peritoneal carcinomatosis
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I had thickening that caused a blockage. Had my stomach pumped for three dam days. Was horrible
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Yikes! That sounds miserable
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Had an episode yesterday. Not as bad as usual. Since lobular mets tend to grow in lines and not tumors, I'm thinking about calling my episodes" peritoneal mets parades." You know, marching along with drums and a big brass band. LOL At least that's what it feels like sometimes. I leave on Friday. I must be absolutely insane to think I can be gone 7 days with no episodes but hoping for the best. I need this time that isn't about cancer with my husband. I will keep you posted. Hugs, Cathy
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Oh joy! I felt human today!! I got laundry done, the fridge and pantry cleaned and straight. Went pre-shopping for appliances, did a paid survey, and ran errands. What a great day. And I felt almost normal. The comparison of today to the last two weeks is amazingly different.
I am so happy that I am feeling this way because my trip to Florida with the hubby is tomorrow. It should be nice and near normal
Dr gave me a mouthwash for the mouth sores, but they are almost gone for this round. Had to order lidocaine separate and get other stuff to make it for the insurance to cover anything. I hope medicare is better. 🙄
The only bad thing about today, my hair is falling out in clumps now. Boo.
Hope everyone is doing well, or the best they can. I am going to enjoy this week immensely before I'm back down for the count. Hopefully we start Keytruda with my next Halaven. 🤞
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Milwmama- so happy you had a great day!! Sorry about your hair. Have a great time in Florida
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Hi all! I’m back from my 6 day Seattle trip. Boy, was it wonderful! The weather was really quite beautiful when I was there, which was lucky as several days before i got there it rained every day. So nice to get away from reality and stress here at home. I was able to focus on visiting with my brother, nephews, aunt, uncle, and several cousins and their families, and relaxing. Tough to come back to chemo today. On Halaven Cycle 14 now. TMs dropped 5 points, so that was quite good news as last time it increased 25 points. MO said stable is good. Of course, I’m always looking for declining TMs but my TMs haven’t been this low in 4 years.
Welcome to the new women here. I’m so glad you found us. I think someone asked about if any of us felt the thickening. I didn’t feel anything unusual. In March 2014, I started to have terrible heartburn, then vomiting, and ended up couldn’t eat or drink due to a 100% blocked duodenum. Didn’t eat for most of a year and was on a feeding j-tube for almost 9 months while on chemo hoping the chemo would shrink the out-of-control cancerous tissue. Bottom line: cancer never shrunk and I had major surgery in early 2015 to bypass the duodenum (moving intestines from right side to the left side) to allow me to eat. My situation is very unusual but I also have thickening in the stomach and transverse colon per my last CT scan. I haven’t had any blockages since my surgery though. (Surgery didn’t take out any cancer as it is lobular and embedded in my tissue. Couldn’t take it out if he wanted me to live.)
Milwmama, I wanted to let you know that I thought my first cycle of Halaven was the worst for side effects. I’m so happy you had a good day. I’ve never had mouth sores on Halaven but I did have a lot of hair loss - probably 60-70 percent. Mostly after 2 weeks on the 1st cycle, if I remember right. I have to wear a cap or wig and shave my hair close to the scalp. Enjoy your trip to Florida.
Cathy, hang in there. I will pray for “no episodes” for your trip. You need a break!
Goodnight all - praying for each of you. 💕
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Hi All! Packing for my trip. Been shopping for some new clothes, mostly online. Got some cute things but I've decided I'm more concerned about being comfortable. Taking mostly old and comfortable outfits and shoes. This has been the week that I'm getting progression of muscle spasms in my legs, ankles and feet. Kept me up quite a bit last night. Taking a heating pad with me as that is about the only thing that helps relieve the spasms. I experienced this before also while on Letrozole. I know walking around the French Quarter will make it worse ... I see hot showers directed at my legs in my future. Sheri, so glad you had a great time in Seattle. The weather has been beautiful here. I'm looking forward to doing something other than doctor visits. I tease my Doc that he's the only guy in my life I still dress up for. Glad he has a sense of humor. Wondering when I get back if he will talk to me about that clinical trial. I will keep you posted. Talk to you all after my trip. HUGS, Cathy
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Love your happy post!
Need to know from any of you on Abemaciclib and Faslodex of success. Do the tumors respond to this regimen?
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Cathy - have a wonderful trip and I’m praying for “NO EPISODES!”
Twylamira - I’m sorry but I have no experience with this combo and I don’t recall anyone else here on this thread being on this treatment either. You may want to check to see if there is a separate thread for this specific treatment, as I’m hoping someone else on this forum can answer your questions. Wishing you the best
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Hi everyone,
My name is Joelle. I have ILC mets to bone marrow. I am just going to dive right in.... For the first 6 months last year I had very loose stools that then turned into 6+ months of on and off constipation. I am getting concerned I have peritoneal mets. I have an appointment so will find out for sure but would like to hear from all of you as well.
What were your symptoms? Lately I am having severe bouts of cramping, like menstrual cramps. Tylenol does help greatly. I also have some sharp shooting pains that feel are coming from my uterus area/? No bleeding, no discharge but am constipated. I am slightly bloated and my tummy is sore to push on it....but, it has always been slightly sore due to my surgery from DIEP. I am not vomiting but have noticed I get full faster after eating. Any input would be great, thanks so much!
Forgot to mention i have had a 6cm ovarian cyst for 10 years, many fibroids as well as endo.
I am also entering menopause...
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hi jojo68
Welcome, it is hard to say cuz those symptoms could be many or nothing. I do have peritoneal carcinomatosis and I dis have similar symptoms but again don't asume anything till the doctor conforms? When will you have an exam? Maybe you will have a CT? Just try to take something to help your digestion like natural probiotic in the min time. I hope it will be nothing try to keep positive and ask your doctors to do an exam to find out ?
Good luck
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Hi jojo68 - I agree with Enerva. Your symptoms are similar what some of us have but I also had terrible heartburn, nausea, and vomiting. I hope you are able to see your MO soon and get some testing done soon. I had an endoscopy with biopsies that confirmed my diagnosis. I’m not sure what current treatment you are on, which may also be the cause of some of your side effects.
Keep us updated - we will be here to support you.0 -
Jojo68- I had nausea, severe acid reflux that made me choke and no vowel movement for ten days. Ended up with a blockage and had my stomach pumped for three days. Beware of the symptoms. I too had cramps like period cramps even though I don’t have ovaries.
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Hello Dear Members,
We wanted to let you all know that we heard from rara_avis's (Erica's) husband reached out to us to share that Erica has sadly passed away.
Her last post here was Jun 9, 2017, at which time you will see that she said she was not feeling well. We lost a dear woman.
Gentle hugs to everyone who knew her,
The Mods
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Here is the obituary shared by her husband:
Erica Zissman, age 66, of Waltham, Massachusetts, died peacefully in her home on Wednesday, February 28th. Erica was born on April 11, 1951, in Philadelphia. She graduated from the Philadelphia High School for Girls in 1968 and from Brandeis University in 1972.
A woman with an outstanding gift for forming and maintaining friendships, Erica had friends from all spheres of her life: junior high, high school, and college; gardening; her Waltham neighborhood with its sweet block parties; her Balkan music band, Evo Nas; Balkan and Scandinavian music and dance; bluegrass; world traveling; bird watching; and singing. She had a large family of friends and colleagues from her various work places: Meditech, CoMed, Progress Software, and Beth Israel Hospital. Among her newer friends were those who, like her, were fighting cancer.
Erica was a past president of the League of Women Voters of Waltham; a member of the Waltham Land Trust, the Waltham Historical Society, and WATCH CDC; and a volunteer for REACH Beyond Domestic Violence, for which she received the Ruth Bigwood Voice of Justice Award.
Erica loved cats, Sudoku, crossword puzzles, drawing, classical and early music, pottery, children's books, reading, languages, photographing birds and gargoyles, snorkeling, and beach combing for sea pottery and striped rocks. She loved throwing large, wonderful parties that reflected perfectly her appetite for life. Even in her last year of life, she managed to go bird watching on the Amazon River. She lived life large. She is beloved of many.
Erica was the daughter of Harriet Russcol Zissman and Dan Zissman. She is survived by her husband, Morton Isaacson, her brothers, Joshua and Adam Zissman, and her mother, Harriet Zissman. Preceding her in death were her father, Dan Zissman, and her sisters, Beverly Zissman and Merrill Zissman Allen. She prized her relationships with her large extended family and was the archivist for old family photos.
A celebration of her life will be held this spring. Those wishing to honor Erica may give donations to Breastcancer.org, which sponsors an online forum group for those with peritoneal carcinomatosis from metastatic breast cancer. This was the somewhat unusual form of cancer Erica had, and she found the group to be very supportive and helpful. Within the group she was known as rara_avis, a rare bird, indeed.
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Mods, thank you so much for letting us know about dear Erica and thanks to Erica's husband for reaching out to us. Sincere condolences to Erica's husband and her entire family - it's clear by her obituary how special she was to so many. RIP, Erica - I know you are soaring today above us. 💕
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Day 3 of Halaven and Day 1 of Keytruda. Got approval from Merck for a year of Keytruda, yay!!
Hoping SE aren't as bad this time. Will keep a close eye on me as my good organs and cells that can be attacked because of the unmasking Keytruda does.
Shaved my hair WAY down. Was falling out in bunches. Probably have 20% of my hair left
Florida was so nice. Got some much needed time away from reality and a good amount pf Vit D.
Funny story-was feeling so normal one day had a poke bowl. Forgot about the no raw meat thing. My body on the other hand did not, and reminded me, alot
Oops.My belly seems to be much less bloated and pain subsiding. Hoping to have a good scan next time around in July.
Sorry to hear we lost another sister :,( Sick of hearing it.
Hope the rest of you are well.
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My Dear Metsisters, I think about you so much more often than I have the time or energy to write. I hope you are finding moments of calm and joy in your everyday. It's been wonderful to read about your various vacations here and there. I am getting ready for a bit of adventure myself...going to my old stomping grounds in LA area to see my Dad, hang with my sisters, and put my feet in the ocean! It'll be my "off-week" of Navelbine and I hope I'll be feeling okay most of the time. I'll finish the trip up by flying into Albuquerque to visit my daughter and her family, where we'll celebrate Mother's Day.
I wish I had some indication that the Navelbine/letrozole combo is working. I'm now draining more than 5000ml/week of ascites- almost every day. My pain meds are holding me pretty well and I've made peace with taking them. It really does up the quality of life. I get leg/feet cramps intermittently. I wonder if my electrolytes are out of whack from the massive loss of fluids every day. I had tumor markers drawn yesterday and am wondering what they are up to. Scans in early June will help guide me in the next direction. Since the Ibrance/faslodex stopped working a little over a year ago, I've been on three treatments with no success. If this one doesn't slow the dragon down, I will think hard about whether or not to try another.
Meanwhile, every day is indeed a treasure. I'm going to plant a few more things in my garden today. I'll sit with some tea by my little pond and watch for birds. I'll snuggle my pups.
Love and hugs to each of you, Orina
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Hello All! So much happening while I was gone. Hard to take it all in. Can't believe that Erica is gone. I was missing her posts and wondering what was going on with her. We have all become so important to each other that when one of us doesn't post, it really feels like part of our heart is missing. Miss you rara_avis. Welcome jojo68. Hope this group helps you in so many ways. Sorry this is something you are dealing with but hope you find that you are much stronger than you ever realized and do everything you can to kick this cancer's butt!! My trip was amazing. Had a wonderful time seeing my friends in Houston. Did a New Orleans' French Quarter and plantation tour (Oak Alley) -- both tours on buses. Had an amazing time. My husband and I really enjoyed our time together but a little sad that this is probably our last big trip together. I did have an episode (marching band) that started out not too bad but I had a hard time completely kicking. Every jolt on those buses felt threatening. Thank goodness for the medication the Doc gave me. It kept me from going over the edge into the vomiting and bad symptoms I can get. Stayed uncomfortable but able to function. We moseyed around the French Quarter. Never walking too quickly....just enjoying the sights and taking it all in. Everyone is so friendly there. It was a good reminder to live in the moment. I actually met a woman on the plane coming home who works for a big pharmaceutical company in cancer clinical trials. I introduced myself and told her she was looking at the face of one of the people she was helping and that we thank her so much. I see my Doc next week and am going to ask him about that clinical trial I was told about..Cytoxan and Interferon. Love you all. Cathy
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Hi all! Just wanted to check in this Saturday morning.
Milwmama - sounds like your Florida trio was wonderful. Hoping this combo is the ticket for you.
Dancing - thanks for the update. Sorry for your tough times right now, as the ascites is so hard on the body. Your upcoming trip visiting family sounds relaxing and fun. Happy you are able to get away from it all for a bit.
Cathy - glad you enjoyed your Houston and NO trip and you were able to make it through despite your episode. So important to take advantage of life’s goodness and adventures when we can.
Next up for me is my oldest son’s college graduation next weekend. Thank goodness it will be my off week of Halaven, which is great timing. Lots of family coming from out of town. Takes a lot of energy to coordinate hotel, dinners, clothes, gifts, etc. Honestly, I’m tired, but I’m almost ready.
Hope each of us can enjoy some weekend time (i.e. no doctor’s appointments, scans, procedures, etc)!
💕💕💕
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UGH!! Just feeling kind of down. Maybe the after the trip blues! lol Hard to go back to "normal." Glad I stepped out of my comfort zone though. My husband and I had a great time together. It's hard to find food in New Orleans that's not too spicy. Had clam chowder one night and shrimp and okra gumbo on another. Ate some chicken alfredo also. I managed to get myself in trouble on another cancer website because of opposing religious views. So glad we are able to keep this site mostly secular. I did make a new friend however so good things continue to happen in spite of the bad. I am a firm believer that whatever you can do to help get through this cancer battle is ok. But don't try to tell me what I have to believe. Must be the sixties girl in me. lol HUGS to all of you. Onward and upward..... Cathy
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Thank you all for the warm welcome.
I have an appointment with a new oncologist this coming Friday, so I am hoping for answers.
I had blood work done today and am waiting to hear back about when I can schedule an ultrasound.
I am sure what I have are ascites. I am so uncomfortably bloated, and can hardly eat a thing or I feel like I will explode.
I hate this, and am feeling so damn down and depressed with moments of crying. Of course, I fear the worst, feel like my whole middle half is filled with cancer...I am sure you have all been there and can relate. I started major carrot juicing this week which has totally remedied the constipation. My main issues now are bloating (ascites?), early satiety, sometimes some heartburn in the stomach region....and really weird sharp pains when peeing! The peeing thing is so weird. I feel like my bladder is on fire and have sharp pains in my right side of my groin.
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Ah Jojo, so sorry. Ya, a lot of us have been through that too. It usually is ascites. Not only does it make you feel bloated and full all the time but it puts pressure on everything including your organs. The only thing that really helped me was finding a chemo treatment that worked. For me that was Navelbine. Try to find things (tv show, music?) that gives you joy while you get through this. Let us know what the new oncologist says., HUGS, Cathy
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So sorry, jojo, that you are so miserable. I really hope they will schedule that ultrasound soon. Many women have said they feel such relief when the ascites have been drained, but not sure who would schedule that? I'm assuming that could be scheduled after the ultrasound, if necessary. Ugh - nothing is easy.
Cathy - I think it has been hard for me lately to stay upbeat, but you seem to manage the good with the bad quite well, which is really great. I find myself looking forward to certain big occasions or vacations but then it can be hard at times to find joy in my daily life. Daily life has seemed like a chore to me recently with so many doctor appointments. My youngest son has been quite sick with his chronic illness and I'm exhausted!
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Sheri, I'm so sorry. I had no idea your son has a chronic illness. It's one thing for us to get through our cancer battle, it's another thing when it's our children having issues. My beautiful daughter, Amanda, has OCD. Turns out when she was little she would continually check her backpack while walking to school along with a myriad of other behaviors that I knew nothing about. When as an adult she finally realized that not everyone is like that, she told me about it. I felt like the worst mother ever that my daughter could be going through something like that and I didn't know it. She's in her 30's now and has really found herself. She brings me so much joy. I just hired someone (friend of neighbor) to come in every other week and clean my house. I'm so excited and can't believe I didn't do this sooner. I firmly believe that house cleaning should be the last thing we have to worry about at this point in our lives. I feel so relieved to have it handled. Amanda was dong a lot of cleaning for me but I would rather just have time with her to do fun stuff. Sheri, I'm so sorry you are feeling down. Wish there was something I could do to help. You are such a very special person. I always look forward to reading your posts. Hang in there, honey. We all need you! HAPPY MOTHER'S DAY by the way. Hope you do something special! HUGS, Cathy
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Cathy, thank you for your sweet post. You made me smile and I can tell you understand where I’m at today. It was a boost I needed - thank you! 💕
I’m just feeling a bit overwhelmed right now. As all of you know, it’s a lot to get ready for big milestone events and with me not feeling my best plus my younger son being sick, I’m ready to catch a break. On a different note, I too have someone come clean my house every other week and have for 15+ years. Before it was because I had a very demanding job with 2 kids and no extra time, and now it’s just because that’s not what I need to be spending my time or energy doing. You are right, Cathy, it’s a relief not to have to worry about it!
Very happy to be in my off week. I do have arthritis and I’m feeling it in my knees right now. We leave to go to my older son’s college graduation tomorrow- about a 3 hour drive away. They have 2 graduation events - one Friday night outside for all the graduates and one Sat, which is inside and where individually he will “walk the stage” with the other College of Business graduates. I’m worried about the outside one tomorrow night as it’s going to be dreadfully hot (high of 87 degrees tomorrow) and it starts 1 1/2 hours before sunset (near 8:30pm.) I’m afraid I will be drenched in sweat - wig and all! I do not do well in the heat. Then Mother’s Day will be spent packing up my son and heading home.
I’ll check back in next week. Hope each of you enjoy the weekend and Mother’s Day! We all should celebrate (and be celebrated) for still fighting this disease every day!! I appreciate you all so much!
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my Onc called to tell me that Ibrance/Letrzole did not work on my peritoneal mets. I have yet to read the CT report. But Onc suggested Ixempra or Adriamycin/Cytoxin as the next treatment. Has anyone tried either of these treatments? Chemo has not worked too well on my case before, however my IDC with lobular features now changed to ILC, and ER from 100% down to 29%, I guess chemo is my future. But I hope to try some newer chemo . Any suggestions?
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Hi Cling, Adriamycin/Cytoxan are the very first chemo's I was ever on. They really kicked my butt in 4 cycles. I was bald as a billiard ball which wasn't so bad but it was winter!! LOL I don't know about Ixempra. I talked to my Doc today about the clinical trial mentioned to me. I just don't know how I feel about it. Doc wants to raise me up to the full dosage of Afinitor. My tumor markers did go down some but not enough to make him happy. If I don't do the clinical trial, I will have to bump up the dosage. Afinitor does seem to be working as long as I can stay ahead of the episodes but there won't be a higher dose to bump me up to eventually. Have any of you ever done a clinical trial? I read through the paperwork and I got the impression that some of it won't be covered by my insurance. I think it would be stupid of me to switch to something that isn't covered. I'm going to check on that tomorrow. Did anyone else find this? That you ended up stuck paying for tests, etc? I would quickly wipe out our saving with the going rate of tests. Any info would be greatly appreciated!! HUGS, Cathy
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Cling, I was on AC first time I was diagnosed, just like retrocath. Tough chemo but it work on many. I really don’t know anything about Ixempra.
Cathy, I haven’t done a clinical trial but I always thought costs were covered by the sponsor of the trial. That may be very naive of me - just what I have always assumed. Please let us know what you have found, as that is important information! Too expensive to not be covered by insurance, that’s for sure.
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The clinical trial would require me to get a bone scan, CT scan, PET scan and MRI...all at the beginning of the trial. They are checking to see if the clinical trial would pay for all of it. I think they hope that insurance will pick up the cost of at least one of them as regular care. I haven't had a scan in over a year. It looks like what they didn't take into consideration is the fact that my peritoneal mets (which is where my cancer flair is right now) doesn't show up on scans. I don't know besides my symptoms and tumor marker test they would be able to know if the clinical trial meds are working. That could disqualify me from this or any trial. I didn't hear back today so hopefully will on Monday. I've decided if the costs are covered and I qualify that I will do the clinical trial. I want something positive to come out of me having cancer. If it helps find a cure or treatment for someone else then somehow what I'm going through won't have been for nothing. I will keep you posted! Have a wonderful weekend and Happy Mother's Day! HUGS, Cathy
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Hi Cathy,
Your comment interests me as scans have seemed particularly useless in my case although, following symptoms they reported “thickening” which was suspicious of capsular disease. At times I have wondered if I was just becoming too paranoid. Taxol was a fail, I had progression on Arimidex and Ibrance which led to the diagnosis of potential peritoneal mets and, while my MO felt I looked good, I never felt that Xeloda was working as the weird pains in my belly would not quit. Now, on Faslodex, things have calmed down. I have some twinges but nothing like I had in January/February. I will be interested to see what my next scan says as they have been coming back stable since October but I feel that I was far from stable until recently.
Hope you ge5 your wish on the trial and that is amazing for you.
Pat.
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