Stage IV: How do you define curative intent?
Comments
-
I can't agree that the treatment is worse than the cancer. Early on, I asked the question - already really knowing the answer - of what would happen if I didn't start treatment? More than likely, I wouldn't be here today. Instead, I'm living my life, albeit I've had to make some changes, but I'm enjoying my time, my husband and family. I'm optimistically hoping for several years. I don't think that's morbid, or overly dramatic, it just is. I'm good until I'm not good. I'll do the treatment until the benefit outweighs the QOL 'cost'. I can only hope I'll recognize when that is.
0 -
Divine, from Moth's post (thanks, Moth!) I saw that Judy Perkins did an interview with Our MBC Life.
I had read news stories on Judy Perkins before, but this interview is a deeper dive. Her story is amazing. She had DCIS in 2003, a metastatic recurrence in 2013, and then after going through several standard treatments where nothing was working, she started dabbling in a couple clinical trials. The clinical trial that worked was an immunotherapy trial using tumor infiltrating lymphocytes (TILs). It worked. In 2015 she became the first person with MBC that doctors consider to be cured. She is no longer on any treatment.
Here is the link: https://www.ourmbclife.org/episodes/judyperkins
0 -
Thanks, buttons, I will check the article out!
What I’d like to know is, if the immunotherapy trial she did was so effective that she’s considered cancer free at this time, when is this treatment going to be available for the rest of us? When will it be a more widespread approach for women with mbc?
0 -
Lauriesh, we are dancing with Lt NED!! (I changed my signature to reflect that.) I also had a 7 year old to motivate me to keep angling for him.
It's been a 13-year song for me. I've been off meds since 1.5 years. Am dealing with physiotherapist appointments and other doctor's appointments because I am now pushing 64. I do feel the physical strain of having been in an incurable limbo for almost 14 years, but all worth it!
Thanks, moth for the link to ourmbclife.
0 -
lauriesh,
Congrats and good to “see” you! I readily admit that despite my NEAD status I don’t know if I feel secure enough to go off all treatment. The thing is that no one knows if it’s the AI I take or something else that has kept me NEAD. Take good care.
0 -
I always wondered that too MrsM - but I figured it was so experimental and a) just about killed her and b) actually did kill some of the other participants (didn't it?) that the approach isn't ready for prime time yet or there are other similar approaches in the pipeline that are more promising.
0 -
Divine and Sondra,
Both of your comments sent me directly to my “hang up” about cure or curative intent for stage IV. Yes, there are a few, very few, women who have been declared cured at stage IV but unless it can be consistently duplicated is it really a cure or just some fluke that can’t be explained. I often think of myself that way. I did not have aggressive tx and curative intent was not a phrase used when I was dx’ed. I have followed no specific diets nor done any other protocols or regimens. For whatever reason, my body seems to be resisting but why that is is unknown. It really seems like a fluke, not a cure.
0 -
I wonder want others think of this scenario, a woman is diagnosed with MBC aged 63, 10 years after she had her first breast cancer she has various targeted therapy, immunotherapies, and chemotherapies she is now she is 82 and still alive and on treatment, the side effects of treatment have had all sort of consequences for her health she has been putting up this and the scan anxiety all those years, she then dies of natural causes and general ill health cause in most part by her treatments, so she died with it and not of it, maybe she just got on with it because it was keeping her alive, meanwhile, her 79-year-old sister is heading off on a hiking trip having never had a days illness in her life
. That is why to me there is a big difference between long-term NED and an actual cure unless they come up with side-effect-free treatments.0 -
As I understand it, both Judy Perkins and Barbara Bigelow almost died from their treatments (TIL, and pembrolizumab+eribulin respectively) and it didn't work for anyone else in their trials. So these are right up there with the rest of the outliers' stories. We don't know why it worked, how it worked, or how to make it work for anyone else.
Until it's available and effective for a large group of people, we're nowhere near calling treatments curative.
TIL and CAR-T trials are continuing. Pembro is being used but is not the miracle drug for most. It was probably not the pembro that worked for Barbara - she had a hyper immune system response to the immunotherapy which landed her in the ICU (sort of like the immune system storms which affect some patients with viral diseases like covid). The out of control immune system almost killed her but in the process also killed the cancer. She needed a lot of rehab, kidney dialysis etc after. It was a very close call.
Btw, there was a case report of a Hodgkin lymphoma patient in Europe who got a bad case of covid and also suffered an immune system storm. Survived the covid and cancer's has retreated.
I think that's why everyone is saying the key to solving this problem is the immune system - either ramping up the pt's immune system or disrupting the cancer's shielding from the immune system.
0 -
I don’t know a lot about immunotherapy but I do know you have to have certain biomarkers to even be considered for it. So it definitely won’t work for everyone
From the state of treatment right now, it looks to me like there won’t be *A* cure, but perhaps different cures for different subtypes of breast cancer.
0 -
Outstanding link, Moth! Never heard of Dr Pluard but his recap was the best I've ever heard following any of these meetings, I'd love it if we could just have his summaries from all of the trials, he assumes a certain level of knowledge in his audience, which allows for more specific conclusions than we get with most of these kinds of presentations.
Among his takeaways, 1) a good response to CDK4,6 inhibition in firstline justifies continuing it in subsequent endocrine therapies (hopefully all physicians and insurance companies eventually get that memo), 2) after progression on standard endocrine therapy one should expect to move into clinical trials for SERDs. SERCAs, and/or Enobosarm, 3) tumor infiltration is a more useful biomarker than PDL1 expression for response to immunotherapy, and 4) any long-term survival strategy depends on mobilizing and directing the immune system to attack the tumor.
0 -
Olma, the current immunotherapy treatments like pembrolizumab or atezolizumab require certain markers because they're targetting specific ligands on the cell (though the designation of pembro for high TMB signfies to me it's more liberal about where it attaches - it just needs lots of opitions, like you get with a high TMB). CAR-T, CAR-M or TIL doesn't require any markers.
Cancer is a really a disease of evading immunity. Our T cells and NK cells should have killed these bastards right off when there was just one. No special markers needed. That's what bodies do every day because cells having a genetic mutation is something that happens a lot - every time you copy there's a risk for error. Sometimes the errors are not signficant but either way, wonky cells get targetted for destruction <--- in a normal immune system.
0 -
Thanks for that explanation moth! Perhaps one reason Herceptin works so well is that it also has something of an immune effect - in addition to the blocking of HER2 receptors, it also makes the cancer cells “visible” to the immune system so they can be destroyed “naturally”.
Buttonsmachine, thanks for that link to the Judy Perkins interview, very good listen.She also clarified that no specific biomarkers were needed on the trial she participated in.
PS getting a kick out of “Lieutenant NED”. If I can’t have General Cure, I’m willing to settle for Lt. NED. He’s not bad himself. : )
0 -
I'm not familiar with Barbara Bigelow, but in the Judy Perkins trial they did have success with a number of other patients, just not breast cancer patients. I still think that's a welcome development, and hopefully there will be more breast cancer patients like Judy Perkins in the years to come.
There's a very small, breast cancer specific T-cell trial in Seattle. Here's an excerpt from a press release which can be found here: "Specht stressed this form of treatment is "completely different" from other forms of treatment but said that doesn't necessarily mean there won't be side effects... But a single infusion of MUC1* CAR T cells may persist for a long period of time....The study's primary objective at this point is safety...Once the T-cell dose is determined, additional patients will be enrolled.
Judy Perkins said that her engineered T-cells are still detectable in her blood, even years later. That is why engineered T-cells have the possibility to offer a real, durable cure.
From MD Anderson: "The major advantage is that CAR T-cell therapy is a single infusion that usually requires at the most two weeks of inpatient care, and then it's done. In contrast, newly diagnosed non-Hodgkin's lymphoma and childhood leukemia patients usually need at least six months or more of chemotherapy. CAR T-cell therapy is also a living drug, and its benefits can last for many years. Since the cells can persist in the body long-term, they will still recognize and attack cancer cells if and when there's a relapse."
T-cell therapy still has a ways to go in solid tumors, like breast cancer. But as we see with Judy Perkins, it is possible. Doctors are also getting better at managing cytokine release syndrome, and the other dangerous immune responses too. Who knows, maybe a different "cure" or "cures" will pan out, but I think this is one to keep an eye on.
0 -
If anyone wants to read more about CAR-T, this is an excellent piece; it's more about heme cancers but highlights the problem with this therapy https://undark.org/2019/10/23/cart-t-behind-scenes... It's from 2019 so yes, the advancements in dealing with the immune over reactions are already being seen but still...
There's also a new article from June 2021 in Cell magazine specifically about solid tumors. "CAR T Cell Therapy for Solid Tumors:
Bright Future or Dark Reality?" full text is on scihub (just enter the DOI) if you don't have a subscription to Cell (lol & who does...) https://www.cell.com/molecular-therapy-family/mole...
0 -
Thank you for bringing Dr. Pluard's summaries to our attention, moth!
0 -
Well, I think curative intent sounds very pleasant, that they will try even if they do not succeed.
I was told I was "incurable" November 2014 with recurrence to my skin, chest muscles, chest wall... And then two months later went NED. That lasted 6 years on nothing but Arimidex, so I certainly believed I was cured.
I'm holding on for NED again, so I can enjoy "cured" for a long time.
0 -
I was just reading an article on the Memorial Sloan Kettering Cancer Center web site, about how cancer metastasizes, and it says, "The goal of MSK researchers is to turn metastatic cancer into a manageable chronic condition and, perhaps one day, uproot cancer for good."
0 -
Interesting. It also talks about Paget's seed and soil theory of metastasis and the role of shear stress forces in killing cancer cells and not allowing most cells to seed.
I quickly googled and found a study under exercise conditions with this conclusion among others:
High shear stress caused necrosis in over 90% of circulating tumor cells within the first 4 h of circulation. More importantly, the CTCs that survived the first 4 h-circulation, underwent apoptosis during 16–24 h of post-circulation incubation.
Many years ago I had read research on how cancer cells bump into blood vessel walls and die. I decided then to intensify my exercise routine. Judy Perkins herself embarked on a hiking trip to Nepal while on chemo after her mets diagnosis, as well as rafting, skiing, etc. It's probably safe to say she was fitter than most Stage IV people including me when she started treatment.
Terminal Breast Cancer Patient Opens Up About Life-Saving Immunotherapy (womenshealthmag.com)
Unfortunately primary and other (metastatic) tumors probably (my guess) aren't really affected by shear stress given that they're stationary. But these forces can do a number on circulating tumor cells, killing them in the bloodstream and preventing them taking hold if they do seed (my non-expert understanding). Again this is not a cure, because some cells just are too sneaky and go quiescent or something. Still worth moving our bodies everyday to enhance the cell killing. I'm even wondering if riding up and down the elevator 40 stories high, or being jostled in an off-road vehicle or white water rafting for hours will help. Not that any of these things are easily accessible. Rebounding, anyone?
0 -
It would be interesting to hear from those who have been on various treatments for years and not just hormone therapy, did years on treatment have an effect on the quality of your life? I am wondering this because I truly believe prolonged control even lifelong control is emerging, so the quality of life and managing side effects could be a big issue. I am sure there are some who will be cured but currently a general cure I am not so sure of.
0 -
There has been a lot of advancement in technology, but we humans are still banging on things with clubs, mostly each other. They can call it whatever they want, or should I say whatever the insurance
company wants to hear, but you can't call something cured if you don't even know what causes it to begin with. Curative intent means deciding to continue beating it hard with clubs.Another definition of cure has to do with making pickles. I feel pickled.
0 -
Side effects and deterioration of QOL is definitely a barrier to MBC becoming a “chronic illness” comparable to others. If you have bone mets and are on bone strengthening meds, you risk fractures and ONJ. Years of hormone therapy has side effects too, see my post on prediabetes in the hormone therapy forum.
For HER2+ people, lots of us get years on the first line HER2 drugs and with less side effects than regular chemo but the drugs still carry the risk of heart failure, lung issues and other things - and second line & beyond is more like regular chemo because those drugs are ADCs which contain a chemo drug or are paired with xeloda , etc
I can’t imagine living for ten years on say, Taxol, and I don’t know if anyone actually does.
0 -
sunnidays,
I have been on tx for 10 years but only AI’s. I would venture to guess that 10 years on chemo based tx does indeed effect QOL but AI’s do too. Why would you exclude AI’s as part of lifelong control of bc?
MKestrel,
10 years ago when I first started tx, the phrase curative intent was not used. Though giving no time limit, my ro simply said , “You’re going to live for a very long time.” There was no beating hard with clubs nor push toward aggressive tx. I swallow a tiny pill every night and had rads to the bone met. That’s it and I’m still here so again I am left baffledby “curative intent”. We don’t know what causes bc and if someone is “cured” why doesn’t that cure work for other stage IV patients whose disease is similar?
I can’t tell if I’m more frustrated by the imprecision of the language used with stage IV or the medical pasta throw. I suspect it’s both.
0 -
I think I understand Sunnidays perspective. There is, of course, a wide range of hormone treatments but I spent 8 years on Tamoxifen and then an AI in the adjuvant setting. The impact to my QOL was negligible beyond some extra aches and pains. That can’t be said for any of the treatments I have been on since my MBC diagnosis. While most have been tolerable with some dose adjustment they have each packed a wallop in their own ways and many have a significant impact over the long term which challenges the notion of treating a chronic illness.
I’m currently off treatment (although there are signs that things are already going sideways with this approach) as my MO was concerned about toxicity to my marrow if I stayed on Xeloda long term. Eventually these treatments can kill us just as easily as the disease
0 -
sadieservant,
I’m glad that tamoxifen and the AI’s have had negligible se’s for you. My achy and sometimes painful joints are controlled by Aleve (naproxen sodium) and cannabis so I am getting off relatively lightly. But there are many people who do find these drugs intolerable and quit taking them. I do think years and years of chemo clearly take a toll on a person but if we are looking at curative intent, let’s not exclude the AI’s or tamoxifen.
Thank you all for your insights and observations on curative intent. I still find the term baffling but sort of understand what some might mean by this.
0 -
Just to add...Tamoxifen also carries a risk of uterine cancer (or some other reproductive cancer, Im pretty sure it’s uterine sarcoma). Now, only a small portion of all tamoxifen users will actually experience that - but, we are ALL taking big risks and hoping for mostly medium size rewards.
0 -
I did not mean there are no side effects from hormone therapy, I got bone pain and pains in my feet from tamoxifen it also affected my sex drive so yeah everything has some side effects, our hormones are delicately balanced. I know all the big money for the drug companies is new cancer drugs but imagine if they researched making CDK4/6 inhibitors work more efficiently those with MBC would be on it for their whole life. The pharmaceutical companies would make billions.
0 -
I posted this link in Breaking Research but thought it pertained to this discussion too. Interesting interview with two doctors who study thetreatment of oligometastatic patients with curative intent. Although they use the term curative intent to describe treating oligo mets pts the same as early stage, they do not like to say people with MBC are cured. It's a few minutes short of an hour but worth watching if this interests you.
0 -
olma61, thanks for posting this, really interesting discussion. I am not oligo as I had more than 4 distant lymph nodes with cancer at stage iv dx.
0 -
Hi everyone,
This MBC Life just posted a new podcast called "A Road to a Cure," with an interview with Dr. Heather Parsons and Dr. Nancy Lin of Dana-Farber. They just received funding for a clinical trial to study HER2+ MBC patients who have been NED for at least 3 years. They will recruit for women who want to stop treatment and go on intensive monitoring for a year using scans and blood tests for residual disease. Below are some interesting links:
Our MBC Life - Road to a Cure (They start talking about the trial 15 minutes in) - https://www.ourmbclife.org/episodes/rtac-lin-parso...
STOP-HER2 Clinical Trial Description - https://taggs.hhs.gov/Detail/AwardDetail?arg_Award...
sj
0
