peritoneal carcinomatosis
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Dearest Cathy and Sheri - we really do go back a while, and you guys were so helpful and caring, i will never forget.
I hate to tell you, but Afinitor scares everyone that takes it. Danni herself was on it a minimum time, of course those damn sores, beyond awful Many ladies on the mets thread were on Afinitor and they all have strong opinions. Maybe check it out. But for sure, it's suppose to be a strong chemo, just a miserable beast. December time, Dani developed a terrible case of mouth sores actually on a different chemo, shehad had radiation to her mandibular and the C section (among many other), anyway on of the things she was given was Diflucan, it just helped a little. Lysine... Was one more reason she could not eat. She wanted to but it was so difficult, so she was drinking all these liquids with a lot of e/t in it, just to sustain her. True nightmare. She actually got down to 72LBs not 82...and the doctors never helped her with recommendations of what to eat, they were harassing her that she was not eating, as if they didn't know that cancer patients have difficulty in getting their body to work. I was just reading in the liver mets, how it all works etc...they are just robots.
Cathy re- loosing your original mamos, that is reprehensible. To be honest, i don't like laws for e/t, but THIS should be included in all the nonsense of medical stuff, if doctor's office will disappear, or material is too old, there should be a way that they at least try to notify the customer that their records will become unavailable. So sorry you had to deal with another idiocracy. What we could take from all this, is how important is to ask for every report, at least.
Honestly docs are clueless. I was never very fond of them as a profession, but the more you hear and life experience, car salesman should be higher on the totem pole.
Fingers crossed on the clinical trial. (be careful on these clinical trials, make sure they are watching ALL of you not just their target.
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Hi Lovely Ladies
I want to give you my deepest sympathies Momallthetime on the passing of your darling daughter Dani. I cannot bear to imagine the excruciating pain that you have endured. You are clearly a remarkable lady and amazing Mother.
Afinator - ghastly stuff!! As I mentioned previously I suffered a significant allergic reaction...not nice! I admire anyone who can tolerate it as I understand that it is a very effective Chemo. Fortunately I am tolerating a 3000mg daily dose of Xelabine (Xeloda in the USA) very well.
Cathy - more challenges for you...just what you do NOT need. It is interesting, in Australia the patient keeps copies of all their mammograms, scans, X-rays, reports etc. I have a wardrobe full..!!!!
Fingers, toes and all wobbly bits crossed for a successful clinical trial Cathy - wahoo!!
I smiled when I read your comment on the veggies. Oh to have a huge bowl of spinach, tomato, raw carrot and capsicum salad!!! Dream on girl....!! I try to make my ‘nutrition free’ diet as interesting and healthy as possible albeit difficult when most veggies and fruit are a big NO! The thought of a trip to hospital from an ‘episode’ keeps me in line......
As we sadly know Peritoneal Mets from breast cancer is rare and my guess is that the majority of MOs and other medicos are ‘feeling their way’. My Palliative Care Doctor has told me I am her ‘first’ BC patient her other PM patients are usually Ovarian, Bowel or Panreatic. She is adamant on the importance of maintaining my low fibre/residue diet to avoid bowel obstructions which in her view is my major danger and I have been lucky to survive 6 in the past 12 months.....nasty experiences as you all probably know.
Sending warm hugs and sunshine to all.
Jane xo
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Dearest Jane, The idea of you crossing all your "wobbly bits" just made my day!!! What a great attitude you have. My sense of humor is for sure the one thing that gets me through this. I'm so sorry you've had so many partial bowel blockages. Do you end up hospitalized? or does it work out on its own like mine (so far and except for one hospitalization)? I have a CT scan today. Hoping for something to show up!! If they could go by how my gut feels most of the time, this would be a slam dunk. This is harder still since most of us have lobular which plays games with scans. I actually had some turkey, mashed potatoes and gravy and cranberry sauce this week. Life almost felt normal. I get my vegetables from a fizzy drink tablet. They work ok but a little expensive. So great to know you are out there! It's felt like we have lost a lot of people on this site. There are so few of us and we learn so much from each other. HUGS, Cathy
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I have been reading this thread over a year since the peritoneal carcinomatosis appeared in my CT report by a sharped eyed RO. In that report, the RO said it is typical for lobular breast cancer spread because there i no mass forming lesion, but my original diagnosis was IDC with lobular features!! So, I went thru Halaven, then Ibrance/letrozole, then the same sharped eyed RO checked my second CT Scan under Ibrance/letrozole and said it is not only in the belly, now it moves to the liver. All these time in the past 7 1/2 years I have no pain no discomfort and counting my blessings.
My Onc decided to use Adriamycin/Cytoxan, it took me a week to finally accept the treatment plan, and was to start on May 21. The weekend before the start of AC, I woke up feeling wobbly and limbs not coordinated. On May 21, instead of starting the AC, I had an MRI of the brain, and just as I got home from the image, Onc called to confirmed I had a TIA over the week end. After checking with my PCP and a neurologist, I was cleared to start the AC. It is scheduled on June 4, but the TIA incident and the bad report on the red devil make me depressed now. My movement has recovered, but I have not resume driving yet, it is a lovely manual car. I know a stage IV has no cure, but how can I re-establish my spirit to go thru the terrible AC?!
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Oh Cling, I'm so sorry. How scary it all must feel. I was so sure you were going to say the MRI of your brain showed cancer spread that saying a TIA was almost a relief. It's the little things that keep us going! AC is scary. It's the very first treatment (after surgeries) that I had back in 2003. It's no fun and you will lose your hair. I remember a side effect of having a hollow metallic sensation. The good part, you won't have to shave your legs and it's summer so your head won't get cold (bummer in the winter!). LOL YOU CAN DO THIS!! I now go into chemo or other treatments with a laugh and smile and my favorite music. I want people around me to know a diagnosis of cancer doesn't mean you have to lose the joy in your life and it helps me to stay positive. I wore soft felt hats and scarves as I found wigs to be too scratchy but do what feels right for you. Please keep us posted as to how you are doing. I know we all worry about each other. It helps me so much to know how you're doing. Wrapping you in a big hug! LOVE, Cathy
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Cling it breaks my heart to hear how sad you are, you were just dealt a new set of issues, who would not feel overwhelmed? But the fact that they wanna go ahead with the tx tells you that they believe you could do it and you good for it. Deep breath. And Cathy has a secret, smiling is contagious, let them know you are here to stay.
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Cathy: I have read this entire thread and have seen you going thru many ups and downs. Thank you for your hug and encouragement, I will try to keep my smile in the infusion room on Monday. I’ve gone thru 2 chemos and still work full time, always with a bounce in my steps. But this time with the surprised TIA, suddenly I lost the bounce! Or the happy mood I usually feel. This is the first time physical limitation on my life, scary.
Mom, thank for continuing stay with us. I will take a big breath, then with a smile when I walk into infusion room Monday. Thanks so much.
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hi everyone, I am new to this site, I hope I’m not in the wrong section? My mother who means the world me has been battling cancer since 2012. She is now 67 years old. When she was first diagnosed I had read some amazing stories from here to keep her hopes up. I decided to become a member in hopes for educating myself and my mother by speaking with survivors and to keep my mothers hopes up and to keep fighting.
In 2012 she was diagnosed with breast cancer ER in PR positive HER2 negative . Of the left breast, chemo was done first, then surgery and then a lot of radiation. After removing the entire breast she was staged at 3B , the tumour was 3 cm and out of the 43 lymph nodes removed 22 tested positive for cancer they said it was aggressive. Then in 2015 they found a stage 1A nodule located in the left Lower lobe which they removed and found that it was indeed non-small cell lung cancer. Then into 2016 they found another small nodule they removed it doing a wedge surgery and again it was said that it was non-small cell lung cancer. And now into 2018 she had another surgery done for her right breast which was removed entirely in there they found a 2 cm tumour with two lymph nodes involved. Also The CAT scan has indicated that her first breast cancer back in 2012 might be the cause for something new popping up in her Peritoneal because of some fluid that was discovered in the linin of the stomach. A week after the news we were sent to do a ultra sound so they could take a biopsy and the fluid had disappeared and only a little was there. The doctors said they could not perform the biopsy because it was to dangerous. They also have been monitoring some spots on my mothers vertebrae that have grown very slightly and for now are not concerning. I have read a little bit about this but it sounds pretty scary.
I read her pathology report and obviously not being a doctor I don’t know much about it but it said that we are most likely dealing with an incurable cancer and it is likely to have been caused by her first breast cancer back in 2012.
Is there anyone out there that has been through the same thing? Or something similar, that can shed some light on this for us? Or some hope. It would be much appreciated. Palbociclib and letrozil Are the recommended meds from the oncologist and of course chemo but my mom is terrified of chemo from her previous experience in 2012.
2012 Left breast ER and PR positive, HER2 negative.
2015 separate incident of non-small cell cancer in the left lung 1 centimetre millimeter nodule
2016 separate incident of non-small cell cancer in the right lung .7 Millimetre Nodule
2018 again a different breast cancer 2 cm and two lymph nodes involved. Plus they say there is something popping up
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Hi Johnny 1982, The first time I went to get the fluid checked, there was not enough to remove to check for cancer cells. I had to wait another few months before there was enough fluid (ascites) to check. I'm so sorry your mother is going through this. Sounds like it has been one thing after another. All I can say is that quite a few of us have been on Palbociclib (Ibrance) and Letrozole or another aromatase inhibitor. I was on exactly that combo and it bought me and extra 15 months. I'm 2 years out from that now. So glad you can be there for your Mom. My family has made so much difference in how I deal with this. Please keep us posted. We are here for you. HUGS, Cathy
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Hi Cathy, thank you so much for your response, it means so much to talk to someone that knows about these issues. Im just so scared, through the entire 6 years, watching my mom fight this nasty bug, being there through every surgery, through every bad news the doc had to give us, and having to observe my moms face every time she got the news is honestly killing me inside, to see her reaction. I wish I could do something for her. I would do anything help. The doc said lets find out what this is first, and then we will deal with it, but most likely based off our experience it is in the peritonieal, and its most likely from her very first breast cancer in 2012. I asked what this means for my mom in the future and he said if it is what it is, with medication treatment anywhere between 3 to 5 years or more, without medication anywhere from 2 to 3 years. Are they always right about how long a person has? Can this be early stage? do symptoms present themselves in early stage? or are the sysmptoms my mom is experience a later stage? some of her symptoms right now are burping often, weight loss, stomach hurts, she has puked a couple of times. I just don't understand how they didn't see this? all these scans and it wasen't detected and now all of the sudden just out of no where? like how is that even possible?
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Jonny- I was fine then started with some stomach issues especially after I ate.Had the hiccups s lot then bad acid reflux where I would wake up choking on it. Then came a blockage and the pumping of my stomach. It’s all crazy.
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I’m sorry to hear that. I will have all of you in my prayers. I wish there was a cure. I heard immunotherapies? What about Mexico is that all a load of crap? Or is it real? I heard something about some cure they had on mice curing triple negative cancer and they aren’t apparently bringing it out to trials. Maybe it’s all nonsense
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Hi Johnny, One of the issues most of us deal with is that our peritoneal spread does not show up on scans until they can detect the damage it is doing. I have lobular breast cancer, the 2nd most common. Ductal is the most common. My type of breast cancer grows in strands or lines and webs. It showed up in my original diagnosis of the right breast as a "thickening." Since it doesn't grow as a tumor, it hides really well on scans. It could have been there for a very long time without symptoms. My peritoneal carcinomatosis originally gave me bad acid reflux and heartburn symptoms along with feeling very full all the time. I finally developed an issue where my stomach didn't empty very well (gastroparesis). It still took me another few months to get a diagnosis. I immediately started chemo and then went on Ibrance/Letrozole combo. No one really knows how long a cancer patient can live. It's such a crap shoot that we got it and it's such a crap shoot that it spread. I think your Mom's doc is being honest but there are so many variables in treating cancer. Your Mom might do even better than expected on treatments and surpass the doctor's opinion. I WOULD STRIVE FOR THAT! I'm pretty sure I almost died 3 and 1/2 years ago but when the chemo kicked in, it changed everything. I'm still here all this time later. I certainly have my ups and downs but enjoy every day (except episode day) I get. I take solace in the music I love (I'm a total 60's hippie girl), watch favorite shows and movies. My daughter and I love to watch really bad horror movies together. Anything we can do to get a good laugh. I love to read. I live in the Seattle area and enjoy every day of sunshine we get. It's beautiful here. I know your lives will just be about cancer for awhile. Take joy in your relationship....mother, daughter friendships are just the best. Hang in there. We're with you! Love and hugs, Cathy
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Hi ALL, Had revenge of the barium after CT scan yesterday, a heart test today, and bone scan Tuesday. My Doc said they have not actually gotten official results of mammogram yet. I hat that last Tuesday. What is it about tests. I'm exhausted. Clinical trials person told me this morning that peritoneal nodularity showed up on this scan. No call from Doc though. Maybe that's something they can monitor?? I just don't know. All scan people look at me in horror when I tell them I need something to show up on tests! They think I'm crazy. (maybe a little). I can't believe with these horrendous episodes I get that damage or inflammation or something doesn't show up better on tests. This has just become ridiculous. Well, just checking in. Hope you all have a great weekend. HUGS, Cathy
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Im going to be honest.... Im lost for words... I honestly don't know what to say, the only thing i know for sure is Im so proud of you ladies, that you are strong and take it as it comes. I know my mother is strong and Im trying to keep her strong by telling her about all of you. I guess she is just tired of hearing bad news, She feels like "why me" I sometimes don't even know how to answer. Yes every moment and every day is a blessing, and every moment I get with my mother and my mother with us(her kids) is a joy for her. My mom keeps telling me she wants to see me achieve my goal of becoming a police officer. I have the opportunity to go and become one, but Im afraid of leaving for 6 months and losing time with her, or leaving and not being by her side when she needs me. We have a appointment June 8th, where the oncologist will explain what he saw in the blood test she did, and she has another test called a endoscopy, and apparently they said that when they did the ca scan they said her chest was clean but they noticed that her lymph nodes were inflamed in her chest and since they could not take a biopsy of the fluid because it disappeared they will most likely do the endoscopy along with take a biopsy of her lymph nodes i assume? I will definitely keep you up to date with everything, and thank you for replying back im really happy i joined this. Hugs, Johnny
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Welcome, Johnny - glad you came here to support your mother. I think it’s good she is doing an endoscopy, which will give her and you a better idea of what she is dealing with. An endoscopy in 2014 for me, after symptoms of terrible acid reflux and vomiting, found that my duodenum was 100% blocked and was causing my issues. (Know that what I experienced is very rare.) I’m still here after 4 1/2 years of MBC, so this can be a long journey. There are many proven treatments, hormonal and chemo, that can knock the cancer back. I’m currently on my 7th different treatment - some have worked for awhile and some never did work. It’s important to have an oncologist who will listen to you and answer your questions and concerns.
Keep us posted - we are here for you.
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Hi Cathy - you are a trooper going through all those tests. I know it is completely exhausting! It is also annoying that our kind of cancer doesn’t show up well on tests. Really??!! We know it is there! Hang in there - glad it is the weekend for you to have a bit of a break from all the testing.
I’m so tired today. Don’t feel like doing much of anything now. I went to my nephew’s baseball game and now I’m wiped for the day and is only 2pm. Ahhh....the life of a metster. Hope others are feeling a bit more energetic.
Waving hi to everyone!
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Wow, yes i agree you are a trooper! Very strong ladies both physically and mentally. I admire your courage, and positive attitude through all this, and I am also happy you are here, helping us all. My mom told me today that she doesn't want to do chemo. She had a terrible experience with it back in 2012 when she was first diagnosed with breast cancer. Those were dark days. It breaks my heart to see her going though this.
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Johnny maybe the doc will give you some hope. Hang in there.
Cathy you gave me a good laugh, i could just imagine those faces! I really get you. I did that all through my kids growing up, i was the mom saying to the doc, you sure it's not strep?? I thought if i could just give them antibiotics, and the fever would just disappear as oppose to the long winded cold...I Wish for whatever works best for you.
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Southern so sorry you are so winded, what's my excuse?? I am glad you had this nice time with your newphew! Good for you.
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Hello ladies,
Today I convinced my mom to go for a walk. We walked 200 meters and she was so tired we had to stop and rest. How? She hasn't started chemo nor is she interested doing it if it was offered. When we got home she was done. Is this normal? I'm beginning to really get scared.
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Hi Johnny! Your Mom was originally diagnosed at stage IIIB, went through chemo and radiation, etc and then just had a right breast removed and possible peritoneal involvement. Your Mom has every right to be exhausted. Between surgery and however her body is reacting to peritoneal spread, it's going to be hard for her to bounce back. She is physically and emotionally exhausted. Let her tell you what she can handle. Give her positive support but don't expect her to be the same. I don't think any of us are ever the same. We just keep on plugging along doing the best we can. We all have days where it's hard to even get out of bed. Gentle hugs to both of you, Cathy
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Cathy you are one of a kind. What you said Brought tears to my eyes, your are so right. I'm just so shocked as to how fast things have changed. Three months ago she was fine, three months later it's crazy how fast. It's as if I don't want to except it. But your right, I'll let her tell me what she can handle and what she can't.
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Hi All
Cathy, I am feeling for you finding the energy to undergo the extensive tests. It shall be interesting if the peritoneal mets do show on your CT scan. For me the 'nasty little b.gg.rs' have been 'waving at me' from the outset. I agree with you that I would rather 'see them' than not. At least when I have my contrast CT's we can ascertain progress (or otherwise). Mine are very extensive and are quite visible. Good luck and please let us know.
You asked about the hospitalisations from the 'episodes' (bowel obstructions). The six I mentioned have all been hospital stays....nil by mouth for days etc. I do have quite a few 'episodes' that I manage at home - all very yucky!!! We think that the capecitabine is working as my pain level, nausea and tumor markers have decreased in the past 6 weeks - Yahoo!!! I wear a fentanyl patch for pain and have a fridge full of drugs for nausea, pain etc. Do you wear a patch or take anything regularly for pain?
I had two units of blood transfused yesterday (Monday) as my haemoglobin was 8.4. I slept all weekend...! I asked for the blood to come from a 20 something athletic spunky male. My med team just laughed at me......
Hi Johnny - what a fabulous son you are! I can only reinforce Cathy's wise and reassuring words. Peritoneal mets is a very nasty debilitating disease. Like your Mom, I was super active one week, doubled over in pain and vomiting the next week. My life literally changed overnight! Quite frankly 14 months later a good day for me is when I can be out of bed for half a day! Each day is different and I am sure that your Mom is also shocked at the fast pace of change. If she can be encouraged to undertake treatment I can sincerely say that it has helped me however it may not suit your Mom. Your love and support is the 'best medicine' for her at the moment. She is so lucky to have you! Healing hugs.
It is wonderful to still be 'on the right side of the grass' and I sincerely hope we all stay that way for a long time.
Warm sunshine and hugs everyone
Jane xo
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Jane, I'm just so sorry about what you are going through. I hope you have many days of joy that help compensate for the lousy days!! I have nausea medication and pain meds but the latest has helped me the most....Phenohytro. It has phenobarbital in it and something that stops my intestines from spasming so much. If I can get the spasms to stop, I can keep myself from going full blown. It unfortunately effects my speech in that I lose my words. I find myself playing "charades" with my family. You know, sounds like and how many syllables! I had to stop and think about "syllables!" Off to the shower...bone scan today. Love and hugs to you Jane!! Cathy
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UGH!!! I sometimes get leg pain. I'm pretty sure it's caused by the Letrozole. It usually takes heat to get it to ease up. I managed to take the bone scan for an hour (full body) but then they wanted me to stay in the same position and do 6 more frames....ribs, etc. My left leg below the knee became so miserable that I couldn't finish the scan. They wanted me to continue to hold the same pose, and I just couldn't do it. My leg was screaming at me. I tried rubbing my leg and walking around for a few minutes and nothing worked. They weren't very nice about it. Like somehow you put yourself into that kind of misery on purpose! It just made me realize I AM SO OVER HAVING CANCER TODAY!! I just needed to tell someone who would understand! HUGS, Cathy
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Thank you Jane and Cathy. Im just scared, I'm 36 years old, I have been beside my mom from the day i was born. She isn't just my mom, she is like my best friend, my life, a person i would give the world to. When she cry's and says she doesn't want this, doesn't want to be like this, i don't know how to answer other then just hug her. How terrible it is to hear and feel these things my person is going through. And these doctors here they are so cold, they are like robots, they give you the scariest news, and then they slip away, leaving you thinking of what just happened? i don't want to lose my mom. I love hero much . I can't picture it or life without her. I hope she take the treatment. She is also thinking of doing herbal stuff. Natural pathic stuff. I hope that stuff works, all i know is im terrified and i want her to make a good decistion.
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Hi Jane - glad that the Xeloda is working. Sounds like it is improving your QOL, which is what we all need - yea! No wonder you are tired with your low hemoglobin! I had that a few years ago and I could barely function. I hope you feel better now with the transfusion.
Cathy - those scans can be so incredibly miserable. It is impossible to keep those same poses for any length of time - those technicians should know better! It seems like it would be simple yet for anyone who has done it, it is not easy at all! Having cancer sucks, for sure. Ugh.
Here’s to a better day tomorrow for all of us!
💕💕
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Dear ladies,
My mum had ovarian mets in 2011. Seven years stable on Aromasil.
She is now having abdominal issues: pain in the lower back (she defines it as feeling gassy and intense), pelvic pain.
She is going todo the ginecologist. She had a hysterotomy (she has no uterus, no ovarios, no fallopian tubes anymore).
One question. When you started experiencing this abdominal issues, was is the whole time or was the pain coming on and off?
Sorry about my bad english and thank you.
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Alicia- your moms back pain could be her kidneys aren’t being able to empty properly. Myself and one other lady have had this happen. Our belly mets are crushing our urerters preventing it form getting to our bladders. The back pain from a backed up kidney is intense and constant. A ct scan will tell if this is happening. Sorry your mom is in pain
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