peritoneal carcinomatosis
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Hello Everyone! Feeling guilty because I didn't have an episode this week. I upped all my medications I take when having issues and it seems to have really helped. 2nd treatment tomorrow! Went to Vegas 2 years ago to see LOVE. My husband thinks it's time to go again. We'll see. Hope you are having a good day. Cathy
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Retrocath- may your 2nd infusion go great and the results be stellar.
Hummingbird- hope everything is going well in your trial. It's such a long day for you.
I went in for more chemo today... 10 minute infusion and my labs look great. We went for crepes afterwards and they were yummy. No nausea, just thirst and fatigue. Draining in the morning and that helps keep the gut pressure down. My abdomen feels funky and my joints hurt but a pain pill takes care of that. Onward... Tumor markers come back tomorrow.
Blessings to all the belly buddies!
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Tumor Markers came back 200 points higher than last week. Apparently this isn't working either.
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Well shoot, Rosevalley!! That was not what we were all hoping to hear. How soon do you see your Onc? Wrapping you in a big hug! Cathy
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Rosevalley, I really hate to hear this news about your tumor markers! I know that you don't get scanned, so how does your Onc decide whether or not to change the treatment? Does she go by the way you are feeling? Or strictly by the marker numbers? This see-saw ride we are on is exhausting! Wishing you comfort and clear thoughts as you wait to see your onc. Sending hugs.
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My oncologist is so sweet she emailed back and said she would increase the chemo to a higher dose. I am feeling ok and I am on a lower dose so she will up it next week and we will see. QOL is most important and in this case I am not sure the markers are in sync with my gut. So we will try a week of higher dosing and see what that gets us. I mean I am not puking and I can eat and carry on. Thanks for the sympathy Hummingbird. How are you doing in your clinical trial?
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Rosevalley, that sounds like a good plan! Hopefully the higher dose brings those markers down. And maybe you will feel even better as it does! That was so nice of your onc to email you back. Thanks for asking - I'm doing well on this trial and will have a CT scan next Thursday to see if the drugs are working. Keeping my fingers crossed!
Cathy, how did you do with your second Halaven infusion?
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Hello Everyone! I had a great day today. 2nd treatment went well. My blood test was great (for me)--always anemic but otherwise not bad at all. So my Onc tested a bunch of different kinds of tumor markers--the one that came back elevated was ovarian cancer. He said that is a good sign to him that something is going on in the abdominal area. It wasn't really high-- 56 when they want it to be below 30 --but that is my very 1st elevated tumor marker in 14 years of fighting cancer. This lobular cancer doesn't make it easy on them does it? Rosevalley, so glad your Onc. called you today. Hope the higher dose makes a big difference. My dosage was upped today too. Hummingbird, wishing you continued luck with the trial you are on. Wish you all well! Can't believe how quickly it has become fall. LOVE and HUGS Cathy
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Hi everyone!
I continue to slowly wind down, waking up to connect, then falling back to sleep. A lovely existence! The autumn air smells so fresh & we might get some rain after many months without any drops falling (fog condensation doesn't count).
Cathy, CA125, the ovarian cancer marker, is definitely tied to abdominal and pleural mets for me. It measures a protein that can be elevated in any ovarian problems, including benign as well as malignant. So, it's not terribly specific for ovarian cancer, but can be helpful for some.
Unlike most of you, my cancer is ductal, not lobular, but nothing I've been through is typical, so we don't draw any conclusions based on my experience.
Rosevalley, I wrote on your personal topic - I vote to stay on your current treatment because TMs are only part of the story. It seems more important to be able to eat and not have nausea and vomiting. Your oncologist's advice to raise dose is probably good, as long as you don't get unwanted treatment effects. Such a delicate balance.
Hummingbird, so happy you are doing well with your clinical trial. Did you ever tell us what it is? I know others with MBC keep their eyes on every clinical trial option and results. Whatever the cause, your good effects are magnificent.
Congratulations!
warmest healing wishes for everyone, Stephanie
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Stephanie, I looked up the study I am in on ClinicalTrials.gov - the identifier is NCT01226316. The drug is AZD5363 and I am in the part that also gets Fulvestrant (Faslodex shots). Three mutations I have are being targeted. I know you have had to rest and sleep more, but you continue to offer support and good wishes - you are so caring. Thank you. I hope you are comfortable. You are always in my thoughts.
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Thank you Stephanie for all your caring and support. With all you are going through, you still take time to spread love. I hope you realize the impact you have made on all of your cancer buddies. We can never thank you enough. We are all with you in spirit wrapping you in love. Cathy
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Hi, I am new to this thread. I started reading posts from the beginning and became very overwhelmed. I have mets to the abdomen and recently got out of the hospital for a blockage. Pumping of the stomach for over two days is an experience I don't want to repeat. On a dam full liquid diet 😖 Never thought I could be so hungry 😓. After reading what everyone has gone through and are continuing to go through I am terrified
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Dianarose- it is terrifying and scary and depressing. Been there and gone from puking my guts up and being in the hospital with a partial blockage... couldn't get the NG tube down (boy did that suck). Liquid diet for months. But then they hit some chemos that worked and beat the cancer back. So it's kind of a roller coaster ride of being able to eat and do things. You have only been through Aromasin and it seems you have a TON of options to fight this cancer. SO get in and demand to get Faslodex or any number of options. Once that kicks in you will feel much better. You will be here much longer then you think. I understand your fear and this is serious but there are serious options to allieviate your misery!! If your oncologist won't be aggressive get a new oncologist. Vent here and you have our support! Hugs!!
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Dianarose, Welcome to our small but very supportive and wonderful belly group! I'm so sorry to hear of all you have gone through; that certainly is very difficult. I agree that this is terrifying, but hopefully you will gain information and strength from us. I see that you have ILC like many of us here. We share our experiences and I know that for me, and I'm sure everyone else, this thread has been extremely helpful and the place we feel safe to say anything we are experiencing. Hopefully, as you see that although we all have many very tough days, there are also days of comfort and enjoyment. You just had a rough hospital stay and a scary situation. I am sending hugs and wishes that you are now beginning to gain your strength back and will soon be feeling much better. Please keep us updated. I will be thinking of you.
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Hey Dianarose! So sorry you are going through this. Atkins shakes over ice with coffee and a dose of Miralax is how I start my day. It seems to soothe my system. Getting constipated brings on the worst of my pains so I try to keep my system moving. I can eat also. I just have to be careful what and how much. I know you must be really scared. When I was in the hospital 18 mos. ago with the same symptoms, drainage, etc. the hospital doctor told me I would just keep coming back and would get progressively worse. Scared me to death. One year later I was touring the French Quarter in New Orleans with my daughter. Take it a day at a time. Really try to enjoy those times that you are feeling well. LOVE and HUGS, Cathy
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Rosevalley, I'm just so bummed to hear that the current dosage wasn't working but sounds like your Onc is thinking in the right direction and I sure hope the elevated dose kicks in and is just the right balance for you. QOL is the goal and Stephanie has a great point about TM's not being the end all of decisions. You are one tenacious lady.
Stephanie, I look forward every single day to your posts on any of the threads. I have been away for a week or so but, as always, found it so comforting to come back and read your words. I think of you everyday and send healing wishes your way. I am enjoying the crisp fall air as well!
Hummingbird, I am so happy to hear that the trial is going well. I hope your Tx goes on successfully for a very long time. There is nothing greater than getting out to enjoy a special trip with loved ones and feel like your old NORMAL self! Vegas by the pool sounds like a great idea to me!
Dianarose, Your experience most definitely sounds terrifying and like true hell. But please believe the words of these wonderful women when they say that things can level out and improve for the much better. There will be hard times but there will also be many good times when things are going well and you will feel joy and hope again.
Cathy, Hope that 2nd treatment goes well and thanks for spreading sunshine with you cheery attitude!
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- Rosevally-omg they couldn't get the tube down! What did they do? They gave me some versaid(not sure I spelled it right) and my DH said I didn't even gag. Love that drug because I don't remember it. Even on this liquid diet my stomach gets all bloated and contracts. Can't say it's extremely painful but very uncomfortable. Not sure if it's because my stomach was stretched so far for so long, the pumping of my stomach or something else causing this.
- Hummingbird- thank you for your kind words
- Retrocath- so glad you are proving the docs wrong 👍 I haven't had any problems going the bathroom on this diet. Did before though. It's weird.
- Artisrathea-thanks for your encouragement. It means a lot😘
- I have been really down. My husband and I have only been married just over 2 1/2 years. He is so wonderful and I want more quality time with him. He slept in my hospital room for 5 days and never left my side. Thanks to all of you
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You are very welcome, Dianarose. Hope you feel less and less down as you begin to feel better. Wishing you many more wonderful years with your husband. He sounds like a great guy.
Artist, I am So glad to see you back posting. I was worried. And as usual - you are so caring to come here and check up on us. I hope you are feeling ok and were just busy?
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Dianarose- your hubby sounds wonderful and I hope you get some more quality time with him that has you feeling better. I just feel that given your ER+ and you haven't used a lot of therapies you have many more options to buy you time. Feeling down is kind of normal. Don't be shy about using antidepressants if you need them. I also want to tell you about a drug that really helps keep my gut in motion and food moving along. It was suggested I try Reglan because it is anti nausea and it aides in gut motility moving contents of the intestines through. It really works and it's cheap. It has can have nasty side effects if you take it long term. I have taken it for 9 months and so far no side effects but good ones. Ask your onc if it's something that might benefit you.
Again welcome and may you have many lovely days with your hubby. Hugs your way.
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rosevalley- they had me on Reglan while I was in the hospital but took me off it when I came home. I think because I am on the liquid diet and Reglan makes your stomach empty quicker. Maybe they will put me back on it when I can have food.
MO took me off Aromasin and put me on Letrozol. Will go on some kind of treatment after surgery. Hoping to get rid of the naphostomy tube. Some times the tube comes apart where it connects to the bag. Did that yesterday when we had company and had to go change my clothes. Has happened a few times in the night then I am up stripping the bed
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Hi ladies! I would like to join this conversation, as I am in a very similar boat.
I have mets to the stomach and my duodenum is completely blocked. I couldn't digest any food or water for almost 2 months from late March to May 2014 (was throwing up EVERYTHING) - had to have IV fluids 3-4 times a week to keep me alive. Lost about 45 lbs or so in 2 months. My gastroenterologist here in Dallas at the time (who was referred to by my oncologist) kept saying it was not a recurrence of my ILC cancer, after doing 2 endoscopies with biopsies. After getting no real answers, I went to Mayo Clinic in Rochester, MN in May 2014, where they diagnosed my cancer recurrence to the abdomen wall and they put a stent in my duodenum to open it up for me to be able to eat & drink. Opening of stent lasted 2 months. Started vomiting everything again, which landed me in the hospital. Then I had a "temporary" J tube (feeding tube) placed through my blocked duodenum in early August 2014 into the small intestine for liquid nutrition while I was on chemo. I was told the chemo should shrink the tissue in the duodenum to allow me to eat/drink again. (It has never happened to this day!)
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(continuation from previous post)
In Feb 2015, I couldn't handle the feeding tube any longer and was referred to a surgical oncologist. Had surgery in March 2015 to move my small intestine from right to left side of stomach (avoid duodenum) to try to allow me to eat. It worked but was a dreadfully painful operation and was in hospital for almost 3 weeks. Feeding tube came out in mid-April 2015. Recovery period was several months and ate very small portions for a long time. I eat normal portions today and am so thankful for the successful surgery. Have been on Xeloda since May 2015 but now my tumor markers are rising and I think I will be changing treatments when I see my oncologist again on Oct 11th. I just did a CT scan and have progression in the abdomen.
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Sorry - I can only type so much and then my IPad slows down incredibly!
I should clarify that I started Faslodex in Jan 2014 as my tumor markers were rising and they found cancer in 5% of my bone marrow after doing a bone marrow biopsy. Nothing else showed up on CT scan or bone scan at the time, but now know my ILC was hiding in my abdominal wall, but just didn't show up at that time. Then it became a huge problem in late March 2014, when I couldn't keep anything down.
Not sure exactly what treatment I will be going to - Onc mentioned Ibrance & Letrozole. I'm not sure though if that will be his final decision. Any comments/thoughts would be greatly appreciated.
Thanks all! You are each an inspiration to me
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Southernsurvior- you have been through so much! So sorry. I have thickening of the duodenum. Had a blockage there and in small intestine recently. Having consult for surgery this week. Glad they could help so you are able to eat again. My primary asked if I wanted to try cannabis oil so she gave me my card so I am legal. Been doing the research on the dose and will start today and keep a record.
Had to go to urgent care yesterday. Woke up peeing blood and it felt like I was peeing razor blades 😖. Stick test showed no infection so it has been send out for culture. My last infection was antibiotic resistance so need IV antibiotic. Won't give me anything until culture comes back and then would most likely have to be admitted 😓. When we were there the nurse was telling us her uncle had stage 4 prostate cancer and did cannabis oil for 8-9 months and now they can't find any cancer. Has anyone tried this in the dose recommended for cancer?
By afternoon I was not passing any blood and no longer hurt to pee. Just can't figure it out😖
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mornings are really tough. A lot of gas and bloating. I can feel my stomach contracting. Does anyone else have this and if so what helps?
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Hello and healing regards for everyone,
Sorry for my absence!
Spent all day yesterday sleeping, then trying to catch up with my loved ones - Ha!
I'm sad and grateful that Diana Rose and Southern Survivor joined us. Sad, because there are odd sufferings with peritoneal mets. Grateful, that we can be here to support one another.
Welcome you too and thanks for already adding to our conversation about this rare presentation of MBC.
Diana Rose, I realize that my story might be terrifying, especially if your goals are to avoid hospice and death. Since I'm headed that way soon...well, I might seem terrifying too. I'm not though! When I joined bco ten months ago, I'd signed up for hospice just weeks earlier and all expected me to die soon. Actually, that's been expected for over 20 years.
When you first meet me and find out I'm dying, MBC can seem so...fatal? terminal? terrifying? all of the above?
But, put it in perspective - 25 years ago, a 14 cm chain of lumps showed up in my left breast. I soon had mastectomies and have been on a wild ride or series of adventures and misadventure ever since. I've learned and grown in many unexpected ways and can only feel grateful and intrigued by how it's gone. Okay, interested in how I'm going to get gone.
Southern Survivor, what a lot you've been through already! You've achieved successful treatment results several times and are facing yet another challenge now. You are truly a survivor and have dealt with each challenge as it has arisen.It seems you will continue to bring your grace and resolve into what's next, even as you wait for your situation to clarify.
Recently, I had advice for Rosevalley - tumor markers tell only part of the story. How you feel is so important at our stage of the MBC experience. My adage is, if it ain't broke, don't try to fix it. Keep an eye on the markers, but pay attention to bigger markers too - how do you feel? How's nausea? Vomiting? Ability to eat? Abdominal discomfort? Any other troubling symptoms?
It's said by many oncologists that all treatments for advanced cancers like ours is palliative - less emphasis on curing the cancer and more on treating the symptoms and reducing unwanted treatment effects. It's hard to make the transition from the short term sprint of aggressive treatment for earlier stage disease to the marathon of appropriate treatment for later stage disease.
Of course, all treatment options should be discussed with your health care team, reviewed by you and additional opinions sought when you don't agree with the earlier options.
Sorry to be so wordy - I'm up early with nausea and writing in a straight line keeps me from the jumps and bumps of sea sick feeling.
Very best to all my belly buddies this morning! ~ Stephanie
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Thank you, Dianarose and Stephanie, for your words of compassion and helpful hints. Very much appreciated. So good to have you women to "talk" to, as it seems so few of us have mets to the stomach. This is such a hard place to have recurrence (although I know NO recurrence is easy), but it is hard to tell what is chemo side effects vs. active cancer in the digestive system.
Dianarose, "peeing razor blades" - how awful! So glad the pain & blood stopped but scary for sure. Do not know if cannnabis oil is helpful unfortunately. I haven't had the stomach contracting feeling either.
Stephanie, you are right about palliative care vs. cure. This is a marathon. My onc says I'm a walking miracle, as I know they thought I would have been gone by 2015. My tumor markers though have always been an accurate indicator- when they rise something is definitely going on. So, after being first diagnosed 9 years ago, I know to rely on them, which has been a helpful guide for my oncologist to do some further looking into. Right now I'm feeling pretty well - have occasional nausea/vomiting and diarrhea from Xeloda. Also, have bad HFS too but I'm managing. Just trying to combat with those pesky, unwanted cancer cells before they get too out of control. My QOL is so much better after my surgery. I can't imagine going on a feeding tube again - was absolutely miserable. I was more naive back then and never imagined having that tube for 9 months.
Much love to you all,
Sheri (Southernsurvivor)
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s.Survivor- how long have you had mets to the peritoneal? If you don't mind me asking, how old are you? I am 55 but started this journey at 43.
So as the morning progressed my crotch felt like it was on fire (sorry too much info) so I bought a yeast infection test kit. Turned positive in seconds. Just never end
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Dianarose,
After first being diagnosed with ILC breast cancer a few weeks before I turned 43, I was officially diagnosed with stomach mets by Mayo Clinic when I was almost 50 (although it had been there for at least 5 months - I'm thinking Jan 2014.) I have two sons - one a junior in college and one a junior in high school. I so want to be here to see them become independent!
Sorry about having a yeast infection - I know that is miserable! Yes, one thing always seems to lead to another on this crappy journey we are all on...
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Hey Hummingbird! Yes I am doing pretty fine, I just was without Internet for almost a week (TORTURE LOL!) Between work and trying to sell our house I've been kind of overwhelmed too. Wish we would sell, but it is late in the season now, so doesn't look likely. I really want to downsize and simplify very much, just so that eventually when my health continues to decline, our life is much more managable for DH and me.
Dianarose, My husband and how wonderful he is, is probably the hardest thing for me. We are coming up on our 30th anniversary and I know how much he depends on me, for company, understanding, appeciating his humor, support ect. It just eats at me to think of leaving him alone. Which is what pushes me everyday to live all can now. Easier said than done, but I'm working hard on that. Best wishes on the surgery and hope that improves your QOL dramatically. Hope the infection clears up FAST!
Southern, Sounds like you have had some pretty intense complications yourself. The things you ladies go through and come out the other side astound and inspire me to remain strong and hopeful every day.
Stephanie, to me nausea is the worst. Hope you are felling better this morning...
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