My very long time (20 years!) MBC changed from E+ to triple negative a few months ago and yesterday I was looking on line for clinical trials for TNBC and found one that looks exciting to me, whether I qualify for it or not. It's sponsored by Lyell Immunopharma and targets CAR T cells. I have no idea whether I have those or not, but I found no other trials for triple negative MBC, and treatment options seem rather limited.
Xeloda seemed to be working for me but not for long and now I'm on Taxol. My CA27-29 has come down by half (no where near normal) and the neuropathy is getting worse in spite of lower dose, so another option is appealing!
I keep telling myself that compared to people living in so many parts of the world, I have it very very very good! No bombs, enough to eat, family members are safe, etc...... plus really good medical insurance!
Written by
PJBinMI
To view profiles and participate in discussions please or .
I was looking at this clinical trial and the one word of caution to you would be that this is just a phase 1 trial which means that they are strictly trying to determine the safe dose. As Kerry mentioned below CAR T cell therapy has done wonders for blood type cancers but so far the results have been dismal for solid tumors. Please let us know if you do decide to participate.
you have such a good attitude. I agree with you. I am now 70 yr old. Have metastasis since age 62. I never thought I would see age 70. I give all the glory to Jesus. My liver and bones are in His hands
No stress any more I have too much to be thankful for as it seems you do too
You do have T cells because it’s the basis of our immune system. There’s been success with CAR-T and blood cancers but so far not really good results with solid tumours like ours. You could be in the vanguard of a new way of treating breast cancer! I’m not sure that we’ll get it here too soon as it’s expensive to design an effective killer cell army but once it’s proved to work maybe mRNA technology will bring the costs down.
Hello lovely.I am sorry to hear your cancer has changed.
I was diagnosed er+pr+her2- in 2022 de-nova. After 4 different lines of treatment including 2 clinical trials, I kept getting progression. Mets in most of my bones, liver and lungs.
I am now trying Sacituzumab govitecan as I pushed for another biopsy I found out I had changed to TNBC with pik3ca and TP53 mutations.
There are more treatments than before. I am hoping to see about a trial,phase one in Sydney as my next step if this treatment doesn't work.
Unfortunately I can't get on keytruda for free here, but I only found out recently you have to have a certain level of this mutation for it to work.
I had my biopsy thoroughly tested with this group, so I can be on the radar for trials.
It's like with all treatments some work, some don't as we are all individuals.
I was told to get my affairs in order, but I am not giving up if there is hope.
I am very grateful to, to be able to get access to healthcare and food on my table.
I hope you can get on the right dose. Twenty years is amazing and gives me so much hope.
It's wonderful that you are staying positive with everything you are going through especially with neuropathy. Prayers that there's a clinical trail that you would qualify for and I know that there will be in the near future more options for TN. I too remind myself of how fortunate I am. I always think back to Victor Frankl's "Mans Search for Meaning." I understand your issue with neuropathy, I have it also in my left arm and hand. It's due tumors pressing on the nerve. It would be great if you can get on a clinical trial for CAR T cell therapy. I read that Mayo clinic was doing these trials for metastatic breast cancer for TN. It's been one of my worries subconsciously that my cancer will mutate. Prayers 🙏 and hugs 🤗, Alicia.
PJB- the car-T looks promising. I’m sorry xeloda might be stopping working. So good to have choices.does you dr say thst all pts will become triple neg if they are Metastatic long enough? Is thst a thing? So interesting and thank you for helping me learn from you.
That would be wonderful if this trial could work for you. CAR T-Cell Therapy in addition to other immune therapies hold so much promise. My neighbor who lived far beyond his multiple myeloma prognosis was a huge advocate for participating in trials. He participated in phase 1 trials several times and credited trials with his ability to live longer than he was told.
I heard a breast cancer specialist speak about trials and she said in her experience “women who avail themselves of trials tend to live longer.”
Agree, I like you feel blessed every day when I see so much suffering in the world. I am so fortunate in comparison. 🙏
I also like to boldly go where others fail to go 😄
Great attitude. When I was on Taxol I wore mitts and booties which had removable ice packs to help prevent neuropathy. I had two sets and had to change during the infusion. I hate being cold, but learned to cope by listening to meditations on my headphones. I actually fell asleep. Taxol di not work for me. I have been on Enhertu for nearly 2 years and have had a very positive response. I, too, realize how fortunate I am to have so many privileges at age 75. I am trying to focus on giving back in whatever way I can, even if all I have to offer is prayer.
Mass General in Boston just announced dramatic rapid progress using CAR T-Cell Immunotherapy in a Phase 1 trial on glioblastoma tumors. It is exciting to see the scientists pushing the boundaries into all types of cancers with this treatment. If it were me I would definitely pursue the CAR T-Cell Immunotherapy trial for breast cancer. I will be asking my own team about it.
i think Duke staring triple negative trial use polio virus to trigger immu respond they been promosing doung on glioma brain tumor and now they try to melanoma also i rhink triple nwgative breast cancer
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
trial 
interesting Xeloda trial
Does anyone have CtDna blood test added In their monitoring routine?
Exelixis Clinical trial XL091 pill and Tecentriq (Atezolizumab)
