So I am off verzenio and suddenly feel really well! So well that I am dragging my feet on starting Xeloda and facing hand foot etc.
what what all do right away to prepare for potential issues? I lready have in grown toes and am afraid that will balloon into a bigger problem… foot dr? Any creams you may suggest? I have a 6 week hiking and biking trip to NZ and of course I am anxious.. in my head I’m saying “how the hell is that going to work out in one month?”
I was si happy for my bone only disease to go on forever but wasn’t surprised about liver and that it’s wrapped around my bowels and all over as I felt really bloated and unwell. But I got a clear pet scan just a few weeks ago… but had an abdominal CT scan this week in prep for ovaries out… and there it all was. So now I am praying that Xeloda will work to slow this train down. My oncologist called the night before surgery having gone down to the radiology reading room and gave me a call with the bad news and formulated a plan. And still encouraged me to leave in one month for my long dreamed for trip to NZ with my husband, BFFs and sister. I am lucky to have an oncology team in NZ to take over of things go south. So I am so happy even though this is all very dire news. But my daughter molly ( from last years Time Square billboard is home for Xmas so how can I be sad?
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Bettybuckets
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You're allowed the typos. Even though your news is dire, I get such a kick out of your reference to peeking under the hood. Thanks for the humor. The more we can spread it around, the happier all of us will be. Of course you will be trapsing around NZ and will have a wonderful time because you are you.
I am so sorry to hear the news. The PET was clear? and CT showed a complete different picture. That is very, very scary!!! Sending positive thoughts! and YES! go to NZ and make the most of it!
that was because it was lobular and had been giving me clear PET CTs since last feb when a CT scan after a car accident showed the opposite. So now looking back they clearly see that the spread was there last feb but we kept going all this time because the PET showed nothing. Lobular cancer apparently grows in sheets be clumps like Thr more common ductal… and is hard to see.
yes, I have lobular as well. Very sneaky. So sneaky in fact 2 oncologists kept sending me home because my PET and bone scans didn’t read it. Only MRI and CT show it. Why are their oncologists who don’t know this about lobular? Good news though — Now there’s a new scan the FES PET/CT. It tracks the estrogen uptake and shows lobular cancer much better. I had my first in October and my next one will be early January. Love your spirit BettyBuckets! We have bikes to ride and lives to live. ❤️
Original BC was 2011. Dx MBC in feb 2022. No symptoms! Found on a random CT. I’ve been on letrozole/ibrance/zometa since then. Mostly comfortable and Mostly stable. Fatigue and joint pain, but manageable. I’m 54 with 5 kids and lots of life to live! This MBC was a total surprise to us all. I had such a low risk of recurrence — less than .3% chance I was told. But here we are. And this is the path. And I’m determined to walk it well. Lots of trust in Jesus. He walks/runs/rides with me. After him, humor is my next best trick. This “situation” we’ve found ourselves in actually does provide plenty of material. Love this verse from Proverbs. “She is clothed with strength and dignity, and she laughs without fear of the future.” Proverbs 31:25.
I had two FES Pets and they were very helpful in letting know was and was not active. Being Lobular it’s scary. The CT chest abdomen is better for liver and pancreas. I heard those organs do not show as well on FES, but they do show.
so sorry to hear, you have a great positive spirit. If I remember right I think you are Lobular I am too. This is sneaky stuff, but glad they caught it and you can get on a new med to stop the progression. I hope you have a lovely trip and Holiday. I’ve been having flank pain and am concerned.. all scans are clear too. We just move on and live our best life. You have an inspiring attitude! All the best
Beautiful Betty, better be brilliantly beside herself going into this holiday. Forget about what we cannot change for now and shoo away any troubling thoughts until you are facing your oncologist when you come back from NZ! 🙋
Dire news for sure and very much hate to hear. Your positive attituded is infectious. If memory serves right it seems your run on Verzenio was about 9-10 months? Enjoy your Christmas and making more memories with your family and friends in NZ. Thanks so much for sharing and will be praying for you!
yes a good run after not quite a year on Ibrance… we switched prior to true failure as he suspected things would be tough for this pleimorphic lobular. Not good features.
hi, I’ve also got lobular and after a really hard year where nothing seemed to work I started Cap in September. I feel great on it- have managed a few holidays, hand and feet are dry but Aveedo hand cream helps. I get tired towards the end of the 14 days so enjoy the 7 off and most importantly it is working . After three rounds liver tumours shrinking. I was really anxious before it but so far so good:
So sorry to hear this. Is it the lobular that has spread? So it’s outside of your stomach? Good luck with choosing the right treatment and having your daughter home is wonderful!
hi Nocillo- my tummy has felt yuck for months… uncomfortable and bloated. When I couldn’t tolerate my elastic band undies around my waist- I knew something was wrong. I always worried about stomach lining cancer so common in lobular but I always got clear scans… but markers told a different story by shooting up to 400- 500 back and forth up there. I am hoping that cape works and makes me feel better right away. So that I can take it as a signal thst cape is working. Because straight iv chemo is up next.
I believe so… my oncologist went down himself and read the scan telling me what he saw.. liver, outside the intestines snd I think all around. He didn’t sound very grave… considering it sounded like it was very bad news to me. But he seemed hopeful that cape might work. So off we go!
sorry to read you news, but delighted that you have a plan and a great team to work with. Hope you have a Fab trip and enjoy your family time. best wishes Joanna
Apparently Xeloda interacts with folate and folic acid. So reducing the amount of foods that contain that will also reduce hand foot syndrome if you get it. You can talk to a pharmacist about the interaction but it seems as though it’s known but it’s not always shared by the oncologist.
I agree with your oncologist and everyone else who thinks that a holiday in NZ is a good idea. It sounds perfect to me. Have a great time Down Under!
you are very sweet! I took the first 3 pills of cape within 30min of a meal as directed . It was a moment I will always remember. I immediately started flushing and my stomach bloated sharply. My fault-. Probably putting 3 cape on top of a big bowl of homemade vegan chili with seltzer water turns out was not the best idea. I felt like a kids volcano science project until it all calmed down.
I wish you lots of energy for your NZ trip. I am following your journey. I have lobular. First in 2001 which metastasized to bones 2013. I was on Exemestane and Zometa. I tried Ibrance in 2020 and the side effects wiped me out. I am on 3rd round of Kisqali and am tolerating. PET showed cancer in femur. I will be having radiation for it. I will be looking forward to your pics. Happy holidays to you. Kay
I also had a lobular and then a long run before MBC… I wonder if lobular is always a slow burn? I haven’t heard much about Kisqali… is that one you have to have a specific marker to get benefit from?
No markers checked. It is a new drug and survival rate is longer. On the next blood work they are going to check for PI3K mutation to see if I am a candidate for Piqray. My oncologist is in Richmond VA USA. I am wishing you energy to do all the things you want to do.
Kiqali is the third in the CDK4/6 inhibitors: Ibrance (palbociclib), Verzenio (abemaciclib) and Kisqali (ribociclib). Most recent and supposed to be most effective.
I enjoyed the pictures of your vacation in NZ and was quite envious. We watch as many NZ movies on Acorn that we find as the scenery is stunning. An older lady I knew in Scotland lived there for many years but returned to Scotland to die. I think she regretted leaving but was probably able to afford to buy a small cottage that might have been out of reach in Christchurch. Sorry about your news! Your vacation will do you a power of good and give you strength for the next stage. Hugs Chris xxx
yes my September trip to NZ by myself was fantastic seeing friends! And now I have end of January a long planned 7 week vacation with my husband… but health is taking a turn for worse so praying cape will work quick enough to not be fearful to go.
Go wild sister! Travel, laugh, enjoy the trip. New Zealand! 😎 LOtR land! Can't wait to see pictures! (If you take any, sorry😏 for the overenthusiastic behavior).
I love your enthusiasm! I just hope cape hurries and works because I feel UNWELL but it has only been one day since starting cape… but we leave for nz in one month. It’s a race to see if the med works in time.
Praying the Xeloda knocks everything right back down fast, so that you will be able to enjoy hiking and biking in NZ. Lots of people have had good success with Xeloda. Sounds like a wonderful trip.
Hi Beth, sorry to hear you received unexpected news on the eve of surgery. Starting a new drug is like taking a leap of faith into the unknown regarding side effects and response. I’m on Capecitabine and have had very little to no side effects. (I have fatigue but I think that’s from other treatments.). I had a good response initially so hoping you will too and you’ll be able to enjoy your NZ trip. Hand and foot syndrome is common and I use E45 cream twice a day to keep my feet moisturised. Try to avoid tight or uncomfortable footwear (jandals would be perfect). My tummy is sensitive to spicy and acidic foods but after four years of pill popping a pharmacy full of cancer drugs I guess that’s pretty normal. If you take a supply of drugs for loose and hard stools at least you are prepared for those SE. Let’s hope you get good results without any SE so you can enjoy your trip.
I may be making a spur of the moment decision to visit NZ and my family in February depending on test/scan results in January. I’m not sure if I have the energy but it would be good to swap some winter weather for summer sun! And oooh those beautiful beaches… which reminds me, I was told to avoid the sun on these meds (skin toxicity).
yay! Stardust thanks for giving me all the advice and what a hoot if we both go over to bask in the sun.. under a tarp! I didn’t know that about keeping out of sun. My main concern is that my tummy hurts from cancer and bloat. So hoping cape works and takes some of that away.. hoping this pain isn’t just getting a tiny bit worse each day for a month… I leave on jan 21st! Because then I will be really scared to arrive in pain and be away from my comforts of home and safety of my onc and GP who do so much to keep me going. But I do have similar resources but harder to reach… more wait times and not having insurance in nz anymore means I will have to pay cash or wait and use the public system. My main back of my mind concern is if cape doesn’t work and I deteriorate, might I not make it home? I think I would be good with that and spare my family a lot. And my very good friends in nz are so dear to me. Guess it doesn’t really matter to me that much and the advantage to facing the end in nz is that last year when I still lived there, we all voted to allow assets death with dignity. And I that appeals to me. So I guess I’m good. Like you say, starting a new drug is like a leap of faith… this may not work… but then there are some IV chemos to try so I am prob being dramatic to let my mind go to the WHAT IF this fails rapidly scenario… but I think the exercise was helpful for me to process and get to the place where, I can just wait and see and deal with facing whatever happens while I’m in NZ. I’m mostly going to the Auckland area to see friends… Waiheke ect where will you be headed if you come in feb?
I’ve had a string of treatments fail but nearly all worked for the first few months. I hope it’s the same for you. I am on a three week cycle of two weeks on and one week off. I do think you have a lot of living left to do. If cape doesn’t work then there are IV chemo options which, like most, I’m trying to avoid for as long as possible.
I have family scattered throughout NZ but spend most of my time in Nelson or the West Coast. I usually fly into Auckland where I have friends. I just can’t make any plans until I know my results next month.
I still envy the time you have spent on beautiful Waiheke Island! But I’m sure you’ll get to enjoy it again. x
dear Betty Buckets, I so admire your determination and strength. As you feel well enough today, go for it, while being prepared best you can for side effects and if you think you might need to come home, do you have travel insurance.? We all live in multiple levels of life with this disease.
we don’t have travel insurance… could be dolly but it won’t cover preexisting conditions so the expense doesn’t seem justified. We are Nz citizens and so with universal health care are inceh system with GPs. I do have an oncologists too but she is private insurance so would pay cash for her visits. Could be tricky…but I could fly back to USA and my Medicare here.
I am so happy you enjoyed your Christmas😇I hope pray this next treatment will kick cancers a-- , and that the treatment will have no adverse side effects 😄Did your daughter find her beau😇I hope pray she did
Thanks for writing and asking about Molz finding a beau. Yes and csn you believe they want to make a Hallmark movie out of the story of her being up on the billboard! She found a co worker who was in love with her and the billboard gave him the corsage to speak up or forever hold his peace. We all had a lovely Xmas and the next day she flew off to NZ to see old friends since we lived there for 10 years. Thanks for asking!
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