Need prayers Faslodex only!

[Clair19]

Hey ladies, just wanted you to know that I just came from the oncologist. Blood work excellent, weight good. However I can’t take Verzenino due to my body rejecting it. So I’ll be on Faslodex only until September. Please pray that I can get markers down and keep on fighting till we can find something I will tolerate. I have not had a scan, but would not really matter as I haven’t really been on anything for longer than 3 weeks. I hope all of you are doing well. I haven’t read my messages yet. I will do that tonight. Thanks again...

[nstonerocks]

Smooth sailing while you figure this out. Glad you feel well and that all your tests look good. Always praying they find us the next great drug. I have scans next week. Ugh. 😑

[Clair19 in reply to nstonerocks]

Oh God bless you. I know how those scans are. It seems it’s the strength we need for not just the drugs to work but how we tolerate them. Than the results of the drugs and do we change or stay miserable 😩. The Verzineo is not for me, I will pray for Faslodex to work and go from there. Thanks...I pray your scan is great 👍.

[Mcap]

Hi, Clair. Glad your feeling better. Hoping the faslodex is all you need. I was told by my oncologist today that I have a rare breast cancer. The cancer from my lung biopsy came back as estrogen positive breast cancer but also positive as a Nuro endocrine cancer. So she had the lab pull my breast biopsy tissues and test them. They came back positive for the same thing. She said that it is rare for a breast cancer to be this type. That's why the ibrance, letrozole wasn't working. I'm getting a bone scan, ct scan, and a hearing test tomorrow. So I can start chemo early next week. Hearing test because of one of the chemos they will be using. She is going to take my case before the tumor board on Friday, to see what they have to say. Been kind of a busy and stressful day. Not what I was expecting.

[diamags in reply to Mcap]

Dear Mcap, I have ER/PR +, HER- with Neuro endocrine features as well. Very rare indeed. I have been on anastrozole, faslodex and xgeva for nearly 5 years (September) with no progression. I'm knocking on wood. Now, understanding that our genetics are completely different, and who knows why I've responded so well, I want you to know that my onc is considered one of the best in the world and he was the one (after speaking with several) who put me on this protocol and it is working. So, I know many get gloomy about the neuroendocrine thing, but it can be okay.

[13plus in reply to diamags]

That's wonderful diamags! So encouraging for others like yours that these drugs can work so well. Where are you located? Is it allowed to share doctor names on here?

[diamags in reply to 13plus]

I get my medical care in Chicago. If you'd like to email me, please do so at [e-mail]. I will share docs name and hospital. I don't know if we're allowed on here.

[blms in reply to diamags]

Dr Hayes by any chance???

[diamags in reply to blms]

Dr. Gradishar.

[Clair19 in reply to Mcap]

I’m sorry I know not what you wanted to hear... However it sounds like you’re in excellent hands. Let me know what kind of Chemo they start you on. My Chemo was not bad and I just lost a little hair. I know that’s not that important. Im not sure what kind of cancer you have, I will pray for you. Thinking of you. Clair

[Mcap in reply to Clair19]

Thanks Clair, I have nueroendocrine breast cancer. About 1% of all breast cancers are this type. My bone scan shows metastasis to the scapula, femur, upper spine and skull. I was supposed to start on chemos Cisplatin and Etoposide. I spoke to my Dr. today and she said because of my poor hearing test she's going to change it up to Carboplatin and Taxo. Because I now have bone mets she's going to give me xegva. A lot of changes. She's concerned about the how fast it has spread to my bones. 3 cycles of the chemo then a scan. If it's working 3 more cycle. Then she will put me on a hormone inhibitor.

[Clair19 in reply to Mcap]

All the research said it’s very slow growing! It might be spreading because you or they where treating for reg Her2. I think once you get the right drugs it will slow down.Prayer’s for you!🙏🙏

[Mcap in reply to Clair19]

Thanks, hope that's true.

[Clair19 in reply to Mcap]

Hey I did some research and the one good thing is it’s slow growing. In the articles I read a lot will die of old age before the breast cancer would spread fast. It’s very rare, but I’m glad it’s slow growing.

[Kelly001]

Clair19,

You certainly will be in my prayers. I wish you all the best. I have 3 sets of the Falsodex shots. The most complaints I have so far is joint pain/3rd day & the itches/around injection sites. I do take Claritin & that helps me with the itches. I go back July 23rd for next round so at that time I am going to ask if I can take Aleve and see if that helps with the joint pain.

Wishing you the best!

Kelly

[Clair19 in reply to Kelly001]

Thanks so much! Yeah Faslodex easy to take.

[13plus]

Wishing the best for you Clair19! Perhaps try things like meditation or a Quigong class to keep the spirit calm and good energy going through your body and soul during these next few months? I know it can sound like a lot of baloney but meditation has been proven to have many positive physiological benefits so it would surely help some. (And now that I've preached that I need to go pick it up again myself!) The hardest part is setting up the regular ritual, but even a few minutes a day will help.

[Clair19 in reply to 13plus]

Your so correct on being positive.... I guess I’m not adjusting to the new normal as well as some. But I know he said there is another drug he can try since I just could not handle the Verzenio. So September will come before I know it and I pray everything stays stable. Thanks! Clair

[RomieRom]

Hi Clair19:

What is the name of your new drug?

I could not tolerate vercenzio either.

Stay strong!