peritoneal carcinomatosis
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Pat, I'm sure you have said, but I don't remember, you must have lobular mets? I was on another site and I was amazed how many of us with lobular breast cancer that the cancer just doesn't show up on scans. They are expensive and pretty much worthless for us. I developed gastroparesis and ascites which is what led to my diagnosis of peritoneal mets.. Hope you continue to feel better...that's the best barometer of how we are doing. HUGS Cathy
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Nope. IDC but acting like ILC. Slow creeping thing in my pleural lining and belly. But, as you say, feeling good is the barometer. Thx.
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Talked to the clinical trials person today. She's trying to see if the clinical trial will pay for all the scans. If they find something to watch then I can be in the clinical trial. So far I've never had the mets to peritoneum show up on a scan. I've never had an MRI Did your mets show up on it? Keep your fingers crossed. Spent Mother's Day with an episode. Didn't feel good yesterday and trying to come back today. Even though my Onc wants to raise the Afinitor to the highest dosage. I have a feeling it's not working as well. I really want to do this clinical trial...so much that I'm willing to do the MRI which scares me to death. I get really claustrophobic even with PET scans. Hope you're all having a great day. HUGS, Cathy
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Where is everybody??
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retrocath- seems like I spend half my life sleeping. I sleep 11-12 hours a night and I’m still tired. I think the Xeloda has caught up to me.
Got back from Bermuda on Friday. It was beautiful but the trip had wiped me out. Was so sea sick the trip there. Had stormy weather and 12 foot waves. Did get to play with the dolphins though. That was amazing
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OMG, Dianarose, I can't imagine being sea sick on top of the mets issues. Glad you got to go. Any chance you're anemic? I was doing the same thing until I had recent iron infusions and they helped so much. Take care of yourself! You matter a lot to all of us. HUGS, Cathy
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Cathy, I’ve been anemic for years lol. Do the iron infusions make you constipated? Big fear of mine
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Dianarose, the iron infusion didn't make me constipated at all. Doc used new iron infusion treatment called Injectafer. I had 2 treatments a week apart. They figure it takes about 2 weeks after that for it to kick in. I think mine kicked in at about 3 weeks from 1st infusion. Went on trip with husband and wasn't tired once. Wishing you luck!! Hugs, Cathy
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Lovely Ladies, my apologies for not posting since my original contact. I have been enjoying a 'relaxing break' in hospital after another 'episode'. All good now after IV Calcium, fluids and blood transfusion.
Dianarose - I have also been anemic for years....I have vitamin B12 injections every month but reading what you and Cathy are saying perhaps an iron infusion is the go.........? Shall follow that up.
Cathy - wonderful news of your clinical trial. Congratulations! My peritoneal mets are very extensive and do show on CT (with tracer) scans. In many ways I think that it would be preferable if I did not see the nasty little critters floating around my belly...!!!
I was on the highest dose of Afinator after my bone mets was Dx. I suffered a nasty allergic reaction to it which I did not realise until I was quite ill. I understand that many ladies tolerate it very well.
I am on Xelabine (Xeloda in the USA) - why can we not have universal brand names..? I am tolerating it very well and for the first time in 14 months my TMs are decreasing. Apparently the big D is a SE......not for me....I have the big C instead.....lots of 'poo helpers' are swallowed in the evening.
Wish we could have an 'super energy infusion' - I would be 'first in line' for that!
Sending BIG and gentle squeezy hugs, Jane
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Hello to all - glad to see more postings and hearing from everyone. Keep plugging along, gals
I’m still here! Trying to recoup from my son’s college graduation this past weekend and my parents just left town from that.
I had my Halaven chemo yesterday. I’m thinking I’m on cycle 15 now. My port would flush but wouldn’t draw blood, so they had to give me some med to break up the sheath that they think had formed. After waiting an additional 30 min for that, it worked. I have had to do that once before. I had so much waiting yesterday between waiting for MO and then waiting for chemo, I was there 3 hours and 2 hours of that was waiting time. Ugh.
Good news is that my TMs dropped 8 points. Not much at all in the scheme of things but still stable. My TMs have been stable - a little up and then a little down - these past 4 cycles. I’m just trying to get as much as I can out of this treatment.
Regarding scans, my belly mets do seem to show up on a CT scan with contrast. Well, at least some do. It does show when I have progression and then it does show when I have increased “thickening”, which I know indicates a problem. I’m sure it’s not as clear as some scans for IDC, so it’s a good thing for me that my TMs are really reliable. When I have progression, they really start increasing quite a bit.
Time to get going on my day.
Cathy - keep us updated on your clinical trial. That will be interesting for all of us.
💕💕💕
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Hello all! I go in tomorrow to sign papers for the clinical trial. Something has to show up on one of the scans or they won't take me. I know I always say I love my Doc and I do....but....he doesn't talk to me. I have to know what questions to ask and he still tends to give me one word answers or he just nods his head. I really needed his opinion on this clinical trial and he seemed ambivalent. My husband tried to get him to talk and still only got minimal responses. I am headed for full dose Afinitor if I don't do the trial. It seems like my Afinitor dosage has gone up exponentially and I only now have full dosage to go to. It's been changing now about every 6 weeks or so. I'm getting lots of breakthrough (I do feel better in between, though that could have more to do with the iron infusion). Do any of you have the strong silent type Doc? What do you do to get him to really communicate with you? He laughed and said in March that I'm now in the top 5% with cancer for 15 and 1/2 yrs since diagnosis. I don't feel like I have a lot of room to grow or room to make a treatment mistake at this point. I also have the problem that since my cancer doesn't show up so well on tests, it would be hard to switch to another doc. Any suggestions?? Sheri, that port problem happened to me too. I ended up pulling up music on my phone and dancing around the infusion room trying to get the port to work. I had about half of the nurses join me in my port dance. Glad you got your port working. Jane, glad your treatment is working for you. I didn't tolerate Afinitor at all the first time I was on it 5 yrs ago. This time they started at a lower dose and I tolerated it better. Great to hear from you. I will let you all know how it goes tomorrow. I'm hoping to have a good long talk with the clinical trials person and explain my concerns. At the same time, the clinical trial feels like the right thing to do. HUGS EVERYONE, Cathy
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Hi Cathy - I love my MO but I wish I had more time with him. Seems like I talk to him for about 10 min. I need to do a better job of writing down my questions as inevitably I forget something. Also, my MO is on vacation a lot (one day a week and I think one week a month) so I see the PA too, who I love but the continuity isn’t always there. It’s hard as I would like to have a conversation for at least 1/2 hour but there is never the time for that.
On this clinical trial, what phase is it in? Can you ask your MO a direct question about it, such as “Do you have specific concerns about me going on this trial at this time? If so, what are they?” I personally haven’t looked into trials since I’m going with the proven chemos now, so I’m not sure exactly how they work. Do you have other chemos on your radar that you haven’t tried yet? I have a few after Halaven but my list is getting short! Keep us informed of how it goes and wishing you the very best! 💕
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Hi Sheri, it's a phase I/IIa trial. SV-BR-1-GM targeted immunotherapy in metastatic or locally recurrent breast cancer patients. You can look it up at www.clinicaltrials.gov Really interesting. I will keep you all posted. HUGS, Cathy p.s. I'm going to ask the clinical trials gal some questions...she must have talked to my Onc about this. Maybe I can get some feedback from her what he thought. At least I will get some scans out of this. See what happens.
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Found out if I have progression from this study, they will roll me over to the clinical trial for lobular breast cancer using Keytruda. It's usually used for lung cancer but it also disrupts lobular cancer they have discovered. They started clinical trials in England already and are doing them here now. If I don't have progression but can't tolerate the current study, I will just go back to whatever treatment Dr. Jiang wants me to try next. I can start scan testing next Friday. Off of Afinitor as of now. If they can just find a scan that works.... I think they are hoping the company running the clinical trial would be willing to accept the CA-125 tumor marker test that works so well for me. We'll see! Have a great weekend! Love and hugs, Cathy
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Good luck Retrocath ! Hope this works for you , it might be what we all need.
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Cathy, did they test your tissue sample to make sure you qualified for Keytruda? They did mine and said I did not. That it would not help me. I was bummed
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Dianarose, thanks for mentioning that. I had a Foundation One study done and the only thing they came up with to help me was Afinitor. So maybe I won't qualify for the Keytruda study. No tests set up yet. Should start on them Friday. Hugs, Cathy
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Cathy, seems the Foundation One test has been right about the Afinitor, as it has worked, right?
The easiest mutation testing for me to do is the Guardant360 as it's a blood test that supposedly detects 70+ mutations. I would like to do the Foundation One test but don't think I have any samples from my Mayo visit. I think my cancer was extremely hard to find. All of the samples taken in Dallas in my stomach in 2014 via an endoscopy showed no cancer when really it was in full force via my TMs which have always been accurate. Hiding somewhere in the abdominal wall even though I had this soft tissue growing out of control blocking my duodenum- still couldn't find cancer cells there. So weird. Mayo dug deeper and found it but it wasn't easy.
So, I did the Guardant360 blood test in early Feb 2017 that was $$ and it showed Ibrance & Faslodex to be my winning ticket. TOTALLY WRONG. Got even higher tumor markers and progression after about 3 months on that combo and showed progression via CT scan. For me, I truly think the Faslodex “jump starts" my cancer. Second time I've tried Faslodex (first time I did Faslodex alone and within 3 months by duodenum was 100% blocked.) I was skeptical this time but tried the combination. Very disappointed in the results. That is when I went on Halaven in July 2017. Guardant360 didn't show Halaven to work although it has. Great.....gives me a lot of confidence in these new tests! Bah humbug!
Sorry for the downer post. I'm just frustrated when it seems like such a crap shoot. Thanks for listening as I feel I can learn so much from everyone's experiences that I can't learn from the medical community.
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Hi Sheri! You are so right. If I just went by what the medical community tells me, I would be dead by now!! It's so important to be your own best advocate. It doesn't hurt to have family with you who won't take no for an answer. I just stopped the Afinitor to get ready for testing for this clinical trial. I don't think I can go back on it if the clinical trial fails. My mouth is just full of sores and I have developed a nail fungus from hell. Also I have discoloration and bruises all over my hands and arms. Something is not right!! My gut is doing ok. I have more frequent feelings of gut discomfort but it's not as bad and the pill I'm on (phenohytro) has been a game changer!! I hope anyone who has episodes like me will talk to their doctor about this medication. I guess this medication can become habit forming but at this point, that's the least of our worries. Sheri, my cancer has been that hard to find too. It makes you a little crazy, doesn't it? How can something so dangerous hide so well? It's remarkable that we get diagnosed at all. I really do feel that I had cancer in the peritoneum much before I was diagnosed. I had terrible acid reflux for a really long time. Bet the little buggers were spreading then. I did have my gall bladder removed back in 2003 and nothing showed up then....at least not in the gall bladder. I haven't heard back from the clinical trial gals yet. I thought they would have booked my first test by now. Maybe fighting with insurance company?? I need to go home to Boise ID. June would be best for my niece, whom I usually stay with. I just don't think I can schedule around a visit right now. I have a dear sister there. We are down to 5 of us....4 having died. My sister, Ginny, is 9 yrs older than me. She's so smart and keeps me grounded. She's had lots of health problems over the years. She's doing fine and I'm the one going down the tubes. You just never know!! All of you help keep me sane. We need to hang in there together! LOVE AND HUGS, Cathy
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I found out yesterday that the lump under my arm pit is cancer. Had a meltdown. Enough already. Scheduled for surgery on Tuesday to remove the rest. I am praying she gets clean margins.
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Well (expletive), Enough is enough already, Dianarose! I'm just so sorry. I hope they get clean margins too. No fun to have to go back in at a later date. That happened to me, along with a staph infection in my right breast. I don't have any lymph nodes or extra tissue in my right armpit. Sending lots of love and wrapping you in a big hug!! Finally got my calls for tests for the clinical trials. They are all over the place so they will really have me running. Spent a lot of time "on hold" today. It actually made me peevish. Funny, we handle the big stuff and then get fed up with the minutia. Keep us posted, Dianarose. You are important to us! Cathy
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Dianarose,
This truly sucks! Hang in there and we will support you as much as we can though this - we ❤️ you!!
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Cathy, I was chuckling to myself reading your sentence in your last post about getting “fed up with the minutia," as I just royally told off BCBS today about a medical claim related to my son. I had received two statements now from a medical facility stating my insurance hasn't paid a claim from mid-January. I call BCBS and they stated it's “in process." When the rep looked to see why it had not been processed or paid (as I waited on hold for 15 minutes,) apparently the billing from the medical facility was incorrect and BCBS had to reject it electronically and note for the medical facility to resend a corrected claim. BCBS did this while I was on the phone and it took them 2 minutes. Really?? I told the BCBS rep that it took my phone call to them today for them to realize the error after sitting on the claim for 3 months?? Then I said that I have Stage IV cancer and I shouldn't have to waste 1/2 hour of my time making these type of phone calls to ensure they do their job! I'm so tired of incompetency everywhere I turn. No one seems to want to do their job right the first time but is fine with others taking their time to find the mistakes.
Sorry for the long rant. I'm just tired of using my time and energy on stuff like this. Ugh.
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I get it, Sheri. I spent 2 years fighting with our insurance company (at the time) to pay for my port and placement. It had been preapproved and they kept saying it hadn't been. That went on for over a year and then they changed their story and came up with some other reason it hadn't been covered until they had wasted 2 years of our time. We were told not to pay it or the insurance company for sure wouldn't reimburse us. Finally my husband's company got involved and kicked butt until the insurance company got their sh*t together. Lee's company gets us really good insurance and pays for most of it too. It made them really mad that we were so mistreated. I was scheduled for a 3D mammogram in July but just found out it was bumped up to Tuesday. What a mess today was. I haven't had a 3D mammogram. Did it work for any of you? A regular mammo never showed up the obvious thickening in my right breast to begin with. Took and ultrasound and then needle biopsy to prove cancer....that was in November of 2002. I'm going to have a nice cup of tea and relax. CHEERS! Cathy
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I was trying to catch up on all of you wonderful ladies. I am sorry i just dropped out, but the worst thing happened to our family, Dani passed in March. She had the peritoneum mets which i believe were completely ignored. the day b4...doc finally sent her to drain the ascites, she was in such bad shape. Her BP had bottomed out, but they pushed ahead and drained liters...then she went home, the kids were by me they were suppose to sleep over, it was a snowy day, but she wanted them home. It was good because they were able to see her one more time. The numbers were horrific, she had absolutely no energy, and she looked at least 6 months pregnant on a 5'1 80LB frame. Shocking. The last MO was suppose to be a fighter for life, he is in his late 70's, but either he lost his mind or he was just plain negligible. Whatever it is, she was at home and this happened in the middle of the night. So for that we are thankful.
Your support meant so much to me, otherwise we were so alone. No one can understand that every day is a struggle. Everyone was in gr8 shock, she was always thin, so yes she lost a lot of weight and had the belly, but somehow she covered up, she had gone to a school function just 10 days before, and no one thought of a/t extreme. That's the way she wanted.
I was concentrating on the liver mets thread, because her liver was so bad and she had the Y90 procedure, plus tonz of radiation all going about at the same time. It was hard to get to the other threads. I'll be checking in on you still, but thank you for being there, and best wishes for everyone to get the relief needed.
Warm hugs
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Dearest Momallthetime, I am so very sorry about Dani passing. Sounds like with her body weight and ascites, the poor thing just couldn't fight it anymore! Darn doctors anyway that don't listen when they need to. Please check in with us once in awhile. It's a nicer world out there knowing you are in it!! Wrapping you in a big hug, Cathy
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Hello all! I had my first 3D mammogram today. It was needed for the clinical trial. They were the only medical office that had my original mammograms with the cancer on them. Found out today they had been purged. What's up with that? They could have at least offered me one of them. So nothing showed up on mammo. I wasn't surprised. I figured with all the CT's and other tests I've had over the years that it would have shown up on one of those if the cancer had spread in my breasts. Had terrible episode over the weekend. Got it under control in time to go to 60th birthday party for a friend. While they were eating steak, corn and sausage, I was having a "cup of soup!" I also had trouble talking. Words just weren't there. I finally realized this morning it was from the phenobarbital in my medication I take for the episodes. I had taken 4 over 24 hours. It was like "chemo brain tripled." I just received a wonderful book from a lady in another cancer website all about nutrition. It's hard to make people understand that my body does not process veges anymore. Don't tell me to eat leafy greens. It just makes me feel bad that I can't. I would love a big salad with ranch dressing. NOT GONNA HAPPEN! Keep your fingers crossed something shows up on a test to monitor. It's not like they will be telling me for the first time that I have cancer. LOL I need that spot to monitor!! This clinical trial sounds really important for all of us!! HUGS, Cathy
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Oh MomATT - Thank you so much for checking in and thinking of us. I think fondly and often of you and Dani, and have always followed you on “your” thread to hear the latest news. I was completely heartbroken when Dani passed - she fought so, so hard. You were her greatest advocate and the best Mom, and I can only imagine how devastating her passing was to you and your entire family. You have been through so much and we all truly appreciate the wisdom you continue to share now, as we need to learn from each other’s experiences. As we have all seen, we can’t just rely on the medical doctors for our fate.
Regarding peritoneum mets, I personally think the MOs focus on mets in the liver, bones, lungs, etc. before the belly as they have no idea what to do with belly mets! As much as I love my MO, he told me I’m his very first BC patient out of thousands with belly mets only. Many times I feel like a guinea pig and this cancer fight is such a crap shoot. I’m on my 7th treatment in 4 1/2 years since being diagnosed MBC, which also includes one major life-saving stomach surgery. Seems most of us try the same chemos regardless where the cancer is, and we see if we get a response or not. I try to read several of the other threads, as I learn so much, and realize fighting cancer is truly a full-time job.
Thank you again for being so open about your feelings and knowledge, especially as you are still in the beginning of grieving Dani’s passing. You are so kind and compassionate, and we are blessed to have you here on BCO. Please continue todrop in on this thread anytime.
❤️ Southern (Sheri)
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Hi Cathy - thanks for the update. I hate that you are consistently fighting these “episodes.” This cancer SUCKS! How are you otherwise feeling being off Afinitor (besides the episode attacks)? I got a few mouth sores last Thursday and nothing seems to be helping. (Got prescription mouthwash from MO on Friday and using oragel.) Woke up this morning and the right side of my mouth was swollen. MO wanted to see me and they ended up giving me a prescription for viral sores. I don’t remember ever having these before and I sure hope this works - not fun. It is ALWAYS something.
It is amazing that your original mammogram showing the cancer was purged. Ugh. I had a double mastectomy the first go-round with BC, so haven’t had a mammogram since 2007.
Yes, we need something to show up on one of these tests for them to monitor in this clinical trial. Keep us in the loop!
💕💕💕
PS. Sorry that you are being told to eat veggies. I agree - no one gets it like us
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Hi Sheri, While on Afinitor I was using Dexamethasone mouth rinse. I guess it's a steroid. Worked great until that last week of taking Afinitor. Suddenly I developed about 5 sores at the same time. It's just miserable, isn't it? I suddenly developed bruises all over my arms and hands too. Something was definitely not right. Still on Letrozole. Woke up twice last night with muscle spasms in my legs and feet. We sure know how to party! Hope everyone out there is still checking in. We miss you! Take care everyone! Cathy
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