Are you currently (or have you been) in a Clinical Trial?
Comments
-
You guys are the best people....
Nkb, I think there are still many gene mutations or alterations (like amplifications or deletions) that can lead to breast cancer that have not yet been identified, so this may be contributing to the 31% (so high!)- for women without family history the odds of getting breast cancer in a lifetime are 13%, which is already high enough
0 -
Nicole- Here is a trial in Pittsburg PA, uses TILs but I don't think it adds on checkpoint inhibitor? Three or fewer brain mets are allowed so long as they are treated & stable...
0 -
nkb - Fascinating. Thanks for sharing. I have a daughter as well, so the testing will benefit her as well. She is only 6, so hopefully, if she does happen to have a higher risk, science will evolve a lot if she is ever affected.
0 -
Cure-ious- yes, my geneticist says the genes are there we just don't know which ones they are yet. My daughter's risk will decline as she gets older, in the meantime the recommendation is a yearly MRI in her 30s and add in a mammogram yearly (alternate every 6 months) in her 40s.
I was told there are some genes that can affect our sons chance of breast cancer also.
0 -
Husband, Thanks for bringing that up!!! I have a friend in the bay area who got this vaccine, along with surgery, radiation and immunotherapy at UCSF, its just so impressive how hard they hit TNBC in the early stages now, esp if its a dangerous case!! The trial reported 89% are still doing well at two years, which is really big given that for TNBC, most of the Stage IV disease develops within the first five years...
https://www.nature.com/articles/s41591-023-02210-0
0 -
The only response I received was from the moderators yesterday. I forced down a few of the enterade drinks, but they didn’t do anything for me and I couldn’t tolerate the taste
0 -
My health anxiety comes and goes. It’s been bad since my mother was diagnosed with cancer. She’s currently homebound and lives alone so I’ve now become responsible for making all her meals and putting them into individual serving containers that she can freeze. Otherwise, she won’t eat and she’s lost about 25 pounds in the last year. She’s skin and bones. I’m trying to get some services for her but she lives in a different state than I do and I’m having trouble finding resources. I’m doing all of this while working full time as a teacher so right now I can’t fit an appointment for myself into my schedule. My mom has given up trying to help herself so it’s either leave her to waste away, or do everything for her myself. I was hoping to get in to my doctor during spring break, but that’s when I have to take my mom for all her doctor appointments and tests so it doesn’t look like that will be an option. I will definitely try if I get a free day.
I do hope you are right that the chances that I have cancer are small, but I went down the Google rabbit hole and I couldn’t find any other reason for the symptoms that I have and for the length of time I’ve had them.
I do appreciate your response. It helps me to talk about this with people who understand.
0 -
After the initial mixup of the posting compliance, I hope we can refocus on the contents and questions in the post.
Hello Alice,
I am sorry, I do not have any medical credentials or claim any expertise. Just like many people impacted by this disease, I have spent a lot of time researching how people have tried to treat it. I estimate in the last 6 months I have spent over 400 hours reading studies aggregated in PubMed. While I am not a medical doctor or even a scientist, if I immerse myself in something, I can comprehend the material. After reading (and rereading) the results of dozens of studies into high dose vitamin C, in my non-medical opinion it seems like there is enough evidence for oncologists to at least consider incorporating this as an adjunctive or complimentary treatment.
My hope is some members of BCO have experience discussing this treatment with their doctor, and have received support from their medical team to include it in the care plan. I would love if those folks can provide input. I am also happy to answer any questions about what I have discovered.
0 -
I remember a couple of years ago on the Catholic channel on Sirius radio one of the hosts (I think from “Seize the Day”) walked the Camino and did part of his show where he visited with others doing the walk. It was very interesting.
0 -
bestbird, all these comments are so true. Your research has been helpful to many of us. Forthright and eloquent. I hope this stage gives you and your family comfort.
0 -
Hmmm. "lump it" on a breast cancer forum.
You have a way with words, Wrenn!! Hey there Alice!!
0 -
Thanks. I will see what we can do to get it in LaCrosse.
0 -
Knowing Chevy from the Oldies forum, I believe she will find enjoyment in her new home. I always enjoyed her photos of her back yard garden. She had/has strong family relationships. She was proud of her nephews who would visit her.
0 -
Cure-ious,...Great information. I literally cut and pasted your comment into my notes section of phone and will talk with MO about these when I see her next time. Thanks so much!
0 -
rk2020,
Apparently the FDA has put a hold on BLU-222 due to the visual disturbances you brought up, blocking new patient enrollment while they investigate what is going on. Your participation is incredibly valuable, obviously.
https://www.onclive.com/view/fda-places-partial-cl...
Patients already on the trial are allowed to continue taking the drug. However, OncLive says: To date, patients have been treated with BLU-222 at doses ranging from 50 mg twice daily to 800 mg twice daily, with evidence of clinical benefit and no discontinuations due to AEs" So from that it seems that nobody in the trial is dropping this drug due to side effects? Perhaps the nurse meant everyone who started on the highest dose has now dropped to a lower dose...
Regarding your TMs, is it possible the increase is just a tumor "flare" due to dead cancer cells, given that you have some tumor shrinkage? It seems the scans are the key things to focus on here, along with finding a dose you are comfortable with. I doubt anyone knows if lower doses are effective yet, because fewer people would be in that category, so I wouldn't worry too much about that idea- your MO may have wanted you to stay on the high dose because it is working (!) and they want to see if you get even more shrinkage on the next scan.. Blueprint pharma says they are confident in their drug and stand by their data that the benefit to risk ratio is high, and says the eye problem can be resolved by dose reduction or delay and that nobody has had any problems in eye exams, so they are working with FDA to release the hold.
There are other approaches in the pipeline to inhibit CDK2. One report screened a drug library and found a leukemia drug, homoharringtonine, was able to block binding of CDK2 to its activating cyclin and that caused CDK2 to get degraded, so this may be a different way to inactivate CDK2. Also pharmas are surely making PROTACs against CDK2, again to selectively degrade it, however these alternative approaches are not in clinical trials and who knows how long they may take to get there, if ever.
https://www.nature.com/articles/s41467-022-30264-0
Hopefully you can stay in the trial, find a dose that works for you, and focus on what the scans show. You already got tumor shrinkage started and more of that may be seen in future scans...
0 -
Well we are going to Florida tomorrow to consult for trial... the drug is an ADC...similar to Trodelvy but showing much better results especially for mTNBC... we will have to stay there for 6 weeks if I get accepted. We are going to stay in a military fisher house (like a ronald mcdonald house or hope lodge but for military members ) im nervous bc there are 16 other families in the house and this drug is known to lower neutrophils etc... The other thing is they scan CT scan NOT pet at 6 weeks... I think and my MO agrees that is way to early...but it is what it is they said thats the scan time end of story... We will go down for the consult this week then if they accept me we will go back to start trial in about 2 weeks...
0 -
Nicole,
I have worn a N95 mask since covid started, whenever I go out around a lot of people in small spaces, and I have not yet contracted covid. I was a N95 fit tester for a tuberculosis program and know that N95 particulate respirators are protective (even down to the very small measles organism), unlike unsealed surgical masks. I prefer a mask with a vent, because it offers some breathing comfort for the wearer. I reuse my mask until it gets dirty and keep it in a small zip lock baggie. We gave this same advice to staff who worked with active TB patients. My preferred mask is the 3M AURA 9211+ PARTICULATE RESPIRATOR W/ VALVE. I buy a box of 10 from EBAY. There are other brands and shapes available. The shape of your face will determine which mask is most comfortable. Wearing a mask at times, may reduce some of your concern.
Note: the 3M AURA has a metal nose piece, so I DO NOT wear it for scans. Other brands of N95's have plastic nose pieces.
0 -
Your hard work and determination have paid off. Fingers crossed that you are accepted.
Can you get an air purifier for your room at the Fisher House? If the a/c vents are communal, have they installed the high grade filters that were recommended early in the pandemic for schools and other communal facilities? Your immunocompromised status should be given whatever accommodation they have. Their goal is to help you, not expose you to increased risk.
Rooting for you.
Eleanora
0 -
Curious - Thanks for posting the information about the arthritis drug trial. I had to have both knees replaced back in 2015 due to what my orthopedic surgeon believes were damage from the aromatase inhibitors I was on starting in 2010 when I was stage 2B. Now I think the Ibrance/XGEVA/Faslodex depleting any other estrogen in my body is why I suddenly developed lower back pain and sciatica and aches in a few other places. It would be wonderful if it works and of course for us breast cancer patients if it did not interact with our medicatons/trreatments.
0 -
I heard that there was a new phase 1 trial for Enhertu in Her2 zero- anyone know anything about it?
0 -
Dear nkb, was it not the same trial as for her2-low (DB-04) that also recruited her2-zero? If not, I still remember Dr. Tarantino's excitement that her2-zero produced some 30% responses with TDXd (if I am not mistaken).
Now, there's another very interesting trial for her2+ people: https://www.cancertherapyadvisor.com/home/cancer-t...
I am still waiting, as one secret forum member here stressed, for an ADC with eribulin as a payload. Eisai, I think, is ready for that (https://us.eisai.com/our-science/discovery-centers...) but no clinical trials as of yet?
Saulius
0 -
cowgal
Is it possible that some of your pain is from arthritis? I have arthritis that required a hip replacement in 2019, just a few months before my initial DX. Prior to the replacement I used celebrex. I have more joint pain now (thanks Kisqali/fulvestrant/Xgeva!) and recently asked my MO for a celebrex prescription. It has definitely helped with no perceivable SEs. The one thing we need to watch is kidney function, as both Kisqali and celebrex can affect that.
Just a thought.
Eleanora
0 -
Thanks Eleanora. I have thought about taking something like Celebrex or mobic but have tried to avoid it because of some of the harmful side effects in addition to the ones we already have from our cancer drugs but I may have to give in.
0 -
Hi Everyone,
I wasn’t sure where the best place would be to pose this question, but thought I would start here.
Is anyone aware of situations where hormone targeted therapy has stopped working, the patient moved to chemo, and then went back to a different hormone targeted therapy?
In doing some research, it seems there might be some evolving evidence that changing CDK4/6 inhibitors could be effective, although that evidence seems to be mixed at the moment.
At the moment, I am taking an oral regimen of Cyclophosphamide and Methotrexate. I’m only on my second cycle, so don’t know yet if it’s working. I was on Kisqali/Letrozole/Zoladex for 3.5 years, and then moved to Faslodex for 10 months. I did have a good run of the Kisqali combination. Enhertu has been discussed with me as a potential next option. My oncologist does not seem very keen Elacestrant, and it’s not approved in Canada yet anyway.
I have been told many times (because I ask a lot) that once endocrine therapy stops being effective, a change to a similar class of drug will not be effective. But it seems there is evolving research that shows otherwise. I currently have fairly minimal tumour load and my cancer continues to be described as indolent. It also seems that funding (at least in Canada) seems to be a road block for trying a different hormon treatment.
Anyways, long explanation, but just wondering if anyone has heard of re-visiting CDK4/6 Inhibitors, even after a few lines of chemotherapy in between? Posting here as there may be clinical trails exploring these options that someone is aware of. Or even if this option is being used as Standard of Care at any other centres.
Thanks,
Anna
0 -
Bsandra, the person starting the trial for Enhertu said it was Phase 1 trial for Her 0, so I thought not Destiny 04.
The trial you cited for eribulin looks interesting also.
Missmonty- I am interested in this also, if anyone knows.
0 -
missmonty, my wife benefited from palbociclib and letrozole for several years. Then her tumor markers began to rise. She switched to abemaciclib and exemestane, and it lowered her tumor markers for another year.
Back before there was tamoxifen, they used to treat women with male hormones and estrogen high dose for breast cancer. Some oncologists found they could alternate between the two therapies when one stopped working. Both strategies are outdated now, owing to side effects, but it does show that some breast cancers can return to hormone sensitivity. I read one study where they purposed that taking high dose melatonin restored hormone sensitivity, (P. Lissoni), but I don't belive I ever saw any further trials to back that up.
0 -
Thanks Husband11 and nkb for chiming in. Hopefully others might have additional insight to share.
I do trust that my oncologist is making sound recommendations for treatment options, but I am concerned that more lines of chemotherapy will preclude me from being eligible for newer, innovative targeted treatments, and/or clinical trials. Also, I know that being PR negative may have an impact on how well hormone targeted therapy could work which is likely factoring in to treatment options. Right now I don’t have a choice but to go with chemo. Hoping this oral combination works for at least a year and we have some more targeted options at that time. Enhertu does look encouraging.
0 -
MissMonty,
MOs like Hope Rugo have pushed to stay on endocrine therapy as long as possible. Switching around among CDK4,6i and endocrine backbone (Faslodex, AIs, SERDs) seems fairly common at this point. And after chemo it is possible to go back to endocrine therapy, tho it may not work as well as at first.
PR-negative is not always bad news for endocrine sensitivity, my cancer is similar to yours- I have skipped around on Femara-Ibrance, then at progression moved to Faslodex-Ibrance, then had foot neuropathy from the Ibrance and moved over to Verzenio, has been 7.5 years alltogether.. After CDK4,6 inhibitors, it may be useful to combine endocrine therapy with other drugs, like Everolimus, or switch anti-estrogens to enobosarm, or even try some immunotherapy combo, rather than move to chemo.If it is not clear if the cancer remains endocrine-sensitive it may be possible to get a FES-PET scan, which lights up the ER-sensitive mets
Some SERD clinical trials are moving into phase III with rather short timelines so more SERDs may be coming to the clinic; phase III is not optimal since you might get on the control arm, however it does allow for more bone-only mets.
0 -
To all, It is now coming up on a year since the Moderators decided to do a big "Upgrade" to this site, and in their massive incompetence completely blew it up, and we are working in the embers of what's left. On Mar. 16 last year I was already fed up, writing how the mess was made even worse by the moderators' patronizing & gaslighting comments about their f*up: ..." we upgraded parts of the Breastcancer.org site, which has caused unexpected tech issues for some people"... Perhaps they have spent the year learning how to code in order to create a new site, tho it certainly does not seem to be going particularly well and they do not seem any more accountable or transparent than they were at that time.
In the meantime, a great number here have died. I was just reading some comments from a year ago, and SusaninSF was so excited about plunging tumor marker numbers from her latest trial, and she has already passed on. I wonder that there isn't someone here who would be able to make us a new site? Its just too important to leave to the clueless...
0 -
Here is an interesting new drug: Zotatifin
Zotatifin is an EIF4A (aka eIF4E), a protein translation factor inhibitor, and is predicted to help with mTOR-driven mutant cancers.
Last month it was announced that in a small trial with only 7 patients (ER-positive MBC) who took Faslodex, Verzenio and Zotatifin, two had tumor shrinkage and one was stable for more than six months, with data on the others to be reported later as the data develop. They say they are going back to see if a higher dose is even more effective before moving more broadly to phase two. They are expanding an arm to look at those whose cancers have cyclin D amplification, which can develop upon resistance to CDK4,6 inhibitors. However, at this stage it is an IV med, presumably they are working to get an oral pill before moving too far along with trials. https://www.targetedonc.com/view/zotatifin-with-fu...
0
