RuthieThomas

Good morning!  I am always lifted by the good news and positive outcomes on this site so I'm here to share mine.  Last week's pet scan is clear.  We reset the clock and do this all again in 90 days.  
Tom - I wanted to clarify my comment about my staging. Oncologist didn't change my staging because he later found mets; they didn't know it was there at the initial staging.  I was diagnosed after surgery as IIIa, before the team knew about the metastisis to my thyroid.  Had they known about that, they would have staged my cancer as IV.  So, for statistical purposes, oncologist considers me a IV.  He told me yesterday, though, that there weren't really any statistics to evaluate my case because it was unusual - mets to the thyroid is so rare and it was a distant mets site and tumors were removed at both the primary and mets sites.  He said my 5 year number is 30 to 40%.  I laughed and told him his numbers mean nothing to me - and he agrees - because I've already skewed the stats with the thyroid issue.
I'm looking forward to walking in the Breathe Deep DFW event and have hopefully inspired my family and friends to dip into their wallets.  

Hi Donna!
Sorry this is so late, but I check in so erratically that I miss a lot! Happy, happy belated birthday! My perspective on getting older has certainly changed since my diagnosis...congratulations on one more year of life!
You are an inspiration to me.
Ruthie

Ruthie...thank you so much for your kind words. I could never explain how difficult this is for me. I'm so glad to hear you made it through your treatment. Your story gives me hope that this "new normal" for my mom will pass. I need to look into palliative care. I need help managing her pain. Her life consists of sleeping, eating and taking pain medicine. It's so horrible to watch. She, like everyone else with cancer, deserves so much more! Thank you for keeping us in your prayer and you will be in mine. ~Stacy


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Hi Yovana!
I am also a newbie to this community, although I was diagnosed one year ago today. I'm not normally a "joiner" & hadn't explored the support groups offered locally, but have found much information, understanding & support from the wonderful group of people  here who are ready, willing & able to help in any way they can.
Glad that your cancer was found when it was and you were able to have the VATS procedure; everything sounds great! Take care of yourself and please keep posting! Wishing you all the best.
Ruthie

Hello,
I'm very sorry for the late reply. However, I've been a bit busy lately. 
We're doing great! He finally got the finances to start his treatment and he's not in pain as much as he used to be. And I feel like him and I were able to connect on a whole new level which was great for the both of us. Things are looking good and I hope it only gets better. 

John,
In my long survival tenure, I've often examined my initial treatment decision in terms of your suggestion, avoid treatment and go to Vegas.  I won't to into details  but you can read about them on September 1st on the Amazon Kindle Store.  My book Scanziety publishes (shameless commerce message).  
Here is my evolved thinking on treatment and life.  I now believe that if one chooses treatment, one is choosing life.  That choice implies a decision to do something with the life we are granted.  None of us, cancer survivors or not, know how much time we have.  Some cancer survivors get a prediction but it is only a prediction and in my case in turned out to be an irrelevant prediction.  But, this is an evolved philosophy, looking retrospectively.  It is not the way I behaved or thought during treatment.
My treatment was a mayhem.  I completely forgot about the purpose of treatment and got mired in frustration, pain, despondence, and depression.  I know of many cancer patients who trudge that same path.  I lived through it and because I did, I can suggest to folks that cancer treatment does not need to upend your life.  I've watched some who took that advice enjoy life during treatment and enjoy it after.  As your Vegas analogy suggests, joy in living is the objective. 
A take away for you, having read my treatment experience, is how to avoid it.  Early find, easy treatment, high survival prognosis are the opportunities for you.  I'd find it, fix it and finish it.
The support network is hard but here at LUNGevity, we can match you up with a survivor who you can talk to and who understands what you are feeling.  If you are diagnosed with cancer, let me know if you want a in-person support resource.  I can make that happen.  Moreover, there are numerous cancer support group meetings and I've attended many.  I even went to a wedding of two survivors who found each other at a support group.  There are support network solutions.
Stay the course.
Tom

John,
With respect, I disagree.  I've heard and read about people trying to sell "non-conventional", "holistic methods" and the like in my 12 years of surviving this nastiness. I know people who died because they believed enough to try the non conventional.  Re-reading all your posts, it appears you are positioning yourself to peddle unproven methods using this site as a sales platform.
You are saying: "I know for a fact that certain fasts" (classic scam statement), citing "Dr. Valter Longo" (not a medical doctor but a PhD genetics researcher with interest in aging and has two preliminary studies on fasting that he admits are not conclusive) and the "Rife Frequency Generator"(doesn't even work when plugged in) as curative measures.  I'll be frank.  Are you trying to get purchase on this site to offer "non-conventional" or "holistic methods" as a viable means for effective treatment of lung cancer? 
I'm flagging your posts and bringing them to the attention of senior LUNGevity management for review.
Tom

Meloni,
First of all, congrats on the completion of your surgery!  I wanted to address to "boundaries" issue with you. It sounds as if you are one of those people who puts others needs before your own, which can be a beautiful thing, but I feel that there are times when you and your wishes should come first & in my opinion, this is one of those times.
I hope you can get through to your MIL that, although you appreciate her offer, that chemo is easier for you to get through when you're alone. I was that way...I always had a great nap & didn't want anyone there who I felt I had to "entertain"! Perhaps you could suggest that your MIL help in a different way (grocery shop, cook dinner, clean your bathroom), to be helpful, although, forgive me for being blunt, it sounds as if she wants to make herself feel better first & you come in second. By all means, tell your husband that you would rather not have MIL with you during chemo; he needs to back you up on this. 
You have a big enough battle against cancer without also having to battle "helpful" family members also. If MIL gets mad, she'll get over it. Please don't take on her problem & feel any guilt whatsoever...if one of you has to feel upset right now, bettter it be her than you!
As far as the teenager; good luck! I know they can be pretty self-absorbed.If no one else is putting Meloni first right now, then you need to. Please take care of yourself and hang in there! I hope I've not offended you with my bluntness, I tried to be diplomatic, lol!
Ruthie
 
 

Meloni,
First of all, congrats on the completion of your surgery!  I wanted to address to "boundaries" issue with you. It sounds as if you are one of those people who puts others needs before your own, which can be a beautiful thing, but I feel that there are times when you and your wishes should come first & in my opinion, this is one of those times.
I hope you can get through to your MIL that, although you appreciate her offer, that chemo is easier for you to get through when you're alone. I was that way...I always had a great nap & didn't want anyone there who I felt I had to "entertain"! Perhaps you could suggest that your MIL help in a different way (grocery shop, cook dinner, clean your bathroom), to be helpful, although, forgive me for being blunt, it sounds as if she wants to make herself feel better first & you come in second. By all means, tell your husband that you would rather not have MIL with you during chemo; he needs to back you up on this. 
You have a big enough battle against cancer without also having to battle "helpful" family members also. If MIL gets mad, she'll get over it. Please don't take on her problem & feel any guilt whatsoever...if one of you has to feel upset right now, bettter it be her than you!
As far as the teenager; good luck! I know they can be pretty self-absorbed.If no one else is putting Meloni first right now, then you need to. Please take care of yourself and hang in there! I hope I've not offended you with my bluntness, I tried to be diplomatic, lol!
Ruthie
 
 

Got my CT results - and a high five from my oncologist - yesterday.  There are "no areas of concern" in my first post-chemo CT.  He'll scan me every 3-4 months for the next two years and then a little less frequently after that.  I still have the small issue with my thyroid to deal with but both the ENT and the oncologist said it is highly unlikely that, if it is cancer, that it is metastatic lung cancer.
 
Reading all of the survivor stories on this site have really buoyed my spirits.  Thank you for your kind words and support!

Great news yesterday re: CT scan. Following a scare last month on my routine scan which showed that my lung had collapsed again (which bought me another bronchoscopy & biopsy, which were good), my scan done on Monday revealed absolutely no abnormalities plus my lung is almost entirely re-inflated! Three months of freedom!  Yay!!!

Ruthie. As a newly diagnosed stage 4 just starting the process I find you inspirational. Love your spirit. Praying for you today.
Julie Roe

Great news yesterday re: CT scan. Following a scare last month on my routine scan which showed that my lung had collapsed again (which bought me another bronchoscopy & biopsy, which were good), my scan done on Monday revealed absolutely no abnormalities plus my lung is almost entirely re-inflated! Three months of freedom!  Yay!!!

Hi Lauren,
 
Appreciate your kind words. I will keep checking regularly; I always come away with something positive. I go to the oncologist tomorrow to find out the results of the CT scan I had done on Monday...hopefully my lung is back and no nasty surprises! So far, though, I am grateful that, even when the results haven't always been great, there has always been, so far, a way to treat the complication & get back on track.
 
Again, thanks for the good thoughts...glad  you guys are here!
 
Ruthie

I had an upper left lobe lobectomy followed by 4 rounds of adjuvant chemo in 2007. Been NED since until a march ct showed ground glass opacity in two lobes of right lung. I had just gotten over pneumonia so was hoping it was infection but my gp and surgeon were very concerned. Had a follow up ct and results today said previous opacities were resolved and no metastis seen. Sounds good to me.

Hi Ruthie,
 
Thank you for sharing your story--your post brought a big smile to my face! I'm happy to hear that LCSC has been such a positive part of your life. I am sorry that it has been quite a roller coaster for you, but you seem like an incredibly strong person and role model to your daughter.
 
Stay in touch!
 
Lauren
--
Digital Community Manager
LUNGevity Foundation

Tom, you are a blessing to me. I am a rational, intellectual type and this information is exactly what I needed today. I am waiting for approval on my erlotinib but not standing still. I am using my waiting time to do a bunch of alternative immune-building therapies to hopefully work in conjunction with the erlotinib. I have read Gould but didn't know his story on this; I love it. I have read Gould as an amateur Christian apologist learning the "other" side. God has given much wisdom to many. The thing perhaps that makes me smile is Gould's inability to define that strong willed spirit. As a Christian I am blessed to define it easily as the action of Holy Spirit, God's image or "soul" in me. I took enough statistics classes to know what Gould defined but needed to be reminded; I am blessed to understand the spiritual he cannot define. I will be sharing this video.
Thank you, Tom, for blessing me today. I am asking God's greatest blessings to you this day as you bless all of us.
Julie

Thank you, Tom.  I must tell you that you are somewhat of a celebrity at our house...we have a 34-year-old daughter who, due to a brain injury, functions at about a 6 year old level. She was, understandably terrified by my diagnosis. Since finding this site, I keep telling her about you with close to the same diagnosis still thriving after 12 years. It has really gotten through to her & she asks about your regularly.   This is one of those times that you have a great positive effect in people's lives that you aren't even aware of!
 
I always enjoy reading your posts...keep up the good work! 

Marc
 
SO happy to learn of your good news! Wishing you all the best!
 
Ruthie
 

Marc, I am very excited to hear that you are a fellow ALKie. I have been on Xalkori (crizotinib) now for 15 months. I am stable with no signs of progression. Everyone's body reacts differently, but I can tell you the side effects that I have experienced have been minimal. In the beginning I had some visual disturbances such as flashes of light when going from a darkened room into a lighted room. If I take my medication without eating something first I will get nauseated and vomit. If I eat before taking my med I have no problem. I have had some severe bouts of diarrhea that have resolved with a probiotic. If I did not have to take my pills I seriously would not know that I have cancer. I do all the things I have ever done. I am praying that your results will be as good as mine have. God be with you.

My oncologist just called with lab results.  I tested positive for the ALK mutation.  She was very upbeat and positive about the targeted therapy options.  I am going on Crizotinib immediately. 
 
Anyone else on Crizotinib?  Side effects?  Success to date? 
 
God is good...  Praying this med does the trick!  For a long time
 
Marc

I haven't posted a lot (just in the Introduce Yourself section) but I wanted to share this in case it gives hope to someone just diagnosed or going through treatments. I was diagnosed with Stage IIIb SCC, with a very large mass (5x6cm) in my right lung and affected lymph nodes all the way up to my collarbone. I had 7 weeks of chemo-radiation (IMRT, carbo+taxol), and I just got the results of the first PET scan (3 months post-treatment).
 
There were a few spots to watch--some lit areas on the PET and ground glass opacity sections on the CT--but both the radiologist and my radiation oncologist believe those are inflammation from the radiation. The official results at this point are that there's no longer any sign of active cancer anywhere in my body.
 
I strongly suspect the fact that the cancer was HPV+ played a role in its response--my previous tonsil cancer was also HPV+ and it also responded very well to chemo-radiation. If you have a previous history of HPV+ cancer, I highly recommend you ask for them to test any later cancers for HPV.
 
I'm still processing the results because while I was optimistic, I wasn't THAT optimistic. It's a good example of why the median isn't the message. Here's hoping my CT scan in 3 months has similar results!

Thank you Ruthie.  I appreciate you response.
 
God is doing something massive in my life.  I can't explain the peace I feel or the fight and determination I have in my heart.
 
I was at my oncologist today and I just wanted to hug each and everyone of the people there and pray with this.  I don't know if that is normal for a 38 year old man to feel that way.  Probably not...
 
I can't wait to see what God has around the next corner.  My story isn't over, just waiting for the next chapter to be written.
 
Marc

Marc;
 
So sorry to read of your recent diagnosis, you & your family will be in my prayers. I just wanted to tell you how inspired I was by your attitude & determination...those attributes will serve you well along the journey ahead. I was diagnosed in August 2015 w/inoperable stage IIIb adenocarcinoma, have had chemo, radiation, surgery (lymph node involvement) & more radiation, but am still in the fight.
 
I am new to this site myself, but have found much good information as well as inspiration already, but was moved to tears reading your post. Love your attitude and the fact that, in the midst of your own crisis, you are already reaching out to help others. I am looking forward to reading of your progress & ultimate triumph! Thanks for the boost.
 
Ruthie