peritoneal carcinomatosis
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Hi momallthetime,
If you wouldn't mind telling me where you are, I could ask the docs where I work if there's anyone near you they'd recommend for a second opinion. My second opinion guy is a big deal in breast cancer research and a wonderful, caring doctor on top of that. He works at both Beth Israel Deaconess Medical Center and the Dana Farber Cancer Institute. I don't know for sure, but he might have contacts in your area. I'd be happy to ask if that would be of help.
Treatment decision time is so stressful - as my dear Dr. Come keeps reiterating, there's no way to tell in advance what the right choice is - you only know retrospectively. If it worked, it was the right choice. Charming, no?
Take good care, - Erica
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rara- Taxol seemed to work for about ten rounds then things started to progress in the wrong direction. A/C is a combination of Adriamycin and Cyclophoshaide. Not sure if I spelled that right. I got two infusions , one a week for two weeks then just did the Taxol. When the Taxol stopped working she switched me to what she calls a low dose of A/C. Trying to get ahead of the cancer long enough to start Ibrance and Letrozole. My red blood cells and platelets have been the issue. Platelets dropped down to 54. Got them up to 96 as of last week but normal starts at 170. Just so mentally worn from it all. Slept most of the day today. Just felt like I was in a bad fog. I am definitely going to ask her about the max dose on this red devil. Thanks for sharing as I did not know. Learn so much from each other. Hugs.
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Dianarose that has been part of the trouble with Xeloda for D, platelets also dropped to your number then she'd have to wait a week..Als, the HGB was low. These #s screwed up her possibility of going strong with it.
What's your HGB numbers? Hers was so low, she kinda fainted, had to go to the ER, due to allll low numbers. It was such a mess. I know for a fact Onco should have reacted sooner and given her Neulasta sooner. They were hopeful it will have fixed on it's own.
Sorry you are in the fog. Hope you get better results soon.
I was posting mostly on the liver thread, just wanted to update you, she's going ahead with the IMMU 132, i gotta pray real hard the ascites hold. what a curse!
All my wonderful people on these threads were so so helpful. Truly unbelievable bunch of Human beings.
I still called the radiologist that signed the Pet/Ct, i wanted to know if he did not think it wise to do further scanning, he kinda said no, at this point he was comfortable with the way it is. Let's hope he is right.
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Hello to all of you who are dealing with this type of mets.... Has anyone being treated with Cyclophosphamide & Doxorubicin?
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Hi everyone,
Just got back from MD Anderson for a second opinion. After my local onco said my options have become limited I didn't accept his answer and the Gemzar/Carbo combo was only making me worse. Since the second cycle of the combo, I have shortness of breath, weak legs, no appetite and absolutely no energy. Local onco didn't seem worried but now I am going on 4 weeks since a treatment and still having difficulty plus the fluid in now building a liter a day. Have to get a para twice a week. I am going to talk to him about the indwelling catheter so I can drain at home.
Anyway the specialist at MDA said I have many options left and can then go on clinical trials. She was faxing my local onco to give him a treatment plan and I meet him on Monday. The dr at MDA agreed Gemzar/Carbo is not for me.
Erica do you still have the cath in or did they take it out? I have had my lifetime of Adrimycin and Taxol I had a reaction on the very last treatment. Avastin worked well for me and kept the ascities away for almost year. Then insurance denied anymore because the dr said the Abraxane I was taking with it had become ineffective. Now trying to find something that will work.
That's my story for this week. Will keep you posted.
Charlotte
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Charlotte let us know what your new treatment is, wish you good luck.
Dani started her treatments, now we wait. It's once a week, full day, for 2 weeks and then one week off. Her numbers have to hold for her to get the infusion of course, so we hope for the best. Scans are officially at 9 weeks, but in a way i'd like to ask for it earlier at 6 weeks, i am not saying a/t yet, let's hope she is good till 6 weeks. And so we wait again.
Take care everyone, wish a peaceful weekend.
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Hi belly mets friends -
Thanks for the update, Momallthetime! Would love to hear how each of you ladies are feeling on all the various treatments.
Charlotte, how are you doing this week? Have you started your new treatment plan? I would love to hear how MDA operates as the "second opinion" specialists. Do they work ongoing with your local oncologist? I got the mets to the belly diagnosis from Mayo Clinic in MN in May 2014 and they did converse with my local oncologist at the time and they agreed to put me on Abraxane. It didn't work for me at all. I haven't gone back since, as it is very far away. MDA is 4+ hours away from me, so would be a pretty good resource for me for a second opinion, although was told on another thread that MDA no longer gave second opinions but would work with you for clinical trials.
Hope you all have a pain-free weekend!
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Hi everyone, I ended up doing 4 extra A/C infusions to get things under control so I could start Ibrance. Finally my platelets went up to normal so I started Ibrance three days ago. Just wondering if anyone has tried Ibrance for belly mets? MO says we won't know until we try. So far side effects are nausea, chills and no appetite.
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Dianarose, glad your bloodwork is up and you were able to start Ibrance.
I'm currently on Ibrance and Faslodex. I've been on Ibrance since late Oct 2016 (was taking with Letrozole) and then in early March I switched to the Ibrance and Faslodex combination. Truly don't know if this will work for my belly mets, but the Guardant360 blood test that I just took in February said that I should respond to these two hormonal treatments. Only time will tell. For me, Ibrance has been very manageable so far. Give your body some time to get used to it and hopefully the side effects will get better for you. Keep us updated!
Take care all
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Thanks for asking Southernsurvivor. Getting a second opinion was really easy. I filled out the new patient request online and they called me the next day. The patient advocate asked what I was looking for and I told him clarification on the cancer and that my local onco said my options have become limited. I was able to get an appt and only took 3 weeks.
We left last Sunday and came back on Tuesday. I have been sick since. I am now collecting 1 liter a day so I'm going to get the indwelling catheter put in. I see my local onco tomorrow to start a new treatment plan. Since I took the Gemzar nothing has been right. Shortness of breath, weak, absolutely no energy, can't work and of course the fluid keeps me from want to eat.
How are you doing
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Hello! I was on Ibrance with Letrozole until breakthrough at about 14 mos. I then had the Halaven treatments until the end of December. I'm back on Ibrance with Faslodex and finding it much easier to handle. Letrozole gave me terrible muscle spasms even in my joints. I'm finally feeling better--so glad for the break from nausea and everything else. I just don't handle chemo very well but is a necessity when I need to get my symptoms under control. Trying to clean house -- it has the winter doldrums -- not to mention I didn't feel good enough to keep it more than minimally clean. Wishing you all sunshine and warmth! Cathy
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Diannarose I was diag 1/16 with bone and belly mets and I have numerous very small spots on my lungs. I have been on ibrance/letrazole for a little over a year. The stuff in my abdomen has decreased quite a bit according to my scans. I can also tell it's working because I feel hungry again and have gained back some of the weight I lost--which I didn't really want to do. The lung spots are unchanged. My oncologist says it's hard to tell with the bones because it's difficult to determine what is healing vs new lesions. the bone mets is widespread--even my skull. Hope you do well on the ibrance. Janet
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Janet- so glad you are improving 👍. My bone mets are in my spine and skull. MO didn't focus on the much. More on the belly mets. How soon after starting Ibrance did you have scans? My MO isn't scan crazy with me as my tumor marker has been more reliable. I will have that done again in 3 weeks. Last time it was done it was around 164. Does your MO do the tumor markers?
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Dianarose I was diag with the belly mets 1/2016. Started on Femara in January and the ibrance was added in Feb. I get tumor markers every month. CEA has always been normal. CA 15-3 and CA 27.29 both started out around 359. They have consistently come down and are 80-90 now. I get chest, abd and pelvis CT every 4 months. I've had one MRI of my brain Nov 2016. She is going to do it every 6 months since I have extensive skull mets. She said it doesn't spread from bone to brain--it has to go thru the blood stream. But she is going to keep an eye on my brain because it makes me very nervous. How long have you had the belly mets? I know people live a long time with bone mets, but I don't have any idea about the belly stuff. So far no major organs are involved. It was just coating the inside of my abdominal cavity and my bowel. I think I was headed toward a bowel obstruction at the time of diagnosis, but luckily it didn't get that far and appears to be improving. Hope you tolerate the ibrance OK. Janet
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Janet- I think my belly mets have been there for 3 years or so when I think if all the stomach and intestinal issues I had then. Really found them for certain last June. I had a kidney back up and now have a naphostomy tube. Then I ended up in the hospital with an intestinal and stomach blockage. I pray it never happens again. I too have skull mets and was glad you said it doesn't spread to the brain that way. Been scared of that. With the Ibrance I have nausea in the morning, chills and no appetite. Could be worse. I am really careful not to eat things like corn, popcorn. Nuts etc.. I never want to have my stomach pumped again. Horrible experience. How have your counts been
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Dianarose, The first couple of months on ibrance, my WBC and absolute neutrophils were a little low, but I never had to hold the drug or do a lower dose. Since then my counts have been stable. My chemistry has never had any abnormal readings. Janet
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Janet- what about your platelets? When I started Ibrance my white count was only 4 so hopefully it won't get lower. I just want this drug to work so bad
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Dianarose My platelets were a little low initially, but have been fine since. Janet
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Dianarose sorry for how you've been feeling. Are you on the Ibrance thread? They are great there too. Dani was on this tx last year, but now Onco says she will not respond to Hormonals. It's tricky with Ibrance for some people, numbers could fluctuate. If it gets to be a real problem for you, it could definitely be a lower dosage and so on.Thanks for the support.
Capniva so which one will you be starting on next? So glad you got your second opinion. Hope the draining could make you feel better soon.
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Hello Everyone! My absolute neutrophils were down to 1 when I saw my Doc last Thursday. My insurance changed March 1st so I've been having a hard time getting my Ibrance mailed to me. Holdup with insurance. I have a call in to my Doc this morning. I think my days of Ibrance are now over. I had a terrible peritoneal carcinomatosis flare yesterday. I get abdominal pain, bloating and gas so bad that it doesn't alleviate until I'm throwing up. It's like I have to upchuck to relieve the pressure. I'm hoping he will switch me to Xeloda. I was on it when the cancer was in my bones and I did really well on it. I check and read the posts every day. What struggles we all have. Normalcy seems like a long ways away doesn't it? I'm always with you in spirit. Sending you all love and hugs. Cathy
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retrocath- so sorry you are not doing well. Do you have the Ibrance copay card? I only pay 10.00 a month with i
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Cathy--sorry to hear you aren't tolerating the ibrance. I had a 2 week episode recently that I was having abdominal pain/soreness that would wake me up at night. I couldn't stand for my one year old granddaughter to lie on my chest/stomach. That's her favorite place to take a nap. We were on vacation and I was eating different food and probably more than usual. I was getting really worried. It has settled down since we got home and I got back to eating more normally. I had tumor markers drawn Monday and they are still trending down. It's scary every time--I started my 15th round of ibrance, so now I worry about how much longer before it quits working. I haven't had any progression since diag 1/16. I know it will happen at some point. Not sure I will be ready for it. So far I have tolerated ibrance/femara pretty well. Hope you can get on meds that are more tolerable to you. Janet
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Firstmate- if you don't mind me asking, was wondering what your tumor marker is after 15 cycles
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Dianarose-- 1/11/16 before starting anything CA 15-3 was 280 . CA 27.29 was 312. CEA has always been normal.
3/27 CA 15-3 is 51 and CA 27.29 is 72. My scans the end of February showed the abdominal stuff had decreased. Lymph nodes lt axilla are stable. No change in extensive bone mets. I have osteoblastic bone mets, not osteolytic. It looks like little spots, but everywhere. No actual big areas of destruction. I don't know that I have any bone pain from the mets. Have arthritis and have pain from that and the femara. I also have numerous less than 5 mm spots thru out both my lungs. They have been unchanged since diagnosis. Overall I feel pretty good for the shape I'm in. Janet
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Janet- I am so impressed how much your markers dropped ! Hopefully they keep dropping 💕. I am hoping that Ibrance kicks butt in the area of my urerter so I can get rid of the naphostomy bag. I have a cronic infection in that kidney. Always in antibiotics but it never goes away. MO didn't talk much about my bone mets other then one spot on my spine and skull. I guess she figured they were the least of my problems. I don't have pain so I can't complain. Diana
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Dear All, Back to Navelbine. I start chemo again next week after a 3-month break. Ibrance didn't work for me the 2nd go round. I was just starting to feel better after Halaven so not looking forward to chemo again. Navelbine really kicked cancer's butt but it also kicked mine! At least I have a week to prepare myself. Love to you all. Cathy
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Cathy, Sorry to hear you are back on the harsh stuff. I consider myself very fortunate to so far getting by on oral meds. When I first saw my oncologist after mets diagnosis I was all gung-ho to start the big guns and kick cancers a**. She patiently explained the rational for using hormonals and ibrance. I was reluctant at first, but now I am so happy that it's working for me. Hope you tolerate it better this time. Janet
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Cathy when D got the liver mets, Onco was all excited to put her on Navelbine. Unfortunately it did not work for her. Not much does. But what I wanna tell you is that this doc was really counting on it, so I think it's good stuff. good luck for you.
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Thanks Ladies! You always help! Been trying to wrap my brain around chemo again. Hoping it works and not looking forward to side effects! Have a great weekend. HUGS, Cathy
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Hi all -
Things seem to change with each of us so quickly - it can be so frustrating. I saw my oncologist today. My lab work after 4 weeks on Ibrance and Faslodex showed really elevated liver enzymes. My liver enzymes were in normal range just a month ago - now 4 weeks later they have tripled. WTH??!! Oncologist seems to think it may be the Ibrance, but I'm not so sure. I was on Ibrance and Letrozole before, so not sure why he thinks it's the Ibrance. I have to redo labs in 2 weeks. Has anyone seen this before? I'm worried. I just had CT scan in Feb and showed only belly mets supposedly, but this ILC is sneaky!
Cathy - so sorry you are returning to chemo. It's hard when we know exactly what we're getting into. Definitely have to mentally process and prepare.
You are all in my prayers!
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