Do you think MBC will be truly chronic in the next 5 years??
Since my diagnosis few months ago, i spent so much times reseaching to find hope & interested in your opions on this topic. Thanks in advance
Comments
-
Yes, I think there are some current treatments that for some women, will produce a long duration of positive results, and I also think we are on the verge of a breakthrough of new treatments that will increase the number of women falling into that category.
0 -
as far as I can see it is a dream. Median survival is what - 2-3years time. It is miles from chronic.
Yes miracles may happen and looks like for those her+ median survival are closer to 5 years. Still nowhere near. In my definition truly chronic are those conditions that you may well live close to normal lifespan with. How long do you think it will take for us to get to future where median lifespan of a mbc patient is let's say 70 years?
0 -
I read so much about exciting research being done, I truly hope that it will. If not in five years at least in the near future.
Herceptin was a huge, life-prolonging breakthrough development for HER2 positive women and I believe there will be other developments having similar impact for all types of BC. Ibrance is also adding years of survival for the people it is indicated for.
My MO, while not calling MBC a chronic disease, is very optimistic in terms of prolonged survival for today’s MBC patients and of new developments in research.
0 -
I can't say for certain if this will happen or not, though I am encouraged when I see drugs, such as Ibrance and Verzenio, that did not exist when I was first dx'ed. I just passed the 8 year mark of living with MBC. I have never had IV chemo and only had rads to a bone met. I have been treated with aromatase inhibitors and for about 2 years was on a bone strengthener, only. I have had no progression since original dx. I only wish we knew why I have done so well with a very low key tx plan.
0 -
My MO told me it was now a chronic disease 3 years ago. I believe her. I've had 3 great years basically just managing a chronic disease. I guess I am a crazy optimist but I think in 5 years in may no longer be a chronic disease because research will find ways in which we can be cured! It seems like they are figuring quite a bit about MBC-what feeds it, what disrupts it. I am hopeful that a cure will be found in time for us. I know I could die tonight-in fact, I almost got hit by a speeding car while I was crossing in an intersection today. But I feel like we lose nothing by being optimistic. If AIDS is practically cured now, why not MBC?
0 -
It hurts to give an honest opinion because I know you want and need to have hope 42young, and it is important for us to keep a positive outlook. I don't want to dash your hopes because they are my hopes too, but it's not even close to chronic now. Yes there are some women who have had good success with current treatments, but they are still the minority. Only 27% of us will live 5 years (per SEER data), current median survival is only 29 months if we were diagnosed at age 50+ (per the NCI), add nine months if you're younger. There has been minor improvement, only months, not years. And the improvements are all just guesses and estimates anyway, because SEER data doesn't capture people who have progressed to MBC, only those who were initially diagnosed Stage IV de novo.
Sometimes we lose sight of the statistics because the people who post here are the lucky ones who are still alive, quite a few are exceptional responders and outliers. It gives us hope. But they are not the norm.
Herceptin was a wonderful breakthrough, but only approximately 20% of us are HER2+ and some, like me, are de novo resistant to it. Some of us get lucky, some of us don't. I hope you are one of the lucky ones 42young!
0 -
I don't want to be a downer. And I want to be proven wrong. But I don't see MBC as a chronic disease now or in the near future. My MO is GREAT but she says Stage 4 is what it is- incurable and terminal eventually. I love hearing the stories of long survival--exbrngrl for example--you go girl. But then there are the ones like Gracie2007 that went on Hospice after 2 YEARS of MBC. Why the difference???? That is the ultimate question. But as long as some are succumbing to this disease so quickly then it is not a chronic disease yet.
42young- Don't lose hope. And don't let me shake your hope. But we have to look at this in reality--my opinion. And I hope science proves me wrong. I don't want to die yet. I want to live to be an old lady. I am 48 years old.
0 -
When we talk about median survival remember this: the number of people who live longer than the median is equal to the number of people who die earlier than the median.
0 -
Yes, half of us will live less than 36 months after Stage IV diagnosis, half of us diagnosed at age 50+ will live less than 29 months. It's sobering. We still have a very long way to go.
Stage IV de novo IBC is even worse, with an all-age median of 22 months.
0 -
Thanks for all the comments so far. It's interesting to hear from both sides. I hope to hear more from others.
0 -
Although I would like to remain optimistic, and I am in many respects, we are nowhere close to mbc being chronic for a majority of stage IV women. I say this as an outlier who wishes she knew why she’s done so well.
0 -
I love to think about it!
About 15 years ago (time flies) I served on the board of external scientific advisors for the NIH, the panel of professors that reviews the research of the National Cancer Institute campus in Bethesda. I remember it particularly well because my time there started right after my chemo ended, so I had to wear my wig when heading out there a couple times a year.. Anyway, the NCI "motto" they had at that time, was that they had a 15-year plan to "end pain, suffering and death from cancer" .something like that. These guys have to work with Congress and boost support from the senators and congress critters for their research, so they have to push the envelope, and maybe its better than "fighting the War on Cancer", but I was shocked to hear them say it because it was so clearly beyond fantasyland to imagine that it was true or even close. Working at the forefront of the research, they knew great stuff was coming along, but still- you NEVER never never give timelines. That motto ended when some senator (I think it was Orrin Hatch) asked the NCI director ("How much would it cost to get rid of it all in five years?!").
Research does not advance linearly with time, there are big breakthroughs followed by troughs where nothing much changes. Factor in that the research is way ahead of the clinical trials, which take forever and are so risk-adverse (because they are so expensive and take so long) that they don't do the big combos you might like to see. And even if the big combos are being tested, then its not on every type of cancer. etc.
From my perspective, I don't know if cancer will be chronic in five years, but for sure in five years there will be drugs or trials way different from what we have today- plus, if MBC is to become a chronic condition in ten years then it would already be in clinical trials within the next five.
And because I am inherently a crazy optimist, I also know that a freaking cure could pop up at any time. There are an awful lot of irons in the fire at this point.
0 -
Like Cure-ious noted, it is not a linear path to becoming a true chronic disease. That is good news and bad news. True breakthroughs, when they happen, can happen suddenly - think HIV cocktails, cervical cancer (HPV) vaccine, or even penicillin going way back, although of course, many years of groundwork were laid before these breakthroughs happened even if it was behind the scenes. Effort does not always equate to success in the world of cancer treatments and this is all pretty much a crap shoot. There is lots of science involved but also dumb luck, happenstance, politics, clinical trial budgets, self-ambition of the research leaders, financial profitability metrics of the drug manufacturers and many other non-scientific factors.
What keeps me hopeful is the case of Judy Perkins who has been deemed as "cured" in front of Congress after undergoing the TIL trial at NCI. She tore through about 12 treatments for metastatic BC in 2 years after diagnosis and none really worked. She was set for hospice and decided to do the TIL trial. Her MO thought she was crazy at the time. Well, it worked. Completely. Here she is, NED and off treatment for 4ish or so years now. When she started the trial she had significant liver involvement. The NCI has only replicated that success in a few other (non-BC) cancer patients in the TIL trial. However, it represents a kernel of a miracle.
In the meantime, survival time seems to be inching longer and longer each year with new treatment advances. We can all hope that squeaking out that extra time with each new treatment advance that piggy backs on those from the year before, and the year before that, etc. can bridge us to the time when there is a major breakthrough or miracle.
0 -
42young, I think median survival times will get longer and longer, extrapolating just from the trend I've seen here in BCO, not SEER data. When I first started posting, I didn't see too many others like me, NED or stable and surviving longer than the median. Now we have a Stage IV NED thread and an 8 year survivor thread! This is progress. We also have oligomets threads, which is an acknowledgment that some people can extend their lives drastically via multimodal approaches (exbrnxgirl and me, for example). The same approach may not work for someone with a higher tumor burden. Not all Stage IV is the same, not all Stage IV de novo is the same. There can be a cure for some, sadly not for others, it's a "chronic" disease for some and not for others. 12 years out from my de novo bone mets diagnosis, I may be cured, or may have become a "chronic" case, with long-term dormant cancer cells.
https://www.sciencedaily.com/releases/2019/05/1905...
The above article, "Bone cells suppress cancer metastasis," may suggest there are different stages to Stage IV bone mets.
0 -
Dear All, what a cool thread... well, I am sure we can make it chronic very quickly but for that we have to change the system. I know at the moment several combinations that cure mice. Yes, literally... cure, as they live NED same time as other healthy mice. So why the hell we have to wait for some stupid phase1-2-3 clinical trials that cost billions and last 10 years??? If I want it, if I am dying, if I have nothing to loose, if I sign that I will never complain, why not let try drugs on me? I am sure break-through would come in a year because there would be lines of people for every promising drug combination now, this second, and in a few weeks we'd know if it works or not... Sure, one might argue that I am unrealistic (dosing, SE, etc.) but then why if I die anyway? Why then people conduct "their clinical trials" by trying everything and anything to survive, and some of these things work for some, there are thousands of examples. We have to change the system. If you know, HIV people blocked the Capitol hill for several days to get their promising drug after phase 1/2 clinical trial, and that was it... today we almost do not hear about HIV anymore.
0 -
interesting and thought provoking topic;I think the challenge with cancer is that it goes back to it being a heterogeneous disease.
I feel like our treatments are never truly a guarantee my MO cannot definitely tell me or guarantee me anything in which ever course of treatment I take.
They can tell me about what the intention of the treatment is and what they are hoping it will do but then again it’s a whole different story how I respond to it.
My mom has had diabetes for 20 years and she’s been taking metformin and insulin injections and all has been well so far,if only we can atleast start getting that many years ATLEAST with MBC.
I live in South Africa where people are actually living with HIV as a true chronic disease,so long as people take ARVs and they’ve don’t default they live normal lives with little to no side effects
0 -
Chronic? No, that would mean living reasonably well for another 30 years or so with MBC but I am encouraged by the treatment options I have ahead of me and those just on the horizon. This is a constant balance between reality and optimism.
0 -
I truly think time will tell as new treatments and advances come along. May we be lucky enough to live long enough to see it. I've seen quite a few women here defying the median and the odds, giving me hope personally, that it can be a chronic disease for some. At least for now. I know 2 women 10 years out with MBC and one is literally TN, the other was like me with a solitary liver met. Both are doing amazing and living normal lives. The one with the liver met was one of the first to get Herceptin where I live. It was still in trials when she was Dx'd. She's doing amazingly well, with no new mets , no progression. The woman with TN , she has had zero treatment since chemo knocked out her mets in 2009. No progression, nothing new, just nothing. I don't want to have the pessimistic stance that it it'll never be curable. It is unfortunate that there are women who fall within the stats and succumb so quickly. It truly breaks my heart, and it also scares me bc I just don't know how it'll turn out for me. I'm still a newbie at one year out but currently an outlier in my drs eyes. Current plan is curative after my treatment (palliative) which apparently had 8% chance of doing anything , worked. They've opened their minds to believe that perhaps some women in certain circumstances can be cured, and I think that's progress in of itself .
0 -
Thanks Ladies for your honest opinions. I hope to hear more!!
0 -
Short answer: No, I don't think mbc will truly be chronic in the next 5 years.
One thing I learned recently is that even tho there are exciting medicines on the horizon, they still have some bad side effects and do not work for everyone. So the good news must be tempered with the truth. Like illimae says, optimism with reality.
And it takes years and years and years of research and trials for new forms of treatment to become available.
Its a shame there isn't more uniform agreement among the medical field about what's considered chronic. Many iof them already frame mbc that way.
And women with lesser stage bc are considered “cured" after five years without a reoccurrence. Five years? I mean, who with diabetes would celebrate if the doctor said, “hey the good news is when it's caught early many people will live five years or more!"
0 -
Something I always like to mention is that, in addition to the development of Herceptin for Her2+ bc, the other less touted breakthrough was the use of aromatase inhibitors for er+ breast cancer, introduced in the 1990s. Dr. Angela M. Hartley Brodie discovered and developed this new type of drug and against a lot of opposition, was instrumental in finally getting it to bc patients. The opposition arose from those wanting medicine that killed cancer cells, but her concept was starving the cells.For this and many other reasons, she was a pioneer in her field.
Her work is another reason women with er+ mbc are living longer.
0 -
Unfortunately, there are about 20% of women who cannot tolerate the AI's in any form, including myself. I dread when my combo stops working because I have no where to go. Hopefully this treatment lasts a very long time.
0 -
movingsoccermom - what happens to you with AIs
0 -
In response to BSandra and the mention of AIDS advocacy, I recently read of an organization called MetUp that plans to do more militant advocacy for Stage IV breast cancer, modeled after what ACT UP did for AIDS in the 90s. Maybe this IS what's needed to make changes for the better, for MBC treatment and possible cure. I think we were neglected in the past in terms of research dollars but it has improved some.
This is their website, which I have not dug into too deeply yet. http://www.metup.org
PS - Divine, thanks for sharing about the development of AI , I was unaware of this. Cool that a woman researcher is responsible.
0 -
Hi LoveFromPhilly. Within 2 weeks, I gained 15 pounds while decreasing food intake, had extreme irritability and mood swings, vertigo-increasing with time on drug ( I had to pull over while driving), severe hip pain (could not sit, stand or sleep on that side), 3 day headache (pounding, close your eyes, barely breathe pain) unrelieved by prescription NSAIDS and Tylenol combined. The headache went away after 6 days total, 4 after I quit the AI. My oncotype Dx was 3. Without AI's that should have put my recurrence risk at 6. I am unwilling to live with those side effects, even now, and would not go back and change my decision. With hindsight, I would not even have tried AI's. No one in my extended family has been able to take them. I have 3 Aunts who had breast cancer, 1 never tried, 1 quit Tamoxifen early, 1 took Tamoxifen with a reduced dose and ended up with blood clots and almost lost her feet. My Mom has already had a stroke, so I won't consider Tamoxifen either.
Starving cancer cells of hormones would be a fabulous idea if you only starved the cancer cells. Unfortunately, current AI's starve the BODY of estrogen, and some bodies won't tolerate that starvation, including mine. I am very happy that these drugs work for many people. I am frustrated that there are not choices for folks like me, for whom those drugs are not an option.
I am currently on Faslodex/Ibrance, which I am tolerating much better, but still with night sweats, hot flashes, dizziness managed with a lot of salt, spaciness (losing train of thought), and fatigue (which I have had for 3 years, so not sure I can blame it all on the new medication). My consulting oncologist at Johns Hopkins did feel that MBC would become a chronic condition for me, based, ironically, on my Oncotype score. That score indicated in her words "dumb, lazy cancer cells," which would be easily defeated by this drug combination, and would be unlikely to develop resistance because they are dumb and lazy. I have much hope. This would follow more closely the experience of my family, since no one else has had a recurrence, let alone been Stage 4.
0 -
Nope, not for me. I do hope it will be for some patients. Mine has been crisis after crisis. TX failure after TX failure. Now on fourth line with IV Gem/Carb. Nothing chronic about this TX. My tumors are resistant, stubborn and uncontrollable right now. Plus, they are in life threatening organs. There is nothing chronic about my DX of MBC, nothing. Liver monsters don't stay chronic, they kill.💞
0 -
Thanks again for all the comments. From reading your opinions, MBC is different to everyone; for some it can be controlled & live for years, while it can be out of control quickly for some. However, with all the new advancement in research, the overall survival has been improved & will continue in the next few years. To me i'm optimistic that it can be chronic some day, may not be in my lifetime, but it can happen, just the matter of time. In the mean time, i would hope for the best & prepare for the worst. Hope the best for all of us!!
0 -
One difficulty here is that MBC is not one disease. It's at least 3 diseases and probably more.
Over the last 20 years different strides have been made for different forms. ER+ had it's day with aromatase inhibitors and SERDs. Then HER+ ladies overtook everyone with the HER2+ therapies. Triple negative women were left behind but may now be catching up because immunotherapy seems to work for some of them.
Each group has made strides in length of survival at different times.
Some women already treat their cancers as chronic disease. Most don't get to. But who knows why my cancer mutated to become resistant to Faslodex and Tina's doesn't? If scientists could figure that out we'd be a lot closer. However and unfortunately 5 years is too short a time frame. 20 years maybe. I won't be alive to see it. But some of you might!
0 -
My MO believes that for some women, it will be a chronic condition. She has at least a few patients she considers potentially cured (though she says she hesitates to use that word). I’m still on my first treatment and doing well. Mets have either shrunk to almost nothing, disappeared or are sclerotic. I’m taking Abemaciclib (150 mg 2xs a day), Faslodex and a Pi3k inhibitor trial drug. It’s been two years and almost seven months. I plan to be around much longer than a few more years
0 -
Welcome back, Maizie!!!
Yes, we are already there, just need to bring along more of us...
0
