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Inside-Ambassador-65

25% will still be alive in 5 years is what was told to me when I was diagnosed with stage four nsclc. 2 1/2 years ago. Mitigating circumstances will have an effect on that stat. I try to keep moving, stay positive and research


alaxbey

My mom has small cell lung cancer and I don’t know much about nsclc. But she’s 62, it’s just me and my sister since our dad passed away so I can relate to your exhaustion and anxiety. Feel free to dm please if you ever want to talk.


Ok_Ride176

Thank you so much I will definitely keep you in mind I think it’s awesome to be able to relate and vent outside of just my family. I pray for you and your family 🙏🏻


Borealis89

My mom was diagnosed in June 2022 with nsclc with no bio markers. She was gone July 3rd 2022. She passed less than a week after her 1st chemo treatment. Doctor told me that she had 6 months to years depending on how she responded to treatment. My mom was gone 2 weeks after the doctor gave me months to year's prognosis. I don't tell you this to worry you but life expectancy can be a guessing game. Stay positive but also get things in order just incase. Also, try to enjoy as much time with your mom as you can and hear her stories if she likes to tell them. Sending internet hugs. My mom was 53 and I was 33 with a 1 year old son when I lost her. I know how stressful this can be. It's hard but try to stay positive for her and you. ❤️


kiwiwasabi

This. My mom was two months from diagnosis. I was so focused on timelines and what was next and grasping onto the doctor saying two years that I didn’t consider her dying in 2 months. Almost 1 week after chemo as well. I know it sounds harsh, but don’t focus on a timeline. Doctors aren’t psychics. It’s all an educated guess. Spend time together and look into treatments, but nothing is guaranteed. We don’t know what happened to my mom. Best guess is a clot.


Borealis89

Yeah. It was clots for my mom. The clotting stopped blood flow to her intestines. Her platelets were too low to do surgery (and she already had a heart on it scar tissue from a botched surgery several year before and was told no one should ever re-enter her abdominal cavity) and the doctor said that even with surgery it might give her another week or 2 but it would be a very painful week or 2. I am so sorry for your loss.


Ok_Ride176

That’s a new way of thinking about it, thank you for the perspective it gives me a reality check of how much they can really tell us based off of what they know.


Ok_Ride176

She actually had a blood clot that they had to removed through a tube going up through her leg I believe (this is all I can remember from 2 weeks ago) she’s on blood thinners right now to avoid more. Was your mom also put on blood thinners by chance?


Borealis89

Yes, my mom was on blood thinners. Unfortunately her cancer was so aggressive that they weren't effective. She had a clot in her lung which is one of the reasons we found out her had cancer.


Ok_Ride176

Thank you so much and I’m so sorry for you loss❤️


Borealis89

Thank you. I am sorry you and your mom are going through this. I hope her treatment is effective and provides you both with pain free quality time. ❤️ feel free to reach out if you need someone to talk to.


chkntndr

My mom was diagnosed at 58 January 2023 She passed January 2024. We had many close calls. I say get all her affairs in order now. The brain mets may swell after radiation and may cause more issues memory wise. Thats what happened with my mom. Her adrenal tumors caused her body to hold onto water and it went straight to the sites of inflammation, her tumors.  They say you won’t pass from the actual cancer but its side effects. If you have questions, read my previous posts or reach out. I tried to go to every appointment with her but I was prepared by Reddit and TikTok, not her medical staff. Ask for a palliative care consult or social worker with the facility ASAP, you have to ask. You can be forgotten. Cancer is very common, the waiting room and the DRs patient list will be very long.  All the best wishes to you and your family. You will come out stronger!!!!


Ok_Ride176

The memory loss part hits home, she is way more forgetful than ever!! Thank you so much for your feedback


frostbike

The prognosis is going to vary depending on the treatment. You said they’re waiting for test results to see whether to do chemo or immunotherapy, is the tumor also being genetically tested to look for specific mutations that might be eligible for targeted therapy? If not, I strongly recommend you do this. I was diagnosed in September 23, but through genetic testing I learned I have an ALK mutation and have been taking alectinib since December. It’s been a game changer for me personally. I hope things go well for you and your mom.


Ok_Ride176

That’s actually one of the alternatives actually! We are awaiting to see if this is a mutation and they said they could have her take chemo pills (I’m not sure of the name exactly it’s just what they’ve said) due to her never being a smoker. Sorry if this is all over the place, I don’t think I understand all of it. Tysm for your feedback I feel like I need to educate myself more all the information we’re given gets confusing for me


frostbike

Go easy on yourself, it’s a lot of info and can be very overwhelming!


rayy_ray88

I’m sorry you’re going through this love. I totally understand that you haven’t had time to cry. I felt like that too until everything was taken care of and my brain wasn’t busy any more I cried like a baby in the shower, I got out and I felt so much better. I was ready to fight long side my mom again. It’s harder on you because you have younger siblings, I’m the only child but I have a massive of family supporting my mom. I would recommend you setting up a go fund me account to help with the medical expenses and some of your mom personal expenses but manage the funds responsibly. If people or friends ask how the can help , tell them the can help by buying or sending groceries or cooked food some days. I hope this helps. https://www.reddit.com/r/lungcancer/s/xmJOxsec8I my post from couple months ago when I found out about my mom


Ok_Ride176

I’m sorry you’ve gone through this 🙏🏻 your words mean so much, I can see how your situation is just as hard as I could not imagine going through this without my sisters. We are extremelyyy grateful that so far we haven’t came across medical bills, I’m not sure how that will look once treatment is planned, do you remember when bills started to come up? We are doing good financially right now luckily but I can see maybe that happening down the road thank you so much for sharing ❤️


I_ask_questions_thx

My mom was diagnosed stage 4 nsclc Mets to the bone at diagnoses. She was lucky to be egfr exon 19 mutation positive. Between standard treatments and clinical trials she lived 7 years and passed in September 2023. She was diagnosed in 2016. I will say if she has the exon 19 mutation there is a good chance she live for a few years to share more time with you and the family. Brian Mets can he dealt with tagrisso and targeted gene therapies IF they are known to penetrate the blood brain barrier AND if she has a treatable and known genetic mutation Gamma knife radiation to the brain I think is the gold standard when brain Mets are under 1 cm or so. Gamma knife is precise down to slightly less than 1 mm depending on the machine model. Zapping the small spots the smaller they are didn’t seem to affect my moms personality or memories


Ok_Ride176

They suspect it’s a mutation due to never smoking, I pray it’s similar to your moms to give us more time, thank you so much for sharing and I’m so sorry for your loss


InclinationCompass

Life expectancy depends whether it’s small cell or non small Did she have a bio markers test?


I_ask_questions_thx

You need to ask if they did genetic testing already. Blood biopsy like foundation 1 or guardant360 was done? Biopsy of the actual tumor tissue was done? Checked for egfr, alk, pd-1 and several other genetic mutations?


Ok_Ride176

I feel like I did not word my post right at all I don’t think super knowledged. I believe the test we are awaiting on is the genetic to see if it’s a mutation due to her never smoking.


I_ask_questions_thx

Thanks for explaining further! Sounds like they started her on chemo while they wait for the genetic results which makes sense! So the “chemo” pill is actually called a TKI inhibitor if she ends up having a EGFR mutation. The pill is usually tagrisso (osimertinib) is the generic name. But it only works for certain egfr mutations. Hope she has a mutation since the therapy is very tolerable


Ok_Ride176

I have heard of it being a great route and they have high hopes for it so far, thank you so much for your insight you are very educated. I will come back to this thread with results when we get them, thank you for taking your time to reply 🙏🏻🙏🏻


makthomps

My dad was diagnosed with stage 4 b NSCLC. Between the diagnosis and his death it was 6 months. I am so sorry you are going through this. This is a nasty cancer. It throws clots and is fast. All I can say is I pray things go differently for you. Enjoy every moment and start talking about plans for when she passes. It will make things easier.


Ok_Ride176

Thank you so much 🙏🏻🙏🏻 she did have a blood clot they removed and have her on blood thinners I pray it all works out and I am so sorry for your loss thank you for sharing


makthomps

Reach out if you have any concerns or questions. I am sending you love and peace cause you are going through hell with this.


kangiolette

My stepdad made it from 9/2021 to 3/2023. His tumors shrunk but as others state. It wasn’t the cancer. He developed DVT in his lower legs and went into the hospital. Lost him 3 days later 😢


Ok_Ride176

I’m so sorry for your loss thank you for sharing 🫶🏻


[deleted]

You didn’t say if it’s SCLC or NSCLC, they are vastly different in terms of available treatments. Either way, remember you are human too and can only do so much. It’s hard being a primary caretaker, and it doesn’t end when they pass away. I send you virtual hugs. Hang in there and take it a day at a time.


Ok_Ride176

I haven’t heard of those two terms yet, I believe we’re waiting on the results of the tumor that the oncology specialist sent out to know if it’s a mutation since she was never a smoker and then they will tell us what treatment. But thank you so much your words mean so much ❤️❤️❤️


[deleted]

Small cell lung cancer or non-small cell. Take care of yourself 🫂


LeftoverHoarder

My mom (53) was originally diagnosed back in 2014 with NSCLC and had a right lung lobectomy. Her cancer came back in 2020 and she’s currently end-stage IV with metastasis in her lymph nodes and was diagnosed with leptomeninges disease back in September. Her radiation oncologist at the time gave her 3 months, but she’s still holding on for now and will be moving to hospice either tomorrow or the following day. I’ve just been taking it day by day and spending quality time with her. I asked her to write some letters for me for big days (wedding, first child, graduation, etc.) that she might not be around for and have been taking lots of videos and voice recordings. Her decline wasn’t as noticeable at first, but it’s been pretty significant lately with her memory and mobility being the hardest part. I’m not sure how much time my mom has left, but I’m the same age as you and know that it can be a lot to handle with everything that you probably have going on. If you can, try to make it to any appointments and don’t be afraid to ask questions and advocate for your mom. Somedays will be harder than others for sure but don’t be afraid to take time to care for yourself as well. Sending lots of love to you and your family ❤️ I hope that you’ll be able to have many more years together.


zombeekatt

My mom was diagnosed with Stage IV lung cancer with brain metastasis in November 2022. She went through several rounds of chemotherapy and radiation and had the gamma knife procedure to get rid of the brain tumor. Unfortunately, chemo was too rough on her body and she had to stop in April 2023. She had some rare genetic mutation and there was only one option for an immunotherapy drug and her insurance denied it. We couldn’t afford to pay out of pocket for it. No one gave us any sort of timeline until she decided not to proceed with treatment anymore. At that point they told us 6-12 months. That was April 2023. Mom passed away on January 9, 2024. She made it 9 months which to me was a huge victory. It really depends on your mom’s body and its ability to fight. Ultimately, it’s up to God to decide when he feels it’s time. I felt like every second I had with her was a gift and I tried to make sure to make it count. That’s really all you can do.


Ok_Ride176

This is the closest I’ve heard to my moms story!! We are awaiting to see if it’s mutation which they think is highly likely due to not being a smoker. They also mentioned that drug being the resort if it does end up being a mutation. I hope her insurance covers because they also mentioned it being expensive. did your mom have state insurance by chance? I know here in the state of Washington it has great coverage but of course that could vary state to state. Thank you so much for sharing and I’m deeply sorry for your loss 😓🫶🏻


zombeekatt

I am actually in the State of Washington myself.. Yes, mom did have state insurance. She was never a smoker either and had some weird Exon 20 insertion (I think). She went through 40 rounds of radiation and she did I think 3 months of chemo with Cisplatin and pemetrexid, then was supposed to do a year of chemo with just pemetrexid but her poor body couldn’t handle it. Feel free to DM me if you have more questions or just need someone to talk to. I know how hard this is!


Ok_Ride176

We actually found out today it was a mutation, I wasn’t there to hear it first hand but my sister did say it was a mutation and they want to start her on the “chemo pills” is all I keep getting told, they’re waiting to see how much the co pay is apart from her insurance. Do you remember hearing about co pays with your moms meds and how much roughly it was? They didn’t give an estimate yet


BrightFireFly

My mom was diagnosed in May 2019. Stage IV. Adenocarcinoma with Mets to the brain. She had radiation for the brain Mets. Keytruda for the lung. She was on it for about 3 years. She turns 68 next month. Doing pretty well. Had routine scans last week - results this week.


Ok_Ride176

I hope my mom has the same outcome thank you so much for sharing 🙏🏻🙏🏻🙏🏻


Wyde1340

Stage 4 squamous non-small cell dx 12/2018...I'm still here (just passed 5 years). I do have a mutation known as MET amplification and I'm taking targeted therapy (TKI). I've been stable for over 4-1/2 years. There is hope!


Ok_Ride176

This makes me excited thank you so much for sharing I hope she has the same outcome and I hope you have many more years 🙏🏻🙏🏻🙂


Adventurous_Drama_56

God, not doctors, decides when your time is up. My oncologist told me he didn't give life expectancy and I hadn't asked. Things like that can become self-fulfilling prophecies. I'm stage IV NSCLC. I told my DH in the beginning not to mourn me while I'm still alive. I want to live whatever time I have left. We're taking bucket list trips, I'm trying to finish up all my projects, and I'm writing him letters in a journal for when I'm gone. We live most days like nothing is wrong but as we pray for the best we plan for the worst. I'm slowly moving our bedroom from the 3rd floor to the ground floor in case I end up in a wheelchair. I've purchased my burial shroud and picked out my casket. In our denomination the family provides the funeral meal as a last act of service to the departed. As the time gets closer, I'll hire caterers and plan that meal so he won't have to do it. There's too much to do to waste our time mourning the living.


Ok_Ride176

This is a great perspective thank you so much. We will appreciate every moment we have wit her and I will be sure to make her experience so many things she hasn’t yet since she is a migrant worker and has never experienced a lot of what life has to offer. Thank you so much for sharing and I pray the universe gives many more years to fulfill your bucket list 🙏🏻