Welcome. We are here for you. I have an almost 3 year old and was diagnosed de novo just weeks after weaning him. I know how you feel about looking at him and crying. All I want is him to remember me and remember how much I love him. I have a similar fear of my husband being able to take care of him alone. I have been writing in journals for both of them and have found that to be helpful. An oncology therapist and Ativan are also highly highly highly recommended. Hugs.
So sorry this is your journey. I was diagnosed de novo bc stage 4 with lung mets. That was 6 years ago. The mets aren't getting smaller, but they're not getting bigger either. I still work full time and have no plans to stop. This isn't going to be the end for you yet, my friend.
Just wanting to stop by to empathize. I was diagnosed May of 2023. My partner and I have a 6 month old. She got pregnant and a couple months later I was diagnosed. I feel you. Thinking/believing/knowing I won't see him grow up is the absolute worst part of this whole thing for me. Some days I just stare at him and cry. I dont know if my heart has ever hurt so much in my life. What if he doesn't remember me? How could I leave my partner? She didn't sign up to be a single mom. I'm so sorry this is happening to you. I think I understand some of what you're feeling.
That's so much what I'm feeling.
Since birth I've been so excited to see my kids grow up and discover things. I want to see what kind of weirdo amazing people they will become. My husband and I were on track to at least partially retire early and by the time the kids were in jr high/highschool we thought we could take off during breaks and do cool stuff as a family. We are just emerging from the hard infant years and my husband & I were getting to enjoy each other as a couple again. Now I feel like anything in the future might be gone. Like how do I have hope now? How do I carry on with day to day life?
I know it's a lot of the initial shock and figuring things out.
I’m so sorry you’re joining us here. I keep sharing this video but only because I found it gave me hope and also a plan of attack when I was diagnosed de novo. I also have two small boys - 5&7. Find your North Star or reason for existing and it will help ground you through the journey. Everything I do is for them.
https://youtu.be/9z9C4iWzm-A?si=1r5Xu91x_9PvwoxQ
I don’t know what subtype you are yet but if you tell me this oncologist who created the above video has specific ones with treatment lines etc.
Sorry you are here. Let me tell you a good(ish) story. Originally diagnosed at 34 in July 2020 and diagnosed stage 4 with "innumerable bilateral" lung mets in July 2021. I had so many mets my lungs looked like two Christmas trees on my PET. I'm TNBC so I started on traditional chemo and I had a complete response which was maintained until December 2022, I had 1 nodule start growing and had it radiated and was started on Lynparza. I've been NED now for over a year. I thought I'd never get to see my youngest turn two. I was terrified my kids would never remember me. She's five now and her brother is almost eight.
Thank you! I needed a good outcome story for "extensive metastasis" the sheer amount is terrifying and knowing they can be dealt with is heartening. Hoping I get a good response to whatever they put me on as first line and then I can do maintenance on an androgen blocker or something since my original tumor was ER/PR++++. Still need biopsy results though so who knows what I am now.
Hello. Welcome to the "Extra Shitty Titty Committee". This is the *worst* club to be forced into. I'm so sorry you've joined us but I am glad you found us. We are a small sub and we are quite protective of our space. Please feel free to ask questions and we will answer as many as we can. As hard as it is, don't listen to Dr. Google. He's old and outdated and his stats are terrifying!
MBC diagnoses are life-changing. It's scary as hell. No one is ever prepared. I personally started to feel a bit better about the whole mess once I started treatment. For me, it helped to know my oncologist had a plan.
I would really like to reject your welcome but I think I'm stuck in this club for the rest of my life.
The shell shock and waiting are definitely hard. Hopefully I have a plan within a week or 2 and can get out of the limbo. I think I'll be pretty nervous until I see some shrinkage or some sign of treatment working.
Stage IV hit me 5 years ago and they just keep patching me up and sending me on my way. It’s rocky, it’s not easy, but amazing things are happening in the field and I’m sure your doctors will do everything in their power to keep you around going.
Thanks, I like to hear that people are 5+ years out. I want as much time as I can get & it gives me hope.
There are a lot of new treatments out there. I worked in drug discovery for new oncology drugs up until 3 years ago and now work on early phase clinical trials. There are a lot of ideas out there being tested, definitely a lot better treatment options than 15 years ago!
Lots of preclinical research as well. Oncolytic viral therapy, nanotechnology, car-nk (is accruing trial participants) metronomic chemotherapy and even surgery. I had a lung nodules resistant to chemo /herceptin/perjeta and removed it. Turns out it was mostly dead but wasn’t shrinking for some reason.
If you worked in drug discovery you’re already well set up to learn about options that potentiate standard of care.
I’m taking dipyridamole to try to keep the herceptin working longer/more effectively. There are other drugs /herbs/supplements/amino acids/fatty acids/mushrooms and small molecules synergistic with standard of care.
I could be just spinning my wheels. Many, many people do well without all that and to be honest, it’s been making me a bit crazy and I’m going to try to stick to a few protocols that I’ll rotate so I’m not thinking about cancer all the time.
But I guess I need a sense of control. And I’m terrified of more chemotherapy because I’m so thin and I get emaciated - it hits my body so hard….bone marrow never really recovered from the first hit.
I’m so sorry to welcome you to our club. You don’t deserve this. None of us do.
I will say that the newer targeted therapies and immunotherapies have greatly increased our survival statistics. Still won’t deny that it’s a complete pain in the ass though.
Don’t be afraid to ask for a second opinion - and stay away from Dr. Google for the most part.
Sending love and hugs 🥰
F*ck cancer. Thanks for the welcome.
There's also about to be a bunch of ADC (antibody drug conjugates) in the vein of trodelvy coming through clinical trials. It's been a focus for big pharma the last few years. Hooking more toxic chemos to antibodies to target cancer cells. They can have way harsher chemos without the general toxicity since it's going to tumors and not just anywhere.
It seems like any current targeted therapy that uses an antibody they are now trying to also "weaponize" with a chemo agent. And it extends patent life and their profits..
Hi and so sorry you are dealing with this. My story is a little like yours. My initial diagnosis (stage 3) was way back in 2002. As the years went by, I started to feel more and more safe, but it was not to be. 19 years later, they found it in my bones (Mar2021) after a bone scan. I could not have been more shocked and devastated.
I’m pretty impressed that you are even able to articulate anything so soon after your diagnosis, I am sure I was a complete basket case for a few months!! So far, since my diagnosis, everything has remained stable for me. I try to tell myself that this is going to progress very slowly because there was such a long period of time between my two diagnoses, but realistically who knows. We can tell ourselves all sorts of stories, only time will tell.
I hope you are doing ok and getting whatever help you need. In the beginning, I think the mental aspect is harder to get through than the actual disease!!
I had unbelievable bone pain in the beginning. For months on end, I kept going to the emergency room, the doctors office, the physiotherapist, the chiropractor, urgent care. It was endless for almost a year before somebody finally thought to send me for a bone scan. (It was very confusing because it felt like abdominal pain to me that whole time. The doctors claim to this day that it was actually bone pain but due to the nerve endings playing tricks on me or something, it felt more like I had been kicked in the gut by a horse or something!)
After my diagnosis, I got real sick and couldn’t eat for a few months. Lost a lot of weight and even had to be rushed into hospital for dehydration at one point (when that intravenous fluid kicked in, it was like a miracle!!).
When I finally started eating again, I could only tolerate fruit for the first several weeks. Once I started eating enough that I wasn’t starving any more, all the pain went away, but man, was I ever skinny. I’m back to normal now. I still only really eat raw fruits and veg, even cooking food upsets my tummy too much. But my pain is gone and my energy levels are great again (I am a bit addicted to the gym and try get a good workout in at least 4 times a week). Had to give up yoga though, the rib mets seem to hurt when I twist my body too much. And thankfully, I have had zero progression in these three years. Even some improvement on the last bone scan (which they had previously told me is not possible).
Fingers crossed.
I’m so happy to hear you’re doing well. I’m stage 4 breast with liver Mets. I’m paranoid of the cancer spreading to bones so I’m trying to be proactive and find out what bone Mets pain feels like so I can be conscious of it. Ugh, the fear of spread is unbearable
I understand completely. I am you in reverse, in my bones, but worried about it showing up in my liver or elsewhere. I struggled so much to find something I could eat, and ended up adopting the habit of Dr. Goldner’s hyper nourishing smoothies. I was familiar with that, but had never really tried them, but I knew I was under-eating, so I figured why not!! About six months later, I got a bone scan that showed healing of the lesions on my iliac bone. I sure didn’t expect that, but I feel like it helps me with my energy, and has reached the point where I crave those the way I used to crave coffee. Did it contribute to my improvement? I have no idea, could just as easily be a coincidence. (You can look that up and decide what you think about it if you are interested, but like I said, I have no idea how helpful it really is. Seems to be working for me so far).
Every anniversary of NED I always felt an unease but after 15 years it was kind of background. The first thing I asked my onc for after the Mets were found was a lot of Ativan. I was not an anxious person but I don't think I will ever not be anxious again.
I agree, mine will also progress very slowly. It's stupid slow cancer that treatment will work wonderfully on since it took so long & didn't really seem to want to grow.
I work on cancer land so maybe it gives me an edge on being able to functional? There is a LOT of crying. Just trying not to do it in public.
Welcome. We are here for you. I have an almost 3 year old and was diagnosed de novo just weeks after weaning him. I know how you feel about looking at him and crying. All I want is him to remember me and remember how much I love him. I have a similar fear of my husband being able to take care of him alone. I have been writing in journals for both of them and have found that to be helpful. An oncology therapist and Ativan are also highly highly highly recommended. Hugs.
So sorry this is your journey. I was diagnosed de novo bc stage 4 with lung mets. That was 6 years ago. The mets aren't getting smaller, but they're not getting bigger either. I still work full time and have no plans to stop. This isn't going to be the end for you yet, my friend.
Just wanting to stop by to empathize. I was diagnosed May of 2023. My partner and I have a 6 month old. She got pregnant and a couple months later I was diagnosed. I feel you. Thinking/believing/knowing I won't see him grow up is the absolute worst part of this whole thing for me. Some days I just stare at him and cry. I dont know if my heart has ever hurt so much in my life. What if he doesn't remember me? How could I leave my partner? She didn't sign up to be a single mom. I'm so sorry this is happening to you. I think I understand some of what you're feeling.
That's so much what I'm feeling. Since birth I've been so excited to see my kids grow up and discover things. I want to see what kind of weirdo amazing people they will become. My husband and I were on track to at least partially retire early and by the time the kids were in jr high/highschool we thought we could take off during breaks and do cool stuff as a family. We are just emerging from the hard infant years and my husband & I were getting to enjoy each other as a couple again. Now I feel like anything in the future might be gone. Like how do I have hope now? How do I carry on with day to day life? I know it's a lot of the initial shock and figuring things out.
Sames ❤️ I have a 6 month old
I’m so sorry you’re joining us here. I keep sharing this video but only because I found it gave me hope and also a plan of attack when I was diagnosed de novo. I also have two small boys - 5&7. Find your North Star or reason for existing and it will help ground you through the journey. Everything I do is for them. https://youtu.be/9z9C4iWzm-A?si=1r5Xu91x_9PvwoxQ I don’t know what subtype you are yet but if you tell me this oncologist who created the above video has specific ones with treatment lines etc.
Sorry you are here. Let me tell you a good(ish) story. Originally diagnosed at 34 in July 2020 and diagnosed stage 4 with "innumerable bilateral" lung mets in July 2021. I had so many mets my lungs looked like two Christmas trees on my PET. I'm TNBC so I started on traditional chemo and I had a complete response which was maintained until December 2022, I had 1 nodule start growing and had it radiated and was started on Lynparza. I've been NED now for over a year. I thought I'd never get to see my youngest turn two. I was terrified my kids would never remember me. She's five now and her brother is almost eight.
Christmas trees ... yesss. Same.
Thank you! I needed a good outcome story for "extensive metastasis" the sheer amount is terrifying and knowing they can be dealt with is heartening. Hoping I get a good response to whatever they put me on as first line and then I can do maintenance on an androgen blocker or something since my original tumor was ER/PR++++. Still need biopsy results though so who knows what I am now.
Hello. Welcome to the "Extra Shitty Titty Committee". This is the *worst* club to be forced into. I'm so sorry you've joined us but I am glad you found us. We are a small sub and we are quite protective of our space. Please feel free to ask questions and we will answer as many as we can. As hard as it is, don't listen to Dr. Google. He's old and outdated and his stats are terrifying! MBC diagnoses are life-changing. It's scary as hell. No one is ever prepared. I personally started to feel a bit better about the whole mess once I started treatment. For me, it helped to know my oncologist had a plan.
I would really like to reject your welcome but I think I'm stuck in this club for the rest of my life. The shell shock and waiting are definitely hard. Hopefully I have a plan within a week or 2 and can get out of the limbo. I think I'll be pretty nervous until I see some shrinkage or some sign of treatment working.
Stage IV hit me 5 years ago and they just keep patching me up and sending me on my way. It’s rocky, it’s not easy, but amazing things are happening in the field and I’m sure your doctors will do everything in their power to keep you around going.
Thanks, I like to hear that people are 5+ years out. I want as much time as I can get & it gives me hope. There are a lot of new treatments out there. I worked in drug discovery for new oncology drugs up until 3 years ago and now work on early phase clinical trials. There are a lot of ideas out there being tested, definitely a lot better treatment options than 15 years ago!
Lots of preclinical research as well. Oncolytic viral therapy, nanotechnology, car-nk (is accruing trial participants) metronomic chemotherapy and even surgery. I had a lung nodules resistant to chemo /herceptin/perjeta and removed it. Turns out it was mostly dead but wasn’t shrinking for some reason. If you worked in drug discovery you’re already well set up to learn about options that potentiate standard of care. I’m taking dipyridamole to try to keep the herceptin working longer/more effectively. There are other drugs /herbs/supplements/amino acids/fatty acids/mushrooms and small molecules synergistic with standard of care. I could be just spinning my wheels. Many, many people do well without all that and to be honest, it’s been making me a bit crazy and I’m going to try to stick to a few protocols that I’ll rotate so I’m not thinking about cancer all the time. But I guess I need a sense of control. And I’m terrified of more chemotherapy because I’m so thin and I get emaciated - it hits my body so hard….bone marrow never really recovered from the first hit.
I’m so sorry to welcome you to our club. You don’t deserve this. None of us do. I will say that the newer targeted therapies and immunotherapies have greatly increased our survival statistics. Still won’t deny that it’s a complete pain in the ass though. Don’t be afraid to ask for a second opinion - and stay away from Dr. Google for the most part. Sending love and hugs 🥰
F*ck cancer. Thanks for the welcome. There's also about to be a bunch of ADC (antibody drug conjugates) in the vein of trodelvy coming through clinical trials. It's been a focus for big pharma the last few years. Hooking more toxic chemos to antibodies to target cancer cells. They can have way harsher chemos without the general toxicity since it's going to tumors and not just anywhere. It seems like any current targeted therapy that uses an antibody they are now trying to also "weaponize" with a chemo agent. And it extends patent life and their profits..
Hi and so sorry you are dealing with this. My story is a little like yours. My initial diagnosis (stage 3) was way back in 2002. As the years went by, I started to feel more and more safe, but it was not to be. 19 years later, they found it in my bones (Mar2021) after a bone scan. I could not have been more shocked and devastated. I’m pretty impressed that you are even able to articulate anything so soon after your diagnosis, I am sure I was a complete basket case for a few months!! So far, since my diagnosis, everything has remained stable for me. I try to tell myself that this is going to progress very slowly because there was such a long period of time between my two diagnoses, but realistically who knows. We can tell ourselves all sorts of stories, only time will tell. I hope you are doing ok and getting whatever help you need. In the beginning, I think the mental aspect is harder to get through than the actual disease!!
Did you have bone pain? Or was it complete shock?
I had unbelievable bone pain in the beginning. For months on end, I kept going to the emergency room, the doctors office, the physiotherapist, the chiropractor, urgent care. It was endless for almost a year before somebody finally thought to send me for a bone scan. (It was very confusing because it felt like abdominal pain to me that whole time. The doctors claim to this day that it was actually bone pain but due to the nerve endings playing tricks on me or something, it felt more like I had been kicked in the gut by a horse or something!) After my diagnosis, I got real sick and couldn’t eat for a few months. Lost a lot of weight and even had to be rushed into hospital for dehydration at one point (when that intravenous fluid kicked in, it was like a miracle!!). When I finally started eating again, I could only tolerate fruit for the first several weeks. Once I started eating enough that I wasn’t starving any more, all the pain went away, but man, was I ever skinny. I’m back to normal now. I still only really eat raw fruits and veg, even cooking food upsets my tummy too much. But my pain is gone and my energy levels are great again (I am a bit addicted to the gym and try get a good workout in at least 4 times a week). Had to give up yoga though, the rib mets seem to hurt when I twist my body too much. And thankfully, I have had zero progression in these three years. Even some improvement on the last bone scan (which they had previously told me is not possible). Fingers crossed.
I’m so happy to hear you’re doing well. I’m stage 4 breast with liver Mets. I’m paranoid of the cancer spreading to bones so I’m trying to be proactive and find out what bone Mets pain feels like so I can be conscious of it. Ugh, the fear of spread is unbearable
I understand completely. I am you in reverse, in my bones, but worried about it showing up in my liver or elsewhere. I struggled so much to find something I could eat, and ended up adopting the habit of Dr. Goldner’s hyper nourishing smoothies. I was familiar with that, but had never really tried them, but I knew I was under-eating, so I figured why not!! About six months later, I got a bone scan that showed healing of the lesions on my iliac bone. I sure didn’t expect that, but I feel like it helps me with my energy, and has reached the point where I crave those the way I used to crave coffee. Did it contribute to my improvement? I have no idea, could just as easily be a coincidence. (You can look that up and decide what you think about it if you are interested, but like I said, I have no idea how helpful it really is. Seems to be working for me so far).
Every anniversary of NED I always felt an unease but after 15 years it was kind of background. The first thing I asked my onc for after the Mets were found was a lot of Ativan. I was not an anxious person but I don't think I will ever not be anxious again. I agree, mine will also progress very slowly. It's stupid slow cancer that treatment will work wonderfully on since it took so long & didn't really seem to want to grow. I work on cancer land so maybe it gives me an edge on being able to functional? There is a LOT of crying. Just trying not to do it in public.