I found out today that I will be starting Enhertu tomorrow. My liver is kind of a mess, it turns out. Odd because I feel absolutely fine.
Doctor said I shouldn't cancel my trip to Hawaii in two weeks. And that I will still be able to ride and possibly compete my horse (the possibly is more about my riding skills than the drugs) and can still work.
He said that after three rounds we will scan and see where things are.
Trying to stay positive. Sending up lots of prayers. One thing I do know is when I was diagnosed 5 years ago, this medication didn't exist (or was still in trials?) and now it has worked miracles for many women. I find that hopeful.
OK, true story, I REALLY don't want to lose my hair. Hopefully I'll be one of the lucky ones on that front.
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Pbsoup
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Here’s hoping for a fabulous trip and a great ride on Enhertu. Loved that drug. Lost no hair and only side effect was mild constipation on infusion day. Good luck!
My liver has been a mess since my MBC diagnosis (first clue was wonky liver numbers). But the cancer is all over, not just in my liver.
I’ve had four infusions (I’m HER2-low) and after the third I was scanned. Excellent results so far! Liver is better, lungs and bones stable (they had been progressing), and very excellent news about my brain mets! Some are gone, areas on the dura have cleared up, swelling is gone, and all other areas are smaller!!
I hope I can stay on Enhertu and that it continues to work for a long time! (Unfortunately, yes, I am essentially bald now. 🤷🏻♀️)
I had about 95% hair loss, enough left that it looks like old lady short hair (:, but wigs are fine. I am HER2-low, started in Oct. with 27.29 at 825, made it down to 96 at end of June. We are starting to see some signals with testing that we may possibly be coming to end of the ride with this one. Most recent 27.29 up to 113, but under the threshhold for "progression"...Recent scan showed increase in activity in a few bone mets, but again, not enough to label "progression"... no NEW mets, and all organs/tissues/lymph clear and clean, only some bone mets to monitor...this has been the easiest med for me of all, (Letrozole/Ibrance, Fulvest, Cape, Enhrtu),,,have always felt great on it!!! That being said, I do 3-day fasting around infusion time, last meal Sat.dinner, no eat Sunday, Monday, infusion Tues, don't eat until Wed. brkfst. I don't have any issues with fasting, and between fasting and mistletoe, all my blood count work is always in the excellent/normal range, never dumped! Hope it will be as kind to you, as well!!
During fasting time: liquids are: water w/a few drops lemon or orange essential oil, or a tsp or so of lemon juice, sometimes a bit of org.apple cider vinegar w/water, herbal or green tea, (could do black tea, per keto folks, but I don't like black tea). Can also do organic vegetable broth.
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Although I had to switch to half dose after a few cycles over a year later this drug is still working for me. I've just switched to every 4 weeks rather than 3 as I was getting so tired.My hair is a bit thinner. The texture is a bit frizzy. I take Biotin to help.
I believe there's another drug after this so I'm not overly concerned if it comes back. Five years ago I thought I would be dead in 6 months now I'm aiming for 'gold'... ten years out from diagnosis
changing treatments is always unsettling but and hope your Hawaii trip and your horse give you great pleasure to offset all that stress and that you keep your hair. I didn’t know that was one of its side effects so am glad I didn’t Chuck my own wig away!
I have been on Enhertu for a little over a year and am mostly stable. I get scans every 3 months and tumor markers every 3 weeks. Initially tumor markers went down quickly and scans showed great improvement. Tumor markers trended upward slightly prior to April scans, April scans showed slight progression but Onc said stay the course. Tumor markers have remained stable (at the slightly increased amount) and July scans showed stability. Therefore, I would not be too quick to jump ship if there is slight progression, especially if Enhertu is tolerable for you. This has been my most difficult drug but I have also been at this for 8.5 years, so not sure how much is age, (62) how much is lots of drugs over the last 8 years or how much is just this drug. I was having a lot of joint pain, fatigue, nausea, trouble breathing and just generally feeling sick. I started working harder at moving more and my doc prescribed Olanzapine at night. It makes me sleep anywhere from 8 to 12 hours and I am doing much better this round. Have not taken any anti nausea meds and have much more energy. No idea why it works as it is actually a drug for mental health issues, primarily bi-polar. I only take 2.5mg and bi-polars are prescribe more like 8mg; but is seems to be really working. Makes me so happy and I hope this new routine will continue to work well. I plan on totally sucking all the life out of this drug I can! My hair is very thin and frizzy, lucky for me, our daughter & husband had moved their wedding up to last summer instead of this summer and I still head a full head of hair for all the pictures. Silver lining as the decision was not cancer related.
Hope you have an excellent time in Hawaii and you and your horse compete most excellently. My new motto is to die with memories, not dreams - seems you are doing just that. Thank you all for being here and posting on this wonderful site.
Hello Pbsoup , Enhertu is indeed seen as an exciting new miracle drug and I hope it works miracles for you! The once-every-3-weeks timing is great for your travels & active lifestyle and I hope your side effects are minimal. Keep an eye out for a dry cough and contact your Dr if that develops (signals pneumonitis, a 12% risk with this drug). Hopefully not an issue for you. Wishing you great results! 🙏🏼💜
Pbsoup I was Enhertu for 10 months. I had to stop due to bone progression. I can’t say I felt great but I felt ok.
The reason I’m writing this is I had terrible hair thinning. I’m now on Afinitor and exemestane. Hair thinning also is a side effect. I always had thick straight hair, which was my best feature. I did some research on shampoos for chemo patients. I found a shampoo called Purador on Amazon. I also bought the conditioner. My hair is now soft and the thickness is unbelievable. To quote my hairdresser, she said “What the hell are you using?” It’s unbelievable. I’ve been using it for about six weeks now and what a difference. No more bald spots!!! I’m in my 11th year of mbc and hoping for more. Mets to my bones only.
Hopefully this helps anyone with their hair thinning problems
Best wishes for a good long ride on this drug. This is very hopeful. Miraculously I’m also on an infusion drug that didn’t exist 5 years ago. It would have been nice to keep my hair, but now ironically I look better in baseball caps than I did with hair. One friend told me she doesn’t notice my hair loss when I wear my baseball caps. However I still dress up, wear my pretty jewelry, makeup and favorite colored lipsticks. I am not giving everything away to cancer.
Enhertu has been keeping my liver and bone mets stable since January.I have had no side effects other than hair loss.It is growing back even having infusions every 3 weeks.All the best to you‼️
I hope it goes well today! That's very promising that your doc says you can still travel and ride your horse ❤️
I just met with my onc last week, and I know next switch she says we will try Elecestrant, and then after that maybe Enhertu (I THINK that's what she said anyway - can't believe I didn't write her comment down! Your concern about losing your hair aligns with her mentioning that). Keep us posted. All the best to you
So great to have *a plan* and also to know you can make your trip and continue to do what you love. Hurray! Best best wishes on Enhertu.
I’m sort of curious about something and maybe the ladies on this thread can respond. How many of you have an onco who sees only breast cancer patients? I’ve consulted with one and am having this gut feeling that I should just switch because they are more on top of all the new developments.
I’ve only seen oncologists that specialize on breast cancer. I think you’re right that they’re more likely to know about new developments & also will have deeper knowledge & patient experience about MBC.
I had the best scan in 3 years after starting Enhertu. Tomorrow I get my 6th infusion. Biggest side effect is diarrhea that I need a prescription drug to control. Good luck to you!
funny story - I read that 50% lose hair so I (tried) to shave my head. My hair hung on doggedly in spots so now my husband says it was a typo in the 50% and it should read "you will lose 50% of your hair". Sometimes you just have to have a sense of humor I suppose. I'm just going to leave it be and see what happens as it is funny looking but still somewhat there.
aww. Thanks. I’m doing amazingly well actually. I’m not having too many side effects and life continues to bumble along. We’ll see how long this continues! ❤️
I’m so happy you are going to Hawaii with the blessing of your onc. I’ve done well on Enhertu for 6 months. I read that 38% lose their hair and I did. Not as bad as I thought. Diahhrea is my biggest problem with Enhertu.
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