peritoneal carcinomatosis
Comments
-
Dear friends,
Thinking of each of you tonight as I get caught up on all your posts.
Cathy, happy 63rd birthday to you! It's hard to believe you have dealt with breast cancer for 14 years! I admire your ability to keep battling this dreadful disease. So happy you celebrated your b-day for a week!
Hummingbird - so wish for you to get a break! It is difficult when it seems like issue after issue crops up every time we turn around. Hoping you have better results this week.
To Rosevalley, Stephanie, Artistatheart, and allBCO friends suffering with belly mets, I pray for peaceful, comfortable days enjoying our family and friends. We fight so hard for us and them. I don't want to cause heartache for my two sons (ages 20 and 16.) Feel they are too young to lose their Mom.
I just started Ibrance & Letrozole this week. So far I've just been so very tired, but no other symptoms yet. Praying this combination works!
Sheri
0 -
Hi Stephanie,
I heard an astronomer say that some believe it takes a year after we pass into the light to walk across the Milky Way to our destination Many of our BCO friends are on that journey.
Those of us here are to remember, but not try to call you back. So, i will hold you in my heart, think of you when I see the Milky Way and speak your name aloud when you have reached the other side. Peace to you and many manythanks...
0 -
Dear Stephanie,
I'm so sorry that I didn't see your last post until after I posted. You have been such an inspiration and a friend to so many of us! To be honest, I was a lurker for a long time, but your encouraging, truthful, informative posts have been so incredibly helpful.
Thank you for your grace, kindness, and honesty. I want you to know that you have made such a positive impact on me trying to continue to live life with this disease. My heart is truly sad right now.....
Wishing you peace in the days ahead.
Sheri
0 -
Stephanie- I don't even know what to say😢 May God be with you.
0 -
Dearest Stephanie, Anyone you have touched you have made better because of it. THANK YOU! Cathy "All you need is love!"
0 -
Hummingbird- how are you? Are you ok? Did you get your tap -do you feel better? Once that's done you can go back on the blood thinner. I am so sorry to hear about the clot, scary. It is definitely one thing after another especially since you travel this path with your Mom at your side. Seems a bit unfair. Anyway, I was thinking about you and hoping you are doing better. (((Hugs)))
Peace to you Stephanie, may you be pain free and resting comfortably. Much love your way.
0 -
Rosevalley, my paracentesis is scheduled for tomorrow afternoon. I can't wait! It can't come soon enough. My belly is bigger than ever - like an overfilled beach ball. And very hard. I've been so uncomfortable. Yes - not being on the blood thinner for the pulmonary embolism due to the draining has me very worried. I can go back to the thinner on Wednesday. I wish my Mom lived closer, because with all I have going on - I have not been able to be there for her lately and with all she is facing with this disease I feel terrible about that. She goes all alone to her cancer center by car service. She will be getting tattooed on Friday for 10 radiation treatments to close up an open wound from the cancer, that keeps pouring blood. The radiation will hopefully cauterized the wound. Certainly not easy! Thank you for checking up on us. How are you feeling?
Sheri, thank you for your good wishes. Hope you are doing well on Ibrance.
Stephanie, sending love. I hope you are peaceful and comfortable. You are always in my thoughts.
0 -
Hummingbird good luck tomorrow and may it be successful! They took off 4 large containers the first time I had one done. It was a screaming relief. The problem is the fluid comes back in a couple of weeks. So I suffered for 3 months doing serial paracentesis and finally opted for a permanent drain. It's been a Godsend. In the early days of having it, I drained 2 times a week. Instant blessed relief. Then as the cancer picked up I drain every day 800-1000 off daily. Can you imagine how full you would be 7,000ml of fluid in your belly a week!!! Taking it off means I can eat better, nausea drops, fullness drops, pooping is easier, peeing is easier (no gallon of fluid weighing on your bladder). I have had my drain 13 months - same as Stephanie. So if they can't keep the fluid off with chemo ask for a permanent drain.
All the best to you this afternoon! Let us know how you are doing. prayers your way for your Mom too.
0 -
Thank you, Magpiemumma and Rosevalley. I'll have to wait and see if further testing reveals anything.
0 -
Just got home from the paracentesis. I feel so much better. They took off a lot of fluid - 4.5 liters , more than 9 pounds of fluid! I'm only 5 feet tall - so that was so much in my belly!
Rosevalley, thank you for thinking of me and for all the info about the drain. If the fluid comes back within the next few weeks, I will definitely get a permanent drain. I already discussed it while I was getting drained. I'm thinking this will be highly likely as the fluid is now building up quickly. Unless Halaven works. I've had only two infusions so far, so I don't know yet. Wish it would work!
0 -
Thanks Sheri, I actually do not have this particular complication, I just have a couple of friends I like to check up on....I hope you are able to see your sons into middle age! My kids are 22 to 27 and feel like they are still too young to lose me....
Hummingbird, I am so glad you got some relief today and that Halaven better kick in and help you! It is such an unfair situation that you have your Mom to worry about too.
Dearest Stephanie, Please know how many of us here are holding your virtual hand as you go on your journey. You will never be forgotten. You have lived a life of generosity and kindness to us all. My heart breaks.....
0 -
Hummingbird- I just weighed myself without the container and holding the plastic bottle with the fluid. One liter of the pleurx weighs 3 pounds (with the bottle). I always feel better getting the fluid off. I take 7 of these off a week. Once you get used to doing it yourself it's so easy. Instant relief and the supplies come to your house via fedx. I don't know where you live if the weather is snowy and deliveries are hard but I get 2-3 weeks of supplies at a time. Some insurances allow 3 months worth at a time. Getting the surgery is a little uncomfortable and the drain site is tender until it heals. Now I don't even notice it and sleep well and move around like it wasn't there. You can't take a bath after you get one so take hot bubble baths now. That's the only thing I miss. Showering is no problem.
This drain makes ascites tolerable. Also there is a slight risk to getting infection when you have a drain but folks with liver failure (the other population with ascites) seem to get peritonitis more than folks with ascites caused from cancer. My doctor told me that. I seem to bare this out as I have had the drain for 13 months and never have had any issues about infection. Neither did Stephanie who had her drain the same length of time.
I mean sure I wish I didn't have to do this everyday. It would be more comfy if I never had to have all these surgeries and ports, drains and cancer treatments, but I can live and participate in my kids and family life. So I think it is a blessing. Any of you needing to be relieved from ascites don't be afraid of getting an implantable drain! Go to a good surgeon and reputable place and make sure they place it down lower then your waist band on your pants. You don't want the waist band of your pants to irritate the drain site or put pressure on it. Agree on the site before they put it in. Mine is well placed. If you are small and there isn't a lot of room think about where to put it. I was awake during my surgery but felt nothing and it was kind of cool to watch it all done. I couldn't see everything but I watched the liter containers fill up when they got placement done!
My tumor markers went down 65 points from last week. I got my Navelbine yesterday. No N/V yesterday or today. I just have a sore back that is cramping my style... otherwise I am good. I pray you are too. I also pray Stephanie gets her wings today and leaves pain and suffering to fly free. I will miss her very much, but wish her well.
0 -
Stephanie,
I've only been here a few weeks and haven't really posted much, but I will remember my fellow Northern California friend with a smile. May your crossing to the next part of your journey be peaceful.
Stacy
0 -
It's been a rough couple of days. Almost didn't get my first chemo because red counts were so low. Decided to give it to me anyway. Also found out the scan showed a spot on my back, L4 . Explains why my back always hurts. The gave me a shot of Prolia. Yesterday I went for a transfusion, 2 units. When I got up yesterday I felt like I got hit by a train 🚂. Everything hurt. Every muscle and every bone. Does anyone else get Prolia and if so does this happen or is it the chemo?
When you ladies first found out about your tummy mets how many rounds of chemo did it take to feel some sort of improvement? Like the gas, the pain, nausea, pain after each time you eat etc....
I am trying to stay positive but there are days I just want to throw in the towel. Today o go for blood work to see if the infusion helped. The cancer center is a two hour round trip. Gets old after 3 days in a row.
0 -
Hi DianaRose,
It's impossible for anyone to even guess your response to treatment or which (if any) will work for you or whether the unwanted treatment effects outweigh the benefits.
We can guess, I hope your oncologist guesses better than we do, knowing your body and its responses, as well as what drugs might be best for your cancer.
Treating symptoms is called palliative care that supports your health and well-being. There are many tips in this community that are recorded here already. Some of us have had spot responses to troublesome symptoms - nausea, vomiting, pain, reflux, ascites (fluid in the belly).
For information on prolia, ask the bone mets community, at:
https://community.breastcancer.org/forum/8/topics/...
I use some conventional approaches for pain and nausea and, like Rosevalley, have an indwelling drain for ascites (fluid in belly). I also engage many complementary/integrative and holistic approaches to all the symptoms - massage (self and from others, spiritual/energetic work, transformative writing, authentic movement, art therapy, serving others (I'm up early with symptoms today) and where, when and how much I eat. I've engaged these approaches for over 50 years. It would be expensive, futile and crazy making to try to engage them all at once!
Am now about 90# at 5'6" and in my final two weeks of life per hospice. I joined hospice a year ago and this group just a few weeks ago. My hospice team is so supportive and my circle of caring friends and family have made my dying doable.
While all this dying stuff sounds really scary, I'm happy, joyous, free, well cared for and ready to let go of this body, so I can journey into my next great adventure. I've been with my loved ones to say bye for now and love you forever, so there are no loose ends there.
The hospice doctor Byock suggest that the dying and their loved ones say 4 important things: Thank you, I forgive you, please forgive me and I love you. I add a fifth - goodbye for now.
Yes, I'm unconventional in my approach, attitude, cancer and dying. But I am not alone, just unconventional and rare.
This was all earned and learned through many years with active breast cancer (over 25 years); healing from extreme medical trauma; outliving my prognosis so many times (surprising all my caregivers and myself) and having a "good attitude". This last is purely selfish - if I can feel good, I will! I don't pretend to make others happy or defeat my disease or death.
Death from my perspective is an aspect of life. I hope I go on to the next life, but if I don't, this life has been more than sufficient, it's been a blast and I'm so thankful. I don't regret anything now.
Am sending loving kindness and en-courage-ment to all in our little belly mets community, Stephanie
0 -
Friends, I came with symptoms this AM and planned to write about life with with an indwelling drain, but had to respond to Diana Rose. I'm now exhausted again and going back to sleep.
Will hope to write a piece that gives more for those of you considering in-dwelling drains for ascites.
Too faded out now.
I'm in n the massive love halo surrounding our lovely planet and healing all beings too. Hope you feel the love too.
Special loving kindness for you, my belly mets sisters!
Big hugs and love, Stephanie
0 -
Stephanie- thank you so much for writing for me. I know it took all your energy ❤️. I too have the same outlook on death. Although I am not quite ready yet I know when the time comes I will be thankful to be out of this body and ready to move on. You are a beautiful soul Stephanie. Sending you lots of love and peaceful prayers. Dian
0 -
Stephanie good to see you write. I am sure it wiped you out. I definitely feel wiped out. I threw up dinner last night and then this morning several periods of nausea and vomiting. None of my food is digested just coming back. Burping and miserable all last night. Threw up the reglan this morning. I just took a zofran. Hoping for a reprieve. Not a good morning at all. Zofran work quickly... ugh
0 -
Stephanie - thank you for your responses & wisdom. We know it takes all your energy! We do all learn so much from your experience.
Rosevalley - so sorry to hear about your N&V. I know firsthand how absolutely miserable that is and I truly wish you relief! I wanted to ask you if Zofran helps you. It doesn't work for me and have found much better results with Promethazine (25mg tablets.) It seems like I have used several meds for N&V, acid reflux, and for faster digestion, but this one has seemed to stick with me the longest. Praying for a peaceful stomach for you.
Dianarose - I'm so sorry to hear about your back. I know you are ready for some good news - I pray something good is just around the corner for you. To answer one of your questions, I wanted to let you know that for me, chemo never did give me improvement in reducing the ILC tumor infiltration which caused my duodenum to be 100% blocked. Both Mayo Clinic & my oncologist thought it would, which is why I had a J tube for feeding installed in Aug 2014, with the thought that it would be very temporary and I would be able to eat/digest once the chemo shrunk the tumor tissue. Well, 7 months later on chemo with no improvement of the blockage, I had major stomach surgery to move my small intestine to connect to the left side of my stomach to allow me to eat again (completely bypassing the duodenum.) I think my case is very unusual but those stupid ILC mets have a mind of their own! Hope others can share their experiences. I know each of our bodies respond so differently. I will say I was at death's door in March 2015 before my surgery and after a few months recovery from surgery, I have felt A LOT better. My oncologist calls me a walking miracle, and I truly believe it. God is not finished with me yet! So I try to stay positive and live my life as best I can. Keep us updated - I love that we can share information, learn from one another, and encourage each other when going through the really tough circumstances.
Take care all -
Sheri
0 -
Southernsurvivor- the ILC cancer infiltrated my duodenum too! Caused all the food to back up and intractable N/V. No one offered any surgical intervention and I met with a surgeon in Dec 2015. It was suggested I head to hospice. Funny how different places respond and I am 58. I would have welcomed a way to suction out the secretions that backed up causing explosive vomiting. They did allow me IV fluids several times a week and to keep my port accessed Feb 2015. That helped a lot as I couldn't keep enough fluids down. Eating was a joke. I have promethazine but it makes me feel jazzed, jittery and twitchy and I hate the sensation. It stops the vomiting. Zofran disolves under my tongue and that helps, no side effects. I used CBD oil under the tongue too. I live on multiple doses of reglan, except I vomited them today.
Today has been miserable. Multiple episodes of nausea and vomiting. I drained my belly and that started me vomiting. That has never happened before. Water came up, pills - everything. At 1pm my gut finally calmed down. No eating today just a small cup of milk and sips of a Naked Juice smoothie. Pretty tired slept off and on all day. This can't continue or I will be really dehydrated. Wish me luck tomorrow.
Hugs Stephanie. I will miss you so much, but I don't want anymore suffering for you. So with great love and happiness I join everyone here in wishing you wings of freedom and joy. When you are ready to fly.
0 -
Warning: Longer post than originally intended
Rosevalley, oh my - I had the same vomiting and food back-up as you! My gastro kept saying it was "inflammation" in the duodenum as no cancer was found in the biopsies in my 1st two endoscopies and I just needed acid reflux meds. (I have since changed the gastro doctor.) It was so bad. I went to oncology clinic 3 times a week for fluids to keep me hydrated and alive, as I couldn't even keep water down. That was from March to May 2014, when I finally went to Mayo as I was so desperate. Mayo found the cancer in my stomach wall and then did a procedure to insert a stent into my duodenum to open it up to allow me to eat soft foods, said it would last 10 years, and said chemo would shrink the tumors. The shrinking of tumors never happened, not even to this day! Within 2 months of returning from Mayo, I was throwing up again. Did another endoscopy which showed my tissue had completely grown into the stent and I had 100% blockage again.
That is when I was hospitalized. I got the j tube (threaded through duodenum for nutrients to go directly into the small intestine) for liquid feeding in August 2014. I also got a separate gastric outlet tube which was hooked up to a bag 24/7 for gastric juices to escape and I could drink water (which directly came right out the tube. I think this was psychological to allow me to still swallow and drink but I could never quench my thirst as it escaped too fast.) As I said, my feeding tube allowed me to stay alive but my QOL was zero. My Mom went to Mayo with me and then came to live with us to be my primary caretaker to allow my husband to work. She lived with us a year. I was on the feeding tube mostly 24/7 and was doing chemo. I was so incredibly weak. Was in the hospital several times as potassium too low and due to dehydration. In late Feb 2015, I literally was dying and I told my Onc that I couldn't do it anymore. He sent me to a surgical oncologist, who said he thought he could help me eat. My stomach surgery in March 2015 was so hard and extremely painful - I had 28 staples in my stomach and was in the hospital for 3 weeks. (Surgeon initially thought 7-10 days.) Took my stomach a long while to remember how to function again. Started eating tiny portions and was still on the feeding tube for about 6 weeks after surgery. It took me about 4 months to recover from the surgery and my eating became more normal after 6-8 months. (I will say Mayo talked about this surgery briefly when I saw them in 2014 but did not recommend it as they said it was a very hard surgery and thought the chemo would work to shrink the tumors.) As hard as that surgery was, I would not be alive today if I hadn't had it done, so I am immensely thankful to the surgeon. This surgeon said he normally works on pancreatic cancer patients who have had eating blockage for 2-4 weeks, not 11 months which I had.
Rosevalley, I so pray tomorrow is a better day. I don't know if surgery could possibly be an option for you, but wanted you to know my whole experience. My surgeon couldn't take out any of my cancer as, of course, ILC is embedded within the tissue. The surgery has definitely extended my life and the QOL for me. The past year has been good until Xeloda just failed me and I've had to move on. I'm so sorry we share these experiences, as it is incredibly difficult to live when you can't keep any food/liquid down and it is truly miserable. Praying for a peaceful night.
0 -
Please check my post on the middle age ladies thread. Devistating news today
0 -
Oh you guys!!! I can't believe what so many of you have been through and are going through. I had so many of the same symptoms in 2014/15 but I was lucky as Navelbine actually worked really well for me -- my gastroparesis cleared up and my system started working again after only one hospitalization and months of chemo. As you know after a few months of Ibrance/Letrozole combo I started having symptoms again. But NOTHING like what you are going through. After a long talk with my Onc's PA, she made me realize they are only trying to keep the cancer at bay as long as they can keep me comfortable. I also understand they will never try to keep me on any one treatment longer than I'm willing to do it because of Quality of Life issues. The side effects have kicked in and I'm not very comfortable but I decided to do at least 8 treatments (I've done 5) just to make me feel like Halaven had a chance to work. I can be on it as long as it's working or I decide to stop. I know the number of treatments is finite so I'm trying to take advantage of each one I can tolerate. I don't feel good enough to go out on my own or even take a walk but I'm still here! Wrapping you all in love! Cathy Peace and Love Stephanie!
0 -
Dianarose- I went to that site and you posted that your red blood cells are killing themselves and you were getting transfusions. Your oncologist said to get your affairs in order. That would scare anyone. I hope the chemos they gave you provide some relief. Prayers your way. Keep us posted.
0 -
Sending great waves of love, appreciation and healing for all at bco and especially my belly mets sisters.
Though I'm the sickest of us, am at death's doorstep medically speaking, I feel like I may be among those with the highest quality of life.
A recent turn of events has led to a rebirth of my full self. Have dropped the recent problem finding and problem solving approach to life. Have admitted my mind can't do that now.
Underneath is love, joy, fun, appreciation, gratitude, humor. I feel as though my light has emerged from beneath a bushel basket, to get all biblical on you.
I wish you such feelings while you continue to investigate and pursue aggressive treatment options.
This isn't most folks' path, but I'm having a wonderful time of life.
Of course, I'm healed by my Circle of Care, hospice team, spiritual practices of decades and god working through human acts of love, kindness and caring.
I am so grateful!!!
Loving kindness, Stephanie
0 -
Hi Ladies,
Can't write much now but just wanted to say that you all have been the source of a lot of strength to me especially the past few days. I have been in the hospital since right after my paracentesis on Tuesday. Partial Bowel blockages and on top of that, a lot of the 4.5 liters that was drained is already back! I guess my bowels didn't like being freed up!! They were cozier being squashed! I became so sick that I couldn't even stand anymore . I'm scheduled for Monday for a permanent drain.
Stephanie, I think of you always and send my love. Thank you so much for helping me in many ways.
Rosevalley, your info has been a comfort to me and I feel more prepared.
To everyone, you are all wished comfort and a good day.
0 -
Oh Hummingbird! I can't believe you had that kind of reaction to the paracentises! After draining I would feel an empty pulling sensation from the abdominal area. I kept telling the technicians it felt like after floating in all that fluid, my organs were hanging in mid air. It was always very uncomfortable. At night I would have to put a pillow on whatever side I was lying on to support my gut. I did have a partial bowel blockage but not immediately after a paracentises. I'm so sorry Hummingbird. I wish things were so much easier for you. Think of the stories you will have!!!!!! (trying to find humor in all this!) There is so much really bad stuff happening to wonderful women on a couple of sites I go to right now. It becomes very overwhelming!! Wrapping everyone in love and hugs and wishing you a peaceful pain-free day.... Cathy
0 -
Please substitute sister for brother and this is my theme song this morning.
xxx
Oh dear, Hummingbird, it sounds like you've been in hell and I want to lend you my hand to ease some of your distress.
Of course, each of us have different experiences and understandings.
Since you are facing the indwelling drain procedure very soon, you may benefit from my experience, as well as Rosevalley's excellent intro.
If I knew then what I knew now -
I would choose the Aspira system over the Pleurex system that RoseV. has...here's why -
it is based on gravity, not vacuum, so the draw is easier, slower and more gentle.
The drain bags are lightweight and easy to handle.
A liter of fluid weighs 2.2# or one kilogram.
xox
Like RoseV. says, be careful for where it's placed. About 1' of flexible silicone tubing emerges from my drain site. I cover the drain site with a 2" x 2" split unwoven gauze pad, cover that with another 2x2 and tape down with paper tape.
Aspira sent some ridiculously huge tegaderm and 4" x4" gauze. It was ridiculous to handle and the tegaderm gave me terrible contact dermatitis without protecting the area from moisture.
Also, they instructed me to cover the drain line with the tegaderm which meant I needed 3-4 hands to access the end of the line that is covered in a cap.
http://www.myaspira.com/clin_drain_video.php
I quickly learned to leave the drain line hanging free from the small 2x2 gauze covering and using a "catheter line holder" to keep it from dangling. I cut the big, thick tape on that holder (call it my holster) to about 1"x1" to avoid more contact dermatitis.
When I remove any tape from my body, I remove the stick-um from my skin with coconut oil.
For showering, I do cover the area with a tegaderm.
More soon, Stephanie
0 -
Hummingbird this turn of events sucks! I am sorry you are in the hospital but at least they can give you fluids and keep your electrolytes corrected and keep you comfy with IV pain meds. Wonderful you will get the surgery for the drain on Monday. Did they tell you which one? I will be praying for your well being and a successful drain implant on Monday.
I suspect the choice will be driven by surgical experience with a certain product and insurance reimbursement. I watched the Aspira care video and there are things I like about the Aspira. The container is flat and easily stored, can't lose suction as the bulb affords suction. It would be easier to travel and store then the pleurx bottles which are cumbersome to store and if the bottle loses suction the whole thing has to be thrown out. Pleurx kits are 158.00 a piece and I bet the Aspira ones are much less to manufacture and ship. The catheters and dressings look very similar. The connection between the implantable catheter and the bag is very different. It bothers me that there is no cap to protect the end of the implantable catheter under the dressing with the Aspira. I would think it would be easy to get microbes in there. I also didn't like how they use it without gloves, lay it open on the table and clean the end with alcohol and no gloves. Contamination could be a problem.
The Pleurx kit has sterile/ clean gloves to use when you work with the end of the catheter. Granted most of the time the gloves are wadded up in a clear ball and you contaminate them trying to figure out where the opening is. The vacuum portion of the bottle does cause some discomfort from the suction, though not always. The good side to a vacuum container is you don't need gravity or a place lower to put the bag for it to drain. Trying to travel or go anywhere with a Pleurx kit is a hassle as they are rigid plastic containers and large. Each system has it's up side and down side. Both look easy to use and are made by reputable companies. I know nothing of the infection rate or failure rate of either system so I can't comment on that. The good news is Stephanie had her Aspira drain system for 14 months without issue. I have had the Pleurx system for 14 months as well, no issues, infection or problems. So there are 2 malignant ascites patients with similar presentations and 2 different products and both products worked to relieve the ascites. Yay for choices. So what ever system your insurance company or surgeon places will work. Blessings to you all.
0 -
Thinking of you all today as everyday and hope that comfort and relief is brought to each and every one of you...Hummingbird I hope you are sprung form the hospital soon and the drain brings about a new lovely QOL.
0
