peritoneal carcinomatosis
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Hey DesireMiracles!! That is fantastic news!! The good thing about Ibrance is it comes in different dosages so if you can't tolerate the 125 mg maybe a lower dosage will still work for you. Sending love and positive thoughts!! Cathy
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The first three cycles of Ibrance my tumor marker kept coming down. Not even a week into cycle 4 and it's up 17 points. Bummed out
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is anyone with peritoneal involvement-- triple positive? I am triple positive with peritoneal involvement and am currently enrolled with the www.HER2CLIMB. com study at UNC Chapel Hill with Dr. Anders: the treatment protocol uses Herceptin-Xeloda and Tucatinib. Thanks for your feedback.
Heather
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Erica that's just terrible, you were missed. I actually know of a few ladies that just started Halaven. Babs in the bone mets thread, after Xeloda failed her. My DD of course had it 2 years ago, was not bad, she did loose hair, but she did not have a long run with it.
Janet if you do have mets to the skull, my DD also started only in the skull, and they did first at least every 3 mos, then 8 weeks when they saw more things and then every 6 to 8 weeks. Six months seems a bit long no? How extensive are the skull mets.
In the past scans it showed D had peritoneal ascites, now it said in the last CT scan pelvic ascites? Could someone explain What does that mean? Where in the pelvis?
DesireeMiracles I know of someone she takes Macrobid 100mg for a month, and then I think 50mg ea day for a while to stave off UTI.
Dani is doing well otherwise. Waiting on liver biopsy results.
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DianaRose--don't fret too much about a bit of variation in your tumor markers. In the 2 years I have been on Ibrance my CA27-29 fell over the first year or so with occasional slight rises and more significant declines, so that by month 15 my level was half of what it was when I started it. In the last 10 months it stays pretty much within 10-15% from month to month. It rises a bit and falls a bit, but mostly stays within 10% of it's usual value from month to month.
Also, Ibrance's average time to response is about 4 months, so it might be that you are having a bit of a tumor flare as cells die off. I've learned to not stress when my markers rise a bit one month and also not to get overly excited when they fall a bit. So far I have not had a sustained rise for more than 2 months in a row before they fall back to the usual range.
It's too soon to get yourself worried; try not to project or predict your next month's labs, and remember to be grateful for the good response you're having so far. It's more fun to spend your days that way!
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Mica1- thank you for your post. It made me feel better. I haven't had scans since February so I guess it is do regardless. It still can mess with your head.
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Abdominal pain all week--the worst Thursday thru today. What do you guys do for gas and abdominal pain? I can't be the only one! Hugs, Cathy
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Cathy - I'm so sorry for your abdominal pain and that I don't really have any good advice! I haven't had terrible pain there, mostly lower pelvic pain that comes and goes and I just have learned to live with it when it happens. (Not good, I know.) I also have generally had nausea in the past vs. pain in the abdominal area. I hope someone will respond with their experience as I would certainly be interested in a solution to this too.
So, found out on Thursday that my TMs have skyrocketed up 39% and liver enzymes are way too high. Don't know what the heck is happening after good results and normal liver enzymes 4 weeks ago. I did have a fever the previous Thursday of 101.5 and 99.5 on Friday (no other symptoms) and the fever went away with a few doses of Tylenol. Then I did my lab work and checked for UTI on Monday as I was concerned I had an infection. No infection was found but they did give me a 7 day antibiotic on Monday in case I had a lingering bacterial bug. I saw my Onc on Thursday and got the bad news and I was really quite shocked, even though I hadn't felt quite right. Now I'm doing a CT scan on Tuesday to check for progression. Full labs again in 2 weeks. This constant up and down is so annoying and exhausting!
Wishing you all peace and pain-free days.
Cathy - keep us posted. I sure hope your doctor can offer some relief soon for your pain.
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Oh Sheri, I'm so sorry. What a roller coaster ride. Hoping it's the medication causing your issues and not progression. I haven't had a test except for TM since a PET scan in Sept. Maybe it's time for another. HUGS, Cathy p.s. I totally understand learning to live with it. That's pretty much what I've been doing for awhile now. Now I'm pissed!! LOL
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Cathy could it be more ascites? That could be so uncomfortable. So sorry you are going through this. No brilliant ideas. Would you use dilaudid as a pain killer?
Sherri no explanation for this craziness. It's a good idea for you to have the scan, at least you will know where you are holding. So sorry.
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D is actually on 2 day trip drive with the children, very excited about that. I am a bit mad, i was waiting for the results of the genomics test, and after calling the MO office various times, and I finally called the pathology dept. I found out, that the test she took could take months to get results. Yes, it's an excellent test. BUT who has months?? I wanna have something to go by in case the trial does not work for her. Aghh i am so mad, I'll ask tomorrow if doc would approve biopsy to be sent out also to Foundation One, they are very good, yes F1 doesn't test for as many genes as the other one, but at least we could see if a/t changed. And so it goes.0
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Cathy- I am so sorry about your abdominal pain. I had 2 episodes of severe abdominal pain while I was on IV chemo that had me writhing in pain and in tears. Nothing I did relieved it. I took gas ex with no relief. I took my nausea medication with no relief. I started vomiting because the pain was so bad. That only relieved it a little bit but the gas pains were still there. The gas just wouldn't exit out the other end. I finally ended up taking 1/2 tablet of Ativan to try to make my body relax so that I could get some sleep.
This seemed to happen after overextending myself and not drinking enough water. It also tended to happen when I didn't have a bowel movement daily. It was similar to being constipated but the blockage must have been up higher because I didn't have the urge to have a BM. I just had a bunch of gas and bloating. So much that I felt like my belly was going to explode.
Ever since then I have made sure that I have a bm daily. I take two senna at night. On the days that I don't have a bm or now if it goes more than 2 days, I will use a Pedia-lax liquid suppository just to get things moving. It tends to even help get the gas to move through.
Sheri- I'm so sorry about the drastic change in your TM and liver enzymes. Maybe it could still be due to some infection you had or the meds effecting the liver enzymes. I will pray that the CT scan shows stable or improved disease.
Momallthetime- I'm glad that your daughter is getting to go on a trip with her kids. A change of scenery helps get our minds off the up and downs of the situation we are all in. I hope she is feeling well enough to enjoy herself.
Diana rose- I hear where you are coming from. It is hard to keep our brains from going to the worse case scenario because we have all been in the worse case scenario at some point. It all messes with my head even when I try not to let it. I love Mica1's response. She is absolutely right. She has such an uplifting way of looking at all of it. I hope that everything evens out and that this last set of labs was just a fluke. I will pray that your scans also show stable or improved disease.
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Desire- thanks for the kind words. Not one of my better days. Abdominal cramps and bloating here too. Our minds go crazy when this happens. Of all the dam places our cancer had to go to our bellies. Why not our big toe or something
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I see the physician's assistant this week. I'm going to have a long talk with her on why they don't give those of us with bcmets to the abdominal area better help in controlling our symptoms. The first thing they always ask is if I have enough pain meds. Well we all know that if constipation even mild makes our pain worse, the last thing we are going to want to do is take pain meds that slow down our system even more. I need help with the inflammation and the obvious intestinal spasms so many of us feel. When I have the buildup of gas, it's not the kind that you can pass. It gets worse and worse until I vomit. Usually that helps gradually relieve some of the pressure. This episode, it didn't. I will pass on what I find out. I wish she would at least research it for me and get me on the right track. I had some eggs today with toast and soup. Woohoo!! It's a party. HUGS, Cathy
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Well my regular physician's assistant who knows me so well went home sick. The person I'm seeing instead doesn't know me or my symptoms very well so not sure I will get much help today. Been doing better but did the too much Miralax thing so now I'm paying for that. Party! Cathy
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So, I see my onc tomorrow morning. Apparently CT scan results showed cancer growth, although still isolated to the abdomen/duodenum area. Problem is that it's pushing into my right kidney and causing problems for the kidney to function properly. I'm thinking that's why I'm having darker urine and why my right side has been aching. The nurse practitioner mentioned getting a stent in my kidney. I'm sure I'll also be going off Ibrance & Faslodex and back to chemo. Ugh - so incredibly disappointed.
Anyone know about a kidney stent? I know Dianarose has a nephrostomy tube, although I don't really know what that is. I'm hoping the nurse just means a "regular" stent but I guess I will have to find out tomorrow. Any insight would be greatly appreciated. Thanks all - not been a good day after finding out that bad news.0 -
Oh Sheri, I'm so sorry. That's rotten news. The only stent like that I've heard of is from the kidney to the bladder. I'm getting by without them but my kidneys are borderline. I know we are all hoping that whatever they switch you to kicks the cancer's butt!! My appointment today was just okay. I had a better couple of days but didn't feel so great today. Tried to talk about my sister-in-law and burst into tears. Just one of those days. Had chemo but didn't get any answers about my recurring abdominal pain. Don't see the Doc for another month. Oh well. If it gets bad again they will hear from me!! Love and hugs everyone. Thank goodness summer is here.. I need the sunshine!! Cathy
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Sheri all i know is that the stent might alleviate the pressure you have. i know of an elderly man that had that done, and he is doing great.
Cathy so sorry you are feeling bummed out. This business of curtailing availability to docs is unreal. D's onco does not wanna use the phone, it's email after email, and she and the office will answer when they are good and ready. And all i get to say is yes ma'am. Ridiculous. The fact that you are going through such angst and not have a professional that could validate your pain and uneasiness is a travesty.
Dani is coming along, she came back from her trip with the kids, and right onto the trial hands today. I had to make sure her biopsy goes to the right party for us ot get valid answers, what a circus!
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I know I don't participate much, but I read this thread weekly. Thinking of you all and praying for you daily.
Just finished my third cycle of a Ibrance and had scans...slightly increased thickening in my intestines, spot on liver grew approx 4 mm And a bit more fluid. Ibrance is a bust. I am moving to Abraxane next week. Not super excited that I have now gone through all the anti-hormonals and am headed back to the chair, but I was on Abraxane two years ago and it got me to NED in three months...hopeful it will work that well again. Anyway...just a question about food. With all the thickening, I am having a hard time getting food through my system/keeping it down. Those of you struggling with this, what foods do you eat. There seems to be no rhyme or reason for me on what I tolerate and when. Hoping the Abraxane will work quickly to open things up in there, but until then..what do I eat?
Any advice is welcome! Thank you in advance!
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Hi Mustang - Sorry Ibrance is a bust for you. I just found that it's a bust for me too - bummer! I don't know of specific foods to eat besides soft foods that digest easily (like Greek yogurt, mashed potatoes, etc.) I don't have this issue but I know many have, so I'm sure some suggestions will come along soon. I would also think a lot of fluids would help? I really hope the Abraxane works like it did for you previously- that's encouraging.
Well, good and bad news after seeing the onc this morning. I don't need a stent from kidney to bladder yet. Appears the nurse practitioner jumped the gun and created 24 hours of havoc and stress for me. Also, scan shows problem on my left kidney side. My right side in pelvic area is where my constant ache is. Onc thinks it is probably scar tissue from my surgery. Ibrance & Faslodex is not working based on progression in scan, so next up is Halaven. I'm so disappointed to be going back to IV chemo, losing my hair again, dealing with chemo side effects, etc. Will be 3rd time that I've lost my hair which totally sucks. I had learned to really appreciate my naturally thin hair! What can y'all tell me about Halaven? Would love to hear your insight and experience.
Cathy and momallthetime - hang in there! I'm praying for better days and better news in the days ahead for all of us.
Dianarose- thank you again for all of your PMs regarding stents. I felt much more knowledgeable taking to the oncologist today. I appreciate your help so much!
Hugs to all -
Sheri0 -
Mustang- I try to eat soft foods. No nuts, popcorn etc... plenty of water with food and I eat Cheerios everyday to keep regular. You might want to ask for some Reglan too. I had two blockages that required my stomach to be pumped for almost three days. You don't want that
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Sheri what a headache. So it's nothing to do with the liver, the pain in the right side? Halaven, yep Dani went through it also. I don't think is the worst. I know some gals that started on Halaven in liver mets thread just now, check in. Hope you get to feel better soon.
Mustang hi, the same for Abraxane. Dani has been on it also, strong, but a lot of people if you go to the bone mets and the liver mets threads you will see are on it.
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Hello!! Mustang, so sorry about progression. I agree with everything Dianarose said about food. I also use Miralax 3 to 4 times a week just to make sure everything keeps moving. I usually start my day with an Atkins shake over ice with a little coffee added. Atkins shakes are great because of no added sugar. Not only does it taste good but it always feels like it's coating my g.i. system on its way down. A nutritionist told me that a little coffee is good because it helps to stimulate your intestines. If my stomach is up to it, I will have a little cereal or eggs with toast. When I was at my worst 2 yrs. ago I would heat up mashed potatoes and put an egg on top. I also do well with things like teriyaki chicken and rice--just small portions so I don't get too full. I also use those cups of Kraft mac and cheese. Small portions so I don't over eat. I have something to drink all the time--especially water. Sheri, sorry about the chemo again. Glad you don't have to have the stent. I have a grabbing and pulling sensation on my right side under my rib cage. Sometimes I have to raise my arm up and stretch to get it to quit pulling. Doc says probably scar tissue from my gall bladder removal 14 years ago. The things we didn't know!!! The worst thing for me with Halaven was the neuropathy. Since no two of us react the same, hopefully you won't have that as an issue. My hair did thin but I didn't lose most of it. I always have mixed emotions about all the side effects with chemo. Do I want fewer now (so an easier treatment) while I feel good and put off the really bad stuff as a last ditch effort; or have them throw everything at me now to hopefully really beat the cancer back (but feel really bad in the short term). I also think with every chemo, it leaves some kind of residual problem. Oh what fun we are having!!!! Wishing you all love, Cathy p.s. I add the Miralax to my Atkins shake/coffee combo.
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Southernsurvivor, come visit us at "Halaven - Day One" Thread. It is a newer chemo drug started being used at the end of 2010. I just finished my second round of injection. I think it was Jennifer who said if you can control anemia, it is an easy ride. Not knowing how long I will be on chemo, so when Onc told me the chemo treatment plan, my first request was to have a port back. I am very happy with this decision. After 6 weeks on Halaven, my hair thins out a lot, but I still have it on the head!
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Thanks all - it seems I'm going through these treatments now very quickly. Nothing seems to last for very many months.
Cling, I will definitely join you all on the Havalen - Day One thread. I'm not starting on Halaven until July 20th, as I had a previously planned trip to visit my parents through the 18th that I didn't want to cancel and the doc agreed. I'm going to enjoy my few weeks before chemo! I still have my port from IV chemo in 2014/2015 and I didn't want to get rid of it. I love the port for doing bloodwork, CT scans, and now IV chemo. My veins on my right side are so bad due to so many hospital visits a few years ago. My port causes no pain and is easy to access. Causes a lot less stress for me.0 -
I have a question for those that are having eating problems. I am having severe problems with my stomach....nothing seems to really move through the system even though I am on Reglan and Zofran. I have about 600 calories a day if I am lucky which is scaring me. I will eat so little and then eventually toss up what seems to be 12 hours of the little bits of food I am eating. Nothing has left the stomach it appears.
My question is, do you think the problems with eating are due to ascites (which I have) or do you think a tumor is blocking something in your body? My scans show a thickening in the stomach wall but no tumors, bowels are ok with one small lesion. I do have peritoneal mets. If I understood mechanically what is going on I think it would help me to deal with this issue better. Curious to see why you think you have the eating types of problems.
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Emma- I don't have an answer. I had been eating raw veggies and ran into issues with it . Felt like my stomach was having contractions. Took two days to pass. I now stick to mostly soft foods. Very little meat as it is harder to digest. I have Reglan but stopped taking it awhile back as it made me dizzy and sleepy all the time. I eat small amounts but often. I would guess that due to thickening our passage way for food is narrow. I try to drink a lot when I eat too which sometimes I am not so good at. I have scans on the 13th. Terrified! I want to be on Ibrance for years and always afraid it will fail me.
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Hi Emma,
I'm so sorry you are having these issues. Many of us on this thread have either had or still have these issues with eating too. When I was having problems with nausea and getting sick, my duodenum was infiltrated and eventually ended up 100% blocked. I don't mean to scare you or imply this is happening (as I think it is very, very rare,) I do completely agree with Dianarose that the thickening is probably causing narrowing for the food to be able to travel. Have you done an endoscopy recently? That gave me a clear picture of exactly what was going on in my body.
I would also suggest trying to stick to soft foods and drink protein shakes like Boost or nutritious homemade shakes to see if you can get more calories in your body without making you sick. Also, small meals several times per day. If you could try this for a few days and see if it helps at all.
Please keep us updated on how you are doing. We are here to support one another and share our experiences. Many times I get better 1st hand suggestions from this forum than from my doctors! Take care 💕0 -
Dear Emmapeel1 (Love the name, wonderful memories!) When I developed this issue, I also developed gastroparesis (stomach quits working as it should and doesn't empty). My Dr. explained to me that it could be because the peritoneal mets are blocking the signals that tells your stomach to empty. 4 months of Navelbine worked for me. My system is slower again and I am back on Navelbine. Hope you start feeling better. HUGS, Cathy
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In this trial, Dani is being checked for CA125, now for me it sounds ridiculous, she had an oophorectomy/full Hystero yrs ago, why do they check for this marker. Her regular Onco doesn't. It showed 10 a few wks ago and 9 this week. Could it make any sense? I really would like them to check for the Ca 25.27. I know we have spoken about markers here, and to be honest, they are not a great regulator for her, but if they are doing it, why are they concentrating on Ca125 and not on 25.27?Also re:PET/CT - Onco insist in doing skull base to tight, not full body like she used to have. Is it really harmful at stage IV to have Pet/CT to the full body? How long does it take for radiation to actually harm the body, would it not be worth the benefit of knowing now what's up as opposed to what might be from the repeat Pet/CT, she will be getting it anyway but not to the extremities or to the head, how could that matter?
I wanna ask the current trial doc, but wanna hear your opinion on it.
And Emmapeal i think it would be a good idea for you to ask MO to run some tests to view what's going on inside, they could do it while you are swallowing something, etc...tell MO you need answers, like you said, and then you will know the best way to deal with it.
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