peritoneal carcinomatosis
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Sadie, You are so lucky to not be getting any major SE's. Can't believe you work full time!
Southern, Whoa! 4 and 3 is a lot. I started with 3 and 3 then cut myself back to 3 and 2 because the fatigue is just too much. Curious to see what my WBC says on Monday....Finally Went and got some CBD oil for the nausea and it also has an anti-anxiety component without the high feeling. Just tried it so have to wait and see..
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Full time is starting to become a challenge, I have to admit. I am so done by about 3:00 PM but I’m never sure if it’s the Xeloda or the bone strengthener I’m taking. I have to have it an hour before eating in the morning which means I need to be up super early. I’m exhausted. Switching to a monthly IV - can’t wait!
Never sure what folks are referring to with dosage. I’m on 1650mg twice per day. That’s 4 pills in the morning and 4 at night. So far still no major SEs beyond dry hands and some sensitivity in my fingers.
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Hi Sadie - my dosage was 3500mg daily (4 500mg pills in the morning and 3 500mg pills with dinner.) My MO initially wanted me to work up to a 4000 daily dosage but I could never get up to the 4 pill dosage at night. Would get too nauseated. I think the pills are either 500mg or 150mg. I only had the 500 mg ones. Your combination makes sense given the 2 different pill dosages. Hope this Xeloda works for you for a long time. Seem quite a few have success with it. I'm sure you are exhausted working full-time. It certainly wears on our bodies.
Keep us posted, Artist. Sure hope you can get that nausea under control
I'm in bed again today with a nasty cold/cough/sore throat. I was hoping it would be better by now. Thinking it's viral but if it's not better by tomorrow, I'm going to have to get some meds like Z-pack.
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Sorry Sheri you aren't feeling well. Sounds like the virus I had. It's miserable. I lived on hot tea with honey and cough drops. I check in every day to see how you all are doing. Still trying to get strength back after bout with virus. My abdominal area is quiet right now. The abdominal bloating has gone down as well. The Afinitor must be working. I'm so amazed!!! I'm the youngest of 9 and I'm 64 now. I have lost 3 siblings in the past few years. Just got word at the end of the week that my sister, Eleanor, is dying from lung cancer that has already spread. Docs figure she has had it for at least 2 years but went undiagnosed. She is 78. I'm leaving Friday to spend a few days with her. I sincerely thought I would go next so surprised and upset that it's her. All my siblings and my Dad had some kind of cancer when they died. All different types from non-hodgkins lymphoma, to lung cancer (2), uterine, skin, and me with breast. My Mom died after a series of strokes at age 80. My Dad with all his health issues managed to make it to 98. Hope you all have a wonderful day.... Love and hugs, Cathy
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Cathy - I'm so sorry to read about your sister. I hope you get to spend some nice quality time with Eleanor. Sending you hugs.
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Cathy, I'm so very sorry to hear about your sister Eleanor. I can only imagine how shocking and upsetting the news was. So thankful you are feeling well enough to spend some time with her. I'm sure that is exactly what she wants and needs right now.
How long have you been on Afinitor and are you taking this with some other drug? My PA mentioned Afinitor may be my next drug (whenever this would be) but I really haven't heard much about it. Just let me know when you have time as I know you have more important things to attend to right now.
I'm on an antibiotic now. After being so sick all weekend, started coughing up green phlegm (sorry - TMI), so I got my MO to prescribe an antibiotic. Shoot - if I thought it was a bacterial infection I would have saved myself a lot of grief this weekend! Ugh.
Hugs to all my belly-mets friends - wishing you pain-free days ahead.0 -
Hey Sheri, Always have time for my belly buds! LOL I started on half dose Afinitor with Letrozole about the 1st of November, I think!! I had been on full dose Afinitor 5 years ago and could not tolerate it. When my Onc told me that genetic testing of my cancer showed Afinitor might work for me, I sat right down and cried. It made me so miserable the 1st go round. Sometimes feels like the universe has a sick sense of humor!! He convinced me to try it at a lower dose and the nurse convinced him to go even lower. I have been really surprised how well I have done on it. The Letrozole isn't even driving me so crazy this time. I was so sick with the virus that I wasn't sure the cancer issue was better at first. But now I'm sure it is. I think the Onc wants to nudge up the dosage after the 1st of the year so we'll see. I wish when I went to the walk-in clinic they had put me on an antibiotic for the crud that I had. I'm trusting them that it was a virus but I'm with you that what I was coughing and blowing was not normal stuff! Miserable experience!! Take care! HUGS, Cathy
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Heather - I have been a lurker on this thread for about a month. My aunt had ovarian cancer and had a port in her stomach for periomets. It was not standard of care at the time and I do believe she had to roll around during chemo to get the chemo on her organs. This was 9yrs ago. I do know that for Ovarian and Colon cancer that they do use HIPEC laparoscopically I have not heard of patients with Breast Cancer who have done this, but the place that only did it on the east coast 9yrs ago was Sloan Kettering and I think U Penn (my hair dresser had it done and she was quite young with Ovarian Cancer in 2005). I would bring it up to your doctor and possibly seek out a obgyn oncologist or gastro oncologist who does this practice in other cancers. I cannot see how its not at least in clinical trials or being used off label for patients with recurrent periomets that do not respond to chemotherapy or targeted treatments. If you hear or see anything on this for us, please let me know. Its something I have asked about and wondered also. I go to Sloan Kettering but they have no periomets trials. They do have pleural mets trials injecting Cytoxan and T Cells into the pleural space. I could see something of that nature being used on PerioMets at Sloan or a big research hospital. Just adding my two cents.
I have had PerioMets since 2015, first small, went away with Xeloda after only stablizing on a clinical trial and they were starting to create mini-ascites so we moved onto a "known" treatment that worked. I was on Xeloda 10months and came off when a shadow showed over my liver and my pleural mets returned in one lung lining. I was incredibly worse off before Xeloda due to an explosion of cancer while on Aromasin and Affinitor. A fgfr inhibitor trial kept me stable, but considering cancer was on my hip bones, every vertebrae liver, perio lining, ovaries (which were removed), and both pleural linings I needed a stronger punch. The periomets were gone on Ibrance/Faslodex and Carbo/Gem. I got 4mo then 6mo off of them. Halaven I had an excellent response in 1 dose, which is not always good....cancer gone fast, cancer came back fast. I began to have "seedlings" in my perio lining and then after 9 weeks I have had (still do) a 5cm, 9cm, and 3cm Periotumors and 2-3 tumors on my liver around 1-2cm a piece. Navelbine kept them stable and did nothing for my lungs. Opdivo did nothing for anything and I ended up in ICU. Ixempra worked on my lungs but not the periomets, so we added Xeloda again. After two doses we see a clinical benefit from Xeloda in my periomets have less fluid at weekly pleurocentises, pleural mets which get drained from my R lung 3x week, strength has increased, endurance has increase, size of my stomach has shrunk and if I was not so thin naturally it would be invisible (but prior I looked 9mo pregnant ready to burst), and my lab work has improved after 2 rounds of Ixempra with Xeloda and this is my 6th dose of Ixempra. Xeloda seemed to kick Ixempra in the butt and they are working well together as far as I know today.
I guess it was time for me to say "HI LADIES". And briefly tell my story with periomets. We all respond to treatments differently. I would just be patient with a new treatment and ask your doctor how many rounds of the treatment they usually give until the first CT scan. Each drug also has a different response for all of us. I have been dealing with Cancer for almost 8yrs. It took 7yrs for me to accept that tumor markers are meaningless, but a tool. The thing that matters the most is the scan and how you feel physically on a day to day basis.
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Wow! That is quite a resume caite. You have a great deal of fortitude!
retro, What a horrible last few years for you. I am the middle of 7 kids and we've only lost the youngest to AIDS at 31. That was 20 years ago. I hope you have some quality loving time with your sister and feel well enough to thoroughly enjoy the trip.
Southern, I can't seem to kick the nausea but keep getting food down anyway.....cut back to 2500 mg of Xeloda and have a week off soon which I hope helps a lot. Glad you are getting help for the flu/cold!
I get so tired of the paracentesis guessing game. Had an appointment for today but did;t seem to need it so I cancelled until next week hoping the meds are kicking in. By tonight I feel like I am bloating up again. In which case I won't be able to send a whole week. But they are always so booked up getting in is difficult.
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Looking for wigs today ......Hair falling out in hand full. Eye doctor. And getting a second opinion , want to feel better and tired of of having peritoneal carcinomatosis . Wish me luck !!
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Kimchee, best of luck on the wig hunt! There are a lot of cute styles out there. I just have one wig and honestly, I wear cotton caps almost all the time. I don't go to work now and the wig isn't that comfortable to me (and I'm ALL about comfort these days.) It sucks not having hair but worth it to be able to live. I'll be curious to hear about your second opinion doctor's advice.
Hang in there!
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Hello,
My mom has peritoneal mets. These mets do not seem very common! We do not live in the US and our doctors are not familiar with peritoneal mets. What kind of scan (except PET scan) can show peritoneal mets? I mean what kind of scans do you do to track your mets?
Also, what are these ascites? It is some kind of liquid, but why is it there? Can it disappear at all?
Thanks.
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Hi Danzk.
My peritoneal mets were identified through my regular CT scan. They showed up as thickening of the peritoneum, particularly around the liver. The term they used was "suspicious for capsular disease".
I have not experienced ascites at this point but yes, you are correct, it's fluid build up in the abdomen. Fluid production is the body's natural response to irritation. It's the same principle with pleural effusion which is the development of fluid in the space between the lung and the lining of the chest cavity, the pleura. This is how my metastasis was diagnosed as I had a right pleural effusion.
It's actually quite amazing how much fluid your body can produce. At it's worst, I had almost 3 litres of fluid drained from one lung. I don't know this for sure but I believe that some people are more prone to this than others. I do know that my body loves to produce extra fluid. When I had my original diagnosis I didn't think I would ever get rid of the drain from the lymph node removal. It went on and on. But I don't think everyone has the same experience.
BTW.. I'm in Canada. It does seem that peritoneal mets are less common but not unheard of. It seems to be more common with ILC (lobular cancer) but again, in my case I had IDC (ductal cancer). Cancer kind of does its own thing unfortunately.
I hope your mother finds a good treatment that will knock this back.
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Good morning everybody,
I come from Czech Republic (Europe) therefore sorry for my grammar) and my mom has also peritonei carcinomatosis. In my country I think it is also something strange because I was not able to find any experience with this. But thanks to your forum I was able to read a lot of information. Thanks for that !
She was originally diagnosed with breast cancer in 2005 and was 10 year NED. With this new diagnose she has been fighting since January 2015. It was diagnosed by CT scan when was found small amount of ascites in her stomach and several small pieces of met. Then she had a laparoscopy and doctors confirmed that there is a lot of small pieces of mets in her stomach (like a flour). So she started her palliative care. She got 1 dose of chemo however it was too toxic for her and it almost killed her. Therefore MO decided to switch to Faslodex (every 4 weeks) which worked perfectly till now (approx. 3 years). Year ago I found information about HIPEC but onco specialists did not recommend as Faslodex worked perfectly and everybody said that it is a mirracle that she is still alive. Their original prognosis was about 6 months - 1 year.
She eats canabis oil every day which helps her with her health (we, MO and other onco specialist think it works and kill the cancer ). One year ago she had a bowel blockage and since that time she is on special diet without anything which could block her bowel (no legume, fruit with peel, nothing fried, no fresh juice etc). With all this she has no pain and has really nice times.
However 3 months ago markers has started to grow, not significantly but every month about 50 point (from 75 originally to 240 now). MO expects progression of cancer but still wait. Once he decided to stop Faslodex, there is no way back. It is probably different than in USA. She also can not get Ibrance because the insurance company will not pay it and it costs a lot of money
Thanks your posts I decided that the best next step is Xeloda. My mom loves her life with Faslodex, she has her hair and was "off" only few days after injection. Therefore she refuses any chemo infusion in advance. She wants to live, not lie on bed. I understand her but you know I am worry about her and her prognosis. During the last three years I said goodbye to her about 3 times. Luckily she did not give it up.
So thats all my story. I just want to tell you that lot of people all over the world read your stories and you are really supportive women even with bad experience.
Thanks a lot and pray many days without complications !
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Mirka80, I am from Bulgaria. I wish you all the best. Try to look for other alternatives to add to her treatment plan. Is she estrogen positive, ER+?
By the way, those of you who had PET/CT scan - what was the SUV indicated on your scan report?
Thank you for the information, Sadiesserva…!
I am sure you will as overcome it! Has anyone tried eribulin?Thanks.
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Welcome Mirka, that you for your post. We wish the best for your Mom and wish they would give her the darn Ibrance.....
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Hi Mirka.
This is an amazing site with lots of good information regardless of where you live. I hope your mother finds another treatment that gets her another three years and then another...
I have been pondering something in terms of response to treatment and would be interested in everyone’s thoughts. Mirka’s post actually reinforces my thinking. My understanding of chemo is that it primarily targets rapidly dividing cells. But what happens when a cancer is slower growing?
In my case, it was almost 16 years between original diagnosis and my Stage IV diagnosis which implies a slower growing beast. And unlike most IDC, mine has spread to the peritonium, more typical of ILC. I have failed Taxol and Anastrozole (possibly because I was on this for a couple of years as adjuvant therapy), and now, I’m not sure if Xeloda is working. CT a couple of weeks ago came back as stable but it was only a few weeks after the last scan and my body is sending mixed messages.
All this to say that I wonder what my best choice is. If X tanks, I’m leaning heavily towards Faslodex. Not sure how my MO will feel as I think he has also been surprised at how challenging it has been to get this under control. The expectation was that I would do well given how long it was to Stage IV. So far it hasn’t worked out that way... wish Verzenio was available in Canada!
Wishing you all a restful weekend.
Pat
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hi ladies
I am new to this tread.
Just wanted to thanks for all the information provided here.
I am facing this now. It is good you are sharing so new patients can benefit
Thanks again
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Welcome Enerva, sorry you have to be with this exclusive bunch but it is nice to get so much info and support!
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Welcome Mirka and Enerva - thanks for finding us and sharing. We are definitely a small group but support each other well.
Just started cycle 8 (infusion #15) of Halaven today. My TMs dropped another 53 points, a decline of almost 1,000 points since I started in July. This is actually the lowest I've been in about 3 1/2 years. Who hoo - Merry Christmas to me! 🎄
How is everyone else faring as we are in the throws of holiday season
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A warm welcome to Mirka and Enerva!
Southern - that's the best X-mas gift I can think of!
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Sadiesservant, I was reading this thread to check on you guys and saw your question about slow cancers. My onc said that one reason she likes Xeloda for me is that when you take the pill every day, you have a better chance of hitting a slowish cancer in the right phase of the cell cycle than if you use a chemo that is given on a more spaced-out schedule.
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Thanks Shetland. That makes some sense, although we do get a week off on a standard treatment regime. I feel fairly sure this is part of my problem... if you can call a non-aggressive cancer a problem. Lol.
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So I decided to drop the taxotere , and stay on xeloda . The combo was getting to me , I couldn't handle it . Hopefully in a month I will see a doctor that's going to try and help me in peritoneal carcinomatosis department . Wishing nothing but the best for you all this Christmas
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Yay Southern, keep on dropping!
Had the biggest drain ever yesterday. I was soooooo miserable by the time I got there I thought I was going to burst. Feeling ALMOST normal today, besides very sore ab muscles, since it my week off of treatment, (last day Boohoo!) I just pray that this Xeloda kicks in on the ascites soon......it is such a misery.
Anyway hope to get busy wrapping some little gifts and moving around a bit today. Hope everyone is able to get out and about enjoying the Christmas hubbub!
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Xeloda seems to be working for me . My wish is it works really well and then I can get this some surgeon to get in and remove the rest .
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Happy Holidays everyone! So glad to see new people. This group helps me so much and I get so much new information. I am also so happy to see when someone is having great success with a treatment. Wish everything worked for everyone. It's such a crapshoot!! I saw my Doctor on the 15th and found out the Afinitor is really working for me. My tumor marker dropped over a 100 points in a month. I left Friday night to go see my sister dying of lung cancer and lymphoma. We had a great first visit (spent lots of time talking about our childhood) but the 2nd visit she had visibly gone down hill. She is quite feeble. I mostly held her hand and let her sleep. When it was time to leave, I leaned down and kissed her on the forehead and told her "I love you always." She woke up and smiled and said it back to me. So that will be the last memory I have of her. She is 14 years older than me and had a rather tough life with an emotionally abusive husband. She finally left him a little over a year ago. I'm happy she at least had that short time of freedom!! Her boys are taking good care of her. We all have strife in our life. So glad we have each other. It means the world to me to be able to share this with you. Between cancer, that stupid virus I'm still not over, and this trip to see my sister, I am so behind on Christmas. Need to wrap today and buy a little more tomorrow. MERRY CHRISTMAS HUGS and LOVE, Cathy
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Hi,
Is any of you familiar with a drug called
Palbociclib ?
I am to start 3 drugs. And this one is a new one here in Canada. I am only afraid of the side effects. If any of you had taken it please let me know what to watch for.
The other two are:
Goserilin azetate implant and Letrozole tables
I thanks you in advance for any information you may have on this convination of drugs.
Hope all have a great holidays.
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Hi Enerva,
I’m sorry you are finding yourself in the Stage 4 threads now. The trade name for Palbociclib is Ibrance. You’ll find a very active thread dedicated to women on this drug. Some of them have been on it for years which is very encouraging. I had four cycles but my MO and I decided to stop due to low hemoglobin but he is thinking we might try it again, perhaps at a lower dose. Despite the low red blood cells, I found it a very easy drug to take. I had almost no side effects, only fatigue which seems to be common. Everyone is different but hopefully you will have no issues.
I’m not familiar with one of the drugs you are on. Instead of Femara I was on Anastrozole (same family) which unfortunately failed. Currently on Xeloda it my MO is thinking about a switch back to hormonal based treatments, possibly Fulvestrant.
Good luck with the new regime. I hope it beats back the mets.
Pat.
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Checking in to say hello to the newbies and welcome. These women are a wealth of info and support.
Glad to see some of you are having success with your meds. Xeloda was tough on me, stomach pains and Hand foot. I would do it again of I knew it would work tho
I have done a couple infusions since my last visit. The cisplatin was tolerable these last two. I was able to stay ahead of the constipation, finally being told zofran can cause that which I get in premed and pill, and the extreme fatigue seems to have backed off pretty well. The extreme jitters is even manageable!
My counts were up, and then down. Thankfully my onc just cut the Gemzar in half and the cisplatin stayed full strength. Whew. Now I'm on my off two weeks, so I'm off to Florida after Christmas for a few days to enjoy some warmth amd sunshine. Something Wisconsin will definitely not have.
Merry Christmas and Happy New Year to you all, enjoy every minute!
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