peritoneal carcinomatosis
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thank you I will let my mother know and hopefully she feels more at ease to give it a go. Thank you so much, love and hugs from me to all of you. ❤️❤️
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Thank you so much. I will let my mother know and hopefully she feels more positive to give it a go. Hugs 💕.
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Hi Johnny, one of my first treatments was Xeloda. I was on it for months and did very well. Hope you are taking care of yourself...you need to get some rest and take time to eat. You both are on such an emotional roller coaster right now. Glad you came to us for advice. These ladies on this site are all amazing!! They have helped me so much. Keep us posted! Cathy
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thank you so much Cathy! I am glad I came here too! Right now we are trying figure out why my mom cannot go to the washroom to do a number 2. She is taking stool softener but nothing is working?
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my moms stomach has been hurting her all day, and just now she had a sandwich and couldn't finish it all off cause she started experiencing really sever pain. I honestly don't know what the hell is going on ..... should she just refrain from eating solid foods and just eat soups? She doesn't eat much lately and i am really feeling terrible for her ...... also she takes pain meds for other pains and now for her stomach pain and i believe this is causing her to be constipated.... i honestly have no clue what to do .... i have tried senna laxetive... any suggestions , does anyone experience these pains too? constipation, pains in stomach,
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Johnny- how many days has it been since your mom has had a bowel movement? I went 10-12 days and had a blockage. You don’t want it to get to that point. They ended up pumping my stomach. Not afun thing. Maybe try soft things like mashed potatoes, squash, applesauce etc...
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I just realized that there is a email notification on this, and i just turned it on. Sorry for the delayed response. Wow 10-12 days, my mom hasn't got for 5 to 7 days so far. I went and got her "senna laxative" and it didn't work, then i tried glycerin suppository and it worked a little for her. she will try again tomorrow.
What scares me the most with my mother is i can see the changes real quick. In may she was ok, walking around pretty normal, but now i see things have gotten pretty bad. She can barley walk around, she has lost a ton of weight, the fluid we drained the other day is slowly coming back. Im trying to find way ways to beef her up, to give her some weight but its hard to get her to eat when this fluid builds up. this is becoming real scary. It looks like im losing my mom before my eyes and i can't do anything. Im trying everything without making her feel uncomfortable. Today she had a toast with a tomato and after started to experience some serious pain, i have never seen my mother in this kind of pain. She took her pain meds and then she started to act all weird. these pain meds make my mother hallucinate its all so weird.
And finally something that really scared me, During the appointment my mothers oncologist said this "if we don't treat you and do nothing at all we are looking at 7 months". "if you start Xeolda and it works/responds you could spin this off and have 2,3 or 4 years" a couple of days later the oncologist updated and posted his notes on the UHN portal where i could read his notes and findings so i can keep my mom up to date with all her reports and he changed something he had told us in the appointment. he said "I spoke to the lady and told her that if we don't do any treatment whats so ever this could be fatal in 3 months and if you do treatment and it works it could spin things off to 2,3 or 4 years. This guy went from 7 months to 3 months in his report. ???? and now looking at my mom and seeing her health deteriorating and i am beginning to panic.
I was wondering if maybe the cancer treatment hospitals in the USA are any better? Maybe in cancer treatment hospitals in the USA are better then here? Also i hear people going to mexico and getting healed... or is this a scam? And does anyone know about natural medicine such as mistletoe
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Hi Johnny. I have never heard of any medical treatment in Mexico that is really working. You can bet the medical establishment would be all over this (it's all about the money after all) if some treatment in Mexico was actually working. If someone out there has a different experience, I would love to hear about it. You need to have your doctor change your Mom's pain meds if they are making her hallucinate. In my opinion, you need to put your Mom on a diet of soft foods. Nothing with fiber. Shakes, juicing, toast, mac and cheese, mashed potatoes (I have some with an egg on top for protein) and soups. Foods easily digestible. I'm sure there are other foods as well some other members of our site might suggest. It doesn't take much to really set abdominal issues off if her gastrointestinal track isn't working like it should. It sounds sluggish which is what mine is like all the time now. I wonder if after seeing your Mom the Doc changed his opinion to lower expectations with no treatment. But he at least had the same hope if she gets treatment. The biggest thing I have learned from my cancer experience... YOUR PHYSICAL CONDITION CAN CHANGE QUICKLY IF YOUR TREATMENT IS WORKING. 3 years ago I was going to my next appointment to see the Doctor and tell him I was going to stop treatment. I was so bad I was practically crawling into the shower and then back into bed. I felt like I was dying. I had the discussion with my husband and we decided this was the right course. And then 2 or 3 days later the treatment kicked in and I just got progressively better. That's how fast our condition can change. No one can make the decision for treatment except your Mom. I hope she will at least try the Xeloda. Her symptoms could start getting better. I don't know anything about "natural" medicine. But I think your Mom needs to start out working on kicking cancer's butt with the "big guns." This is my opinion only. I just hate to see her suffer if she has a course of action that could be easily tolerable for her. Sending you both love and hugs, Cathy
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Johnny- I agree with Cathy. About two years ago they didn’t think I would make it through the weekend. I was in a wheelchair. Here I still am and walking just fine. I’ve been on many chemos and Xeloda has been the easiest so far. I actually have less cancer in my abdomen according to a recent scan
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Wow I’m happy you are all hear. Asides from Xeolda what else is there? My mom is terrified of Iv chemo.
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Johnny, Xeloda is not I.V. chemo. You take it in a pill form. There is also treatment taken by pill called Afinitor. Also there are many anti-estrogens that might help your Mom. There is also the Ibrance/Letrozole treatment your Doc first talked about. These are all pills. No I.V.s. Hugs, Cathy
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I’m sorry I wish I knew more so I don’t ask stupid questions. Thank you for all the information. Hugs
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Johnny, from my experience and I think from several here also, we got positive results from Xeloda and it’s also convenient that it is in a pill. Just my opinion, I do think your Mom’s doctor was wise in recommending that one. I also agree with Cathy, now is the time for the “big guns.”
Thinking and praying for you and your Mom tonight.
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There are no stupid questions Johnny. We all end up in a trial by fire, learning as we go. I agree with the others, now is the time for the big guns to beat it back. One thing, you may want to try to reassure your mom. There are many non IV chemo options but, should she need to go down that route in the future, it’s not as bad as she is imagining. Nothing she needs to think about for now though...
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You are all sweet hearts and I think you again for keeping our hopes up and keeping us striving forward. Today my mother starts Xeolda I pray this works
I will keep you all in my prayers. Hugs0 -
Johnny, I'm up at one a.m. on the west coast of the U.S. because I can't sleep. You just made my day. LOVE, Cathy
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thank you
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I don’t know if it’s Xeolda or if it’s just my imagination but my mother looks a bit better today, she also has walked around more, hasn’t hallucinated much today. Even though she hallucinates even when off the pills lately. But in the end she looks a little bit better her stomach on the other hand is starting to grow we have another appointment on the 28th to remove the fluid it’s absolutely crazy how two months ago my mom was walking around looked normal and two months later she is bedridden and miserable and 20 pounds lighter. I hope these pills work.
Hugs
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Johnny, it's going to take awhile for the Xeloda to work. Give it time. Don't lose hope. Hugs, Cathy
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As Cathy indicated, it takes time for the Xeloda to work. My MO expected a clinical response after two to three cycles with each cycle consisting of three weeks (I think - my treatments are all running together in my head LOL)
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Dear all, I am back after long pause. I read all your posts and happy all of you are "stable". My mom is doing well even thought she has some progression. Our MO was out of office for three months therefore we discussed her treatment with other oncologists. One of them decided to make PET CT scan which was doing for the first time. As result it showed progression in bones, fortunately only one small place in leg. Our MO came back today and was sad and pleased together that after 3,5 years on Faslodex only there is such a small progression
we are happy with him as it is maybe the reason why markers are going up. He ordered radiotherapy to treat this metastasis. His was full of positive energy today and discussed every option with us for more than hour. Mom continues with faslodex. Only one curiculous thing in my mind that carcinomatosis didnt show on PET Ct scan. Only very small amount of ascites. Sometimes I consider if she has any. But I am happy today, the bones are not so bad
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today I witnessed The worst my mom has ever been. felt like she was barely hanging on, barely walking, she needed to hold on to me because could drag her feet. she could barely stay awake.
I wish I could physically grab this thing that is ruining peoples lives and have my way with it. I honestly can't understsnd it or maybe it’s true that I don’t want to admit it or come to terms with it. I’m so afraid of seeing her suffer.
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Johnny, I'm just so sorry. I hope your Mom is better today. If not I wouldn't hesitate on calling her doctor or someone on call. I had chemo today. Feeling a little out of it. Sending lots of love. Take care, Cathy
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thank you sweet heart i appreciate it. Today she was better but still, it’s confusing and frustrating for her that just last month she was walking around normal and now she can barely walk. We have a Appointment tomorrow to remove the fluid, while She is in I will go arrange A appointment with her oncologist also to talk about pallietive care.
Wish I had you ladies close by. We could have met up. Your a trooper Cathy hang in there you are our shining star.
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Hi Mirka - thanks for checking in. Sounds like your Mom is doing quite well! Such a long run on Faslodex. I will say belly mets are fickle and sometimes don’t show up on scans.
Johnny, so sorry this is such a roller coaster for y’all. Agree with Cathy, stay on top of it and call your MO if needed. I’ve been guilty of not wanting to “bother” my MO, but have gotten better about asking for help when necessary.
Cathy, how often is your chemo now? Hope it’s killing “the beast!”
Waving hello to everyone. I have my Halaven chemo tomorrow. Here I go again....
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Dear Johnny, I'm proud of you. You are following through!! That's the biggest thing...to stay on top of it. I know you must be worn out. Take care of yourself. Thank you for the compliment. You made my day. Each and every woman going through this disease is a shining star, especially your Mom and you!! Cathy
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Hi Mirka80, Sheri is right. Peritoneal mets are often hard to detect on scans. I've been having terrible episodes for years and about the only things that showed up were gastroparesis (my stomach not emptying right) and ascites....not the cause of those issues ....the cancer. It finally does show up along with mets to the lower lobes of my lungs (that's new) Glad your Mom is doing okay and so nice to hear from you. Dearest Sheri! I have Cytoxan every 2 weeks and all the clinical trial shots in between. I feel beat up tonight. Knocks me on my butt. I'm having inner ear problems too. Don't know if it's related to chemo or not. Always something and always having so much fun......NOT! Amazing you have been able to tolerate Halaven for so long. Still staying stable? Hope so. Hugs kid! Cathy
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Thank you
I was wondering if age affects things. My mom is 67. And anyone with spread to liver. They are saying that my mother liver is not functioning properly and is suspected that it could have spread to the liver. Or it could be liver cirrhosis. Today they are going to take a specimen from the fluid they are draining.
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Johnny, I think it has more to do with the person's physical condition at the time of diagnosis than age. I'm sure the older you are doesn't help but your Mom is just 3 yrs. older than me. Sorry that the hits just keep on comin! It's a lot to wrap your mind around. HUGS, Cathy
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Well, I started my 17th cycle of Halaven. I’ve been on this chemo since 7/20/17, so 11 months. Today my tumor marker went up 32 points - I’m not a happy camper. We will do this one more 3 week cycle and reassess & maybe do a scan, although who knows what that will show! Disappointed but not panicking yet. My chemo choices are dwindling and none are “easy” that I have left, which includes Doxil, CMF, Taxotere, AC (since I haven’t had the lifetime yet), and Afinitor. I have had
- AC, Taxol - first diagnosis in 2007
For Stage IV, diagnosed in Jan 2014 (belly mets officially diagnosed in May 2014)
-Faslodex
-Abraxane
-Gemzar and carboplatin
-Xeloda
- Ibrance with Letrozole
- Ibrance with Faslodex
- Halaven
I’m exhausted. Any thoughts as my next great chemo treatment?
Thanks for letting me pick your brain. 💕
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