Clinical Trials

[beachlover65]

Hello Fellow Fighters! I have been stage 4 with mets to bone and liver for 4 years. I went through 7 different treatments and was about to start abraxane in April. My oncologist was not excited about this because I already have neuropathy from taxol, and abraxane would most likely make it worse. I had been encouraged to find a clinical trial, so I was to 3 other facilities to present my case and see what may be possible. I was told unfortunately nothing was available for me right now. The day I was to start abraxane, my own small town cancer center found a clinical trial for me! So far it has cut my tumor marker in half! The side effects are very manageable, and I am so grateful! I encourage everyone to have their cancer genetically tested - so you know what genes can be targeted (mine is AKT1) in your treatment. Also, this will help you find appropriate clinical trials if needed. My genetic testing was paid for by the company - you submit your information and they will help pay for it, if not pay it for you. The drug I am on was originally made for prostate cancer, but it appears to be working for me too! I have a scan next week to see how well it's working, but I am happy that my marker number is going down for now! I am writing this to help anyone out there that I can. I hope the very best for all of you! May you all find peace and comfort in your days!

[Hidden]

Wow!! Like, seriously, WOW!!! That's fantastic!! I'm so happy for you and you really are an inspiration and give hope to all of us, I'm sure! Not only does the new treatment appear to be working, but you are a role-model in terms of how tenacious you were in finding it!

Thanks for sharing...Wishing you great success with the trial!

Lynn

[beachlover65 in reply to Hidden]

Thanks so much, Lynn! We are all in this fight together!! Some better treatments have to keep coming. I am grateful for how far we've come so far. I doubt that I would still be here otherwise!

[Hidden]

This is exciting news. I asked my oncologist about genome testing but in Canada it isn’t covered. I may have to reach out to the company that does the testing to see if they have any options for funding. I am on my third treatment with Abraxane and while it isn’t as bad as I thought it would be it certainly isn’t a walk in the park. Sitting here feeling sorry for myself. A friend told me she went to Germany and had treatment and they have numerous things available that we don’t. I guess we all need to find a friend with lots of spare rooms to put us all up in while we have some of their treatments.

I wish you good luck with your trial. May it give you back your life ❤️

[beachlover65 in reply to Hidden]

Sarcie, please reach out to the company! Check out Foundation 1, and also Genomind. They may help you get the testing you need at no, or little, cost to you. I paid nothing. Without the testing, I would never be able to do the trial.

[Hidden in reply to beachlover65]

What country are you in ?

[beachlover65 in reply to Hidden]

I'm in the U.S. and have private insurance. These companies try to get money out of the insurance company first, of course. I know they won't get any money from mine - they've denied the claim at least three times already.

[rubyc1234 in reply to Hidden]

What is the difference between genetic testing and genomic testing? I had the genetic testing done and in all the genes tested there was nothing hereditary. So does genomic testing differ and if so in what way?

[Wintervt]

So glad to hear your tumor markers are down! What clinical trial are you participating in?

[beachlover65 in reply to Wintervt]

Thanks so much! It's a MATCH trial.

[MyMiracle13]

That’s fantastic news! May I know if the medication given to you which you said was originally made for prostate cancer is something that’s already in the market but has been repurposed? Or is it a new prostate cancer drug? For the genetic testing that you had, was it biopsy of the tumor or was it blood biopsy. I’m very much interested in the genetic testing but I will have to send the sample to the US because we do not have any facilities for it here in the Philippines. May this new drug work more wonders for you🙏

[beachlover65 in reply to MyMiracle13]

They used blood and liver biopsy. This is a trial drug. I would recommend that you get genetic testing. I hope you are able to do it! The companies that do it are great about getting it paid for. I wish you all the very best!

[MyMiracle13 in reply to beachlover65]

Thanks for the very valuable information. I will check out Foundation 1 and Genomind. I don’t know how to get my samples to them though but maybe when the pandemic is over...

[beachlover65 in reply to MyMiracle13]

They will tell you what to do. You shouldn't have to wait until this crazy virus time is over! I wish you the very best!

[Bubbles001]

I have cancer to liver and bones and just found out my cancer has ATK1 (5%). Would love to know which trial you are in. Congrats on the tumor reduction!

[beachlover65 in reply to Bubbles001]

Hello, it's a MATCH trial, and the drug is called Ipatasertib. I'll let you know how my scan next week looks. For now, markers down and very tolerable side effects!

[Bubbles001]

I have heard of that trial. I think my institution is participating but not accepting new enrollments. I’ll visit w my onc about it. Thanks!

[SeattleMom]

God bless you, Beach Lover! So happy to read your wonderful news!! XXOO Linda

[Klamato]

Thanks for sharing this very important information! The more we know, the better choices we can make! This disease is an ongoing battle for all of us! So, God bless you with success going forward! Kathy from Syracuse, NY

[mariootsi]

You give us hope! You are very brave as all the women here who are in clinical trials.

[WordNerdSharron]

That is such good news! Congratulations!

[ChrisVict]

So glad you found a trial for your specific mutation. I did test but their are no active trials for mutation they found. So I am on

6 treatment counting the original chemo Followed with anastrozole when I discover I had BC for 1 year and then MBC Onto hormonal mixes upto Everolimus and exestamane . If I progress I really need a trial.

[beachlover65]

Hi, just want you to know that my cancer progressed on the trial. I am now back to a chemo - my 12th different treatment to fight cancer. My doctor is still positive with me - she showed me how much of my liver is still good and told me that we still have more drugs to try. So stay positive too! They are developing more drugs all of the time!