peritoneal carcinomatosis
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Hi Ladies
I’m feeling pretty good today other than my burning hands and feet. It’s been amazing this week to not have the extreme fatigue that I’ve had ever since starting my Doxil l treatments. The fatigue never fully went away during the first round. Last week I was feeling so bad I even had thoughts of stopping treatment. Then the fatigue lifted and I feel like a different person. I had started to get worried that I was becoming clinically depressed but it looks like it was chemo fatigue.
Since I am feeling good we are going to the ocean again, this time north to the Mendocino Coast which is one of my all-time favorite places. We have a great hotel that we stay at that has a view of the ocean that is on a paved hiking trail.
Then back home for my 3rd infusion on Thursday to start the cycle over again. Yuk!
I had my second individual Pilates session yesterday. We are focusing on me learning things that I can also do at home especially since my walking is limited with the hand foot syndrome. I am so weak compared to where I was before getting the feeding tube, etc. but that gives me lots of opportunity to improve.
Wonderful on your tumor markers Cathy! I am interested in your trial, wondering if it could be an option for me in the future.
So happy you are starting to feel better Sheri.
Dianarose you are right that we all deserve a break. I hope you are getting good results from your radiation.
Jane I did check out the Xeloda thread and saw some ideas, thanks for the suggestion.
Hugs
Barb
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Hello All. Went in yesterday for Interferon shots. Cleaning out my system didn't help. Not much movement just really uncomfortable. Talked to nurse yesterday and the next thing I knew I was being wheeled over to emergency room for possible bowel blockage. No blockage just a lot of ascites again. 3 Weeks and another 4 liters of fluid. ER doc had the ascites tested and it's full of cancer cells. I don't understand how my tumor markers could have gone down if the gut is full of cancer cells. I feel better today but now having bits of diarrhea and cramping. Not scheduled to see onc but guess I need to. Afraid of being taken off clinical trial but afraid to stay on it. Running out of options. I would appreciate any and all ideas. Love you guys, Cathy p.s. I don't think the doc understands I have days when I hardly eat because I have no room for it. It's making me feel weaker besides.
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Hi Cathy,
I'm so sorry to hear this. I really don't understand tumor markers. Mine were in the normal range three weeks ago. Really? I have extensive bone mets, pleural mets and mets in my gut but according to the TMs I'm cured! Apparently my TMs are completely useless. I just wish I had some suggestions for you.
I'm in scan land again. Just came back from bone scans - they spent a lot of time fiddling around trying to get good images of my sides. Next week I have a CT. MO ordered a more detailed scan of my liver. Not sure what that's about. Feel a bit off - I think stress is getting the better of me. (May also be nausea from my back. Those "beds" are NOT comfortable and then I spent an inordinate amount of time with my arms over my head. Now I'm aching.)
Wish I could make us all feel better. Hugs to all. Pat
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Barb - good for you back to the coast! I’m so impressed with your fortitude. That HFS can be bad. Mine was my last few months of Xeloda. I never could get it better once it got bad. I did use the Udderly Smooth cream with 20% urea, which made it feel better at least.
Cathy - so sorry about your ascites and being uncomfortable. I get it as I’m miserable right now. Having a hard time getting off the couch at all. My TMs have decreased too but now I have ascites, so that can’t be good.
Do they think it’s thickening of the bowel? Something has to be causing some obstruction. My appetite isn’t good either and it does make you weaker. I have absolutely no energy right now and not sure what to do about it. I haven’t been this bad since early 2015. Have you tried Premier Protein drinks? My MO said to drink those as I need more protein. Each bottle has 30 grams of protein. I thought the vanilla flavor tasted too sweet but I hear the chocolate is good. I’m going to try it. Let me know if you do.
Pat - I’m praying your scans are good. Always something to have to do or think about, isn’t there? Hang in there.
Ladies - living life is not easy with this cancer. I’m so weary. Hard to be positive these days. Love to all.
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We need a little fight. We're sounding like we are giving up. Being of the Woodstock generation my mind goes to the "fish" cheer called out to a crowd of 500,000 people who all answered back. "Give me an F!! " You know the rest! "What's that spell? What's that spell?" Say it...yell it...stomp your feet! Cancer may get us but NOT today!! Hugs, Cathy
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That cheer brings back memories Cathy! Also gave me a good laugh. Yes we need to fight but it’s hard when our treatments cause fatigue and other side effects that add to the ones we already have from the disease. I was having a hard time feeling positive for about 15 days after my last infusion. Once the fatigue lifted I’ve felt like a different person even with my burning hands and feet. Tomorrow is my next infusion so I’m thinking of what I can do to not fall into such a slump. My counselor suggested trying acupuncture or accupressure massage or other energy practices. I was doing Quigong pretty regularly before the gastro issues happened so I’m going to try to do that every morning. Walking meditation always helps me but I’m not sure walking it’s a good idea on my feet right now. If anyone has some good ideas on what has worked for them let me know.
Cathy have you had a small bowel follow through test? They did one on me that I think it shows if there any issues in your intestines. My intestines were fine but my stomach wasn’t emptying.
Sheri I bet that not being able to eat that is what’s making you feel weaker. Hopefully the protein drinks will help. I’m doing OK so far with the tube feeding and actually gained back some of the weight that I had lost. So while it’s not very fun for the lifestyles standpoint at least it’s doing it’s job.
Good luck on your scans Pat.
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Thanks, Barb, for remembering! I was afraid everyone thought I had lost my mind. Which is entirely possible by the way. I have to chuckle through this otherwise I go crazy. Had interferon today and i.v. for hydration. They finally noticed I've dropped about 10 lbs in the last month. I think because I wasn't admitted to the hospital, we will have a penalty from our insurance for about $1,000. No wonder I felt weepy when they said I had to go to the E.R. Glad I'm done for a couple of weeks. I'm supposed to call if anything changes. I'm so sorry everyone is having such a hard time. Believe me I have frequently been at that point and have been recently. My poor butt can't take much more of dribs and drabs and accidents and wiping. My 64 year old skin is not happy. The scan showed no blockage but apparently the ascites was pushing my intestines and stomach up. That's why I felt like I had gastroparesis again. It is miserable. 4 tablespoons of soup and you feel like you had an entire turkey dinner. I do feel better now. Scan also showed my liver looks smaller than normal. That's new and no one has said anything about it. Guess I won't worry until they do. HUGS, Cathy
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Hey y’all! I had to laugh about Cathy’s Woodstock cheer as I honestly had no idea what it was. I’m 54, so I’m not familiar with what happened at Woodstock in the late 60’s. 😂
I got my doctor to call in some pain meds for me late this afternoon. I’m going to try to use them sparingly but they made such a positive difference tonight. Pain on top of not feeling well anyway is a bad combination. Also, I had the big D about 6 times today. Ugh.
Cathy, 10 lbs in a month is a lot. Sometimes it’s hard keeping track of what my weight really is when ascites builds up (hence weight gain) then draining of the ascites eventually (weight loss.) It’s a roller coaster. I think I’ve lost almost 20 lbs though in the last couple of months, which has made me even more weak. I have not felt much like eating.
Time for bed. Just wanted to tell you I’m thinking of our group tonight and praying for better days ahead. Hugs all around!
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Called the cancer center and of course waiting for a call back. The pain from the brain mets is intolerable. Woke me up at 4 A.M. took
A pain pill they gave me but the pain didn’t lighten up till after 8. It’s awful. I haven’t had a bm in over six days. Cancer center just called and want me to go to the waist oh my time ER
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I'm so sorry Dianarose! Having just had the E.R. experience, I feel the same way. Hope they have some empathy and get you in right away. Hope they HELP you right away. We will all be worrying about you. Let us know. Wrapping you in a big hug, Cathy
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I hope you are getting some relief Dianarose.
Love and good thoughts to all.
Barb
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Definately need that trip to Disneyland!!! Sing songs from the Woodstock era (I am 65 so absolutely my vintage! - just love it!). Perhaps if we all ride the roller coaster the pressure on our bowels may be lifted when we hang upside down.....??!!
So very sorry everyone is having issues and wishing speedy relief. Dianarose - BIG healing hugs!!
I was naughty and ‘strayed’ off my fibre free, nutrition free diet and ‘paid the price’!!! - managed to irritate and inflame my bowel - ouch - NOT good. I felt like a naughty child when I ‘confessed’ to my MO. Meds for pain relief but no meds for stupidity!!!!
Pat - I have been having weekly Acupuncture for a year which provides me with significant relief. I highly recommend giving it a go. I also have regular Oncology massages which are wonderful.
Sending warm and soothing hugs to all.
Jane
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I’m so sorry DianaRose. You need to get to ER for pain relief. I suffered with a horrible headache for hours and nothing but an injection worked. We are going through enough,we should have as much pain relief as possible. I sent you a pm a few days ago. I am here for you any time.
Marina
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I’ve been thinking of this group and hoping all are doing better. It’s been a tough month.
Love and hugs to everyone.
Barb
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Hi gals - this thread has been a little slower than usual. Yes, Barb, a tough month for several. How are you holding up on Doxil? Praying for Dianarose as she has had some very rough times lately. Cathy, how are you doing? Jane, hope you are feeling better now. I’m wondering too, how do you get “Oncology massages”? Are those out of pocket or insurance paid?
Since I checked in, I started my pain meds for my back, which have helped. Then I got a UTI, so on antibiotics for that. Saw my MO on Tuesday and he wanted me to continue my protocol of Herceptin and Navelbine, thinking I will start feeling better. I sure hope so, but I’m not convinced. Had all my infusions yesterday along with a liter of fluids, as I was dehydrated. Another reason I’m sure I wasn’t feeling good. Haven’t really gone to the bathroom in several days, which I’m sure the pain meds stopped me up. So I go from the big D to constipation. Apparently no happy medium for me.
I’m really quite the mess - I haven’t felt like doing anything for weeks. At least I have both cataract surgeries behind me and most of my post-ops related to those are done. I don’t have to go back for 2 1/2 more weeks now to get my glasses prescription. The cataract surgeries weren’t bad but it was all the pre-op and post-op appointments surrounding them that made it all too much, especially when I wasn’t feeling well.
Hope everyone can check-in soon. Waving hi to Pat and Marina. I miss hearing what everyone is up to and how you are doing.
Hugs, Sheri 💕
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Had a tough night. Could not get the pain under control even with the medication. Took more pills and hours this morning to get things to ca down. Elat was weird was my knees and legs were really hurting. Don’t know why. All my hair fell out last night. Sucks! I almost took a digger draining my pee bag this morning. I need to find a different way to do it. Now I put my knee on the toilet seat but I lose my balance. Everything is so hard these days. I hope you ladies are doing well. Sheri I pray you feel better soon
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Hi All,
It has been a rough month for so many of you. I'm doing okay, waiting on scan results. My bone scan came back stable but I don't tend to put a lot of weight on bones scans as they significantly under report my bone mets. I'm more interested in the findings from the CT which I had last night.
One big question for me is whether I should be thinking about another zap of radiation. My back is giving me grief and I am having constant headaches. I know my lumbar spine has a heavy load of mets which is likely causing some of the issues but I'm also dealing with right lower abdominal/chest pain which remains unexplained. It could be the mets in my pleural lining and belly - my rib cage is quite collapsed on the lower right side from the pleura pulling in - a bit like wearing a girdle full time. My MO and I are also wondering if it could be mets on the ribs. Hopefully the CT will show something.
I always find it hard to know what to do about symptoms that can easily be unrelated to cancer. I've had back problems for many years and, when my neck is out of alignment, I do get headaches. Unfortunately, as you all know, with MBC in the mix it tends to take on a more ominous tone. And then there are the side effects of the treatments aimed at helping us. Today I hurt from the top of my head to my toes as a result of the Pamidronate infusion I had yesterday. It really hammers me for about two days.
Well, must run. Still working to get rid of the clutter. Slowly making progress.
Hugs to all. Pat
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I had my third doxil treatment last week. Doing better with fatigue this round but have a lot of hand foot syndrome side effects. Nothing as bad as with many of you are going through right now.
I'm going to have an acupressure massage this afternoon. Looking forward to it and hoping to come up with a way to do some kind of energy therapy like accupressure, acupuncture, Sound healing, etc every week. I think that will help with side effects now that I have the energy to get to an appointment.
Bar
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Hi All! Will this month never end? I usually love October (my birthday is on the 26th..the big 65). I got a call from clinical trial on Wednesday asking me how I was feeling. I told them I thought I had developed a bladder infection. The next thing I know, I get a call from oncology telling me to go to emergency. After my last experience I said, "NO!" I called the urgent care which is affiliated with all my doctors and asked them if they could help me. They were fabulous. I was there in 5 minutes and they took me straight back .I had a humdinger of an infection. Those of us who deal with the "BIG D" as Sheri calls it knows how often you get infections. Apparently something about Cytoxan makes them more worried about infections leading to sepsis....the next thing I knew I was admitted to the hospital through the walk-in clinic.. Is that fabulous or what? Not only were they wonderful at the urgent care clinic but every member of the staff I had in the hospital was professional and empathetic at the same time. I was pumped full of some I.V. antibiotics over the last 3 days. Even though they did no scan, the consensus was it had turned into a kidney infection. Fortunately no sepsis. I have another 10 days of Cipro to go. I have had an unusual ache in my mid back. I should have realized. Anyway, home today. My clinical trial has been put off a week to give me time to heal....so that's into November. I just caught up with everyone right now. I'm so proud of all of us..still in there fighting. I hope we all start feeling better soon. We all deserve a break. I'm hoping I feel good enough to eat crab for my birthday! You know I'm sick when I can't eat. I dropped another 5 lbs. Love each and every one of you!! Cathy
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Cathy I am so glad they caught your infection they did and that you had a good experience this time with the urgent care clinic getting you into the hospital. It’s amazing what a difference it can make with things like that go smoothly. Rest up and get yourself ready for that crab!
I’m sitting around babying the blisters on my feet. It’s a side effect of the doxil. Every time I do any extended walking, by which I mean more than a quarter-mile, I seem to get a new blister. I’ve tried some different socks, don’t wear tight shoes but still they appear.
I went to the movies with a friend today and saw First Man. It was a really good overview of the space program and race to the moon. It brought back memories from that time which I am old enough to remember (like Woodstock).
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That's funny, Barb! It was a fascinating time in our history. How great you got out to a movie. I used to go for the popcorn which I can't eat now. Makes me sad. I'm sorry about your feet. That sounds miserable. Anything that threatens our mobility is scary. I still have a problem with neuropathy after Halaven. It's better right now. I'm rambling cause I'm tired. Guess it all caught up with me. Good night!! Cathy
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Cathy- glad you got help right away and are doing better.
I have been fighting with the big C . I am on four different things to get things going. Got up this morning and had to go. Sad thing is it came on so fast didn’t get to the toilet in time. The things we go
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Good morning, all! Cathy, I’m so glad you are OK. I wonder what made them think it was a kidney infection? I worry myself about that since I’ve been feeling so poorly. I had what I thought was a UTI but I’ve also had back aches which I don’t usually have. The UTI seemed to go away with 7 days of antibiotics but back pain is still on/off. I am taking pain meds as needed but they are stopping me up big time. I’ve gone from the usual “big D” to the “big C” which isn’t fun at all.
DH’s Birthday is today and I’m miserable on the couch, as usual. I have no energy and not up for anything, unfortunately. I always thought Navelbine would be like the other chemos, but I’m finding the Navelbine/Herceptin combo so incredibly difficult. It’s hard when I seem to have no good days - every day is exhausting.
Thinking of everyone having tough times today - Dianarose, Cathy, Barb, and Pat. Hugs to you all.
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Ah, Dianarose... Helluva way to start your day. Happens to me too. Have that sudden urge to go and I'm going. No way to get to the bathroom in time. I tell my Doc and he just shakes his head. It happened to me all night the first night I was in the hospital. I was sharing a bathroom besides. Thank goodness the lady was on a lot of pain meds and didn't wake up much. At one point I felt compelled to clean the bathroom after myself. I hadn't eaten much in days and had a fever besides. The night from hell. They actually tested me for C-Diff I was going so much. Negative for that and definitely no blockage! Good luck with the going. Use nice flushable wipes (cottonelle break down the best) just to keep your bottom happy. I am just so very glad you are still with us. We all care so much and worry about each other. Big hug, honey!! Cathy
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Sheri, Somehow I didn't see your post...I'm sorry! I think because my back pain was across the middle (right below waist) and not like muscle pain as much as a chronic ache they decided it had gone to at least a kidney. I was surprised they didn't do a scan but I was so glad to be getting out of there I didn't push it. I had all the I.V. antibiotic in the hospital and am taking Cipro at home. Good thing. UTI symptoms haven't even cleared up yet. I honestly didn't realize how sick I was. I had practically stopped eating for almost a week. I would eat 4 bites of something and I just couldn't get anything more down. By the time I went to the walk in clinic, I hadn't eaten anything except some scrambled eggs for 2 days. Took me from Wednesday to Friday before I felt like eating. Ate not quite half turkey sandwich on Thursday and whole turkey sandwich on Friday without crust. Came home and had a bowl of clam chowder. I actually did 2 loads of laundry today...just a little at a time. My hubby is having a colonoscopy tomorrow so we are dealing with that too. Ugh, just accidentally deleted what I had been typing. I will tell you more in the next couple of days. HUGS, Cathy p.s. I wonder how different it would have been if they had tested that specimen in the E.R. they never tested. HUM...
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I’ve been having good results with Smooth Move tea for the big C. I didn’t go for over a week when I first got the feeding tube and the Dietition recommended it. In my case I “drink “ it through my J tube so I don’t know what it tastes like which is kind of funny.Since being on Doxil I alternate between days with very watery bowels to being constipated 2 days later. The tea usually works within 2 days.
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Good evening my lovely ladies,
Cathy, I am SO very sorry that you have had to suffer. Just ghastly!! I can sympathise and relate to your experience with kidney infection as I used to be regularly hospitalised with bouts - the pain in the back can be soooooo debilitating. Hopefully you are resting and getting your body ready for your yummy Birthday crab feast! We shall all have to sing Happy Birthday to you on the 26th😄. I celebrated my 65th in March and fortunately was discharged from hospital the day prior.........just gotta love our challenges!
Sheri - hope you are feeling better with a tad more energy. Not fair when we want to celebrate our loved ones Birthdays. I have my oncology massages at a wonderful Cancer Care centre called 'Bloomhill' - bloomhill.com.au The treatments are subsidised so I only pay a small fee. I am so, so very fortunate because Bloomhill is unique in Australia and is located approx 40 minutes drive from home. If you have a chance have a look at the website. Also there are a number of private oncology massage practioners across the country however they are not covered by insurance.
Barb - how did you feel after your acupressure massage? So sorry about your blisters - we need our feet to be functioning!
Pat - hoping that by now your body pain has eased. Just admire you undertaking your decluttering - makes me feel weak at the thought....
Dianarose - the Big C!!! - a constant battle....I need to take meds every evening otherwise nothing happens and all my treatment team are clear - the Big C is our worst enemy. Has the radiation eased your headaches?
We are enjoying glorious Spring weather and the sun always brings smiles.
Sending warm, soothing, healing hugs my lovely ladies,
Jane
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I think the radiation is causing the pain . I was told that dying cancer cells could cause it. Taking the pain medication 24/7. I don’t weigh enough to hold the recliner down. I slid right out of it in the night.
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Ooohh Dianarose, your suffering is heartbreaking. Sending the most gentle but HUGE healing hugs. If the dying cells are causing the pain then there must be heaps that are being ‘zapped’! ......the upside of your suffering I hope. We need to ‘fatten you up’ - I have managed to put on approx 25 pounds in the past 3 months - lots of pure cream and yoghurt - yummy!
Thinking of you with loving support and sending you comfort.
Jane
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I
Put on three pounds this past week which is good for me. I eat a lot of oatmeal and cereal. It’s what I crave. Woke up with a migraine at four this morning. Had to take a pain pill. Wish they would stop. Vision is bad too. Had chemo and immune therapy yesterday. Hope it is working. Hope everyone has a good day
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