Life does not end with a stage IV diagnosis (really!)

SeeQ

What a wonderful conversation this has been. It's okay to be who you are, and respond the way you want to, as long as you leave room for others to respond in they're own way. How hard is that?

And, I feel compelled to clarify, in case I didn't express myself well. My frustrations that I mentioned are my problem, and I try to address that and keep myself in a good frame of mind. I don't expect anyone to dim their light to spare me. I use your light to maintain balance...if that makes any sense.

sunnidays

Can you live 20 years with metastatic breast cancer?

David Chan, MD from UCLA, Stanford Oncology FellowshipUpdated December 25, 2020 · Upvoted by Liang-Hai Sie, Retired general internist, former intensive care physician.

Yes, but you have to have a certain kind of breast cancer and the metastasis have to not be in the brain while also responding very well to the very first treatment regimen.

The cancer types are ER positive and or HER2 positive. Triple negative breast cancers, absent a target found on next generation sequencing (Foundation1 or equivalent), typically have short term benefit from current available chemotherapy and immunotherapy. The new Trodelvy is helpful but we need more.

ER positive bone only metastasis can have exceptional responses and long cancer control with a combination of endocrine treatment and a CDK4/6 inhibitor. We have patients out 7 years in remission on the initial Pfizer clinical trial.

Even prior to CDK inhibitors I have patients surviving 20 plus years with biopsy proven bone only metastasis using anastrozole or letrozole.

HER2 positive without brain metastasis can have very dramatic and durable responses to Herceptin based treatment. There are 25 and 30 year survivors that are off treatment now but had extended treatment on UCLA's initial Herceptin clinical trial. Patients on that trial had a lot of chemotherapy before having the opportunity to enroll in the phase 1 and 2 Herceptin studies.

I have a number of patients in continued remission on Herceptin going on 10 and 15 years. Some patients may be cured but I can't get patients to stop Herceptin to find out, it's so well tolerated.

The above is from Quora to me it is a little bit too optimistic, but why a little bit of optimism never did any harm.

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sunnidays

On optimism in general, I dont congratulate myself for being optimistic the same way as I wouldn't berate someone for negativity they are just personality traits people are born with.

I am off to get my eyebrows done we have a family wedding next Saturday and i have 3 very glamours sisters, so have to make an effort.

Have a good day eveyone.

DivineMrsM

SFCakes, *thank you* for using the f word so perfectly!

For me, moving forward with life is about quiet determination. It's not so much an outward display of being upbeat. I lost the carefree part of me at diagnosis. I had a rough childhood and created a better world for myself as an adult which made me aware of and grateful for many things decades before mbc. I still have gratitude except mbc adds a sort of melancholy to the mix.

I see things differently now than in those first few years of mbc. I remember feeling like a severely wounded soldier the first couple of years, emotionally weak and vulnerable. Where I'd once been an outgoing little powerhouse, now I felt like I was delegated to an extended care infirmary while everyone else got to continue full speed ahead. Through a process, I dug deep to figure out how to deal with the new realities.

I've had many ups and downs since then, and not all cancer related because life is messy! There is a constant adapting to changes, physical or otherwise (like a pandemic!). Being ten years out from dx, I do not think I have any right to complain and I am okay with that. I want at least ten more good years.

It's important to acknowledge our feelings, whatever they may be. We may share some or many similarities but as was said, circumstances and personalities will influence each person's unique experience.

moth

oh lol sunnidays, as a TNBC with organ mets for me it's not optimistic at all. It's like every study I read is "oh yeah, except those pts, so sad. we just don't have much for them" Trodelvy clinical trials are reporting a median OS benefit of a few months. I mean it's better than counting in weeks, so there's that! <-- see I can look for the positive

Divine, I like your comments about our own histories and personalities moulding our experience of a terminal dx too. I wish you at least 10 more awesome years

sunnidays

Does anyone find music makes them sad after there MBC diagnoses? I am listing to Fleetwood mac remind me of being young and dancing, I always think Stevie Nicks has a bitter-sweet life despite all the money and fame. MBC has made me reflect on my life a lot I got married for the first time at 19 to a man who was 16 years older than me it was a disaster on the other hand I have two beautiful daughters from the relationship. As I live in in a small town I still see him around he never remarried and has ended up an old lonely eccentric. I have had to help him a few times because the girls don't leave near enough and he has no one else. Thinking about the past a lot today.

Anonymous

sunní days - I appreciate seeing that article. In the case of HER2+, based on what I have learned, he is not exaggerating. So for me, that’s one reason I allow myself some optimism. I am in that “lucky” group. But I also remember not to get too comfortable— “some people” getting 20 years is not the same as “everyone” getting 20 years. I keep my sense of urgency to get on with life because time is not unlimited.

When I was first diagnosed, my onc. told me there was recruitment going on for a long term survivors study, and none of her patients got accepted because the study had filled up. She said it was surprising that now, there are so many with MBC living that long that long timers are less rare and hard to find. Her attitude helped me have a little bit of hope as well

NCYogi

Olma, I love a good F bomb 💣. Well said.

NCYogi

Oops! That was SF Cakes! I really can’t keep up! Regardless, this thread is my favorite & I am learning so much from alllll of you.
Someone recently told me this would be a transformative experience (good & bad) & that “God would show up in many different ways”. You guys are proving that & I’m very grateful.

Anonymous

haha, that’s ok, I’ve been known to drop a few myself, although I’m usually on good behavior here

Elderberry

exbrnxgrl: I haven't been here for awhile. this was one of the first threads I went to after my DX. I came back often, if just to read. All of you made me feel so much better. I thought I had weeks to live - then I realized I might actually have time left in years. Your long run and your optimism was a gift. I am so beyond shocked and appalled and angry on your behalf. How dare anyone tell you that you are not "metastatic enough". Would they be happier about you if they saw you in sackcloth and ashes, howling and rolling around on the floor? How dare they be angry/resentful. Wishing you progression - WTF?!! I am holding back on what I really want to say. Cruelty has no place...anywhere at any time. I am sorry you were on the receiving end of such nastiness.

sunnidays: yes, MBC does cause one to reflect. But I am also at an age when reflection is already a part of my life. I hear something by Country Joe and The Fish and I can almost smell patchouli oil --- :-)

Divine: as Bette Davis said "Getting old ain't for sissies" And who said about our existence on this earth "Nobody gets out alive" Life is messy. Life is frustrating. Life is full of pain. Life is also full of beauty and joy and wonder.

NCYogi: You are a new name for me! Hi and welcome.

exbrnxgrl

Thank you so much, elderberry. I should point out that most of that unpleasant behavior happened quite a few years ago, about the time I started this thread (2014). It was shocking but time has passed with no further problems. In the end, my hurt was short lived, though not forgotten. I actually feel bad for those who perpetrated the cruelty as it speaks volumes about them. Again, I don’t love everyone in this world but I can’t even fathom going out of my way to purposely be cruel to others.

BlueGirlRedState

exbrnxgrl - it seems like you have found inner peace. Hugs. Wishing I could do the same rather than trolling the internet for a "cure", but I really do appreciate the people who do post information they find. Sharing is good. It makes me sad when people attack each other, Disagreeing is ok, but being mean, is not. I still find myself asking "why me". So many examples of people who seem to do everything right, but still get cancer. And examples where they do every unhealthy/risky thing possible, and live cancer free. Continue your positive thoughts.

Anonymous

I saw this topic pop up again yesterday and I want to add to my other replies.

I did bite a few people's heads off when I was first diagnosed. I do think it was due to the anxiety that I was full of in the beginning rather than anger that this happened to me. It was mostly in the form of yelling/bitching at providers who were giving me the runaround and they deserved pushback, but had I been calmer, I would have acted more assertive than super aggressive like I did.

I really was a ball of anxiety, I was uninsured at the time and was determined to make my treatment happen no matter what. Even before I knew I was Stage 4, hearing the word cancer was like a bomb dropped so I had less than zero patience.

I'm not sorry for how I behaved, if anything, it may have helped my cause and furthered my quest to arrange my treatment.

So I'm not always serene and hippy-dippy - I just have a general attitude of accepting what is and doing what I have to do.

One person who got a full blast of fire from me was the social worker who called me from the first breast center I went to, where they did very little to give me any helpful referrals. She called to check if I was in treatment yet and I complained about some things at her facility and she told me “Now, you have to be positive, studies show that people with positive attitudes do better, bla bla" LOL - I yelled at her, “ I AM BEING POSITIVE IM SIGNED UP TO SEE A SURGEON ALREADY NO THANKS TO YOU. IM NOT LAYING IN BED WITHN THE COVERS OVER MY HEAD IM TAKING CARE OF MYSELF AND THATS POSITIVE. WHAT ELSE WOULD YOU LIKE TO KNOW"

(insert ten laugh emojis here). One of my blow ups that I am not in the least sorry for

exbrnxgrl

Bluegirlredstate,

I can’t be too sure I’ve found inner peace, just a way to cope with bad things. I think I had two things going for me before bc that helped. The biggest being to not dwell on things I can’t change. If I can jump into action and change something I don’t like, I will, but I can’t waste time spinning my wheels on things that are out of my control. Yes, I do get upset but I let it out and then move forward. I don’t know how much time I have left in this world but I won’t waste it on things I have no control over.

The second thing is that I never had any illusions that I would not get bc, or any other disease for that matter regardless of how healthy my lifestyle had been, family history, etc. There are very few guarantees in life and I certainly know of nothing that will guarantee you won’t develop bc or other diseases. Yes, exercise, diet and other lifestyle habits can lower your chances but there are no money back guarantees!

Trolling the internet looking for a cure is what many have done. For me, all of the anecdotes are interesting but I am too much of an academic to give much weight to anything but scientific research. Could one of these anecdotal cures/protocols/ regimens really work? I suppose so but without the data I remain a skeptic. While I appreciate folks sharing info on unconventional cures or treatments, I have yet to see proof beyond anecdotes. Still, if it comforts you, have at it but if it is stressing you out in anyway consider taking a break. I wish the cure was out there as we all do but I’m not ready to grasp at straws right now and likely never will. Take care.

sunnidays

I do research the science of it because I find it interesting maybe that is a bit odd but if there was a cure I am sure my oncologist would know about it as I said before long therm control is much more likely before they find a cure. We had a family wedding this last weekend they met at school when they were 16. I made them a card from a photo I captured of a path through a wood it represents them setting out on the path of life together but the path is not straight and you cant see the end . Life going on is the bit that is hard to get your head around I am still working I don't look or feel sick maybe that will settle down after a while.

exbrnxgrl

sunnidays,

I just retired but worked for 10 years after my mbc dx. I always looked completely well too. It is still a bit weird when I think, “Gee, I have a terminal disease but I’m not dying!” I realize that this is pure luck as I don’t do anything extra like special diets, protocols or regimens. You will get your head around it in time. Enjoy your life as best as you can !

exbrnxgrl

I wasn’t going to post until after the fact but I have my annual PET today. I feel a bit more anxious than usual. Actually, since I hit the ten year mark I am feeling more anxiety over potential progression. I feel like I have experienced more good luck than most stage IV members*but ten years is a milestone that makes me feel my luck might be running out. Additionally, my PET is not until 6:00 pm. The only other time I had a scan so late in the day led to the discovery of my bone met and pneumothorax. So, my crazy brain is now thinking that having such a late day scan is a bad omen.

What has happened to me??? Rational, pragmatic, fact driven… It’s all gone out the window today. I know this is completely irrational and time of day and bad PET results have no relationship. Maybe retirement has done something to me. Tomorrow would be the first day of school if I was still teaching. I am glad I retired but still not used to it. What to do, what to do…

*Many of you know that I do feel guilt over my long survival because I feel that I have done nothing to achieve this. No special diets, no supplements other than melatonin no protocols or regimens. My mo doesn’t do tumor markers and I pay little attention to the details of bloodwork if all looks good. I feel like a stage IV slacker yet here I am.

star2017

Exbrnxgirl, best wishes! What you're feeling I'd totally normal. Praying for continued good news.

exbrnxgrl

Thank you star! The problem is that it’s not normal for me! I can’t even count the number of PET scans I’ve had over the course of a decade but I have always been cool, rational and pragmatic. I do get nervous while waiting for results but this is the first time I have felt so anxious before the scan. Weird

star2017

I can understand the feeling that you've been putting off the inevitable. And I can understand why the ten years can trigger that feeling. But remember, nothing is inevitable.

BlueGirlRedState

exbrnxgrl - Hoping all goes well with the scans and that good news continues. We all celebrate when someone is doing well.

SeeQ

exbrnxgirl - in your pocket for your scan today. This is probably the first time in 10 years you've had time to think about it - normally you'd be gearing up for the new school year with little or no time for this distraction!

exbrnxgrl

Thanks blue girl! I finished eating a nice piece of salmon about 30 minutes ago and that will be my last meal until after the scan. I put off my wash day over the weekend so it would occupy my time this afternoon. No, not clothes washing, hair washing! I have very curly hair and I pretty much follow the same routine that Black women have followed for ages. We don’t wash our hair frequently, though we do refresh and co-wash (using just conditioner). The wash is followed by 30 minutes under a heat cap with a deep conditioner then the rest of the process to nurture frizz free, spiral curls. Most curly hair is quite dry and aging makes that worse. So although my curls are natural, they need lots of TLC. Let’s see how longI can drag out this process!

exbrnxgrl

SeeQ,

That is exactly what my best friend said! Great minds think alike 😊

ShetlandPony

PTSD does not abide by rational, pragmatic, and fact-driven, my friend

Positive2strong

Exbrngrl

Thinking of you for calm during your scan

To everyone

All of you give me hope. Since I have been diagnosed I barely have strength to do anything.I have put off my leg surgery because of Covid and that I have no strength. I wonder how I get to the point of feeling good and doing thing. If I do my hair and makeup I look great but I feel awful, no appetite, upset stomach, leg pain, now blood in my nose. This weekend we were to go to Pebble Beach but I just don’t think I can do it. I feel faint often. The doc has me off Ibrance for now but haven’t heard what’s next. I am feeling like a wimp or will this get better. I need to get in for my second Faslodex shot. It seems only people telling me anything are all of you on this thread. I am thinking I should buy some supplement like Super greens as I’m not eating. I used to juice but have no stamina for that now.

I love reading all your thoughts and comments.

SeeQ

Positive2strong - the treatment in the beginning was really hard. I slept most of the day and had zero appetite. I had to force myself to eat at least a few bites at meal time. It will get better.

Anonymous

Exbrnxgirl- in your pocket for scans!

Positive2strong, hang in there. I hope you can get in for your faslodex shot #2. I know you have already heard this, but you are at a really stressful time in this Stage IV journey. Personally, I could feel a big difference in some of my symptoms by the 3rd faslodex shot (pressure on my windpipe by enlarged metastatic lymph nodes). Hoping you start feeling better soon. It helped me to have a plan and start it so I can imagine waiting for leg surgery is very stressful and your reaction to Ibrance was really stressful. I hope you get an updated plan soon!

Leigh68

Exbrngrl ~

I haven't tuned into this forum for about a year. I've always been a quiet lurker who logs in when feeling vulnerable and grasping for hope. You should know Exbrngrl, that your story has been a bright light in my dark tunnel from the start. Your calm and grace has been something we should all aspire to.

If you were my sister (which you are in a way), I would tell you that your comment of “So, my crazy brain is now thinking that having such a late day scan is a bad omen" is silly. The timing of the scan doesn’t matter. It doesn’t matter at all. But I understand the superstitiousness. I talk to all of my deceased relatives and friends prior to my scans. I plead with them to help me. That’s my superstition. The only problem with a late scan for you is a potentially delayed reading by the radiologist. That’s it…no bad omens.

Just want you to know that you are loved and thought of by someone in Virginia.

Much love and hope,

Leigh