peritoneal carcinomatosis
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Great news! Good for all of us to hear. Have fun at The Price is Right!
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Felt good enough to do a little work on my kitchen. Took down cabinet doors on main dish cabinet to show off my vintage dishes. Filled in holes left behind and sanded and painted. Worked on about 5 cabinets. Glad I just finished my project. I can't believe how tired I am. Also feeling like my body chemistry is off. Light headed and just not myself. Interested to see my blood test results on Friday. You guys are awfully quiet!!Are we all just waiting for spring? I think I am. LOL Hugs to all, Cathy
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Cathy - wow, you have been industrious! Glad you had the energy to take upon that project. I'm impressed. I don't think I could do that. Question for you: Can you tell me if you take anything with the Afinitor? My PA said that may be one we look at next. Any distinct side effects?
Artist - how are you? Are your ascites getting better? How is Xeloda treating you? It worked for me for 14-15 months and by then my HFS was bad. These side effects....
Milwmama - congrats to you! We love hearing positive news!
Mirka - sorry to hear about your Mom. Does her MO have another treatment plan, besides Ibrance, that you're considering?
To everyone else - hello! Check in and let us know how you are.
I just had my 2nd infusion of cycle 10 of Halaven today. Next Monday I have a CT scan and then meet with my MO next Thursday to discuss results. I'm nervous as I seem to have some discomfort, no pain, on my right side under the rib cage. I'm concerned something is “off" as it's been feeling like this for a few weeks now. It's probably going to be a long week of guessing what it could be and related anxiety. Ugh.
Saying a healing prayer for all of us.
Southern
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One more I meant to mention:
Dancing - so great that you are changing to an MO in Arizona that is closer and seems very well liked. You are right that you have to develop a bond with your MO and feel like they really care. Very happy that you have come to this decision- sounds like it was a very good one. Keep us updated!
Hugs, Southern
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Hi All!
Cathy, Isn't it a great felling to be able to do something besides couch surf? Today I spent in my studio working on glass projects. Got so much done as I always feel the best the day after my para. Are you on Xeloda? I too get a little lightheaded and off plus lately some heart palps.
It was a GOD AWFUL paracentesis. I had this one Dr. before and forgot it was him until he did the procedure. He is cocky and just rushes through with no finesse whatsoever! He does not give the lidocaine time to kick in, just wham bam, there you go. I raised off the table when he inserted the cath from the pain and burst into tears. Then he asked me if that was worse than my other times. I said loud and emphatically "YES"!! I called the hospital and told them I can't have this Dr. anymore. I think he felt guilty after because he kept coming back in to ask "Are you OK?" To which I basically just glared at him.....
So Southern, basically the ascites keep coming back. I am doing a para weekly now. I wish so much that something would get rid of this. It is my biggest worry right now. My scans came back with some slight progression in my liver, "increase in scattered foci" but the big one is stable as well as everything else, so could be worse. I don't know at this point if he will decide to take me off Xeloda. I hope not as so many women do so well on it and I was hoping to be one. We'll see Friday.....nervous as you are!
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Sheri, I'm on half-dose Afinitor along with Letrozole. I had trouble with both before. Doing better this time. Afinitor side effects are awful. I started off with the regular dose 5 years ago and couldn't tolerate it. You might ask your Onc if you can start on a lower dose and work your way up if you tolerate it ok. I had mouth ulcers that went down my esophagus into my stomach. I got so bloated and hurt so bad. This time a little bit of mouth sores but the steroid mouth wash has made a huge difference. The Letrozole gave me horrible muscle spasms when I took it with Ibrance. But not bothering me so much now. I have noticed that I'm more emotional. Don't know what's up with that. I need to stop watching the news. It just upsets me so much I actually cry over politics. Artist, I had a couple of bad paracentesis too. Always the same person. They kept going in about the same spot and I built up scar tissue. Pushing the needle through that was awful!!! Dancing, sounds like you have great medical options where you live. Kick some butt! My love and very best wishes to all of you. I will see if my daughter can help me post a pic of my kitchen. I love all things vintage and especially 40's and 50's kitchens. My home is over 100 yrs old. I think the cabinets are too!! LOL I just needed to do something that helped me put a smile on my face. WRAPPING YOU ALL IN A BIG HUG!! Cathy
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Cathy,
I would love to see a pic of your kitchen! Thanks for the Afinitor info. I was on Ibrance with Letrozole previously and I didn’t have many SE issues at all. It didn’t seem to be working though (that’s definitely a problem 😥) and then my MO ordered the Guardant360 blood test to see what treatments would work best. The results came back that Ibrance along with Faslodex was the winning ticket for me. So, I switched to that combo and within 3 1/2 months, I had progression. So incredibly disappointing and makes me really wonder about those specialty tests! I have heard about the Afinitor side effects and it does make me nervous. Good suggestion about the lower dose - thank you. It does seem like my MO usually goes with the suggested dose on these various chemos, so that is definitely something to think about.
Sending up prayers for all,
Southern
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Southern, it may be too late but I would ask your MO when he would have expected a clinical response from the Ibrance/Faslodex combo. Both of these are slow to act so making a decision after 3 months seems a bit iffy. The progression may have happened in the early days (month 1 to 2) and then start to turn around. I’ve seen estimates of three months for Faslodex and even longer for Ibrance. It’s a bit of a game of high stakes chicken I know but....
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Hi Sadie,
At the time, I had already been on the Ibrance/Letrozole combo for about 4 1/2 months before switching to the Ibrance/Faslodex combo due to the Guardant360 results. In almost 4 months on Ibrance/Faslodex in early-mid 2017, my TMs then went way up and CT scan noted progression. So, I was on Ibrance for close to 9 months total.
I was already very wary about Faslodex as when I was first diagnosed Stage IV in 2014 (BC was found in my bone marrow,) I started on Faslodex shots. Less than 3 months later, I couldn’t keep any food or water down. Gastroenterologist in town did an endoscopy and found that my duodenum was then 100% blocked. Gastro found no cancer in my biopsies and kept saying it was inflammation and gave me protonix. Almost 2 months later and 40+ lbs lighter from not eating/drinking (truly was kept alive via IV saline infusions at cancer center,) I went to Mayo in Rochester, MN, for help. They diagnosed me with mets in stomach wall. At this point, I will not be going back on Faslodex (and know that I switched my gastroenterologist as soon as I came back from Mayo in 2014. 😀) True or not, I believe Faslodex triggers my cancer. I feel that I’ve been burned twice now. Ugh.
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Wow. I would have likely known this had I looked back. Sorry.
I still struggle with coming to grips with how hard it is to know what the heck is going on from one moment to the next. Until you are in the middle of this you have no idea that the uncertainty is a constant. As I think you know, myCT showed significant progression in my bones in July which my MO dismissed somewhat as he said it is difficult to tell the difference between healing and new sclerotic mets. Then it spread to my belly. Quite the ride!
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Sadie, no apologies necessary! My story is convoluted and truly I wouldn’t expect everyone to remember all the details. Honestly, I think I want to block some of my earlier memories out myself as that was a really rough time. It has
been a long 4 years of Stage IV - hospitalizations, feeding tube, major stomach surgery, several hormonal treatments, several oral and IV chemos, etc.
I’m right there with you that uncertainty is a constant. Looking back, we along with our MO, try to make the best decision at the time. I try not to second guess in hindsight, but of course, things seem a bit clearer after the fact.
Hugs,
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Hello All!! I had a great doc appointment yesterday. My tumor markers have gone from 268 to 66 in the last 3 months since being on Afinitor/Letrozole. I'm on half dose because that's what I can tolerate, but it's working!! Sunshine today. I'm going to get out and enjoy it!! Hope everyone has a great weekend! LOVE, Cathy
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Wow, Cathy - that TM decrease is truly fantastic! I am very happy for you. Thanks for the update and adding some sunshine to my day. ☀️
Sending you a big hug today!0 -
Pictures of mom's kitchen. Got a dish washer too! I am Amanda, Cathy's daughter.
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Great job, Cathy and Amanda! Looks so bright and cheery. Also, I wish my cabinets looked so neat!
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Very cute kitchen Cathy! I love all things retro as well. Great news on the TM's! Enjoy the sunshine...We finally got a sprinkling of snow today.
I think the radiologist that did my last procedure was just in a rush and a bit callous like he wasn't thrilled to be there. He did not even look at the ultrasound screen to find a good spot to enter. Just slapped the paper on, made the incision, gave me a small quick shot of numbing and jabbed the catheter in. It was traumatic for me. It made me remember him from awhile back too. I called today to make sure he was not on call for my next one......
Xeloda is already off my Tx as it is not helping with this issue. I am on to Gemzar......cross my fingers and praying for some relief. I was so hopeful for the Xeloda to keep me gong for awhile.
southern, you have been through the mill for sure. Praying for better days for you!
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Love a good dr appt Retro! Hope it keeps going. Enjoy the sunshine.
Xeloda gave me bad HFS and apparently did nothing because I got mets after going off.
Still doing well on Gem/Cis other than the few days after with fatigue and general blah. Gpes away, but still sucks.
Price is Right Live was fun. Didn't make it up, but had a great time with my daughter. A couple won a trip to Hawaii, very exciting.
Hope everyone is hanging in there. Was spending time in Florida, now back in Wisconsin. Prefer Florida....9 inches or more of snow and cold here. Brrrrr
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Milwmama, How long have you been on the Gemzar combo? Did you start both at once or add one later? Xeloda did nothing for my ascites so I am on to Gemzar and possibly add Carbo later. I am PRAYING that this one helps the ascites and works for at least awhile for god's sakes. Had another pay yesterday with the GOOD radiologist and his trainee. She did a virtually painless procedure as a trainee unlike the last jerk.....Price is Right sounds like a blast!
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Hi all -
Got my CT scan results today and they were pretty good. Results showed some improvements from last June’s scan, so MO was pleased. Honestly, it’s annoying that different radiologists read my scans, so it doesn’t seem like it’s completely comparing apples to apples. They each have their own style of writing. This report was very wordy (my MO said he didn’t like this radiologist so much as she was way too wordy -haha.) My small amount of ascites had completely cleared up - thanks Halaven! So, for now I will continue on Halaven, which is what I was hoping for. I was telling the nurse how weird is was that I was praying to stay on my current chemo of Halaven. How is this my life??
Anyway, will do TM bloodwork at the beginning of next week to see what they are. TMs worry me more than the scan, I think, as they always seem to be right on.
Artist - I truly hope Gemzar is the ticket for your ascites. I’m just so surprised that research hasn’t figured out a med/chemo for this. It’s 2018 - how can this be!!
Milwmama - glad to see you are doing well (it’s all relative, right?) It’s 75 degrees here today - sounds so cold in Wisconsin.
Hang in there, ladies. 💕
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Artist - one more question: have you been on Halaven yet? Sorry - I can’t remember. I did have a small amount of ascites on my June 2017 scan but it was gone with this scan. My doctor was pleased and said the Halaven had to have cleared it up.
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Southern, Good news on your scan! Also, how glorious your ascites has cleared up. This particular symptom is the only thing making my life uncomfortable right now. I can't walk around for very long with the pressure. I get my para every Tuesday, so Wed, Thur, Fri are always OK. But it seems like Sat, Sun, Mon I am back to misery.........I am surprised they don't have much to help this either.
I get annoyed with the different reports too and it sometimes fails to mention previous findings. I have not been on Halaven yet. Maybe next in the arsenal? How are the SE's with that chemo? Can I ask if you are ILC? It seems like ascites is an ILC specific malady.
Enjoy that sunny weather! We are about 60 degrees today which is much warmer the it has been. Going to get outside for awhile!
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Hi all
I am still reading your post a trying to find more comfort with my mom's treatment. Last visit with MO was good, there is no big increase in TM therefore continue with current treatment - Faslodex. Next step will be Xeloda probably or Navalbin.Next meeting in three weeks. Mom had more pain last 2 weeks, went to hospital were doctors "cleaned" her bowel to avoid obstruction. Now she is relatively OK.
This week I made another few steps how to get Ibrance like contacting Deputy of Onco association for Czech republic, also write to Pfizer in USA and tried to get second opinion. Without success, got only psychological help
My question is - is Ibrance suitable for carcinomatosis? What do you think (based on your experince x progression). I understand that each person is different but should I fight anymore?
My LAST option is only to ask Ex-Ibrance woman to sell/ send me the pills which they do not use anymore. I know it is strange and unethical but hopeless people make strange things.... or to give it up a believe to treatments that are available now.
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Artist-started Gem/carbo together. Did it for two rounds, then onc changed to cisplatin.
Started mid Oct 2017 for mets.
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Wow Artist! Hope Gemzar works for you. Ascites is just awful. I, too, have lobular breast cancer. The last time my tumor was tested, they mentioned some ductal as well, which was new to me! I can't imagine weekly ascites removal. How miserable. Hope Gemzar kicks ascites' butt and works quickly!! Sheri, way to go on your tests! So glad Halaven is working for you. It was pretty hard on me. Never been sure it worked for me. If you go by side effects, it was awesome!! LOL I have had acne and a rash on my face and chest the last 10 days or so. I feel pretty.... LOL We have company coming today. My brother-in-law. His wife and my friend, Jean, died last June. We have been cleaning the house before his arrival. So wish I could just keep up on it better. I just never know how I'm going to feel. I do a little and get worn out! My Dad who lived to be 98 always said you gotta keep putting one foot in front of the other. Even with heart issues, he never gave up. Not having partial bowel blockages...I start with symptoms and they resolve before they get that far. I am however periodically vomiting out of the blue. Usually after I have hot chocolate. WEIRD! Not giving up chocolate!! Love all of you ladies. Couldn't get along without you. Have a wonderful weekend. HUGS, Cathy
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milwmama, why did your Onc change so quickly? How long it it supposed to take for results to show? How is cisplatin treating you?
Cathy, yes the once a week gig is getting hard mentally. I so need a break from these ascites...So sorry to hear about your SIL and friend. I too get exhausted after just a small amount of "chores". Tried pushing around the vacuum and it did me in for the day. I like your Dad's advice!
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I was having a hard time with Carbo. Low counts and general blah. Both being platinum based he opted for Cisplatin thinking it may have a slight edge over Carbo. Other than that no real reason. I was shocked at the treatment time difference. Went from a couple of hours to SIX!! Have to have a crapton of fluids pushed through as it is harder on the kidneys. Still have the blah but now every two weeks with neulasta after treatment so counts are way better. Was as low as .47 on ANC. 😵
So far so good. Did have to have some magnesium last time as mine was low. Hopefully that a a one time thing. Have scan again about late March, early April to see how things are going. More decreasing would be lovely
But, I will take stable.Totally understand the low stamina. Tried to put holiday decor away in lower level. Couple of trips up and down the stairs and I was done. That is what frustrates me. I have always been able to do these things around the house and now I'm gassed quickly.
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Good morning!
Artist - I do have ILC. I’m finding the side effects of Halaven manageable. I rest more on Days 3 and 4, as those are the worst. I’m quite fatigued (had 20 infusions now) but still able to function pretty well. I like this chemo as I have almost no nausea, unlike Xeloda, which is huge to me.
Mirka - yes, Ibrance is a suitable option for us, but it really didn’t work too well for me. My TMs had jumped up from Xeloda then I went to Ibrance. I was stable for about 8 months with thehigh TMs. My TMs really never went down and then were trending up at 8 months and I had a CT scan which showed progression. I did have little side effects on Ibrance, so I really liked being on it. Too bad it didn’t work.
Cathy - I have heard about Afinitor causing rashes. Good grief - who needs acne at our age?? I’m just so happy it is working for you. I wonder what’s up with the vomiting. Hope that subsides soon.
Milwmama - I had a hard time in gemzar/carbo too, and my MO thought it was the carbo. I was also on a feeding tube at the time, so everything was kind-of wonky anyway. Glad the gemzar/cisp is doing it’s job.
All of us seem to be fatigued. It’s just hard being on some treatment constantly. I was even tired on my off week this time and usually that week is better. We do put up with a lot of crap with this cancer.
Time for me to get in the shower. Meeting friends for lunch, which is always fun.
Hope y’all have a good pain-free day today.
❤️
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Milwmama, Six hours...OMG. There's a whole day shot right? Hope you get in a lot of reading or bring your laptop to watch a movie? At least the counts are better.....I have heard Carbo is a tough one which he may add to my regimen eventually. My fatigue limits me so much too. Today is the day after my paracentesis so I feel much better and actually cleaned out my fridge and got some laundry done. Tomorrow should be good too so need to decide what to do with myself.
They FINALLY approved my cobra so have insurance again. Now trying to get my Onc office to call me back and schedule an appointment for new treatment as I am 4 weeks out from quitting Xeloda. What the hell is the holdup???? Time to call AGAIN!! UNACCEPTABLE......
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Morning, Artist hope you got that appointment! Having insurance issues myself. Always something with us. Milwmama, can't believe the 6 hours. Hope you really like the nurses who give the infusions. Helps so much with attitude. I've been known to get them all dancing with me. I figure if I have to be there, we might as well make it memorable!! Haven't had infusions for awhile. First Xeloda which was a terrible fail and now Afinitor which does seem to be working. I'm very lucky that my cancer seems to be not that aggressive. It pops up, causes trouble, we beat it back. Does seem like the times the treatment doesn't work that it gets harder to beat it back. Maybe I'm just tired!! I have to remind myself sometimes that I'm fighting as much for my family as I am for me. Sometimes it feels like it would just be easier to let nature take its course. OKAY, over feeling sorry for myself. Woke up with tummy pains today. Don't know if it will work itself out or make me miserable for a few days. Crapshoot. MY LOVE TO ALL OF YOU! Cathy
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This episode was a doozy. Finally ate something after 48 hrs. Starting to feel better. Party on!! Cathy
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