peritoneal carcinomatosis
Comments
-
Cling- A/C is powerful stuff. I too was wide awake for a couple of days then crashed hard. I would have to really think hard about ever doing it again. It did however push my cancer back when I was near death. I had terrible heart palpitations even for a long time after I was off it. So far Xeloda is keeping things stable. I have a ct scan on Tuesday which I pray doesn’t show any new areas. Keep up the strength and I’ll pray you get through it with good results. Diana
0 -
Cling, AC kicks butt for sure!! Get as much help as you can so you don't have to worry about cleaning house and all that kind of stuff. I was lucky. My daughter was able to help me a lot. She would come and do my laundry for me. We did a lot more take out than usual so no one had to cook or make a mess in the kitchen. I was embarrassed at the time because one of my sisters came to visit me when I'd been having chemo for about 2 months. I couldn't believe how dusty parts of my house had become! At this stage, I no longer get embarrassed! I'm with you in spirit!! Hugs, Cathy
0 -
Hello, thank you for all the great information. I have no clue what the oncologist is saying either about gaining weight. Just like you said it doesn't make sense. Ill ask him when i see him again.
What doesn't make sense is weeks ago they said that it could be in the peritoneum and they are very concerned with the fluid build up in the stomach lining, so we were sent to do a ultra sound and a biopsy of the fluid. When we went in for the biopsy the fluid was all gone. We spoke to the oncologist and he said they see some activity in the peritoneum but because they couldn't take a biopsy of the fluid they will focus the lymph nodes in her chest which appear to be larger then previous scans. So today they got the samples they needed and the doctor said they look abnormal and will sent off for testing and will will know June 22. The doctor said they suspect that all this could be from the old breast cancer. All this back and forth is really confusing for my mom. Im really scared of the stage they will come back with. And I don't know if we still have hope. One day my mom is full of life and happiness the next day she is down. I really hope we get at least a break.
0 -
Hello All! Started clinical trial on Monday. Went in to fill out forms and gave 9 vials of blood and urine sample and 5 vials today. Every time I go I fill out a questionnaire about how I'm feeling. Already tired of the questionnaire! lol I had Cytoxan infusion today. They start with I.V. of a steroid and anti-nausea. I had to have them contact the Doc because steroid was full dosage. Last time I got full-dose steroid, I thought I saw a squirrel running through my house. When no once else reacted, I realized it was me. LOL Told Doc and he immediately said, "Too much steroid!" That was a few years ago but saw no reason to repeat my "steroid acid trip!" LOL I saw my doctor first thing and he looked at my scans with me. He showed me abdominal CT. Finally showing signs of active cancer and damage. Abdominal wall thickening and a lot more peritoneal nodularity along with more ascites. I would guess about 1/2 liter. He is going to monitor that. We then looked at my CT of chest. He's pretty sure by the way it looks and location that area in lower lobes of lungs is cancer...the ground glass opacity. He's not freaking out (or me for that matter) because I am stage IV and my cancer is slow growing. So what else is new, right? We then looked at my bone scan. He showed me the whole scan. I am surprised at how much damage cancer left. He zeroed in on mid to lower spine. It looks terrible. Not lighting up but he's concerned that it seems worse than previous bone scans. So we will continue to monitor that also. Quite a day. This clinical trial is going to feel like a part-time job. I have every intention of being in this for the long haul. It's too important!! Dead cancer cell injections on Friday. OH BOY! I'll be there with bells on! HUGS, Cathy
0 -
My gosh, Cathy - you have been through a lot! Thanks so much for keeping us updated. Sorry to hear about all that is going on with your test results but your MO seems to be right on top of it. I haven't done that thorough of testing since I was diagnosed Stage IV!
Been so incredibly busy with lots of family in town (and many staying with us) since last Wednesday. In the last few days we've had my son's high school graduation, my birthday, my in-laws 65th anniversary, and wedding dress shopping for my niece, not to mention chemo last Thursday and again tomorrow. I AM TIRED!!
Hang in there all. Johnny, keep us updated - I know it's a lot to take in right now. Cling, AC is very hard yet can have excellent results.
0 -
Happy Birthday, Sheri!! I hope you have many many more!! WOW! That's a lot for a gal with cancer in ongoing treatment to get through! I bet all the family stuff was fun and life affirming. Chemo still going well? Hope for easy treatment today. I was up in the middle of the night with steroid insomnia. Glad they didn't give me full dose. Off to find some coffee! Hugs, Cathy
0 -
Thanks, Cathy - chemo going OK and birthday was OK too. Mostly celebrated my in-laws 65th anniversary. I have been on Halaven now almost 11 months. I seem more fatigued and takes me a bit longer to recover from the steroid crash the end of day 2. My legs are a bit numb but not bad and I have the metallic taste after every infusion starting Day 3 for a few days. It was nice to have family in town but honestly too much activity in one week. My mind may enjoy all of it but my body doesn’t. Had 9 in my house when I’m used to 3. Now trying to wash all the various bedding and towels. What fun. (Yes - that is sarcasm.)
Cathy, do you still have your hair? Couldn’t remember if hair loss is a side effect of Afinitor.
My worst problem today is left shoulder blade pain. Constant ache if I try to move at all. Has anyone ever had this issue? I have a heating pad on it right now but wondering what is causing it and if Halaven is still working. I don’t think I did something physical to it, so I worry about my cancer spreading now. I’ll have to call my doctor tomorrow, as it was mid-cycle today and I didn’t see him. Another new pain/symptom.....great.
Goodnight all - hope to hear from everyone soon!
0 -
Hi Sheri! I hope some family stepped up to help. It's always nice to see them but always a relief to see them go. I hope you did something nice for yourself for your birthday. I've reached the point where I order myself something that I really want. I'm never disappointed! I'm sorry Halaven is kicking your butt. Chemo is definitely cumulative and I really felt it after a few months. It really does take longer to feel better in between cycles. .I do still have my hair. It actually got thicker for a change. The good news was that I didn't have to shave my legs so often. Hair thinned out and got softer. I'm sorry about your shoulder blade pain. Sending love that it turns out to be normal aches and pains. I've had some doozies lately. So my uric acid has suddenly gotten bad. Maybe Afinitor. I read today that can happen with cancer treatment. I really want a good case of gout! The hits just keep on coming!! I have suddenly gained 13 lbs since the first part of May. I know ascites is part of it but I just don't know what's going on. I was eating a bit more but can't believe it's enough for this to happen. It's all right out in front of me too. I do notice my legs aren't so birdlike. They lose muscle tone when I'm not doing well. They look better right now so I have gained some weight and muscle. But 13 lbs. is ridiculous. This is after I just bought a bunch of clothes for the trip to New Orleans. Been tired all day. Off to bed early. Love and hugs, Cathy
0 -
my moms belly was getting bloated, then it disappeared now she looks pregnant and our appointment with this oncologist is 15 days from now ..... I feel like this guy is crazy. This is getting worse and worse and he is booking us in carelessly. I don’t know what to do should I take my mom to the hospital?
0 -
Johnny- is she in pain from her stomach? Sounds like ascites.
0 -
From what she says sometimes she is in pain sometimes she has mild pain and sometimes no pain at all.
The size of her belly right now reminds me of a woman that is about three months pregnant
All I want to know is this an early symptom or is this a late symptom
0 -
Johnny- I had ascites three years ago and the chemo has taken care of it.
0 -
Well I’m happy thatsresolved for you. My mom does not want to do chemo she had a very bad experience in 2012 and she is terrified of it
0 -
Johnny,
Ascites can come at any time, I believe, so not categorized as either an early or late symptom. I think your oncologist should address next steps for your Mom though regarding this, as ascites can be quite miserable. If she gets too bloated, they can drain the fluid but it seems her symptoms come and go. You could try to call and see if she can be seen by her doctor any earlier. Hopefully her pathology report comes back very soon so you can see what overall options they can give your Mom.
Also, please know that oncologists (or doctors in general) are not really accurate on estimating how much time a patient has left to live. Circumstances change, especially if your Mom does any type of hormonal or chemo treatment. I know she doesn't want to do chemo. In my situation, my oncologist thought I would have been gone in a year after my official belly mets diagnosis in May 2014 and I'm still here 4+ years later. I don't ask him to estimate how much time I have left as he truly has no idea right now.
We will continue to support you and your Mom and try to answer your questions as best we can. 💕
0 -
My sister's and I wanted to let you know that our mother, Orina Hodgson died today. All three of us were with her and she died peacefully. She wanted us to share this with you.
0 -
Dancing’s daughters,
I am so very, very sorry to hear of your mother Orina’s passing. Thank you for letting us know. Your mother was such a kind, sweet soul and I remember she just recently took a vacation to visit family. It’s always too soon; never enough time. I will say a prayer for you all tonight - may God provide peace during this tremendously difficult time. 💕💕
0 -
Orinda’s daughters: thank you for letting us know Orinda ‘s passing. It is so unexpected. She had been on this thread for a short time, but she showed to be a very caring person on her postings. We will remember her. Prayers and peace to you.
0 -
Dear Daughters, I'm just so very sorry for your loss. Your Mom was wonderful! Wrapping you in a big hug... Cathy
0 -
Daughters so so sorry for your loss, and thanks so much for taking the time to let us know.
Cathy cheering you for gr8 news on this new full time job. It's true, that's what clinical trials end up being. Stay on top of your symptoms, i just feel the trial ppl put too much effort in the part that they are trying to treat.
Southern...you are a superwoman...good for you.
And Johnny it's very sad that you don't have a sane communication with doc. It's more common than you think. Yes, the bloated belly could be ascites, that could be drained if needed, but best would be to find out why is she having these symptoms. And yes, ppl could live for a long while with the ascites, i think a lot of different aspects are taken in consideration of how this affects someone. Also, re: Chemo, at this time it would be given at a much lower dose, maybe it's worth a conversation.
0 -
Thank you for letting us know that your mother Orina has passed away. I read this on annother site (Inspire ) and was so very sad to hear the news. You mother wrote the most honest and uplifting posts and never seemed to lose her zest for life and awe at nature's wonders, despite her many trials with this disease. She will be greatly missed as an inspiring contributor to Secondary Breast Cancer forums and I can only imagine how much she will be too by your family and her many friends. Please accept my sincerest condolences for you loss. X
0 -
Thank you to all of you for being supportive through this time. Believe me it gives us hope through real life experiences.
Yesterday I had to call the ambulance because my mom couldn't couldn't stand or walk straight, complaining of sever pain in her back, belly and chest. Her belly now looks like 5 months preg.
We came to the hospital and were seen by the emergency doctor. He read out the pathology report to my mom about the EBUS results. Out of the three lymph nodes in my moms chest one tested positive for breast cancer. So I guess that means it has metastasized. But the chest CT is clean so I guess the breast cancer is contained in the lymph nodes.
As for the belly, they did a ultra sound and found there to be a lot of fluid build up also they say in the pathology report that they might be seeing liver Cirrhosis But because the technician was not available they sent us home.
During the night my mom went through hell waking up every 15 mins because of the feeling of vomit. Today we went back to complete the ultra sound and the doctor said there is to much fluid they have remove it. We are currently in emergency waiting for this. The doctor said that it looks like my mothers liver isn't functioning properly. This one came out of left field, I don't know know what to hope for now?
0 -
Oh Johnny, I'm so very sorry for you and your Mom. Sounds like you're going through hell. Thinking about you both.... Cathy
0 -
Johnny, I’m so very sorry your Mom is going through all this. I know it can be and is very overwhelming. I would try to just take one step at a time. I’m sure the doctors will focus on the most pressing of the issues first. I really don’t have any experience with liver problems, so I can’t give you any guidance on that. I’m not much help but know that I care and am thinking and praying for you and your current situation. 💕
0 -
ok so we went and removed 4000 mL of fluid from my mothers stomach lining. Then we went and saw the oncologist. The EBUS test revealed breast cancer in the lymph nodes in the chest. The oncologist also indicated that there is breast cancer in the stomach lining but I don't know how he knows that, he didn't take a biopsy of the fluid they removed from my mother stomach lining area. So I don't get how's he says there is breast cancer in my mothers stomach lining? also he said the Liver is not functioning properly so I have no clue what that means, I asked him that but he didn't really dwell on that And somehow ignored do answer it.
Then he offered my mom Xeloda, But gave her a prescription for Teva-capecitabine is this Xeloda? My mother asked how long she has he said we are not that good at predicting but based on the your lack of appetite, lack of energy, lack of will if we do not do anything no medication no nothing and let it take it's course we are looking at 7 months, if though you decide to take xeloda and it works it could prolong your life 2 to 3 years. Does anyone have any information on this? does it work? He also talked about care is this normal? I'm honest king not feeling so good. I feel like someone sucked my soul out of my heart. Now I'm more afraid than anything
0 -
Hi Johnny.
Capecitabine is the chemical name for Xeloda. I'm not sure I completely understand your post, I am surprised they would not look at the fluid they pulled from your mother's peritoneal cavity to confirm breast cancer but in all likelihood that is what it is if it is in the lymph nodes in the chest.
In terms of your question regarding palliative care, all of us stage IV folks are palliative, currently there is no cure available and so, treatment is focused on slowing down the cancer and giving us as much quality of life as possible. Don't confuse this with hospice which is typically focused on end of life. I know I struggled the first time someone used the term palliative with me as I am no where near the end of my journey. It takes some getting used to.
I'm glad that your mother was able to have her belly drained. I'm sure she is feeling much more comfortable today.
Hugs. Pat
0 -
Thank you Pat for your response it clears up what palliative care really is. I will get her family physician who is a really close family friend as well to look at her pathology report and maybe shed some light on the fluid Yes I also find it odd because we drain the fluid and two hours later we saw The oncologist and he didn’t put a report in to collect a specimen nor tell us anything about the fluid. All he said is that my mother has breast cancer in her stomach lining. Thank you again for clearing up what palliative care is trust me when I heard seven months it felt like my moms life is over. I was so scared
0 -
I understand completely how hard that would be to hear. But that was his worst case Johnny. None of us know how long we really have but with treatment hopefully you can build many more memories with your mom. There are options. Hold onto that.
Sending a hug from Canada.
Pat.
0 -
Hi Johnny
I want to add my reassurance that the treatment for peritoneal mets can be very effective and increase life expectancy. I was told exactly the same prognosis as Southernsurvivor was given. Last July my MO advised that I would be lucky to survive 12 months.......WRONG - I am 'still on the right side of the grass'!!! And, I hope to be here for a while....
I had IV Abraxane for 11 months until February this year with very little effect on my cancer and my tumor markers were steadily increasing.
I changed my MO in February this year and he started me on Capecitabine. Hopefully you shall be relieved when I tell you that after 5 cycles it has had a dramatic effect on reducing my tumor markers, pain level and nausea. I am currently on my 6th cycle
I have found Capecitabine to be very tolerable with little side effects. I must say that I am constantly fatigued and have the energy of a disabled snail. However I do enjoy life and sincerely recommend and encourage your darling Mom to 'give Capecitabine a go'. I feel certain that it shall provide her with much needed relief.
Pat is so right - there are more memories for you and your Mom to make
I send loving and healing hugs to you and your Mom.
Jane
0 -
thank you Pat and Jane love you both. Jane the Capecitabine is it IV form or pill form? My moms oncologist gave her pill form
0 -
Johnny, the capecitabine (Xeloda) is in pill form. I too took this for about 15 months, and it was effective for that time. As the others have said, I found Xeloda quite tolerable. There is a thread called “All about Xeloda" on this forum that you should check out, as I found it very helpful for tips for the common side effects.
Take care and I will be rooting for your Mom on Xeloda!
0
