peritoneal carcinomatosis
Comments
-
Nap - I agree 100% with Dianarose. MO should give you something to control the nausea. Also, did MO rule out any blockages? Important for them to know exactly what they are dealing with and treat appropriately. Belly mets can be tricky and mine were quite aggressive, so good to be right on top of it.
Mirka80 - know that chemo can fight back these stubborn belly mets and Xeloda is a good one.
Retro (Cathy) - how encouraging for you that this woman is looking out for treatments for you. I love that! Keep us updated. Also, I don’t usually have heartburn but I did the other day. Felt like my throat and esophagus was burning. I’ll have to keep some OTC products nearby. Is Doxil on your radar? I’m similar to you that I have gone through a plethora of treatments.
DR (Dianarose) - welcome back! Hope both kidney infections are gone very soon. Happy that Xeloda continues working for you. 😀
Milwmama and Sadie - 👋 hello!
0 -
Dianarose, I am also concerned, thus the second opinion.
Southernsurvivor, no blockages. They were crushing my ureters so the tubes were installed. The nausea, etc, didn't start until I started the new med.
Retrocath, it sure is nice to know there might be people looking out for us when we don't even know it, and so glad to hear she had you in mind. Sometimes I worry it is easy to just write us off. Clearly not,
0 -
Retrocath thanks for reply. Currently I dont know if she tried Afinitor before she was dx stage IV. She was on taxol but only one infusion. Then switch to faslodex and doing well for 3 years. MO thinks that Xeloda will be without long success but the same feeling had about faslodex
so we will try as my mom wants something easy. There are days when she wants no treatment , she has no more power to face some changes....did you loose hair during afinitor?
You are all amazing how you fight with this disease, i am so scary sometimes and hopeless but have to be strong for her. My mom is the best person i ever met. It is not fair.....0 -
Dear Mirka80, No I haven't lost my hair with Afinitor. At this point, it's the least of our worries. LOL Hope Xeloda kicks cancer's butt for your Mom. So glad you have such a great relationship with your Mom. I know how painful this is for you but know you are making her life easier and you will forever know that you did everything you could to help her. HUGS, Cathy
0 -
Hi all, Still waiting for the iron to kick in. Tired of feeling tired. I haven't had any complete episodes since I started taking a higher dose of Afinitor. I have a friend in Houston who just bought a huge mansion (home prices are down in some areas). Her home looks like the perfect vacation spot. She invited my husband and I to come stay. We are going for a weekend and then going to New Orleans for a few days. We are going in less than 3 weeks. I have learned my lesson. If you feel good enough to do something, you had better do it now!!! My husband has been jealous ever since I went to New Orleans without him. I had such a blast with my daughter that I can't imagine this trip being better! LOL I'm looking for tours where we get to ride. Should be fun. By the way, my friend's husband is a doctor so I will have a "doctor on call." lol He lost is 1st wife to the same kind of cancer so he knows what I'm dealing with. Nice guy!! So now I don't see my dr. again until after I get back. Maybe a good thing to think about something else for awhile. Love, Cathy
0 -
Yesterday my day started off bad but ended with some positive. When I got to the cancer center (an hour and 15 minute drive) I took my jacket off to discover my naphostomy tube had come disconnected and I was soaked with urine. Then she checked the red lumps under my arm pit and said it could very well be mets. Have to have an ultrasound later this month and probably a biopsy. Left there in a bad state of mind. Later they called to tell me my tumor marker had dropped to 48 😄. That made my day so much better. Pray madam x continues her good work.
0 -
Dianarose, that is just adding insult to injury, so sorry! Hopefully the TMs are reflective of reality and the bumps are....just bump. Since the day I started exemestane I can’t keep food down, getting IV fluids now. They did brain scan, clear, now they are going to do stomach tests. I think the timing with exemestane is suspicious.
So just like your arm pit bumps, they don’t want to assume anything. It is stressful mentally & physically but we don’t want them to miss anything either. Oh for the days of uneventful boring health, huh!
Hugs, Karen
0 -
Hi all -
Love thoselower TMs, Dianarose! Those red bumps are suspicious but maybe not suspicious for cancer. Xeloda is doing a great job! 🎉
Nap - does appear to be awfully coincidental that this all started when you began exemestane. Hope they figure it out soon. Wonder if you didn’t take this for a few days if you would see a difference with the nausea. Is that a possibility to do that?
Cathy - has iron kicked in yet? Good for you for planning an awesome trip! You are right that we need to take the opportunities for fun when we can. No time like the present. I’m actually leaving for a short trip to Seattle next Thursday. It is my aunt’s 80th Birthday and her daughter (my cousin) is throwing a nice family party. My brother and several cousins and nephew’s live there, so I’m going! When I get back it will be crazy. I have one son graduating from college in May and one son graduating from high school in June. Lots of family coming in. Honestly, it’s more stress than I usually have/want in a short period. Doing senior pics, sending announcements, planning dinners, getting clothes to wear, etc, etc. trying to take it one day at a time.
Hang in there everyone. Saying prayers for y’all. 💕
0 -
Southernsurvivor, your impending activities sound wonderful, albeit somewhat stressful. At least the stress is for good stuff that will bring much joy. I have a trip in a month to Calif and a riding trip to Tenn in June. If I can't get myself straightened out, both are in jeopardy which would break my heart. Yes we have to do what we can for as long as we can!
Every single time I communicate with my onc I keep hammering the suspicious timing and the new med and ask if the dosage can be reduced to allow my body to adjust. My doctors all seem to think I can just power thru stuff while I adjust cuz I am “one tough lady". Yes I really am (we all are and do we actually have a choice?) but I am not a machine. If we find meds to help relieve the naus/vom then good but if not, something is going to have to give...and soon! So relieved thebrain mri proved I do in fact still have one and it is devoid of mets, yay! But they did mention something about a hamster sleeping in a wheel up there
It's funny how I am fantasizing about foods now. Even the gross burgers on tv look delish to me, lol.
Take care all!
0 -
Hello All! Dianarose, sending lots of love and hope the armpit stuff isn't cancer. So glad about the TM drop. Cheers!! Nap, I had same issues with Xeloda. Doc was sure it wasn't that so we continued on with me taking unnecessary shots to my abdomen, etc. It took awhile of being off of it before my symptoms cleared up. Our Docs should not expect us to white knuckle everything but they do. The attitude is" better than having cancer" but I don't think so. If the treatments make you miserable, what kind of life is that? Sheri, so glad you are making that trip to Seattle. Hope the weather is beautiful for you. With everything going on, make sure you get time to relax, put your feet up, take a nap. Do what you need to do. Let someone help and save your strength for the things that matter...being present for your children. I've been booking tours for my husband and I in New Orleans. I found tours that will pick us up at our hotel. How spoiled is that?? We also hope to find the time to go through the WWII museum located just outside of the French Quarter. Hoping to take the St. Charles trolley through the Garden District too. 2 weeks now. I'm very excited. I just realized this is the first day in forever I haven't felt like I was in a bit of a fog and wanted to take a nap. Maybe iron is finally kicking in. Nurses told me it can take a couple of weeks or so. I'm right on schedule!! lol I almost hated to say yes to my hubby about this trip but he works so hard (partly to make sure I have great insurance) and he needed the vacation so bad. I haven't had an episode in a couple of weeks or more. Higher dose of Afinitor must be working. I also have the heavy duty meds in case I need them. I'm not going to worry. I'm just going to go make memories with my wonderful husband. Splurging a little to get comfortable walking shoes. Have one new pair of sandals and love my Skechers. Fun buying clothes for a trip. I thought about taking my walker but too hard to take on planes. I don't trust them to not throw it around. I have a DRIVE bright red rollator for tall people. Cost about $200 a couple of years ago. I don't need it a lot but when I do, I'm so glad I have it. I'm taking a really nice cane with a wrist strap just for added support. My friend I'm seeing in Houston is originally from Iran. I love her so much and only get to see her now every couple of years. She would have come to me but then we wouldn't have the trip to New Orleans. Love you all. Hoping everyone is having a remarkable day! Cathy
0 -
retrocath, I took that St. Charles street garden tour about ten years ago and still remember it as an enchanting area. New Orleans is so unusual and full of character, I love it Your suggestions for travel/activity are great. We need to remind ourselves that we just can't pull the whole load any more. I still find it hard to admit, but with a few talks with ourselves, we adjust 💕
0 -
Nice to hear about everyone's travel plans. I'm off for a British Isles cruise just under six weeks. (Sorry if I have said this already. Never remember which thread I am posting on!) I am not typically someone who spends on vacations so this is a real splurge. I keep vacillating between being excited and getting stressed by how much it is costing. But, as others have said, we need to do things when we can. We never know when things will go sideways.
Cheers. Pat
0 -
Sadiesservant, the cruise sounds amazing. I can only speak for myself but these three remaining brain cells are barely hanging on. I hear things and pay attention and poof...gone! So if you mentioned it or not, it is worth repeating and please remind us beforehand.
I look forward to taking the trips vicariously and hope you will allshare them as they happen!
Take care,
0 -
I wanted to drop in to say I’m thinking of y’all tonight. This weekend as I was stressing about all the upcoming celebrations/graduations in my life, I was reminded by a good friend that a few years ago the two of us were quite distraught about the fact that I may not live to see these celebrations. I am so thankful and blessed that I’m still here! I need to remind myself sometimes of the bigger picture. 😀
Love hearing about all of our upcoming adventures. Fun things to talk about besides cancer.
Cathy, one thing as you are booking tours, have you thought about taking a food tour in NO? I have done that on my two last trips: one to NYC and one to Charleston, SC. Both were so wonderful and in fact, I thought that from now on a food tour is one of the things that I would do on every vacation. So worth it and truly the highlight of both vacations.
Sadie, a cruise sounds fantastic! My husband and I went on a cruise for our honeymoon and absolutely loved it, but we haven’t gone on another in 25 years. Life got in the way, I guess. That should be on my bucket list to do.
Nap, how is the N/V? Hope you are feeling better.
Waving 👋 to all. Hang in there, gals. Hugs to each of you tonight!
0 -
Hi all! OH man.....I've been feeling so much better lately and then had a bad few days. Started with constipation and then yesterday woke up with the start of an episode. Miserable day. I need to be more careful what I eat and choose easily digestible foods. Most of the time I try to be pretty good but I've been cheating a bit. I haven't been to a nutritionist in awhile so I need to reeducate myself. I'm having an Atkins shake over ice this morning with a hint of coffee. Hope you all are doing okay! I've been having some fun buying a few new clothes for the trip. Some of my summer clothes are now a bit big on me so I thought this would be the time to buy a few new things. I just bought some of the Melissa McCarthy line on Ebay. It's the only way I can afford her clothes. I love stretch crop pants that are like leggings with long tunic tops. I'm having trouble finding that length of pant in a legging. Fun to look but I'm running out of time. I got lulled into a false sense of security I was feeling so well. Now I'm worried about my trip....Gotta go....gotta do this. I'm looking forward to a wonderful trip with my husband. What can all of you safely eat? I need some ideas! HUGS, Cathy
0 -
Hi Cathy, sorry to hear about this most recent episode. Personally, due to my major stomach surgery to bypass my blocked duodenum, I haven’t had problems with eating any certain foods. Before that, when Mayo placed a stent in my duodenum to open it up, they said to have a soft food diet. Easily digestible foods, such as mashed potatoes, and then you could also juice foods, such as fresh berry shake and add banana and spinach, to get those foods down. They also said to drink protein shakes - homemade - or drink Ensure. I got so sick of Ensure, not sure when I can drink those again. Hope you are feeling better today. 💕
0 -
Thanks Sheri. I've been eating the mashed potatoes you buy frozen at Trader Joe's. Really good!! I like to put an egg on top for the protein. I think my blender which is right inside a cabinet is going to have to come out and play again. I just got so tired of drinking my meals but I'm afraid I'm heading back to that. Finding food I can eat in :New Orleans should be interesting. Lots of chowder, I guess. My system feels sluggish today....hope it's not gearing up for another episode. Not ready!! Sorry, I'm all over the place with my post. Brain is swirling. I'm sure this will be my last trip for a vacation except hopefully go back to Boise one more time. My sister is there. She's 9 years older than me with diabetes but is doing amazingly well. My Dad lived to be 98 and I think if any of us could do it, it would be my sister, Ginny. I'm the youngest of 9. Four of us have passed now...all with cancer. I find that interesting. All (except for me) had some form of lymphoma. I had one Aunt who in her 90's developed breast cancer. I also have some uterine cancer in my family. Glad to have you all in my life. Makes this so much better to have people to talk to who truly understand. HUGS, Cathy
0 -
Hi all! Thanks for the food and eating suggestions. Please share any more that come to mind!
My N/V issues are resolved, thankfully. But still lots of discomfort and generally just feeling really crappy. Now I am constipated (sorry) so that is probably part of it. Good grief, is this how it is going to be now - always something? My qol has taken a serious nosedive. I sure hope it is temporary. Watching life go by from my couch is no fun. I am heartened by hearing your plans and how you have sorted past the various landmines. All of you give me hope 💕
0 -
hi all
I wanted to send you all a huge hug.
I apreciate all the information you ladies share here.
I have been struggling with my oncologist too.
Hopping I get a new one soon. My family Dr sent a referral for another one who I heard is very good at a different hospital.
I just wish we all could have good doctors when we need them. Seems random some of us get the ones who look at us as just #?
I managed to convince my gynecologist to do a surgery for me to remove my larger mass and also my 2 ovaries. But now I am scare of taking the ovaries out. I read so much on what it ll be like once the ovaries are gone
I am not so confused. Like I feel trap
Anyway hope you all have a good night
0 -
Hello Lovely Ladies
I am so very lucky to find this wonderful forum with your supportive, informative and inspiring stories. Thank you!
My name is Jane and I live in Queensland, Australia. In late November 2016 my bone mets was Dx followed by peritoneal mets Dx in March 2017 during surgery for bowel obstruction. Apparently both my bone and peritoneal mets are ‘very extensive’. My treatment info below.
The past twelve months have been the ‘roller coaster ride’ we are all living with. Lots of ‘episodes’ as Cathy very aptly refers.....ones we can all do without!!!
I was advised from the outset of the PC Dx to ONLY eat a low fibre/residual diet. I call it my ‘nutrition free’ diet....no skins, no stalks, no seeds, no nuts. Therefore no berries, spinach, tomatoes, dried fruit etc.... I find that if I do ‘stray’ (be naughty!) I ‘pay the price’ with ‘an episode’, often ending up in the ER. Not worth being ‘naughty’. Luckily I love eggs...!
I used to be extremely active.......now I am extremely inactive..! Most days are spent ‘laying about’. I am fatigued the majority of the time despite trying to stay ‘upright’, having regular acupuncture and taking vitamins.
At least I am still ‘on the right side of the grass’ as I say often. Hope it remains that way for a while yet...
Fortunately I have the most wonderfull medical team, GP, MO, Palliative Care Dr etc. Best of all my most divine and devoted DH has been truly amazing! I am so very blessed!
I thank you for your friendship and taking away ‘the loneliness’ of a PC mets Dx.
Big hugs, Jane
P.S. Enerva, I do not have my ovaries and have been fine. J
0 -
Enerva, I also had my ovaries prophylactically removed years ago and no issues. It is oneless source of estrogen for those us who are ER+.
Welcome Sandseasun Jane! I agree this group is golden and am newer to this group as well. It is a less common form and great to have this connection.
0 -
YOU GUYS JUST MADE ME SMILE TODAY! Thank you!!! If we all have to be members of this club, at least we have each other and that makes it so much better. LOVE AND HUGS, Cathy
0 -
Morning all. Two treatments into Halaven and it's been interesting. I have constipation so I take laxatives, my throat is sore, I have a sore on the left side of my tongue, my appetite is nonexistent and I am ALWAYS tired.
I'm not sure but think it has given me some relief from abdominal pain other than from bowel issues. I am in day 4 from treatment so hopefully it is better after today. I then have a break until May 3. Hoping to get Keytruda during that treatment but my insurance has denied twice my Dr request for it. Bastards. We are working through the manufacturer now.
Weather is FINALLY getting nice in Wisconsin, and I'm headed to Florida for a week. Lol. I need sun, and lots of it.
Have needed supplemental magnesium, so my short visits are longer in the chair. Oh well, better than six hours 👍 WB Counts tanked as well. Went from 6.1 with neulasta to 2.0 and no neulasta, in one week. Yikes. Boo.
I've been at this cancer thing almost nonstop for two and a half years. I sure would like a break of a couple years. 😁
0 -
Milwmama- sorry about you side effects . Hopefully your body will adjust soon.
I’m with you on Thursday sunshine topic. Still very cold here I Maine. Heading for Bermuda in 13 days. Yes, I am counting the days!
It will be 14 Years in October that I’ve been doing this cancer crap. I get it
0 -
Looking for any insights into the Abemaciclb and faslodex treatment. I started yesterday with the A pills. and I am an official walking zombie who vomits a lot.
Will I get used to this slurring my words, mishearing what others say and tingling in my hands and feet. I am on 400 mg total - 1 in morning, 1 at night.
I want to make these drugs work, When should I eat? What should I eat?
All insights are appreciated.
0 -
milwmama and twylamira, I can’t lend any insight into your se’s, but yeah all this sure takes a toll. Here’s hoping you catch a break soon for some nice uneventful time without such extreme se’s!
Certainly the anticipation of the fun trips many have planned will help!
Have a nice evening everyone and take care!0 -
twala-Not on your combo but, I totally get the walking zombie, when I can walk. No vomiting tho. I am finally starting to feel somewhat okay after day 4. Still have a sore throat but it seems better. Constipation seems to be subsiding as well. Body fatigue still a problem.
I am going to take protein shakes to TRY to keep some stamina and energy. I will do whatever it takes to be human
Florida is 3 days away. I need sunshine.
0 -
Ok...nosy rosy here!
I'm curious as to whether those of you whose PC started as a "thickening" of the peritoneum (anterior upper abdomen specifically) could "feel" the thickening from the outside as it progressed/got larger? As maybe an area of firmness compared to the surrounding area?0 -
ARTEXASQT, I was actually wondering now if that is what I am experiencing. I think thickening and pressure/pain, but I never know if these things are for real or I am trying to create connections. With your question, now I am thinking they might really be related.
0 -
I couldn’t feel the thickening but I had pain under my ribs, likely from the thickening pressing on the liver
0
