I'm a long timer (20 years on 3/1/24, with bone mets since first diagnosis) and have done extremely well. Lobular bc, E + P + her2neu - at diagnosis. In 2023, it became triple negative and I was on Xeloda for a few months. It stopped working and I've been on Taxol for about 5 or 6 infusions. CA 27-29 dropped from 725 in January to 355 on Tuesday. So I'm really going to be able to celebrate that anniversary next week! I have hand-foot syndrome. Very little feeling in feet and hands. The tips of my fingers are very sensitive and I can't type normally. I'm fortunate to have a husband who's a great care taker....would probably need to be in a nursing home without him! His first wife had the most aggressive form of MS and he learned alot about caretaking from that. So unfair for him to remarry and end up having to do so much for me! Except for memory issues, I'm pretty much the woman he married as far as my emotional and mental self and I do as much as I can physically. But so much I can't do! I have felt well enough to do several loads of laundry this week. The issue is the limited space in the laundry room. Anyway, we're both really pleased with the TM results! Oh, and I pay our bills and put together our tax info (not my idea of fun, but it is something I can do and contribute to our life!)
Doing well on Taxol. TM down by half! - SHARE Metastatic ...
Doing well on Taxol. TM down by half!
So glad you are doing better. Have you been metastatic for 20 years?
Thanks! And yes, metastatic for 20 years! Bone mets only for about 15 or 16 of those years. Then a small met on the outside of right cerebellum (treated with stereotactic rads) and in tissue blocking the left ureter (tube between kidney and bladder, removed surgically and now having stent replaced every 3-4 months). 1 1/2 years ago cancer in abdomen created an intestinal blockage, in hospital for 23 days, had minimally invasive surgical removal of valve between stomach and small intestine, plus part of small intestine. My digestion is really a mess! I lost alot of weight and can't eat a normal amount of food. Feces are sticky. My memory isn't good and I have severe neuropathy in feet and hands. But I can still enjoy family, friends, pets, music, and alot of what I've always enjoyed!
I am so happy that it’s working for you, and your TM is down by half!!! I’m sure your husband appreciates what you do to contribute, and how much you appreciate him.
I hope the hand and foot syndrome improves! Think I’ve heard best results with urea cream.
Thanks for sharing your good news and hope. May you keep getting better !❤️🩹
JM
Thank you! What's your PhD in? Education has been important to my family for generations! I have two masters, in counseling and divinity, so my inner resources are better than most.
I’m not surprised you with the thoughtful wisdom and generous spirit of what you share!
It’s in general experimental with a focus on social and cognitive. Completed clinical first but transferred (long story) and worked mostly with adolescents 13 years.
I got a PhD in experimental cognitive psych, and switched to social psych, which I preferred teaching, then switched from academia to community based research on social issues (sexual assault, human trafficking, domestic violence). Once I got mbc, all I have wanted to do is arts (and being outside, constant). I was never clinical, though. I used to say that I study people, I don't help them, but that is not entirely true, since sometimes research makes a difference.
I did notice that you've been metastatic for 20 years. I know you've had your struggles. Very inspiring for those of us at the beginning of this journey.
Thanks! And that's one of the reasons I post here! I remember how much hope it gave me to meeet a 30 year survivor at the first MBC conference I attended. More and more of us are living over 10 years! The "average" survival figures are brought way down by those with really aggressive cancer, very advanced when diagnosed and those who don't/can't get good treatment. So the rest of us have alot to be hopeful about!
Ditto on those who don't get good treatment. Some horror stories here. It makes a big difference. Red Azalea is adamant about not going to small local hospitals rather than cancer centers, and not being treated by oncologists who don't specialize in bc (sorry for the double negative).
Happy almost anniversary! Hope you have a wonderful time celebrating!
Great news on your tumor markers. I hold my breath every month before reading mine. Whenever I read your posts j think of your hubby as the pied piper. We are indeed lucky to have kind hearted men in our lives. Good for you getting some laundry done. My philosophy is to get at least one thing done a day whether it’s dusting, laundry, cooking or cleaning. We just have to keep moving. Hugs Chris xx.
Dear PJBinMI: Congratulations on still living each day with MBC for 20 years! Thank you for sharing hope & your positive thoughts with us!
🙏❤️🙏
Thanks, and you're welcome! Being here helps, too!
I have been following you for 7 years. I was also diagnosed stage 4 from the beginning with bone Mets and HR positive, HER2 negative. I have been on Ibrance and letrozole since 2017 and achieved NEAD within a few months after diagnosis.
You have been a great source and encouragement for me . Congratulations on 20 years!
Congratulations on your wonderful results so far with Taxol. That's a wonderful drop in your TM. You definitely will be able to celebrate that 20 year milestone of living with MBC next week and that is truly amazing. Even with many advancements in the treatment of this disease you are really still an outlier with your longevity. I'm sure your husband feels blessed that you are mentally and emotionally still the woman he married and anything you can do to contribute he will be grateful. Like you I have an amazing husband with me on this journey that none of us deserve. I think they become caregivers without thought and it helps them to cope as well because otherwise they feel pretty distant from how they can otherwise help.
I hope you continue to do well on this treatment for a long time. Thanks for sharing your story. You are an inspiration to us all. Take care.
Thanks! I come from a family of social workers, teachers, clergy and others in the "helping professions" so giving hope to others just comes naturally to me! Having good husbands/partners sure makes this journey easier. My husband just found out that his sister's sister-in-law has pancreatic cancer. Sure too much cancer out there.............
My friend’s son in law battled pancreatic cancer for 4 or 5 years. He had the whipple surgery and as a young man , early 40’s was previously very fit. I think he found the side effects to be more than he anticipated. He and his wife gave the last couple of years to creating memories for their two children and 2 weeks ago he entered hospice and passed peacefully. Very sad! Chris
That is awesome and so very very encouraging for all on here!! Rejoice and celebrate the great news!
I'm sorry about an additional family member with cancer! There certainly is way too much cancer out there but I absolutely believe there are cures available! So much research and sharing of information is done on this site! Truly a blessing!🌺
Such a remarkable woman! I am on Xeloda for 14 months and I sent this pic of my feet to my oncologist in Boston (I’m visiting NZ) I am very lucky that my HFS is mostly in my feet not hands. My lovely onc took one look at this photo below and he told me I must take at least one extra week off… and send him pics of the feet every few days for him to assess. Lovely caring elderly sharp guy I’ve been lucky to have for 20 years. I say this because I really know how hard but important it is to truly contribute in a marriage when your partner does so much for you. Especially when walking across the room is hard sometimes. You Be proud of yourself for doing the bills taxes and laundry. My husband would do a jig for joy if I could contribute like that. I am sure your husband really appreciates all your efforts. That is real love!
Thanks! And I hope the extra time helps alot! My feet are pink but nothing like what you have. (I love your photo! If I were an artist I'd paint this!)
I am so happy to read that you are doing well on this treatment. You are always an inspiration to me. Your husband sounds like a wonderful man, you are blessed. Hope you can find some relief for your hand/foot syndrome and that your tumor markers continue to drop. Keep up the faith and your positive attitude. Sending you hugs and prayers.
Thank you! My onc has dropped the Taxol dose...would sure like to be able to feel my feet!
what an uplifting Sunday , you have made my day a whole lot brighter 🤗 so happy for you , coming up 20 years , you are an inspiration to all of us ❤️
sorry , PJBinMI. 20 years already
That's why I mention the 20 years! to give hope like I got early on from long timers! I hope you'll be doing that, too!
Aww that’s so lovely honestly it means so much , Thankyou ❤️
Congratulations on 20yrs PJBinMI. I also read your posts and appreciate all that you share. You have given me much hope as I navigate my mother’s MBC. This is really something to celebrate!! Congratulations again! 😊❤️
Thrilled you are doing well. I have hand and arm issues and have to ask my boyfriend for alot of help. Hate being dependent but thank God he's willing to help.
Thank you! Yeah, being dependent isn't fun! Give your boyfriend a big hug for me (if you can give big hugs)
Thank you for your post, it gives me much hope to hear of long survivors like yourself.
I am 4 years since diagnosis, stable on Herceptin, Prejeta and Zometa..
Most days I feel pretty normal and am lucky for that. Taking another trip in 6 weeks - our fourth in last 2 years
Though I try not to let tomorrows worries ruin todays peace , a constant worry is all the "what ifs" and that is what keeps me up at night. I keep this to myself as I do not want to worry those close to me
Can I ask if you are on a bisphosphonate like Zometa? I have been on it since the start and worry about ONJ but Oncologist feels I should remain on it.- and though I trust him, I still worry
Can I also ask, from your post it seems, though you need some help from your husband, you have a good quality of life? Are you able to enjoy day to day, travel, go for walks etc? Thank you again for your post.
So pleased to hear you are doing well on Taxol- I am also on it, and my first 3 month scan was stable, so I hope and pray this continues. You sound like you have some great teamwork going with your husband. You do inspire and give hope to us all here, long may it continue x
This post made my day. You have been an inspiration since I joined this board in 2019. ❤️
It’s so encouraging to hear that you are doing well on new treatment! I love reading your posts and can sense the deep spirituality that flows from them. I find inspiration in reading about your 20 year MBC journey and hope that I can travel as long as you. I’ve been on the MBC journey for 7 1/2 years and lost my husband a year ago. I’m single parenting our 15 year old daughter and don’t have anyone else to help me. Fortunately, I was able to apply for SSDI and don’t work anymore. This helps a lot. Support from groups like this one make a huge difference. May your treatment continue to be effective for a long time!
Congratulations! That is wonderful news about your tumor markers. You have been an inspiration to me, just as you have been to many others. I have been on Ibrance/Letrozole since 2018 and am doing well. May God bless you!
I am also stage 4 at diagnosis with one met to my acetabulum. It will be 7 years for me in April, I have bee been on Ibrance and letrozole. Because my PET scan in September showed no progression except for the tumor and one lymph node, my oncologist and I decided that I would have a bilateral mastectomy, had it done on January 5, she got all the cancer except for a “ microscopic” piece that I will have radiation on.
Thank you for giving me hope💕
Gosh bless you.
Congratulations! Here's hoping you're around for many more 
I was struggling on Xeloda for many months--after a while, the H&F syndrome (stage 3) was bad no matter what I did, but I kept on keepin' on anyway. Until this past week when a PET scan showed that the Xeloda had failed and I had resurgent mets everywhere--bones, lungs, liver and spine. Not sure yet about brain--I have a brain MRI coming up.
And that means Taxol. I was glad to find this thread, since I've been really worried about how I'll react to it. I have several wigs tucked away and am on my way to Amazon to look at caps, but the hairloss isn't my main worry. Continuing H&F, mobility and digestive issues worry me more. I'm 77 and have an accepting hubby and friends who've been reassuring me that they don't like me just for my hair 
So glad to find this thread today. I'm struggling to come to terms with the fact that I'll be on Taxol and want very much to get back into my positive state of mind. Working on that. Thank you for all of your posts...
May I whine here?
Dating 
