It was lovely to see her! She had just had 2 weeks off- with 2 little kids but had all the storms and rains so not a great time I bet! I big hug hello started us off..
I didn’t want to blind side her on her first appt back after vacation so I had texted her the news of my recent spread to liver, around my intestines and in the perineum. And she was very empathetic.. ii had also sent over the notes and scans from boston which she read prior to see us. Rick came too.
The first big difference from my very busy hospital practice in Boston was that we were offered a barista made coffee! Another was that during her exam she she noticed a grain of sand in my eyelash and took the time to remove it! ( swimming in the big waves after the storms means sand is all over you and in your bathing suit)
I admire both of my doctors ( USA and NZ) so much for how knowledgeable they are and how they take time with me and make me feel like they really care. My very caring usa Dr doesn’t like to talk about what ifs… and speculate what might happen or where the spread will go next. He just likes to deal with the here and now. With Karen, she was very helpful for me to know that since my ureters had shown thickening and then led to some ascites (which has resolved for now on Cape) she told me to watch for that ti come back with bloated and that feeling that I can’t empty my bladder … I will need quick attention so as not damage my kidneys- because we don’t want to not be accepted into a study by not meeting the criteria of haivng 2 functioning kidneys.she says that surgeon will fix me up with stents of some sort when the time comes.
Because my hubby writes for medical journals including the Journal of Clinical Oncology, she had printed of and explained why Enhertu was encouraging for me.. and how it delivers the drug into cell. Since it is so new she only has a few on it, but she has spoken to her Australian colleagues and she was encouraged by the real life experiences their pts were having.
she talked ver practically about what to expect with my bowels and how my diet would have to change from the mega green plant based diet to more low residue. Bummer!
the main thing that my usa Dr wanted her to do was to try to assess for xeloda was working if possible. This was hard to do as it has only been one month and in Nz they use CA 15-3 and USA they only look at ca 27-29but nz can’t do that one at their labs. But my neck lymph node was much smaller from when I last saw her… but I thought I found another enlarged one not seen on the last scan-ugh! She thought so too!
we talked about dosing and she encouraged me to stay on 2000 mg /day to keep my QOL and blisters under control. My boston drs wanted me to slowly make my way back up to 3000/ day. I had deep blisters from day one on cape from playing too much pickle ball.. stopped all that and now I only go for 1mile walks.. but I love love to swim so can still do that.
I reported that my pain level was good and without being in the CDK4-6, I had NO fatigue and felt well. Swimming in the ocean made me feel Completely well! We hired a cottage steps from the beach and now with summer and sun back just love to go for several swims per day with our friends.
Anyway- Karen gave me a big hug knowing that I have “a tough row to hoe” ahead but that I have a very good attitude of trying not to let fears of the future wreck the time now that I have with my lovely hubby and old friends here on Waiheke Island.
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Bettybuckets
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What an amazing post. So great to hear from you again! I was wondering how you were faring after the cyclone AND earthquake and still so much flooding in parts. Insane weather.
Anyway, it’s fascinating to read the differences between your NZ doc compared to your Boston doc. I love her focus on your QOL. I’m usually very active like yourself and so relate to the issues that arise by feeling like you can’t do your usual activities. (I’m currently stuck in a boot after getting a foot fracture!) She sounds like an amazing doc really attuned to what is important for you. I am a bit taken aback by learning NZ can’t test the CA 15-3 though.
It’s also REALLY interesting how you feel so great with your daily ocean swims ❤️ I was reviewing my own bloodwork over the last few months and noted with more interest how my neutrophils were at their VERY best , noticeably better, when we had JUST returned from a wonderful week away where I was daily hiking in the hills and also daily ocean swims (my dream life). Is it a co-incidence? It’s not hard to believe it really did boost my immunity!
Hoping for the best for you and your next scans etc when you return to your Boston doc. And LOVE the pic of you with your friend. Happiness written all over you
Haha, it’s the thought that counts That IS so annoying when that happens though! Loving all your pics , and thank you, yes my foot is finally feeling some strength to hold me up again! I’m on my way
Great post. You have a great attitude and you’re enjoying your life! You do have amazing docs and it’s interesting how one looks forward and gives you things to watch for and the other just deals with things as they present, both seem positive. Have you been checked for any mutations? Wondering if that might give you extra lines of treatment in addition to Enhertu or other drugs. Just thinking of filing up your tool box. Just reading your post lifted my spirits! You really demonstrate we need to do those things we love doing. Be safe and enjoy NZ.
so true! Love them both! In my pharma role I knew meant of the oncologists around the country. I picked Karen because she is so bright and has a true empathetic spirit.
Yellow flippers must mean no blisters!! Despite the weather and everything else, you made the right decision to travel to NZ. The joy in this photos says it all. Keep being you.
yes miss stardust you are so right! I love how these silicone flippers week in my feet and have been on long swims along the shore with my hubby and BFFs. I stopped putting cream on my feet ( except for at night) the cream during the day was making my feet slip back and forth snd was worse for the hot red feet. Plus the salt water swims really helps!
What a great report from your visit with your NZ onc-she sounds amazing! The whole trip sounds wonderful and so revitalizing. Loved the photos along the way as well. Have been to AUS but never NZ. Clearly, you are in your happy place!
Glad to hear of her enthusiasm for Enhertu, as my wife just started on it last month. Her fifth protocol in six years (metaversary in three weeks!) First round did not go so well, as she had four weeks of terrible side effects (delayed her second treatment) and they ended up hospitalizing her. Found out she actually had c diff, so hoping it wasn’t really the Enhertu that caused the worst of it! Fingers crossed for her next treatment, now rescheduled for next week.
Have a great rest of your trip and hope to see you bouncing around DFCI when you return! Loved those yellow flippers!
Dave, so nice to hear from you and thanks for noticing my flippers.. DFCI-was one of my first jobs out of college! Dietician… such a good place… I have been to their survivor clinic world class… my Boston onc is actually right next door at Beth Israel.. very old now but wise and so caring… many phone calls even when he is on vacation in Florida. Love him so much. Please let’s stay in touch and love to hear how your wife is faring on Erhertu. So weird to be hoping for C- diff as that would not be fun… but a more hopeful reason for not tolerating the new drug.
You are so right…nasty as it can be, once she got into the hospital, we were actually praying it was C diff, imagine that! She had it once before and this time was even worse, but we were still happy. Life is weird sometimes….
You had mentioned to me a year or two ago about working at Dana Farber, so I thought your US onc was there, too. So many good hospitals in Boston. We are fortunate in that regard.
Hope your daughter is doing well—she’s probably missing you and your hubby a lot while you’re “down under”. You guys are clearly very close. Take care and enjoy the rest of your adventure!
thanks Dave! Let us know how the side effects and efficacy go for your wife! I know you feel like you aren’t doing enough but sounds like you are right there in this with your wife.
keep up the great attitude, and enjoy the beach! We were in Cape Cod last year. What a beautiful part of the country. We were going to go to England in May, but now I’m getting blood clots when I fly so have to cancel the trip. Dr says no more flying. He put me on eliquis. We were going to a wedding of a young man who was two when we moved there in the 90s. I got blood clots after we went to the Grand Canyon.
Thank you for sharing this wonderful post with us. Your positive attitude and determination are so inspiring. I am so happy you were able to meet with your former oncologist and get some new perspectives. I am also glad that swimming has made you feel well. Although I am not a swimmer, I believe it can have therapeutic benefits. I also love that your NZ doc is focused on your QOL. I feel that is so important in our journey, and have always told my doc that having a good quality of life is my main focus. I hope you enjoy the remainder of your trip and come back to the US with a renewed spirit and health. Sending hugs.
thank you so much..I am always worried about others desperate for new info and practical solution to real problems being annoyed I am taking up space.. but glad some are enjoying!
Thank you Bettybuckets for such an inspiring post! There is nothing as wonderful as swimming in the ocean. NZ has so much natural beauty doesn’t it? Your photo is great. You look so fit! Water aerobics here I come. Thank you for taking the time to write this helpful post .
Thank you for sharing your trip with us. You are an inspiration! Your happiness shines from your photos so I’m glad the determination you had to make the trip paid off. Just before I saw your post I was looking up my old gym for their aqua classes as I used to go 3 times a week in California where it was out doors. I did go to LA fitness when we first moved to Olympia but didn’t really care for indoors. Still I need an attitude adjustment and your post has increased my motivation. I’m so happy you’re having a wonderful time and it shows what a special person you are to have 2 Oncologists that care for you and are helping you with your decisions. I do think that the tendency in the US is to continue with a higher dosage than is necessary. Hugs Chris Xx
thanks so much Chris! I love being in the water too… when I go home I will use the indoor pool near my house during march and April while waiting for the lakes to warm up and the big heated pool in our development.
Wonderful pictures😇 Even in the rough waters. I would caption this picture Thriver enjoying life😇. I love the sea water, but I don't like the sand getting in unmentionable places 😇👍
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❤️ I was reviewing my own bloodwork over the last few months and noted with more interest how my neutrophils were at their VERY best , noticeably better, when we had JUST returned from a wonderful week away where I was daily hiking in the hills and also daily ocean swims (my dream life). Is it a co-incidence? It’s not hard to believe it really did boost my immunity! 
Metronomic Dosing of Xeloda (capecitabine) (cape) is working for now
Capecitabine - new treatment
