peritoneal carcinomatosis
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Cathy, you are such an inspiration! Yes, it has been very quiet on a number of threads. Not sure what’s up. I’ve been dealing with work at home and chaos at my job. Looking forward to some slow weeks over the holidays.
I’m so glad to hear you have rallied somewhat (but not the unpleasant effects from increasing your food intake). Know that I’m thinking of you and sending a big virtual hug from Canada.
Pat.
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Cathy I agree with Pat you have been an inspiration to me since I joined this thread in July. The way you maintain your wonderful sense of humor is amazing and helps remind me to try to do the same. I’m glad you are having a bit of a rally and vey much hope for you to have some quality time ahead.
Pat I hope you can get some calmer time over the holidays
I just got out of the hospital today after being admitted Saturday for urgent surgery to replace my feeding tube which clogged and developed a leak in the drainage tube. I’m doing OK just a bit achy and groggy. My doctor was able to scope the area when he put in the new tube and said my blockage is still there though maybe a little looser,
It has been very quiet on our thread My thoughts are with everyone.
Barb
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Hi ladies, I think there’s a few of us who have been just to sick to post. I know I have. Add depression with it. I can no longer walk. Can’t taste either. Always battling the big c. Hubby has to give me enemas. No more dignity. Still battling lymphadema. I know you ladies have a lot going on to. I guess it’s safe to say we are all a mess. I pray that you all have a blessed day today.
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hi everyone. I agree Dianarose, i think sicknesses on top of Christmas has led to a very quiet board. I am sorry to hear how badly you are doing Dianarose, cancer definitely takes away any dignity we may have had left. Cathy, happy to hear you are having a bit of a rally and that hospice is going well.Barb, that is no good about the feeding tube and surgery. Ut just seems none of us can get a break at the moment. I have been laid up with terrible abdominal pain, think the ascites is on its way back again. Hopefully it settles down real soon as i have to still finish my Christmas shopping and the kids start school holidays next week so i want to b able to have some fun with them. Keep your chins up ladies and i hope we all have some better days ahead. xxxx Tanya
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Oh Dianarose I am so sorry for all you are going through. You have been so strong battling though so much over the past months. You deserve better times as does everyone in our group.
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Cathy
Today I put on my t-shirt which is from the 2006 Haight Ashbury street fair (yes I've kept it that long)and it made me think of you enjoying your “hippie" music. I am thinking of you and wishing you comfort and good times with your family and friends.
Barb
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Hi everyone
What a time to be feeling unwell. It seems to me that I have spent the last two months in and out of hospitals , with one scare after another. I now have three tubes sucking up fluid from my body and yep infection comes along with that: fun.
I am feeling so badly for all of you and wish I can do something to alleviate our struggles.
So I am lying in my bed and thinking of what is good in my life right now
My children have stepped up and are making Christmas prep a breeze. I am so happy
My husband is as steady as they come and he feeds me and looks after me
My friends understand when I have to cancel last minute plans on a fairly regular basis because of my new normal way of living
What else is there really for any of us? What can I be possibly be complaint about?
Absolutely nothing!
Take care
Marina
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hi all
I just wanted to send a huge hug and positive thoughts to all of you. I know many here have to struggle and I just wanted to send a note filled with love.
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Not that I'm complaining (again) but do I have to go to ER in one hospital and not be admitted but then go to my regular oncology appointment and end up in a bed on the Oncology unit? Yet another infection; urinary tract, stomach and lung. All at the same time. I'm on IV antibiotics so hopefully everything is under control.
I will be a good girl, keep a low profile and try to leave so I can be home forChristmas.
Diana Rose I am always thinking about you and hoping you got some relief from the leg fluid build up.
Love to you all
Marina
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Hi all - wanted to check in as it's been awhile. Thx, Barb, for the pm. I've just been too sick to respond on BCO. My mets had spread to my spine and I was going to do 15 radiation treatments. I was doing chemo (Navelbine/Herceptin) concurrently. Well, by the time I got through 2/3 of the radiation treatments, I was having terrible D. They gave me something to slow it down but it wouldn't go way. Then my appetite pretty much vanished and I was sick. Ended up in the ER and admitted to hospital due to critically low potassium. Hospital didn't check for infection and should have. All last week I have been getting IV potassium infusions daily, which take forever. Finally got on strong antibiotics last Wed - had UTI and intestinal infection. Skipped chemo last week and hopefully will again this next Wed. At this point, I'm weak and exhausted. Still trying to get my potassium to stay up. The big D is finally calming down. I have no energy. It sure takes a long time to gain strength back once you lost it. I ended up finishing 13 radiation treatments of the 15. I'm done - no more. That just screwed up my gut/intestines tremendously.
So, with all that said. I'm not ready for Christmas. It's OK though. My family understands and it will be a low key Christmas. I truly hope I'm on the road to recovery. Truly these past few weeks have sucked!
I am thinking of y'all even though I haven't posted. Wishing our struggles could go away as easily as they come. 💗
Merry Christmas to my belly mets sisters🎄
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hey everyone, i thought I should drop a post to say hi to everyone and as it is Christmas eve here in Australia, wish everyone the best Christmas they can have with family and friends and good food and laughter and joy. You really have had a terrible time of it southern, and hopefully u will be on the mend soon. Of course your family will understand and I'm sure r just happy to be with u regardless of anything. I have been hooked up to my new buddy, morphine driver, for over a week now. We r getting used to each other and he has joined me on my Christmas shopping trips this week without any incident haha. I'm just grateful to b able to be at home while having the driver, as my last palliative care team admitted me to hospital for everything. My new palliative care team wants to keep me at home if at all possible, so i can b with my family and especially my 9 and 10 yr old because they don't cope well when mummy isn't at home. Unfortunately looks like a drain is on the horizon for later this week. I have been bloated for a couple of weeks now but yesterday and last nite it really filled up and i now look like i am 9 months pregnant. Just want to get through Christmas day tomorrow then I'm good to go. I have all the school book shopping to look forward to once Christmas is over....it never ends haha. Anyway sorry for the massive rant, and merry Christmas to all of you beautiful, courageous and inspirational women, and enjoy time with family and friends xxxx
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I also want to send best wishes to all for the best Christmas that you can have in your current circumstances. SheriI'm glad that you posted and it sounds like the worst may be behind you and you can start healing. I agree, it is so frustrating that it takes so long to heal and recover strength. Aussiemumma I'm glad that your team is able to let you stay at home. Feel free to rant any time (though it didn't sound very “ranty" to me).
I've mostly recovered from my last surgery but still feel so tired most of the time. I'm temporarily off,chemo because they took me off Doxil due to my feet blistering so I thought I would be recovering my energy. My gastroenterologist mentioned something about me being anemic at the time of my last surgery so I'm wondering if that's what it is. Also I know I've been having problems keeping my thyroid levels stable. I was hoping to not have any medical appointments next week but I'm thinking I should probably call about getting my blood tested.
We are having a low key Christmas which fits my current state.
Merry Christmas to all.
Barb
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Hi all - checking in to say I am SLOWLY recovering. Found out this week that I had a really bad UTI, but no intestinal infection. So all that terrible D was due to radiation side effects. Seriously, so bad. Worse than any chemo I’ve had. Truly hard to believe that wasn’t an infection. My potassium is finally back to normal and I did get Herceptin infusion yesterday. No Navelbine as I’m still too weak for chemo.
How is everyone else? Barb, I didn’t realize you had a surgery. Hope your body is recovering with no chemo. Aussiemumma, hope you got your stomach drained. Having ascites is so miserable! Cathy, I’m hoping you are resting and enjoying family time. Marina, ugh - I hope you are home now and enjoying family time too. Hang in there, DR, Pat, Jane, and Enerva. 💕💕💕
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Hi EveryoneI was in the hospital for five days with an infection in my urinary tract, stomach and lining of the lung. They tapped my lungs and stomach. They sent me home last Friday with oxygen. I like the oxygen with how it makes me feel but I don't want to become dependent on it.
Considering everything , I had a decent Christmas because Of my amazing kids and husband. They handled everything and I j ust sat there like a queeen for three days. I feel guilty but then I remind myself how many years I did the bulk of the work. It's nice to know that they paid attention. My daughter' turkey was better than mine. I'm very proud and grateful for my family. It makes this horrible disease a bit easier to bear. I hope Everyone is feeling stronger going into the new year.
Marina
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hey lovely ladies, hope everyone is having a wonderful Christmas and lead up to another new year we r all still here together with each other and family and friends. I went into hospital Friday and had my drain tube inserted and they drained off 3 liters in 15mins. Closed off the tube and i got to go home. The first thing i did was have a beautiful ham off the bone bread roll, and enjoyed every bite haha. The blue care nurse has come to visit the last two morning and drained a further 5 liters off. During today's drain, the last couple of hundred mls were slow so i think we have most of it now. 8 litres so far, and i think maybe half to 1 liter tomorrow and i will be fluid free and they will be taking the tube out, which will be great. I feel so much better now and am loving being able to enjoy food again. It is school holidays here so my 2 little ones are happy cause once i get the tube out tomorrow we can start to enjoy our school holidays together and head off to the beach. We have a sand castle building contest to have hahaha. Southern, very sorry to hear about your uti. I agree, i have never heard of such side effects from radiation and i am glad to hear u r slowly getting on the mend. Marina, you have certainly been through the wringer, but i loved seeing your photos of Christmas with the family and so glad they spoilt u and took over. I bet your daughter was proud as that u as her mum loved her Turkey. No matter how old they r our kids love when we give them praise. I hope everyone else is hanging in there and just taking it one day at a time. I am so grateful to have found you beautiful souls, to help me through what i know is coming, with grace and humour. Take care xxxxTanya
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Marina, love the pics and so glad you got to enjoy Christmas with your family at home. The food looks delicious - they did a great job and I know they loved spoiling you!
Tanya, I can’t believe you have had 8 liters drained in a few days. That is a lot! I was miserable when I had 2 liters drained. I can only imagine how good that felt to have the fluid gone! Now it’s time to enjoy your break with your kiddos.
I’m feeling a bit better today but was so tired. I had to get up and take pain pills in the middle of the night as I had such back pain. I had a hard time going back to sleep for awhile and then ended up sleeping 1/2 the day away. It’s OK as we had no plans and I’m just trying to rest and get back to where I was before radiation. The chemo nurse told me on Friday that it may take up to a month to be back to where I was before radiation, given my potassium and terrible D issues. Really made for a miserable Christmas this year as I could barely keep my head up.
I say “on to 2019!”, gals.
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So disheartened to hear that Dianarose has entered hospice. May she be pain free during this phase of her journey. Has anyone heard anything from Cathy?
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I hadn't realized Dianarose was now in hospice. Thank you for letting us know Masonsmawmaw. My thoughts and prayers are with her.
I've also been very worried about Cathy. She has not been on the site since early December. I hope she is getting some relief from symptoms and spending time with her family.
There are no words really. I hate freaking cancer! Pat
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I am completely devastated that Dianarose has moved to hospice. We have texted each other almost daily for the past 1 1/2 years and I feel like she is a member of my family. I was in tears today when she told me, even though I knew that news was coming. I love so many things about her but mostly her BIG heart!! She is truly a special woman. Like Pat said, I hate freaking cancer!! I've been worried about Cathy too. She hasn't logged in for a month. Sending prayers and hugs for all.
So, I'm finally starting to turn the corner and feeling a bit better from radiation side effects. I was supposed to start chemo up again last Friday but my husband's employer changed insurance plans which has delayed everything. I hate insurance too! I've been off chemo for almost a month now since I've been so sick. My cancer is probably running rampant. Feel I can't win right now. Oh, and I still have back pain, after doing the radiation from hell.
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Oh geez. I am so sorry that you are now dealing with insurance issues. In some ways I don’t know which system is best. Here I would not be off treatment due to insurance but, and it’s a big but, I don’t have access to many clinical trials and treatments that my neighbors to the south have. It’s just so wrong that we are all forced to fight for the treatments we need. Today the frustration is just a bit much.
Sending hugs from Canada and wishing things would improve for everyone in early 2019.
Pat
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I am also so sad to hear about Dianarose’s move to hospice and very worried about Cathy.
Tomorrow is my 2nd opinion appointment at UCSF. I’m anxious to hear their recommendations and and any trial options.
Barb
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Oh no! I am so sorry to hear about Diana Rose entering hospice. I felt she really understood me since we both wear nephrostomy tubes. I hope Everyone is feeling a little better now that the holidays are behind us. I am in limbo right now just getting over an infection.
It has been a rough couple of months. Has anyone here been put on oxygen and later you recovered? I am on oxygen now since my lungs have fluid around them. My peritoneal drain however was removed yesterday. The ultra sound found no fluid; hurrah!
Hopefully, once I get back on Ibrance my lung issues will be resolved. My husband is in Florida putting up our house for sale; another dream that is not to be. We wanted to be snowbirds but my treatments prevent me from long journeys.
I'm feeling a little down today.
Love to you all
Marina
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Marina, I so sorry to hear that you are dealing with so many issues as well. With regards to oxygen, I was not on oxygen but knew someone who was due to pleural effusion. Once the effusion dried up (she had a PleurX catheter inserted as did I) she no longer needed the oxygen. Hopefully treatment will get things back on an even keel.
It's a shame about the house. Having someplace sunny to escape to seems so lovely right at the moment with our dreary west coast January. But I certainly understand the challenges of travel with all of our issues and treatments so have been focused on making my house as comfortable and cosy as possible so that I can enjoy throughout the year.
Sending hugs to everyone. Pat
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Marina, yes, it has been such a rough few months! Exciting that your stomach drain was removed with no more fluid. I've never been on oxygen, so I don't have that experience to share.
Barb, are you getting a 2nd opinion on your next chemo? Have you discussed removing your feeding tube yet or maybe that's what your appointment is about too.
Waving hello to everyone. Still waiting for my chemo to be approved. Glad insurance knows more than my MO - NOT!! Makes me mad every time I think about my continued delay....
Please keep posting. It helps me so much when each of you share your life and experiences and now there seems to be so few of us here. 💗
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so sorry to hear about diana rose and i really hope Cathy is going okay and both are making the most of time with family. Marina, i haven't had oxygen so can't help out there, but hope things start to settle down for u soon. We have booked our new Zealand road trip, just hubby and myself and we leave on 28th January for 19 days. I am so excited. My drain tube is still in and all up since 28th December have had 12 liters drained off. They want me to drain every few days, and i seem to b getting 1.5 to 2l each few days , and i don't even feel like there is anything there. Oh well just want to make sure before we leave i have no fluid left. Thankfully Australia has an agreement with new Zealand so if i need medical attention while over there i can get it for free under our medicare system. I would hate to have to wait for insurance companies to approve treatment like u do overseas, we have no such worries here, i just get whatever is needed by my doctor. Hope everyone keeps on staying strong and enjoys their new year. xxxxxx Tanya
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Hi friends,
I wonder if any of you have cancer which doesn't respond to chemo?
I am now a year since diagnosis and the past month I have been feeling some pain which I cant explain it seems to happen at night. Like I wake up with this pain in my stomach ,I turn myself back and forth in bed till it goes away. My last ct scan was clear. It said no new disease I was so happy. My next one is next week on Jan 17th 2019.
I had a bad cold which started dec 18th so I spend xmast in bed feeling really bad. I have been monitoring the stomach but I dont see any fluid build up yet.
The only treatment I have is letrozole and this year I was ok I could even say as normal as I could feel. Now this past month I had this issue where I cant sleep this stomach pain is in my mind, is hard trying to figure it out , at some point the pain was underneath my right rib so I think is my liver also.
I am sorry to heard all of the issues you ladies are dealing with. I hope this year is a better one for all of us.
I cant stop wondering what is next.
I keep taking a natural medicine which helped me a lot and I hope the ct scan will still show clear again.
Sending you all a big hug
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hey everyone, it has been so very quiet on here as of late, no one seems to b posting at all. I hope everyone is still hanging in there and not experiencing too many difficulties in this new year. My husband and i are heading off to new Zealand in 1 weeks time, for almost 3 weeks. Looking forward to it so much. We have a campervan booked that is bright purple hahaha, gonna turn some heads i think. Have some amazing things planned like white water rafting and doing a glacier hike. This is the last overseas trip i will be able to take so definitely going to make the most of it. Take care everyone and if u can say hello, just so we can all know each other are okay.
xxxxxx Tanya
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Hi all -
Enerva, thanks for the update. Sorry about the pain you have been feeling. Glad you had a scan this week as hopefully it will provide answers. I wasn’t sure how to answer your chemo question. I’ve been on quite a few chemos and some have worked for me for a while and some chemos never worked. The ones that have worked the best for me were Xeloda and Halaven, but everyone is different.
Tanya, so happy you are going on your 3 week trip. It sounds like you are feeling up to it, which is fantastic.
I started back on chemo (Navelbine) last Friday. Today I will be getting Navelbine and Herceptin. I was off chemo for almost a month and my TMs jumped dramatically. I’m really praying the chemo kicks in again now that I’m back on it. It’s so frustrating. I took a chemo break as I was so sick from the radiation side effects and my cancer ran rampant during that so-called “break.” Still working on getting back some energy. I’m still just weak and exhausted. Feeling better for sure but not up to doing much of anything. In fact, I haven’t left the house since last Friday. Thankful I have a nice, warm home with a DH that understands my limitations right now.
Please post an update if you are able. I miss seeing everyone here. We have certainly been having tough times lately.
Hugs to all! 💕💕💕
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Aussiemuma hope you have a safe trip. It seems all is well planned and you do deserve a break.
Southersurvivor, thanks a lot
In my case I am only on letrozole, my cancer does no respond to chemo. It feeds from estrogen 91% and progesterone hormone 10%
My ct scan was done yesterday and it went ok
I will have the results on Jan 29th. My stomach is still in pain, but not fluid buildup yet. I am also still coming out of a bad cold so I am hopping g is just the flue that is causing my issues.
I hope all of you feel better soon.
Sending everyone hugs
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Greetings to all, it’s good to start seeing some posts on the thread. Tanya I hope you have a wonderful trip, it sounds like you have amazing plans. Sheri I’m glad you are able to get back on treatment and hope for less side effects. Energy I hope you have great scans. What natural medicine are you taking that I see helping you a lot?
My 2nd opinion appointment was interesting but didn’t result in any trial options though the doctor told me she’d really like to get me on one. Two reasons, I’ve had too many treatments for some, even though just Ibrance/faslocex and Doxil, and the others involve oral medication which I can’t do because of my blockage and feeding tube. Her chemo recommendedation was Halaven, with my oncologist supports so I started treatment yesterday after being off for over 6 weeks. The goal and hope is for the chemo to kill the cancer causing the blockage which will open options for oral treatment in the future. It’s a bit scary and makes my feeding tube need not just a lifestyle no eating issue but a limitation for future treatments.
I asked about surgical options but the doctors don’t feel comfortable because the cancer is in my stomach lining and can’t all be seen which would make it a risk that the cancer would simply block the new outlet and in the meantime I’d have to be off treatment which creates other risks.
The good thing is that my foot blisters are almost totally healed so I can start taking walks, doing my amateur bird watching and other activities that help uplift my spirits and calm my mind. I’m hoping and meditating on good results from the Halaven, also hoping for not getting debilitating side effects like I did with the Doxil.
That’s my update. Love and hugs 🤗
Barb
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