peritoneal carcinomatosis
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Hi all - I wrote a long post last night and just realized this morning that it never posted. Ugh!
Just wanted to check-in and say that Mayo appointment went OK Thursday afternoon. Honestly, I didn’t learn anything I didn’t already know. The oncologist recommended Navelbine or Doxil as next chemo. My MO was suggesting Navelbine, so that will be up next, starting Wed. Sept 5th at home. Cathy, I know Navelbine worked well for you, so that gives me hope. I didn’t match any of their clinical trials, which was what I expected anyway. I’m too heavily treated at this point so won’t qualify for many trials. It wouldn’t have really been feasible anyway living in Texas. I’m doing a biopsy procedure Monday morning at Mayo, so driving back to Mayo tomorrow from my parents home 3 1/2 hours away, in order to see what my cancer properties are now and the mutations. Hopefully all goes well with that.
We also discussed my latest scan in late July and the fact cancer has infiltrated many of the open areas in my stomach. I’m now noticing pain and discomfort below both my breasts and ribs. Just a full feeling all the time and my upper stomach has started protruding a bit. Could this be ascites or just the large lymph nodes or cancer? I’m not sure. I should have asked Mayo oncologist but I did say my stomach is protruding.
I can tell my cancer is progressing being on no treatment (in addition to the time Halaven wasn’t working) and I pray I can feel OK my next 1 1/2 weeks until I start chemo. It is really worrisome, especially as I’m having these symptoms. I’m wishing I could’ve start chemo earlier but not feasible now.
Hope each of you are doing well. Keep providing updates - always enjoy hearing from you. Will check-in again soon.
❤️ Sheri
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Sheri, I'm so sorry you didn't get more new info. But I am very glad you will probably be starting Navelbine. I was on it when I had gastroparesis (my stomach didn't empty) and first stages of intestinal involvement. It really did help although it took awhile to feel it....maybe 6 weeks or so. I just suddenly realized the abdominal pressure had lessened considerably. I'm so sorry you are so uncomfortable right now. Hang in there. My upper abdominal area protrudes also. It gets really bad when the ascites builds up. I'm sure some of it with me is due to weight but I'm also sure some is due cancer. It feels a little sore all the time now when you press on it. I am continually amazed at how resilient we all continue to be and how well we advocate for ourselves. Sending love and hugs your way!! Cathy
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Sheri - I am also sorry you didn’t get anything new or a great clinical trial option from your Mayo appointment but I think it was good that they confirmed the next chemo that your MO recommended. I am amazed at your energy in being able to move your son, fly to your parents and do 2 driving trips of 7 hours RT to your appointments. I get worn out just from going to my local medical appointments.
What type of mutation testing are you going to have done on your biopsy? I did Foundation One on my initial biopsy; not sure if it is worthwhile to do it again on the new gastric cancer cells. They art different in that they are PR - instead of +.
I had a PET scan the day before my first Doxil infusion. The good news is that nothing new or unexpected showed. Also it did show cancer in nodes on my stomach though not in the area that is causing my blocked pyloris. My MO said that she thinks we can still use it for monitoring and assume that if the areas we can see shrink it would indicate it is working everywhere.
I am slowly working to rebuild my strength. I’ve been able to walk up to half mile at a time once a day and slightly less if I do a second walk. Today I tried walking a bit farther with my daughter and was really winded but I think that may have been because we were walking faster than what I’d been doing on my own. I’ve got some time off the tube now and it feels so wonderful to be outside walking. It’s amazing how much I appreciate some very simple things now.
I really like reading everyone’s updates. Thanks to all for your support.
Barb
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Sheri, you've been on my mind a lot. How did the biopsy go? How often do you have to go back to the Mayo Clinic or at some point will they talk to you by phone? I had shooting pains in my abdominal area yesterday. Ended up with intestinal issues today. Finally took drugs to feel better. I hate to over medicate but sometimes I just get tired of not feeling well. I no longer have regular bowel movements. I hardly even remember what that was like. But....I am still here and enjoying the beautiful days we've had the last couple of days. Does seem weather has started to change already. Makes me sad. I'm not ready for cold!! I wanted to get out so much more this summer but it just never really worked out. My husband has had a lot of back issues so that has kept us close to home. I travel to Idaho in 3 1/2 weeks for a memorial for my sister who died last December. It will be nice to see family but will be very sad and hard for me. I start cycle 5 next week and will have more follow up testing after that. So glad CT scan looked better. Thinking of you all. HUGS, Cathy
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I looked up my scan results last night. My mo hasn’t called me yet so I was anxious to know. It said everything looked the same as last time except there is ascites in several places. I have never had them so don’t know much about them. Does anyone know if they can up your tumor marker and is there anything I can do to get rid of them? Always something new to deal with .
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Hi Dianarose! Good morning. I think ascites can affect your tumor marker test. My Doc uses the CA-125 (ovarian cancer) on me because it has gone up and down pretty much on cue with my symptoms. I'm sure ascites must cause inflammation which then would affect your tumor marker. I'm on water pills like Lasix and also every few weeks I have to go in and have the fluid pumped off with a procedure called paracentesis. It's only a little uncomfortable and takes less than an hour. They usually wait until there is enough extra fluid that you feel uncomfortable. Unless you are on a treatment that slows it down or stops it from forming, you have to do this every time it builds up pressure. I had it frequently 3 years ago and then it stopped with treatment. It started up with me again last spring. I couldn't figure out how to personally message you with the clinical trial info. Hope you saw the post and that you got the information you wanted. HUGS, Cathy
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Thanks for the information Cathy. I did look up the trial and the closest one was Pennsylvania. I’m in Maine 😰. Is the trial working for you. What were your tumor markers when you started the trial? My stomach isn’t uncomfortable unless I eat a big meal but I do have more of a belly then a couple of years ago. Doc hasn’t called about my scan so I’ll assume she’s probably keeping me Xeloda till she does another tumor marker next Thursday. I really want to be able to stay on it. So much easier then infusions plus I have hair.
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Hi Dianarose! It's always nice to have hair!! I have a full head right now and I'm really enjoying it! So glad the Xeloda is working for you. I was on it 5 years ago and it worked well. I tried to start taking it a year ago and I just couldn't tolerate it. Thought it was the cancer at first but when I went off of it, my crazy intestinal symptoms stopped. You could hear my stomach gurgling for a block. I felt like I announced myself everywhere I went. My tumor markers have gone up but it would at first on immunotherapy. Hoping it means that something is working. My symptoms keep changing on me lately. I am not having the episodes like I was (partial bowel blockages) but now I'm getting lots of intestinal cramping. It has actually gotten painful as it also puts pressure on my rectum. Hoping it's not a sign of future issues. Other than that, I've been feeling stronger and better. If this cramping becomes more prevalent I'm afraid I will get more fragile again. Hang in there! Hugs, Cathy
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Hi all - checking in on everyone. Isn’t it crazy how daily we can get different side effects of the cancer or the treatment we are on? I feel like we are all playing whack-a-mole!
My biopsy procedure at Mayo went fine. They actually went through my back to get to the largest lymph node in my stomach, as they said that was the safest way. Took 10 samples, although apparently the first few weren’t “good” as I think they had to find the right spot. Also, 2 of the samples were for this experimental research that I agreed to participate in. Great probability that it won’t help me but hopefully it will help some down the road. I should be finding out by tomorrow if my cancer is still ER+. They are sending the samples to Tempus, who is the company who Mayo works with now (they used to work mostly with Foundation One.) Results should take 3 weeks.
Mayo was interesting. Doctors are very knowledgeable about cancer but I have found they don’t always follow their own processes. When I had my doctor appointment last Thursday, the first doctor said they didn’t have my medical records since 2014 when I was at Mayo last. I had to walk them through my experiences and treatments for the last 4 years. They did have my scan images which are sent after they agree to see you.
Well, I know they had my records as Mayo won’t even set up an appointment without them, which I told the doctor. I followed up after my appointment and they said they were in my profile (45 pages) and were scanned in on 7/25/18. So, they didn’t prepare for my appointment beforehand at all. Hmmm.....
Then, the oncologist acted surprised that I was there for a biopsy even though I stated that in the 1st question of their questionnaire, along with wanting a second opinion. I even confirmed it the week before I left for Mayo. Not happy about that at all but he did agree that it was a good idea and set it up for the following Monday. (After he asked if I wanted to do the biopsy at home in Texas, which I said if I wanted to do it at home, I would have already done it.) Ugh. I think sometimes big cancer centers are very bureaucratic.
More later - enjoy reading all your updates. Still at my Mom’s in South Dakota until Sunday.
Hugs to each of you!
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Retrocath just wondering how my ice/ salt helped with your little friend?
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70Charger, Hi! Thank goodness it has helped. I continue to have unusual intestinal habits so it's hard to keep it from flaring up again. So far so good! Thank you for the info! Sheri, doesn't It just drive you crazy when you think you have everything worked out and planned out and then the "powers that be" look at you like, huh? I have to explain to my nurses every treatment I have on this clinical trial. I remind them what the protocol is because I am the only patient here doing it. Unless the head of clinical trials is there to tell them, they tend to not understand her written instructions. LOL Feel like I'm being helpful. Tummy ache tonight. My gut is huge! Hope everyone is doing well tonight! HUGS, Cathy
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Well, it just goes to show that I can never predict what’s going to happen with my cancer. Got my prelim results of Mayo biopsy that shows ER slightly +, PR -, and HER2+ (3+, which is very positive apparently.) My cancer has changed as it was ER+ (very), PR+, and HER2-.
My MO and the Mayo doctor are actually very pleasantly surprised as Herceptin is a great drug for the HER2+ cancer and works very well in combo with Navelbine. My MO is working on the insurance for Herceptin today, so I can get chemo next week.
Honestly, I’m quite shocked and I don’t know anything about HER2+ drugs, besides hearing about Herceptin. My biopsy was only one lymph node, so other lymph nodes could still be ER+, which is why the combo drugs at this point. I just talked to Mayo doctor and he said this change is a good thing, as now this opens up more drugs for me to fight my cancer. He said this change doesn’t happen often but does happen about 15-20% of the time. So glad I decided to do a biopsy! This cancer is so sneaky.
My upper belly is still distended and I can’t wait to get on chemo. I know - who would say that!! But I’m tired of being uncomfortable and feeling bloated and full all the time.
Hugs to each of you! 💕💕
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That is great news Sheri about your cancer becoming HER2 +! That is what my oncologist was hoping for with my biopsy but mine only changed from PR + to PR - so I am now Er+, PR - and HER 2 -. She also commented that it is kind of rare for cancers to change on that. Hopefully your adding Herceptin treatment will be approved very quickly now.
Cathy i’m glad to hear that you are feeling stronger and better. Your clinical trial is also being done at a clinic in Northern California aboutt 1.5 hours from where I live. I’m interested in looking into it if the treatment I’m on though doesn’t work to clear up my stomach. I’ve only had one treatment so it’s too soon to tell any impact. My tumor markers were at the week after I started treatment so I’m not sure what that’s about. I’m wondering if the treatment could cause some kind of a flare up.
Overall I am doing better at coping with my tube feeding and trying to get my strength back. I’m slowly adding on to the amount that I am walking each day. Tomorrow evening we are going to go to the last summer outdoor play that we have season tickets to which should be an interesting excursion. I missed the others, one when I was traveling just before all my recent stuff happened and one just after I got out of the hospital. The following weekend we plan to go to the beach in Monterey California and stay a few days. Being by the ocean should feel very healing. Then it’s time for my next chemo treatment.
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Hi Barb! It's awesome that you are able to get out and walk. A play and a trip to ocean---wonderful. Sounds like you are living your life to the fullest!! The clinical trial is in Santa Rosa, right? We lived for a short time in the San Lorenzo area while my hubby worked for a company in San Jose. We couldn't even begin to afford a home there now. I loved the time we were there. Rode BART into SF a few times and to the antique market in Berkley. Love Oakland and took a short trip to Santa Rosa one day. It's the town in my favorite Alfred Hitchcock movie, "Shadow of a Doubt." It was shot there in the 40's. Looks nothing like that now. LOL Beautiful area. Sheri--just WOW! It's impossible to guess with this stupid cancer, isn't it? What a change! I'm so excited that you get to double whammy that cancer with both treatments! You might not feel too great on Navelbine but it will be worth it in the end. You must be exhausted after all the driving and extra stress of the past couple weeks. Hope you got in a nice visit with your parents. I bet it was good for them to be part of your cancer battle and feel like they were helping. I really miss my parents....thank goodness I have the great support of my kids and hubby. Hope you all have a wonderful weekend. HUGS, Cathy
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Barb - I think you are doing so well on the feeding tube. Good for you for walking and keeping your strength up. As someone who has gone through this and knows exactly how hard this is, I'm in awe of you!
Cathy - thanks for the shout out. Sounds like in general you are feeling better for which I'm so glad. Was your Navelbine 3 week starts on, 1 week off? Would love to know what side effects you experienced.
It's September already - wow! Where did the first 8 months go??
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Hey Sheri! I was so sick the first time I was on Navelbine it's hard to know what was from the cancer and what was treatment. What I remember most was being headachey and tired. I also had some neuropathy in feet. I think I was doing 2 weeks on and 1 week off. I have a tendency to have toxicity issues from chemo. My white blood cell count was frequently really low and sometimes I had to skip more than a week. I also had to get a shot to try to keep my blood counts up. That caused me to have a very achey back. I found it interesting that Navelbine is made from periwinkle. I thank periwinkle every time I see it growing! LOL I wish you so much luck with it. I think for most people Navelbine is considered to be one of the easier treatments. Hopefully you will be one of the people who find it to be fairly easy. Keep us posted. Hugs, Cathy
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Sheri thanks for your empathy regarding learning to live with this tube feeding. Sometimes I feel like such a whimp, everything seems so hard and it’s hard to motivate myself to get off the couch and do anything. Also I tire out so easily. I feel like I can only manage to do any major (by major I mean something like go out to a movie) activity every other day and need a rest day in between. I did make it to the outdoor play Saturday night, really enjoyed the show and had a great time, I was nervous because it was a slight uphill walk to get there and then down a bunch of stairs but I made it fine though slowly.
Cathy that is amazing that you lived in San Lorenzo. I am in Pleasanton, fortunately bought a condo 20 years ago or no way could afford to live here. I do like the Bay Area but also like the Pacific Northwest.
Good wishes to all.
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Good Evening my Lovely Ladies
Just back from a road trip south to Sydney to visit our eldest daughter who bought a home in February which I had not physically seen due to being too ill to travel until now. So liberating to travel ‘for fun’ rather than only medical appointments!!
Sheri - Wow!! Positive news - fantastic!! Your Mayo visit has certainly been beneficial and worth your extremely uncomfortable and stressful wait if I understand correctly?? Heaps of luck with your new treatment regime.
Cathy - how is your tummy? Is your diet affecting your tummy pain? I find that if I ‘stray’ from my boring ‘white nutrition free’ diet I certainly suffer.....swollen, painful belly and the bowls really ‘go on strike’!! Just gotta love these Belly Mets....!!!
Barb - I have written previously what a ‘lazy slob’ I am. I am mentally motivated but alas my body has other ideas. I spend many hours lazing about when not attending medical appointments. As you say, I too only manage anything ‘substantial’ such as lunch out, movie etc every other day and need a ‘recharge day’ in between. I have found this fatigue one of the most difficult SEs to come to terms with as I previously was extremely active. However, we are all still ‘on the right side of the grass’ - wonderful!!!
September is Spring here in Australia and a glorious season with warmth, new life and beautiful blooms.
Wishing everyone an extra ‘special September’,
BIG hugs, Jane
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Hi all - welcome back, Jane. Sounds like your wonderful trip was just what you needed!
Barb - good idea to plan an activity one day and rest the next. The problem with the feeding tube is we really don’t get all the nutrients that we need to thrive like we do from food. That’s what my surgeon said in 2015. Therefore, it’s important to conserve the energy to do the things you really want to do. Honestly, I do the same thing for myself still now as I’m so fatigued.
Well, my infusions of Herceptin and Navelbine didn’t go as I planned. Started with the Herceptin, which was a drip over 1 1/2 hours. My DH had bought us sandwiches, we ate, and then he left run an errand. All of a sudden I got the worst stomach pain during the infusion. No sharp pain - just pain of about an 8 on a 1-10 scale. Oh my, it was bad. The chemo nurse, with doctor approval, gave me Ativan, more steroids and had already given me Benadryl when pain first started. They had to stop the drip for about 40 min. Ugh - stomach hurt so bad. Good news is the meds they gave me helped and I finished the Herceptin, then the Navelbine. Feel OK tonight, at least no pain like this afternoon.
I’m wondering if I have some blockage. MO has ordered an ultrasound (no date yet) and they will also do a paracentesis if necessary, as my stomach is about that of a 5 months pregnant lady now. So, obviously, I’m uncomfortable anyway. Cathy, is this the type of “episode” that you have? Scared me to death. MO, PA, and nurse didn’t think it was the Herceptin, but it’s a little coincidental to me.
You are each in my prayers tonight. Love to all 💗
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Sheri, I agree. Sounds too coincidental to me too. I'm surprised they went ahead with everything. I sure hope you do ok. Sounds like medication was too hard on the lining of your stomach or something. Wow, that would really scare me. With my episodes I don't get a pain like that....it's more like flowing and revolving internal gas pains that get worse and worse until I relieve the pressure...either from vomiting or diarrhea ...usually both. My episodes have now changed and have become low grade stomach aches that I get most of the time. I only go in little bits and I never know when that's going to happen. Sometimes when I'm not expecting it which makes life exciting!! I'm supposed to get an ultrasound for my gut and liver on Friday morning as I've been in the midst of this partial bowel blockage for about 4 weeks or more. It's like it alleviates for a couple of days and then takes off again. Finally told nurse yesterday as she was doing my blood draw and she told me it sounded like a partial bowel blockage to her and to tell my Doc, which I did today. Doc told me today there is really nothing they can do about them....just make me comfortable. Jane, I'm so jealous you are getting spring. I feel like I lost the summer and would like to give it another try!! So glad you got out. I've heard Sydney is wonderful. Speaking of Australia....are any of you familiar with the standup comedian, Jim Jefferies? He's fabulous...raunchy but fabulous. He talks about he and his son both getting food poisoning...1st his son and then him. He awakens to his son's cries and finds him vomiting and having diarrhea and carries him to the bathroom and puts him on the toilet. After a while of this, his son looks over at him and says, "This is me now." Like this is what has become of his life. It really made me laugh because after all the partial bowel blockages...throwing up in a bowl while having diarrhea, I realized that is exactly how I felt. THIS IS ME NOW! But thank goodness I'm still laughing. LOVE TO ALL, Cathy
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Where is everybody?? Had an ultrasound this morning and going in for paracentesis this afternoon. Crazy week. HUGS, Cathy
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Hey Cathy - you certainly have a great sense of humor. I don't know Jim Jeffries but he sounds really funny.
It's Day 3 after Navelbine & Herceptin infusions on Wed and I'm exhausted and experiencing chemo crash today. Haven't done a thing. My stomach is bloated and feels so big. Still waiting for MO office to call me with ultrasound and paracentesis appointment. Can you tell me what to expect with the paracentesis procedure? Does it hurt?
How are you feeling? I'm sure you are happy to do this procedure before the weekend so you'll feel better. I hate this big full belly - not fun at all. Is the paracentesis something you can continue to do with no body damage and do you always do an ultrasound prior to the paracentesis?
Sorry about all the questions. I just have no idea what to expect.
Hugs to all-
Sheri
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Hey Sheri! The room you have the paracentesis in is an ultrasound room. They check to make sure there is a big enough pocket of fluid to stick a needle into. This keeps them from accidentally poking something they shouldn't. THEY ARE VERY CAREFUL!! They usually take mine out of the right side 5 inches to the right of the navel or there about. Sometimes they have you turn on your side just a bit to get the fluid to pocket in one area better. They deaden the area before they insert the needle. I don't watch so I don't exactly know how it works except that a small pump pulls the ascites out of your abdominal area into jars about a liter at a time. I average about 4 liters every 5 weeks. It usually takes from start to finish about 45 minutes. It's not fun but nothing as bad as most of us have experienced. It's NOT a procedure you can only have so many of. I have heard if you are pulling off a liter or so a day, they will implant a device so you can do it yourself at home. You will lose about 2 lbs for every liter removed. It's one helluva diet plan. SO I had one helluva day. Nothing showed up unusual on my liver test even though enzymes have gone up 5 fold in a few weeks....and then I didn't get the paracentesis. Even though my gut is sticking out like I'm 7 or 8 mos. along, they couldn't find that big enough pocket of fluid to insert the needle into. So I went in for nothing. I've been rescheduled for next Thursday. My pelvic area is made for having babies. I always have a lot of fluid hiding. I am so tired I just said fine and left. Better safe than sorry anyway. I definitely have some kind of inflammation somewhere. I'm just at a loss. Everyone in oncology is wonderful to me but sometimes they just don't have answers. Feeling frustrated but grateful nothing new that was bad showed up today. Also, since I didn't have the amount of fluid they expected, maybe the trial is working???? Maybe I'm getting weird side effects from trial and that's what's causing the enzyme issues? Hoping for the best. Thanks for letting me vent. It helps to put it out there and then I'm more able to think it through. Hope everyone has a great weekend. Sheri, I so hope you start feeling better. Navelbine for some people is a breeze. It wasn't so much for me but was exactly what I needed. I really hope it helps you! LOVE, Cathy p.s. Between chemo brain (permanent now, I think LOL) and my eyesight, I am continually appalled by my spelling and typos. I hope everyone forgives me. I used to be smarter than that. Now I'm just glad to be.....
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Hi Cathy and Sheri,
I feel a bit of a fraud lurking here as, so far, I have not had to deal with all that you are experiencing. I guess it might come at some point as I do have issues with cancer in my belly. It makes it hard for me to know what to say. Just know I am in your corner and hoping that things will turn around for you both soon.
Hugs. Pat.
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Hi My Lovely Ladies
Sheri - ouch - I agree with Cathy - your pain seems a tad too coincidental.....perhaps a combo of the drugs and sandwiches reacting in your tummy...? I hope that you never again experience such intense pain. Nasty.
Thank you, the trip was a fabulous escape from the 'reality of our life'.
Sheri and Cathy - Heaps of luck for your paracentesis. May it provide you both with the relief and comfort you need. I suggest that you both pack your knickers and toothbrush and head south to Australia.....sunshine and huge doses of laughter are needed!!! Yes, Cathy, Sydney is a wonderful city with something for everyone. I also have never heard of Jim Jeffries so shall follow up. Laughter and best medicine.......we all need loads.
Cathy - I feel very positive for your trial. Your different SEs are perhaps a good sign that your body is responding positively particularly if nothing negative has been identified. Hang in there you wonderful, optimistic, lovely lady!!!!
Pat - wonderful to hear from you and so pleased that you are feeling well. Great news
Had my regular blood transfusion yesterday. As always I asked for the donor to be a hunky, spunky young fit surfer guy......AND as always the Onc nurses just laughed and walked away.......Oh well - we all need to fantasise at times!!
Sending healing and comforting hugs to all,
Hugs, Jane
P.S. Cathy - what spelling and typos....????
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HA, Jane! You wouldn't believe how much I go back an reread what I have written and have to fix it and then after I post I still see mistakes. As I'm typing, I'm getting more phonetical and taking the first their, there, or they're that pops into my little pea brain. Quite hilarious really. I'm with you on the hunky spunky surfer guy! Can't hurt to wish! Pat, it's amazing to me how many of us feel like frauds part of the time. Just walking into oncology and seeing patients in much worse shape than me or hearing someone's story who is in bad shape can make me feel like I'm a fraud. During the time we thought it was only in my bones and I didn't have much side effects from it (some times it was also awful), I felt like a fraud. I was being treated for the bone issue when a really lovely lady I had just met suddenly got so bad she passed away. She was only 42 and had a 10 year old boy. What you are going through is your experience for now. Everything unfortunately changes for most of us. Enjoy the times you feel less bad and never guilty about the chances you get to really enjoy your life. That's one of the things that truly helps to keep you going when times are worse. Sheri, hope you are feeling better today. Wish I could give you a big hug. Love to all.... Cathy p.s. got ultrasound result last night. No tumor in liver. Those of us with lobular cancer knew that!!! Kidneys look better too. I do have a "moderate' amount of ascites. I knew that too!
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Jane I wish we could all come visit Australia. I’d love to see your beaches and your spring sounds glorious.
Sheri I hope you are feeling better and recovering from a scary infusion with the stomach pain.
Cathy your results are sounding good. I hope the acites get under control.
Pat I echo what Cathy says, enjoy and do as much as you can during the times you are feeling relatively well with less side effects.
Barb
We are off for a road trip tomorrow, the first with all the feeding tube equipment, food and liquid medicine. It will be fun to be somewhere different for a few days.
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Thanks all. I am doing what I can while I can. Don’t doubt that. (My focus these days is getting rid of the ridiculous amount of excess in my house - thanks to a collector mother - and renovating my house to make it sales ready just in case plus more comfortable in anticipation of what’s to come.) It’s just a funny place to be. I suspect there must have been a lobular component to my BC that went undetected. Definitely early signs of belly met issues but it’s a slow moving beast.
Wishing you all a painfree and relaxing rest of the weekend. Time for bed now.. I’m beat!
Hugs.Pat
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Good Evening Beautiful Belly Mets Buddies......
Cathy - YAHOO!!! Fabulous news re: your ultrasound result! Such a relief to know that the nasty bu..ers have not marched into your liver and that your kidneys look better. Cause for celebration. I am so very happy for you. I am a 'Lobular Cancer'gal. Sneaky, sneaky BC to have......
Barb - what a dream it would be if we could all get together and bask on the beach, sipping whatever takes our fancy and lettering the warm waves wash over us as the sun keeps us toasty. Yes-I am particularly lucky as we live very close to one of Australia's best beach areas called Noosa (we live in the Noosa Hinterland on 3 acres). I say to everyone that 'we live in Paradise'. Just as well as I do not get to leave it very often these days.......Oh well.
Wishing you a wonderfully relaxing, happy pain free and safe road trip. Enjoy!! It is so liberating to get away.
Pat - sounds exhausting..!! De-cluttering can be a significant task. There are people who have turned it into a business here - hire themselves out to 'de-clutter your home'..... New profession for you???? It is wonderful that you are making the most of your 'good time'. Our roller coaster life with belly mets quite often does not provide us any warning. Enjoy every moment you can. It gives us 'heart' and keeps us going when one of us is doing well so please keep up the good 'work'.
Sheri - hope you are feeling better and a tad stronger. Have you had your paracentesis yet? If so I hope it was bearable and you did not suffer. If not,I am so very sorry that you would be feeling so uncomfortable. It is a truly ghastly feeling. Gentle hugs to you.
We all have to keep 'on the right side of the grass'!!!
Loads of love and sunshine to all,
Hugs, Jane
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I have been a lurker on this thread for a year now. I might have posted a few times. My current chemotherapy is working according to my scans 2 weeks ago. In the scan they noted that I still had ascites from my periotenial mets, which I did not know because I was last drained in December 2017 & we would go to Interventional Radiology weekly to check on the fluid and none accumulated by March 2018. My giant abdomen also shrunk and I was finally able wears jeans with comfort.
My belly remained a slight bump all summer but it was still visible in tight tops. Looser tops hid it well and I felt confident that the fluid was not returning.
It turns out my cancer shrunk ALOT and the bulge was mostly fluid and not the 2 giant 10cm tumors in my periotenial lining. The recent CT noted differently so my oncologist and I figured “hey let’s get this drained and over with.”
In the meantime I ended up with neutropenia and pnemonia so I was hospitalized. My doctor figured that since I was admitted Inpatient on Thursday, I could get the drainage done here and then when I am discharged I would be flatter, not neutropenic and not sick with pnemonia. So I had it drained this past Friday and 1.4L came out and I felt soooo great!
I woke up yesterday feeling like the drainage site had a palm size fluid pocket underneath and the RNs and My oncologist looked at it and said it’s peobably left over fluid. The day went on and I was walking my laps in the hospital to stay active and then lunch came and I was also due for another dose of Vancomycin. I sat down and did some crossstitch and then got nauseated from the potassium supplement I had to guzzle down that morning because my potassium was low and antibiotics make me nauseated. I also felt this HUGE urge to pee. I had went to the bathroom a little and I know the feeling of bladder fullness is a sign that the ascites are back in my belly. I was so fixated on the nausea that I didn’t notice that that small pocket of fluid now also formed a pocket of fluid in my lower abdomen and fluid/swelling of my vagina. I had my nurse come in after I discovered this and she said it’s probably due to my organs moving around after months of being stuck with the ascites and now more fluid was released. I felt and looked worse.
The odd thing is that the paracentisis was only done bc the CT scan noted it and my team at Sloan felt that we should just take care of the annoyance and allow me an even better quality of life.
My CT scan from the pnemonia also noted ongoing improvement in my cancer even from two weeks ago, so I was seriously confused.
How come I came here feeling OK excited to maybe have a almost flat belly again, but in general I was ok with the baby bulge. Now I feel more discomfort and gross and it’s Sunday in a hospital. They claimed I was going to get a paracentisis today and no one is in Interventional Radiology at this time. My AM nurse called. Yet last night my night nurse said I was scheduled to be seen by them today and no one is there and I am still not scheduled with a time for the procedure.
1. I am angry that I even got the stupid paracentisis “for good measure” because it opened up more fluid pockets and I look worse.
2. How come my cancer is improving and I still have ascites? It’s a literal annoyance why the heck won’t they just dry up again!
3. I was supposed to go home today but I am stuck here being told two different stories about getting this paracentisis done.
I don’t want to stay inpatient for just a paracentisis but I also do t want to go home dealing with this discomfort anymore.
Sorry I needed to connect to someone. I’ve been sitting here since yesterday with my husband on and off crying about it. I am literally so sad and depressed.
How come I finally get good scan news and get a simple procedure done and it just happens to get worse over the weekend. I expected that if it did start to fill again it would take at least a week, not 24hours cr
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