[Have to let go]

Pegi,

I'm so sorry that you and your husband are dealing with this.  I pray that he gets more good days and that you two can enjoy your time together.

[1 year post diagnosis]

Good morning, Faye.  There is an unfortunate and undeserved stigma around lung cancer.   When I tell people that I have it,  9 times out of 10 the response is "did you smoke". It shouldn't matter.  I usually take that opportunity to educate them by telling them that it only takes lungs to get lung cancer. 

[taxatere]

Hi, Sally. It's quite understandable to be scared when starting a treatment.  We don't know how our bodies will react, what side effects we'll endure. Hopefully some of our members who have had taxotere can jump in on this topic. We're here for you.

[New Here]

Wheezer,

I'm only 18 months into this journey but I don't think the "what ifs" ever go away.  I'm on the 90 day scan routine so I'm good for about 75 or 80 days then the "what ifs" hit me.  I had a recurrence earlier this year and am on the scanning end of that episode.  I hope your scans continue to be good news.

[NSCLC - New lymph node following treatment]

Hi, Larry. I'm also stage IV NSCLC. I was diagnosed during surgery as IIIa but a subsequent scan found a metastatic tumor on my thyroid. When my doctor changed my staging, I lost it. Cried for days and considered giving up. But, like others here, I sought treatment for depression. It was the best decision for me.  

I found many here who have walked the same path, or worse, and are now long term survivors. They give me hope. I've said we're all members of a club that no one wants to join, but this group has been so wonderful. 

We're here for you.

 

[Clean Scan]

I am so excited and happy for you!!! NED!!

[New to this, waiting on diagnosis]

I know this is a scary time; waiting on results is so nerve-wracking.  Did you doctor give you an idea of when he/she would call? There's no harm in calling his/her office to see if the results are available now.  Please let us know how it goes.  

[Introductions: Road to Know-Where]

Hi, Ray. It's all overwhelming right now; all of us understand it. But I think you'll find hope I the fact we have so many long term survivors here. We've seen so many advances in treatment the last few years and that gives me hope.

Keep us posted on your progress. We've walked the same path and are here for you.

[UPDATE 3 MONTHS LATER]

Thanks for sharing the update.  I also had the traditional surgery for an upper left lobectomy.  You are the first person I've heard refer to those pains as zingers; I likened them to a deep spasm.  That said, I had the worst ones at three months out from surgery and then they just faded away.  Please keep us posted on your appointment and we'll hope for a great report then.

[Introduce myself]

Good morning, Mary Lou.  We're glad that you found us.  This site is an excellent resource for patients, caregivers, and family and friends.  Can we point you in any direction?

You might check out this link to help you get started: 

 

 

[Allyn Drew]

3 hours ago, FightingMay2014 said:

Congratulations Susan! How in the world did you do it? You are truly an amazing inspiration.....I'm trying to help my mom fight it however possible. She is stage 4 too and I out her story up on introductions.

You will find many long term (10+ year) survivors here; I'm in awe of them. They have shared so much information, wisdom, and inspiration. They keep me moving forward, and I hope they can help you and your mom.

[Joining as an advocate for my mother who has stage 4 non-small cell lung cancer since May 2014]

Bless you.  Sounds like your mom has had a tough time, but she is fortunate to have you as an advocate.  I hope her providers can give you some answers.

[So much so fast...]

Isn't the shirt great?  Got lots of smiles from my fellow baldies at the oncology center.

[Take that, stupid lymph node!]

I made it 9 months after my treatment before a recurrence was found earlier this year.  I had one misbehaving lymph node near my aortic arch so it couldn't be surgically removed.  Between March 21st and July 14th, I had a biopsy, 30 rounds of radiation, 8 rounds of chemo, and lost all of my hair.  But, it was worth it because I received my CT results today and I'm NED!!  I'll have a PET scan in about 8 weeks just to ease Super Doc's mind and, if all clear, I'll resume my 90 day scan cycle.  

As always, I'm eternally grateful for the friends and resources available on this site.  

 

[So much so fast...]

Hi, Sherry.  It's hard not to get overwhelmed by all of the new information, appointments, treatments, etc.  For me, it was a total lack of control of my schedule and my life that drove me crazy.  But it sounds like you have a great support system and that really helps.  I shaved my head a few weeks back and had a couple of guy friends shave theirs in solidarity.  I went to my oncology appointment today wearing a t-shirt that says "My oncologist does my hair."

Keep us posted on your progress.  We're here for you.

[Allyn Drew]

Hi, Allyn.  I am a stage IV survivor for almost 18 months; just finished beating a recurrence.  We understand how you and your wife feel right now.  Everything about this stinks, but this forum has a wealth of information and long-term survivors.  How can we help you? We're here for both of you.   

[New here]

Welcome.  I hope that you'll find information and hope in this forum.  It has been a life saver for me.  There are many wonderful people on this site who have walked a mile in your shoes.  Let us know how we can help you.  

[New to this]

Just checking in on you to see how your PET scan went this week.  

[Introducing myself]

Hi, ViviAnn.  We're practically neighbors - I live in NRH.  I didn't have any same-day or immediate side effects due to the steroids provided pre-treatment and the days after.  But I found after my first full dose of taxol that my side effects kicked in as soon as the steroids were out of my system.  As for hair loss, I didn't lose it last year but have lost it this year.  It started slowly with my 6 "light" doses of taxol, but within 14 days of my first full dose, my hair was falling out in huge clumps.  I gave in and shaved it.  

The docs can give us their best estimate on side effects but we all tolerate the treatments differently.  I have a friend who took cisplatin and it caused him to lose his hair, but when I took it, it didn't affect my hair at all.

Hope your husband feels better soon. 

[Chemo question]

Judy,

Sorry I missed your post.  I had four rounds of cisplatin/alimta last year and had some side effects but did not have edema.  But...I just finished 8 rounds of taxol/carboplatin and I have watched my weight tick up and my body swell like crazy.  The oncology nurse told me that between the steroids used during and after treatment, and the side effects of the treatment, it was not unusual to see weight gain and swelling.  My oncologist doesn't even bat an eye at my weight.  I'm almost 3 weeks out from my last chemo but had steroids much longer than expected so I'm hopeful that my swelling will diminish and I can see the scale start going the other direction.  

[Surgery 3/27/17 for stage IIb nsclc]

Good morning, Karen.  I'm sorry you've had such a tough time.  I was diagnosed with stage IV early last year and just finished a round of chemo for a recurrence.  The side effects have been brutal.  They were bad enough to help me see why people opt out of treatment.  But there is light at the end of the chemo tunnel and it is that we're all living longer with this diagnosis hanging over our heads.  We're also seeing new treatment options for lung cancer which is what allows us to keep going.  My hope is that I can continue to treat this as a chronic illness with the occasional flare-up.

Please don't lose hope.  We understand where you are and we're here for you.

[New to this]

Hi, Sandra.  We will cross our fingers for a good outcome. The waiting is the crummiest part. Congrats on being an 11 year breast cancer survivor!

[Taxol - ugh!]

I do believe that Taxol was formulated by the devil's pharmacist!  I had six "light" rounds of Taxol and Carboplatin during radiation in April and May, and I've had two additional full-strength doses of chemo since mid-June.  I'm not giving up, but after these last two rounds of chemo, I certainly understand why people suspend or quit treatment.  

Super Doc warned me that it would be bad, but he said it wouldn't be as bad as last year's cisplatin/alimta combo.   I love Super Doc but he lies!  Taxol brought some of the usual side effects (fatigue, neuropathy, tinnitus) but it also brought total hair loss, insomnia, GI issues, steroid bloat, weight gain (!!) and a couple of others.  It has just about wiped me out mentally and physically, and that's tough for me to admit.  I know that there are others who have fared so much worse and I try to always keep that in mind.  That said, I'm finished with chemo and will scan again in a couple of weeks.  Ready for another reprieve from treatment and resuming life 90 days at a time between scans.

 

[Rash with Carbo + Pem]

Julie,

Don't know if you know about chemocare.com but it's hosted by the Cleveland Clinic.  I've found it to be very useful.  Here's a link to their page on rashes: http://www.chemocare.com/chemotherapy/side-effects/skin-reactions.aspx

Glad that the onc RN says not to worry.  I'm currently dealing with a rash on my scalp following chemo and a shaved head.  What a mess....

[Introduction and no news yet]

Hi, Sherry.  Sorry for the circumstances that brought you but glad you found us.  Most of us are diagnosed with lung cancer at its later stages; symptoms mimic other conditions (i.e., asthma, pulled muscles) and we just don't have good proactive screening.  That said, it sounds like your team has a plan to get started with a bronchoscopy and biopsy to confirm that's what it is.  I had a mass in my upper left lung that was biopsied through a bronchoscopy but results came back negative.  I'm still not sure how that happened.  But....it's been 17 months since my stage IV diagnosis and I'm going strong.  You will find so many long term survivors on this forum.  We all understand the concerns, fear, angst, and everything that goes with it.  As  you move through this process, please keep us updated and let us know how we can help you navigate.