peritoneal carcinomatosis
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Cathy, I’m so sorry. I know we will all get to this place but it doesn’t make it any easier. So unfair. I don’t know what more I can say. Sending you a big hug from Canada. It sounds like you will be well taken care of and, once the effects of treatment subside, you can on the “me” time you deserve. I concur with Dianarose. You have been a tremendous support for everyone here. Thank you.
Hugs. Pat.
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Cathy, I am very sad to read this today. I just wish having these belly mets weren’t so damn hard. As always, you are the “half glass full” kind of woman, which is just one of the characteristics I love about you. I have heard many good stories about how hospice people were so kind and willing to do what it takes to keep their patients comfortable. I agree with you - you want a great view and have room to visit with the people you love.
We will all still look forward to your posts. You are so encouraging and inspiring to all of us. Take care and sending you hugs today!
❤️ Sheri
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Hello All. Feeling a little stronger today. I've decided I'm a walking "petrie dish." Since lobular doesn't show up on scans, my doc doesn't really know exactly where the cancer is....he can guess from symptoms...but no tumor to show the way. So whatever happens as I'm off treatment is a complete crapshoot. I find all this very interesting! I continue to hope medical people learn something new from what those of us with peritoneal spread from breast cancer are going through. I think we are about the 1st generation that they have been very aware with this type of cancer spread. Apparently my doc will stay in touch with hospice so he will be kept updated. Thank you everyone...I'm feeling the hugs and love. Still here. Makes me think of Stephanie. I'm pretty sure she beat the odds and stayed around on hospice a lot longer than medical people thought she would. Just want to stay comfortable. HUGS, Cathy
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Cathy- found out today that when this treatment isn’t helping anymore the next step is hospice for me too. Didn’t make my day. I am such a physical mess right now I wasn’t all that surprised. One good thing is my new lenses with the prisms came in and they are working. No double vision. It’s amazing after 8 weeks of barely seeing. My close up vision is better then 20/20.
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I have not been posting much since my diagnosis of peritoneal Mets but have been reading and following all your posts regularly. It is heartbreaking to read how much you all are suffering. I can now add myself to the list. I returned from an amazing Mediterranean cruise with a lot of pain, shortness of breath and weakness.
I went to see my palliative doctor and she diagnosed me with pneumonia and prescribed antibiotics and a puffer. Fast forward five days. I had my second CT scan and saw my oncologist today. My cancer has progressed to the lining of my lungs and maybe bones. To my surprise she admitted me to the hospital and here I sit.
I need to be drained from my lungs and my peritoneum. I know many of you have experienced this but I am overwhelmed and nervous. I was on Xeloda since February and now we are exploring alternatives. I have Lobular ER + cancer.
What has worked for you?
Thank you for this group. It gives me hope in spite of the setbacks we all have.
Marina
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Hi Marina - I’m so very sorry you have had progression and are now in the hospital. I have lobular ER+ too. It’s amazing how quickly things can turn. I’ve just experienced the quickness of progression and it sucks. (I’ll go into more detail of that tomorrow as it’s very late.) I wanted to tell you that besides Xeloda, my next longest time without progression was when I was on Halaven. (Progression-free for 1 year.) I really did quite well regarding side effects, besides the crappy one of hair “thinning” by about 70%. I had 2-3 down days each cycle but then felt pretty good. Cycle was 2 weeks on, 1 week off. Just my experience, others have been different. Also, paracentesis for ascites build-up in stomach wasn’t bad at all and you will feel so much better. It’s hard when you don’t know what to expect. Website is messing up - so slow. I’ll write more tomorrow.
💕 Sheri
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Hi Marina,
I am also sorry to hear about your progression but don’t give up hope. Your oncologist is probably concerned about the shortness of breath but this can be remedied, for the short term, by a thoracentesis. I was diagnosed as stage IV due to fluid in my right lung. At it’s worst I had about 3 litres of fluid drained off but it was such a relief. Ultimately they inserted a PleurX Catheter so that home care nurses could drain me twice a week keeping the fluid under control until things dried up. Now I have small pockets of fluid trapped in my lung but it doesn’t cause any problems.
I hope they put a plan in place and get you out of the hospital very soon. Pat.
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Cathy I was so sad to read your news and at the same time admiring of your attitude and approach to it. I wish you much time to be side effect free and good to enjoy time with your family and friends also lots of 60’ s music. You have been an inspiration to me in the time I have been in this discussion group.
Dianarose I am glad to hear that you can see with the new lenses and that this is the first of many improvements in your physical well being.
Marina I am sorry to hear of your progression. I hope the drainage is pain free and provides quick improvement.
Pat that is good information to know about having the ability for regular weekly draining, It sounds like a good approach. I’m glad you are doing well.
Sheri I talked with a new nutritionist with the feeding tube supplier and she is working with me to get me even more time off the feeding tube, looks like 8 hours. I am so grateful to you for letting me know from your experience that this is possible.
Do all of us on this thread have lobular? I am also lobular, ER positive. I am in the chair getting my 3rd Doxil infusion. They are reducing the dose more to try to lessen the chance of more blistering and rashes.
Love to all.
Barb0 -
Liwi-I am lobular and Er positive also. It’s the nasty beast. When I was first diagnosed I was bout. It changed or maybe was always there and they missed it.
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Cathy, how cruel this cancer is!! Why oh why are beautiful people like you hit so hard.... I could not stop the tears when I read your post. Your amazing positive attitude and love of life shall keep you ‘on the right side of the grass’ for years to come. Just like Stephanie! We all love you and share our strength with you, always!
Dianarose - wonderful that you can see again! I had to stop taking the steroids as they made me bonkers...
Marina - so very sorry that your cancer has progressed - not fair! I hope you are feeling more relief after the drainage.
Barb - I am Lobular, ER+ The MO who treated me when I had the primary BC warned me then that Lobular BC has a nasty way of ‘sneaking’ to the stomach/peritoneal area......how right he was!!!
Pat, Sheri and Barb - BIG hugs!!!
My MO has taken me off my Chemo (Capecitabine) until Christmas as he wants to reduce the toxicity in my system and give my poor damaged skin a chance to heal. I am so very happy to have a break and look forward to improved QoL - less fatigue shall be nice.
Sending sunshine and warmth to my lovely belly mets sisters,
Much love always, Jane xox
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Hi again! Marina. I'm just so sorry you are experiencing progression. Hoping treatment starts working quickly so you can get it under control. Wrapping you in a big hug. Dianarose, I've found it's almost a relief to stop treatment. I was to the point where I felt like I wasn't getting anywhere. No treatment was buying me time, and for the most part, just making me miserable. My mood would go up with every tumor marker and down with every bad symptom. So glad you got your glasses!! Ah Jane, you made me tear up. I can't tell you how much I wish I was in Australia catching some rays of sunshine with you. Barb, so glad I found a new friend in the Bay area. It's such a special place to live. You're the best and you get my taste in music. Rock on, girl! Out of the blue I developed weird pockets or lumps in my right side between my liver and my waist line. A whole bunch of them. I called hospice and since I'm not officially signed up yet, they wouldn't help me. My Doc said I could call anytime, so I did. Since I'm not in pain he suspects they are pockets of ascites fluid. Sheri, I know you mentioned an experience with them, but I have never had them before. My whole side feels lumpy. I would imagine if it was something worse they wouldn't treat it anyway since I'm on hospice. I had to call the Doc because my hubby insisted. They need to accept the fact that I am going to get worse and it doesn't get treated. Hospice just helps make me comfortable. I know when my Mom had a stroke that took away her ability to swallow, the nursing home she was in was just letting her choke to death. I got so mad I called an ambulance. I got lectured about it but I never regretted it. She lived another 1 and 1/2 yrs. I can see my daughter and hubby doing the same for me. Different with cancer though....once it gets started, it's gonna want to finish. I will let you know when I get more info on the hospice program. I'm anxious to get it started. LOVE YOU ALL, Cathy
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hi everyone. It's been a while since i posted but i have been following how everyone is going. So sorry to hear of the problems so many of us are going through right now, especially you Cathy. I am no longer on any form of treatment as they have run out of anything that works. I am still seeing palliative care of course and will just go in for a drain as required. My last drain was last month. I am starting a trial on Monday for cbd oil they are doing through palliative care. Hopefully it will relieve my pain and reduce the methadone and morphine i am on and some smaller studies have seen promising results in slowing down the cancer growth so that would b a wonderful bonus. They have said we r talking months now, not years, but next week i see my oldest son graduate high school so i am absolutely stoked about that. Going to make the most of the upcoming summer school holidays to spend heaps of time at the beach, swimming and building sand castles with my 2 little ones. Heading off to New Zealand in January for 1 last holiday. The doctors said they will see how the fluid goes but worst case will do a drain a few days before I leave so i will be good to go. My second oldest is due in march with my grandson and she wants me at the birth so i will be making sure i make that date. When i think about how they said less than 12 months 2 years ago, i have been so lucky to get this extra time. I so hope everyone here continues to have success with their treatments and find that amazing balance between qol and treatment.
Barb- i too am lobular ER+ so it seems to be a common theme amongst us in this group.
Jane- from a fellow aussie, enjoy your summer break from treatment and hopefully when it starts up again you will b feeling better with it all.
Hugs and best wishes to you all. U r amazing women who help cheer me up with your courage and humor.
Xxx Tanya
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Posting to let everyone know I am thinking of you all and sending good wishes .
Bar
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Met my nurse and my social worker today. Both are wonderful empathetic women. I scored! Nurse is getting permission for me to have a drain put in my gut to relieve the ascites. Can't wait...it's making me really miserable. Love you all! Cathy
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Hi all - wow, there is a lot going on with us.
Cathy - I hope you can get the drain as that would provide relief without leaving the house! Glad you got great nurses too - it makes such a difference.
Welcome back, Tanya. Sorry to hear you are off treatment but you sound like you have some wonderful upcoming plans for your summer.
Waving hello to everyone. I just wanted to give you a quick update to say my backache I’ve been having the last several week is apparently being caused by mets to the spine, per the MRI I just had done. Diagnosis was confirmed by a neurosurgeon last week. Yep, not great news. I meet with RO on Wed morning before my chemo to discuss the treatment plan. I’m on Navelbine/Herceptin now and per another woman on BCO, her radiation is being done concurrently with Navelbine. I guess I’ll find out more on Wed as to the detail plan and length of radiation treatment. Has anybody had this done before? Also, my TMs went up last week, so we will have to see what the next TM lab says. It was a disappointing week last week for sure. Ugh - it’s never easy!
Wishing the very best, as always, for each of you. I’ll keep you updated later this week. 💗
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Oh Sheri, I am so sorry and sad about the mets in your spine. What a crappy disease this is and so devious in finding new ways to attack. Somehow our medicine needs to find a way to get smarter than the cancer. I haven’t had bone radiation but have heard of good success from others who’ve had treatment.
Cathy that is great news about your nurse and social worker. That can make such a difference. I hope you can get your drain approved quickly so you can be comfortable and enjoy your hippie music!
Tanya your vacation plans sound wonderful, enjoy! I hope you get good results from your cbd oil trial. I’ve been reading a bit about some of the potential effects on slowing cancer growth but haven’t gotten too far yet into looking into trying it. I am using a cream for some sore spots on my back and shoulder and think it is helping.
Hello to all
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Barb0 -
I took a good digger last night trying to get up the stairs to get in the house. The stairs are high. My knee just gave out and down I went. Butt hit hard on the step. I was in so much pain. Tailbone area really is hurting this morning. I don’t want to leave the house because I know I have thes dam steps to deal with.
I hope everyone is having a good day so far. Every day we get is a blessing 💕
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Hello Everyone! Oh Dianarose, I'm so sorry for your fall. My tailbone is feeling your pain. That's just the worst. Take it easy, girl!! Sheri, I'm so sorry about the bone mets. I had radiation to my tailbone area back in 2012. Couldn't believe the ache it caused but the radiation really nailed it. I felt so much better after it was done. Hey Tanya. Glad you are keeping up the good attitude..you have so much to look forward to. Keep on fighting! Well the hits just keep on coming. I got so full with ascites again that I stopped eating. I had no room to put any food and then when I drank anything, if I sneezed or coughed, up it came. Told the social worker yesterday. My nurse was on the phone with me 2 hours later. She tried to get me in outpatient for a paracentesis but no one could fit me in. She told me to go to the E.R. because she was afraid I would be so bad next Tuesday that the doc might refuse to give me the drain, which would be my death sentence. (Finally scheduled for the drain next Tuesday afternoon.) E.R. was wonderful. Only waited for 50 minutes and then they took me back. Got fluids because I was so dehydrated and Zofran to help me quit having the feeling to cough and throw up. They then removed 5 liters of fluid.....that's after only 2 weeks. This ascites is killing me!! They tested ascites for infection...no infection but, of course, full of cancer cells. Henceforth they will be called the "asshole" cancer cells. Eating today to build myself back up. I'm down another 8 lbs already. If I can keep the ascites down to a dull roar, that will buy me some time and some QOL. Love you all so much. You have made my life so much better! Cathy
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Thanks all for your caring words.
Dianarose - I hate that you fell. It makes me cringe thinking about it. You don’t need any more pain!
Cathy - glad you got the ER to drain the ascites. You certainly couldn’t have waited much longer. Hoping you will feel much better when you can drain at home.
Next up this week for me is fluids on Monday and then a full body bone scan on Wednesday. I will need help with Thanksgiving dinner. It’s too much for me with all this going on!
Enjoy the upcoming weekend as much as possible. We have to live each day the best we can. Hugs to all!
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I saw my gastroenterologist today who told us how to test to see if my pyloris sphincter has loosened/opened up a bit to allow food to go from my stomach to intestine. It’s pretty straightforward, just close off my drain tube for 4 hours, the unplug it and see how much fluid drains into the bag, hoping for less than 100 ml. If less, good sign and go longer. The funny thing is, I’m scared to do it. I’m not sure if I don’t want bad news if it’s a bad result, or afraid to get that awful acid feeling in my stomach if too much accumulates. I’ll probably pick a time to try over the weekend.
He wasn’t very optimistic about it working because I haven’t noticed any decrease in my drainage fluid and he’s concerned that I may also have gastroparesis. I think it’s also his personality as I’ve noticed he tends to present more the worst case potential outcomes maybe not wanting to create too high expectations or it’s just the way he is.
Cathy I’m so glad you got drained and hope there is minimal accumulation between now and Tuesday,
Dianarose you so deserve some good days ahead with no new issues. Is there a way to modify your steps so you can manage them safely?
Sheri I hope you get lots of help and can just relax and enjoy Thanksgiving dinner.
We decided to go away to Carmel on the coast Wednesday and Thursday for my husband’s birthday and Thanksgiving. It makes no sense to cook since I can’t eat. It will also get me to my beloved ocean air. I’ll especially appreciate it now as we have had dangerously bad air quality from the fire. Though I feel bad to complain about it when I compare to all the people from Paradise CA who lost everything.
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Well it seems we r all going through the wringer at the moment. Liwi, i hope it works out for you with your test this weekend. It's always scary not knowing how things will turn out but better to know than keep doing your head un wondering. Cathy, so glad u got a drain and hopefully now you can enjoy eating again and the nasty ascites stays away for a good amount of time. Diana, that is terrible that u fell. I feel your pain, and hope you r feeling better. Southern, good luck with your scans. I hope it brings you some good news as we all deserve some good news once in a while.
Have had a wonderful week as my first born son graduated from high school. Got all dolled up for photos at his formal. He looked so much like his dad (who passed away in a car accident 9 years ago). When i was first diagnosed with stage 4 i didn't think i was going to make it to see him graduate, but thanks to some successful treatments i made it. It was such an emotional week of happiness at seeing him finish school, but also realizing i wont get to see my 2 little ones graduate from primary school, let alone high school. I know i will always be with them in their hearts so in a way, i will see all the wonderful things they have ahead of them. Sorry, dont mean to be a buzzkill, just been an emotional week.
I hope everyone has had a better few days and a great week ahead. Hugs to you all and thinking of you all xxx
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My Lovely Belly Mets Sisters
Just wanted to send love and strength to everyone. I hope Thanksgiving was beautiful for those who celebrated. What a wonderful and special time.
Tanya - welcome back and GOOD FOR YOU!!! Our lives are an emotional roller coaster so never any need to apologise.
QoL is our mantra!! HUGE hugs and good days ahead for all!!
Love wrapped up in bundles of warmth and sunshine,
Jane xoxo
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Thanks for your good wishes Jane.
No apologies Tanya. It is so important that we have place where we can express our valid feelings and helpful to know others share things we feel.
I’m back from our trip to Carmel by the Sea. We were lucky with the weather as it rained at night but was clear and beautiful during the days we were there. My blisters are still really painful and I couldn’t do much walking so we did drives along the coast. Wednesday night we saw a fun local production of Mama Mia which was fun and funny.
Love and hugs to all my belly mets sisters.
Barb
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Been up since four. This stinks! Had an upset stomach. Taking some Tums trying to figure out what to do with myself.
Has anyone ever retained so much water that their leg just blew up three times the size. They have me on water pills but they are not working. I can’t even lift that leg and it’s like a block of ice. They did an ultrasound to rule out clots and sent me home again to be miserable. I’m frustrated.
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Oh, Dianarose, that sounds miserable! Did you get help yet? I get on about every 3 days or so. Don't always feel good enough to post. I am definitely going downhill. The drain is helping but it doesn't take much to get my system off. Very tired all the time. Just hunkered down enjoying family. HUGS and LOVE TO ALL! Cathy
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Sorry to hear so many of us continue to struggle. I have been thinking of each of you and thank you for your updates. I completely get that we would love to post but at times are just not up to it.
My latest update is my bone scan came back showing mets in my spine, which we already knew, but also mets in my 1st rib area. First rib is apparently high near collarbone and goes to the back. Not low where I think our rib cage is. Anyway, I've already started radiation on my spine on Monday but want to do radiation of the first rib too, so waiting for insurance approval for that. Wish they would have waited until that scan came back, as I'm sure now radiation will be longer than the anticipated 3 weeks.
This afternoon I'm also going to the dentist as I have a major toothache. Not what I needed but it has to be taken care of as I'm miserable.
I had chemo (Navelbine/Herceptin) yesterday, so this is definitely not my best week.
Dianarose, Cathy, Barb, Jane, Pat, Tanya, and Marina - hugs to each of you. Everyone is in my thoughts and prayers.
❤️ Sheri
PS. Barb - did you test your gastric outlet drain last weekend?
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Hi All,
I’m so sorry to hear about those struggling right now. It’s so unfair. I am also thinking of you and fervently wishing for better times for you ahead.
I’m doing well, just very busy between work, appointment and home (trying to get things back in order after upstairs renovations and desperately trying to tackle the enormous amount of “stuff” that we have - no one to look after this when I am gone so need to get on it now!). I had radiation to my spine a couple of weeks ago with great results. Feeling much better with far less pain. Sheri, there are times I wish I had access to all the latest and greatest trials and drugs but must admit, it’s a relief not having to worry about approvals for something like radiation. All very seamless here in Canada.
Sending hugs from the North.
Pat.
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so sorry to hear everyone's struggles at the moment. Dianarose, that sounds absolutely miserable and the fact they have just sent u home without any answers or relief is unbelievable. Cathy, I'm sorry you feel like you are starting to really go downhill, i hope you still get to enjoy many more good days with your family instead of bad. Sheri, hope the dentist sorted out your toothache, like you don't have enough to deal with at this time with your spine ect. Pat, good luck with the clearing out of stuff. I know it's one of those tedious jobs that must be done. I am doing okay, been having some bad abdominal pain this week and some bloating so expect the ascites is flaring up again and a drain will be around the corner. I finish my cbd oil trial next week and have found it to be fine, but not very effective for pain relief. Will be changing to my local palliative care team and have my first appointment next week. They are supposed to be one of the best palliative care professionals in qld, so we will see. I will send lots of hugs and sunshine from Queensland Australia to all of you and hope each of us has some better days ahead.
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I am so sorry to read of everyone’s struggles over the past weeks. Dianarose you have been through so much and I wish the doctors and hospitals could do more to help. Cathy I am sad to hear you feel you are going downhill and very much hope you can have many comfortable days with your family and friends. Tanya I hope they can help with your pain. Sheri that’s awful that you have a bad toothache on top of all else you are dealing with. Pat I so admire all you are doing, working and taking care of your house. Jane and Marina, I hope you are doing well.
I still haven’t done the test to see if my gastric system is working better. First I didn’t want anything to disrupt the holiday trip. Then last week was a busy activity week as we had tickets to a Warriors basketball game and to the theater in San Francisco. I think I’m also a bit scared that it would disrupt my stomach badly and cause problems. I really haven’t noticed much difference in the amount of drainage so I don’t think it’s likely that things are going down the right way, through the area that was blocked. Also my feet are still bothering me and I think I can only deal with one issue at a time right now. Hopefully next week I will pick a date and do it. I know my oncologist is anxious to see if there are positive results.
Love and good wishes
Barb
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Hello all! I know it's a busy time of year, but I hate to see so few posts. Keep up the group everyone! We need each other. Having a bit of a rally. Able to eat a little more but paying the consequences out the other end. LOL Hubby had to hose me down this morning. Can't win. Striving for January. Think I will make it. Weak as a kitten but sense of humor intact. What little dignity I have left is gone after this morning's hosing down and diaper! It's a party. Hospice isn't bad. People are great. I've fought long and hard so no regrets. LOVE YOU ALL! Cathy
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