Are you currently (or have you been) in a Clinical Trial?
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I also wanted to mention that in my support group, Bay Area Young Survivors/Mets in the City, the length of my metastatic survival is nothing exceptional. We had one woman who lived over twenty years, another more than fifteen, and several who are still alive and doing well after ten years. And by "doing well" I mean doing things that would be exceptional for people without cancer like going on long, challenging bike tours, climbing mountains, doing solo cross-country camping trips. The group is for "young" women, 45 or younger at first diagnosis. At 57, I am now one of the oldest since my first, early-stage diagnosis was 21 years ago. Our youngest member is 27.
I bring this up so that you can all see that, particularly with all of the new drugs coming out, long-term survival, perhaps even a cure, is a reasonable aspiration.
Big hugs to you all, Susan
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Hi, it is very interesting about androgen receptors and the possible treatment, I have read it before, that actually it is a good thing to have. In my single liver met that was found almost four years ago and resected more than three years ago...I had 99% of androgen receptors, I was only on exemestan for half year since it appeared and before resection and it grew may be couple milimeters during that time as well as Ki 67 of this met was only 10% so no agressive. Since that resection my liver is OK, I have appearing troubles in my spine, although it is still oligomets so may be because of the androgen receptors I have. I hope we would have here so many trials as you do. Here nothing interesting I would qualify even in neighbouring countries. And Cure-ious the liver mets can be very well managed by different ways. I have friend de novo with liver mets, she is doing fine five years after diagnosis. My liver met was actually found by USG at my GP accidentaly at preventative exam four years after stage one. Marketa
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Maaki,
Since you are in the EU, are you able to take advantage of clinical trials in nearby countries? Or does that nor work with respect to healthcare? You are so close to Vienna, it would be great if there were trials there (my daughter lived in Vienna for a year and we visited Bratislava together so I know how close the two cities are.) Also, I thought that Germany (a little farther) had a lot of things going on with cancer treatments?
In any event, good luck in finding some additional answers.
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Thought I would post this chart from my trial. The number of participants from ARV-471 was low but the outcomes are promising. I am on 500mg which is much higher than this early phase trial data.
Dee
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That sounds really promising AlabamaDee. How are you feeling on it?
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Husband
well the chart did not include achy muscles and joints. I feel like when I was on the AI’s. I have been on it 30 days and no nausea or vomiting or D, my EKG’s are fine. I have had some weight gain. But that could be Christmas and less exercise due to cold weather. Scans and plans are Feb 15.
Dee
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Dee,
That Phase I data looks remarkable! Thanks for sharing and I wish you the best on this new trial.
Hugs, Susan
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Susan, Thank you, your young survivors group are a huge inspiration for us old survivors, too!!
Maaki- The AR booster drug is planned for phase 3 trials to start this year; normally those would be widespread with many sites in europe. Perhaps they will be expedited and approved quickly. 99% AR in liver mets, this drug is clearly designed for you! As it turns out, AR is apparently even more widely expressed in breast cancer than estrogen receptor, so some triple negative and HER2 cancers have it too..
Dee- How did I not realize you are on the ARV-471 trial?! Looking at that chart, even though its from phase 1 they are already getting clear evidence that it works- 42% clinical benefit (meaning stable or tumors shrinking at 6 months) just from monotherapy, even if its derived from a rather small number of patients so far, is very impressive given that this is a population that have already progressed on Ibrance with AI or Faslodex. One would think this has to get fast-tracked by the FDA! Anyway, it is wonderful that now you get to be part of the group that determines how good their final phase one numbers look
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Thanks BevJen and Cure-ious. Yes I can do trial in Vienna (it is one hour driving) or in Czech republic. But what I looked I dont qualify. I was looking for serd or serm or even now the androgen receptors modulators. I used almost all hormonal treatments and two CDK4-6 (AI -exemestan at the beginning of MBC than kisqali and faslodex and now I am on verzenio and letrozole), so I guess they will not accept me since in the placebo arm is usually hormonal treatment. I hope verzenio will work for some time. And I still can try parp inhibitor since I have probably pathogenic Brca2 VUS. But it is so beneficial to know from you different possibilities in the futur
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A recent wide-ranging Q&A with Dr. Lin, MO at Dana Farber on all MBC subtypes.
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I came down with covid. It is not an extreme case, but I did get the monoclonal antibody infusion today.
I just have to brag on my trial team. my trial nurse has really advocated and worked hard for me through multiple emails last week and today. I am continuing to take the ARV-471 pills, I missed 1 appointment but I was able to get my bloodwork done at the clinic where I got one of my 3 tests(long story😉), my trial biopsy is only pushed back a few days so life on a trial presses on in spite of covid! Biopsy Feb 4, scan & plan Feb 15.
My CA15-3 and CA27-29 both went up a little over the last month, but liver enzymes are normal again and WBC,RBC are almost normal after being low. My biggest SE is the arthralgia/myalgia.
I am hopeful this trial will work and give me some good results. I need to coast for a bit! 🏖
One of my sons told me now that I have covid, I should go to the beach in March because he knows how much I love it and haven’t been able to go since before covid. I told him I would rather go see my almost 83yo dad who is finally getting the vaccine on Friday!
Dee
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Oh, Dee, it never rains but it pours!! The antibodies are a fast way to get that anti-viral immunity going, and I hope you feel better already!
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Dear Dee, we all hope you get better soon. Damn covid-19 but you'll get through this. Holding my fists.
Dear SusaininSF, wow, what a message from your Bay Area Young Survivors... I mean I always try to encourage (although feel down and discouraged myself so often) stage IV members of these forums to push forward and believe that the cure is possible, and if not today, it is pretty close round the corner. I finally see steps to cure stage IV BC, and race for this has started. Therefore we have to hold on, believe and fight, and with every day we will get closer to this. So... thank you. Such messages are more than welcome here. Hugs,
Saulius
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this PARP trial showed up on my radar today. PETRA
https://clinicaltrials.gov/ct2/show/NCT04644068#contactlocation
at MDACC, plus NYC and Australia. What caught my eye was the 613 enrollment in phase 1.I will put it in my bucket
DEE
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interesting, Dee- test new PARPi alone or with chemos; does not seem to require BRCA mutation
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Here's a new one for her2+, TACTIC-2, might be CAR-T?- anyone know what this is doing? Must have progressed on two prior Her2 treatments..
https://www.clinicaltrials.gov/ct2/show/NCT0472715...
Also, FDA is fast-tracking another (Enhertu-like) HER2-directed ADC, which can also be used for Her2-low cancers
https://www.targetedonc.com/view/fda-grants-fast-t...
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A new paper in Nature looked at cancer cells with aneuploidy (multiple copies of chromosomes or chromosome parts, broken chromosome arms, etc), which is very common in breast cancers. They found that these cells are sensitive to inhibitors of mitosis/cell division. It's rather complicated, because initially the cells are more resistant to these drugs but once they try to duoplicate their genomes they get very screwed up and die. There is a class of drugs in clinical trials, the TTK inhibitors, which block this cell division step, and are already in clinical trials for breast cancers. Those trials are focused on cancers that have high levels of TTK kinase, but this paper indicates that really any cancer cell that has aneuploidy should be sensitive to this drug, and that the killing may be higher the longer one goes on treatment.
https://www.nature.com/articles/s41586-020-03114-6...
One TTK inhibitor drug is being tested in Canada with faslodex for ER-positive cancers that have progressed on CDK4,6 inhibitors, and I think we may have already discussed this trial here?:
https://www.businesswire.com/news/home/20200827005...
The drug actually works better on CDK4,6i-resistant or RB-deleted cancer cells than on endocrine-sensitive cancer:
https://www.pharmacytimes.com/conferences/san-anto...
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Hi all,
Cure-ious - you brought up 2 drugs that I've actually been in trials for, although my experience on both was short. I was in a GTX-024 (now enobosarm) trial for the AR+ back in 2017. I had enough progression after 3 months that I was "lefted". They never did tell me my AR+%. One interesting takeaway from my intake - it's a drug that people actually feel better on. I don't recall a single side effect.
I was just in a trial for the TTK inhibitor here in Canada (in the single agent arm). Again enough progression after 2 months that I left the trial. It was borderline. Again no particularly bad side effects (I think the headaches were not related), but mostly I've steadily been feeling worse since September.
I started abemaciclib in mid-December. The diarrhea is real but somewhat sporadic, but mostly I'm now crushed with fatigue and my physical activity has plummeted (no more dog walks:( and I plan stair trips). My oncologist has ordered a CT because he doesn't think it's from the abema. My mets are now mostly the pericardium and various tumours around the heart. So now I wait.
I've been reading through the posts I've missed. I'm sorry to hear about you developing covid Dee - but glad you could stay in the trial. SusaninSF - great that you are still on the Trodelvy trial. Good luck to everyone else navigating changes.
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NewGardener, Thanks for weighing in, I was sure someone at least had the TTKi. It;s the problem with these drugs at present, that they are using them as monotherapy and in that way they don't last long. But they could be good or even great drugs, Faslodex alone is also only a couple of months PFS. Those ADC chemos Trodelvy and Enhertu should be better, and better still combined with other things maybe even immunotherapy. For Versenio, it can work a long time as monotherapy, I know Luce got maybe two years on it that way...I had bad fatigue when starting Ibrance, but my body adjusted to it after a few cycles and it eased up, hope that happens here
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Got my scan results last week and all looks stable so I will continue on in the Trodelvy trial. In the middle of my 17th cycle. Will be a year on this trial on February 18th! Hyperdensity on my liver is, so far, not looking like cancer but we will watch it. Whew! I suspect it is due to the toxicity of Trodelvy since it showed up about three months after I started on the trial.
Feeling increasingly fatigued and still have some mucositis but overall feeling good. Bloodwork looking good with two few Nivestym (filgrastim) shots days 3,4 and 10,11.
Hope I can stay on this drug until a promising new treatment comes up for me to change to. Lots of ADC trials out there. Here's a great overview of the ADCs in trial: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6429068/.
Here's a pic of my latest hobby!
Hugs, Susan
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Susan,
Great news! That's a great report.
And wow -- nice little hobby! Bet it's fun in SF.
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So happy for you, Susan! That’s great news. Thanks for the update. Agree that looks like a fun hobby.
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Whoo-Hoo, Susan!!! And how snazzy is that motorcycle?!!
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Susan, So happy for stable!!! Great news and great hobby. My oldest and her hubby are moving to the Bay Area this week for work. We hope to visit them.
I’m trying not to think too much about what is next- I have had some side/liver pain but I really can’t tell what is cancer, what is covid and what is the clinical trial drug. Scan & plan on Feb 15.
Dee
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Wow Susan, good for you! I’m still too nervous to get back on my bicycle after falling off, you’re brave.
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Wow, Susan, you look like from some movie with that bike! Sooooo happy for you! Saulius
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Endoxifen... strange name but anyways: https://www.onclive.com/view/endoxifen-showcases-antitumor-activity-in-breast-cancer-phase-2-trial-halted
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Thanks to all of you for your kind words!
Dee, I would love to meet up if you come to SF.
illimae, I ride very carefully because SF drivers are generally bad (sudden U-turns to snag a hard-to-find parking space, sudden lane changes on the many three- or four-lane one-way streets).and there are a lot of very steep hills. But I still have fun riding like the old lady that I am, picking the slowest, flattest routes. Traded down to a mini moto bike because it is so easy to ride and I don't plan to ride on highways anyway.
BSandra, Thanks for the info. As I continue to look for my next trial, I do come across drugs that have not been proven efficacious relative to existing drugs or have caused serious SEs. Sometimes it takes a lot of time to figure out why the drug hasn't been mentioned in a long time. I suppose pharma companies don't like to make too much noise about halted trials.
I had NKTR-102 in my back pocket as a treatment for brain mets. Went back and looked at it and realized that it is SN38, the same chemo I am getting on Trodelvy. SN38 didn't mean anything to me when I first looked at NKTR-102. Now I know that I have to cross it off my list.
Hugs, Susan
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Susan,
Glad to hear your doing well on Trodelvy. Are you on that because you're low Her2?
What sources do you ladies use to determine if a drug is promising? Can you give me some tips on what to look for?
I'm still on I\L and doing well but I'm always looking at trials for possible next line treatments.
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Thanks Simone! Looks like you're getting a great run on I/L. Hope you will not need to change soon.
I rely on a combination of my MO, Hope Rugo, who is Head of Clinical Trials at UCSF. I also rely on this thread for information on trials outside of UCSF as well as research on possible new treatments thanks to Cure-ious and others. Try to keep on top of news on OncLive, ASCO, SABC. I'm also in a metastatic support group whose members are on different trials and doing research like me. It's like having a part-time job but I am so grateful that I have so many resources. I also find the research to be fascinating so reading papers and clinical trial materials is not a chore. I'm majored in Engineering but worked in Finance for my entire career. If I could do it again, I would choose medical research!
Hugs, Susan
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