peritoneal carcinomatosis
Comments
-
Cathy do you find your abdominal pains come with constipation, then followed by diarrhea? This was how it was for me. I find the key thing is to keep regular. My Onc gives me Movicol (same as Miralax in the US) and says to take 1 or 2 sachets a day if I need it, even up to 4 if things are really bad. So far its working for me.
I hope you get some relief soon, abdominal pain is so miserable. If you do try the buscopan tablets, be sure to take 2 as soon as you feel the pains starting, don't wait for them to get really bad, then take more throughout the day, up to 6 a day.
0 -
Blume- how is Ibrance working for you? It was my great hope and my tumor marker came down the first 3 months then started going back up. Was so disappointing.
0 -
Dianarose, I am just into the second week of my second cycle on Ibrance. I haven't got any results on tumor marker tests yet, I must ask my Onc when I see her next week. I'll get my next scan in October. I am so hoping for good results on Ibrance after the total failure of Taxol. So far the side effects are minimal, mostly hot flashes from the Letrozole, today some bone pain in my calves, but not sure if this isn't from kayaking yesterday, just being sat too long in a confined space. And my Onc told me after the first two months I only have to go to the hospital once every 4 weeks which would be so wonderful - hoping to have some 3 week holidays in the winter months to somewhere sunnier! Does anyone else find the cold weather just makes them feel worse? Maybe its just psychological but it just seems to make me stiffer and ache more when its cold - 52 and sometimes I walk like my 80 year old Mum!!
How are you doing now Dianarose, is your treatment going better? Did you get the problem with your well sorted too?
0 -
Hi Blume and all! I find there is no rhyme or reason as to what starts off the abdominal pain. I sometimes have a sense of heaviness before it starts but not from constipation. The pains started out as bloating with severe gas pains that wouldn't alleviate until I had vomited and then would gradually lessen over a few hours. This is why my Doc thinks they are caused by mini blockages or something like that. The gurgling and diarrhea are new symptoms which makes me think it's acting like IBS. These episodes can last for days. Doc finally called in my RX for Reglan but never heard back on a referral for gastroenterologist. I feel enough better right now that I'm not willing to let this put me in a bad mood. Onward and upward. Hope we all have a great weekend!! LOVE Cathy
0 -
Cathy I am so pleased to hear you are feeling somewhat better
Keep pushing for that referral to the gastroenterologist, they were essential to me in sorting my abdominal pains, gas and gurgling!Have a great weekend too and everyone else xxxx
0 -
Seems like my bloating never goes totally away even right after the dreaded procedure. It's better but my system definitely moves slower, bowel movements are very infrequent. So I build up lots of gas and the other.
TMI So I have started a regular regimen of Myralax too and in between take an occasional Senna tablet. By the time things finally decide to move it is usually time for another procedure. Very frustrating! I just wish my abdomen area could feel flat and normal for awhile, unbolted. It sucks...0 -
Artist - Hope you can get to Brownsville easily with your new regimen!
Had my monthly visit with MO yesterday and asked when she envisaged a chemo break. Wishful thinking on my part after 4 cycles, she wants another 2 cycles of Taxol, so I agreed. I was so determined to have a break now but it's like going to the dentist, it hurts until you have your appt. As my week off progressed I started having more energy and stamina, haven't felt this "normal" in a while. CT scan will be done sometime between 20 and 26 Sept. Physical exam don't indicate ascites.
0 -
Artist i actually appreciate you being candid. It's so important to know these things, i think it gives a heads up for when someone is going through the same issues. Thank you. Sure hope you can get a break.
LindaE maybe your body is getting used to the treatment and taking a step back. Now holding breath till your next scan, scan to scan that's how I see it.
0 -
Hello all! I had another episode yesterday. Mostly nausea and vomiting this time. I got my referral to a G.I. Doc for the end of the month. Can't wait to see her. She's amazing. I also see my main oncologist on this Friday. My feet look sunburned from the Xeloda but otherwise I think I'm doing okay on it. I feel so much more normal. LOL HUGS, Cathy
0 -
Yeah Linda, I'm so glad you don't seem to have the dreaded ascites! And that you are feeling better. It's amazing how "well" we can feel even getting small breaks from symptoms!
Mom, since I last posted a few days ago I am happy to report that I am feeling pretty normal in "that" area! I actually am two weeks out form my last procedure and no symptoms so far! My Onc thinks the Abraxane has cleared up the ascites. I am nervous though as he made me take a two week break from Tx so the neuropathy issue can clear up. Hope the ascites doesn't come straight back.
Cathy, You have to wait until the end of the month to get help for the nausea and vomiting?? I hope not, it sounds like a misery. Glad to hear you are feeling more normal though!
As for me, still walking with a walker due to the weakness and neuropathy but hope the two week break fixes that. I got brave today and got myself into my car and drove for the first time in a month! I have been so housebound it was heavenly although I only drove a half hour to my old town for a dentist appt.! LOL! If i feel pretty good tomorrow I am driving again to go browse in Macy's or something! A real treat that I haven't done all summer......
0 -
Yeah Artist! It's those little things that make us feel normal that keep us going. I'm proud of all of us that each and every day we get through this. We all know it's not easy. Love, Cathy
0 -
Hi all-
Haven't posted much lately but definitely reading our thread to keep up.
Artist - so happy your ascites is getting better! I know that has the feel so much better.
Cathy - hate that you are having these "episodes." Do you think that the N/V could be Xeloda related vs. a small obstruction? Just wanted to ask as I was on Xeloda for over a year and did have N/V. I also had HFS from Xeloda, which was not easy but mostly manageable.
Linda - you can do this! 2 more Taxol cycles and then we hope you can have a break. Chemo is so wearing!
Also, a shoutout to Blume, Mom, and Dianarose.
Well, I'm in the middle of my 3rd cycle of Halaven. I shaved my head a month ago as my hair was just falling out like crazy. The best news is the Halaven appears to be working. TMs has decreased over 50% in the first 2 cycles. Huge decreases as my TMs are so high. Last cycle (each cycle is 3 weeks - 2 on and 1 off) TMs went down 400 points. Both my MO and I were shocked - I've never had that drastic of drop in my last 3 1/2 years. So far, no real neuropathy. Don't feel great but I'm managing.
Praying for each of you today for peace and comfort. 💕
0 -
Hey Sheri, my symptoms have kind of morphed from the feeling of obstruction to IBS. Could be Xeloda related. Saw my Doc today and had an amazing visit. He is still worried about small bowel obstructions because my system gets so sluggish; changed my dosage of Xeloda to just 1500 mg. twice a day. Will try to up me to 2000 in the future; he's calling the G.I. Dr. to see me sooner and wants me to keep on seeing her. He thinks she is more able to keep on the latest medications for gastrointestinal distress. He will treat me for the cancer portion and have her treat the other symptoms. Sounds like a win-win. He's worried because I continue to lose weight. (sweet talker lol) Thinks my system isn't absorbing nutrients like it should. He apologized to me for the way I was treated. Said he is training staff to do better. All in all I felt like it was a great visit. I have hope! I hope you all do too. Love, Cathy
0 -
Watch that weight loss if you can Cathy. It's how I ended up losing muscle function and energy, along with neuropathy from Abraxane, until I was using a walker to get around. Luckily Onc had me skip two weeks to try and get better. I am walking a bit without walker now although still unsteady as heck. Way to voice your feelings about staff treatment. I'll bet it felt good to be validated.
0 -
Artist - I agree with you. It is amazing how quickly we can lose muscle! When I was on the feeding tube, I needed help walking to the bathroom and then back to the couch. Needed help getting to bed each night. I never thought I would become so incredibly weak so quickly.
Cathy - it does sound like you had a very productive visit! I was on 3500 mg Xeloda - 2000mg in am and 1500 in pm. I seemed to be fine in the morning but the Xeloda did a number on me at times in the evenings. Please share what advice your GI has. These belly mets are incredibly hard to manage! Glad your MO is on top of getting his staff to treat his patients right - we deserve to be treated with kindness, respect and with a sense or urgency, as needed.0 -
Southern - Yay on those TMs!
Mine are still creeping up, we'll see what CT scan shows on 22 Sept.
I couldn't agree more with what is said above re weight/muscle loss. Downhill happens quickly whereas uphill takes much longer. My walker is gathering dust at last! I will be meeting the palliative doc on 20 Sept, hopefully we will be able to address issues faster and get meds to alleviate symptoms faster. I hear the palliative team is excellent.
Cathy - so glad GI will be part of your medical team.
0 -
Good morning all. I feel pretty good but the Xeloda foot thing is pretty bad. The bottoms of my feet look like I walked across hot coals slowly! I'm slathering on Udder Cream and wearing socks. Managed to putter around yesterday and fix dinner and do clean up but it made my feet worse. Staying off them today Doc is calling in another cream to try. It is amazing how fast we can lose muscle mass. I've never completely recovered since I was so bad 3 years ago. I start bouncing back and something else comes along. I'm at 15 years now since original stage II A or B diagnosis. 5 and 1/2 years since stage IV. Proud of me for still being here and keeping my sense of humor. HUGS, Cathy
0 -
Yes, Cathy, the HFS on Xeloda can be bad. I had a difficult time with it. Good for you at 5 1/2 years since Stage IV diagnosis - you have done well fighting this beast! I'm been at Stage IV about 3 3/4 years now - it truly is a constant battle. I have a question regarding when you were on Halaven: how long had you been on this drug before you noticed symptoms of neuropathy? Tomorrow will be my 6th infusion, so I'm in the middle of my 3rd cycle. Every once in a while I notice some tingling in my fingers but it seems to then go away.
I pray everyone is enjoying their day. I had lunch with a friend today. I always feel better the day before my next chemo, so I need to take advantage of it!
Hugs to all!0 -
Hi Sheri, I was on Halaven from the end of September until the end of December. My neuropathy got so bad that I got tingly and numb all the way up my legs into my thighs. It went away after being off a month but I've noticed my toes are numb quite a bit of the time now. I don't know if Halaven worked for me or not. I had some bad abdominal attacks just 3 months after finishing my treatment so I went back on Navelbine which we knew had worked before. Good luck with it. G.I. Doc is seeing me on Sept. 22 instead of the 29th. At least it's a week sooner. All my new clothes I bought during the summer are too big for me now. I'm going to start saving all my clothes because depending on how I'm feeling, the weight has fluctuated a lot the last 3 years. I've given lots away and am now very sorry. LOL HUGS, Cathy
0 -
Thanks, Cathy, for your experience. 6th infusion went fine. I asked the nurse if people normally have troubles with neuropathy on Halaven, and she said she only knew of one lady that had bad neuropathy. She was having trouble walking and they ended up taking her off of it. Otherwise, others she knew were doing fine (as expected) with the side effects. As we always say: there is no rhyme or reason.
I'm having the opposite issue as you: I've gained 15 lbs in the last year, so the fall clothes I bought last year now won't fit. Argh - it's a roller coaster! Weight crept up fast on Faslodex but stable the last 2 months. I liked it when I was 15lbs thinner.
Resting on the couch now. Hugs to all!
0 -
Southern, I sometimes wonder if my walking will come back full strength. My Onc took me off Tx for 2 weeks and nothing got much better although I am walking around my house very unsteadily without the walker. Trying to get up as much as possible.
Yah Linda, on losing the walker!
The neuropathy in my hands goes up and down. This morning my arms were almost completely numb. i also wonder if this will be a permanent affliction. At least I am at the end of a third week without having to have a paracentesis! Yippee, although my abdomen always feels "tight" I try to avoid going in for that.
So I begin another round on Monday and hope I don't lose any of my small progress on the walking.....
I've been getting rid of a ton of clothes since the weight loss but most I wouldn't want back even if I gained it back.
0 -
Cathy and Artist - I'm sure that your neuropathy is very scary. Are there any meds that can counteract it once it has started? My nurse did say I should be taking B6 100mg twice daily to try to prevent it. I don't know much about how neuropathy works and if it can be permanent. Would love some knowledge on the details of it. I have seen a lady getting Taxol (I think) in the chemo room who had her hands in a bowl of ice during her infusion. I was told it was to prevent neuropathy. I was getting Halaven next to her at the time and I asked if I needed to do that too, and the nurse said no.
Artist - I am happy to hear your ascites seem to be clearing up - that is great news! Hoping you feel like eating a bit more to gain some strength.
Cathy - look forward to hear what your GI has to say on the 22nd. Glad you are getting into see one. Seems it takes quite some time to get in to see a specialist of any kind!
Hugs to all!
0 -
Southern: I wonder if you MO and my Onc went to the same school. When I was on CT 7 years ago b-6 was required for preventing neuropathy. Because it was easy to take I kept it on all these years. When putting on Halaven, b-6 twice a day are back in the instructions. I haven't had any sign of neuropathy and my ascites seem to decrease a bit per last scan.
I have been reading this thread but feel I have nothing to contribute yet. So, just hugs to you all. Have a better weekend than days before.
0 -
Does anyone on here find relief with exercise ?
0 -
Hmmmm, never been advised about ice bath for hands but do wonder as it works for cold cap use? Southern, it is scary to think my hand function may never come back as I am a jewelry and fuse glass artist. All this time off work and I can't do much art. It is so frustrating!!! I'm going to buy some B6 tomorrow and try that out! I just don't want him to discontinue the Abraxane as it seems to be working for now. We'll see what happens next week.
Kimchee, as far as the neuropathy, exercise has not helped me in the least.
0 -
Hi all. Just got letter from insurance rejecting genetic testing on my tumor as "not medically necessary." Can't believe my Doc sent in my tissue without preapproval. I guess the fight is on. See Assistant tomorrow and G.I. Doc Friday. Love you all. Cathy
0 -
Cathy they do that, and it's wrong. They sent Dani for a scan, and told us it was ok, BUT the approval never went through. And then one time they sent the blood to a different Lab that is not covered by her Insurance, so it took one year to get it in order. But, she did ask the Dr's office to fight for it, so it was really their headache. As if you needed something else,and what a chutzpah, for them to tell you in your situation that it's not needed. Again, you have to see what caliber this person has, they could have a doc to doc - it's called peer to peer and your doc should explain why this is important. Some times this helps, good luck!
0 -
That happened to me too Cathy and they never got it approved. Good luck, hope it comes through for you.
So had my infusion on schedule. One said even though I "graduated" from walker to cane he wants to see marked improvement next week for another treatment. Was on the steroid high last night so stayed up well into the night tinkering in my shop. Hand neuropathy seems better today but it comes and goes so......
However the Abraxane has kept the ascites at bay for 4 weeks now even with a two week break! Yippee!
0 -
Hi all -
How is everyone feeling today?
Artist - I'm sure you are frustrated with the neuropathy - hope it will subside soon. It seems that the doctors would have some suggestions for this. Yea for no ascites!!
Cathy - this happened to me too when I took the Guardant360 blood test. Insurance processed as out-of-network and it was thousands of dollars for my responsibility. (Of course, my in-network out of pocket was met for the year already.) In my situation, I didn't even think to ask ahead of time about the insurance. Fortunately, Guardant Health only charged me $95. I have no idea where they got that $ amount, but I just paid it. I'm thinking it's a pretty new test and I'm sure they are trying to get doctors to routinely use this and they will eventually get approved by insurance. Ugh - it does make you mad. How was your appointment today?
Kimchee - I haven't found exercise to make me feel better, but it probably would help my overall strength if I exercised routinely.
Hugs to Dianarose, who started Xeloda today, and to Mom, Blume, Cling, and Linda. Sorry if I forgot anyone - my memory isn't the best these days.
I started my off week from Halaven today. I feel like I live for my off weeks just to do normal stuff. Taste buds are still off but have my appetite. I guess that's a good thing - haha.
Take care all - I'm calling it a night. 💕
0 -
hi everyone, I have been away for a while on a camping and walking trip, trying to do what i used to be able to do and getting annoyed at myself for not being able to. I have my blood test today to see if i can start round 3 of ibrance and zometa too. Have been keeping you all in my thoughts.
Southern, just read of your tm drop, that is fantastic news, so happy to read this. Enjoy your week off haloven, hope your taste buds recover.
Cathy, sorry you had to go through hassle. Let us know how it goes with the GI doc.
Artist, so happy about the ascites, hoping the neuropathy subsides really soon for you.
Dianarose hoping for good results for you on xeloda.
Kimchee I try and exercise a bit every day - doesn't always happen. I do find it makes me feel better, in terms of positive attitude, also really helps BMs
Hugs and love to everyone, thinking of you all
0
