Anyone starting brand drug, Enhertu?
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@stirfry - Thank you! My mets spread to my left lung and adrenal gland. I think I had bone micromets too as my Alk Phos kept increasing every month until I started treatment.
@norah2024 - My relapse was detected in Feb. 2025 through my yearly tumor marker tests but I felt that something was wrong in oct 2024 and jan 2025 when I had month long bouts of productive coughing. Enhertu is a gamechanger so don't be afraid to start it. I was absolutely terrified at the start of treatment but it will decrease your tumor markers and shrink your tumors. As much as I hate the side effects, I haven't missed an infusion appt. and to me, it's more tolerable than Taxol.
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@chocomousse
Thank you for your response
The fever now is gone but the Gough is still there, tomorrow I have appointments with my doctor to see what is nex.?
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@stirfry My hair is still growing back, too. I had read (during my very scientific forays into Dr. Googling) that hair only grows back when you stop treatment. I still wear a head cover in public, like you, but we can represent! Hair loss is not permenant on Enhertu. I have been doing a big step down on my post-meds. No adverse effects. I'll be off them altogether after the next cycle. Dare I stop the pre-infusion steroids and anti-nauseals? I'm going with yes.
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Had my 6th Enhertu infusion today. My new port worked perfectly. So far, no nausea.
It also worked yesterday for my blood draw. My MO approved treatment for today. She said she will keep an eye on it. Thinks I might be anemic. My WBC, RBC, Hemoglobin and Absolute Neutrophils are all low and have been decreasing almost every time they have been drawn while on Enhertu. I am most concerned about my Hemoglobin (9.8, range is 12-15) and Absolute Neutrophils (1.0, range is 1.1-8.0) and hope I won't have to stop treatment in 3 weeks.
The Enhertu is definitely workingโฆ.
My makers are going down! One (CA 15-3) has even been in normal range last 2 blood tests.
My first PET/CT Scan done the beginning of October was very encouraging. Although it indicated there is a new 1 cm lesion in my right iliac, my MO does not think it is a met. A number of previous mets are no long there and those that did light up are stable. ๐
Now that I have had 6 infusions, hope to see some hair start to grow back. In the meantime, hats and wigs.
If anyone has any suggestions of what I might be able to eat or any vitamins they have been told to help raise low CBC results, please let me know. Crossing my fingers ๐ค ๐ค that they are better in 3 weeks.
To all those who have been on Enhertu for a number of years, I can't tell you how encouraging that is to me.
Hope everyone here is doing okay and don't have too many side effects.
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My update at C7/D15: I've had two bouts of ascites in the past two weeks so my MO scheduled all scans a month early thinking things were spreading within my liver. CT scans showed my liver mets are still decreasing and I have a few new, small rib mets. Still mixed results but we both agree that we need to take care of the liver first and I have been getting the Xgeva monthly. My ascites fluid does not contain any cancer cells.
We have been watching a nodule on my lung since my mastectomy in 2021. It has been stable all this time but now decides to grow a little bigger. They refer to it as an "indolent second primary". I'm not sure what makes them think it's a primary (never decreased with treatments?) but they feel that further workup would not change the management due to it's slow nature. I should play the lottery.
Last infusion, I did not take the evening doses of steroids. I hesitate to stop the morning ones as it gives me a little energy and I have been having a few instances of nausea three or four times a week but easily taken care of with zofram.
This past week-plus, I have been so very fatigued. I am always in bed and feel pretty weak. The MO wants to schedule an EKG. I thought that was an odd response, but OK. Blood work is also scheduled for the end of the week.
As a result of the ascites and the fatigue, I went back on medical leave from work.
My hair is still growing back too, and is about 2 cm long!! Woo-hoo!
Congrats to all the ladies with great scans recently and to everyone else who is having success on Enhertu.
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@dulcea. So sorry to hear you had to take medical leave. My liver mets are merely stable after two CTS while on Enhertu and yours are decreasing. I don't have the fatigue or nausea, but I have the cataracts. I cannot wait to get my surgery as my eyesight blows. Looks like my left eye will get done in December. Not soon enough! Best wishes for nice EKG results.
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how are you managing the side effects of enhertu. my prior chemo treatment never hit me as hard as my first enhertu infusion. the doctor has me on this as a preventative so unlimited cycles. i live alone and support myself (thank God i work from home and my company is understanding/supportive). but this has been hard. the complete lack of energy seems to be the hardest for me. Any tips or tricks out there i should implement for my second cycle?
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@mimijc - We're sorry you have to join this group, but welcome! You'll be in good company here.
Youโre definitely not alone, and many members have shared tips that make life a little easier with Enhertu cycles.
We hope what you find here helps! Looking forward to hearing more from you soon.
The Mods
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stable is better than not stable! Good luck with the cataract surgery. It really must be affecting your eye sight.
you didn't say if you were being pre- and post- treated with steroids. I take them only in the morning and they give me a little energy to get through the day. That being said, I am currently dealing with some pretty bad fatigue to the point where I went on medical leave. Otherwise, I have not really had fatigue as a side effect. Is it possible to decrease your dose? Tell your MO and see what they have to say.
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What type of cancer did you previously have? Where did your mets spread to? What chemo were you on? Since you're being given Enhertu as a preventative, maybe they can start you out on a lower dose instead of the high starting dose?
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@chocomousse itโs been breast cancer all along. Diagnosed at stage 4 triple positive with lung, lymph and bone Mets. Very aggressive (ki-67 score of 85). 6 cycles of chemotherapy and I went into remission. This September we did a routine brain MRI and found 4 tumors. Treated those via gamma knife and started Enhertu. Trying to find a way to minimize the side effects. I live alone and support myself, the fatigue has been especially debilitating
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@mimijc - apologies for asking what type of cancer as I meant, what type of breast cancer. I've heard that Enhertu can really be a game changer for brain mets. The AstraZeneca (makers of Enhertu) recommended dose reductions actually help people stay on Enhertu longer as the side effects at the full dose can be pretty brutal. The efficacy outcomes were similar too so this may be something you could discuss with your doctor.
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I had my cataract evaluation appointment today. I will have have surgery for both eyes (about a week apart) and four follow-up appointments (seems excessive, but what do I know.) I'll be done by mid-December. The doctor said the rapid growth of my cataracts was most likely due to the Enhertu, not age (I'm 66). My prognosis is excellent, though. I'd recommend that if you are diagnosed with operable cataracts, get them fixed asap. I lost the ability to drive safely in less than two months.
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@onlywhenitrains - I had mine done in early Jan 2023, also 1 week apart. For the 2 eyes there were 4 follow ups - 1 for each eye the days after the surgery and then a 2nd visit for each eye after all the drops were completed.
Ask the facility where you are having them done if they have a chart they can give you to keep track of the drops you have to use. There is a declining schedule whereby drops drop off the schedule and/or decrease in the number of times you have to use them each week. My outpatient clinic did not give me one and I did not think to ask for one. I did create a chart on excel. Let me know in Message if you need the schedule. I would be glad to share it with you.
Good luck!
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@going2beatthis Thank you. They told me they were going to put some kind of medicine in my eyes so that I would not need to take drops afterwards. I appreciate the offer of your spreadsheet.
For everyone. I finished my 12th infusion and I did not take Dex afterwards (with doctor approval). No ill effects. I asked the infusion nurse about stopping the pre-infusion steroid dose. She was dubious. I will ask my oncologist when I see her before my next infusion. Stopping Dex won't have any effect on my eye situation, but less stuff foreign stuff in my bloodstream? I'm for it.
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For the record here, I had a PET CT this week showing progression on all liver lesions. Bone scan stable though. It has been about 10 months since I started Enhertu. I guess that's about average for this treatment before progressing but I'm pretty discouraged it didn't go longer. Not sure what's next, will find out in a couple weeks.
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@mkestrel I asked my oncologist if there were options for me when Enhertu fails. She said there were several, but declined to specify. It was a matter of "if this, then that." I would be interested to learn what your doctor recommends. I am so sorry you had liver progression and wish you all the best on your next steps.
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@mkestrel - Sorry to hear that you had progression to your liver lesions. Sending you lots of ๐๐๐ that your MO finds something for you to take and doesn't have too many side effects. Keeping you in my thoughts!
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Have been on Enhertu since the end of June. Although my makers went up after my 1st infusion, they started going down after my 2nd infusion and continued doing so until the beginning of Nov at which time they went back up.to the point they were the end of August. Today I had my blood work for my infusion tomorrow and all 3 makers went up again close to the readings from early August. Three MRIs of my spine done this month showed no new lesions in my spine and no progession in those areas.
At my visit with the PA today she said that if my markers continue to go up, they might have me do my PET (scheduled for Dec 30) sooner. Am wondering if I might have progression in other areas of my body although I have no pain or symptoms.
Has anyone on this thread experienced a similar pattern with their makers? And if so, did they eventually start trending down?
Thank you.
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@going2beatthis My testing situation is different from yours, so I can't answer your question about marker patterns on Enhertu. I'm not sure pain or lack thereof from mets is indicative of progression based on my experience. I have never had pain from mets, even in my early days when my bone mets were "innumerable." I do get ctDNA blood tests every three months, but this test is still in an experimental phase. Otherwise, I get CTs of abdomen and chest every three months along with nuclear bone scans. I hope your PET scan shows no new growth in spite of the markers. I moved from Chicago to Louisville and my Louisville oncologist prescribed the same testing as my Chicago oncologist. That makes me think that what I am getting is standard for my diagnosis.
In other news, I am completely off Dexamathazone. No pre-infusion, no post-infusion pills. General energy still good and my sluggish digestion is gone. Never had nausea and didn't have it after stopping the antinauseals. I had a gut feeling I didn't need this and I'm glad I asked about stopping.
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