peritoneal carcinomatosis
Comments
-
Stephanie- I am so sad to hear you wake up with nausea every morning and the pressure from your liver must be very tight. I wish you peace and comfort. Glad you have pain relief and assistance. I very much like what you wrote to Diannarose about not knowing exactly what it's like to lose something specifically but understanding the loss of something we love. Very true, your wisdom amazes me. Hugs your way.
Dianarose- your hair is simply gorgeous. I understand losing it would hurt. There are so many things that we have taken away from us during our trip in cancerland. I am hopeful that Taxol will make you feel better and regain some of your strength and ability to eat. I love my port and I am hopeful once yours heals that you will appreciate the ease of using a port.
Hummingbird- fortitude to you.. it sucks this clinical trial did not work and you had progression. What will your oncologist try next? You have been through so much. I think of you and your Mom going through this together. How's your big sweet baby dog? I bet he brings you comfort.
Retrocath- I did the same as you and buzzed my head. I had hair all over the place in clumps.. all over my robe and clothes. Shedding eevrywhere. It is just now growing back, grey and wavy one inch.
Well the Navelbine is working. I do not have nausea/vomiting but I woke up with such joint pain in my hips that I had to take 2 pain pills to knock it back. The fatigue is the hardest part but I feel alert and good otherwise. Naps are a must. I am happy to be here. We are expecting the storm to beat all come Saturday. I guess it's the end of a typhoon. The winds are supposed to be 80-100mph at the coast and 40-50mph inland. We will get a real soaker.. already had 5+ inches. We have huge wide 60-70ft oak trees around our property and I worry about the branches coming down and the squirrel nests. We have some skinny baby squirrels this years batch. A good strong wind would have them flying. Such sweet little critters I love watching them. Be well as you are able! hugs to all.
0 -
Good morning ladies. I had my first Oncology appointment yesterday after my hysterectomy and gall bladder removal. Path report showed recurrence of my previous breast cancer with of course belly mets. It like last time is a grade I, surgery seems to have taken care of all the symptoms I was having (mainly vomiting and stomach pain) so I escape chemo for now. He started me on Femara. I took this drug for 6 or 7 years after my initial diagnosis and the side effects were definitely there, I especially remember the joint pain. But it's doable. I will be going back to work in 3 weeks. Praying for a good response.
Stephanie. Sauerkraut juice? I've actually read about that. Interested to hear more about it. I love learning about and trying different alternatives. We are just getting the storm in now from up your way.
Hummingbird, it does sound like a weird and exhausting week. I'm sorry to hear that the trial isn't working, but happy that there is no clot.
Dianarose, people do say the dumbest things. One of my friends actually just recently said to me "At least you can say you had a great life" So hard for me sometimes to remember that they have good intentions. I just get so damn pissed off!! Also ports are great! I have really small sucky veins. I did Adriamycin (spelling?) so the port was a God send! I had mine put insame time as my lymph node dissection, however my friend just had hers put in and it was under just twilight sedation and very quick.
Magpie, I just wanted to let you know how much I LOVE your country. I had the opportunity to go there twice for motorcycle rides raising funds for peer support adventures for young breast cancer survivors. I cherish my sisters there and look forward to going back one of these days.
Cathy, so great that you're not throwing up!! That right there is huge and I know it makes you feel so much better!
Erica, I vote yes on the magic wand. Wouldn't that be wonderful.
(((HUGS))) to everyone
Be well,
Stacy
0 -
Well the huge storm was a dud! I feel like I lost a day out of my life getting everything ready for the storm that didn't happen! Had my 3rd infusion on Thursday. Feeling pretty good. I hope to get out of the house today and just enjoy October!! Thinking about all of you. Hope you find something today that makes you smile or laugh-out-loud guffaw! (that's not a word you hear much anymore.) Love and hugs, Cathy
0 -
Stacy, sauerkraut juice restores intestinal health, eases muscle cramps and stops nausea. I hear it's a sure cure for hangovers. I don't drink alcohol, so I haven't tried it for that yet, but do appreciate its healing properties.
Here's something I wrote at bco about sauerkraut and fermented foods earlier today:
https://community.breastcancer.org/forum/8/topics/...
0 -
Does anyone on this thread live near Maine?
Stacey-how bad does the juice taste?
0 -
Hi DianaRose,
I've come to love the taste of sauerkraut juice because it means relief of symptoms.
Plus, in Traditional Chinese Medicine (the basis for acupuncture), the five-element theory links sour flavors with the liver. I enjoy a squeeze of lemon juice on everything!
Stacy, please let me know if you too enjoy the fresh, pro-biotic sauerkraut and fermented foods.
Just curious and sending good healing,
Stephanie in San Francisco Bay Area, California
0 -
Stacey- our daughter is a nurse in California. She lived in Temecula. Where do I find the juice in the grocery store
0 -
Hi Diana Rose,
I'm miles away from your daughter - would be another state, if we were on the east coast.
Don't know about a regular grocery store, but a natural foods market like Whole Foods will have it in the refrigerated section along with other fermented, live, probiotic foods. The canned and processed food is devoid of all those lovely live properties!
I eat the sauerkraut and drain and savor the remaining juice from a jigger glass.
Like I said, sour flavors appeal more and more as my liver goes wacky and sweets are mostly icky now.
Interesting how our tastes change as our bodies do.
Best regards, my belly mets buddies, Stephanie
0 -
THC/CBD oil. I use the Moxie Meds brand 1:1 tincture {Rescue) for acute pain and then follow up for maintenance throughout the day with the 1:4 (Recovery)
0 -
Hello all,
Yikes! I've been away from the computer and boy, do I have catching up to do!
Diana Rose - I'm probably closest to you geographically - I'm in Waltham, MA, in the greater Boston area. When you mentioned Lahey, I thought perhaps you were more local to me, but then I realized that Lahey has branches all over New England. So sorry about your hair - I miss mine a lot, and it was nowhere near as spectacular as yours. I refused to remove what little was left, and went around with these ridiculous hanging threads until they, too, disappeared. No hair, no eyebrows, no eyelashes. ugh. That was taxol's effect. Now, however, on Adriamycin, I have brows and lashes and fuzz on my head again. I also have annoying chin hairs and hair on my belly that pulls and hurts when we change the dressing on the pleurX catheter.Which reminds me, drain buddies, I have 2 questions: 1. how do you protect the drain when taking a shower? and 2. what sort of dressing do you keep on the drain in genera? The way we're doing things, I wouldn't be able to change the dressing by myself, so my husband does the deed.
Hooray, Rosevalley - I'm so glad the Navelbine is working! That's great news.
Stacy – glad you symptoms abated with surgery and wishing you luck on Femara – it gave me two good years – hope it does the same for you!
Cathy – may Halavan do to your cancer what it did to your hair – make it disappear!
It seems that Adriamycin is working for me. My marker went from 303 to 171, the ascites is less, and so is the edema. Now if I could just get off TPN… The worst thing is that while on it, I can't travel. I was supposed to visit my mom in Philly back in August, and wound up in the hospital instead. I won't be able to be away from home overnight until I can ditch the TPN. It's so annoying! Dealing with drains and PICCs is becoming so tedious and boring. Talk about a different life! grrrrrr. Where are the cures, folks? We on this thread are ready and waiting!!!!!
Cheers! (Judy, is that just a Brit expression, or do you down-under folks use it, too?)
-Erica
0 -
Erica, my rare bird, I'm completely worn out!
I want to write in response come morning when I'm fresh awake.
Have had my implanted ascites drain since August 2015, so have many tips to share.
Wishing you and all some very sweet dreams, Stephanie
<I also have annoying chin hairs and hair on my belly that pulls and hurts when we change the dressing on the pleurX catheter.>
<Which reminds me, drain buddies, I have 2 questions: 1. how do you protect the drain when taking a shower? and 2. what sort of dressing do you keep on the drain in genera? The way we're doing things, I wouldn't be able to change the dressing by myself, so my husband does the deed.>
0 -
Erica- Ok This is probably admitting I am ghastly lazy but I pop in the shower with the dressing from the pleurx kit. I don't even cover it. I am profoundly lucky in that in 13 months I have not gotten an allergic reaction to the transparent dressing. I take it off and put a new one on every day. I have never had the dressing come off. I scrub and wash my hair and rinse and dry off. I shower about every 3 days as my skin is painfully dry. I have gotten so used to changing the dressing that I am very quick. I do drain sitting on the couch in the livingroom using the coffee table as my bottle and kit spread out. If you were draining laying down it would be impossible to get the dressing on. I used to get more fluid off laying down but as things progressed I get a liter off sitting up.
When I had my port accessed I covered the whole thing with saran wrap and tape. Since that dressing was only changed once a week and I couldn't afford a compromised dressing. So you can go that route.
I hope you get off the TPN and the treatment makes you feel better. Take care.
0 -
Hi Erica & Rosevalley,
I'm up in the middle of the night for zofran and sauerkraut and here you are!
I don't know about the dressing kit that comes with the pleurx system, because my implanted drain is the Aspira system.
What they suggested really didn't work for me - large gauze bandages under and over the line with a huge tegaderm plastic patch covering the whole thing, so the tegaderm had to be removed for every draining and after every shower. Doing it was a 3 or 4 handed job that I couldn't do it on my own.
Worse, I developed a poison-oak like dermatitis reaction to the tegaderm and adhesives.
I've since downgraded my bandaging system so that a piece of split 2x2 gauze covers the drain line exit site. Then I cover that over with either a second 2x2 held down with paper tape or a 3x3 adhesive bandage (Allewyn).
At shower time, I might cover the area with a tegaderm, but may also just let it get wet. Either way, I promptly remove the covering after showering. I usually leave the area uncovered for a couple hours after the shower. Removing all the adhesive with coconut oil and a warm soapy water rinse is helpful before I recover the area.
The biggest help is what I call my "holster". I cut down the adhesive area of a multipurpose tube holder like those used for bladder catheters to about 1x2" and afix it at the level of my tube exit, just below my belt line. The tube holders are huge, because they are meant to hold bladder catheters to a patient's leg while s/he tosses and turns in bed.
Ugh on the pulled out belly hairs!
Double ugh on relying on others to drain and dress.
Triple ugh on clogged drain lines that require regular flushing to keep open. But that's another story for another day!
Now it's back to sleep time. Go away, far away, nausea.
well wishing and sweet dreams my friends, Stephanie
0 -
went to hospital yesterday to get port put in and change naphostomy tube. They would not do the port because of the kidney infection 😖When I got home the oncologist called and said it was ok right now. Several doctors and herself reviewed all my scans and are all not sure what is really going on. Having another scan on Thursday. I am also being tested for Lyme disease today. It is amazing how Lyme and belly mets mimic each other. It causes paralysis of the digestive system from stomach muscle to intestines causing nothing to move leading to vomiting, blockages etc...
0 -
Oh dear, DianaRose,
What a trying day and now you get to begin again with port and scan.
Fingers crossed that you get a proper diagnosis and a treatment plan that works for you!
warm hi & hug from California, Stephanie
0 -
went to take a shower and realized he gave me a bag without a disconnect! Can't take it off to shower, get a clean urine sample or change the bag! What the hell! Just want to 😭. Cancer center is calling them so now I will end up going back. Good day for a mel
0 -
Dianarose - I just wanted to send you a big hug after such a rotten day. I hope they can resolve the bag issues quickly and the kidney infection clears up. So many frustrating and difficult twists and turns in this journey of ours. Lots of healing wishes and virtual hugs coming your way across the Pacific Ocean
Cheers Judy
0 -
Dianarose, I am so sorry that you have all that going on! Did your bag get corrected when you went back today?
This afternoon, after I met with my onc, I had my first infusion of my new chemo - Halaven (eribulin). I will lose my hair again, for the 4th time. Going to get a new wig this time. I need a different style! Just when I finally got hair back after Taxol. I'm hoping the SE aren't going to be too bad. And in 2 weeks I will be going again to get my ascites drained - hopefully this time they can do it! Last time, about a month ago, the dr. felt it was too risky so it wasn't done. Now the ascites has increased even more, and as most of you understand - it gets pretty uncomfortable.
Wishing everyone comfort.
0 -
Humming bird- sorry you have to lose your hair again😢 I just got a new wig. Red and cur
0 -
Wow, beautiful hair Dianarose. I'm so sorry you have to lose it again. It is so hard to feel crummy and go through all the crud and feel "not yourself" in appearance too. Adding insult to injury......I think we all have had to learn to brush off comments from callous or ignorant people. It gets easier although I still sometimes have an overwhelming urge to respond with a witty comeback. Love the picture! Is that where you live?
Stephanie, you have walked a VERY bumpy road for a long time but show us all how to do so with such grace and compassion. I learn so much from you and gain much hope and peace. I hope you are resting easy and enjoying your little slice of California earth today!
Have a great trip Magpie! Your kids are similar ages to my three and the best times are when we are all together. Melbourne sounds exciting.
Cathy, We had a pretty wet and wild storm here over the weekend! It was nice to hunker down and tinker around the house. Glad to hear you are feeling better on you Tx.
Hummingbird, Damnit all, that is not the news we all wanted to hear either. That is one long piece of bad news. I'm sorry you went through all that trial for nothing. That whole heart episode must have been so scary! I have had some palpitation issues over the years which have caused great anxiety. I hope it has settled down to normal...Also glad there was no blood clot. You are always so positive and such a sweetie, I will be thinking about you as you change Tx and hope there are NO SE's and it is the one that keeps you going for a very long time.
Rosevalley, I am very glad too to hear you are doing well. May it continue on and on!
All of you ladies take care
0 -
Humming bird- the brand of wig I got is Estetica. I got the Becky wig except in red. I really like it and they are not expensive. Can order right on line 👍
0 -
Today marks 12 yrs that I was diagnosed. Going to the casino with Hubby 😁.
Well everything changed again yesterday. Got a call from the oncologist and she said after the tumor meeting she decided she does not want to give chemo until she has a sample to do a sensitivity test. One of the oncologist surgeons said she didn't see a problem with going in laparoscopic to get some tissue samples from my abdomen. I met with the surgeon late yesterday and really liked her. Tomorrow I have a full ct scan and the surgery on Friday morning. She is also going to put my port in and change the naphostomy bag to the right one. Still can't believe he gave me a bag with no disconnect to shower or change the bag and so much tubing I don't know where to put it all. The bag itself comes to the mid of my knee. I am all of a 112 pounds . What the heck!
Hope everyone has a blessed day
0 -
Dianarose, Yeah!!! Have fun at the casino today! Hope you win! Good luck with the scheduled scan and surgery. Thanks for the wig info. I will take a look.
Rosevalley, yes - my big baby, my 140 pound Rottweiler (and he's Not overweight, just Really big!) has always been a big comfort to me. We fostered and then adopted him the year before my initial diagnosis and so he has been by my side many many nights when I'm not feeling well. He's a senior dog now but at times, still acts like a puppy! I love him. My Mom has also had progression and will start Xeloda tomorrow. I worry about her, of course.
Artist, thanks again for coming here and supporting us. One of these days, I have to post on the Liver mets thread. I hope you are doing well.
Hope we can all enjoy the day!!
0 -
Hi Diana Rose,
I hear your caution about one step forward two steps back as your new nephrostomy tube is improper, your diagnosis may be too and your your treatment plan in question. How nerve-racking for you!
Here's a bco post about ports with many descriptions and photographs of members' port style and placement:
https://community.breastcancer.org/forum/8/topics/...
I'll bump that conversation, so it ends up on this forum's first page.
You mentioned being quite thin too.
As I've lost more weight, my port sticks out even more.
It might be worth another conversation with the surgeon to find what's a good choice for you.
May your steps soon be two steps forward and one back. Then break into a happy dance ahead of cancer.
Well wishing for all my belly mets friends, Stephanie
0 -
Has anyone had the chemo sensitivity test and if so how long to get re
0 -
Morning everyone! Hummingbird, I noticed you are starting Halaven. It's been going pretty well for me. It is definitely working on the mets as my abdominal issues are better already. The side effects for me have been weakness and loss of hair. My daughter knits and has been making me hats. I hope it works as well for you as it has for me. So sorry Dianarose you are having so many issues. I just realized that I am coming up on 14 years since initial treatment and 5 since I found out I was stage IV. I am so proud of all of us. We just keep plugging along!! I feel very lucky to still be here. I am getting groceries delivered today. It's so great to live in an area where it's offered. Safeways is coming in about 2 hours and they bring the groceries into my kitchen!! (not that I cook much anymore) Wrapping you all in a BIG HUG!! Cathy
0 -
Cathy, thank you. Had my first Halaven yesterday and I've had a fast pulse and high blood pressure since. They are finally beginning to very slowly come down. Just a few days before, my pressure and pulse were perfect! I am seeing a cardiologist on Monday at my cancer center. Hopefully I won't have a repeat of this on Tuesday when I get Halaven again. Always something! Hoping you continue to have a good success on this drug!
0 -
Thanks Hummingbird, I am doing Ok. I am coming up on next Onc appt and scans soon and have been feeling sensations like I may have progression. But all I can do is wait and see. I try to remember all you girls who have been through way worse and just wait and see and tell myself not to melt down....Wow! A 140 pound dog. What a great buddy he must be! I hope the cardiologist figures out the palps for you, I HATE that sensation. I also hope Xeloda is good to your Mom. So much worry for one woman.
Dianarose, That sounds like a real pain in the ass! Hope your surgeon get you all squared away. Then go enjoy your weekend!
0 -
Got some bad news. My aunt committed suicide. She was in her seventies and physically healthy. She has been taking care of my uncle for years who suffers from Parkinson's. I know there was a note but don't know what it said. So sad😥.
On a positive note I left the casino with 700.00 of their money
0 -
My deepest sympathies on the loss of your aunt Dianarose. It must be terribly difficult being a carer and seeing a loved one deteriorate to a disease like Parkinson's. Virtual hugs being sent to you.
Well done at the casino!! I set a $20-$50 limit and rarely come away with any of their dough, so well done you on getting one up on them!! Also wanted to say sorry for your hair loss - this was by far worse for me than losing my breast when I was first diagnosed. Some people look lovely with no hair ( those with slim pixie faces I think) - I am not one of those 😊
I picked up a dexamethasone mouth wash today for my mouth full of ulcers - $185 !! This was after $135 paid for Xylocaine mouth wash. Today the oncologist gave me a 'me kit' from Afinitor. It had in it mouthwash , toothpaste, toothbrush and QV body wash plus info. I've had to stop the Afinitor until my mouth ulcers get better (still on exemestane) . When the mouth ulcers have healed I will start back on Afinitor at 5mg, rather than 10mg. The breast cancer nurse said if you've had mouth ulcers you shouldn't get them again - thank goodness!!
A question: when you received your Stage IV diagnosis did you continue to work? If so are you still working or how long did you work (full time ) for before giving up? What were your thoughts when considering this? I would love to hear your thoughts on this, thanks, cheers Judy
Ps this photo is of my catch up with my kids ( plus a boyfriend in the green shirt) last weekend
0
