Do read this encouraging article

[Hazelgreen]

consumerreports.org/breast-...

"But this new research tells a more optimistic story. It reveals that the number of women in the U.S. living with metastatic breast cancer is growing and that survival rates are improving, according to the new study, published today in the journal Cancer Epidemiology, Biomarkers & Prevention.

When researchers analyzed a registry of government data that tracks cancer cases around the country, they found that the five-year survival rate of these women younger than 50 doubled from 18 percent between 1992 and 1994 to 36 percent between 2005 and 2012. Median survival times also increased, from 22 months to almost 39 months for women younger than 50, and from 19 months to almost 30 months for women diagnosed between ages 50 and 64.

“We found that a meaningful number of women actually lived many years after an initial diagnosis of metastatic breast cancer—more than 11 percent of women under age 64 survived at least a decade,” says study author Angela Mariotto, Ph.D., chief of the Data Analytics Branch of the Division of Cancer Control and Population Sciences at the NCI."

[TammyCross]

Nice of you to post that -- since we are over 64! All the good news seems to be for younger women, younger at diagnosis. Then maybe they live to be our age:}

[Hazelgreen in reply to TammyCross]

I'll try to find the original article that Consumer Reports is commenting on. Perhaps, the original article noted that a few of us oldies are also living long. You and I know of people on this site who have been dealing with mbc for 18 years or more.... 😍😍

[TammyCross in reply to Hazelgreen]

I think I have noticed that the long termers have bone mets only. Am I right?

[Hidden in reply to TammyCross]

Correct. The prognosis for bone only mets is better than for those with visceral organ (lungs, liver, brain etc) involvement.

[TammyCross in reply to Hidden]

Would that include non-organs? Or am I misunderstanding "organs"? Do you mean anywhere other than bones, or specifically major organs. I had big tumor in mediastinem, and now have small one in paratrachea.

[Hidden in reply to TammyCross]

Visceral organs refers to the major organs e.g lung, liver, brain, heart etc. Sorry I haven’t seen any data related to prognosis for your metastatic sites.

[TammyCross in reply to Hidden]

No, that is what I wanted to know -- whether you were being specific to major organs or just starting there with a longer list.

[Debbigbang in reply to TammyCross]

Yup and I have the liver one at 58 yrs old. So yes, this is my fear.

[daniellebrooks13 in reply to TammyCross]

Well, I've hung around metastatically for 15 years. And I've had breast cancer in the lungs, brachial plexis, brain and most recently spine. We're concentrating on the spine mets right now. The other spots seem to be stable or gone.

[Hazelgreen in reply to daniellebrooks13]

Wow! Your response to treatment is very impressive. Congratulations! The order in which your organs/bones developed cancer seems interesting. It seems many people start off with bone mets which then spread outward. I'd be interested to know which treatments you've experienced.

Hugs,

Cindy

[TammyCross in reply to daniellebrooks13]

Good for you! Good to hear. Seems quite amazing.

They are gone? Sandy would tell us that bone mets are never gone, but for me, they seem to have resolved most easily, on either of the two treatments I have been on. So hopeful you will get good results with this one, too.

[Hazelgreen in reply to TammyCross]

I hadn't realized that the Consumer Reports article was dated 2017. However, the original article is available online in its entirety:

cebp.aacrjournals.org/conte...

If I'm reading one of the graphs correctly, it looks like 20% of those in our age group (65-74) on diagnosis live another 8 years on average.

Check it out, and let me know what you think.

Hugs,

Cindy

[TammyCross in reply to Hazelgreen]

Yes, that is what it says, 20%, 1 in five. The news for younger women was improved over the past, but not terrific, with less than a third surviving more than five years.

The caveat I see is that the latest data they have are from 2013. Since it was written in 2017 (or published then, so analyses probably done sooner), they couldn't get 10 year survival rate for the later samples (e.g. 2012 to 2022). The latest 10 year data they could get was from women diagnosed in 2003. I assume there was progress in treatment between 2003 and 2013. In fact, looking at the 5 year survival rate in 2000-2004 compared to 2005 to 20012 is where they get the jump in survival for the younger group, up to 36%. For 65 to 74 yo, five year survival went from 20% to 25%, and for 75 to 84, it went from 15% to 18% -- pretty modest improvement.

The most reassuring to me is that the treatments I have been on were not available in 2012, their cut off for survival data -- that is, they were looking at people diagnosed in 2007 at the latest for 5 year survival, but the table I am looking at ends in 2005, so latest diagnosis was 2000. I think I am getting that right. Ibrance was approved in 2015, and the oral SERD I am on now is not yet approved. So this study doesn't even take into account advances in treatment in the past 10 years. Right?

[TammyCross in reply to Hazelgreen]

What about this? Gedatolisib - being fast tracked for approval. Median PFS (progression free surviva) was 31 months, pretty good compared to other meds.

I must have missed discussion of this. I know our research monitors on this site are keeping up with the research.

[Hazelgreen in reply to TammyCross]

According to CancerNetwork, January 28, 2022,

"Gedatolisib has earned a fast track designation from the FDA as a treatment for patients with hormone receptor (HR)–positive/HER2-negative metastatic breast cancer who have progressed on CDK4/6 therapy and endocrine therapy, according to a press release from Celcuity Inc.

The company expects to receive feedback on the phase 3 clinical trial design during the first quarter of 2022. The company also has plans to initiate 2 phase 2 trials to assess the drug in patients who have been selected using the CELsignia PI3K pathway test."

Where did you see the mention of a PFS of 31 months??

[LadyKatarina in reply to Hazelgreen]

Isn't Gedatolisib the drug that targets the PI3K/mTOR pathway? Don't you have to have the PI3K gene for it to be effective?

[Hazelgreen in reply to LadyKatarina]

Hi Kay,I think your information is correct, but I don't know if the P13K gene mutation has to be implicated for the drug to be used.

My oncologist is happy that I have the P13K mutation because there is a targeted drug for it if the ribociclib I'm currently taking fails. Apparently, PIQRAY is for patients with HR+/HER2- advanced or metastatic breast cancer with a PIK3CA mutation. It has serious side effects so I'm not so happy about its possibility.

According to Medline Plus Genetics, "Cancer-associated PIK3CA gene mutations result in production of an altered p110α subunit that allows PI3K to signal without regulation. The increased signaling can contribute to an uncontrolled proliferation of cells, leading to the development of cancer".

The limitations of the various cancer drugs are seldom mentioned.

[LadyKatarina in reply to Hazelgreen]

Interesting--so maybe the new drug just stops the pathway--and the PIK3CA gene is irrelevant? I don't know how often that gene shows up--what percent. Yes--some in my Metavivor support group here in Mpls have tried Piqray--one got horrible high glucoses levels--the other it did not do anything and she quickly moved on to something else. Always new things! Thanks for the posts!

[TammyCross in reply to Hazelgreen]

The first part of what you said is what I read. I read a brief statement from the doc who developed it.

[Lulu4545 in reply to Hazelgreen]

Hi,I saw the 31 months PFS in this article but in first line. Lots of other information on new drugs...

targetedonc.com/view/novel-...

Lovexxx

Lucie

[Hazelgreen in reply to Lulu4545]

Thanks once again, Lucie! This looks to be an excellent review article regarding these new drugs!

[Lulu4545]

Hello everyone,Here's the most hopeful and recent article I found.

ascopost.com/news/november-...

Lovexxx

Lucie

[TammyCross in reply to Lulu4545]

Hmm, so 2021 is no better than 2019, when I was diagnosed and told average survival is 5 years. Not surprising, but also not better news.

[Lulu4545 in reply to TammyCross]

Hi TammyCross,I was diagnosed and just told my life expectancy could be calculated in years which in it self didn't mean very much to me. Ok I wasn't going to die within the year, but I was 48, healthy and had no symptoms of any kind. It was all kind of completely unreal.

At the time I told myself that I had at least two years. Having young children - 11 and 13 - this was just awful - still a nightmare today. Leaving my kids when they're just teenagers...

Then I saw this 5 year statistic and somehow my kids would be 16 and 18. It's kind of not as bad. Clearly it's still not enough and very disapointing, but, well, not as bad.

Also the article says they hope to double the life expectancy by 2025. Being diagnosed in 2020, I should still be there in 2025 and benefit from this and maybe make it to 2030 - kids will be young adults 21 and 23.

Yet I have to think of my lovely husband, I really want him to find a nice woman after me. He looks great and really young. I'm afraid that it will be more difficult for him to start a new life at 58 or maybe easier because the kids will be leaving home.

Planning the future is kind of tough with this disease.

Lovexxx

Lucie

[Hazelgreen in reply to Lulu4545]

Thanks, Lucie! I like the mandate for this international conference based in Portugal:

"The ABC Consensus Conference has established itself as the major international conference for Advanced Breast Cancer, and a forum for sharing best clinical practices, inform on the latest scientific updates in the field and, mainly, continue, over the editions, advancing on the goal of improving outcomes for all patients with advanced breast cancer."

In order to read the papers presented last November, I would have to have been a paid registrant. However, it appears that one can read the proceedings from earlier conferences online. I'm looking at the 2019 papers now. I'll let you and Tammy know if I find anything relevant to our discussion here.

Hugs,

Cindy

[Winner123]

Very good to read, thank you for sharing.

[jersey-jazz]

Meanwhile, those of us MBCers older than the prescribed age groups ending at the age of sixty-five are escaping scrutiny and defined life expectancy numbers. Tee her hee!

[Hazelgreen in reply to jersey-jazz]

Hi Francis,I like your way of looking at this issue! As individuals, none of us needs to feel intimidated by averages or "defined life expectancy numbers". Someone has to be 'the exception that proves the rule' ; it may as well be one of us.

As someone with widespread mets, I'm not avoiding any possibilities, but strongly believe that life is for the living, etc. I'll continue to base my decisions on the idea that my mets are likely slow-growing (since they took so long to catch up with me), and my quality of life is more important than any drug's potential to extend it.

Hugs,

Cindy

[TammyCross in reply to jersey-jazz]

Actually, we are not getting away with anything, as if we didn't already know that. The short report focused on the under 64, with the best news. The full article had results for 65 to 74, 75 to 84, and up. I mentioned those in my longer description.

[jersey-jazz in reply to TammyCross]

Apologies for not having read the fine print before commenting. I have now read the articles mentioned above and still say we may be slipping through the cracks. Aside from the pandemic circumscribing our lives, I am hale and hearty except for bad lymphedema and periods of total exhaustion and I try to smile, put one foot in front of the other and carry on as well as I can with my life. My mind is way ahead of my flagging body, though.Back to the subject at hand, it is good to see in print what we already know: The new drugs for cancer are making a decidedly positive difference to our longevity.

[TammyCross in reply to jersey-jazz]

Right. This was not so good news for us but based on old data, before all the newer treatments. I am actually having a wonderful time and feel terrific. -- Or I was, until I did an ambitious ballet turn during a virtual class and caught my foot raised en derriere on the loop of a bag hanging over a door knob. Crashed and did a number on my knee, which I broke when I first started treatment and within 4 days could run again. I seem to get carried away. My dance classes and dance teacher (private lessons!) are keeping me so cheerful. Or were. Now I am laid up and cry all the time. It is funny: this terminal diagnosis I faced stoically. In fact, found it liberating. The knee? Can't take it.

Counting on staying feeling well until I can get back on my feet and fly again.

[Hazelgreen in reply to TammyCross]

Aww, I'm sorry that you hurt your knee, Tammy! As you well know, it is very good to stay active, and hard to do with a limb out of commission. I hope it heals asap! Perhaps, you'll catch up on your reading while your knee heals.

Warm wishes & hugs,

Cindy

[TammyCross in reply to Hazelgreen]

Thanks. Thought I might catch up, but I am actually buried in work. The knee takes a lot of time (ER, x ray, orthopedist, MRI, crying for many hours, many hours trying to get appointment, back to orthopedist) and I am very slow. Cancer takes a lot of time, too. Petscan this week, blood draw, oncologist. Also, because of the Xgeva, I have tooth problems that can't be fixed, so I am seeing a dentist, a hygienist, a periodontist and an endodontist every couple of months. They are trying to keep me going without an extraction and implants, but there isn't much they can do except cause pain. I gather the periodontist thinks I might die before they run out of options. I would like to lie down and read, but...

[Hazelgreen in reply to TammyCross]

Your reply about why reading is not your substitute for dancing ("crying for many hours") made me laugh, Tammy! Whatever it takes to get through a day....😍 😂

[TammyCross in reply to Hazelgreen]

I keep forgetting to sign my real name. It's Chris, and very Irish last name. Tammy Cross was a cat I had, who died of cancer I guess right around the time I joined here. I realized after I chose that name that I had named her after a real woman who helped me with her rescue. So the real Tammy Cross is inadvertently here.

The crying was something. It was about my knee! Didn't cry about the big stuff, like cancer, or deaths of my family. It was my knee. Cried about 8 hours, until I found out I will walk and dance again. I feel quite refreshed, but worn out. I guess it did take the place of dancing. Same result.

[jersey-jazz in reply to TammyCross]

Dancing has always made me happy. When my soulmate/husband/king of my worldwide died from germs in a Scottish hospital, I travelled back and forth across the Atlantic on a ship that had six ballroom dancers at one's service. It seemed the only time I could feel happiness. I completely understand what you mean when you say that the diagnosis is liberating. Why is that, I ask?

[TammyCross in reply to jersey-jazz]

Isn't that something? It makes me really happy, like nothing else. I have been kind of glowing. The classes, the best ones, are outside, in the cold, with really nice people, and the instructors have become my good friends. But I think it is rather ridiculous at my age to suddenly throw myself into dancing, as though it is the only thing that matters. I live for those classes. I work really hard at them, as though I could get better and stronger.

I think what is liberating is -- what the hell? Nothing to lose. Might as well take what I want, do what I want. If not now, when? When I am feeling good (from the dancing), I have a new personality, brazen. At the classes, I am loud (well, I try to be) and take the lead when I feel like it -- I mean step out front and lead the class. This is not my usual self. Very open emotionally -- again, if not now, when? It seems to be half cancer and half dancing. They think I am good! A lot of that is that they can see I enjoy it; they say I am so present. I think that comes partly from not having a future, or a predictable one.

[jersey-jazz in reply to TammyCross]

Thank you for explaining the feeling of "...What the hell? Nothing to lose". Everyone else who has no major cloud to limit his/her future has much more to lose. They have to protect their future. We don't. We can take risks that we would not otherwise think of doing, as long as our bodies are up to it.

[TammyCross in reply to jersey-jazz]

Yes, isn't it fun? My worry is that it is so dependent on my feeling well.

Dancing, of all things. Putting my eggs in one fragile basket.

I mean to get a good camera and lenses and do that - doesn't require much physically. Just having trouble figuring the digital world. Have an excellent film camera, but similar quality digital cameras and lenses cost thousands more.

I think maybe acting, too. But don't know how to get into that. It is, for me, about getting out there after being...behind the scenes.

[Dragonfly2]

Thank you so much for bringing attention to this older article…it only points out that new therapies are working and extending survival rates. It’s so encouraging to see the improvements in younger women as these cancers (all variations of positive and negative hormonal expressions) can have a poorer outcome…but MBC at any age is devastating! I lost my MIL to this three years ago…at age 92 and now here I am closing in on two years after diagnosis at age 67. I remind myself that some of these newer therapies used after 2015 are having remarkable successes that are yet uncharted. My MIL was among the first to try IBrance and it’s my miracle drug now. It’s so important to remember that statistics are not written in stone…every patient is unique…may we all live to a ripe old age. 🥰

[Hazelgreen in reply to Dragonfly2]

Thanks for your input! As a researcher in my own field, I've always found it useful to read thoughtful analyses of older research. I agree with you that losses to MBC can be devastating to those left behind at any age. It is too bad that Ibrance didn't save your MIL, but it may well work for you.

I particularly appreciate your closing statement. It is very true that statistics do not account for the uniqueness of individuals. That is particularly true of medical statistics which generally say nothing about why some individuals profit while others do not.

Hugs,

Cindy

[TammyCross in reply to Hazelgreen]

I am a researcher, too! I keep telling people that population statistics don't tell individual stories. Just probabilities, but they are never 100%, so they don't say where you will land. Nonetheless, practitioners and policy makers apply them to individuals, as though they were truths.

[Dragonfly2 in reply to Hazelgreen]

Thank you Cindy!…best of luck and a long happy life!

[ChrisVict]

I for one am putting my faith in science and the new drugs that are coming up everyday!I always make note of the date of an article before I waste time reading it. This is an ever changing landscape and unbelievable

Headway is being made. I wish for all of us we will be around to see a cure of this horrible disease.

[Onedayatatime60]

Thanks for posting