Mally

Brenda, ask your doctor's for suggestions on stopping smoking. There are many treatments available but I would get the ok from the doc before taking any prescription med at this time just to be on the safe side.

Thanks for all of your support.

Hi, Brenda.  I understand your anxiety.  My grandmother had SCLC and had treatment for the entire 13 months she was ill.  But, as Bridget mentioned, there have been amazing advances in both treatment and in management of side effects.  I'm not saying it's all sunshine and flowers, but it's light years ahead of where we were just 5 years ago.  There are so many long term survivors here.  Wouldn't you love to be able to thumb your nose at cancer and say that you won?  We're here for you.  We've walked (or are walking) in your shoes.  

Brenda,
This is a good place to express your feelings. Your concern is a family history and believing family outcomes will occur with your treatment. 
Cancer is a disease of our genes but I don't believe treatment outcomes are strictly governed by genetics. Why?  There have been many advances in treatment and some of these are genetics based. Surgery is a good path to no evidence of disease (or NED) that is our goal. So try that path and see where it leads. 
Let us know how you are when able. 
Stay the course. 
Tom

Thanks for responding. I guess since I have had a lot of bad experiences with family members it causes me to question treatment.

Hi Brenda, 
Cancer is anxiety provoking, no question about it.  There is hope, though. To me, treatment is totally worth it. I just came back from Lungevity's Hope Summit.. I met  a  lot of people who have survived many years with advanced lung cancers and who have good quality of life, too! I wish you could have been there! There were also presentations about advances in treatment for LC. There are so many new and effective ones that old statistics are no longer relevant and people's experiences are different than they were a few years ago. 
I'm fortunate in that my lung cancer was found and treated early (Stage 1A). I had VATs surgery to remove my right lower lobe and my recovery was easier than I had expected. I don't need any further treatment right now, but I'll have regular CT scans to watch for possible recurrences. The info I got at Hope Summit was reassuring. If my cancer does recur, I know I have treatment options and the prospect of continuing an active life.
You've had terrible experiences with family members who had cancer. I understand your dread. But hang in there! Things are different than they were 9 years ago and your cancer experience is likely to be different than what you've seen.
This site is a good place to get info and support. Keep us informed, both of your treatment  and your feelings. 

Hey there! My appt. with surgeon was moved up to this Thursday May 4th. At first I was really glad. But today is a different story. I can feel the anxiety & reality in the fact I have lung cancer. I am upset- now wondering if surgery or treatment is even worth it. I have watched several family members go through surgery & treatments for various types of cancer. My husband passed away almost 9 years ago from lung cancer. He had radiation & chemo right up until the end. Quality of life was poor. My mother & grandfather both died from colon cancer. My Mom lived 2 weeks after diagnosis & my grandfather 6 months after diagnosis. I have had 2 cousins with breast cancer. they are doing well. I guess I am just a bundle of nerves right now. I am not sure of what I want to do. Just thought I would vent & put my feelings out there. thanks for listening to my rambling.

I am Sandra. I live in Phoenix,AZ I was diagnosed in January with Stage 4 small cell lung cancer. My x-ray showed my mass is 5".  My oncologist admitted me into the hospital for my first chemo round. I had my first Pet Scan in Feb, it showed my cancer spread to my lymph nodes , liver. I had an MRI and it showed lesions in my brain. She put me on short term disability. I was out of work for 7 weeks. I am still going through Chemo. I have 2 more rounds out of 6 to go, then another pet scan and then I will find out her plan. A few weeks ago I had another pet scan, it showed progress in my lymph nodes and my liver, but not my lung I sill have a mass and an infection on my lung. I am a little scared what the next plan will be after my next pet scan.  For 10 days I took an antibiotic. I still have the darn cough. Months ago I lost my voice, it is coming back slowly.
I have the chemo side effects and the weirdest thing is the weekend before my chemo treatment I get really bad cramps on my butt cheek so horrible I cry for days. I told my Dr, she thinks it could be not enough electrolytes. 
I have been back to work a month now. I am still tired every day, I get  tired walking but I make myself do things  and of course some days are better than others. I had to come back to work, being home was driving me crazy and of course financially. 
I have a great support system, my boyfriend is the best, my family and friends.
Sorry for going on. That's some of my story.
Sandra Z
 
 
 

Hi, Sarah.  Recurrences suck, but there's always a silver lining: you are ALIVE to even have a recurrence.  You've beaten cancer twice so let's do it again.  I'm fighting a recurrence in a lymph node that couldn't be removed because of its proximity to the aortic arch.  Let us know how you're doing and, if you feel comfortable, share your plan of attack.  

Sarah,
I do absolutely understand. I had 4 recurrences after treatments. Each one felt like an emotional punch in the gut. 
I wish I had a magic pill that would wipe away this madness.  You know the drill.  A treatment plan will emerge and you'll need to suite up for the beat lung cancer game.  
Welcome back and stay the course.
Tom
 

My name is Sarah. I was first dx with Stage 1b nsclc  in 2008. I had an upper left lobectomy on April 8th 2008. No chemo. I have been clean for the last 8 years, then this year it came back. My PCP ordered a blood test that my oncologist didn't order. I had stopped going to my regular oncologist by this time and just having my PCP run the needed tests. Well, the CEA levels were a little high, so he said lets repeat again in 4 months. Higher again, CT scan next, small spot on right lung. PET scan came back positive. Small tumor located near right pulmonary artery. Had to find a new oncologist, since the one I had been seeing for over 25 years was finally retiring (had gall bladder cancer in 1992). Met with new oncologist at he U of Michigan Comprehensive Cancer Center. Tumor's small, lets just wait and  watch it. Come back in August. Still had to go to the tumor board. Call the next day, board disagrees, more tests and have to meet with a surgeon. They can't biopsy the tumor because it is so close to the artery. So, I went from relief to dread in less than 24 hours. I am an emotional wreck. For whatever reason, it is so much harder this time. I'm scared. Everyone keeps telling me how strong I am, when all I want to do is sit down and cry. I know that you will understand. Thanks for letting me vent. 

Hi Cindy,
Thanks for your suggestion. Yes, I've had a biopsy (many, in fact) and the diagnosis is:  primary adenocarcinoma of the lungs, and primary malignant melanoma in lymph nodes.
Originally we thought the lung funk "Larry" was melanoma.  It made sense. I have melanoma and melanoma likes lungs.  But when it didn't respond to any melanoma treatment (while other tumors were) we biopsied it and found out that it is adenocarcinoma of the lung. Larry the lung tumors eviction is in a week.
Julie
 

I would think only tissue samples would tell if they are in fact two different primary cancers or if one is a metastasis of the other.
just a thought,
Cindy

Julie,
I can't give you first hand knowledge because my two cancers were the same type - Squamous cell skin, treated surgically, and Squamous lung, treated with concurrent radiation and chem, then surgery, then chemo (twice) and finally SBRT. 
So I don't have a clue. We have folks on the Lungevity Facebook page that have experienced concurrent treatment of two different types. Search Lungevity on Facebook to link up. 
Stay the course. 
Tom 

Good morning, Julie. I had lung and thyroid cancer; thyroid cancer was found when doc was looking for lung mets. Because there had been no spread of the thyroid cancer, I had a thyroidectomy and that was the extent of my treatment. I wish you the best.

Great way to put some fun into not so great chemo ....way to go !!

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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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Judy,
Unfortunately, I experienced a troublesome delay waiting for my first treatment. First a week long in hospital scan and test session, then a 10 day wait till first in office consult with my oncologist. Then his treatment plan was surgical resection, so about 10 more days waiting on the surgeon. The surgeon declined to operate and that resulted in an additional delay. Starting treatment in my experience meant waiting and frustration. So I understand. 
But, once treatment started, delays ended. Treatments went like clockwork. So you have that to look forward to. 
Stay the course. 
Tom

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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Hi Sandra.  I hope you find this forum useful.  Everyone is helpful. We understand where you are. My mindset is to treat lung cancer like a chronic disease with the occasional flare-up.  I was diagnosed in early 2016 during surgery to remove half of my left lung.  We later discovered that the lung cancer had spread to my thyroid, and I also had a separate thyroid cancer.  My treatment for the lung cancer was cisplatin and pemexetred.  I didn't have any treatment for thyroid because they got it all when I had a thyroidectomy.  I was NED for the lung cancer from July to the end of February this year.  I'm in the middle of 6 weeks of radiation and chemo.  Once I wrap this up, I move on and live 90 days at a time between scans.
Please let us know how we can help you walk this path.

Welcome Sandra!
We'll give you a straight story but be mindful, we are not doctors. So don't consider anything we say as medical advice. However, that said we are the lung cancer experts, not by education but experience. 
So, let's start with the burning arm symptom. You had cisplatin but didn't mention taxol. Was that your second pairing. If so, taxol is known for causing peripheral neuropathy in the feet and hands but sometimes this extends to legs and arms. In some folks, it is a temporary symptom. My "taxol toes" (our informal name for burning feet) has been around for 13 years. After a total of 18 taxol carboplatin infusions, my doc says it is likely permanent. Read my blog entries in "Stay the Course" and I talk more about how I manage my symptoms on that blog. Unfortunately, I can't link the specific blog because I'm in an airport on my iPhone. 
About cure. We don't use that word because lung cancer often recurs, even after 5 years of "no evidence of disease" or NED which is the term we use. I also wrote a blog on lung cancer persistence (again, can't link to it but you'll see it on the blog tab). 
And survival projections are little more than educated statical guesses. My probability of survival was less than 5% at 5 years and I once had a projection of 6 months to live. Thirteeen years later, I'm still here. Again I have a blog explaining survival statistics and why they are so innacurate. 
Most important, many of us are 2 cancer survivors. I've had both squamous cell skin and lung cancer. Perhaps most important, if I can live, so can you. 
Any place is a good place to introduce yourself.
Stay the course.
Tom 

Dan,
Typing on one of those impossibly small IPhone keyboards so I be brief: met sucks!  
Well you have cancer in the lung and that qualifies for membership. We may struggle with chemistry but we can google. Hope radiation both conventional and stereotactic is being considered. 
Stay the course.
Tom

Hi Ktamdgirl,
I'm sorry about your mother's diagnosis. Like Tom says, you're at a wonderful facility for treatment. 
February of 2016, I was diagnosed with Stage IIIA adenocarcinoma. The primary tumor was in my right middle lobe and only measured 13mm (1.3cm), and three mediastinal lymph nodes were positive (I'd have to check my labs to recall the specific ones). 
I ultimately received treatment similar to your mother's current plan. My radiation was received concurrent with chemo (same combo of chemo as your mom), because I had no pre-existing barriers. Also, I was initially a non-surgical candidate, so my chemo was split during treatment. I received two rounds pre-surgery, and two rounds post-surgery. 
I like Tom's description of the doctor's ganging up on one another. That is similar to my team as well. Sometimes the oncologist and radiologist gangs up on my (extremely talented) surgeon to operate on something, and he concedes, but then Dr. Surgeon (who is very lung cancer oriented), turns around and convinces Dr. Oncologist to put me on the TKI that they were hesitating on. 
ANYWAY, I'm digressing. My point is, they have a plan for for treatment, and depending on variables, the plan might change. For example, if your mom needs an extra break in between chemo sessions to recover her blood counts, they already know it's a possibility. If she needs extra help working through the nausea and fatigue, they've got resources for that. 
Sorry I have to cut this off, have to leave for an appointment. You are very fortunate to be at a fantastic treatment center! Hope to hear from you soon! <3
 
 

Kyamdgirl, welcome here. 
Thirteen years ago I was initially diagnosed with stage IIIA Squamous cell NSCLC. My scope did not show lymph node involvement but I was restaged IIIB due to the size of my tumor. Initially, the surgeon declined to operate claiming the tumor intruded too far into my trachea. 
My oncologist and GP ganged up on him to treat aggressively. I had 30 doses of radiation with weekly taxol and carboplatin chemo. That shrunk the tumor enough to allow surgery (right pneumonectomy) but I had post operative complications. 
Then after the complications were resolved scans noted tumors in my left lung. All I had was chemotherapy until the surprise FDA approval of stereotactic body radiation therapy (SBRT) that fried my recurring tumor. 
So similar but no lymph node involvement. Treatments: first line conventional radiation with adjuvant chemo,1 years worth of surgery (long story), second line chemo, third line chemo with an addition of Tarceva, and SBRT. Lesson from my treatment: lung cancer is persistent and your mom needs to be more persistent. 
I don't know the order of treatment matters and given your mom's autoimmune complications holding radiation in reserve might be a good thing. She is at one of the best hospitals for treatment, especially given her complications.  
You'll have more questions and this is a good place for answers. 
Stay the course. 
Tom

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