Are you currently (or have you been) in a Clinical Trial?
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So glad you chimed in Cure thanks! Thanks RK!
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Thank you for the info on Camizestrant. I am following this one also and hoping to try it. My MO discussed the elacestrant with me today as I'm having a horrible time with Fulvestrant but I don't believe I meet FDA indications for elacestrant so if that turns out to be the case it sounds like Camizestrant may be an option. I will keep my fingers crossed.
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So.... I thought the trials pay for scans?? The scan place asked for my insurance?
I have MRI Brain tomorrow and then I have scan to see if trial is working Thursday... prayers welcomed!!!
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Hi Nicole, trial sponsors push all "standard of care" costs (which would include scans) to the patient/the patient's insurance in most cases. I would have expected the trial people to have confirmed before you started? Good luck with your MRI and scan.
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Nicolerod - My last trial paid for the 2 liver biopsies they required. I knew upfront that I would not get results from these biopsies. Some costs, like PK blood draws are charged to the study 100% but stuff related to standard medical care is run through my insurance and since I haven’t received any bills, I believe anything my insurance doesn’t cover is paid by the study. I know that to be 100% true for the ophthalmologist visit required by the study. Prayers for good results are coming your way. Please post an update. 🙏🏻🤞🏻
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Hi Ladies and Gents... ok Brain MRI done...all stable nothing new... Next up is trial CT of full body this coming Thursday. They are scanning 1 treatment short meaning you were suppose to scan at the 6 week mark (4 treatments) I have only had 3...but the trial coodinator said we should be able to see if its working...
Thanks for the info about insurance. etc. Keep you all posted thanks for cheering me on.
PS:...Wednsday the 19th is 4 years since I was diagnosed Stage 4...
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Nicole, yay for nothing new in the brain!
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Praising for nothing new in the brain. Praying for CTscan.
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Thanks Ladies!!
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Nicolerod - One down, one to go! Praying for more good news!
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Thanks RK!
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Hi I was just diagnosed with a recurrence that’s now Bone mets after being NED for 13 years. My Onc has don escans in Jan & Feb 2023 and again yesterday. I’m really worried treatment may not be working. Currently not in a clinical Trial but I am on a treatment plan with Verzenio, Falsodex & Xgeva. I was wondering if anyone has any experience with these drugs and how new they are for BC stageIV bone mets targeted therapy
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shanagirl - There is a Verzenio thread that you might find helpful. A CDK4/6 inhibitor (like Verzenio), hormone therapy (like faslodex) and a bone strengthener (like xgeva) is a pretty common first line of treatment for HR+ HER2-. Many see positive results. Verzenio was first approved in Sept 2017. Ibrance, approved in Feb 2016, was the first cdk4/6 inhibitor approved. Kisqali was approved March 2017. Good luck with your scan results
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Following and praying for you Nicole.
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Thanks Husband. sad to say..my bilirubin is back on the rise...so not looking good.
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shanagirl, here is the Verzenio thread that rk2020 was mentioning: Abemaciclib Verzenio for Stage IV.
Additionally, we also offer free weekly virtual meet-ups over Zoom that you might find helpful. We have a list of the different groups, dates and times here, where you can register for them: https://www.breastcancer.org/community/virtual-meetups. It can be a nice way to learn about the experience of others on various treatments, and be able to ask them questions in real-time.
Sincerely,
The Mods0 -
AACR is underway and ASCO meets in June, so this time of the year we get updates on clinical trials.
One interesting trial involves Moderna's neoantigen cancer vaccine. For the vaccine, they resected (cut out) each patients tumor for DNA and RNA sequencing, and then created individualized patient vaccines that targeted as many as 34 neoantigens (proteins on the surface of the person's cancer that are not expressed on normal cells). In a phase 2 trial, they then analyzed the effect of adding the vaccine to Keytruda, compared to Keytruda alone, for stage 3 and stage 4 melanoma patients. At two years, progression was seen for 40% of those treated with Keytruda alone, compared to only 24% for those getting Keytruda and the vaccine. There was no difference in response between those with high or low tumor mutation burden (TMB) for the combination group, whereas high TMB is required for the optimal response to Keytruda alone. These are exciting results and they are initiating phase 3 trials for melanoma and a variety of phase 2 trials for other cancers.
https://www.aacr.org/about-the-aacr/newsroom/news-...
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thanks for this cure - this whole vaccine thing is what I am most interested in seeing the results from, for a variety of reasons.
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Praying for you Nicole.
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Well that's all folks....
Trial failed I had progression and now the biggest tumor I have ever had is deep in my liver 13cm.
I believe now that my cancer is completely chemo resistant. I think there are therapies like the ones that showed response in the Travera test but my chemo will quickly stop responding. I have now seen this happen with gem/carbo and this trial. I think I should consider quitting now.
Just FYI to Cure...I sent my scans to NIH and told him it's been 6 months no new brain Mets they are seeing if anything is respectable but I am sure they will say no again.
I'm not feeling good mentally so I'm going to end this here. Thank you for all the prayers
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Nicole, I am so sorry that you didn't get any benefit from your trial, and that everything is failing so quickly. Maybe NIH will finally let your try their approach. My thoughts are with you and your family as you take on this new terrible news. Take care.
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Nicole I am heartbroken for you at this news. I don't know that you are still checking the boards but if you happen to read this just know there is a whole team of people here that are rooting for you. I still hold hope for the NIH option and as you are a believer, I also wish the Lord's comfort to you and your family right now.
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Nicole - My heart hurts to read your post. We are here to listen anytime you need us. You faced this disease head on with everything you had. I don't understand why things happen the way they do. I don't understand why cancer comes into our lives, but I do know that God is walking with you right now. I hope this provides some comfort.
Love, Regina0 -
Nicole,
I second everything that emac said. I'm sure that my prayers are among hundreds that are being sent up for you and your family. You have worked so hard to find every possible treatment to fight this. Still hoping that something will turn it around.
Eleanora
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nicole - many prayers are with you! Hoping NIC or another option is your magic bullet. ♥️
cross posting from the liver mets site:
I am also looking at my next treatment. Thank you for sharing your thoughts and insight!!
Dx metastatic 1/2017
ER+ PR-, HER2 low
5 yrs on I/F..yay!
6mo afinator/Aromasin
6mo afinator/tamoxofin
In nov Onc and I theorized I am likely endocrine resistant and the Afinator never really worked as my markers and PET results continued to climb modestly. So I went off treatment as the next would have been Xeloda and she thought my disease burden was too low for such a strong drug. 4 mo later PET shows many new bone sites, progression in existing sites as well as new mets to the liver....ugh, guess we were wrong about Afinator and I am ready for a stronger treatment.
Options seem to be:
1. Xeloda
2. Elacestrant and maybe Ribociclib?
3. Verzenio alone or with Elacestrant?
4. A trial?
Wondering if Xeloda could reduce the efficacy of the CDKs or if it would be better to out more time between the Faslodex and Elacestrant with Xeloda?
Also wonder about
FES PET - my onc isn't that interested she don't think it tells enough if we are endocrine resistant or not
Travera - not sure I can get a biopsy on the new liver mets
With much gratitude for the generous sharing, study and translation of this path we are on.
Hugs, Allison
✨I am trying live each day as it is new and can bring miracles!✨
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Dear Nicole, uhh... I am so sorry for what happened, I was away. But we still have vinorelbine and TDXd foreseen for you. I am always hopeful. Always! Hugs,
Saulius
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Well …I failed the trial I think most of you know from the Clinical Trial thread. I am going to the NIH to consult on Tuesday but not counting on anything coming from it they made it clear that people go through the whole process and then can be elminiated at last minute. Couple of things you all should know about the CAR-T trail there:
- Breast Cancer is the worst to work with …and once they extract your cells and work on them, for breast cancer it takes 4-6 months to work on them.!!!! I will probably be dead by that point and even if I am not…you CANNOT have progression during that time.
2. You can be on treatment during those 4-6 months
3. You must have a fully rescetable tumor in an area they want and it must be the KIND of tumor they want.
Even if I make through to have the surgery I am fairly certain that I wont make it past there bc 1. I will progress and 2. I have Low Mutational Burden.
My oncologist wants to go to Enhertu next… **sigh. I am not that thrilled bc honestly I don't think I am going to have success on anything at this point. I think I am too heavily pre-treated and what is happening is my cancer sees a new treatment and initially responds and then literally, 2 weeks later stops. I am considering after this just giving up.
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I am so sorry to read this Nicole. Heartwrenching.
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That NIH trial has been impossible for me to get into also, which is endlessly (well, until the end) frustrating. I would encourage you to try Enhertu. I’m so sorry this is happening to you, and to all of us here.
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