sadly my markers have been rising and I have been having belly pain plus my neck node doubled in size since before my 2 months in New Zealand… weirdly but typical for lobular my CT scan showed practically disease… such that then I had to get a PET scan to confirm that… that seems also not to show anything… BUT it shows I have small amount of ascites which I can feel.. so I am resigned it is time to switch. My oncologist reminded me that the scans don’t pick up microscopic disease and of course can’t visualize lobular cancer very well as it often grows similar to sheets of plastic wrap in the abdomens of women with LBC. Bummer!
After 20 years together he knows that I want to keep moving and be as unfettered as I can be. So my line up of drugs may look very different from some of your choices. I’m going to go with Doxil with is a liposomal version of an older drug to help it’s toleration… I am going to be very very sad to start back on IVs mostly because of my memories from years ago haunting me..but I am grateful that this will just be once per month and then I can get on with life. I am going to make a special outing out of the day and be grateful for each friend that joins me… my hubby will want to go once but he needs to work. My onc in Boston explains he wants to get going quickly as it often takes more than a few cycles to figure out if this is going to work… often these drugs have 30% response rates… so we all can’t be responders… that will be the scary part as I imagine my belly pain and ascites(fluid stuck in belly) will be making me uncomfortable and anxious until finally I may get a response and feel better.. and with scans that don’t show much, it seems unlikely they will be reassuring. So it will be just watching my biomarkers and going by my clinical symptoms… meaning how do I feel on the new drug. I really would have liked to cruise thru summer on xeloda as I loved having no nausea or fatigue! But this is where the trust built on 20,years comes into play… for some of you reading this and wondering but what about this new drug or other new thing… they will all be offered over time… but my understanding is that they all come with small but pretty severe side effects so I am willing to accept that risk later in my line up of drugs.
Meanwhile an update on me as some of my friends here have asked and been communicating for awhile.. after the writers strike, Hallmark got in touch and we signed a deal with them to allow making a movie 🍿 out of Billboare Adventure in TimeSquare! Exciting! My daughter Molly loves her man which she had just bought a house with just outside the lovely small city of Porsmouth NH and is helping to raise his identical twin 7years old. They call me Bethie and I read to them… I’m loving it as it’s the closest thing I might get to grandkids!
I will next reach out to all the wise women on Doxil to share their secrets and have appreciated alll you kind and encouraging words when I have shared some of my travels.. always worrying who wants to read about my life when you are all bravely getting thru your day. But I wanted to share insights into how some people’s choices get made an a quick update of my quirky life.
I am wishing you much joy gals!
Beth
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Bettybuckets
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just wanted to encourage you to read to the end of my story- where I get a movie deal and even more unbelievably get to grandparent identical twins! I feel so fortunate. It’s unbelievable but true!
I am sorry for the changes and dealing with ascites and belly pain. This is such a a lovely picture of you and the twins! I have fraternal twin grandniece and grand nephew, they are a year and a half old. And are handfuls. Antonio and Isabella. Bettybuckets, what is the movie about? I think that is awesome 😎!! FYI, my husband (who's passed) and I used to live in Auckland for a short while. In Fremont Bay just across from the grammar school. Loved living there. I have some lovely friends that we keep in touch on a regular basis. It's my bucket list to get to see them again.
Hello monkey girl62- Freeman Bay? That is so cool! I’m sure you know Ponsonby which has become so lovely with good shopping etc they they kiddingly call Pond Snobby! Hope you will get to go back to Auckland. They have direct flights now from NYC which is long but so much easier. How lovely to have baby twins with those gorgeous names.
Hey I do want to go stay with my friends, they are in Whitianga. I live in Seattle now moved here last September from South Carolina. I think flights from Seattle maybe a little shorter. Lol 😂
Thanks for the update. Hope this new drug will make you feel better sooner rather than later. You are such a strong and encouraging woman ❤️. Enjoy your time with the identical twins. We have identical twin grandsons who are now 14 and it is just the last couple of years that I can confidently tell them apart lol. Theresa
I haven't been on this site as much as before, although I do still get email alerts every day. Of course, I had to chime in when I saw you posted this. Thinking of you!!! xo
Nope. Not only still "here".... on this site and life in general... but I do still chime in here and there. Of course, when it is someone like YOU... when we do have this history (especially with private chats through this forum!), I pay extra close attention to when friends like you post!
I am sorry that you need to shift gears on treatment (and, you may recall too, I have mixed ductal/lobular... so I do take note on the lobular stuff, i.e., differences in how it presents as well!). For as much as a treatment change is coming for you, it DOES sound like you are doing pretty well in the scheme of things, and that makes me SO happy to read! I myself am doing really well. Hit NEAD (scans a month ago), and a liquid biopsy back in December couldn't detect ANYTHING at all. Not just mutations; it couldn't detect anything.
I wasn't going to post about this today, especially since MoreFor4, Inc. isn't ready to help cancer patients yet... but I started a national nonprofit organization a year ago. (So, my silence on this forum site is only due to a shift in focus, really. Like, how and where I spend my time!) Here is the website, for anyone who wants to become a free member and learn more about what we are doing! morefor4.org/
In fact, when I first founded the organization... I thought that it all hinged on whether I won a "grant," which was really an essay contest. Something someone wrote HERE told me that M44 needed to exist regardless. This video is long (a little over an hour), but it explains everything from how/why we got started to the 7 programs slotted over coming years! As I said, we don't yet have the money to help cancer patients directly... but I am preparing for a big sponsorship push. HOPEFULLY, our first patient support program will become available within the next 6 months. youtu.be/Qgx9dMFktDI?si=pay...
I can't WAIT to see what happens with your MOVIE!!!! YAY!!!!
Wow! So happy you are NEAD! And look what you have done with you energy… I’m looking forward to watching the video in a quiet moment… but just about to go explore Wash DC while I have energy! I’m here with Molly!
I will do that! I have been a little reluctant to do it before we have resources for folks, but we are set up for member sign-ups where people can get updates as they come!
If I had a car... I'd try to catch up with you! I am about 40 minutes from DC! Enjoy your visit!
As for the video, it is set up as chapters... so, folks can watch in snippets. I know that a video of 1 hour 9 minutes is a lot for most people! Yet, watching the video as a whole helps people see how it is all tied together! The videos are also on our website, with individual snippets under the program pages, etc.
So far, just me! I have two Board members, but... everything you are seeing on the website (and the website creation and video development, etc.), I did myself. But the website needed to be up before I could try to get folks involved and be able to explain all this (which IS complex, yes) in easily digestible terms. I mean, the website itself is just temporary. I've been talking with firms about our needs, and the final website (or long-term one, at least) will run us around 500k to a million bucks. Nothing small about M44!
I only made the videos and website publicly accessible on March 31st. And our IRS 501(c)(3) letter is on its way to us. (Applied for tax-exempt status on March 5th.)
I often don't realize how much has been accomplished until I come across things like... old notes I found in my briefcase from less than a year ago when I didn't even have names for our programs yet! As for shoestring, yup. Have spent less than $1000, and that was for filing fees, etc. This is an example of simply outworking the resource shortage issue! Learned this from a lifetime of it, both personally and professionally! Let's just say, I am pretty proud of what M44 has become... and what it will be!!
We all dread the iv chemo and issues with side effects when we need to change treatments. It is however needed to keep us going. Hopefully the once a month treatment will be able to do double duty. That is to take care of the progression and give you the freedom to do your thing! Blessings
so true… I am worried about the symptoms getting worse while I wait to start the chemo and then wait a few cycles for it to start really working… so am worried about that panic feeling when you feel pain bloating or ther things that keep us up at night and cause us to constantly evaluate is this working… will have to blow thru this treatment to try something else to more quickly get a response. Hoping for the best.
I love the way you really live in the moment and find things to enjoy. Please continue to keep us in the loop. Hoping the side effects are minor and that you continue to enjoy all the marvelous things in your life. Those lucky twins!
Good to hear from you though sorry to hear about the progression as you’ve had such a good run with Xeloda. My wife did the liposomal version of Doxil and tolerated it well for a few months, but unfortunately it was not particularly effective for her so we had to move on to some of the newer meds. It was treatment #4 of 9 treatment regimens on her ongoing journey. In our experience, even though it utilized the infamous “red devil”, the dosage utilized for MBC patients, together with the liposomal aspect, made it much more tolerable. Hope all goes well for you!
Wow, a Hallmark movie in the making!?! That’s so cool, and what a great story line! I’m thinking Barbara Niven for your part and Lacey Chabert for Molly, but maybe those are too cliche. So many good choices!
The twins are adorable! We love being new grandparents and clearly you are enjoying them and vice versa. Love the Portsmouth area and it’s not far from us—was even closer to our last home before we retired and moved. More reasons to be spending time in your old stomping grounds back in Boston!
Wishing you all the best with the new treatments and all the other exciting developments! We’ll be looking forward to the Hallmark premiere! 😀
Hi Beth, dang - so sorry to hear of a treatment change for you, but clearly you have a great oncologist who is an understanding and skilled team member along with you on this journey. Waiting is one of the hardest things to do. I hope you start feeling better sooner than most. Sounds like you have lots to keep you busy, which I find so inspirational! We are in NZ right now with the grandkids, so your comments about your new 7yo twin grandkids warms my heart. “Sweetie” is a perfect name for our littlest generation ❤️. And a movie! Can’t wait to see it!
Please let me live vicariously thru you and tell me where you are and what you’re enjoying currently! I spent most of my time on Waiheke island but also flew to Wellington to explore, went to the Bay of islands had a snorkel and cycled the twin coast where I had a fall and skinned knees hands and shoulder, oh and we visited friends in Taupo and Waihi. Oh and we went the the Pink concert in Auckland with my friends from High School..And spent a lot of time on Auckland north shore. I’m missing flat whites and all the stone fruit I ate all summer. What are you enjoying being there?
You are much more active in NZ than we are! Since we’re here to mainly see the 3 small grandkids (and have no friends to take trips with) we stick close to home in Cambridge, doing school drop-offs and pickups, along with Saturday markets, soccer games, and baking blueberry muffins. I walk a lot here, which is incredible good for me. We have a world-class aqua center with a therapy pool that I also am thrilled to use for my new hip recovery. It is so incredibly beautiful in this country. I’d love to move here but even if the govt would let me in (which they probably won’t with this diagnosis) the lack of drugs for advanced cancer has me appreciating the access we have in the US. So for now, while I am able, I’ll take my trips here as often as I can and enjoy what time I have with these littles. I would love to see the South Island one of these days. We took a train to Wellington when we were here over the summer and had a grand time. We stayed next door to an historic cemetery, by accident, which was fascinating for me as I have studied cemeteries in my folklore research. Add that to the knitted animals on the dock lights! Beautiful city.
Oh I recognize that is near Te Papa national museum… we stayed right across the street from… we swam just down the street Wellington Harbor! It was glorious!
Lucky you with a daughter in Cambridge… when I lived in Nz I rowed on a breast cancer dragon boat team that competed in the very fine national rowing facility built nearby. Such exciting times! We won a bronze and silver competing in the world national championships against 8 other countries! I loved going to Cambridge! Gorgeous town! Used to go to hamilton a lot to see the oncologist for my job working for Pfizer Oncology. I had the whole country as my territory. You are right they have no more money to approve the newer drugs after approval for )Herceptin and now Ibrance… but they have very fine oncologists.
Love dragon boats ever since I lived on the river in Portland OR and was able to watch them every day from my condo. So great you were able to actually participate in a competition! What great fun that must have been. You are proof there are silver linings and good things that can come from our troubles as long as we look for them. I know you have a trusted oncologist in NZ. I will look for one of my own if I am ever able to spend more than a couple of months at a time here. Hamilton is easy access for us in Cambridge. In fact, I have joined a clay community there and am able to practice my sculpting a couple of times a week. Such a wonderful group of folks.
I was sad to read your post and know that you’re in pain. I hope the new meds will work for you. I thought about you two days ago and there was two images that had popped into my head. One was you using a wheelchair on I think it was a trip to NZ or maybe when you visited your son and dil. The other was when your dil cooked a special meal for you. Both images made me think of the joy you had when you travelled. I had been listening to a song called Caledonia which made me homesick for Scotland and I was thinking that your journey was much longer than mine might be. Common sense has prevailed as I’m having a problem with Asthma and NTM/Mac at the minute and would hate to be somewhere where someone could hear me coughing and hocking up. My son just arrived in New Jersey to re- train from a Blackhawk pilot to a commercial pilot and we need to be here as a support for my 2 grandkids 16 and 14 He officially retired after 20 years and his courses will go on until the middle of November. Hopefully the hiring will have increased by then. I just added Ian’s (14 yr old) final violin concert to my calendar and we will get him there with the obligatory cookies. A lovely picture of the twins, they look like happy wee girls and you’ll make a great Nana or whatever they name you. 7 is a lovely age and they’ll keep you on your toes. Good luck with your new treatment and wonderful news about the Hallmark movie. Hugs Chris
Chris how lovely to hear from you and remind me of those lovely memories! And how nice that you can be there for your son when he needs you in NJ… in fact my son and DIL were recently in Scotland! Having a grand time hiking out in the hinterland… when I happened to phone them they had just sustained 2 flat tires at once! I said “Ian( 34) hoe did you manage that?” He thinks it must have been 2 giant pot holes hidden in a big puddle!
Don’t we have loads in common with our Ian’s 20 years apart! Mine also plays the violin… only not very well… like only his mother could love… which I mean it sounds rather like he is torturing cat. But I am very proud that he keeps trying!
It is great to hear from you Beth. Even if Xeloda stopped working, there will always be other treatments. Just carry on and enjoy life to the fullest, as you already are. I am also in MA and go to Dana Farber.
Sending prayers for successful treatment. I just received DX of stomach cancer after 23 yrs. I will see my oncologist June 4 to find out treatment plan. Following all your posts. Looking forward to the Hallmark movie. Have they given you an idea how long it takes to produce? Kay
Hi Kay thanks for asking… we just spoke with the director and the writer and it should happen fairly quickly…they said and I am hoping it will be out for Mother’s Day 2025!
That is a wonderful photo with your daughter and the twins are precious! Enjoy them. I find that little ones really help take your mind away from worry.
I’m sorry that you need to go through adjusting to a new drug. I totally understand how you feel — we just want to forget about all that and live, which I think you’re so good at. I just read the book Radical Remission (recommended by someone here) and I loved it because it reminded me that finding joy, taking charge, and managing fear, among other things, help our immune system fight cancer. It somehow hit a nerve with me even though it’s stuff we already “know” and made me more positive.
I’m sending prayers that Doxil does its thing for you and for a long time! I hope you can still breeze through summer!
I love your posts and your spirit to just go and live your life which is what inspired me a couple times over the last 4 years when I worried about traveling with low ANC when I was on ibrance and to take the trip the experience just do it. I have a poster in my wall that has a kitten looking into water and a tiger is the reflection and it sats MINDSET IS EVERYTHING. Hell yeah! Anyway sending you positive thoughts for this new treatment- it’s stressful as I just went to second line of treatment too with a port (awful) but we are taking care of business and getting it done. Hugs,
I’m so sorry about you having to start a port and everything… this came up suddenly while I am on a trip to DC and I start the Doxil the day after I get home… I only have the one arm due to lymphedema in the other… but I previously had a port and have a cavitation hole where it was so not sure where the heck they would put another port… I don’t think they have thought about it yet. They scheduled this really quickly not because of my health but because a new hospital wide computer system coming which will slow down everying while they learn to use it. So they want to try to get first dose in to me prior.
I'm sorry you are moving on from Xeloda. I'm sending you lots of good energy that the next combo kicks cancer @ss! I love the photos - you look wonderful and your daughter looks so happy ! I can't wait for your movie ! We will have to have a "watch " party when it premieres .
Keep us posted on what's coming next for tx- we are here for you !
I love that idea of a watch party! I am looking forward to summer and then hopefully this new chemo will work so I won’t be scrambling for something that does…. I could like the next year to be cruising on Doxil while I look forward to watching the movie with my family and friends next year. That is the dream!
Dear Beth, I'm sorry you have to move on from the Xeloda and hope that this new medication will work well for you and still allow you to go on your adventures and enjoy life. I love reading about your travels. You have such a positive outlook and have truly been an inspiration to me. I am so happy for your daughter, too, that she has found true love and that a movie will be made about her story. Also, what a joy for you to grandparent these adorable twins. Such a blessing. Stay strong, keep up your faith and positive attitude. Sending you hugs and prayers.
Thank you so very much I am with them in DC and they are a sharp looking couple! Just tagging along on their work trip and cycling and visiting friends while they work at a meeting. Aren’t they cute?
You are welcome! I love DC. My daughter and her husband lived near there for a few years and we went to visit them several times. The Memorials, museums, etc. are just awesome! They are a very cute couple. So happy they found each other. Have a great trip!
Thanks for sharing! Sorry to hear about the infusions but I like your take on them. I too make my every three week infusions an outing. My dad and I always have a breakfast date beforehand which we both look forward to and then he drops me off (no room for visitors at my place sadly). So exciting to hear about the Lifetime movie! Hopefully they give you a little bit of fun money for the rights! Enjoy the grandkids too
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Update: Xeloda vs Taxol
One year on Xeloda update
Cruising with MBC and having Xeloda.
Changing to Xeloda 
Update – surgery tomorrow, then on to Xeloda
