Are you currently (or have you been) in a Clinical Trial?
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Wow cure-ious! So, my cancer "hurts" starting at about 9:30pm, when I am starting to get ready for bed.
I mentioned this to my oncologist. I said, "I know you are going to think I am crazy or this is psychosomatic, but my cancer hurts mostly at night and when I am sleeping."
She said, "Cancer pain is always worse at night." She said it as if this was a really well-known and accepted fact.
And I kind of thought, that is interesting, but perhaps it is due to lack of distractions.
But now I am starting to wonder if this is actually a really scientifically relevant symptom. Not sure what to do with it. Personally I am a big big believer in sleep. I suspect rather than sleep deprivation, this conclusion (cancer is more active in sleep) will lead to important understanding that less, but very high quality sleep, is super important in having the body address cancer.
Thanks for sharing! I feel less crazy for "my cancer hurts at night" comment.
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A new clinical trial has started up for those who progress on an AI plus CDK4,6 inhibitor. In this trial, patients will be moved to Fulvestrant and Abemaciclib (Verzenio), however they will take a month off before starting the Verzenio. this is because there have been many indications that even if resistance to CDK4,6i develops, it is quickly reversed when you go off of the drug. Or perhaps they will find resistance is rare and you don't even need the month off. Great that we will get eventually get an answer about that!
https://clinicaltrials.gov/ct2/show/NCT05305924
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And a Phase 3 (already!) trial for Enobosarm with Verzenio for MBC, for secondline only : https://clinicaltrials.gov/ct2/show/NCT05065411
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A new Natural Killer (NK) immunotherapy, with immunotherapy and/or chemo for TNBC, HER2-positive or HER2-low MBC:
https://clinicaltrials.gov/ct2/show/NCT050699350 -
Cure-ious--- I see the only location of the Fulvestrant/Verzenio trial you posted above is in Houston Texas. I was on Ibrance, then changed to a PARP, so I wonder if I could go back to a CDK (Verzenio) with my next progression. That way I would have had a CDK vacation and it may work again. I cannot travel from Illinois to Texas for that trial, but I wonder if my MO, and insurance, would let me try a CDK again. What do you think? Can we try a trial without being enrolled in the trial if the drugs are approved already ie Verzenio and Fulvestrant? I will save that info and ask my MO if it is a possibility when I have progression. I have another scan in August, though I hope I will still be stable.
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Surely you could get Verzenio & Faslodex without a trial, and Verzenio even has some activity on its own, its very attractive to try?
But also, if you want a trial, the ARV-471 PROTAC with Ibrance trial is available in Chicago!! https://clinicaltrials.gov/ct2/show/NCT04072952
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Candy - I was wondering this too. The PARP detour for some of us.... then what? I wonder if they just don't know/haven't planned for it as its only recently the PARPs were approved for MBC. I haven't tried Faslodex yet, though, and I dont know if UK guidelines would allow me to circle back to a CDK4/6 at this time, though I am guessing not. Or at least not yet.
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Hi. I have a biopsy question. I flipped from er positive to triple negative a year ago although we think I’ve always had er positive in my liver (based on my first biopsy) and triple negative or low er positive in my lungs or I am a combo of both now. I have been on estrogen positive treatment for 4.5 years. Last year my lung tumor biopsy was triple negative (tumor was finally big enough to biopsy. Despite the flip, I went on Piqray and it worked for 1 year. I am facing progression now and need to change treatments. I will now be treated for triple negative and I have the pd-1 mutation. My onc wants another tumor biopsy tho. I don’t see the point. I live in Hawaii and don’t have clinical trial options. If I do keytruda with chemo next, it will attack both triple negative and estrogen positive tumors. If I get a biopsy and I am low estrogen positive on that particular tumor, I worry I won’t qualify for keytruda or other immunotherapies and the biopsy will backfire. It’s doubtful that I have any her2 in my tumors. Does anyone see an advantage for me to get another biopsy at this point? I don’t see my oncologists reasoning. Thanks so much! 💕
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Sondra- I agree. With the PARP detour, what is next?? I have not asked my MO yet. 3 scans into Lynparza and I have had #1 scan stable, #2 stable, #3 shrinkage (by millimeters). So I don't know what my MO is planning next for me. I wonder if my insurance would approve going back to a CDK. My MO might say Yes, but insurance is the true decider.
Cure-ious-- Chicago is definitely closer. But that is still a 5 hour drive for me. I live in the south part of Illinois. I have never been in a trial, but if I do someday, it would probably have to be at my current cancer center. Due to travel restrictions-- finances, lack of support system, etc.
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Dear Karpc, I absolutely get the dilemma. I think you should discuss your worries with your MO - is that possible? I know how knowledgeable you are but maybe you and your MO could draw some possible scenarios in this or that case, and maybe he'd convince you, or you would convince him?
Saulius
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Saulius - thanks for your input. Luckily my onc and I had a good chat today and she agreed with me that a biopsy isn’t necessary right now. Thansk
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I don't know where else to post this...so just wondering if you all have heard about this drug.. its mainly for people with Wilsons Disease but it cured..yes cured women with mTNBC.....
https://empirefinancialresearch.com/articles/a-free-markets-failure-that-may-be-costing-lives
also this:
and this:
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On Elacestrant: I was on a similar mechanism (oral SERD) trial drug. I have the ESFR1 mutation. I was on the drug for 15 months. It was by far the lowest symptom profile medication I ever took and was great. I was literally hiking 30 miles a week. I have exceptionally high hopes that Elacestrant will be fantastic for many women with ESFR1. Like the CDKs which gave many of us 2 years. I suspect Elacestrant will give many a year.
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The idea of copper depletion treatment has been around for quite a while. I don’t recall hearing way back that it was specific to triple negative breast cancer, but that news is very exciting, as it might explain why previous trials had poorer results
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Yea I am just wondering if it only works if people have High copper....?? I was tested in 2019 and was "normal" level...
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Just a guess, but I would say it wouldn’t require high copper levels. Normal copper levels can sustain tumor angiogenesis, and low levels are needed to suppress it (and the cancer).
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Nicole - I met with dr. Rosenberg by zoom appointment 4 years ago . He’s a naturopathic doctor in Florida. He recommended the copper treatment depletion therapy for me. At the time I was choosing my alternative treatments and what I could afford and ended up picking other things to try . He said it was best for those with low tumor burden and I was a good candidate at the time but probably not now. I haven’t really followed it since then so I don’t have more insight. It seems like the trials for it weren’t going anywhere although it looks like a promising treatment.
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Kar thanks..I am considering consulting with him or this MO in NH that use to be involved with this trial at MSK...
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karpc,
I was on Keytruda (It didn't work for me) and have never been TN. Once a drug is approved you can get it off-label if your insurance approves it.
Who is your MO in Hawaii? My Mom and SIL both see Dr. Sumida.
Hugs, Susan
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HiSusan - I see Dr. Kagihara. She is a very young and new onc at queens specializing in breast cancer. I’ve only been seeing her since January but I love her. My last onc was past retirement age and got short and snippy at times. It’s strange having such a young onc but she has the passion and drive that I was looking for. - Kar
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Kar,
So happy for you that you found a good doctor at Queens. I was born at Queens! Frankly, the health care in Hawaii scares me. Finding the right doctor is key.
Hugs, Susan
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The trial that I am/was on Tomivosertib with either paclitaxel or Abraxane is done. I signed off the trial papers on Monday, but am still getting Tomivosertib through the drug co, approved by Health Canada & BCCA. It is thought that I could be the only patient left on the drug in Canada. My MO has taken me off Abraxane due to severe neuropathy in my feet. I lasted 15 cycles, but have been off it for 5 weeks now. Funny though, my TM's have dropped by 20% which is odd as they have always been very accurate for me.
I hope Tomivosertib gets full approval soon.
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gg..is Tomivosertib immunotherapy? You are hormone positive right?
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Nicole,
No, I don't believe Tomivosertib is immunotherapy, I am HR/PR+ Her2- still as I had to have 2 liver biopsies to be accepted to the trial.
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Hi gg27
I think that's good news that you can drop the Abraxane and still get tomivosertib? Hopefully it keeps going and going...
Apparently it is an "inhibitor of the kinases MNK1 and MNK2". When the trial first got its funding, this is how tomivosertib was described: https://standuptocancer.ca/the-science/metastatic_...
https://clinicaltrials.gov/ct2/show/NCT04261218
(I paid a little attention to this trial because I was a patient representative for one of the losing applications for the grant competition here in Canada)
Heather
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Posting here for NicoleRod, who found an exciting clinical trial for TNBC:
The link below is to a 2021 Nature Comm paper showing that depletion of copper had a truly great result for TNBC: " data from our phase II clinical trial of TM (tetrathiomolybdate, an oral pill), the TNBC cohort with stage 4 disease showed EFS (event-free survival) of 69% after 2 years; a striking finding as median EFS and OS of stage 4 TNBC patients is less than 8 months and 12 months, respectively, from multiple trials. At 9.4 years followup the EFS was 59%. Side effects seem minimal and they are titrating the dose such that the copper chelator affects cancer cells (with high copper levels) without affecting the function of normal cells. The second link is from the investigators and mentions a larger phase 2 trial in the works for Fall 2022.
https://www.nature.com/articles/s41467-021-27559-z...
https://news.weill.cornell.edu/news/2021/12/reduci...
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Unfortunately I believe one will have to be NED to get into the trial...its says the drug TM will be given after another treatment to keep the cancer from coming back....
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Yep, they say they will test it as adjuvant, suggesting the next trial could exclude metastatic patients, hopefully not...
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It most defintiely will be patients that are NED ...bc I got an email today from Dr. Vahdat and she said she only feels that patients that are NED already can benefit from it...and she is one of the ones running the trial...
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Susaninsf
I saw this, but you probably did as well but thought I’d share just in case. https://www.nih.gov/news-events/news-releases/nih-study-advances-personalized-immunotherapy-metastatic-breast-cancer#:~:text=An%20experimental%20form%20of%20immunotherapy%20that%20uses%20an,Research%2C%20part%20of%20the%20National%20Institutes%20of%20Health.
I’m starting a clinical trial at Mayo not for t-cell although I would very much like to be in a T-cell trial. At any rate, I reached out to Mayo, met with them then they contacted my onc. I guess every place is different. I hope you find a trial for this I’d be interested in hearing details.
All the best,Deb
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