peritoneal carcinomatosis
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I would appreciate if anyone on this thread could give me their thoughts. I have read the thread from beginning to end, but could use your input, as you all live with this awful thing every day.
I have lost 20 pounds in the last three months, and have had abdominal pain off and on. I am now maintaining my weight, but only because I now eat ice cream every day, and have been cooking higher fat meals. Until now, it has always been a big struggle not to gain weight, especially after going on the AI. When I saw my oncologist last month, he said he thought he "felt something" in my stomach, and prepared me for a gastro mets diagnosis. However, CT with contrast showed absolutely nothing. I'm scheduled for an endoscopy/colonoscopy on Thursday.
My stomach just doesn't feel right. It's like I'm always aware that it's there, even when it doesn't actually hurt. But after being told he was certain I had mets, the stress has been pretty intense, so maybe that's it, I don't know.
My fear is that because my BC is lobular, the scan is not showing it. Is that possible? Would I have more symptoms if it really has metastasized? If it has metastasized, will the endoscopy pick it up? Thank you very much for any responses -
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Cathy-are you still on Ibrance? I get some itching at the injection site as well
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No, about the Ibrance. I was just on it for 3 months this last time before I had an abdominal flare that was pretty bad. Last month was the 1st time they took me off the Faslodex though. Less itchy all the time. By the way, one of the nurses giving me the injections told me they've had more people with allergic reactions to Faslodex than they used to-- bad enough that they couldn't continue with treatment. They took me off because I switched to Navelbine chemo for treatment. I will say about Ibrance that even though I felt so much better than I had the year before, I felt weak most of the time I was on it...like getting out and walking without help was a bit of a struggle. I did go to New Orleans with my daughter a year ago and walked all over creation. I took hot showers with the heat hitting my legs, pain pills, naproxen and sheer will power and walked all over the French Quarter. Worth every bit of pain! HA! My husband bought me a deluxe walker (Euro Drive) for Christmas. It's been a real life saver. Not only is it tall enough for me but it also has the seat so I can sit when I need to rest. Sorry, Dianarose! Probably more info than you were expecting!! LOL Cathy
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Cathy- sorry Ibrance didn't work out for you. Your hubby sounds like a good man. When I got so sick last year we were away. Hubby rented a wheelchair for me. He joked and said he always wanted to push me around. lol I have days that I feel weak also. Usually in the morning. Not sure why. Last year when my blood cells where committing suicide I didn't even have the strength to stand long enough for a shower. I am still amazed I am alive.
How bad is Navelbine? Did you lose your hair?
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Dianarose--I am on 125 mg/day. I do have problems with leg weakness. Difficult to walk up stairs. I have skull mets too. It worries more that anything. My oncologist says the cancer cells have to go thru to bloodstream to mets to brain. She said it won't go from bone to brain. But she is doing MRI of my brain every 6 months. I get tumor markers done monthly. CT of abd/chest/pelvis every four months. My tumor markers have gone down from over 300 to 70's. Janet
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Firstmate- that's encouraging. I wish whatever is crushing my urerter would shrink, die, pack up and move etc.. it will be a year in August that I have had to pee in a bag and constant infections
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Cathy,
This past time I got my Faslodex shots, I got a red, bumpy patch a few inches wide below each spot where I got my shot (on both sides) that itched liked crazy. I used cortisone cream on it and it lasted about 3-4 days. Weird as it was my 5th set of shots and this was the first time I had that side effect. Not fun!0 -
Sheri, it's been 5 wks since my last Faslodex treatment and I just had to put more Bendadryl on my backside. I will try a steroid cream. Dianarose, the Navelbine hasn't been too easy as I was only getting the treatment every other week because of low absolute neutrophils and anemia. I haven't had hair thinning because of that. The 1st go round with it 2 yrs ago my hair got pretty thin. I, too, have trouble taking showers, etc. on bad days. I have a shower bench I frequently have to use. The days I stand the whole time feel like a real accomplishment. Sometimes after a shower I go take a nap! LOL I'm proud of all of us. We just keep kicking butt!! Cathy
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Cathy- I think part of my problem with the whole shower thing is I tend to think too much in the shower causing anxiety. I have a fear of falling too. It's all crazy but that's how my life is now. I try to think of the positive things like I can now eat and go to the bathroom. Never thought that would be a huge accomplishment at age 56
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Cathy- how long will you do the Nacelbine and will you go back to Ibrance? Does you MO have a plan
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Southernsurvivor- I wonder if taking Clairitin before your shots would help. That's what I do.
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Dianarose, I think that since I had flareups both times on Ibrance, I doubt my Doc will put me back on it. He's thinking Xeloda for next time. I think I will be on Navelbine for awhile. I see him tomorrow about my flareup last week and see what he thinks. I'm sort of feeling like maybe we need to start thinking of the flareups as my new normal. We'll see. I had to be very careful what I ate for at least a year. When my stomach started working again and the cancer got beaten back I was starving!! It's amazing how wonderful food tastes! You never know how good a bowel movement feels until you have trouble with all that. It's a party!! LOL By the way, I have a CD player in my bathroom. When I shower I play my favorite music. The heat and the music help limber me up and put me in a better frame of mind. LOVE, Cathy
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It is actually hard to find true time to post. I don't want to take any time away from my daughters. I do keep up with all of your posts though. Thank you for all of your support. Somehow it is easier to read through the posts than it is to decide what I am going to say in my own posts.
I just received my second "loading dose" Faslodex shots today. It hurt a little more than last time. So far I have not had any itching around the injection site. Sometimes if the medication leaks out of the injection site it can cause increased irritation to the area. Ask the nurse to try to make sure that none is oozing out after they inject. This might help with the itching and irritation that some of you are experiencing.
SouthernSurvivor- you are correct that linitus plastica is primarily a term for primary stomach cancer but there are a few case reports of breast cancer metastasis presenting as this. The GI doctor who did my EGD is the one who used the term. He said as soon as he went in to the stomach and tried to expand the stomach with air, it would not expand. He said it acted like a plastic bag that turn hard and would not expand. He could tell that the lining of the stomach was invaded by cancer. He said there was no mass effect like a tumor growing on the outside but that the cancer was infiltrating the lining. If you google "linitus plastica with breast cancer" you will find some articles about it. https://www.ncbi.nlm.nih.gov/m/pubmed/21571246/?i=.../12435306/related
(I don't know if this link will work). Just remember that the data is old. There have been so many advances in the last few years.
I have been dealing with a recurrent urinary tract infection. I never have them. I was on 7 days of antibiotics after my last round of chemo and 3 days later the symptoms returned! Now I am on 10 days of antibiotics. They say it is because my immune system is lowered. My last ANC was 1200. The pharmacist wanted to stop the Ibrance because of the infection but my oncologist said it was ok to continue. I don't want to stop it! I am already worried that it may not be working but I know it is too soon to tell. I can't tell if my abdominal symptoms are the side effects from the Keflex or the Ibrance or if it is the cancer growing. Sometimes I too can convince myself, either at night laying in bed or in the morning while taking a shower, that I feel more fullness or tumor in the area of the stomach. It is hard not to let the mind wander and think the worst. I too listen to music in the shower. At night I will read a book to try to keep my mind from wandering. I eventually fall asleep. I have found it harder to sleep on the Ibrance and Faslodex than when I was on the chemo. I am exhausted but I wale up multiple times a night.
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CCS648- I am so sorry you are having to deal with this. I started feeling epigastric pain, fullness in the area, and early satiety (got full really fast)- even though I was still hungry. There was no where for the food to go. I would regurgitate food or liquid if I drank or ate too fast. The PET scan showed increased activity in the entire stomach. The radiologist read it as gastritis because he did not see any masses or tumors. Initially they were just going to put me on a trial of Prilosec but with my rising tumor marker, I insisted that they investigate further with an EGD. Thank God I was insistent. They scheduled me for an endoscopy and biopsy. That is when they found that the breast cancer had metastasized to the stomach. They suspect that it may be throughout my entire abdomen and not just the stomach lining but it doesn't show up in any scans. We are mostly having to rely on my symptoms and my tumor marker levels which have always been consistent with my cancer.
My oncologist usually checks my tumor markers every 4 weeks.
I pray for peace and comfort for you as you await the results of your tests.
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Desire- back in November they went into my belly and took tissue samples to confirm it was the breast cancer. Sometimes I feel bloated and sounds weird but feel like I am being strangled by my belly. The past two weeks I have been extremely careful what I eat and how well I chew and it's been better or st least I tell myself that. I am always on antibiotics for kidney or UTI infections. I thought it was because of the naphostomy tube but maybe I would be getting them regardless. I just finished ten days of sulfur and I can tell it's not gone. It's getting old. They are afraid that it will become resistant to antibiotics so they only treat me when it's systematic. As far as sleep, I take Xanax. Even then I have a hard time.
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Good evening. Saw my Doc today (he's been given an award for being one of the best Oncologists in the Seattle area). I asked him about my abdominal flare ups and he said this particular symptom is caused from intestinal spasms due to the cancer. I need to be more careful about eating raw fruits and vegetables. He gave me a pretty thorough pat-down and said he couldn't feel a blockage so whatever caused this episode has worked itself out. Even though it's been 2 weeks since my last treatment, my absolute neutrophils were just above the minimum allowed to get treatment. So this week my Doc lowered my dosage by 10% in hopes I can get on a two week on and one week off schedule instead of every 2 two weeks. We are hoping I can settle in and do this treatment long term. Did I tell you he specialized in gastrointestinal cancers? I had a breast cancer doc when I first started having abdominal issues. I had a heckuva time convincing her I was sure what I was experiencing was cancer related. When she dropped the ball, I fired her and asked to be seen by my current Dr. He caught the cancer right away from testing the ascites. If it weren't for him, I probably wouldn't be here. So I was chemo'd up today. Always makes my system feel weird at first. Tired today so I will sign off and wish you all the very best!! Hugs, Cathy
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Dianarose, have you tried big doses of cranberry pills? I have taken 2 a day for years now just to stave off bladder infections. The other thing that has worked for me is called D-Mannose Powder. You drink it with a little bit of water. It works when it goes through your bladder and the bad stuff attaches itself to it and flushes out when you urinate. You can get it on Amazon. A friend of mine told me her urologist has even mentioned this stuff to her. It might help! Cathy
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Cathy- the cranberry pills might help but not sure of the other. Most of my infections are in the kidney with the naphostomy tube so it goes in the bag and not through my bladder. Will have to research it. Thanks
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Dianarose, I'm sorry. I'm chalking this one up to chemo brain--literally. Products that work on the bladder probably won't help you much!! Hugs, Cathy
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Hi all, I've been very sick since April and haven't had the energy to write, but I try to keep up with the discussions by reading frequently. I'm sorry for all of our travails - constant abdominal/stomach "upsets" are really hard to live with.
Cathy, you mentioned that your next treatment might be Xeloda. I was on it for a short time and it really beat back the cancer but it caused me such severe hand/foot syndrome that I had to stop.
However, in meeting with my second opinion guy, a big deal breast cancer researcher here in Boston, he happened to mention that I might have done better starting at a lower dose than the standard of care, which is 6 pills a day. He said he'd had patients who did well on half that amount, only 3 pills a day. Just thought I'd pass that on for you to keep in the back of your mind. I hope you get lots of cancer-fighting mileage out of Navelbine without nasty side effects. My next adventure will be with eribulin (Halaven).
Wishing all of us restful nights and comfortable days! Hugs,
-Erica
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Hi Erica. I'm so sorry you haven't been feeling well. What a roller coaster ride we are all on. I hope you get some good days too; it's hard to feel crappy all the time. I had another abdominal event today. I realized if these days start coming closer together, I will probably feel the need to throw a tantrum. I don't see much point in us having to feel miserable if a new treatment is available. I mentioned on another site that my new goal is to become the "most eccentric cancer patient ever!" Somehow that makes me feel better. LOL And that's a goal I just might be able to meet! Wrapping you all in a big hug!! Cathy
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DesireMiracles - thank you so much for responding. I deleted my post because in my anxiety I had forgotten that this was a Stage IV thread only, and when I realized it I did not want to offend anyone.
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Dear CCS648, believe me, we aren't easily offended!! Please take care of yourself!! Erica, I will remember what you said about the Xeloda for future reference. Hanging in for as long as possible for now with the Navelbine. Feeling down in the dumps today. My husband is working so hard to get our house in NY sold. I am so thankful he has turned out to have a great support system out there--friends and neighbors. Haven't felt good enough to be out of the house much and where in the hell is summer in the Pacific NW? I've had the heat on 2 days this week. Got to hear the Beatles' channel on Sirius Satellite for a bit yesterday. Made me smile! Wishing you all well! Cathy
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My sister-in-law Jean who made the trips with me to England for all things Beatles died tonight. She had a recurrence of lung cancer her doctors just kept trying to treat as infections. They finally proved recurrence 2 weeks ago which by that time, was too late. She spent the day today in intensive care talking and laughing with family, determined that she would hang around long enough for the cancer drugs to kick in. After everyone left, she closed her eyes and drifted away. I guess not a bad way to go. I am trying to understand that even though her symptoms were exactly the same as when she was 1st diagnosed 2 years ago (after treatment they told her she was cancer free), that her drs. insisted on waiting until they could prove recurrence before giving her anything more than minimum care. It has made me very grateful to my oncologist who isn't willing to wait until I get so bad I have ascites to test. Thank you for the wonderful memories, Jean. I will miss you every day of the rest of my life. Hugs, Cathy
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Oh Cathy, I'm so sorry.....Wish I could give you a giant hug tonight. I makes me furious to hear of yet another misdiagnosis. It's almost like they don't care enough to go the extra mile. I hope you find comfort in the face that she passed peacefully and happy surrounded by love.
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Cathy, so sorry for your loss
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Cathy, I'm so sorry to hear about the passing your sister-in-law, Jean. She obviously was a very special woman. Prayers for you and her whole family as you all grieve this unexpected and terrible loss of someone so dear to you.0
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Looks like we have our home in NY sold. Fingers crossed everyone. We could use some good news this week. Love and hugs to everyone. Cathy
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Hi Cathy, I will keep my fingers crossed and think good thoughts for you. We sold my husband's parents' house a couple of years ago. I was so confusing. They lived in Rochester, NY. We live in Illinois. Had to depend on lawyer and Real estate agent a lot. It was very nerve racking until the closing. We had not sold a house in over 30 years. Things have changed a lot since then. Hope it all goes smoothly. Janet
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Cathy- so sorry about your loss. It is definitely a roller coaster of life that we live on. I think for us the hills and troughs are just a little bit bigger than the rest of the worlds on a day to day basis. I am praying that the sale of your house closes. That would be one less thing for you to worry about.
I completed my first cycle of Ibrance/Faslodex. It tanked my ANC. On Day #26 my ANC is 520. I have to wait another week before restarting the Ibrance. I think my oncologist will keep the dose at 125 one more time if my counts recover to 1000by next week. Of course, one of my daughters and my niece who is visiting from out of state are both sick with bad sore throats. My husband is taking my daughter for a strep culture today. I definitely don't need that right now. I am afraid to go anywhere in fear that I will catch something. I am also afraid to eat any raw fruit or vegetables but I know how important they are in helping me fight this cancer.
I got wonderful news this morning. My tumor marker actually cut in half after just one cycle of this medication. It has made me so happy! It was definitely not what I had expected.
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