peritoneal carcinomatosis
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Milwmama, just a heads up. My peritoneal mets doesn't show up on scans so if they tell you it's nothing , but you still have symptoms, keep pushing for other testing. Good luck with your scan!! HUGS, Cathy
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Hi Milwmama - good luck on the PET scan today.
Cathy - what testing do you do that shows your peritoneal mets? I do a CT scan with contrast dye, and it does show my mets. I have done a PET scan before too, but insurance doesn’t like paying for those often. Also, I like doing the same test to compare the results from the previous one.
Hope everyone has a good day. I’m starting Halaven cycle #13 today
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Hi All,
Just weighing in on the discussion of scans. My mets have been very tricky to monitor as well. The bone mets show up, although bone scans are useless for me... the reports always come back indicating that "a bone scan significantly underestimates the burden of disease in this individual". I think the issue is that my cancer is slow growing so uptake of the tracer is minimal. Also, I have sclerotic mets which make it difficult to distinguish between healing and new mets on a CT.
Beyond the bones, I have mets in my pleural lining and likely my peritoneum. Clearly the pleura is involved as my original diagnosis as stage four came about after I experienced a right pleural effusion. The pleural mets then continued to spread, extending down into my abdomen. The only way to see this on the CT scan is by measuring the thickening of the pleura. The belly mets showed up as thickening and scalloping that they referred to as "suspicious for capsular disease" as it is surrounding the liver.
My MO has never ordered a PET scan which might give more information. His reasoning, which I agree with at the moment, is that it will not change our treatment plan and it is a bit challenging to arrange. We don't have a PET scanner here on the island (yet... they recently had a fundraising drive to buy a PET scanner for our cancer agency here in Victoria) so I would need to go to Vancouver for a PET. I may ask that we revisit this decision down the road but for now I am comfortable that we have a pretty good handle on what's going on.
I hope this helps. Cheers. Pat
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Hi Sheri and all! Honestly the only time they could prove mets were the floating strands of cancer cells that showed up in ascites. After an endoscopy the radiologist said "suspicion of peritoneal carcinomatosis." My Doc has to go by my symptoms. He says I know my body best and know when something is different. He is right!! LOL At least now, since I had an episode when I was with him, he has 1st hand knowledge of what is happening. I'm pretty sure some time In past CT scans they have memtioned some apparent thickening in the abdominal area but not definitive. I'm with you Pat on the bone scans. I always had similar outcomes. The 1st scan I had showed mets in bones from breastbones, throughout ribs, sternum, pelvis and hip joints. Thank goodness all that seems under control right now. Woke up sick today. My daughter was sick over the weekend. I took meals to her door but made her stay away from me. Didn't help!! LOL Not as sick as she was. I really need to get that iron infusion tomorrow. I'm not sure the 1st one helped so hoping the 2nd one does the trick. Sheri, how are you feeling? You've been on Halaven for a long time. Can't believe Artist is gone. It's like this weight across my chest. We give each other such hope and validation. It's so hard to lose one of us. She was so kind and thoughtful. HUGS EVERYONE, Cathy
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By the way, 2 months before the ascites tested positive, a PET scan showed nothing! Cathy
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All, after today’s appointment, I’m not feeling that great. My TMs increased 24 points. They are still in the 200s, but this is the first time in 8 1/2 months that my TMs have increased. My PA says don’t panic yet, as we will run them again in 3 weeks after next cycle. One # is not significant as the look at trends. Still UGH. She said all my other bloodwork looked good. So, I just wait. Disappointed for sure. Otherwise, I feel quite decent and able to do quite a bit. Have fatigue but can work around that.
We did talk about a next step. May be Afinitor, although that is done with a hormonal and my body doesn’t seem to respond to hormonal drugs anymore, per the Guardant360 blood test. So that is a problem. I did mention both Doxil and Navelbine to her, as I have been on about everything else.
Cathy, praying that you feel much better tomorrow and are able to get that iron infusion. I swear we are a stubborn bunch, and we want our treatments no matter how we feel! That’s how much we want to live! I also think about Artist, as the last time she posted less than 2 weeks before she died, she was still fighting so hard. Such a warrior. I truly miss her.
Sadie - thanks for popping in and sharing in the scan discussion. I sure wish there was a clearer answer for us. Hate that we have to track down our sneaky cancer and sometimes take an educated guess as to exactly where it is.
Take care, ladies! Praying for each of you.
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Dearest Sheri, Don't panic til you have to and then it's onward and upward!! Yes, we are a stubborn bunch! Thank goodness! LOVE, Cathy
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Well, bad news ladies. My scan show 100% progression, so back to the beginning. Doc is going to put me on Keytruda. Thurosentisis tomorrow to send to Foundation One.
Colon is being affected which is my potty trouble. Not in any organs but swelling etc.
Super bummed. Really was hoping this was working since my last scan was so good. :,(
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Sorry, Milwmama, it is super frustrating and discouraging, especially when a treatment is working and then just changes in a dime. I know that feeling all too well. I don’t know anything about Keytruda - you will have to keep us updated. Glad you are doing testing for Foundation 1, as any additional info is helpful. My last scan did show thickening in the transverse colon, so we are keeping an eye out for that.
Take care - you are in my prayers today.
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Milwmama, so glad your Doc listened to you and ordered the scan and so glad your scan showed what is going on. That is a miracle in itself. I had the Foundation One testing as well. They only found one treatment they thought would make a big difference with me and that was Afinitor, which I'm on now. Hopefully your cancer isn't so cantankerous and will be open for many different kinds of treatments. It's amazing how fast cancer progression can change. I always attribute to what we are going through as a "never ending roller coaster ride." Sometimes we are on the easy downward slope and often we are on the topsy turvy portion feeling like we are out of control. Thank goodness for all the wonderful people on this site who are on the same ride with us. I'm sure we get strength from each other. I hope your next treatment gets you back to the easy part of the ride. HUGS, Cathy
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Just heard from doc, will also be on Halavan.
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Milwmama,
I can't offer any advice but wanted you to know how sorry I am that things are progressing. I have no experience with those treatments but hope they kick cancer's butt in your case.
Hugs. Pat
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Great, Milwmama! I’ll see you over on the Halaven thread. Halaven has really made my TMs drop and I’m hoping I can continue on it if possible. I’ll pray this treatment is successful for you.
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Hello Everyone! I had an amazing iron infusion today. A lady walked up to me while I was getting infused and told me she had never forgotten about me and had been for the last few years looking for clinical trials for me. She thinks she has found one. More than 3 years ago, my Doc talked about me doing a new clinical trial but you had to have the BRCA gene. I tested negative so couldn't do the trial. This was the lady I talked to that day I found out I didn't qualify. I honestly had forgotten all about her but she told me all this time she's been watching what my treatments have been and hoping to find something to help me. It's nice to be unforgettable!! LOL It's a treatment that they started out calling a vaccine. She said it's not really but you do get shots of the drug in your legs every other day for a couple of weeks and in between you get shots of interfeuron (spelling?). After that it's monthly. She said this treatment is for people who have used up all the treatments available to them. Since I'm technically already recycling treatments, she said I should qualify. She also said she would talk to my Doc about it. I'm so thrilled she's been thinking about me but I'm not ready to quit Afinitor. This time I'm handling it pretty well since we started out with a lower dose and worked up. It seems like the higher dose is working because I haven't had any episodes in more than a week now. I will try to find out more about this treatment an pass it on to you. Have you also heard that in England they are starting clinical trials on a lung cancer medication they think will also work on breast cancer? Lots of things coming down the pike. We need to hang in there. LOVE to all of you. Cathy
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Retro-Can you list what you have been on already to include the reruns? Its not in your msg signature.
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Hi Milwmama. I will try to list it all. Let's see how good my chemo brain memory is. LOL OK, I started with lumpectomy, 2 surgeries, 1 staph infection, Adriamycin, Cytoxan and radiation. I did 4 yrs of Tamoxifen and then about 8 months of Arimedex which was a nightmare of side effects for me. Year 9, diagnosed with spread to bones, stage IV. Zometa, Aromisin , Xeloda, Faslodex, Afinitor and then Abraxane. We moved and I had a doctor change She thought I was probably stage IV from the start in 2002 instead original IIA or B.. She took me off of Abraxane and put me on Tamoxifen. Off Zometa and tried Aredia. Spread to peritoneum with gastroparesis. Fired Doc because she wouldn't pursue the idea that my symptoms were cancer spread. Got current Doc who is now head of the cancer center I go to. Gemcitabane, Navelbine, Ibrance with Letrozole, Halaven, Navelbine, Ibrance with Faslodex, Xeloda, Afinitor and Letrozole and Xgeva. I failed on both Zometa and Aredia with severe body aches and pains. Doing fine on Xgeva. I also had shots during my first Navelbine treatment which caused severe back aches but I don't remember what it was called. There have been times when I was in so much body pain that I would sit in a chair and rock. I get through whatever current side effects and try to just put it behind me. Otherwise It's just too overwhelming.. Whatever family of drugs Gemcitabane is in seems to be toxic to me. Dr. said he thinks my liver is missing an enzyme that breaks it down. So whatever drugs are in this family he's afraid to try. I'm sure their are many people who have had it much worse than me. I am, however, patting myself on the back for not only going through this but also remembering the names of all these drugs. LOL Take care, Cathy Over 15 yrs. and still here!!
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Wow! Thanks for that! It's alot to remember.
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Does anyone else get symptoms of severe heartburn? Thank goodness Rolaids and Nexium actually help. Feeling a little "off" since last iron infusion. Hope it's short lived. Hope you all are having a great weekend! HUGS, Cathy
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I get acid reflux so bad it burns my throat and mouth.
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Sorry, Dianarose. That sounds miserable. What do you do for it? Hugs, Cathy
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I take omprezinol . Sure I spelled it wrong. Along with 5-6 tums a day. Stuff like a nice healthy salad makes it worse
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Ya, I've had to give up raw veggies. I miss salads! Rolaids works better for me. Don't know why. How are you doing? Been missing your posts. Love, Cathy
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Cathy, I’ve been ok. Just another double kidney infection 😖. Hubby is doing so much better since his prostate surgery from February. First few weeks were tough but he’s pretty much back to normal. I’ll have labs on Tuesday to make sure madam X is still working. I pray she works for years
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OMG! "Just another kidney infection?" So sorry Dianarose. Hope both you and your husband are on the road to recovery. HUGS, Cathy
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Funny....just went to my reg dr before my latest progression and said I was hoping it was something simple like a kidney infection
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Hi Retrocath please how long you are fighting with mets in peritonei? My mom has still pain on right side like something from liver, TM are highest ever, waiting for Xeloda as next step. She is afraid of any chemo as the last one 3 years ago was too toxic thas she was in coma for a while.
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Mirka80- Xeloda doesn’t seem to affect blood counts like other chemos your moms dose can be adjusted if needed as it’s pill form. Other then when I did CMF chemo years ago it’s not that bad. Blood work every third week to keep an eye on things. I take a nausea pill thirty minutes prior to taking the Xeloda and it really helps. I hope this works for her. I think I just finished my 11th cycle.
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Hi Mirka80. I'm sorry I missed your post yesterday. It was at least 4 years ago that I really started noticing symptoms. Had it much longer than that. Took until the end of 2014 before it was diagnosed. I'm currently on Afinitor. I don't know if your Mom has tried it or not. My Doc started me out on half dose to help me tolerate it. Worked really well. Hope the Xeloda works well for your Mom. Sending hugs and love, Cathy
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Hi everyone. I am still adjusting so not really able to support much more than to share that I totally understand the tricky line we try to walk. You all have been dealing with these mets much longer - it’s a lot for sure. Started exemestane Friday and have been nauseated since, with daily vomiting (sorry probably TMI). Also am extremely exhausted from anemia so sent my onc a message for resolution. I am not happy with him at all since the progression of belly mets. Why order tests and do nothing with the results? Am I right to expect him to act on these things or do I need a palliative care Dr or my PCP to supplement for side effects? I get a second opinion in a couple weeks with an onc that is considered the best in my hospital system for belly mets. But I am barely able to get out of the house and need resolution of these issues now.
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Nap- are you taking something for the nausea. I’m so glad you will be getting s second opinion. Belly mets are very serious and my opinion (not that it matters) is your current MO is treating it too mildly. You can try sucking on some ginger candy. I get it at the health food store.
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