peritoneal carcinomatosis
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Rose Valley,
Medicare and most medical insurance covers cost of Aspira bags, it's not an out-of-pocket expense for me.
Aspira system comes with replaceble cap that are changed after each use!
It's not an open tube.
Also, the cap is on top of a 1-way valve, so nothing gets in without a very special adapter. Long story & I must nap.
I wash my hands and the nurse uses sterile gloves to access my Aspira system.
People who drain it into the toilet use latex gloves, but they won't catch my cancer that way.
All love, Stephanie
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During the video I did not see her replace the cap so thanks for the clarification Stephanie. Both aspira and pleurx are covered by insurance and both use one way valves. Any catheter one way or not can get contaminated, which is why both systems use alcohol, sterile gloves and dressings and clear adhesive dressings. The joining systems are different. When I went in for my drain no one mentioned aspira as an option. I suspect it is because insurance companies negotiate money off a certain product and that determines whether or not the patient gets offered pleurx or aspira. That's just a guess and I don't know that for certain. Same deal about using in network hospitals and in network doctors lower prices for the insurance company. I know if you traveled a lot the aspira system would pack flatter and be easier to take along.
I have a splitting headache and body aches. We got a weather system in and it's raining and this chemo is beating me up. But No puking!! Yay! Of course all I have eaten is a cheese stick and tea.
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I was told by interventional radiologist at local hospital that he preferred the aspira system to pleurex, so he chose for me. I'm grateful it's worked out so well for me!
I had it installed with mostly local anesthesia, but a tiny bit of happy juice. Some patients prefer the full anesthesia like what's used for a colonoscopy - conscious sedation, I think it's called.
It was an outpatient procedure in and out in a day for me, but because our sweet hummingbird is inpatient, she'll probably be wheeled in for it.
The risk of infection with my system isn't due to what comes in the line, but where the line itself inserts into the body. I change the small dressing over the drain site twice a week, giving it a good clean to the area and removing any adhesive from the area to prevent dermatitis or infection at the exit site. It pretty much has sealed around the drain line/tubing.
Coconut oil takes off the adhesive, then I go over the area with a clean cloth with warm soapy water and a rinse of warm water.
A weird thing is that along the formerly smooth inner line is a bunch of ridgy bumps. The inside part of the line is like a French drain used in gardening - opening along the sides of the tube. But the openings might be a little clogged now?
Really wasted today, but wanted to reply to some bco posts. The young woman with disability questions tugged at me.
So tired, just exhausted. Funny, hard to characterize as physical pain, but every part of me inside and outside just aches.
Funny, fun and loving kindness too, love, Stephanie
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Hi
You are all so caring and thoughtful. I will read through all the info tonight and tomorrow. I believe on Monday, I will be getting a TENCKHOFF drain. I have to read more about it.
I was terribly sick again today for a few hours even being in the hospital. Hopefully things settle down.
Again - I so appreciate all I learn from you, and all the good wishes.
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Hummingbird,
Oh no - I'm so sorry you are in the hospital - hate that for you. It sounds like a more permanent drain is needed and glad both Rosevalley and Stephanie have had good experiences with their drainage "systems." I do hope your drain insertion will alleviate your pain and discomfort. Praying for you tonight.
Hugs to all,
Sheri
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Dietary changes and concerns:
For many months the daily, bloody ascites ran heavy 1100-1300 ml/cc daily. Now it's 600-700 ml/cc daily and my belly is smaller - I don't know why, I'm skinnier than ever at 90# and 5'6", maybe the ascites are shrinking too? Or my body just can't spare the energy to produce the ascites? Or my liver has healed (I don't think so)? The aching, bruised feeling of my belly is tolerable now.
I think my diet changes are more due to liver than ascites, but! I stopped eating sweet food about 2 years ago when the ascites first showed up. I craved sour everything - yogurt, sauerkraut, live pickles, probiotic drinks, lemon on/with everything - sour. I could eat salty food between 8 AM and 1 PM, but if I ate any later in the day, I developed painful cotton mouth that peaked between 10 PM and 8 AM. That mouth was more painful than my belly most of the time and woke me often.
Over the past two weeks, my belly and the ascites have shrunk and my interest in sour food has too. I still like a little salty food, but nighttime cotton mouth is better. Not all better, just not as painful.
Some sweet food is okay. Instead of 90% dark chocolate, 80% or even 72% tastes good.
I crave coconut water which is sweet, hydrating and restores electrolytes. For many months it was cloyingly sweet.
Food timing is essential. I need to eat something nourishing before draining, as my blood pressure drops from low to very low and I nap. I still wake hungry, but since I've been draining less, I'm not so ravenously hungry. I try to have something with complex carbs and protein to eat before draining and after post draining nap. Otherwise, I get really overcome with jitters.
But, unlike Rosevally and others, I don't have GI tract blockage!
Okay, really gotta nap again.Have been awake 90 minutes and am fading out.
Hope some of this is helpful to current or future readers.
All best healing wishes, Stephanie
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Tenkhoff drain is what I wondered they were going to produce, or maybe it came first I don't know. There doesn't seem to be any bags or bottles with this system. You drain into a cylinder what ever amount the doctor tells you to safely remove. Interesting because you will stop it at a certain amount. The dressing kits are separate. So it's totally gravity based I guess. I can see good things to that and bad, but I love the idea of cheaper and no bags or bottles. Less trash and ecofriendly while still doing the job! Hummingbird tell us all about it when you get it and start to use it.
You would have to be careful about spilling since it's open. You will have to hold the catheter steady in the cylinder and can't just relax while it drains, but draining is pretty quick. It has a cool little valve. Interesting product. The gentle pull of gravity will take the fluid out of the abdomen so there should be no cramping since there is no vacuum.
See what a great site this is!!??? I learn something every day on BCO. I didn't even know a Tenkhoff ascites system existed and now I do. Thank you Hummingbird. May your surgery go great and happy draining. You will love getting the fluid off. Now when folks visit this thread they will have information about 3 different systems and personal experience to read. It's wonderful that folks share their experience and knowledge on these sites because it helps so many navigate the cancerland roads!
I hope you feel better Hummingbird, prayers and love to you. I hope Dianarose feels better after the blood transfusion and things are not as dire as they sounded. May everyone here on Belly mets be pain free, N/V free and at peace. (((Hugs)))
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Love for you, Hummingbird...and for all our belly mets sisters!
Rosevalley, I'm turning in for the night, but wanted to ask how you cover your drain site from your belly? Did Pleurx send you home with the 4 x 4 gauze pads and a 6 x 8 tegaderm? How has your skin held up? Do you have to cover the cap end or can you leave it free? If the former, do you need 3-4 hands to manage it? If the latter, how do you keep it from flopping around? How long is the drain tube after it leaves your body?
Thanks in advance for all we've shared here, Rosevalley. I joined bco last November to meet you and to join the D&D topic. What a joy you are in my life - you've taught me so much about love & life, Stephanie
All details on what works for you are appreciated.
I'm not switching horses in the middle of the stream, but we are accumulating stories (the plural of anecdotes is not data, but in our rare situations you and I have a wealth of life experience.
Hummingbird, I never heard of the Tenkhoff system either and hope it is an improvement on the old systems and is successful for relieving your symptoms!
Sweetest of dreams, my friends, Stephanie
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Stephanie- The drain dressing kits come inside each bottle as a unit. Since I open it every day I just change the dressing every day. The clear adhesive dressing doesn't bother me after 14 months of changing it I never have had a reaction. Thank goodness for that. I curl the drain under the 4x4 gauze pads on top of the sponge dressing. It's more comfy and if I lay on my left side it doesn't hurt my skin.
Another crappy day.. terrible headache and body aches and I just vomited up dinner. Half a salmon patty and a small potato. Oh well. Food is just not going down. Well it's not going down easily.. I poop TMI so something gets through. Back to milk, boost and yogurt. Could be worse.
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I do not have mets but as someone who had Stage 3 ILC I know it is forever possible, and it is what scares me the most. So a huge Thank you for sharing this info and especially to you Stephanie for taking time to do so when you are so exhausted, you really are an inspiration and I think of you often throughout my day.....
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Hummingbird- I hope your drain placement went well and you are home recovering. Prayers your way for healing and relief.
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Rosevalley, I got home last night from the hospital, very weak and wiped out. The drain placement went well on Monday, but the multiple partial bowel blockages I have continue to cause problems especially with severe, frequent diarrhea. The vomitting is under control the nausea is less. I don't have to tell you, eating is tough. I was so exhausted last night from not being able to sleep in the hospital for a week. I hope you are doing ok
My drain is really easy to manage. When I get some strength back, I will put some info here for anyone who may need it.
Stephanie, always sending my love.
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Hummingbird,
I'm glad to hear you are back home! I'm sure you are exhausted - hospitals do that to you. I hope you are able to find some soothing food, like good soup, that will stay down but help give you some strength. I also hope they gave you nausea meds that are able to work for you. Mets affecting the digestive system just gives us additional issues besides the cancer. Ugh.
Praying for you to have some good, much-needed sleep tonight. Happy the drain is easy for you.
Hugs, Sheri
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Great love for all of us at bco, especially we who suffer and overcome and are beaten down find the resilience to survive and even thrive in adversity.
Hummingbird, may you be at home and well cared for there.
Know we're pulling for you from afar.
warmest of healing regards for all, Stephanie
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Sheri, thank you so much. Yes, today I did feel better just being more rested and able to keep food down. No diarrhea either! I'm so Glad the draining is going well which helps a lot too.
Stephanie, as usual you continue to care and support even with all you are dealing with. Thank you. Much Love going out to you.
I'm scheduled for my next Halaven infusion on Friday so hopefully I'm strong enough to deal with it and it doesn't set me back too much. Keeping my fingers crossed!
Thinking of you all!
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Happy to see everyone here. Hummingbird isn't it grand to sleep in your own bed with your own pillows not those crinkly plastic coated hospital pillows? I know hospitals do their best and hygiene vs comfort is a battle - but there is nothing like sleeping in your OWN BED!! Be it ever so humble or grand. Happy healing to you.Yay for no diarrhea and a working drain. Take your pain meds while the site heals
I am worried about Dianarose as we have not hear anything. I hope she is well. Prayers your way Dianarose. Prayers to all our belly mets sisters.
I went in for chemo today and it was busy as usual. Man those nurses run their tails off and they are soo nice . My oncologist worked me in I had such a rough time of it. They really helped me out today I am most GRATEFUL!! It was great I got to see her. I got fluids as I haven't been able to keep enough down and am always thirsty. That really made me feel better. The chemo must have worn off or beat back the cancer in my stomach because I could eat and drink this morning and felt better. I ate more this morning then I have eaten in days and days. We talked about pain relief and got that settled. Also my onc decided maybe the higher dose chemo isn't tolerated, my liver enzymes were up a little, white count down a bit and all the vomiting and pain. So she lowered the dose. We will see if this controls the symptoms while still controlling the cancer - I surely hope so. Maybe I will be there for Thanksgiving and be able to nibble on food. fingers crossed.
There was a huge 2000 person protesters over the election and they blocked the bridge and freeway effectively cutting off East/ West movement in the city of Portland. We managed to just get through there before the freeway and bridge got shut down. Whew. A sea of humanity in cars and hundreds walking the freeway. Lucky timing. Be well my friends.
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Had another transfusion Tuesday. Red counts still in the danger zone. Platelets did go up a bit to 56. Long ways to go. I feel better the day after the transfusion but then start to get tired. The stress of it all is overwhelming and now being medicated for it. Go today for an echocardiogram because she wants to add A/C to the Taxol. Makes me nervous because A/C lowers platelets and red cells. Just trying to get through each day without a total mental breakdown
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Dianarose,
Thank you for taking the time to update us. I am so very sorry you are going through all this, and I know it is very scary. I'm glad you are addressing the mental side of this too as many times we do need medical help for our minds to get us through. I don't have any advice but want you to know we are here for you to listen when you need to vent and let you know our experiences, if needed and asked. Praying for you to have better days ahead.
Virtual hugs to you,
Sheri
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Dianarose- good to hear from you. My platelets have been as low as 10 and I have had over 20 transfusions without a reaction, so I thought I would throw that out. The cancer ate my bone marrow and my H&H got down to 5 and 16. It was a rough couple of months and the fatigue was horrendous.This was in 2014 and here it is 2016. Hang in there. Do they know why this is happening?
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Hi Dianarose, I just wanted to send you a hug and let you know I'm thinking of you. I can imagine how having such low blood counts can make you feel ...,and feeling unwell is very stressful. Sending lots of healing thoughts your way
Judy
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Rosevalley- they don't know why as it all started before the chemo. They are sort of focused on when. All stated when I had the biopsy and port placement. Happen in a couple of days. They don't believe the lobular is doing it as it isn't that aggressive. Maybe a Med or the gas they put in my tummy. No one knows. Your numbers got dam scary. Got out and had the echocardiogram and then to a couple of stores but now my foot is swollen again. All crazy. Thanks for sharing I don't feel so all alone no
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Hi, just popping in for a moment to say thank you for taking my questions earlier, and to report that my CT with contrast did not show any peritoneal or other odd mets. I think something is probably simmering in the liver. Will talk to my onc soon. Sending good wishes to you all.
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Spony- glad nothing to the peritoneal 😍
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Dianarose, I'm so sorry you are having such a rough time. I am praying for you tonight that everything levels out very soon and you find some relief from both the physical and mental stress you are under.
Hummingbird, i am so glad everything went OK and you are back home in your own bed. Rosevalley said it. There is NOTHING like your own bed.
Rosevalley and Stephanie, the things you have been through and still share such hopeful messages is awe inspiring. All be well on this sleepless night.
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UGH Just been feeling so down this week...wondering what we have become as a nation. Worried about health care for all of us. I am currently semi-bald on top with weepy eyes from the chemo and so tired I feel pretty..... oh so pretty! LOL I have company coming at Thanksgiving and my house is a mess. My family takes great care of me but not so much in the cleaning department. I know this too shall pass. I know a lot of us feel terrible right now. Please hang in....we are so important to each other. Love and Hugs, Cathy
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retro- sorry your not feeling good today. I hired a woman to come in once a week. All I have her do is all the dusting and sweep and mop the floors. Best twenty bucks I spend every week 😁
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Hi ladies, So I dehydrated again and wound up back in the hospital last Thursday. I'm still in the hospital. Again with very frequent diarrhea. I couldn't even sit up!!! It was bad. But I'm feeling better right now and I feel stronger.
Cathy and Dianarose, I never had housekeeping but as soon as I get home, I will. Just can't do it anymore.
Thinking of you all.
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I am with you on the housekeeper, but could never find someone for just 20.00. Getting on my knees and scrubbing the floor just wipes me out. Thank goodness I have DH or this place would be a mess. I go food shopping or any kind of shopping and I am wiped out. I am a one trip person anymore.
Hummingbird I am so sorry you are back in the hospital and glad to hear fluids helped and you are feeling better. Diarrhea can be deadly. Many people all over the world die, especially children, from the effects of diarrhea. We are lucky to live were we can get help quickly. Hope you feel better and go home soon.
Hugs to all our belly mets sisters.
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Oh Hummingbird, I'm so sorry you are back in the hospital! Dehydration is scary - I had to go in an ambulance one time per my doctor due to dehydration and very low potassium when I was on a feeding tube. It was terrible! Praise that you are feeling better.
Ladies, I do have a housekeeper that comes every other week for $110. I've had the same woman for probably 15 years. I feel she is now part of our family, so I will never let her go. When I was working full time, I just could not keep up and feel the same way now that I'm on disability, even though we have less spendable income. We have a 2 story home and just too many bathrooms to clean. For me, it's the best money I can spend, but it does get pricey. I just have to cut my spending elsewhere.
Take care, my friends. Wishing each of you a blessed, calm day.
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Rosevalley and Southernsurvivor, thanks for the good wishes.
I got home from the hospital a little while ago but have to get up by 5 in the morning to get back there for a few early appointments which will end in chemo! Halaven. I'm worried, of course, that having chemo as I'm just getting back on my feet will set me back a lot. I'm a week late already for this infusion, so my onc doesn't want to hold off any longer. I sure hope I do ok.
Wishing everyone a good night.
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