Suzanne

Hi Carol

I was just diagnosed stage 4 nsclc adenocarcinoma in March of this year. I have had 3 treatments of Keytruda and radiation to my spine and lung. I just wanted to tell you that this forum is so inspiring and makes me believe I will live forever! My dr gives me a year, but I can't wait to prove him so wrong!
I will pray for your husband and you because I truly believe none of us will get out of this without God's strength.
My Dad had several cancers in his life and he lived to 95, and did not die from cancer! He always said never give up. NEVER GIVE UP!

Suzanne




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Hey Carol - As a "rookie" in this fight with cancer, I have also got many questions, but I can promise you this, not only do you have a vast amount of knowledge within this site; But, asking us to hold you and yours up in
PRAYER, well, let me tell you this, you have now jumped into "Daniel and his Lion's Den" for the prayer warriors to become engaged!

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Thanks so much, Suzanne. You stay positive as well. I can't believe a doctor would presume to give you a limit to how long you're going to live. I'm sure with your attitude you will prove him wrong. I'm on another site, Inspire, and there are many people there who had the same diagnosis and are living well past a year ... some 10 years so far. And with all the new drugs, I expect you and my husband to be here a long time.  Our biggest concern right now are his kidneys... He will be unable to continue with the Alimta if we can't get his creatinine level down. He's drinking as much water as he can and is also getting infusions of water, but it still stays stubbornly high. I'm looking for diet suggestions now to see if maybe that will help him. Thanks for your reply!  
Carol 

Great news!


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I had my end of chemo scans done yesterday and was getting the results next Wednesday but went to my gp to get some scripts and he had a copy of my results so IM CANCER FREE ....i was so happy i was crying walking around the supermarket trying to text my kids through watery eyes ...
 
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Thank you for the words of encouragement. Judy, yes I did read your posts and instantly realized how similar our stories are. I am definitely looking to my Heavenly Father to give me the strength to battle on. I'm just so tired. This week I have a PET scan and brain MRI. My oncologist said we need to know those results before we can set a treatment plan. But right now it looks like chemo and radiation. I meet with my "team" on Thursday. And thanks Tom you are right about reading statistics. And I am encouraged by your living! 

The up side of this Susan is
YOU WILL NOT HAVE TO SHAVE YOUR LEGS OR UNDERARMS !
Donna G
 

Recent brain scan shows no mets. Port is in place without any problems. Radiologist called and they were able to make a plan to do SBRT on all 3 of my tumors. Which means chemo probably eveey 3 weeks instead of every week. Thankful to hear all that.
Judy M
 
 
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Hi Judy,

I am going through the same thing. But after prayerful consideration I realized that I am glad my doctors have waited for all results and had much discussion about me before doing anything. I can't believe how much worse I feel since March 15 (diagnosis day) but I am supposed to start on Keytruda tomorrow. We'll see. Praying for you.
Suzanne


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Well, I only thought I was starting treatment. They did C.T. and set up for SBRT last Monday and said they'd call me when they had the plan ready. Waited all week and called them Friday. Said they'd been working on my plan all week and would call me next week. Is this normal? It's been 6 weeks since I was diagnosed and I've yer to receive a single treatment. I'm praying for patience
Judy M

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Finally got a date to start treatment. Will begin next Tuesday. Learned why the Radiology Oncologist didn't want to do the stereotactic surgery on all 3 nodules as the Med. Oncologist originally wanted to do. He felt that it would be too toxic to do stereotactic concurrent with chemo. But, from what Tom has said that may still be an option down the road if necessary. So, stereotactic on the 1 nodule in left lung which is the largest and then radiation concurrent with carbo/taxol on the 2 in the right which are both less than 1 cm. Was looking at my health record on an app my hospital provides the other day. Rather than saying I have stage IV it reads that I have stage I left lung and stsge III right lung. Find that interesting. Has anyone else seen that? Hope you guys are all feeling good today. Still praying for you Suzanne.
Judy M
 
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Suzanne,
SBRT as I know it was once confined to small intact tumors and in my case a single tumor in the lung. 
I've been reading about doctors who are now using SBRT for multiple tumors and in multiple locations in proximity -- say 2 tumors, 1 in each lung. That means as a treatment for stage IV LC. Most of my reading has been papers in the journal of oncology and NIH literature. 
I'm not sure SBRT under those circumstances is considered a standard of care, yet.  But it looks like things are moving that way and if that is the case, and you are in the study population, then SBRT worked for me. 
I thing I sent you some citations a while ago. Can't do links with a cell phone. 
Anyone else know about SBRT use on stage IV LC?
Stay the course. 
Tom

I was diagnosed with nsclc stage 4 adenocarcinoma 2 weeks ago after a pet scan showed the lung cancer had spread to my spine. I was asked to be part of a clinical trial for sbrt but I have since seen it as a standard treatment for many people on here. I am having a difficult time figuring this out. Any help would be appreciated.
 
 
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I don't know anything other than it is the colon cancer.  They are still doing some test to help determine treatment.  I'm trying to get an appointment for add early next week as possible.

Hello everyone I finally created an account lol. I'm a 2 1/2 year lung cancer survivor and THERE IS HOPE!!! I've been a part of LUNGevity since my lung cancer journey began and it's a great organization.
 
I was diagnosed November 20, 2014 with stage 3B NSCLC adenocarcinoma ALK +, I stood positive, held on to the word of God and fought a brave fight and won!! It wasn't easy but it is POSSIBLE through the word of God! I was on Dr. Phil and shared my story, I've traveled and shared my story, I'm a lung cancer advocate and now I'm an owner of my very own crossfit gym. So remember my lung cancer brothers and sisters there is HOPE!!
 
DON'T EVER GIVE UP!! No matter what they tell you!!
 
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I'm sorry to hear about your upgrade, but glad to hear you can take Keytruda. Have heard of some good results with that. Telling family is very difficult. I also have 4 grown children. We'll keep praying for one another and trusting God's heart. Bless you.
Judy M

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Thank you for the words of encouragement. Judy, yes I did read your posts and instantly realized how similar our stories are. I am definitely looking to my Heavenly Father to give me the strength to battle on. I'm just so tired. This week I have a PET scan and brain MRI. My oncologist said we need to know those results before we can set a treatment plan. But right now it looks like chemo and radiation. I meet with my "team" on Thursday. And thanks Tom you are right about reading statistics. And I am encouraged by your living! 

Tom,
Thank you. I found those and have read 1 of the articles. Will read the others. It does concern me somewhat that there seems to have been some disagreement between my Medical Oncologist and Radiology Oncologist on how best to treat me. Seems they brought on another Radiologist to help plan the radiosurgery. The way it was explained to me today is that they're treating each lung as a separate cancer. Rather unique way of looking at it. But I had prayed and decided whatever plan was mapped out I'd accept as God's will. And so far as I can tell there are no guarantees with any treatment plan when it comes to this anyway. You just soldier on. Tried to find your book to read but only found it available on Amazon for Kindle. Is there anywhere I can get another format. Thanks for being there for all of us.
Judy M

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Suzanne
Thank you so much. I'm sorry to hear that you"re sad. It seems the longer time I've had to pray and come to accept my diagnosis the easier it has become emotionally. I'm a big fan of Elizabeth Elliot. She counseled that when something really awful happens you should think of what you'd be doing if it hadn't happened and do that. She called it 'doing the next thing.' That has helped. And doggedly turning my mind to good thoughts each time I start to obsess over the situation. Which is so easy to do. Especially on days that I see a doctor. That doesn't change anything. Just ruins the good time I could have had if I wasn't doing that. And my obsessing won't change anything. I guess I'm saying that I'm just trying to accept the things I can't change and keep a quiet mind. I can't control what the disease may do to my body, but with God's help I can control what I let it do to my mind. I'm going to pray for you every day. Let me know what you learn about your planned treatment.
Judy M

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Judy, I'm glad you have a plan now. God bless you and keep you in His care. Keep updating! I will know more about my plan on Thursday. I am really sad.

Just saw Med. Oncologist. The original plan was radiosurgery on all 3 lung nodules plus mild chemo. New plan is radiosurgery on largest (3cm.) Nodule in left lung and reg. Radiation + mild chemo on 2 small nodules (less than 1 cm.) In right lung. The reason being that the Radiology Oncologist doing the planning didn't think he could do radiosurgery on the 2 in my right lung. Could that be because they're too small? Glad the plan is now in place and should be able to get started next Monday. That's the good news. Not so good news is that the cancer tested negative for all the targeted therapy markers. Immunotherapy testing isn't in yet. Feeling good today and thankful for that. Hope the rest of you guys are also.
God bless you all.
Judy M
 
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Thank you for the words of encouragement. Judy, yes I did read your posts and instantly realized how similar our stories are. I am definitely looking to my Heavenly Father to give me the strength to battle on. I'm just so tired. This week I have a PET scan and brain MRI. My oncologist said we need to know those results before we can set a treatment plan. But right now it looks like chemo and radiation. I meet with my "team" on Thursday. And thanks Tom you are right about reading statistics. And I am encouraged by your living! 

Suzanne
Welcome. Our stories are SO similar. Which you know if you've read my posts. I also just recently joined this group and it's been very helpful. I was diagnosed with breast cancer February last year. Had surgery and radiation and everything was going great. Then developed pneumonia in Jan. which eventually lead to disgnosis of stage IV adenocarcinoma in March. Not a spread of the breast cancer, but an actual primary lung cancer. My birthday is also in March and had the P.E.T. scan the day before my birthday. I also quit smoking 17 years ago. Ironically, if my research is correct my cancer is the type nonsmoking women usually get. This certainly wasn't a part of my plan for my life. I'm still waiting to get started on my treatment. See my Oncologist again tomorrow, so maybe things will get rolling then. I've been ( as another member put it so well) freaked out off and on. It's a stunning thing to get hit twice with 2 separate cancers. But my Oncologist's N.P. says both are adenocarcinomas. I didn't know that. Don't know that I have any great advice or info. But I can certainly assure you that you aren't alone. Right now my faith in God is holding me together. It goes like this: I freak out, I run and cry out to Him in prayer, He gives me peace in my heart and mind, repeat. Then repeat again. He knew this was coming and I'm trusting that though it wasn't part of my plan it is part of His and He knows what He's doing. Please, keep us updated on how things are going with you. I'm so glad you've become part of this group! No the reason for joining of course, but the choice to join and share your journey.
Judy M.

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Suzanne,
Ok - here is my first and best shot at help:  I was diagnosed 13 years ago with Stage 3 NSCLC and I'm alive. The obvious conclusion is if I can live so can you.
There are so many things to communicate.  There are vast differences in terminology and treatments between lung cancer and breast cancer.  It wouldn't hurt to read about adenocarcinoma here.  
You mention Stage 3 and adenocarcinoma and that suggests you've had a biopsy.  If that is the case, are they checking the biopsy samples for biomarkers? If your tumor displays certain markers, you may be able to receive targeted therapy.  Here is an explanation.
Stay away from survival statistics.  If you must read something about survival, read this.  Also listen to Gould (linked in the blog) and start working on that sanguine personality.
You'll likely have many more questions as you proceed with treatment plan design and treatment and this is a good place to ask.
Stay the course.
Tom

Hi Suzanne.  I am a stage IV adenocarcinoma patient.  I was diagnosed in February 2016.  I made it 12 months before my first recurrence and my recurrence (as far as a recurrence goes) is minor.  I started treatment today.  Smoker, non-smoker - doesn't matter; lung cancer doesn't discriminate.  I just had my second brain MRI and that is the one that scares me, but my oncologist says the medical field is having great success with brain radiation. That said, fingers are crossed and prayers said for clean scans so you can move forward with treatment.