peritoneal carcinomatosis
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Sheri, I don't see Navelbine (Vinorelbine) on your list. I would definitely try that. I don't know why it worked so well for me but it did. I can go back and do it again because I've never been on it until it quit working. I have built up some toxicity to it so I stay on it each time for as long as I can. I'm sorry about your tumor markers going up. It's such a gut sinking feeling, I know. Maybe it's a fluke and the next test will be better. Keep us posted! I'm so tired tonight. I got about 4 hrs sleep last night if that much. I was taking a nap today and my husband accidentally woke me up. I'm definitely bleary eyed! I have cancer cell shots tomorrow and echocardiogram. My left ventricle is apparently working at 50%. I wonder if that's from A/C back in the day or maybe a family issue. A couple people in my family plus parents had congestive heart failure issues. Once I was diagnosed stage IV I have managed to take most of this in stride. No point in worrying about something I probably can't fix. I also believe in not panicking until you're sure you have a reason. We live with enough stress. Love you all! Cathy
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Thanks, Cathy - I completely forgot about Navelbine for my list. I knew I was missing something tonight in this list but couldn’t remember it - thank you for the reminder! Definitely chemo brain.
I have talked to my MO in previous appointments about Navelbine, and he seemed receptive. Next appointment I will talk to my MO. I really love him but he takes a lot of vacation!
Would you recommend Afinitor? I’m heard so much negative about it being very hard and I don’t know what they would combine it with since my Guardant360 test said Aromasin or any other AIs would not work.
I know this trial is a lot of “work” but I’m glad you are plowing through. Is your left ventricle something that can be repaired through surgery? I’m not familiar with heart issues. I agree with not panicking unless you firmly know your predicament. I just like to be prepared for appointments with MO, which I really wasn’t today. My appointments do not last long, so I need to maximize my time.
Hope you are able to sleep better tonight!
❤️ Sheri
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Sheri, would you believe they would implant a defribillator? sp? So if I went into cardiac arrest it would shock it. Die from cancer or heart attack? Heart attack might be the best choice! I'm chuckling....not maudlin. I started at half dose Afinitor and worked up to 3/4 dose. Was on it total of 8 mos. with Letrozole. I had breakthrough at the half and was developing toxicity at 3/4 and spread. So I don't know what to tell you. There were times I felt pretty good but that would turn on a dime. I couldn't tolerate it at all back in 2003 at full dose. I don't know if you can take it without an A.I. Sounds like Navelbine might be your best bet. Not easy but you handled Halaven better than I did. Hair thinned on Navelbine as on Halaven.. I believe it's 2 weeks on and 1 week off. BY the way Afinitor was the medication recommended for me by Foundation One. I guess none of this is 100%. I wish you all the luck in the world! HUGS, Cathy
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Thanks, Cathy, for the details. I think Afinitor was recommended by my Guardant360 but their first recommendation of Ibrance & Faslodex was totally off the mark. I guess I’ll see what MO thinks next appointment.
I’m also mulling over getting a second opinion at Mayo in MN - it may be time for that. Lots of work to get up there, trying to work around chemo, and son getting ready to go off to college with lots of doctor appointments in July. Not sure when I can swing it. Ugh - having cancer is a full-time job
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anyone have any information on letrezol or ribociclib?
Also how do I get my mom on clinical trials?
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Johnny, is your Mom having trouble with the Xeloda? She hasn't been on it long enough to get a chance to work. I was on Navelbine for probably 6 weeks before it kicked in enough for me to start feeling better. Letrozole is an aromatase inhibitor. I just call them all anti-estrogens...that's the easiest way to describe what they do... cut back on the estrogen feeding the cancer cells. Ribociclib is a type of medication like Palbociclib (Ibrance). I don't know enough about what it does specifically. I was on the Ibrance/Letrozole combo for about 15 months. You could research it or maybe someone else here has better medical understanding of how they work. Hugs, Cathy
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I saw the cardiologist today. Thinks my left ventricle issue is directly related to the Adriamycin I was on back in 2003. I need to get my pulse down....he says my heart is having to work too hard. I'm always in the 98 range. I also need to get this extra fluid off me. Paracentesis tomorrow. Hope everyone is doing okay. Johnny, how are you and your Mom? Monday all day today!! LOL HUGS, Cathy
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Hi Cathy - it’s always something, isn’t it?? Is the paracentesis for fluid around the heart or for ascites? When you say you need to get your pulse down, how will you do that? I’m curious as my pulse has been high before (was 93 last time) and I had low blood pressure. They said I needed fluids, so they gave me some with chemo last week. Wasn’t sure what we can do ourselves, if anything, to lower the pulse rate. Seems like chemo really does a number on all our body parts! Let us know how you are tomorrow if you can. Hugs to all today - hang in there everyone!
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Hey Sheri, he's putting me on a drug called Metoprolol for blood pressure. It's a super low dose because my blood pressure is running low too. Crazy, huh? I'm supposed to take it at night. I need to get the fluid off because it causes the heart to work harder.....at 98 that's about 30% harder than it should have to work. I need to get the ascites off my gut. Hope that's what it is and they don't just tell me I'm fat. Oh the things we worry about!! LOL I'm already taking water pills and recently had high uric aced which can cause gout. My oncologist said something about Afinitor maybe becoming toxic for me. So I guess that's maybe what caused the uric acid problem. I don't know. I think the clinical trial would be a breeze if I didn't have all this side stuff going on. I'm so tired today! Think It's time for a nap. Hugs, Cathy
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Hello ladies. I have no clue what I wrote in my last post.
Anyways my mom has been on Xeolda for a week now. I don't think the symptoms are from that. I think it's from the cancer, I'm just surprised from walking around to not be able to is quite shocking. It's has been a roller coaster and these passed 2 months it has been a downward spiral. I don't know if my mom will get better. All it looks like is she is getting worse.
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Dear Johnny, I'm so very sorry. I truly hope your Mom can hold on long enough to have a chance for the treatment to work. I know how desperate you are feeling. I so wish there was something we could do or say to help. We can only be your sounding board. Wrapping you in a big hug.... Cathy
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Johnny, I’m so sorry too. Unfortunately, these chemos don’t work as quickly as we would like (or sometimes need them to) but they definitely can work. I will pray for strength and energy for your Mom. We are here for you to vent anytime. 💕
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Had paracentisis yesterday. I was really uncomfortable both from excess fluid and inflammation. I expected 2 liters but they got 4. Lost 8 lbs. I had gained 12 so the rest is my problem. LOL I have been so sore since the treatment. I've even been taking pain pills. It's that internally bruised feeling. I also figured out today that I was trying to go into an episode. Happily it never went full-blown. I'm sad I missed the local 4th of July parade. Perfect day for it too. Not too hot. My hubby is making me breakfast for dinner. Thank goodness for eggs I can always eat those. I finish my 2nd cycle of clinical trial tomorrow and start 3rd next week. I think then it goes to 2 weeks out of the month. Hope you are all having a fun day. Hugs, Cathy
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Hi I was diagnosed with metastasis to the peritoneum the end of February
I am now on abraxzene
I would like to know how others with this metastasis are doing and what treatments
have worked or failed
Thanks
Manza1
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Are you still doing okay
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Wow, Cathy - 4 liters is a lot of fluid! No wonder you are sore and I’m sure quite worn out. I am so glad you didn’t have a full episode. That is certainly the last thing you needed.
We have had a very low key 4th of July. It’s so hot here and I really just wasn’t up to going to see fireworks and the big crowd. My tolerance is not what it used to be. Cancer takes a lot away.
Manza - welcome, although sorry you had to join this “club.” Glad you have come here for support, as these ladies here are wonderful! Please know that what treatment works for one of us may not work for another, but we share our experiences to learn as much as we can. Treatments also may work for a time, and then the cancer figures out a way around it. That’s what happened when I was on Xeloda, which worked about 15 months for me. I’m currently on Halaven and have been on it for almost a year now. I hope the Abraxane is working for you.
Take care all - chemo again for me tomorrow.
💕 Sheri
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Thank you so much for your encouragement
Good luck tomorrow with your chemo
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Hi Manza. Glad you found us. I'm so sorry for your diagnosis. I've been fighting cancer spread to the peritoneum for at least 4 years now. Breast cancer since 2002. Navelbine worked the best for me but everyone is so different. I've just done every treatment that has been thrown at me.....chemo, anti-estrogens and radiation when necessary. This way I have no sense of "if only or what if." I know I have done everything possible to fight this nasty disease. Keep a good support system around you. My family has been amazing! I dance into treatments and go out of my way to stay positive. I refuse to have constant anxiety about something I can't change.....something that can happen to anyone. I refuse to spend the time I have left sad all the time. This is still my life cancer and all. Believe me the days I have a lot of pain, I'm not so cheery. I just let myself get through it and hope tomorrow will be better. HANG IN THERE! HUGS, Cathy
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Thank you sweet hearts, you ladies are definetly my hero's. Sorry I have been MIA we had the palliative care appointment today and then a appointment to removed the fluid. The palliative care team does not like the way my mom looks she is weak, slow, and sleeps way to much. We were sent to urgent care and there they check for fluid and none existed which I assume is good news? They then hooked a IV and my mom came back to life. They ran a blood test and found her sodium low, iron low, and a lot of other things show abnormal and low. Once the IV was installed for hydration my mom came back and looked better than before. So now we have a nurse coming in every day giving my mom hydration every day.
Also we rescheduled the oncologist appointment for earlier. And hopefully things work out.
I have also decided to pursue my moms wishes and try to become a police officer. If all is well here my brother will keep me posted if things change I will come back. And I'm sure the police academy will honour that. Hopefully I get the chance for my mom to see me in uniform. I'm sure she is proud but if I can accomplish this it will be paramount.
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So glad your Mom has gotten on palliative care. I know it must feel better to get that extra medical help for her. A police officer...that is amazing. I just wish you so much luck! Hugs, Cathy
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Johnny, what wonderful news, both that your mom has improved and that you have decided to pursue such a wonderful career. I know she is proud of you regardless (how could she not be).
Your mom’s situation is a good reminder that our blood can go wonky at any time. Typically with certain treatments the concern is low immunity but I had one treatment that, for whatever reason, completely wiped out my red blood cells leafy to anemia. Might have explained some shortness of breath!
Sending hugs and good wishes for your mom’s continued recovery.
Pat
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Good news, Johnny - dehydration can make you feel so poorly. I get extra IV fluids at chemo to help stay hydrated and it makes a difference!
Sadie - how are you feeling? Always glad to hear from you.
Hope everyone has a Good Friday! I need to get a few things done today before I crash from the steroids and chemo tonight, and then feel sick on Sat & Sunday. Ugh - being on a chemo this long makes me be able to map out my days that I will feel yuck!
Take care all!0 -
Hi Sheri,
I'm doing okay but am trying to figure out if Faslodex is failing me now. Things had improved with the gut pain and discomfort I was feeling in my right chest subsiding. However, while I was on a three week vacation to the British I started to experience a bit of discomfort again. Then, I unfortunately managed to come down with either a viral or bacterial infection at the end of the trip which turned into pneumonia. I was down for the count for a couple of weeks. It's been almost a month now but I'm still coughing, have SOB and my right side is quite tender. It makes me wonder if the cancer is on the move again as it was pain under my ribs that led to the discovery that I had peritoneal mets. Of course, Murphy's Law, I saw my MO three weeks ago and am not scheduled to see him again until September. I'll just have to play it by ear for now - I don't want to rush another scan as it seems difficult to detect progression in my case.
Sorry the chemo makes you feel so lousy. I feel fortunate that the treatments so far have been kind to me. Take care of yourself.
Pat
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Pat, sorry you're not feeling very well. Hope you don't have to wait until September if it seems to be getting worse. My daughter had pneumonia and it took her forever to feel better. Maybe you're having residual effects from the pneumonia. Feel better soon!! Sheri, thinking of you.. I'm always in awe of how long you have been on Halaven. It did help me but the side effects with the neuropathy were awful. Proud of you....feel better. I just have to say this has been a shitty week!! First the diagnosis of heart problems caused from chemo and a new medication I have to take, then the paracentisis that was painful as hell this time. It was like they were putting a big needle through inflammation. Then the achey gut after effect that lasted through Wednesday. I tried to have an episode on top of that. Got notified in my email that I had another test result. I got sent my tumor marker test I didn't know they had run. It's up 101 points. And then today I had the episode. I'm starting to feel better but glad this week is over. No dancing today!! lol HUGS Everyone! Cathy
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Cathy - you DID have a very rough week last week! I sure hope you are feeling better now. That paracentesis sounds terrible. I can’t understand why they can’t do a better job with the pain that comes with that procedure. Several on this thread in the past have said how painful it can be. Just UGH.
Sadie - I too wonder if you still are feeling the effects of pneumonia. That cough can take forever to go away. I wouldn’t hesitate to see your MO before September either, if you feel it’s warranted. I hope the Faslodex is still working for you, as that is definitely one to stay on if you can.
Waving hello to everyone. Halaven side effects were a bit rough this past week but will be starting my off week on Thursday- hooray! 🎉
Goodnight all - hugs to each of you!
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Good morning everyone! Finally feeling better. Start cycle 3 of clinical trial today with Cytoxan. Hope it starts kicking in soon before the beast gets away from us. Thinking of you all. Wish we heard from you more! This group helps me so much. I don't have to explain ....you just understand. Cathy
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Hi Cathy,
Glad to know you are feeling better and also hope Cytoxan starts to do its magic.
It seems things are very quiet on all of the threads these days. Not sure if everyone is just enjoying the summer or ? I also find this site so helpful that I feel slightly deprived when the "voices" are quiet.
Hugs to all. Pat
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I want to chime in and keep this thread going strong! Really enjoy hearing from each of you, as your encouragement and candor is priceless.
I’m just finishing up my 2nd infusion of this Halaven cycle and I’m so tired. Feeling better today and went to my son’s doctor appointment and ran an errand, but back home and resting again. Just don’t have the stamina to go-go-go. Also, it’s so blasted hot here - zaps any energy I do have. Has anyone taken an extra week break from chemo? Would absolutely love that. I guess I need to see where my TMs are after this cycle, as they went up last time.
Cathy, I think I’m confused as to all the drugs that you take on this clinical trial. What is your cycle schedule? I really hope this combination is the ticket for you as we all need some good news. Will this trial measure TMs or do they just go off scans? I haven’t decided about going to Mayo yet. Trying to determine if I have the energy for it and if it will be worthwhile.
Pat, the dog in your avatar is beautiful and looks very sweet. I have a miniature golden doodle named Cody. He is 9 years old and seems to run our home. Our fault - never had him trained and now he has trained us!
Hope everyone is feeling good today - sending you each a hug!
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That's Sadie. She may not be talking to me this afternoon. A "day at the spa" is not her idea of fun.
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That's funny Pat! My dog Spanky feels the same way. She comes home looking and smelling so much better but she panics when she realizes where she is going. lol Sheri, I get first an I.V. of Cytoxan. I then go back 2 days later and get 4 shots of the breast cancer cells called Brea cells. I then go back on Monday and get 4 shots of interferon given in the same spots as the cancer cells and then I go back 2 or 3 days later and get 4 more shots of interferon. So each cycle has been 2 weeks long. After this cycle I go to once every 4 weeks for a two week cycle. It will be nice to not have to hang out in oncology so much. I've met some really wonderful women with stage IV breast cancer mets. I seemed healthier than most of them. Breaks my heart. I've just been very lucky. HUGS, Cathy
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