Last week I flew to New Zealand firm snowy Boston and into summer! if you would like to see more of my trip, look in the comments below.
To recap a month ago a scan revealed spread to liver and intestines firm my bones. So I was switched from Verzenio to xeloda at Xmas… my feet blistered and the cape dose was dropped to 2000 mg/ day but took a while to clear up.
On jan 21, we flew from Boston to NYC… and got a direct flight for 18 hrs straight to Auckland. It was bearable because we each had a sky couch which is like poor man’s first class and you lie flat on 3 seats made up into a bed. It was fine.
Thanks all for the encouragement to have wheel chair assist which I really needed not to blister my feet. I am so thankful to the lovely people who transported me (with my hubby pushing our luggage) what seemed like miles through JFK… even into a shuttle from domestic to international terminal and then up to the gate.
My hubby expressed so much concern as we travelled half way around the world since I couldn’t even get myself to the plane… I assured him that we could still enjoy catching up with old friends and would enjoy seeing gorgeous nz countryside etc… he was expressing concern for my sudden debilitation. Understandable- quite frankly-so was I. Glad that things rapidly improved when I rallied after arriving.
It may be the cape starting to work.. my neck lymph node has shrunk dramatically and belly bloat discomfort has also improved. Feet improved enough to go on short walks and I am loving swimming as it is non weigh bearing and great on the feet.
Our best friends from RI are traveling with us some of the time. And my sister will join later for one of our weeks.
Please check out more pics in the comments below. Leave a comment or hello. I will be happy to post an update each week. Next week I will go to see my lovely NZ oncologist and will post her opinions on my care.
Beth
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Bettybuckets
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First stopped at a close friend who lent us a car for 7weeks. Then hopped in the ferry to Waiheke Island… I am American but have lived in nz for over 10 years.. we sold our house on this beautiful island and moved back to USA to settle my hubby back in USA with his family and friends before I move on from this world. One last nice thing for the man who has been my rock.
What a change in the weather!! I’ve been watching the Australian Open and the players all look withered after an hour of play! So glad you made it over to New Zealand and that you’re feeling much better!! Love and prayers from Seattle!! 💗💗🙏🏻🙏🏻
thanks Linda I’m going to do my best to enjoy this long hoped for trip. You never know if you can go with health issue that can just pop up or condition changes so just glad to be here.
so funny! I saw Judy at the grocery store and she told me that she was going on a New Zealand trip. Such a small world. I hope you all are having a wonderful time!! 🙂 Carla
A few years ago in this beach aptly named enclosure bay, a pod of orcas swam right in here chasing some rays.. my dusghter says it is the best place to see sea horses swimming with masks.
I think better because I am not cramping them all day long snd just out walking swimming etc. When I creamed them, and then walked they slipped back and forth creating by hot spots. So my cure, was hurting me.
I know waiheke island so well since we went through the long lockdown and no cars were on the roads… since we only allowed to drive from your house to get groceries.
So we expired the island with our electric bikes. This pic was a few km out on a dirt road. One of my favorite spots on the island.
I’m cozy despite the monsoon rains. Some Ferries to Auckland cancelled… was meant to go off island to the Elton John outdoor concert tomorrow. It was cancelled tonight when it looked like people had to wade through a foot of water on trh stadium floor.
I was treading water while waiting for PET scan results so took myself off to both Scotland and Amsterdam to visit friends. I got the results on Tuesday which unfortunately showed significant progression. So I’m am off Capecitabine (which was such an easy treatment for me) and waiting to start IV Paclitaxel. I’m am heartbroken not to be able to travel to New Zealand. Instead today I am flying back to Budapest to spend time with my husband before being tied to weekly hospital appointments for the foreseeable. Not the news I wanted but what I was expecting.
weekly? My onc always prepares me for what might be up next snd he said this may be the last by mouth drug but that there are other IVs that you come in once every 3 weeks and some that are only once a month. So that we can kept going. Budapest sounds so exotic!
My oncologist prepares me for the next treatment as well. My understanding is that paclitaxel works better given once a week for three weeks and then one week off. My onc hasn’t suggested the once a month regime. I may post the question here to get others experience. It is such a game changer for me as I’ve been bouncing between living in Europe and returning to the U.K. for treatment for the past two and a half years. That will end with this new treatment.
Budapest is a beautiful city but I still envy you holed up in Waiheke Island, even with the rain falling!
let’s hope that you can get sorted out and can try to come back to nz for just one of your IV treatments. You could nip over for 6 weeks after one and before the third cycle.
Yes, my feet started to go hideous on capecitabine. After a couple of doses through a peripheral IV, I got a port. I've hadabout 21 doses of paclitaxel now and having some nail bed problems and a teeny bit of peripheral neuropathy but on the whole, pretty good. Enjoy beautiful Waiheke.
Stardust1965 - Didn't the doc offer any other meds BEFORE IV chemo? The reason I am asking is because I too, had significant progression on cap. 8 months and the tm's kept increasing to now, just over 600. Nearly 200 points in only a month. Off of cap and now on vinorelbine. Still chemo but in pill form too. I am now on 120mg, on day 1 and day 8. On the 2nd cycle now so we will see if the markers have come down on my appt on the 7th of Feb.
I told my doc that I did not want to continue with vin if it would not help and markers keep rising. Just a thought, as for me, IV chemo will then be next and this would be my 2nd time on iv chemo. Blessings
I’ve been zipping through treatments since Ibrance stopped working a year or so ago - Exemestane and Everolimous, Fulvestrant and now Capecitabine. I did ask about Vinorelbine but given the rapid rise in tumour markers and the significant progression the onc thinks “Paclitaxel has superior activity in this situation”. He was keen for me to travel to NZ but given what we saw on the PET scan it wasn’t an option.
So you have to travel to get the iv chemo? I am a bit confused, or are you going to have a different medication? I can completely understand where you are at right now. Are you es/pr + Her2 neg or low? I am low never knew that and I find it odd that some of us get different meds. I was never offered Exemestane or Everolimous. I am concerned with not having a med to block my estrogen and that that is what is causing the progression. Just taking vin.
Sorry, I should have been clearer in my post. I am originally from NZ with my family there but my husband is from the U.K. but current working in Budapest. His career had taken us around the world for the the best part of three decades. So our lives are complicated. I can only access treatment in the U.K. so have travelled backwards and forwards from Budapest for the past couple of years.
I had hoped to get down to NZ to see my family in Feb/March but that looks unlikely now given the change of treatment. I have ++- secondaries but in summer was diagnosed with a new primary breast cancer that is triple negative. Had mastectomy and three weeks radiotherapy and then went back on Capecitabine to “watch and wait” over December. Didn't work, significant bone only progression. Starting IV chemo is a game changer as I’ll need to be U.K. based.
In the U.K. when Letrozole and Ibrance (and any cancer treatment) stops working you move on to another approved treatment and you can not go back to previous treatments as the cancer has outwitted the drugs and they don’t work any more. I am just hoping Paclitaxel will work with few side effects. I’ve searched on this site and there is some good advice about it and it seems many women tolerate it well. I’m hoping I’m one.
I didn’t mean to hijack Betty’s post with those beautiful photos of “home” - of which I’ve had many!
I was curious to learn more about your story so I appreciate you sharing the details here. I had been wondering if you had had any recent biopsy so that answers that! Ugh, sorry to hear you got a new type to contend with. Isn't there a very newly allowed drug for Triple- cancer? I seem to recall reading somewhere recently so perhaps try googling for that possibility? (If I recall it was an oral drug but I could be wrong). I've got E+ and recently it popped up through my liver vs only my bones. Ugh! I was lucky to have just got back from a trip home to my beautiful home country Australia when I got the latest diagnosis. So I get it, so frustrating and upsetting for you to not be able to travel home to NZ now
Ok, thank you for your response. I have heard on here and from my doc in Spain that sometimes we can go back and try the past drugs again. I too had been on a wait and see in Dec and it was hard to wait. Then the tm's rose almost 200pts in only a month. Now I am taking Vinorelbine and it is causing havoc on my intestines like cramps and I do not have an appetite. However, the pain seems to be less after the day1 and day8, just waiting now for the 7th of feb to get blood test and see if the tm's have gone down. Thank you for your reply.
well Miss Betty you certainly looked very refreshed after such a long journey to NZ! Don’t forget to take time to rest in between your holiday itinerary! 🌸
I am so with you in spirit as you travel around beautiful, bountiful New Zealand. I was there in 1974 from October to April - the last few weeks we were in Australia. I just have the most wonderful memories. when we arrived the lemon trees were in bloom. What a wonderful aroma. Have fun. Marlene
NZ is on my bucket list . Your pictures are wonderful. I am so happy you were able to make it happen. I have a trip to Peru in April that has been rescheduled at least 3 times due to Covid. Now with the Civil unrest and my new chemo, it may be canceled again. A trip to NZ may be better on my body.
May you enjoy every day of your trip.
Hugs,
Sharon
Oh, and keep the pictures coming.
PS: Due my cancer and chemo making me weak 😭 I had to cancel my Peru trip. My friends who I was to go with said I would not have survived .
Glad to see you looking so well and enjoying NZ. If really is true that when we’re happy and fulfilled, our strength improves. Love all the pictures so I hope you’ll keep posting. Don’t overdo it but have a wonderful time. You have your soul mate with you this time so it will be a very special trip. Hugs Chrisxx
I’m in awe of you Betty buckets - you raise the bar high by being so determined. It’s fabulous to hear about your your travels - not without its challenges I’m sure but you enjoy every minute. A sky couch is news to me - good to know.
You and your story are so beautiful I just want to cry, so happy for you, getting to see all the people and places you love; who knows, God may just heal you through it all as, no matter what, I believe in my innermost being that nobody leaves this earth until the Father says it's time, doctors don't know, we don't know (thank You Jesus), it's all up to Him and guess what? He still does MIRACLES and I am praying you get one! <3 xo God bless you with a health miracle (sounds like it's already begun) and heal us all in Jesus name, amen! Hope is ETERNAL and SO ARE WE! <3 PS My hubby is from England, and I worry about him being here all alone if I die first, but then he doesn't want to go back! So thankful, as much as I loved visiting England I do NOT want to live there, but I WOULD do it for him if he so chose to.
Glad to hear the xeloda is working for you. You are so inspirational! You are going and living your best life enjoying family and friends. Your smile says it all.
I hope so! It feels a bit like the Robin Williams movie where he plays a doctor wearing a red nose and all his patients come back from their Alzheimer’s and are so happy to connect with their families…but then they all start to slip away again…. Cape seems to have given me a reprieve but have heard it often doesn’t last long. Just glad I am in my fav place, with my honey and all my friends.
Robin Williams is so good! That one with the Dr helping patients come back to life was Patch Adams… like us, later the drug fails and then they retreat into themselves. He wore a red nose.
I’m on it over a year and counting. You may be in it a good long while. If you lose your fingerprints like I did we can rob a bank together to pay for the travel!🤣🤣❤️
So good to see you looking so happy in these beautiful pictures. Keep sending....they are an absolute pleasure to see and to read your comments about. Enjoy your vacation!! ❤️
It is so very good to see you, and your lovely smile! Thanks so much for the photo in the wheelchair. You look very slim, but healthy too. I hope you are feeling better, and enjoying the sunshine, ocean, and friends.
You and your husband make a handsome couple. I'm sure you have missed friends in NZ, but it also is good for you both to be near family support in the US. If David and I ever get to that part of the world, I will make sure we visit Waiheke Island. It looks gorgeous! Swimming has to be the best exercise, and I am sure ocean water is good for all our bodies ....
Thanks so much Cindy!im even enjoying just going into the grocery every day as they have the best cheese and yogurt etc! Also carrrits taste just plucked from the ground- love that!
Thank you so much for the update and wonderful pictures (keep sending please). You, your hubby and friends all look fabulous and filled with grace and happiness. I am so happy for you, Mary.
I'm so glad that you have been able to go on this trip! The photos are a joy to see! I was very moved by what you said about your husband, and how well you are caring for one another. Having a great partner sure makes life with cancer alot easier and secure! I'm hoping I can get (physically) strong enough to travel again! I miss exploring places I've not been before. We took an Alaska cruise when I was a few years into mbc--the great thing about that was always having a bed to crawl into if I needed it, which I never had to do but it gave me a sense of security to know it was there. And being on Glacier Bay was amazing. No signs of human liife other than the ship we were on! Sounds of nature all around us.
what a wonderful thing to do while living with cancer. I hope you took lots of pics and csn take them out to look and remember what that was like travelling around all that beauty and having the luxury not to drag suitcases… I’m spending most of my time right here on waiheke island for the same reason. My friends have gone to the beautiful South Island to hike and do a cycle trip. I am content to stay on my island and explore fav haunts see friends and relax.
I am so happy you made it back to NZ and that the mets seem to be responding positively to the new meds. If you don’t mind sharing, who is your onc in NZ? I may be needing an onc there myself one of these days and I truly value your opinion and experiences. I hope your time there is filled with joy and peace, my friend.
Happy to help as I know most of the oncologist all over firm my years as oncology sales… I see Dr Karen Aimes at Harbour Onc on Auckland’s north shore. What area will you maybe going? . I think your daughter is in Nelson? If so Richard Issac is great..
Thank you! My daughter is in Cambridge, which is where we will be when we visit. We are contemplating a more permanent move but that gets complicated quickly because of my stage 4 dx. I assumed the best care would be in Auckland and am prepared for that regular trip, but know there are great docs everywhere. My daughter being in Cambridge proves that! LOL. Although I have been stable for two years, one never knows what the future will bring, as you know all too well, so I am exploring possibilities. I think they are building a new medical/oncology infusion center on the outskirts of Cambridge. When you are back in the states, would you be willing to have another conversation about medical care in NZ? Plus I’d love to just catch up with you again on all things NZ and daughters. Enjoy your trip and soak up the fabulous NZ air!
my fav sweet and knowledgeable onc in hamilton is Alvin Tan… just a good soul… young father… you will be in good hands if you go see him. If you pull the trigger, then I can reach out to him to introduce you to him. Next door to the big public hospital is Thr private Bramear Hospital for southern cross insurance. Pretty building. They have a nice older onc lady whom I just forgot her name from North Carolina who is very kind and a bit alternative in that they offer a lot of complementary services. I think your best bet is to go public vs private for cancer in nz. There is no wait times for cancer ( vs for knee replacement) for that you might want to go private.
I love this post! I've always enjoyed reading your posts and comments and now to see your pics from your beautiful NZ home-away-from-home brings a smile to my face. I'm so glad you made the trip over there and get to reconnect with your old friends and enjoy that wonderful place, swim in the ocean and all that! I can relate. I made it home to Australia last September, my first time since the pandemic started. But then I returned to the US to get the news of a batch of liver mets having appeared, vs only bone mets. I don't know how things are going to go for me either now so I feel blessed that I got to get a chance to get over there while I could! I hope your wonderful surroundings, friends and time with hubby, and the Cape work well for you. You look radiant with joy 😊
I am so happy you had your trip and hope you took lots of pics to pull out now and enjoy.
I am the same as you… bone only for 2 years then one month ago found the liver and all over abdomen spread. Quickly switched to cape at Xmas and now feel much better already. What are you on now? How are you feeling one year out?
I'm so glad you are feeling better since you started the Cape - that's a really great sign! This one of my happy places back in Australia.
I actually had 2 tiny liver mets with my bone mets when I got the official mets diagnosis in 2018. I was on iBrance, Faslodex and Xgeva for nearly 3 years, which was great. Liver mets were nullified quickly (phew!) but eventually bone mets progressed. Then I was on Lynparza (BRCA drug) for about a year, until these liver mets appeared all over my liver.
It's a long story - but I was going to join a trial (at Upenn) of a new drug but then Phase 2 ended up being deferred too long, and in the process of waiting to see what the timeline was going to be I found another trial they had so I decided to go on it, at least for the interim. Perhaps a huge mistake? We will see because it's actually a combo of drugs I've been on before and ended up failing, so I do worry a bit if it will work at all but they were so easy for me to tolerate, that's why I decided to risk it.
Started the first month with Lynparza again but with Faslodex added (not a usual combo), and now we've added iBrance on top of those. The theory, I believe, being to block different pathways simultaneously (that have not been tried together before). 6 weeks in my markers did still rise somewhat, but all my bloodwork remains very good, the main risk being too low of neutrophils to continue safely. If my markers continue to rise quite a bit after one more month I may decide to quit it.
Aside from the original trial I was looking at, Afinitor was what my usual oncologist had had planned for me. I'll see how I'm feeling as time goes on. It's like playing Russian roulette, isn't it?!
Enjoy those swims! The clean, salt ocean water lifts the spirit so much!
gorgeous beach! And your story is so interesting… and I think you are LUCKY… tolerating it well and a good theory of blocking all… that would be one expensive therapy if it works and gets approved.. but oncologist have believed for years that combo therapy would be best but the trick is making sure it is tolerable. Seems like you are walking that fine line. I know it is my liver but don’t know the specifics. Think it is peppered with it.. so nothing to ablate. I left soon after hearing the news and haven’t seen the onc since starting on Cape. They kindly sent all the reports and notes over for my nz oncologist visit which will be on Nov7th when I leave the island.for Auckland. She is very kind and will be like getting a 2nd opinion which I value.
Oh boy! I didn't even contemplate the potential cost if it gets approval! Being a trial that's not on me, fortunately. But that's is interesting to hear you say many oncologist's have been thinking along those lines for a while. And you're right, I do consider myself in the lucky camp in regards to both longevity and tolerability. I lost so many friends along the way to breast cancer (when most of us met pre-MBC, and that was all before my own MBC diagnosis. Drug options are so much better now since those days!).
I'm like you, got a peppered liver too. It's great you have someone in NZ you trust to give a 2nd opinion. I hope the visit with her is fruitful 🤞
Same here, very healthy eater and low on alcohol! She didn't really make a comment, but she was more serious than usual about getting me onto a new drug promptly. She likes to focus on the positive, and knows well my desire for good quality of life (especially because I teach fitness!), so she makes every effort to keep me going on drugs likely to have the least side effects and interference with my life, which I greatly appreciate. She even reached out to me recently to check in with my progress on the trial (different hospital), so I know I have her back for support, which is very reassuring! The trial docs said the spots were too small, and it was deemed not worth the risk of doing a biopsy to check for a change in the cancer's makeup, when I had enquired about that. How successful is that liver ablation anyway? I've only met one who had it done, and it didn't help her survive sadly.
I think we are similar…I try to remain fit too. .I booked this trip originally to do the Alps to Ocean 6 day bike tour with my BFFs and sister. I cancelled when my feet made me feel it would be difficult not to ride but to push my bike around dangerous parts. Hard if your feet are all blistered. Still just happy to be hanging out…Day 6 in the rain.
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