peritoneal carcinomatosis
Comments
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sally, yes - I do use Colace (and Gas-X) daily for weeks at a time whenever I am having progression of my bowel mets and my bowels kink. Then as a new treatment works, the kinking subsides and I can stop those pills. Right now, I am taking them daily because I am waiting for Doxil to hopefully kick in after I had increased bowel tumor infiltration due to Taxol failing. Just be careful about using any laxatives instead of a stool softener because if you do have a bowel obstruction, that would be dangerous. Are you due to have a scan soon to rule out an obstruction or a partial obstruction?
Stephanie, thank you for the tips on living with ascites. You always provide us with excellent, helpful information. I hope you are more comfortable and the problem with your drain has been solved. I appreciate all you post as you are going through such a difficult time. Thank you.
Best wishes to everyone
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Hummingbird, I had a scan last week. No blockages but small bowel had thickening. I started on a new treatment 2 weeks ago after having progression on Havalen.
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Sallyk I have thickening in my small bowel and constriction at the duodenum which causes me endless misery when the cancer flairs up. As the treatments work and the thickening decreases, I can eat and digest food. When the treatments fail the constriction increases and I am back to puking and nausea. I will also use stool softeners to move things along. Good luck with this new treatment I hope you get relief soon.
Hummingbird may Doxil work some magic!! I'm on Gemzar right now and with the exception of serious fatigue and some weakness, it is pretty doable. Blessings to us all.
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Sally, my bowels are unique, as I had a partial colectomy as an infant and am now on narcotics for pain relief. No constipation for me, though plenty of other abdominal challenges including ascites, tumors and a grossly distended liver. It's amazing what the body can adapt to!
Hummingbird, still hoping the dioxin kicks in soon for you. You are such sweetheart and your mother and you need each other to get through this - together and stronger together.
Rosevalley, Gemzar is doable for you! Hurray! May it do what it should to ease your cancer suffering.
Warm healing regards for all, Stephanie
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Hugs to you Stephanie!! Lots of love your way.
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sally, Glad to hear you don't have a blockage but sorry you have bowel thickening. Hoping your new treatment works and you get relief soon!
Rosevalley, thank you and I hope Gemzar works for you! I felt the same way after the Doxil infusion as you did with Gemzar. Had some weakness and bad fatigue - felt crappy on and off for the first week and also had the swollen, hard belly and bowel issues to deal with. But after that I felt much better as far as the chemo se. It's certainly harder than Taxol - I actually miss Taxol! But as long as we get relief ... Keeping my fingers crossed. Would love to see the swelling go down!
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Stephanie, thank you. You are so amazing! And you think of my Mom too, and remembered. You are so right - my mom and I have to be here for one another, to support each other through this horrible disease. Always hoping you are comfortable, Stephanie.
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sallyk- yes I use a dose of Miralax daily and still occasionally need a laxative to get things moving. My MO says it's totally safe to take everyday. I put it in my morning cup of coffee. No taste to it.
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cs0660... I'm back on daily Miralax and stool softeners.My biggest issue now is the acid reflux. Even with meds having problems with the reflux.
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Yep thank goodness for prilosec. I take one every morning and am miserable with out it. Well this week has been a week off of Gemzar and I am finally starting to feel alive again. I was so tired and icky after the 3rd dose that all I wanted to do was lie around which of course makes you weaker and it becomes a cycle. The fluid I pull off the drain hasn't let up even a little. It seems to increase. My markers were decreasing so I am perplexed why the ascites production never seems influenced at all by the chemo. I really feel bloated and full and mildly nauseous on non drain days, by the end of the day I can't eat dinner and frequently vomit. It appears to be the influence/pressure of the fluid on intestines and stomach. I pulled off a bursting full container this morning and felt SOOO much better. I ate a yogurt and English muffin and 2 cups of coffee. Woohoo. Thank goodness for this drain.. blessings on my wonderful Pleurx drain. For those poor souls whose lungs fill up and it is hard to breathe- must be heaven to take a nice deep breath and feel alive. Get that pressure and fluid off.
I hope the fullness and misery is less Hummingbird! How is Doxil going? Blessings to all especially those on hospice. ((Hugs))
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Rosevalley, glad to hear your markers are decreasing and hoping now that your ascites decreases too! Sorry that you are back with the nausea, vomitting, and bloating. Wishing that would clear up as the Gemzar works. This is so tough!
Had my second Doxil infusion on Tuesday and I get weakness and fatigue from it. But last time I had Taxol the week right before the Doxil, and so I felt worse than I do now as far as the chemo se. Having doubts that Doxil is even working for me though - symptoms are the same and my tumor marker, the CA 15-3, just went up to 1,145 !!!!! Last month it was 605 so that is a big increase in just 4 weeks! I fear something really crazy is going on. My scans in July showed a lot of progression and that was the reason I stopped Taxol and went to Doxil. But I have scans scheduled again for Thursday because my MO wants to see if there is even more progression with this high marker and the symptoms I'm having. Hope not, but if so then she will change treatment when I see her on Sept. 6. Next week makes 3 years I've been dealing with MBC (original bc in 2009) and I have to admit that I'm getting worn down from the worry and disappointing treatment outcomes. Just want something to work for a while!!
Wishing everyone good, comfortable, enjoyable days!
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Hummingbird-
How are you standing the ascites? I would be puking my guts up if my markers were 1100! I start puking at 850. My gut just shuts down. Are they doing a paracentesis? Can you eat? You hav to wait until Sept 6th? You are jumping to the head of the line on prayers. I tried Doxil in Dec and it didn't work my markers doubled. They were 1100 something back then. Now they are 660 on Gemzar. I will say that after the 3rd week it kicks butt. I was down for the count 3rd Friday. I get infusions on Wednesday. The cycle starts again next week. I hear you since November I have failed Herceptin, Doxil, Faslodex, Taxol, Abraxane, Ibrance and I too would like something to work for a while. I will be praying for you and your Mom.
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Thank you, Rosevalley. Although I have "moderate" ascites, my MO said draining wouldn't make much of a difference as far as the bloating because it's the bowel kinking that causes the swelling in my case. Lot of gas builds up too. I can eat but it gets scary and painful when nothing can come out. My MO is away till Aug. 30 and since I just had chemo, even if Thursday's scans show I need a new treatment, I probably have to wait anyway. I had a liver biopsy 2 weeks ago to see if I've added any new mutations which might help in deciding the next treatment. Results take about another month. But I do know that I am still strongly ER/PR + (95%). However, the mutations have worked around the anti-hormonal drugs and they don't work for me. Wish they did!!
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Hummingbird- wow.. are you trying Reglan? I am using 5mg 2x a day to aide bowel motility and keep contents moving. It also helps with nausea. When the markers were higher and the constriction in my small bowel more severe I used 10mg of reglan 3x a day. It really worked.. I could keep things down and poop. I have thickening and kinking in my bowels too. It was causing severe N/V bloating. Now it's better. Getting the ascites fluid off enables me to eat and feel better. Have you ever had the fluid drained? Did they send it off for analysis? We are both ILC. I hope things improve.
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Living with peritoneal mets is really like always walking on a razor's edge.
Requires so much focus and attention to neither fall off nor get sliced.
My heart holds all of us as we negotiate with dedication, beauty, love and finesse.
Loving kindness and healing light for everyone, especially my peritoneal sisters, Stephanie
PS, I'm still draining a liter of bloody ascites daily, but the fluid now has tissue in it, so the hospice nurses come to flush my line before it will flow. Never a dull moment in cancer land, but I could really use a different type of excitement about now. In-season watermelon!
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Stephanie, so so true!! Go enjoy that watermelon!!
Rosevalley, thanks for the info on Reglan. I've seen 2 gastroenterologists, one at my cancer center, and neither mentioned it. I will ask though. As far as the ascites, I was never drained but the fluid was tested and it is malignant. ILC.
Thinking of you all and wishing the best
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I was wondering how long everyone has been living with peritoneal mets. I have just hit my 4 year mark! It is getting harder. Having to do miralax and stool softeners daily, constant burping and belching with everything I eat and drink. A lot of times food is coming back up. I want to eat so bad but you know what is going to happen. Stomach looks like I'm 7 months pregnant. Then the pain in the pelvic and back. Going to get stomach and lung drained this week, praying I start feeling better. Sorry to rant Just having a bad week.
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SallyK- Go ahead and rant we have all been there. I have had malignant ascites for a little over a year. I did the paracentesis and then opted for a drain placement. Thank GOODNESS for this drain cause I take off 1000cc every other day. It's too hard to eat and feel good with all that fluid mashing your stomach and intestines. If the cancer is swelling your stomach and intestines then food will back up and the vomiting and reflux is hellacious. I feel for you. I hope they find a treatment that kicks back the mets and allows you to eat again. Good luck with the tap. You might consider a drain placement to do it yourself. Imagine instant relief every couple of days. Take care. rosevalley
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Rosevalley, I'm going to ask my dr. about the drain at my next appointment. Have been on 3 different treatments since Feb. the first one had dried the ascites up. I was really hoping this new treatment would kick in and ascites would clear up. Thanks for listening....Sallyk
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I feel so much for you ladies going through this particular complication. It sounds like it brings a lot of misery and work. I too am ILC and so far it seems like nothing is working for me either. I haven't had to deal with this issue yet but do read up here just in case the time comes. Plus I like to check up on you ladies
......Anyway, i'm sorry Hummingbird about the huge progression and Rosevalley that you still are getting the N & V, and everyone else that is experiencing all that this entails. Stephanie, I am just so inspired by your gracious and upbeat posts in spite of all you endure. I just got a call that said my insurance will not pay for a PET this time so moving to CT's I guess. How do they know if a med has had any success with CT? I'm thinking of you all as you grapple with new meds, new scans, new symptoms, all the up and downs of this crazy crummy ride.0 -
Well Stephanie you will appreciate this. I was so bloated today that even though I drained 1100 off yesterday I got another 1100 off today! I feel better. I just seem to be moving all the fluid I drink to my gut. Very uncomfortable. My oncologist said to roll with what I need. Clearly I need to do 2 bottles or every day. Sigh Gemzar is not lessening the ascites at all.
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Rosevalley, I vote for daily draining!
Why wait until you want to burst?
Fingers crossed that the ascites is helping with N&V and will knock back the ascites soon too.
big healing hug, Stephanie
loving, healing light for all!
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Artist, you are always so caring to check up on us here! ILC is such a sneaky animal. I read your other post about the CT scan and I know they were able to get you in for one tomorrow which is great. I know you go through a lot of anxiety over scans. I am hoping and praying very hard that things go very smoothly for you and that, of course, you will get great results!! I will be thinking of you tomorrow. Good Luck!
Rosevalley, I just get so sad to hear that your ascites isn't decreasing. Still hoping the Gemzar starts to kick in to do it!
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Thanks Hummingbird, I'll be thinking of you on Thursday! Rosevalley, I hope the Gemzar starts kicking in too and you get some relief.
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Just checking in here to see how you all are doing. Any relief Hummingbird? Artistatheart- any news on the tests? SallyK what is going on with you? I am the same pulling off a liter every day and struggling with intermittent N/V and near constant gas and bloating. Thank goodness for the drain to get the fluid off.
Hugs and healing to all. rosevalley
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Hi Rosevalley & peritoneal friends,
Trigger alert: gross, disgusting and possibly distressing graphic medical news follows! Read at your own peril!
I sorta forgot about this peritoneal neighborhood, focused on other things and have an intermittent internet connection.
My peritoneal mets are progressing. I continue to pull of a liter of fluid daily, but now it's quite bloody and contains blobs of tissue. The drain line blocks with tissue, so a hospice nurse comes daily to flush the line before draining.
Speaking of draining, a full year of this draining business has left my body severely depleted in so many ways - immune system, fluids, protein, electrolytes, blood pressure, heart rate, anemia, malnutrition, etc.
Held steady at 100# for many weeks (I'm 5'6", so am underweight - have cachexia). Have recently dipped below 100# & breathing is more difficult, due to swollen liver tumor pressing on lung plus preexisting lung and pleural mets. Also, liver is distended far into my abdomen - clean to my pelvis - wow!
Amazingly enough, I'm still having a good time and grateful to be connected to many wonderful in-person and online friends. I am learning so much now - at my edge of knowledge and mystery. Maybe wisdom will grace my life? Peace and ease of heart and mind.
much love and gratitude for everyone, Stephanie
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Stephanie hugs and more hugs for you. You are wasting away. I can't imagine the pressure you must feel with such a swollen liver and the continued ascites. I feel quite uncomfortable and unhappy with a liter pressing on my stomach and intestines- no liver swelling (liver mets yes) . Everyday I opt to take it off. Enough misery. It is a blessing hospice sends nurses off to flush and maintain the drain and your comfort. It is caring and comfort pay back for the years you spent working in hospice yourself. Sending you loving kindness to ease your suffering. Are you able to eat and drink? I am curious what tastes good to you now? Ice cream tastes good to me and stoufer's spinach soufle.
Tonight we take the kids to see the Lion King. It will be my last family evening out with all my girls and DH together. I am excited and hoping for a good time. I will drain before I leave, take a pain pill and resolve to have a great evening. Poor DH does all the driving and I worry about his health. It's a lot of stress. Lovingkindness to all the caretakers out there who support and make life possible for us cancer patients. We thank you. Truly you are unsung heroes.
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Oh my gosh Stephanie and Rosevalley, my heart just hurts for everything you girls are going through. How you maintain such grace and generosity under these circumstances just astounds me. I hope MANY things grace your life Stephanie as you grace ours and you as well Rosevalley. My tests went OK, slight dip in TM's and enzymes but my WBC was unusualy low for me so have to go on a different schedule for the Ibrance. CT showed stable on liver mets to possible very slight progression. So I guess I can stop stressing for a couple of weeks, until next lab. Thanks for asking Rosevalley! Hugs to you girls....
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Stephanie and Rosevalley, I am so sorry to hear that you are having more difficult days. You both have been such an inspiration to me as well as a source of information and support. How I wish something could be done to ease your suffering. We are a small group here and I would be so much more terrified if I didn't have this thread and you to come to.
I got my scan results yesterday. More progression in just the one month since my last scans! Liver lesions increased in size and multiple new liver mets. Increased malignant ascites and about the same bowel, peritoneal, and bone mets. I'm swollen again and I certainly understand the discomfort of gas, bloating, bowel issues, and abdominal pain. So at my MO recommendation, I am seriously considering a clinical trial using a targeted drug. I'm very disappointed that Doxil didn't work at all. I have already been in two other trials with no success, so I am reluctant There is the tremendous time commitment with many long days at the cancer center - fasting, and sitting around for many tests. Brutal protocol. But - I am willing to give this a chance and if it works then I won't mind at all! I will make the decision after a consult on Thursday. My MO said that I will be watched closely and, if necessary, I can jump to another chemo and hope the chemo works!!
Always thinking of you all and wishing for comfort
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Hummingbird.....
that sucks. I'm sorry to hear that. You just can't catch a break. I guess all we can do is keep going and hope the next thing is the one. I certainly understand your reluctance at spending a bunch of time at a new trial. It's bad enough to be feeling so crummy but then to have to do it while waiting in a medical facility is just such a downer. Whatever you decide I am praying that this next one is the one that will work magic! Take care Hummingbird.0
