As I pack for my 7 week trip to New Zealand, I have understandable trepidation that I didn’t have this past September when I went to Auckland NZ for a whole month- all by myself.
But with this trip, I’m still reeling from the recent news of spread all over the abdomen, now dealing with a new therapy- xeloda and the HFS that comes with it. I have lost 10+ lbs with out trying. So it is a different kettle of fish.
Because of my blistering feet, I will prob need a wheel chair to get from plane to baggage. Ugh! I’m still lap swimming- so this is weird to be actually debilitated so much I need a wheel chair but am fit by most peoples standards for a 62 year old. What the actual hell?!
“Ok.. simmer down Betty Davis( my actual name). This is a lot for all of us and not just you”
My main complaint is actually not HFS and not be able to walk much… but rather my dying voice… one vocal cord paralyzed -prob by Tumor pressing on.. so talking hurts now. This is my biggest bummer as talking and keeping up with my friends so important now that exercising on my feet is less.
So I’m inviting you to follow along with me on my 7 week vacation in New Zealand.. I will post pictures of summer if you need a pick me up. Thank you all for being my lifeline to sanity and this is the only way I have if giving back to you.
Take care,
Beth
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Bettybuckets
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Wishing you safe travels and a wonderful journey through those gorgeous NZ landscapes! Thank you for offering to share photos/updates so we can live vicariously through your adventures 😎🌴🌺☀️✈️ 🌎
I hope your Dr gave you a dose adjustment to reduce the HFS during your trip. Waiting for an update on that myself on Monday, as my 2nd round was harder in my feet….
please do share what dose he suggests for your poor feet.. mine wants me to go up… others here have talked about low daily dose and no break and they do well on that.. 3 pills every day. I’m going to read more about that. Then ask questions if my doc.
I'm so happy that you are going on the trip! Airports are huge , use the wheelchair as a way to continue to rest your feet. I know you are a fit and active woman so the foot issues/ med side effect have been sudden and just terrible . I'm hoping you had a dose reduction and your symptoms lessen while you're on your trip . I completely understand your sadness about your vocal cord and voice quality . Your friends love you and can't wait to spend time with you! I look forward to your updates
hi April- yes I went from first week 3000mg… had to take 10 days off… now at 2000 mg and am in the rest period and feet are hardly any better than the first week. Inc wants one more week T the reduced dose but then to push up to 2500. Even cutting out hiking, the walking to the beach and for normal living seems more than these poor feet can do if I have to go up in dose.
I have to travel regularly to access treatment in the U.K. and during the summer of 2021 I had a hip issue, which was radiated, but it was a godsend to have wheelchair assistance. Book in advance and the airline will look after you.
I’m just waiting on PET scan results before I can decide if I can go to NZ. If I need to change on to IV chemo I doubt I’ll get down there again. While I wait I spent last weekend in Scotland near Loch Lomond which reminds me a bit of NZ and today I’m visiting a friend in Amsterdam for the weekend. It’s been 37 years since I last visited there. So I’m making the most of the relative freedom Capecitabine gives me. I’ve found it the easiest treatment so far!
I hope your H&F syndrome settles down soon so you can make the most of your time in NZ. Even though you won’t be a chatty as you would normally be you will still be on holiday enjoying the company of your good friends. Enjoy! And safe travels.
Hi Beth! I hope you are still able to enjoy your trip in spite of the challenges you are now facing. Please keep us updated on your adventures. I’ve been following your posts for a while now, as we are basically on the same road it seems. I started on Ibrance/Letrozole, progressed and moved on to Verzenio/Faslodex. Found lobular all over inside my stomach and colon via endoscopy and colonoscopy in September, tried Piqray and it almost killed me of a severe allergic reaction….and just started Xeloda 7 days ago. My feet are killing me and the nausea is off the charts. I’m doing metronomic dosing 7 days on and 7 days off, thank God tomorrow I start 7 days off! My doctor lowered my dose 3 days in due to the severe nausea from 3000/ day to 2000/ day. I sure would like to know how you are doing, hoping you enjoy your trip! Maybe sometime we can compare notes on our protocols to see if we can help one another with what we go learning from them, information is power!! Godspeed to NZ and enjoy it!!! I wish you the best trip ever!! Take care!
OMG! Such a similar track… I knew that lobular was prob in there for months cuz I could feel some ascites and bloating and felt unwell. But scans kept saying stable. Anyway now on cape almost a month. Lost over 10 lbs but I’m not too noticeably nausea and eating pretty well so that is a concern. I leave tomorrow for the trip and trying now to not walk around the house packing up to much as tomorrow walking a lot in airport will be a lot.
Trying to preserve the feet and not let them blister like the first week. Will get a wheel chair when I can. Stay tuned.
You are amazing Miss Betty! Whatever happens, you should receive a gold trophy for such an Olympian effort! I also look forward to holidaying in NZ through your eyes 🤩
I am sure with your brave heart and strong spirit you will have a wonderful time regardless. Looking forward to your updates and hope the HFS improves- mine is very mild since my dose was reduced by 10%.
I also lost my voice when I was diagnosed with MBC in 2018. It was a tumor pressing not on a vocal cord but on something that affects the vocal cord. I could speak but it was like a squeak and for 2 months I was so down but when I took Ibrance, the tumor shrank so my voice returned. So let’s hope that the Xeloda shrinks the tumor pressing on your vocal cord. Enjoy your holiday in NZ. My mother in law and my sister in law and her family live in Auckland.
Yeah, I am a little over 2.5 years now. Which is why I was stressing over these most recent scans. Issues with getting on the schedule (which made it more than 6 months since the last scans) didn't help my anxiety! But now I can settle down a little bit.
yay! Stable disease… I had scans every 3 months always stable since dx June 2020… but it was the sneekt lobular and now in liver and now they can see it wa there one year ago in that scan! On to xeloda. Luckily I had this trip to be another lovely distraction.
I've been stable for a while now, but you know how we are always looking for that other shoe to drop. I also live with lobular (although mine is mixed), so I always worry that they are missing something. Easy to do with lobular in particular. They've had me on an extended scan cycle now for a year. (Meaning, more like 5-6 months.) Even my labs are only done bi-monthly now, and that is more so (I suppose) due to keeping tabs on levels with Ibrance. Will say that, I can make it up to the 6-month mark now without freaking out... but, like this last time... the extra 1.5 months of wait time allowed my mind to wander and worry.
I am so sorry that it has progressed to your liver. How have you been feeling? And, I am so happy that you are able to take this trip!
Betty you are valiant and by far a role model- May God watch over you and bless you on this journey. 🙏 I hope you have an unforgettable trip and looking forward to seeing NZ through your eyes.
I'm very much looking forward to following you on your trip to NZ. It's a place I'd love to see some day, so post lot of pics! Use whatever help is offered and save yourself for the fun stuff. No one cares if you're in a wheelchair - if they do, they're not worth noticing.
thanks Susan! Def did to much packing and cleaning up and feet even after 5 days break from cape are about to blister. Try to get a wheel chair for the king airport walks for sure!
looking forward to seeing your photos Betty. I know it’s not the best but paper and pen will work at times to alleviate the problems with your vocal cord. I was watching a very happy Haka dance after the resignation of your PM. I guess her popularity is 29%. Hope that wasn’t too political. Take care of yourself and have a great time! Looking forward to your pictures.
I was in Nz for a month and the country wasn’t happy and I get it. Lockdown was hard…and long… but. She kept the county safe until over 90% vaxxed. Then opened up the county to travelers and then Covid spread but only 2500 died of Covid over 3 years. Remarkable really.
I look forward to sharing adventures with you of New Zealand! I hope that the severity your symptoms lessen as your body adjusts and meds annihilate the cancer.
I hope you have a wonderful trip without too much pain from those side effects. Try to save your voice by not talking in noisy situations... pen and paper or maybe texting? My family in Australia swear by some pawpaw remedy (cream/lotion) for skin ailments, maybe that's something you could try on your feet.
Anyway I wish you all the best and enjoy the sunshine!!
Ursula- that is all great advice. Will watch my voice in these airport halls… and I know that paw paw tube in pharmacy in no and will get some… I’m not in and out of stores but rather get my wonderful hubby to get. I absolutely couldn’t do this trip with out him!
good attitude and support from my husband. So grateful. I am always sad when ladies tell about having no support. They are the brave ones facing that scenario.
Aww Betty, You are such a trouper! I'm glad you are going on your holiday despite having such dispiriting symptoms. Do allow yourself to complain here and to your friends.
Please allow your friends to do as much as they can for you (as it helps them handle their own grief in seeing you suffer). Remember too that good listeners are always popular, so be kind to your vocal cords. I hope your oncologist has a plan for them upon your return.
When I travel, I frequently see healthy-looking people in wheel chairs. Please be kind to those feet which have served you so well for 60+ years. Perhaps, one of your photos shared with us could be you smiling from the relative comfort of a wheelchair. I think I would not be the only one on this site glad to see that you were looking after yourself.
I, too, will look forward to all the photos that you share. Enjoy your NZ sunshine and summer weather!
Dear Beth: I hope you have a wonderful trip to New Zealand and would love to see your pictures along the way. It is trip I have always wanted to take. I'm so sorry for the pain you are experiencing and the gradual loss of your voice. That must be so difficult to handle as I can tell from your posts that you are a very social lady. I will pray that you can enjoy seeing your friends and do at least some of the activities you love while you are there. You are a strong, determined woman and I wish you the best!
You go girl! I think it is wonderful that you are going to NZ (one of my favorite trips ever) for a month and I’m so looking forward to seeing the pictures of what I know will be a fabulous trip.
I hope you have a wonderful trip with your family and friends. Hopefully the modifications you need to make to accommodate your side effects make it more tolerable.
You can’t do all the things you had planned on, but by the sounds of your strength and will to make the trip, I think the benefits will outweigh the struggles.
I’m sorry to hear you’re struggling but I hope the New Zealand trip is awesome. My wife and I always wanted to go but recovering from the flight from the southeast US would probably consume 1/2 the trip for us.
Hi HF, what a nice hubby to think about a trip for wife. Just get your self to Houston or Dallas and then direct to Auckland. We are getting on nyc direct but it is 18 hr flight!
Have a wonderful and safe journey. You are courageous! I will try to follow you around New Zealand. I was in New Zealand in 1974 for 6 months. Saw a lot of the North Island and some of the South island. I always wanted to go back for a visit but for now I will just be happy to follow you around. Hugs Marlene
Marlene, I bet nz was fab in 74! I first backpacked all over in 1984 as a young person. Then moved over with hubby and 2&4 year old later. Back and forth… so nz and usa both home. But with MBC I want to settle my hubby back in USA with his family… but still need my time in NZ to soothe my soul.
Yes, Betty NZ in 1974 was so amazing. We spent a lot of time in Mount Eden, Auckland. My boyfriend and I bought a van and travelled around. He was born in NZ so he knew all the wonderful places to visit. Those years it was a gentle country with rolling hills and beautiful beaches. We had Hot Water Beach all to ourselves. We went to an outdoor concerts in Auckland and on one occasion we were entertained by Joan Baez. She arrived in a helicopter. We just sat on a grassy hill to watch her sing. And on another occasion - in the same park - we also got to see Rod Stewart perform. He was just a bean pole of a kid with wild hair. I had no idea of how really famous they would become. There were at the most two hundred people at those concerts.
We even had the awesome pleasure of spending a few days with my boyfriends school chum - a Maori fellow and his family. It was wonderful they danced and sang and cooked for us.
I always wanted to go back to NZ but never got the chance. Even with many changes I am sure New Zealand is still beautiful and very special. You are so lucky to have the opportunity to visit that amazing country. Have a wonderful time. Hugs Marlene
hi Marlene, I love how famous singers come here to sing cuz they want to see nz and sing to small crowds. In the 90s we saw Meatloaf and more recently Neil Diamond sang to us in concert! I am most excited, thst our old friends will take us with them to see Elton John in concert on Saturday!
Hi Betty I had a similar throat issue that caused a vocal cord to collapse . It was awful I spent a year without being able to be heard . I was finally sent go an ears nose & throat specialist . They injected collagens into the collapsed / paralyzed cord and my voice was sounding better within a couple hours . Good luck
Luann- that makes me hopeful! But I have 7weeks of trying to catch up with precious friends which hurts! Bummer. But when I return I hope to get it fixed.
my cancer has spread to my liver and Xeloda is not working but I told my oncologist that I would deal with it when I get back Fromm a week in Cancun. travel is important and I plan to get on that plane even if they have to carry me on. please enjoy your trip
Betty I would absolutely love to see your photos and wish you a wonderful trip. Hoping the side effects lessen and you are able to enjoy yourself. As others have said, get the wheelchair if it helps - and save your energy (and your feet) for the fun stuff!
Thanks so much I wish you could come also! The sky is so blue…. Just arrived and whisked to my friends house. I wish all of us with MBC could travel with all this assistance. Then ew all could make this choices a reality.
hi Beth. wishing you a wonderful vacation/visit/adventure in Nz with your hubby, sisters, and friends. summer sunshine is the best medicine😊. and of course time spent with those you love❤️. very happy for you!
I put up with the paralyzed left vocal cord for 2 years and could not talk without it hurting and the voice was horrible. However, by inserting a plastic filler into the left vocal cord my voice was restored and it is a permanent fix. Surgery done by an otolaryngologist. Also much easier to walk and not get worn out as air was always leaking out with that paralyzed vocal cord.
I tried to get the filler with the ENT doc but they tried 3 times but my strong gag reflux means they will put me to sleep to do it. I am si interested to hear where did I you get it done. Do you talk different?
I was put to sleep. I do not believe it can be done otherwise. My voice is pretty much back to normal but perhaps slightly more hoarse. It is an incredible improvement and I am so glad I had it done..
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Diclofenac for neuropathy/HFS caused by Xeloda 
Hi everyone, I'm new here
interesting Xeloda trial
A pity party fixed by our shared forum. Thank you!
