peritoneal carcinomatosis
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Hummingbird--wishing you good luck. Seems like all I can do right now is rest and sleep. Hope you can do the same. Love and hugs. Cathy
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Dear dear belly buddies,
I'm so saddened to hear of all your travails. I was at my lowest in August when I spent three horrible weeks in the hospital mal-nourished and dehydrated. I think I got to that point because for a year I was on drugs (first Ibrance, then taxol) that were completely ineffective in my case. IV Fluids, a blood transfusion, daily draining of the ascites, and TPN, as well as getting the pain under control, helped bring me back to myself. Partial blockages suck big time. I NEVER want to go through that again, and I wish them away from all of you, too.
I am currently in a good place. The Adriamycin is working like a champ. My marker went from 303 to 171 to 118 over the last three months. Instead of a liter a day, my body is only producing about a liter of ascites a week. My feet no longer swell up so badly that I can't wear shoes. I am finally able to eat raw vegetables and recently added raw celery back to my diet without an issue. This week I'm off TPN. If my labs are good and my albumin stays near normal, I may be off TPN permanently. (Oh what a blessing that would be!!!)I've gained back the 25 pounds I lost. Frankly, I liked being back to 118 pounds, which was my college weight. My husband never knew me when I was really slender and thought I was too thin and bony! I was happy at 118, but got scared when my weight went below that and I couldn't seem to keep it steady. I guess I have to make peace with 135 pounds. All the docs get very antsy if my weight drops even a little bit. sigh.
So the kicker is that it turns out that Adriamycin, which is doing such a good job, is extremely cardiotoxic, and they won't let me stay on it after the end of November, which will be the 4th cycle. I have to go for an echo cardiogram and a CT to see where things stand. If my heart is still ok, I think I'll be put on Doxil, which is a "pegylated" form of Adriamycin - same drug, but somehow encapsulated with polyethylene glycol (antifreeze??) so that it's less harmful to the heart. Anyway, I'm hoping my heart's still ok, that I'll get Doxil, and that Doxil will work as well as Adriamycin. That's a lotta hoping...
Right this minute I feel good, I'm eating and peeing and pooping normally (yay!), and have good energy. I'm able to do my work full-time with reasonable concentration, though chemo brain does rear its sneaky little head now and then.
Stephanie, ever since I got out of the hospital, many things that I enjoyed before tasted way too sweet. Like you, I wanted lemon juice or lime juice on everything. Plain water tasted terrible, but I was thirsty all the time. The only unadulterated thing I could drink was grapefruit juice – I guzzled a gallon every couple of days, which was nutsy. Before all this, I couldn't drink more than a 6 ounces or so of any liquid a day. I just never got thirsty and all that hype about drinking 8 glasses of 8 ounces of water a day just made me crazy. Couldn't do it. No way. Peanut butter tasted too sweet. My high-fiber bread, which I loved, tasted too sweet. Some of that has subsided – I'll have to try my bread again. I told my docs about this, and they were surprised. They'd had patients for whom things tasted bitter, but the too sweet was a new one to them. What a lovely thing for us to share!;>)
Rosevalley, glad to hear that your chemo seems to be making life a bit easier for you. I hope the lower dose sits better and still keeps the cancer at bay.
Hummingbird, I'm glad you're out of the hospital (again!) and I hope getting the infusion didn't set you back – that it just sets the cancer back!!
Cathy, I'm sorry you were having a rough time and I hope you're feeling a bit better by now. Chemo can really take it out of you! Did you know that there is a noun, "kakistocracy," which comes from the Greek, "kakos" (bad or evil), that means "Government by the least qualified or worst persons." Learning of this word, a friend quipped, "So kaka comes from the Greek!"
Dianarose, looks like we're echo buddies. What's A/C? Sorry the taxol is beating you up. I hope it's doing the same to the cancer. Taxol and I are not friends. I had an infusion reaction to it, and things went down hill from there. It's definitely a fatigue producer. Hang in there – things do get better!
Love to all of yooz – keep on truckin'!
-Erica0 -
rara avis- you sound great!! Those tumor markers down so low and you can eat celery!?? I am jealous. It must be wonderful. Your ascites even dropped in output! Nothing has effected mine. May it last and may you continue to have such a wonderful response to Doxil. Live on! I love hearing such a great response to chemo story. Hope everyone responds so well to chemo.
Hummingbird how did chemo go for you?
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Thanks Erica! "Kaka" still has me laughing! I needed that! I'm so happy that you are doing so much better--continued success! HUGS Cathy
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Erica, I am so happy to hear from you and to hear you are doing well! That's wonderful!
Cathy, I hope you get more strength to be able to do more. Can your onc lower the dose of the Halaven?
Rosevalley, yes I did get chemo yesterday and then immediately after I got home, the diarrhea started up again. My onc and GI dr. wanted me to go all the way back to the cancer center - during rush hour which would have taken about 3 hours!!!! Well we were just so totally exhausted that we just couldn't do it. I fell asleep instead and was ok all night.
But they still worried that I might dehydrate again, so today they were able to get their satellite building - which is not as bad for us to get to - to give me a long acting shot of the anti diarrhea drug that I was getting in IV form all those days in the hospital. So I got the shot this afternoon and hopefully that will do the trick!
Wishing everyone a good comfortable night.
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Well I got my chemo yesterday and after throwing up getting out of the car and feeling miserable. I got a bag of fluids and navelbine. But the chemo isn't working because my markers came back 327 points higher in a week. Which explains why I am barfing and in pain and miserable. I so wanted a Nice Thanksgiving with the kids but if my markers are climbing this fast my gut is shutting down that fast. Thanksgiving is not going to happen. No eating I can barely eat now. It will only get worse.
My DH needs to come to terms with this situation. I need to pick a date for the DWD and pray they stay down.
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Oh Rosevalley, I am just So sorry to hear that! How I wish so much that you can get through Thanksgiving feeling at least good enough to enjoy some of the holiday. I'm basically in bed today and thinking the same about Thanksgiving. Chemo on Tuesday again like this week and then sick in bed for Thanksgiving. I have family coming and my husband will do the shopping and my two sons will do the cooking. I so want to enjoy it! This really sucks!
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Yesterday my DH and I were talking on the way to the chemo suite about this site. I am proud to contribute to this site. I didn't start it, but Stephanie and I set the tone of being as brutally open and honest about this belly mets journey as we could. When I first got ascites there was hardly anything to read about it on the boards. It was scary and an empty void. There has been a lot of misery but also, treatments that worked, life lived and happiness woven into the journey. Hopefully folks see that when they read. I know I do. I have been heartened and happy to read of successes and cheering those on who struggle. When we can struggle no more, I cheer then too, because we all die and need support. The more we share and learn perhaps the longer we can live our lives despite cancer and belly mets. To all the brave women who step out and talk about mets to their abdomen and all that it entails - thank you. May this site continue long after I am gone and show others the changes in treatment and someday a cure. Peace to each of you.
Hummingbird hang in there. May chemo give you more time. I have spent most of the day in bed too. Hugs and love your way.
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Hummingbird and Rosevalley - I'm so sad to read about your current struggles, as it is very difficult when you have N/V and/or diarrhea all the time. I've had these severe symptoms and it truly does suck! I am so incredibly thankful for this thread that you have both contributed to so honestly, as I couldn't talk to anyone who truly felt like me. My MO has never seen mets to stomach unless it was "everywhere" in the body, and even that has been very rare. Right now, I don't have it anywhere else, so I am like a guinea pig at times when my symptoms pop up. I definitely have learned more from this thread and our various experiences than
from any other source, and I find it humbling that women here are so very sick but will take the energy to update the others and pass along information that can be so helpful.
I pray all our belly mets friends can enjoy the upcoming Thanksgiving holiday with family. It seems like many times that's who we are living for.
Hugs to all,
Sheri0 -
I was diagnosed with mets to bones, lungs and peritoneum in January 2016; 17years after initial diagnosis of ILC. I was stage 2 at that time. I have been reading thru this thread and appreciate all the strong women on this board who are dealing with this. It seems most people--a lot of doctors included don't realize breast cancer does mets to the abd. Initially I had a CT of my abd without contrast to see if I had a hernia because I was thinking about having a tummy tuck. I was having no symptoms. The CT showed moderate ascites in my abd and pelvis. I was having no symptoms other than mild constipation and a feeling of early fullness when I ate. I had lost 50 # over a 5-6 month period, but I was trying. The doctors tried to downplay it. They told me I was "looking for trouble" when I insisted on more tests.
At the time of the laparoscopy, the surgeon told me my entire abdominal cavity was coated in white matter--My bowel was stuck together in several places and even plastered to the abdominal wall in multiple places. Some ligament in the upper abd was 3 x normal size. Fluid from the abd and bx of tissue showed mets related to the breast cancer. Further testing showed the cancer had not invaded any vital organs in my abdomen. No lymph nodes in abd. I have diffuse bone mets. I don't have any bone pain at all. I also have several 3-4 mm spots on my lungs. No lung symptoms either.
I've been on Ibrance/femara since the end of January. It seems to be doing well on the abd mets. Big decrease in areas. My bones and lungs are unchanged. I guess my big question for you guys is--Did yours start out like this? It's still so hard to wrap my head around having all these mets when I don't feel sick. I don't feel like I belong in this group because I'm not having symptoms. But it seems like this is where I am headed. My oncologist said she thought the cancer was slow growing and had probably already mets at the time I was diagnosed and it just took this long to get to the place where it was going to start causing symptoms. Seems like I was probably on the road to having a bowel obstruction before I started on the meds
I guess what I want is for someone to tell me I have X number of good years left before it starts invading other organs and I have to go on stronger chemo. I feel kind of obsessed with all this right now because it was a year ago this time that I started to feel like something was definitely wrong with my and started insisting I have more tests. Sorry this is so long. Again, I really admire all the women on this site and hope I can be as brave as all of you as I continue dow this path. Janet
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Just checking in with the belly group. I haven't posted in a long time, but do check in and read every once in a while. I am sorry so many of you are struggling right now and happy to read some good news here as well. I am still hanging in there - it has been exactly one year since I found NED again after my hospitalization with the progression in my bowels last summer. It was three months of Abraxane that took it all away again. I ended up doing three more months of Abraxane and then switched to Faslodex in March. My markers are all the way down to 4.2. Crazy low. I don't know how long this will last, but I plan to enjoy of every minute of it.
Janet - welcome. I think the fact that I haven't had symptoms in quite some time is why I don't regularly post here either. I do, however, read a ton. I know it is very likely that it will rear its ugly head again and I want to be prepared. These women are so real and they tell it like it is. When I was so ill last summer and unable to keep anything down/bowel issues, I thought I would never achieve NED again. I did.
Thinking of you all. Praying for peace, comfort and healing.
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Rosevalley and Hummingbird, This makes me so bummed out to hear you might miss Thanksgiving. Nothing worse than feeling like you are on the fringes of a good party, feeling sick. I truly hope that this crappy disease takes a hiatus and you feel well enough to enjoy the week with family and friends. And eat!
Mustang, I am much like you that I still feel relatively OK so don't feel like I contribute much. But I do check in to keep up on information and to check up on these wonderful ladies who are struggling so much. I also check in for the positive and inspiring news that each and everyone shares. It helps me like nothing else.
Welcome Janet, I think you will find the same, that this place can help you in good times and bad.
Thanksgiving blessings to you all. I am so grateful for you.
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First mate. HI, I was diagnosed with mets to the peritoneal area in July after 6 months of vague symptoms like yours. This came 14 years after my original diagnosis of IDC. Apparently when breast cancer does migrate to the belly it is usually lobular, I went through every test imaginable ultrasound, endoscopy, gastric emptying, colonoscopy until I went to the ER in July with intractable vomitting and they finally did a CT scan which showed caking on the omentum...........I was immediately scheduled for a hysterectomy and they totally expected Ovarian cancer. They were going to place a port going straight into my belly. well,t he biopsy showed differently. It was a recurrence of my original breast cancer which had metastasized. My silver lining is that like my original cancer it is a grade one and very slow growing. I am on Femara at this point with my next tumor markers in December and scans in 5 months. So dodging a bullet for a while anyway. I don't post here much, but read almost daily. Your situation sounds fairly close to mine. May we both continue to feel reasonably well and have our medications work! My oncologist said that he believes it can be managed for ,which I realize probably doesn't mean 20, but I'll take it. I am a nurse so he has always been very blunt, straight and to the point with me (Even when I didn't particularly want him to)
Stacy
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Hello everyone! I spent the last week mostly on my couch. Thank goodness I have a daughter who will clean for me. Our oldest daughter is coming for Thanksgiving. My goal is to taste a little of everything. Potatoes and gravy---yum! I'm not throwing up but I still have one area of abdominal pain--painful to the touch in the intestines. But this Halaven has so messed up my quality of life that I don't know if I want to continue. From runny eyes to back pain to being dodgy on my feet (an accident looking for a place to happen) and some days I am so fatigued all I want to do is sleep. Should I ask my Dr. to stop or should I carry on...? It makes no sense to me because my labs come back great--no low WBC counts at all. I'm always a little anemic which has gone on for years and makes me think it is from the abdominal mets. You guys are all going through so much that my problem feels ridiculous but I guess I'm not feeling as mentally and emotionally strong right now--just feeling beat up! FIRSTMATE--seems like progression is different for all of us. One of my onc's thinks I was probably stage IV from the beginning in 2002 but I was staged at IIB. I think my cancer is slow growing also but you reach a point where it seems to manifest itself more quickly with each treatment. Enjoy with every fiber of your being that you have no symptoms right now and don't feel guilty about that!!! HUMMINGBIRD and ROSEVALLEY you continually inspire me! I hope so much you are able to enjoy the holidays!! Happy Thanksgiving everyone. LOVE AND HUGS, Cathy
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By the way, when I said I was going to hire someone to clean my house, my daughter stepped up. I still might down the road. I need the help! Cathy
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Longtermsurvivor- Stephanie passed on tonight. She is free at last from pain and cancer. Fly free Stephanie. We will miss you but will feel your presence here for a very long time you taught us all so much. I am sad and happy for her all at once... a mix of emotions.
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- 😢 She was an inspiration to all of us. I am glad she is free if pain and suffering.
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Way to go Stephanie! Finally your fight is over! You taught us all so much--thank you. With love and great respect, Cathy
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Harleyhoney it does seem like our mets are similar. Hope you continue to do well on your med. I am also an RN. Sometimes that's a blessing other times not. I tend to google too much and scare myself instead of going with the flow.
retrocath thanks for the encouragement. I don't know what I would do if I were you dealing with nasty side effects. Quality of life is important to me, but at this time so is life itself. Is there any drug you could try that might not have such bad side effects. Hope you and your onc are able to figure something out.
I hope I can live out my time with the same courage and grace that Stephanie did. I just started on this board a couple of months ago, but it seemed like she fought the good fight and recognized when the time had come to let it be. Janet
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Such a sad day. I will miss Stephanie so much, especially on this thread. But I am relieved that she is at peace now, no longer suffering.
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RIP Stephanie. I've only been on this thread a short time but that's a;; it took to see your wisdom, courage and beauty.
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So very sad to hear about Stephanie's passing. We knew it was coming, but still so difficult to take. She was very kind, compassionate and truly wanted to help us all! Will miss her light and wisdom here. 😥0
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Happy Thanksgiving to my friends with belly mets - may you be able to enjoy this day with family and friends. I know many of us are struggling right now and living our lives is not easy. I personally am so thankful I'm still here. Two years ago I was on a feeding tube and virtually knocking on death's door. I didn't eat for almost 9 months while I was on the feeding tube, missing Thanksgiving & Christmas dinner among all other days. What I do know is that I'm still fighting today and due to 2015 major stomach surgery and God's grace, I will be able to eat at the dinner table today. So, despite this sucky cancer, I'm able to be here with my family and I'm so I'm thankful and grateful for this day. Prayers for all of you who are suffering, may you have some comfort and peace today.
Much love,
Sheri
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Sheri, you are a very big inspiration to me. You give me hope. Thank you for reminding me that although things are very tough for me today, it is very possible that tomorrow will be much better!
Wishing everyone a wonderful Thanksgiving with family and friends! In some way, I hope you can enjoy the day. Iam so very thankful for all of you.
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Hugs to you all - Happy Thanksgiving!!! May your family and friends do the cooking! I am having a clear boost in a wine glass and mashed potatoes. Make do eh? We are masters of making something good out of potentially icky situations.
Cheers!! (((Hugs)))
Cheers to you Stephanie freedom's so sweet isn't it!?
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Saw my Doc yesterday. I was hoping he would say I had enough Halaven and we could move on. NO SUCH LUCK! I did convince him to lower the dose. Hopefully this is my last cycle. It's funny--my blood tests have been really good on Halaven. But I have had constant sore and runny eyes, sore tongue with borderline Thrush, and sore lips. I am so unsteady on my feet and my equilibrium sucks. Neuropathy, muscle spasms in my feet, ankles, legs and up into my rib cage. Fatigue and weakness and then the hair loss....but most of all, the CHEMO BRAIN! Everyone around me has to play "fill in the word." I did that constantly while talking to the Doc yesterday. Well, had the 2nd to last treatment yesterday and woke up with my left eye almost shut so now I can start the "pirate" portion of my treatment....AARGH!! Thanks for letting me vent. May your adventures in chemoland be easier to tolerate. Wrapping you all in a big hug............Cathy
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Oh, Cathy - I'm so sorry for all your SEs! You are a trooper - that Havalen sounds so tough. Please vent away - that is what we are here for and truthfully, I like to hear true experiences that aren't sugar-coated. I can certainly relate to chemo-brain. I sure hope you can rest and relax today. I haven't been out of the house in two days and have loved it!
Rosevalley - were you able to eat at all yesterday and keep it down?
Hummingbird- hope you are feeling better each day!
Here's to a better belly day for all!
Take care,
Sheri0 -
I had just Taxol last week because my white count was low. I have a weird side effect. I literally give off a body odor that smells like a skunk. My husband found what isle Iwas in at the store because he said he could smell me. I have used different soaps including dial odor blocker, lotions and perfumes. No help. Has this happened to any of you? My urine smells like it is straight from the skunk too.
I am so thankful that I was able to eat Thanksgiving dinner with no issues. I have a new appreciation for food. Any swhat to eat to put weight back on
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Diana Rose, I have heard of people saying that they had a "chemical" like smell coming off of them during chemo. Although I've seen posts about it. I don't recall having that on Taxotere. I actually think I may have seen a post on this site somewhere though??
Stacy
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Dianarose - I haven't heard of giving off a pungent smell before. It's amazing to me how our bodies react to chemo so differently. So happy you ate Thanksgiving dinner. You are right - I so appreciate being able to eat now. Don't think I could go through what I did before when on the feeding tube.
How is everyone feeling this week? I know Rosevalley is really struggling with N/V per reading from another thread. My heart goes out to her.
Wanted to "bump" this thread, as I learn so much from you ladies and I don't want it to get buried.
Sheri
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