peritoneal carcinomatosis
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guys i"m not reading e/t yet, there is so much going on.
D went through hell and back with bleeding and clots in the bladder, cystoscopy and they still don't know why it happened, hemangiomas? they took it out then the other Uro says they didn't - don't ask.
PET/CT looks bad, Brain MRI tonz of stuff, peritoneal is still there, she has stuff in the parcolic...so much going on, will keep in touch.
By any chance did you ladies ever have Y90, New Onco is considering it.
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Mom - I'm very sorry to hear about D and all that she is going through! I'm so thankful she has you there for her. Lifting her up in prayer right now, as I know tough treatment decisions are ahead. I have not had any experience with Y90, so don't have any info for you there. Hugs to you both today
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Kimchee, not too sure about those daily sit ups! LOL I lie on my bed and do leg lifts. Helps strengthen and loosen up my legs while toning my stomach muscles. Most of the time I feel to inflamed to just do sit ups. Good luck! Hugs, Cathy
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I got to do something Cathy . It looks like I have beer belly from hell and I hate it . But I will try it your way ! Thanks and Hugs to you as well
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Cathy, Dang it, A few days of hope then back to the stomach issues......Hopefully just a little residual blurb? Sorry the Xeloda did not work for you. I have high hopes to move to that next. Boy Affinitor for me was rough. I got a hellashish rash and thats when the ascites started. I was only on it for 3 weeks and quite. Hope it is a good one for you. I think we all get that coping mode amnesia!
Southern, Sounds like Halaven then does not help with the ascites? I was on this Abraxane for 3 weeks and it started to subside. I still get bloated after eating and it can last all day but by morning it had gone down. I haven't had a procedure in 7 weeks. I may go in just to have them the a look just in case. At least Halavah has brought those TM's way down, which is fantastic! Crossing my fingers that it's doing a "killer" job!
As far as neuropathy, mine started when I started Abraxane and had a strong antibiotic the same week that said on the website that I could get that and muscle weakness. My hands are the worst with numbness and muscle ache up to my wrists. It is so random what I can and can't do. Sometimes it is hard typing, turning pages, opening jars. My leg muscles are still very weak especially my upper thighs. I still use the cane outside the house as I am paranoid of falling. I am not sure if this is a neuropathy issue or residual from when I first developed the ascites and lost 30 pounds and all that muscle mass. Trying to do anything I can to exercise them but some days I am just too fatigued.
Got my infusion yesterday and usually would be on my steroid high today, but also got my Xgeva shot and just ACHE all over. Was hoping to clean my bathroom too Cathy and a few other things. But so far am being a slug.......darnit
I have a little toe tingling at night now and understand it gets worse as treatment goes on. I am very concerned too that this will not go away!
good luck kimchee with the Affinity and crunches!
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Artist,
Thanks so much for sharing info on neuropathy. Has your MO suggested any medication that would help with neuropathy? It would seem that a medication should exist for that!
Also, I want to clarify that my previous post was just commenting on the fact that so many here on this thread are struggling with ascites. I do not have the ascites issue yet, so I don't know if Halaven is a chemo that would help clear up ascites or not.
Goodnight all - steroids from Tuesday are out of my system and I'm exhausted.
Hugs!
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How many of us have pooched out tummies that look out of place with the rest of our body? I know I do. I figured at this point it's at least partly caused by inflammation not to mention ascites. So Kimchee don't be hard on yourself about stomach pooching. Had a really bad day. Definitely felt bad enough I almost went to E.R. Finally vomited for a few minutes and the pressure got better. Lots of gurgling today so I start giving myself shots in the stomach tomorrow. According to all my Docs the abdominal pain is caused by partial bowel blockages in the small intestine. I have had bad moments in the past but I am really starting to feel I'm on some kind of downward spiral. I hope I'm wrong and that I can get this under some kind of control. Hoping Xeloda contributed to this problem and that it gets better the further out I am from having taken it. No word on the Afinitor yet. Probably next week. It's amazing how much better you can feel after a shower!! Goodnight everyone. Cathy
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Thanks for clarifying Southern. I hope you never have to find out!
Cathy, they should be doing a CT or ultrasound on your belly to figure that out. They could do an immediate drain for relief!
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thanx Artist
need those prayers. X is GOOD. As far as my past 5-year experience tells me, protecting the stomach is crucial, Germans have great meds for that. Draining a total of 4,5lt from belly, I feel better. Still have the baby bump, which MO said will hopwfully get better in time. Taxol has been more tolerable than Taxoere so far. Hope it is working properly.. which We will find ouut in two weeks.
Edema added to neuropathy with HFS.. and this is weekly dose. This chemo is harsh in it's own way.
There are some trials MO has in mind, yet wehave to first have my TMs under control, currently 1590 that is.
Hope we all feel better in the approaching new year.
Hugs
Ebru
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Haven't posted much but am up to date on this thread and read it daily. I care about you all and hope the best for all of us.
I have a question for all. I pass a phenomenal amount of urine during the night, always during the night both in terms of quantity and frequency. Anybody have this with chemo?
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yes Linda, I do. Guess like in pregnancy the enlarged belly has pressure on the bladder. In fact it's good, considering kidneys becoming lazy in time with toxicity.
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Ebru, I think in my case at least the "baby bump" after a drain is gas instead of fluid. I can be hard and bloated all day then go to bed and wake up nearly normal. So I assume I am expelling gas as I lay down sideways and relaxing??? And linda yes, I do seem to pee much more at night. Again as we rest the fluid collects from all parts of the body to be expelled.
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Thank you Ebru and Artist. It makes me feel more "normal"!
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Visit with MO yesterday and TMs are still on the rise. MO is adding two chemos to my current Epirubicin. (CEF = cyclophosphamide, Epirubicin, Fluorouracil) Anybody had this trio as stage IV?
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Hi everyone I haven't had much chance to post in a while, have been off around Italy for 2 weeks, but I have been keeping up to date with this thread and thinking of you all daily and sending positive thoughts for you all.
So sorry to hear so many are suffering with ascites, that is just awful. I do have some ascites but so far it hasn't caused me a problem. Hoping it can be cleared up for all suffering.
Linda so sorry to hear your TMs are on the rise, hoping the new regime is kind to you but kicks the mets back and gets your TMs lowered.
Mom so sorry to hear everything Dani is going through. I haven't had Y90, but I have heard a lot of good positive stories from others who have.
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lots of gurgling and gassy stomach tonight, I had lots of mushrooms for dinner, wonder if that is the cause, just read "Mushrooms, like beans, contain the oligosaccharide sugar raffinose. Eating mushrooms can cause gas because raffinose is not fully digested in the small intestine, but instead undergoes fermentation in the large intestine"
Something else I should maybe avoid, has anyone else had problems after eating mushrooms?
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Blume, I hadn't thought about mushrooms. I like to add them to stew and spaghetti sauce. Guess I'd better cut it out!! LOL I've been giving myself the Octreotide shots in the abdomen for a few days now. Uncomfortable but getting it done. Start Afinitor next week--got the ok for Tuesday delivery. Restarted Letrozole today. I hope the side effects aren't as bad as the last time I was on it. I got out yesterday for a haircut. Lost all energy in less than 2 hours out. I hate feeling this weak. Turn 64 on Thursday the 26th. No party -- just hope I feel good enough to get out and do something fun. I love to go antiquing...don't buy as much as I used to because we have a little home. We now have a rule of "where are you going to put it?" LOL Wish you all well, Cathy
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Cathy same for me with the mushrooms, I Love the taste but am really discouraged from eating them now. Hoping the letrozole is kinder to you this time around. So know what you mean about the loss of energy, this is one aspect that can really get me down sometimes. We just have to make the best of our good moments and enjoy while we can. I am finally learning I am useless with morning's whilst on treatment, I stopped fighting it and just relax instead lol! All the best for your birthday, I hope you can make it a special day, enjoy a couple hours out, go break your rule and do some antiquing!
Love to everyone hope you all had good weekends
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Cathy, I love antiquing too but have the same issue, no room really. I hope you find something super special to mark your 64th! My energy too is just soooooo low.....
Linda, haven't had this combo personally. How will the SE's stack up?
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Artist, so far only SE is profuse sweating, especially my head. I'm still on the steroid high and they gave me plenty of meds to prevent nausea/vomiting which can apparently be tough with this chemo.
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I had a wonderful birthday. Went antiquing...didn't buy anything. The sun was out and I felt good enough to go for a stroll. Just a nice easy-going kind of day. Have a good weekend! Cathy
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Hi all - wanted to check in with y'all to see how everyone is doing. I just finished my 2nd infusion of my 5th cycle of Halaven, so 10 actual total infusions so far on this regimen. Next week is my off week, which I love.
Worst thing about this treatment for me is losing my hair again - third time. I actually saw a pic of myself with my friends and I was wearing a cap. I said to my sister, "I look like a chemo patient in that picture." I truly liked that I could hide that fact more when I was on Ibrance and still had my hair. Ugh. Still watching out for neuropathy but doing OK so far.
Cathy, happy 64th birthday one day late! I truly hope you were able to celebrate and have a special day with your family. You definitely deserve that!
Blume, we have missed you - glad you checked in here. Two weeks in Italy sounds wonderful.
Mom, Linda, Artist, Dianarose, Kimchee, Ebru - thinking of all of you too and praying for good days ahead.
Hugs, Sheri
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Linda, I hope that is the worst of it for you. You deserve a break.
Cathy, sounds like a heavenly day! I need a day of sunshine tomorrow even if I have to hobble around....May hit our local antique store just to dig around.
I wrote this in another thread but a cautionary tale here. Lately my bloating was getting a little worse and not going away by morning as usual. I was getting more and more uncomfortable. My appt was on Monday and lately my Onc has me seeing a new PA instead of him?? I asked her some questions about my bloating like "When do I know for sure that it is fluid and need to make an appt for a procedure?" I hate to use the hospital unnecessarily....She felt my abdomen and said "I feel a small amount of fluid but I would hold off for awhile because there is the risk of infection." By Wednesday night I was pretty miserable so called nd went in Thursday. Much to my shock they had to remove 6 liters of fluid!!!! An all time high...Which has me super worried now that the meds are failing.
southern, have a great week off!
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Artist,
That is so scary! We know our own bodies the best and how they should feel. I'm so glad you got in soon after you called - 6 liters is a lot of fluid and seems a lot to take off at one time. Hope you are feeling much better now and can talk to your MO next time about your questions about your current treatment's effectiveness.
Sending a big hug your wsy
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Southern, That is actually kind of the max amount they like to remove. Very scary that it got to that level before I finally decided things had turned around. I had to get the eribulin infusion after. So then I wonder if it was building slowly over the course of weeks or just exploded in a week or two. It's very scary and frustrating to have to guess what to do. But next time I will err far on the side of caution!
Hugs back at ya!
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Artist,
So glad you are OK. Did I miss a post? I thought you were on Abraxane, not Eribulin (Halaven). If you are now on Halaven, please join that thread too called "Halaven - Day 1!" We would love to have you there
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Southern, did I use the wrong name? The infusion I am talking about is the protein stuff they give you after you have so much fluid removed. I am on Abraxane.
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Thanks, Artist, for the clarification. I'm not sure what that protein infusion is called. I'll be interested to hear what your MO has to say about the ascites coming back and the Abraxane. I so wish these doctors had a better solution to get rid of ascites! Seems there should be some sort of medication that could help. I hope your neuropathy is feeling better today. I'm still wary of that for me as I continue on Halaven.0 -
Hey Sheri and Artist. I had an albumen infusion after my last ascites removal. Is that what you had? No major abdominal episodes since I started the Octreotite injections. It's amazing what we can do when we have to....LOL. See the Doc this week! HUGS, Cathy
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Cathy, what exactly are these Octreotide injections for? I've never heard of this medication but am very interested in anything that helps with our stomach issues!
Hope your MO appointment goes well this week and you get a start on your Afinitor. That's one of the few I haven't taken.
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