peritoneal carcinomatosis
Comments
-
- Do you ladies live where you can get cannabis oi legally? I get it without the thc. I just started it. Supposed to help with the nausea and stop the cancer from growing? The cinnamon flavor I could do wi
0 -
HI ladies, I am 55 and originally joined this site in 2003. After chemo and rads everything was ok, until April. IN April I started throwing up, first once in a while and then often accompanied by a feeling/pain like I was punched in the stomach. I was slowly losing weight (Due to the vomiting we thought) went to Doc had gastric emptying test, abdominal and pelvic ultrasound, upper GI and colonoscopy. I also had had a unremarkable mammogram in May. All tests showed negative findings except a few stones in my gallbladder. In July I started vomiting and would not stop. Admitted to hospital for hydration. This went on for 6 days, they finally did CT scan which showed signs on the omentum concerning for peritoneal carcinomatosis. Had surgery this past Thursday, hysterectomy and gall bladder removal. Gall bladder had mass on it that didn't show on ultrasound or scan. It was mushy and hard to temove. Waiting on final path report but prelim showed recurrent breast cancer. I had IDC. I can not find anywhere that someone didn't have lobular that metatstisized. After almost 15 years I am blown away and terrified. Looking for some support and education.
Thanks,
Stacy
0 -
Harleyhoney- Staci- Lobular is the more likely to mets to the peritoneum, but I don't see why IDC couldn't too. If you are ER+PR+ and have only been on femera then you have a long list of options to try. Now that you have mets there is an even bigger list of meds. Don't throw in the towel wait and get on something to kick the cancer back. Then you will start feeling better. I wish I could tell you this is an easy road but it isn't. Do you have ascites as well? Hugs your way. I hope you are feeling better after your surgery.
Dinarose- sorry about the infection and bladder issues. Hope you are feeling better. Hey I use CBD oil made from pot, no THC and it really helps with nausea. I have mint and citrus flavored oil that I put 7-8 drops under the tongue. It works.
0 -
Hi Everyone. Crawling out of bed long enough to tell you that the 2nd treatment of Halaven hit me like a ton of bricks! I'm so tired. I do the thing where I get in the shower, get light-headed, and have to crawl in bed for awhile. Slept 11 hrs last night and just woke up from a nap. Welcome to all the new people.. So glad you are here but breaks my heart that you have to be. LOVE and HUGS, Cathy
0 -
- harleyhoney- wow! Sorry this is happening to you 😓 I am new to this thread as well. I didn't vomit so they pumped my stomach for over two day. Maybe there is some dam lobular that isn't showing up. In 2004 I had dcis but round two was lobular that didn't show up on any scans. Was only found under the microscope. I'm 55 too and not ready to quit yet. I love my life.
- Rosevalley- I just read that with the oil you need to get up to I think it was a gram to help control the cancer.
- Rotrcath- I hope you feel better soon
0 -
Too darned tired to write right now...just wanted to drop in and say hi & send loving kindness for all!
Harley, Stacy, I'm an ductal gal too. Sorry you have to join this small, select and supportive crowd, but you couldn't end up in better company and such a wide variety of experience to share.
Ugh!Do ask us about tips and keep sharing yours. I'm in N. California and have been treated at UCSF, but am on home hospice now, so playing a very different survival game now - as much joy as possible and little suffering for possible long term benefit. Hard to switch strategies after all these years. But life is so much mellower for me.
Much love all, Stephanie
0 -
Southern and Harley, I want to welcome you both to our group but I am SO sorry to read what you have been through! Just awful! I know you can get some info here and support; you have come to a good place. This is a scary situation we are in and it helps to be able to share what works for us.
Diana, you asked about the gas and bloating. I take 2 Ultra strength Gas-X pills when it's bad and usually I get some relief, not total relief, but at least something. Sorry to hear what you had going on today! Hope you are feeling better now. Also - I am hearing too about cannabis oil that, as you mentioned, may help with slowing the cancer itself. Don't know though if there is anything proven yet about that.
Artist, so glad to hear you are feeling well. You are one busy lady with working and having your house up for sale! I hope you get a buyer soon so that you can feel less stressed. We also would love to downsize, but just the thought of going through all of that right now stops us. Also, we have a senior 140 lb. rottweiler and don't think is a good idea to make a move. You are very smart to do that now, and I hope you have many years to eventually enjoy your new home! Good Luck with the sale!
Cathy, I get scared to hear you are feeling extremely fatigued with Halaven. That chemo was already mentioned to me as a possible treatment for me. I hope you feel a lot better by tomorrow. Sending hugs.
Stephanie, Rosevalley, everyone reading - I hope you are comfortable.
0 -
Hummingbird-one of the nurses I had the other day said her uncle had stage IV prostate cancer and after nine months on cannabis oil he is cancer free. Not saying it's a cure but my doctor said it can't hurt. You would need to google dosage for cancer
0 -
Hummingbird, don't worry about Halaven. I am a constant problem for my Doc because I'm such a lightweight when it comes to medications. I'm sure I will feel better soon. Love you guys, Cathy
0 -
WOW. Interested to see what the final path report shows with IDC vs Lobular.. Dianna I use cannabis oil and am researching the Rick Simpson protocol. I will let you know as I learn more about it. My boss's daughter is a big advocate in Colorado and I have been speaking with her. The cannabis club I go to here in the Bay Area has a naturopath for free, I intend to make an appointment with her as well. See my oncologist beginning of next week and see what he will be suggesting after seeing the final path report. Rose, I am terrified but no intention of throwing in the towel
Thank you ladies for being so welcoming. It's been years since I've been on this sight. I spent probably, literally 100s of hours on here when I was Dx in 2003. The friendships I made were /are priceless.
Everyone have a great rest of your night.
Stacy
0 -
Hi ladies and hello from Sydney, Australia 😊
I was diagnosed with Stage IV breast cancer last week after mets were found in my Omentum and bones. I had been feeling a bit nauseous, getting full after eating only a small meal and sometimes throwing up after eating. So my oncologist sent me for a CT scan which led to a biopsy and here we are.
My oncologist said surgery is not an option and we should keep chemo in reserve, so I have started on Exemestane and Afinitor and will have an Xgeva injection once a month. I'm trying to get my head around starting with hormone therapy as I always thought it just stops new cancer cells. What about the cancer that is there now? This cautious approach is both scary and worrying!!
My journey began in 2009 with ILC in the left breast with 13/27 lymph nodes involved. I had a mastectomy, chemo and radiation. This seemed like a good course of action, which is why I'm having trouble understanding the current treatment plan.
I was really pleased to find this thread as so many of you strong and inspiring women have had or are having journeys similar to mine. I hope I can lean on you for advice and support in the days to come. There doesn't seem to be too many women with mets to the Omentum /peritoneum and everything I have read gives a poor prognosis and is rather bleak, which is sad.
Sending you all hugs and hoping you are having good days
Judy xxxxx
0 -
Mag- you can get a second opinion on treatment. If you are already having eating issues it might be a good idea. Sorry you have joined us😓.
0 -
Hi Judy,
Welcome to our little belly mets group!
Yeah, it's so hard to switch treatment strategies from short-term, aggressive, potentially curative treatment for earlier stage disease to a longer-term, milder, palliative plan for MBC (metastatic breast cancer)! Surely a higher stage deserves even more aggressive approach. Right?
Yet, oncologists ask MBC folks to accept a less aggressive approach, unless we have a very few, local lesions that can be locally and/or aggressively treated (called oligometastatic disease). It's thought that once the disease has spread, it will be with us for life and we're likely to remain in treatment for the duration.
So, the plan is to wear out the cancer without wearing out our ability to tolerate treatments.
Until a few years ago, exemestane/aromasin with everolimus/afinitor was the preferred standard of care for newly diagnosed ER+/HER2- MBC. Since then palbociclib/ibrance with letrazole/femara or fulvestrant/faslodex is used more often as the unwanted effects are less onerous for most patients.
Sorry to throw so many polysyllabic words at you, but I don't know what these drugs are called in Australia.
You may want to click on the underlined links to find other bco communities whose members are working with these regimens.
Meanwhile, please stick with us. We are a friendly and widely experienced bunch with many tricks up our sleeves for living as long and well as possible with our shared diagnosis!
Much love & welcome, Stephanie
0 -
Good morning from California, everyone!
I'm fading out again and heading back to sleep. Just wanted to check in and say hello.
Hummingbird, I have it in mind to look up your trial of AZD5363 in the wider research world, as there are only a handful of posts and no personal reports at bco.
Hummingbird, it's on my list and I hope I can find something encouraging or enlightening for you.
Thank you so much for being willing to participate in clinical trials and forge the way for the next generations of MBC folks. I hope it's successful for you and those who follow!
Healing regards all, Stephanie
0 -
Retrocath- sorry chemo kicked your butt... lets hope it does it to the cancer. Hopefully it is a short term reaction and after a few days you will feel better. I go in on Wed. and they up my dose as well. I think it's working as there is a slight reduction in ascites and I can still eat.
Welcome Magpiemumma in Australia. I am sorry you had to join us but we have a hearty bunch of souls here in the belly bunch and we try our best to support and share our knowledge with one another. Please jump in and ask for help or information as I am sure someone knows something. Hugs and fortitude your way!
0 -
Stephanie, where in California are you??
Stacy
0 -
Good morning. I think I am feeling better. I seem to be getting joint pain with this chemo but that definitely feels better. I get so hungry but immediately get reflux these days--apparently no extra room in the gastrointestinal system. I received a higher dose of chemo this time so I think it's the combo of cumulative effect and more drug. Rosevalley, so glad your ascites is a little better. Good luck with your treatment this week--it's my week off!! YEAH! Hello Magpiemumma! I am always so amazed when someone has their mets show up on a scan. My peritoneal carcinomatosis has yet to appear in anything they can test for except ascites. Good luck with the Afinitor. If you get really painful bloating let your Dr. know right away. I'm so glad to see all the posts from new people. Sorry this has become your reality but "we are stronger together." Have a really good day everyone! Love and Hugs, Cathy
0 -
Hi. I've only posted on this site a couple of times. Initial diag was ILC stage 2 in 1998. Had bil mastectomies and chemo. No problems until diag with mets January 2016. Lungs, bones and abdominal cavity. I'm on Femara/ibrance/xgeva. So far the mets in my abdomen has shrunk considerably. Less symptoms of bloating and I've even gained back about 10# I had lost before diagnosis--not very happy about that. The stuff in my bones and lungs is unchanged. It does bother my that it's not decreasing. My tumor markers have come down consistently also. When I first saw the oncologist I was determined this cancer needed to be blasted with big guns chemo like the first time. But I am coming around to understanding that my treatment is palliative and the goal is not to cure. My doctor told me we were running a foot race, not a sprint. She also told my this cancer has most likely been in my since the initial diagnosis. It just took this long to be discovered. So sometimes I get stuck thinking that I've had mets for close to 18 years--have I already used up all my time? It was just a year ago that I first started having symptoms of slow weight loss and not being able to eat much without feeling like vomiting. I've never really had any bone or abominal pain or breathing problems. I don't really feel sick at all, so it's really hard to wrap my head around all of this. It is helpful to read about others going thru similar things. Most people look at me like I'm crazy when I tell them I have breast cancer in my abdomen.
0 -
Dear Firstmate 52, Nope, you haven't used up all your time. You now can beat back the cancer and buy yourself more time. There are times it won't be much fun but you can do this. We are here for you! When I tell people that I have stage IV breast cancer they almost always say, "But you look so good..." I sometimes felt guilty only having the cancer in my bones or whatever....Now it would be nice to go back. We take it as it comes. Enjoy those times that you feel good. I've even taken a few trips in the last few years...I call it making memories with my family. I truly believe you set the tone of how other people react. I have to put on my brave face for my husband and youngest daughter in particular...that in turn makes me stronger. Believe me, I have times when I feel a little pissed off but at the same time grateful that I have had so much time to adjust and prepare. I was 1st diagnosed in 2002 and stage IV in 2012. Sorry I'm rambling, I think. I appear to be revisiting "Chemo Brain!" LOL Take care of yourself and do something that makes you happy!! Cathy
0 -
Good morning everyone, thanks for your replies and words of welcome. It's really good to feel part of this supportive club where people know what you're going through.
Stephanie thanks for the advice on the different drug regime. I will ask my Dr about this when I see her next. Thanks also for putting into perspective the difference in approaches to our treatment versus initial diagnosis.
Thanks Rosevalley for the welcome. Cathy it's good to hear you are feeling better. My mets showed up as 'stranding' on the Omentum. I think it must have shown up in the bones too as the radiologist said if the fine needle biopsy didn't work they would do a bone biopsy - it was the first I had heard anyone mention bone involvement.
Have a good day all
Cheers Judy xxxx
0 -
Oh my - it's amazing (and crappy too) that there are actually more of us out there with stomach mets. My onc has never seen a case like mine in the thousands of breast cancer patients he has seen.
Judy, my PET scan also showed "soft tissue stranding of the omentum and mesentery."
Rosevalley and Stephanie, where are your ascites? Both my PET scan and CT scan showed a low level of ascites in the pelvis. I'm very worried about that. Rosevalley, so great that you can still eat, as we both definitely know how miserable it is when you can't. Pray that it continues.
Sending healing thoughts to all of you. This is such a hard way to live and I'm so grateful this thread is here for us to share information and give encouragement to each other. Hang in there, all.
Much love,
Sheri
0 -
The clinic called to let me know the culture from the urine with the tube was positive. Urologist wanted to put me on Bactrim which bothers my stomach. David to take it with a lot of food. Really, on a liquid diet! Nurse put me on hold and when she came back she said unless I get a fever or bad pain they are not going to treat it right now.
Hubby and I stopped at a restaurant for lunch. They had turkey soup so I ordered a cup. It was pure turkey grease so didn't eat. Any tips on how to survive on a full liquid diet and are there things I might be missing that I could possibly have. I have never been a big eater but I never thought my cause of death might be starvation 😥. Also for those who were on this diet were mornings the worst. I am assuming it's because of having nothing in my stomach for so long. Takes me until noon time to get some jello in me.0 -
Magpiemumma and Firstmate, just want to welcome you here to our group - and here we are again with sneaky ILC as I see you both have!
There has been a lot of activity lately on this thread and I am so glad that you all feel comfortable enough to join in, as sharing each experience and treatment plan will help all of us. Some of us have already been through quite a few treatments and others are deciding between some of the early ones offered such as Ibrance/Femara and Afinitor/Aromasin. My experience with the two combos is that for me, the Ibrance combo was much easier than the Afinitor combo. Way less SE with Ibrance/Femara. And I was on the highest doses of both combos for the entire time. And although many ladies do well on Xeloda, except for HFS, I was not able to take Xeloda - almost went to the ER, couldn't process that one! It's true that we are all different with how we respond to each drug, but it's good that we can come here and talk about it. Good luck to those who are in between and making decisions. It's really difficult!!
Diana, I may have missed you telling us in your earlier post, but are you still on just a single anti-hormonal? You are having so many bad symptoms. I feel so sad that you have all that going on. When I was at my worst point back in January and February, and I was so horribly sick - my onc kept saying that I had to hope that Taxol would knock back the cancer in order for me to feel better. It took about 5 weeks, but then it began to work. I'm not a doctor, and please - I'm just worried about you - and I'm wondering if you need to move on to something a lot stronger?
Stephanie, thank you again for you kind words and interest in the study I am in.
Yes, this is my third clinical trial. After this one, my onc said I may not be accepted into any others due to too much progression. So it will be back to IV chemo for me at that point. But for now, I'm feeling much better and I'm truly enjoying this! I will be scanned on Thursday - keeping my fingers crossed for good results! I'm concerned that even though I feel better as far as the belly symptoms, maybe all the liver mets I have aren't being reduced? I tend to worry more about the belly mets because of symptoms, but its my liver mets that concern the oncs more!
Always thinking of all of you. Best wishes.
0 -
Dear Dianarose, I love Atkins shakes (especially in the morning). I put them over ice. Not only do they taste better this way, they feel very soothing going down. I love to get Chinese soup (eggflower). I can eat on it for a couple of days. I also love Progresso light chowder. I add lots of extra half and half and butter to thin it out (a little pepper to taste). I just don't eat the potatoes or you could probably blend it all up. Good luck with your diet. I was luckier in that I could eat soft foods, i.e., cottage cheese, mac and cheese, etc. Love and Hugs, Cathy
0 -
Dianarose- I love clear boost. The stuff is great goes down easy and stays down for the most part. Peach and Blueberry are my favorites. Your oncologist in the infusion room should have some coupons to make it cheaper for you. I also ate cream of chicken soup strain out the chicken, milk and bites of vanilla ice cream. Jello too. There are some additives that add calories and will make you feel full like-benecalorie unflavored food enhancer 330 calories and 8 gms protein to mix in jello or soups, cream of wheat etc. It's hard living on 800 calories of nearly nothing. I did it Dec, Jan and Feb. Liquid diet for months and I threw up 50% of everything anyway. Whey protein powder from Trader Joes mixes with milk to make a high protein shake cheaper then ensure. Buy strawberry syrup and make it flavored. Atkin protein shakes are pretty good. All the shakes are best icy cold. Sometimes they are on sale. Full liquid for months is hard. Sorry you are starving. Greasy soups would make me green I wouldn't eat that either. Hugs I feel for you!!!
0 -
Hummingbird-they want me to get through surgery and have whatever is growing biopsied before they put me on anything else. I was on Aromasin but have been on Letrozol for two weeks.
My biggest problem with this diet is I don't like sweets😖. I was a pastry chef and I've to make it but never ate it. I have made some very watery scrambled eggs with a ton of milk then add a ton of warm milk and butter. I never drank milk and am discovering it causes constipation😖
I want to find a new oncologist and am hopping to get some referrals this week.
Hope everyone sleeps well
0 -
Hi Diana Rose and others facing digestive distress,
Consider using milk with lactic acid or taking lactase enzymes, if you can still swallow pills.
Most mammal species but humans, stop drinking milk after youth and many Asians and others whose diets don't include milk products become lactose-intolerant and end up with everything from flatulence and bloating to diarrhea and/or constipation. Adding it back to your diet can have the same effects.
btw, I am into CAM/integrative and holistic approaches to everything and will often offer ideas...not medical advice and not to substitute for medical care. It's just that we can take care of so many annoying symptoms and unwanted treatment effects without adding more drugs to our lives! Please take what you like and leave the rest!
Also, at least in my region of the San Francisco Bay Area, there is Orgain and a wide variety of healthy, organic, additive-free calorie substitute drinks that are more agreeable than Ensure or Boost, if you wouldn't eat those ingredients. Many are available online. They can be as expensive as food, but still a whole lot cheaper and easier than hospitalization, TPN, gastric feeding tubes and other aggressive medical approaches.
I live for naturally fermented pro-biotic drinks (not kombocha for the sugar and caffeine content) and also sauerkraut juice that really help me control the nausea associated with ascites, the free fluid that builds up in my abdomen daily (1 liter drained daily since mid-August 2015).
Sweet flavors don't appeal, but sour ones do, so I often add a squirt of lemon juice to food and drink, including savory foods and sweets - so grateful a lemon tree is outside my window!
Healing regards all, Stephanie
PS, Stacy, I'm about 90 minutes north of SF in rural Sonoma County. My grandparents lived in Oakland when I was growing up and I wasn't driving then, so I seldom made it east of there on 580. Warm hug from your California hippie friend!
0 -
I would love to find a hard candy that is salty😘
Longtermsuvivor- have you tried cannabis oil
0 -
Diana, sorry - I understand now. Of course it makes sense to wait till after the surgery.
0 -
Are you ladies under the care of a gastroenterologist as well
0
