I have been posting a lot lately. Thank you everyone for all your help. Some history…..I have lobular MBC. I have Mets in stomach lining, liver, and hip bone. got almost a year and a half from ibrance. After that I was on Exemestane and Everolimus for 2 months and all my liver mets grew. My oncologist at Dana Farber whom I really like said that Enhertu might be my next line of treatment. I am Her 2-low. ( I think that’s what it is called. ). Her reasoning was that the cancer had outsmarted 2 hormone blockers and that it might be time to attack it differently. I’m not even sure about my question. I am scared that I am stopping Hormone therapy so quickly. Seems to be that I have lost the option of a bunch of drugs. Anyway the cancer seems to be growing quickly so I want to get on something quickly. Thanks for reading this. Any ideas or info would be greatly appreciated.
Carla
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Ticket123
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I'm a long timer with metastatic lobular and something I'm wondering is how your liver is functioning. If there isn't an issue with that, you and your onc have more time to think this thru than if you're about to go into liver failure! Dana Farber is one of the best cancer centers in the US. Is your onc one of their BC specialists, who sees only bc patients? Hearing that we have tumor growth is always unnerving, but how your body is feeling is important, too. After nearly 19 years with MBC. my cancer cells went from E + to triple negative. Fewer treatment options, but my first chemo seems to be working. Good luck to you!
I would love to know what a “long timer” with lobular looks like. How long have you been doing this? I am 16 months into MBC. I was dx stage one lobular 11 years ago and then we found it in bones last year. I’m on same first line of hormone treatment, but I know lobular is tricky. So glad to know you’ve been able to address it with all the twists and turns. Thank you.
Hi I am on Everolimus & my liver Enzymes went up as well. However, the Dr reduced the dosage to 7.5 and my liver enzymes are slowly going down. Perhaps this would be an option for you? I pray you find the treatment plan that will work for a long time. Be blessed.
I’am also waiting for a final decision to be made on the next line of treatment .It is looking strongly in the Enhertu direction. The dr have also talked about radiation therapy for pain in the femur area on both legs for Pain Treatment due to deterioration of the bones. I have already had surgery on one side for a broken femur treated with plate, rods and pins . I am currently walking with a cane or walker for stability. Has anyone had any experience with the radiation for metastatic breast cancer pain or Enhertu side effects ?
I try to avoid radiation treatment for pain. I had it in my lumbar and now that is where I have cancer. I use essential oils and cbd/cbg. I have never been on prescribed meds. The oils work immediately too. Just a thought. Blessings
Have you had molecular testing? Do you know what mutations you have? As some others have mentioned, the cancer also can mutate from HR positive to negative. They need to biopsy a part of a tumor to get all that info.
Which onc at Dana Farber are you seeing? Wishing you the best of luck😻😻😻😻
my son in law works for the company that came up with enhurtu. After the study of Enhertu with low HER-2 low, they got a standing ovation because the results were so good. So seems that you’re on a good one. It will be in my future. Many lose their hair😢. It’s always scary to start new meds. I wish you the best Please let us know all the details of your journey!
Hi Ticket123. My diagnosis is HR positive/HER-2 negative MBC with bone mets in my spine. I was on Ibrance for only 3 months, as I was still having slight progression in my T8 vertebrae. My oncologist switched me to Xeloda, which is a chemo pill and I have responded well for six months now. I have had 2 clean PETs showing almost "complete response to treatment". Not sure if this is a treatment option for you, but it might be worth asking.
I have been on enhurtu for two rounds. It is an infusion that you get every three weeks and it builds up in your system. After two rounds I had to take a break my whole body ached. I did not have any intestinal problems, but my neuropathy was getting worse to the point where walking was somewhat of a problem. I am now going to start radiation on my right hip and after that I will probably go back on enhurtu at a lower dose. My break was about six weeks. I wish you luck with enhurtu . I was very excited about taking it because I had heard how effective it was so I will probably try to go back on it if my pet scan shows that it was effective.
Hi Ticket123, I had a very similar experience to yours, lobular in bones, then went to stomach and colon. I am Her2 negative, but ran through Ibrance/Letrozole in 1 1/2 years then went on a sprint through Verzenio/Letrozole, Verzenio/Faslodex, Faslodex/Aromasin, and Piqray/Faslodex. None of them worked so none of the AI treatments were working anymore. I failed Piqray from a monster allergic reaction it did work, but I couldn't take it. I'm on Xeloda now and it's working like magic. My markers were never normal on any other treatment even when they first worked. My markers are three points away from normal for the first time and went down from 586 to 48 in 4 months. I can't say about scans because lobular rarely shows up on scans and mine did not, I had to have an endoscopy and colonoscopy to find the cancer. I have heard good things about Enhertu, you can always also ask your doctor about Xeloda, it's reasonably easy to tolerate for many of us. Good luck on your journey and take care!
From everything l know it sounds like the right thing to do, my questions would be: are there any other options; is faslodex an option? Why do you think this is the best option?Also, have someone with you when you talk to the doc. Sometimes l dont even know how anxious l am and its a good idea to have another pair of listening ears.
I too have a lot of mets, including large liver ones and Enhertu was by far the most effective treatment I've received yet. My blood cancer markers just plummeted! No other treatment ever had an effect even close to it. And I had no noticeable side effects.
Unfortunately, I developed what may be those scary 'ground glass opacities' in my lungs and was taken off it. I was extremely upset and am still trying to come to terms with the loss of peace of mind and hopefulness. I'm just starting Xeloda and leery of the incredible number of nasty side-effects. My pulmonologist is skeptical that the lung problem is actually ground glass opacities though and just started me on prednisone to see if it works to get rid of them. My fingers are crossed so hard that it helps. I want back on Enhertu so much.
We sound like we are going down a similar path, I do not have lobular though so I can’t speak to that part. Ibrance worked for a year and a half and then I was on Piqray for two months, Xeloda for five, and then Enhertu. My experience with Enhertu was to make sure you ask for fluids before your infusions, lots of anti-nausea, and yes, my hair thinned a lot (I finally shaved it short and love it!). Some women do great on it, the rest struggle. I struggled but I think I just never got ahead of the nausea so that was my problem. It kept my Mets stable for the two months I was on it. I am now on Gemcitibine and seem to be doing a lot better (almost zero nausea). Good luck! ❤️
I am on my 3rd round of Enhertu. My only complaint is severe nausea. My palliative doctor gave me every anti nausea medication you can think of. I remember thinking I’m not doing this anymore. My days were spent in my bed or my couch. Then I remembered how they weaned me off of steroids and that’s when my vomiting started. So I asked to go back on the steroids and I’m so much better. I even went to breakfast with my friend. Woo Hoo! It was great to get out of the house and feel normal. My doctor wants to wean me off of them again but I will probably ask if I can stay on the lowest dose.
As far as Enhertu working, I go for my 1st scan this week. We shall see. Praying for good results 🙏🏻🙏🏻
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IV treatment after Ibrance & Faslodex quit working round 1 done ! 
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