Anyone starting brand drug, Enhertu?
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Hello Ladies,
Today is much like it has been except that I stayed up until midnight last night (purposely) and then slept till about 6:30 this morning.
Weninwi, they go through my vein. I had a port with my first go around with cancer in 2016. I had it removed after about 3 years of being cancer free and not using it.
The nurse said getting infused every 3 weeks my veins should be fine. Of course we will monitor that.
Hi Rhonda, I will look those up on youtube! Thanks for the recommendation. Feel free to offer up anything helpful or even the things that aren't helpful…..lol. They are helpful as well! 😅
My 3year old granddaughter is coming to spend the night tonight 😊and all day tomorrow. I am tentatively excited, LOL!
Be well,
Shannon
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Weninwe - I still have a port. My recurrence came within 6 months of my first surgery. I like the port, it's so easy. And since it was never removed, it’s convenient.
Shannon- enjoy your granddaughter's visit! What fun you will have. Grateful for all the small joys in our lives. Let me know if you like the exercise videos. Kelly’s lymphatic seated stretches (20 minutes) is wonderful. I switch around between Meg (aim fitness) which are gentle and Lauren (Senior shape) when I want to push myself a bit. Both were recommended to me by Maple Tree Cancer Alliance. I was lucky to be part of a program my breast surgeon does research with at Northwell cancer center , they look at the impact exercise has to benefit treatments, so they funded a personal trainer for my first 6 months . I got hooked! It’s a great way to start the day, along with mindfulness meditation. At least for me.
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Updating my story.. I only received 2 doses of ENHERTU (2nd was lower due to side effects - I also got extra fluids with that one). Lung mets were a possibility as seen on chest CT however turned out to be pneumonitis, probably caused by Taxol=paclitaxel. So things were changed again last month, this time to Xeloda/capecitabine tablets.
With my asymptomatic interstitial pulmonary disease assessed as stage 2, I can’t resume this which is highly disappointing. I had hoped to get a nice long run. Remember that it was such a big deal when announced at ASCO in 2022, the doctor presenting such a special HER2 low treatment received a standing ovation.
Because lymphedema restricted vein access to just one arm, I was happy to have another port placed last summer. When diagnosed initially, I had one for chemotherapy and it was great.
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Illimae & Others,
Do you experience dehydration after an effusion? Have you ever needed and gotten extra IV fluids after an effusion - even a few days later? Do you make a point to drink lots of water/fluids daily? I recently read 32-96oz/day is recommended. Do you use an electrolyte replacement product at home especially in the days after an effusion? If yes, which one (there are so many)? Anyone try the product Enterade for GI side effects d/t chemo?
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Weninwi, I stay well hydrated and have a big 64oz water bottle that I use daily. I’ve read of some getting IV fluids but I never needed to and have only used Propel electrolyte drink mix on the rare occasions that I’ve been hungover.
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weninwi - I was told to stay hydrated and I use a water bottle too. I never thought of doing the electrolyte replacements post Enhertu. That's probably not a bad idea. I use the Liquid IV packets.
So far so good on infusion one. I have been really exhausted but since I've been struggling with my breathing I expect some of the fatigue is from that. I just have very little endurance for being up and around right now. I'm trying not to get to anxious about it and give it time. I just want it to work but it hasn't even been two weeks since my infusion and I'm trying to be patient. This past summer it took a couple of Taxol treatments before my lungs improved.
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I start first infusion this coming Tues 2/27. My oncologist was agreeable to me starting at either 100% or 80% and after talking with several different people including my husband I decided to start at 80%. My reasoning was in part was based on my age (75) and a statement in the Enhertu prescribing information sheet: "Geriatric Use:….there was a higher incidence of Grade 3-4 adverse reactions observed in patients age 65 and older (60%) as compared to younger patients (48%)". After sleeping on my decision, I now think this was the wrong decision, as I will now never know if I would have tolerated 100%. And no health professional is willing to say what the efficacy rate of 100% is compared to 80%. Lacking confidence in making these kind of decisions causes me so much internal turmoil and sadness. Is this self-pity?
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Weninwi - If you tolerate the 80% would your oncologist allow you to then bump up to the 100%? I always second guess my decisions when options are left up to me.
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emac,
My oncologist said she would not increase dose if I started on 80%. I'm going to call tomorrow to say I've changed my mind and want to start at 100%. Not sure what the reaction will be. My infusion is scheduled for Tues. The mental stress caused by my indecision has been high. I appreciate you sharing your tendency to second guess when given options.
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It's a big decision to make, @weninwi. So sorry that it's been causing you so much distress. I think most would find themselves second guessing what decision to make. Side effects are no small consideration. It's hard to find that balance between quality of life and doing the most we can to maintain stability for as long as possible.
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Although ENHERTU is no longer in my game plan, it’s such a unique option for many, I may continue to pop in here to find out how everyone is doing. For instance, I’m praying for Weninwi as she gets her first infusion this morning and may be more than a little anxious.
Some of my relaxation methods are deep breathing, listening to music, going outdoors in our yard to see what’s growing, and genealogy work for folks in a local ethnic heritage club. The latter hobby is actually a distraction because, once I make a breakthrough, things can get exciting.
However, it’s nice to have non-expensive, low effort activities as an option . (On line shopping does not count!)
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Oh I think on line shopping counts lol… lol. Love your relaxation methods. Agreed, deep relaxation meditations for me are wonderful, especially visualizations with light and deep breathing , following and counting the exhales from 1 - 10, and then repeating 5 X is my go to. It gets me through the MRI's and PET scans as well. The visualizations make me happy and open my heart with gratitude.
Also I love going outside for long walks, watching birds, and cooking too. I find it deeply relaxing reading new recipes too and finding colors in my vegies to combine in new ways.
I'm on week 2 of infusion 2, and I feel great this week. Last week was "off" felt slightly unwell days 4-6 but now right as rain. And I was able to go into the office yesterday for the first time in a year. I work from home usually, meetings and teaching on Zoom. But yesterday, I took the subway and attended a full day in person retreat, felt so normal and liked that it was possible.
Good luck Weninwi! Hope today goes well.
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I had my first Enhertu infusion yesterday. Arrived early at the hospital and met some relatives who were leaving. We hadn't seen them in a while and since we all had the time we went to lunch in the cafeteria. Enjoyed the visit and it helped relieve some of my stress and provided a bright spot in the day. For me this was a sign from the Lord that He is walking with me.
I was given the option of starting at 100% or 80%. For two weeks I flipped back and forth in my mind. This emotional turmoil was hard on me and on my husband and family who provide support. I finally chose 80% on Friday then changed my mind on Monday - yikes. My oncologist's nurse called me to say the oncologist declined my change - said she wanted to stick with the original plan as she had already submitted the orders, but she would consider going up in dose depending on how I tolerate the 80%. I was relieved a decision was made.
The infusion went well. The young nurses did a good job and the oncology pharmacist stopped by to meet and answer any questions. I started at 80% dose based on my weight (253.44 mg) delivered over 90 minutes which is standard infusion time for the first dose. For premed I was given 10mg Decadron and 16 mg Zofran, both were oral and both for nausea. Sent home with 4 mg tablets of Decadron and 8 mg tablets of Zofran. So far today no significant side effects. I was able to sleep and have added Colace stool softener (3 a day) as Zofran is constipating; also drinking lots of fluids. Now out for a walk - it's cold today, but sunny.
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Weninwi - I'm so glad it went well for you! I have my second infusion tomorrow.
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I had infusion #3 this week, feeling good, a little off but that is natural for the first week. Tumor seems to be shrinking , go for another MRI in 2 weeks to see how much smaller it is, as I will have a second surgery/mastechtomy in 2 months if possible. All is good , port still working fine for infusions and I’m exercising, good diet, meditating and developing new projects at work. Hope is good! Happy Saturday to all.
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rlschaller - I'm so glad Enhertu is working well for you and yay for shrinking tumors! I am a week behind you. I will get my third infusion on 3/22. I have found it to be very tolerable. I feel a little tired and off the first few days afterwards also. Brain MRI on 4/2 so I am crossing my fingers to see positive results.
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Hello, all. Is peripheral neuropathy a side effect of Enhertu? I'm stopping Taxol and wondering if I should continue to ice hands and feet on this new treatment.
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Hi Jodyj, I specifically asked my oncologist, and she said no. It’s not a side effect of Enhertu. Good luck with the new treatment.
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@rlschaller, that's wonderful to hear. Thanks! And thank you for your good wishes. I don't start for a couple of weeks.
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Hello, have not started enhertu yet but that is the plan after I finish 25 radiation treatments. Given the choice of enhertu vs trodelvy (if anyone has had both feel free to weigh in with your preference!). Obviously want the most quality of life and the longest PFS. I have multiple mets to liver, bone, and lymph nodes. Thanks for your thoughts!
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hi kelq, I was given the choice as well and chose Enhertu. I compared the Enhertu cycle which is every three weeks which I liked vs trodelvy which had a day 1, day 8, and then a day 21 cycle. My oncologist also said it was the friendlier chemo, with milder side effects and only 40% lost their hair. That sold me. (And to prevent hair loss I drink freshly made carrot juice and apple juice daily and no thinning!) lol ….
For me quality of life has been good with Enhertu, I’ve had three infusions so far. It’s a personal decision of course, that’s been my experience.Rhonda
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Hi gals, had my 4th infusion today. Went well but a long day. MRI showed the mass reduced 2 cm, was 10x4x6 now x4, not a big result but shrinkage is awesome after only 9 weeks. Happy to share. At 4 months check with a pet scan which will determine treatment plan, have an echo week of Apr 22 echo and week of May 1 pet scan. The cancer eruptions on the skin of the breast have lessened from the start, but same as 3 weeks ago and these need to go away before surgery can happen. Still too early to tell when mastechtomy will occur, still hoping for June.
Enhertu continues to be a good treatment for me, having results and the side effects are very mild. Hope everyone is doing well.
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@rlschaller, that is so great to hear. I'm happy for you! I'll be starting my Enhertu treatment next week. Hoping for good results and manageable side effects. Am encouraged by your post!
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@jodyj I’m glad. Good luck with starting treatment. And I love your Thich Naht Hahn quote. I’ve read most of his books, No mud no lotus was one of my favorites, as is Being Peace. Wishing you many smiling breaths.
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@rlschaller, Good to hear that you're a Thich Nhat Hanh fan. Wishing you many smiling breaths as well!
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Hi all, hope everyone is doing well today. Smiling as you can, breathing in and out. I'm in cycle 5 of Enhertu, and have my PET scan next week to check in with if it has spread or is holding steady. The mass seems to be lessening some, but I have secondary spread on the skin of the breast itself that my MO feels is the same and not budging, and the surgeon thinks it has worsened. So the PET scan will tell us if there has been a progression. If so, then they'll move me off enhertu and on to trodelvy. So I'll keep you posted. But feeling good, trying not to anticipate…lol. I've increased my meditations to 3 x a day for an hour, which has been super helpful. Am grateful for the contemplative practices I use. Does anyone else meditate or use contemplative practices? Would love to hear from you if so. Stay well all.
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We're glad to hear that meditating has been an effective way for you to manage how you're feeling around this ambiguity, @rlschaller. What type of meditation do you do? Do you use guided meditation?
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Yes, I use guided meditations during this higherstress time, it’s perfect for relaxing, letting go into stillness, for a calm mind. Ian Gawler who wrote You can Conquer Cancer (highly recommend his book) has a free app I love called Allevi8. It has many guided meditations from deep relaxation to mindfulness, to healing journey visualizations on the app, which I find super helpful.
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Oh, amazing. Thanks so much for sharing that! I'm sure the others will appreciate that, @rlschaller. 🙂
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woo hoo PET scan showed no progressions and no new lesions, lessening of the tumor mass and best of all one of the two spots on my neck are gone. A partial result is a good result, vey happy I’m Staying on Enhertu as I tolerate it so well. Skin nodules haven’t lessened but I (and the surgeon) have to be patient, logic and MO says they should eventually. Happy Friday everyone.
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