peritoneal carcinomatosis
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I googled " is peritoneal nodularity cancer or damage from cancer" and found a website called HIPEC. It not only states that nodularity is cancerous but it also shows a picture. I then got a call this morning from the clinical trials office. It looks like they are using the nodularity to get me into the clinical trial. I go in today for a baseline blood test and I think start next week. It sounds like this clinical trial has similarities to the one making the news this week. I wake up every morning with my gut feeling like it can go either way. Episode today. HUGS, Cathy
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Cathy- what is the name of the trial and how does one qualify
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Hi Dianarose, go to www.clinicaltrials.gov and look for WRI-GEV-007 WIRB Protocol #20161450 or SV-BR-1-GM. I think that will get you the info you need. Sounds like this particular study is only in about 4 places in the country. Everett WA is one. You have to be stage IV with cancer that shows up on scans for them to follow. You have to be stage IV breast cancer that has spread and at a point where surgery, radiation or other medical therapies will not cure you. That sounds like us! I hope you are doing ok. I know you are not feeling very well. I think of you often! Gentle hugs, Cathy
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Cathy- I couldn’t find it. Will ask MO next week. I sure fit the bill though. I was just reading about the woman that had the T cells put back in her. She’s been cancer free for two years. Two of her friends did the same treatment and died. Very scary
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Hey Dianarose, I told you wrong. It's www.clinicaltrials.gov Metastatic breast cancer SV-BR-1-GM Don't put in a location and all the locations will show up. Sorry, permanent chemo brain! HUGS, Cathy
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Cathy- the closest one is in Pennsylvania which is ok because we have family there
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Cathy, can you tell us why this particular trial stood out for you to try (I remember a woman suggesting this one to you) and what your MO said about it? I really know nothing about clinical trials and I'm trying to gain an understanding as to when is the “right" or good time to go in a trial vs. a different FDA approved chemo. I know my chemo options are dwindling, so was hoping you could provide some insight as to your and your MO's thoughts. Tomorrow I have an appointment with my nurse practitioner, who is really good, and I will ask her too.
Thanks - I have so much to learn and y'all share such good info.
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Dianarose, hope you can work it out! This trial feels very important. The idea behind it is amazing. Cathy
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Hey Sheri, The girl in clinical trials has been looking out for a clinical trial that I would qualify for. So many of them have so many restrictions...no previous chemo or whatever. This one is specifically for women with metastatic breast cancer that have been on numerous other treatments that in the end failed. Sounds like most of us here. The Foundation One Study said that Afinitor should work for me and that's what I've been on since last October. My Doc was about to raise me to the highest dose. Each dosage change has only bought me a few months. It felt to me like it was starting not to work. Also, the side effects were getting worse for me. I think he wanted me to take it as long as I could but I didn't want to miss out on this clinical trial by waiting too long to get on it. I am to the point now where I wake up every morning with my gut deciding whether it's going to act up or ease off. I can tell it's getting worse. I am also gaining weight again. I have been eating a bit more but not enough to justify 6 lbs in 4 weeks. I might be building some ascites again. The experimental therapy is called SV-BR-1-GM. It's created with a human breast cancer cell line that has been genetically engineered to produce a substance called GM-CSF which occurs naturally in the body. It stimulates production of white blood cells by your bone marrow. The cancer cell line has been treated with an x-ray type treatment so that they do not spread or grow. They want to see if it might develop killer T-cells or antibodies to fight cancer. Anyway, the bottom line is to have your body recognize cancer cells and have your immune system fight them. It is given over a period of time with Cytoxan and Interferon. You might go to the website I gave Dianarose and see if you get better information. My Doc will still be my Doc. I wanted to do this too because I'm running out of chemotherapies that my body can handle. I react to so much stuff. My Doc thinks I might lack an enzyme in my liver that processes the chemo. So there are many things I can't take. And I want to make a difference. If this helps those of us with g.i. spread that would be a miracle in itself. I guess I could technically go back on Afinitor if this doesn't work for me. Just found out late this afternoon they are making sure nodules are big enough to follow...it's been a total crapshoot!! Anyway, I think my Doc would have been more excited about me doing it if he wasn't so convinced Afinitor was working. He never actively told me not to do the clinical trial. It's more like he didn't want to sway me one way or the other. Also, you have the right to stop any time you want. Sorry this isn't more cohesive. Think I'm tired!! Good night!! Hugs, Cathy
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Thanks so much, Cathy, for the explanation. All of the cancer stuff (various treatments and progression) seem like a total crap shoot to me! Many people seem to think with Stage IV you should start with hormonals, AIs and targeted therapy first, and save chemo until later. Well, after a few months on Faslodex after being diagnosed with Stage IV, I was so sick that the big gun chemos were taken to keep me alive. Now, I've gone through several chemos and it's time to start thinking about trials. Nothing is easy about this. You are exactly right that the clinical trials seem to want women who have not been heavily treated for their cancer. Ugh.
Goodnight all 😴
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hello ladies, There is a test that tells you if chemo works or if it doesn’t or what chemo works and what doesn’t. Do you know what it’s called.
Also are there any cancer treatemetments that are natural?
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Cathy- as long as Xeloda is still working I think my mo will want me to stay on it as long as possible. The fatigue is bad. I slept for 12 hours and still tired.
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Cathy- is this trial an infusion or pill form
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Dianarose, infusion. Get some rest! Love, Cathy
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Cathy- I slept for 12 hours. Tired of resting lol.
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Dear Johnny, I went back and reread what you originally told us about your Mom. She shouldn't be afraid of trying Ibrance and Letrozole. They bought me 15 months before I had to switch to another medication. They are not chemo and are in pill form. I don't know what those tests are called....run it by your Mom's Doc. If your Mom has peritoneal involvement, shakes and drinks with lots of vitamins might be good for her. With peritoneal involvement we have all learned the hard way not to get constipated, not to eat foods that are hard to digest. That sort of thing. Your Mom should try to go easy on her gastrointestinal system. Good luck, honey!! Cathy
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thank you Cathy, I will explain it to mother and hopefully it encourages her and and gives her hope. Today I made her a strawberry and blueberry smoothie And she puked it out. I have also noticed her skin getting real loose. Just seems like she is loosing her muscles. Anyways tomorrow we see the oncologist. Any idea what type of questions to ask
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They said it's definitely cancer based on a tumour marker. They just don't know what type. That's where the pathology report will come in. He said there is not enough fluid in the stomach area that's why they will be focusing on the chest lymph-nodes biopsy. He said breast cancer patience usually gain weight not lose, so he is confused. He also said they are trying to figure out weather there is HER2 positive. I made a point where it was er and pr positive HER2 negative. He said we are trying to figure out if it mutated to HER2 positive. I had to pull teeth to ask him questions, why can't they show that they care? No compassion. The oncologist said without proper pathology report he can’t say for sure for survival, based on his experience, he is not concerned for the first several months but after that when we start approaching a year then yes he is concerned. It’s kind of unrealistic I honestly don’t want to lose my mom. She means the world to me. He talked again about the drugs mentioned but he also mention another drug that works well. Which I have no clue how if he doesn’t know the pathology report yet?
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Johnny, I gained weight during treatment for breast cancer but not from breast cancer. I don't know what your Doc means by that statement. Anyway, if it's in the gastrointestinal system, your Mom would more likely lose weight. Hope you get the info you need soon. Keep us posted., Hugs, Cathy
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Good morning....Test results are finally coming in. I have more peritoneal spread but that's not what they are going to watch for the clinical trial. Turns out I have some active bone mets again also. Those will be easier to measure and keep track of. They are also going to watch a growing amount of ascites fluid. I have gained a few pounds lately so I'm not surprised. My abdominal area is sore again to the point it hurts to drive over bumps when riding in the car. I also have multifocal nodular ground glass opacities in the lower lobes of my lungs which has not shown up before. Test says could be cancer or infection or side effect of drug toxicity. I guess Afinitor can cause some lung issues. I see the Doc early Wednesday morning so I can then start the trial at 10 that morning. Hope everyone has a great weekend. I have lots to think about! Hugs, Cathy
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retrocath: could you please post links to the lobular keytruda trials, present/future and past (the ones in england)?--this is the first i have heard about that. is it TNBC or HER+ lobular? i shall google it also but maybe you can speed up that process for me. thanks!
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Well they are trying to figure out if it's breast cancer that has metastasized or if it's a new cancer such as peritoneal. Or it if it has spread to the liver, etc. Doctor said that women with breast cancer gain weight that's why he is confused as to why my mom is losing weight, maybe it's more aimed at it might be another cancer.
They do see something in the peritonium but nothing is certain until we hear the pathology report. I asked him about survival and the oncologist gave a different response compared to another doctor that is working along side the oncologist. He said first he needs to see the pathology report. Once that's done he can estimate. He said they are terrible at predicting how much time someone has. Then he is said "based on my experience I'm not concerned about several months but after that yes I'll be concerned. Like thanks...... not only are they trying to squirm their way out of every question I have but they also being a baby about giving an idea. They don't want to be responsible, but the one thing I hate the most is why do they keep on pushing my moms test further away are they trying to cause more damage. Like isn't it the longer we wait without treating the more the worse things get. Shouldn't they be on this like a duck on a June bug?
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retrocath: could you please post links to the lobular keytruda trials, present/future and past (the ones in england)?--this is the first i have heard about that. i shall google it also but maybe you can speed up that process for me. thanks!
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Hey Luce. I don't actually have any more information either. I'm sure you can get the same info I could by googling it. Also www.clinicaltrials.gov might have something. I would search breast cancer and keytruda. Good luck! Cathy
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From what I was explained you have to have a certain gene mutation for Keytruda to work. They tested a biopsy sample of mine and the report came back that Keytruda would not work for my cancer. I was bummed out.
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Hey Dianarose, you're right! I had Foundation One Testing and Keytruda was never mentioned. Hugs, Cathy
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Hi Johnny,
I'm also confused about your mom's doc's statement regarding breast cancer patients gaining weight. My recurrence started as pleural mets and I lost almost 20 pounds over a short period. The issue in my case was that my lung was full of fluid so my body was working very hard to breath. Cancer patients often lose muscle mass. I also lost weighduring my original chemo. Now, I have gained back a few pounds but nothing significant.
He may be referring to ascites which will cause weight gain due to the build up of fluid.
Pat
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Cathy, my hubby was dx once with ground glass and pulmonologist took it very seriously. Antibiotics was the way to go. Crossing fingers and toes for you to get great results with the clinical trial.
Johnny sorry but either you did not quite understand what doc said, or he is ignorant. No such a thing as Breast Cancer women gain weight. Based on what is he saying that? Maybe is someone has to take steroids for some reason, or ascites...otherwise it just does not make sense. You could go for a 2nd opinion, so you will be more in peace with whatever they think they are looking at and treatment. It's done all the time.
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Doctor said unless he can see pathology report he can’t say. But he said he won’t be concerned for the first several months but will be after. What do several months mean? What’s this bozo talking about? There was no mention of peritoneal up until now.chest ct clean so I don’t get it ?
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wow, AC is a powerful chemo! For 7 1/2 years, I never had to use any anti-nausea drugs (other than pre meds given at infusion) and rarely missed any work. The first two days after infusion, I think because the pre meds and steroid, l felt normal. But after steroid disappeared I basically crashed. 3 to 6 days, I had terrible GI tract problems, gave in to anti nausea reliefs, and so tired I could only hold my head up half a day in the office. Slept almost 10 to 11 hours a day until today the 7th day. Finally get some energy and appetite back. If this is the normal every 3 week cycle, I am ready to face it, because AC has a life time limit of 6. The dull aching on my back for several months seems to get some relief. Hope this chemo really arrest the belly mets for a while.
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