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Persistent tumor


AngelL

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I'm so scared. Diagnosed 2020 with stage IV NSCLC. I've had 15 rounds of chemo, 5 rounds of Gamma knife, a wedge resection on my lung, a craniotomy but I've never felt this down. I have a tumor inside my spinal column. The doctors had gotten my cancer controlled and this is the only spot in my body atm. Great news but I've had radiation to it in May, a laminectomy in September , and now it has grown back again. Three times in 4 months and now I have to get 5 rounds of radiation to it. 

I'm scared about how quickly it is growing and how it isn't responding to any treatment. I've lost mobility in my legs but can walk on walker which surgeon says I should be thankful for. I've been working hard at PT but now feel like what's the point. Ugh.

  I'm feeling every emotion all at once. This will be the last series of radiation I can get in this spot due to possibly damaging spinal column even more. I could lose even more mobility and body function but if I don't get it out I know the pain I'll be in and ill die for sure quickly because of its location C7- T1 it's damaging nerves that control my arms, legs, bodily functions.

I have a tint bit of hope. We got our first real tumor Sample and it's being genetically tested and hopefully there is a better targeted therapy for me but....? 

I don't want to be bed ridden with a diaper and I also don't want my child, 9 yr old, watching me painfully die over the next 6 months. Prognosis is 1.5 years which I have repressed and can't even process. I know I'm going to do it but my biggest fear is traumatizing my child if I die and even if I live and he has to see me very sick. I've never dealt with death and kids. Idk how much or what to tell him or if I shouldnt say a thing and hope for the best. I also have a 22 year old son. What do I say to them? 

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AngeIL…I am so sorry to hear of the situation you are in. You have been to hell and back it sounds like. Hopefully they can find a targeted therapy that will work. I hope that these series of radiation will do the trick. Praying for you and your family.

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Hi AngeIL, I am very sorry to hear of your setbacks and totally understand the fear and sadness you must have as a mom of young children.

I wonder if you have sought a second opinion. Maybe a fresh pair of eyes may come up with other treatment plans/options? Why have they not done biomarker testing much earlier? Dd your doctors look into clinical trials that may be suitable for you?

The pathology sample should give a good idea of what you are dealing with and hopefully it will come back with an actionable targeted therapy.

As for your kids, I was told at my cancer centre that I should be honest with my kid (6 years old) and I told him about me being sick and having bad cells that I need to kill through treatment etc but did not elaborate since he is too young. It is great that your 9 year old has a 22 year old sibling for support. Maybe it makes sense to tell the older child about your progression (I assume they know you have cancer?) but I would seek professional help for that process (councillor, psychologist) which probably will help you too as you fight this disease. Kids are resilient so do not beat yourself up about this and focus on spending as much time as possible with them and making loving memories instead. I still panic when I think about my cancer coming back and currently feel double worry as my husband will undergo a skin biopsy to see if a mole he has is malignant (I feel like screaming sometimes). Life is so unfair but we have to keep fighting. The first thing we did when I got diagnosed was make a will, including instructions on guardians. Funnily enough, completing these documents made me less panicky and a bit more at peace, it was the only thing I could control besides choosing my medical team.

Please do not lose hope. So many people seem to be told they have X time to live then survive for much longer. No one knows what will happen and this is part of the misery of cancer but try to hold on to hope and push for aggressive treatment and comprehensive biomarker testing. Keep us posted!

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We have been unable to successfully get enough tissue for a biopsy until this surgery. Before everything they've removed has been scar tissue. My Oncologist put me on tagrisso because of me being young female and the brain Mets all pointed toward a certain biomarker, EGFR. My Radiology Oncologist gave me the prognosis, she mostly treats my brain Mets and now the tumors in my spinal fluid. I also have another Oncologist who is a lung cancer specialist who treats my lungs and the rest of my body. I see him next Wednesday and I'm hoping for more positive news from him. 

My kids do know I have cancer and am getting treatments. I of course give my youngest a more watered down version of things but I haven't told anyone except my husband about the prognosis of a year and a half. I scared to say it out loud or believe it. 

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I'm sorry to hear that you're going through this especially with a young child. Survival rates are just averages and nobody can predict how long you will live. While my mum has never been given a prognosis, one doctor said her cancer was incurable, another said they were aiming to cure her cancer. I once spoke to this awful nurse who said that people with stage 3B lung cancer tend to live about six months but almost three years later and my mum is still alive! My cat was diagnosed with two brain tumours and was given a few weeks to live but he lived for over three years which is the equivalent to 15 human years and he was a very old cat! My neighbor's dog was diagnosed with a tumour and should be dead but he's alive and doing well! 

I agree with LilyMir about seeking a second opinion. A different doctor might have more specialised knowledge of how to tackle this tumour. Or perhaps your current oncologist might also have some ideas especially if they're testing your markers. Hopefully the results from the markers will lead to you being put on a different treatment that is more likely to work. Targeted therapy and immunotherapy can be very successful. 

I'm keeping you in my thoughts and I'm praying that you'll get some good news. Keep us updated xx

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How long have you been on Tagrisso? 

I would ignore averages and statistics as they are only useful on a population level. Many are given dismal prognosis but lived so please try to focus on the next steps and possible new therapies to try. Glad to hear they got a good sample finally, hope you get better news soon.

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Angel,

Lung cancer is tough going and a short life projection does not ease the tough going. But, consider your 1.5 years is a projection and like all projections it is subject to a margin of error. I've had many projections of early demise in my 18 years of survival history and for a while I believed them. This added depression to the medical challenge of battling lung cancer.

I did not go easy into treatment for depression. It took me a long time to admit I had that kind of a problem. I'm a retired soldier and thought I was mentally tough; tough enough to endure any threat without fear. I held on to that belief far too long and missed many opportunities for experiencing the simple joy of living.

My reality is, now, a belief that lung cancer treatment often extends life. How long is not the right questions. A better question is what am I going to do with the extension. I've learned to forget the past, declare the future irrelevant, and simply live in the day. In my day, I pay attention to the little wonders of life. I search for joyful events, little things that happen in my day and when I see one, I celebrate it. I don't know how long I will live, but I know I will appreciate each day.

As regards sharing information about your lung cancer with family or friends, that is a dilemma that only you can unravel. My wife knew everything. In fact, during treatment, she was the level-headed rational thinker asking terribly preceptive questions about treatment opportunities and outcomes. My daughter has a very strong character, having survived two brain tumors, and she knew the good, bad and ugly. Each of my 3 brothers processed my disease differently. One didn't want to know anything so I had to tailor the amount of information I shared with him. My point is I had to take stock of each person in my family and consider how they would process my lung cancer uncertainty, then tailor information about treatment and outcomes. You may find your situation similar.

You and I share a disease. We might share outcomes. Sharing outcomes is more than possible, it is highly probable. Leave statistics to the statisticians. Focus on what you can control, with absolute certainty, and for me that is a slice of 24 hours starting with each day I  wake from sleep.

Stay the course.

Tom

 

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3 hours ago, LilyMir said:

How long have you been on Tagrisso? 

I would ignore averages and statistics as they are only useful on a population level. Many are given dismal prognosis but lived so please try to focus on the next steps and possible new therapies to try. Glad to hear they got a good sample finally, hope you get better news soon.

Thanks for the encouragement. I've only been on Tagrisso for 4 months total. I started in May but had to stop a bit while healing from the laminectomy. Pretty sure the tumor was there before I started Tagrisso it was just hiding in between the nerve stems in my spinal column so I'm trying to get back to a positive mind set. I told that doctor that I wanted to be on the hospital's billboard when I beat her prognosis. 

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3 hours ago, Tom Galli said:

Angel,

Lung cancer is tough going and a short life projection does not ease the tough going. But, consider your 1.5 years is a projection and like all projections it is subject to a margin of error. I've had many projections of early demise in my 18 years of survival history and for a while I believed them. This added depression to the medical challenge of battling lung cancer.

I did not go easy into treatment for depression. It took me a long time to admit I had that kind of a problem. I'm a retired soldier and thought I was mentally tough; tough enough to endure any threat without fear. I held on to that belief far too long and missed many opportunities for experiencing the simple joy of living.

My reality is, now, a belief that lung cancer treatment often extends life. How long is not the right questions. A better question is what am I going to do with the extension. I've learned to forget the past, declare the future irrelevant, and simply live in the day. In my day, I pay attention to the little wonders of life. I search for joyful events, little things that happen in my day and when I see one, I celebrate it. I don't know how long I will live, but I know I will appreciate each day.

As regards sharing information about your lung cancer with family or friends, that is a dilemma that only you can unravel. My wife knew everything. In fact, during treatment, she was the level-headed rational thinker asking terribly preceptive questions about treatment opportunities and outcomes. My daughter has a very strong character, having survived two brain tumors, and she knew the good, bad and ugly. Each of my 3 brothers processed my disease differently. One didn't want to know anything so I had to tailor the amount of information I shared with him. My point is I had to take stock of each person in my family and consider how they would process my lung cancer uncertainty, then tailor information about treatment and outcomes. You may find your situation similar.

You and I share a disease. We might share outcomes. Sharing outcomes is more than possible, it is highly probable. Leave statistics to the statisticians. Focus on what you can control, with absolute certainty, and for me that is a slice of 24 hours starting with each day I  wake from sleep.

Stay the course.

Tom

 

Thank you for your service and also for the Great advice. So happy that you have beat the odds over and over. At first the 1.5years just kept repeating in my head on loop. I was in panic mode trying to think of some meaningful, change the world  thing I could do in such little time. Now that Ive  calmed down a little I've found myself outside enjoying simple things like a butterfly passing by or just appreciating snuggling with my child on the couch more than before when I thought I was invincible. I'm going into this radiation with only positive thoughts. That's all I can do. 

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Angel

I'm so sorry to read how you feeling please don't give up fighting I know how hard it is especially with family,you will beat this and everyone is right statistics are not reality, I sincerely hope you feel better soon please take care Justin x 

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Angel,

You've heard some really good things and I applaud you on looking for the beauty of the moment.  Whenever we live in the future we are filled with anxiety...it's true enough to be a maxim.  Lamenting the past leads to depression.  So, the only smart place to stay is here and now.  I'm thrilled that you are doing that.  The butterfly, a child's questions, the warmth of a sunny day on your face are the kind of things I held on to when I received my diagnosis.  Three years later I'm still here and doing well.  My prayers go out for you.  Please stay connected and ask any questions you may have... you have a ready family of "experienced people" who will support you.

Lou

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Hi Angel - 

As the others have said, you have a lot going on with this diagnosis and I'm sorry. Everything about this damn disease is so frustrating and scary and overwhelming.  It's hard not to be overwhelmed so please keep coming back to ask questions, vent, lean on us, all of it.

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6 hours ago, AngelL said:

I've found myself outside enjoying simple things like a butterfly passing by or just appreciating snuggling with my child on the couch

I think this is also my secret of life with lung cancer. Sometimes things I never gave a passing thought to, give me a sense of joy or peace.

You've been through the mill; of course you're scared. To the best of your ability, refuse to imagine dire situations in the future. One of my rules for myself is, if I hear myself start down the path of "What if...." I need to take myself by the scruff of the neck, give myself a good shake, and go do something that puts my head right.in. the.present.moment. Typically that's something like cleaning the bathroom, which reinforces the negativity of such thinking. ;-) 

I'd like to jump on board the Second Opinion bus. 

I hope you meeting with your oncologist went well. Please keep us posted.

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