Sorry if I sometimes give TMI. LOL Love and hugs, Cathy
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OK - I’m trying this again! I wrote a long post yesterday and it never went through?? Ugh!
Cathy, please vent away - we are here for you always. Here is to a better 2018 for us all! 🥂
I do have a question: how do the partial bowel blockages go away? It makes sense that throwing up would make you feel better, unfortunately. I was thinking they would be the result of tissue thickening/inflammation, but I’m not sure. A messed up stomach/digestive tract is certainly not easy to treat - we have to be the rare birds apparently.
I’m relaxing today after busyness of holidays and taking down Christmas decorations this weekend, and of course, chemo the past 2 weeks. No chemo this week and I’m getting my rest in! Hugs to all! Southern
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Hi Sheri. It seems like vomiting removes the pressure from my stomach to the small intestine giving it a chance to unkink. I've gotten from my Doc that I get a slight kink in my small intestine and that is what sets the abdominal pain in motion. I would imagine that all of us have inflammation in our intestines. I think the cancer cells coat the intestines causing the issue. Not sure though. It's kind of amazing that we don't all have the same symptoms. I guess it all depends on where the cancer has settled the most. Since the cancer doesn't show up on scans, we can't seem to catch a break and get the kinking on a scan. We did the time I was hospitalized. It was by far the worst experience having my stomach pumped!! Still feeling issues today from my flare up yesterday.. Kind of like "go ahead, make my day." Just splurged and had a yogurt. OK so far. I still need to take my decorations down. I got them up late so I'm just enjoying them for a few more days. Hope you are doing well on your chemo! HUGS, Cathy
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Hi all -
Today I’m thinking how this thread has changed so much in the past year. We have had a lot of newcomers, which I’m so glad they have found this thread for us to all share together. I do find myself missing those who were so vital in helping me when I joined - Longtermsurvivor, Rosevalley, and Hummingbird. It still seems unbelievable that they have been gone a year now. Makes me sad and also I find it hard to think much about the future beyond a few months.
One thing I am looking forward to is some upcoming Christian concerts that I got tickets for at Christmas. I told my family that I didn’t want gifts this year, but I would like “experiences.” So, I got tickets to 2 different concerts - one for TobyMac and one for Mercy Me. Can’t wait! What things do you all have planned this year to look forward to?
Stay warm everyone! ❤️ Southern0 -
Hi Sheri and All, It has been a tough year, hasn't it? I, too ,miss those who have gone before us. I miss their voice and opinions and wisdom. When I feel well enough, I like to get out and "make memories" with my family. It's good for me and it's good for them. I had a bad weekend. I had 4 days out of the last week where I had my abdominal episodes. Something is definitely very wrong. Hope it's just a switch to a higher dose of Afinitor. (Never thought I would hear myself say that!) I will keep you posted. HUGS, Cathy
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Hi all,
I've been out for awhile just making Holiday memories and helping my girls move into their new place. On my week break from Xeloda and feeling OK except the ascites pressure in the lower abdomen which never goes away even after "the procedure". Makes me walk very awkward like I am very pregnant and difficult to get very far. I have been averaging going in every two weeks. Was hoping X would kick this to the curb like Abraxane did but, alas no. Maybe round three will finally kick in? I miss all those ladies too. A pretty elite club we have here.......lucky us
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Cathy, yes - it is so difficult to know if it’s the belly mets or the chemo, isn’t it? It makes me feel like any kind of stomach weirdness is cancer progression. Not a fun way to live life.
Artist, I sure hope the Xeloda can help with the ascites. I will say Xeloda seemed slow but steady for me on my TMs. It worked for over a year. These chemos are frustrating and impossible to predict. Glad you’ve been able to make some good memories with your girls.
Tomorrow I have onc appointment and start Halaven cycle #9. Always anxious to hear my TM #, which we do every 3 weeks after each cycle. Truly exhausting to live this way. I’ll let you know the update.
Take care all
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Hello All, It's good to be catching up with you this morning, drinking tea, and watching the flames dance in my woodstove.
I finished my first cycle of weekly Abraxane (3 on/1 off) and am in my off week now. No clear indication of response yet. I'm still needing frequent paracentesis (weekly) and careful attention to what I eat (and don't) to avoid obstructions. I hope the next cycle kicks in against this dragon!
I can so relate to the vomiting/retching sometimes releasing obstructive symptoms. In my case, we know the small bowel wall is diffusely thickened and has thin layers of cancer coating it. I'm on a very low fiber/residue diet to avoid blockages in the narrowed edematous slow-moving intestines. When the pressure from the ascites is added to that picture, the risk is even greater. I rest my intestines (nothing to eat or sips of water at most) as soon as the cramping pains start. But often, it's the burst of increased intra-abdominal force that comes with vomiting that seems to push the blockage open.
Cathy, I had to smile at your use of the word, "episodes". When I was having such frequent obstructions before my small bowel resection in August, my grown kids and I started referring to them as "episodes". I am sorry they are hitting you so often and hope things settle down for you soon.
Survivor, I sure hope your appointment goes well today and that TMs are behaving along with all other s/s. I like your idea of finding things that we look forward to doing. In the very short term, I'm excited about going to my youngest grandson's 4th birthday party this Saturday. A friend will drive with me to Flagstaff (about 2 1/4 hours from here). He's having a superhero party. I think i'll decorate my face mask accordingly :-)
Artista, I hope round three of Xeloda is the magic number for you! When you did the Abraxane, what schedule were you on (3 weeks on/1off, every three weeks, etc.)? How long did it take for the ascites to slow down?
Everyone, may this day offer some bit of beauty, joy, love, and hope into your life.
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Hi all,
MY QOL has been constantly declining these past few weeks and all the chemos I've had since May have failed me. I decided yesterday I'm stopping treatment. I'm meeting MO next Monday and will inform her of my decision. I want to get the ball rolling to go in a hospice facility as soon as feasible. It's something I've been thinking about for some time now. I'm actually surprised at how well I feel about this decision both emotionally and rationally.
I will continue to check up on you girls and hope the best for all you. I will also give you updates on me.
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Dearest Linda, I'm so very sorry you have reached this point in your cancer battle. Wishing you peace and love and a smooth transition. After seeing my sister at such peace while in hospice, I know it will make that decision easier when the time comes for me. Wrapping you in a BIG HUG, Cathy
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Thank you so much Cathy. Big hug to you too.
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Linda, I also want to let you know how sorry I am that things have become so challenging. I struggle to know exactly what to say but also want to wish you peace and want you to know that I am thinking of you. You have made a difficult decision that all of us must one day face and have done so with grace and dignity.
Sending gentle hugs. Pat
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Linda,
I too am so sorry to hear this. I know it is such a hard decision to make and one we have to/ want to decide for ourselves when we think the timing is right. I pray for God to guide you in your future decisions and give you strength and pain-free days through this next chapter of your life. I pray for future moments of pure joy with family and friends. Please know we are here for you to share and vent anytime you need.
Sending you much love today!
Sheri (Southern)
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Dancing, awesome that you for going to your grandson’s 4th birthday party over 2 hours away! Creating memories (and for me, trying to get my kids through school -haha) is what it’s all about these days.
Yes - these chemos need to kick in soon for those with ascites!
Met with onc today and my TMs went down 14 points, so not much. I am OK about it as it’s still a decrease, but I really wanted a higher number. After a full chemo cycle, I want good results (as we all deserve, I might add.) Hopefully next cycle.......
Hugs to all of you!0
