Julie in SoCal

Tampa called , been moved to Bay Pines in St Pete. Seems that is where the Dr is they want me to see because this kind of cancer also goes for the brain (still have headaches)   Small Cell Extensive Stage
Just gets better every day. Still on for PET scan Monday but added back a biopsy to check to see if it is the type of cancer he thinks it is. ? Surgery is still a go for next week.
does that make sense ?

JUdy, So Sorry to hear about the "upgrade".  This is not what I think of when I think of upgrade... I think of looking down on my boarding pass and seeing a 1 digit seat number... but, I digress.
I was on Keytruda for melanoma.  I had an infusion every three weeks for almost 2 years.  It was easy, for the most part.  Afterwards I was tired and feeling "flu-like" for a few days, but after that I felt fine. The wash, rinse, repeat cycle of Keytruda got a bit monotonous, but I was able to schedule it to fit my schedule. Also comparatively in the world of cancer treatments, I found it pretty easy.  And best yet, it worked. I could feel my melanoma tumors shrink and I am now no evidence of recurrent disease (NERD) for melanoma.  This is awesome!
Wishing you all the best!
Shalom,
Julie
 

JUdy, So Sorry to hear about the "upgrade".  This is not what I think of when I think of upgrade... I think of looking down on my boarding pass and seeing a 1 digit seat number... but, I digress.
I was on Keytruda for melanoma.  I had an infusion every three weeks for almost 2 years.  It was easy, for the most part.  Afterwards I was tired and feeling "flu-like" for a few days, but after that I felt fine. The wash, rinse, repeat cycle of Keytruda got a bit monotonous, but I was able to schedule it to fit my schedule. Also comparatively in the world of cancer treatments, I found it pretty easy.  And best yet, it worked. I could feel my melanoma tumors shrink and I am now no evidence of recurrent disease (NERD) for melanoma.  This is awesome!
Wishing you all the best!
Shalom,
Julie
 

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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Denise,
I was wondering how your treatment was proceeding.  Glad it is finished and sorry you need to endure the 2 months of CT scanziety!
Thank you for complementing me on my book but in truth, my wife is one strong, determined person.  I can't imagine anyone going through this nightmare alone and hope you have someone close who can accompany you to consultations and listen to your concerns, and motivate!
I guess we will know the success of your first line treatment by the 3rd week of June.  Stay connected in the intervening period but don't forget the purpose of lung cancer treatment -- to extend life.  So enjoy these two months and celebrate life.
Stay the course.
Tom

Hi Julie in SoCal,
I had an open lobectomy last May, and I think there are some similarities in recovery. 
Spirometer - they will likely give you one prior to surgery. Practice with it before surgery, and IMPORTANTLY, use it regularly post-surgery. 
Walking - your doctor will probably want you to take some slow walks around the hospital once you're out of ICU (ICU is standard after surgery). Do it. Use a walker or wheelchair for support and be kind to yourself. You will fell breathless for awhile until your lungs adjust. Once you get out of hospital, continue with slow walks, but don't go so far out at first that you can't make it back home (my family requested I walk in the backyard unless I had an escort for a few months).
Sleeping and coughing can be tough for awhile. I used pillows to support various parts of my body until I found the sweet spot. I also used a small square pillow that my mother-in-law made me, which I held under my right arm and against my upper right thoracic region for support. Bracing with it while coughing helped control the pain, and using it as support helped whiled I walked distances. 
There are other things, but I'm sure many here have lovely tips! 
 
Mel

I had a VATS lobectomy in November. I wedge pillow was really helpful for my breathing and comfort during my recovery. A 12 inch foam wedge will give you about 45degrees elevation. I recommend it!

My words of wisdom are be patient with your recovery.  Whether its VATS or traditional lobectomy, take your time and listen to your body.  Definitely make friends with that danged spirometer.  
I'm cracking up that you named your tumor "Larry".  I named mine "Norman" and now that I have a recurrence in my lymph node, we've named it "Larry".  If we don't laugh, we'll cry!
Please keep us posted on your progress and ask if you can think of any more questions. 

Because I had the traditional lobectomy, I think my recovery was a little slower.  I was walking in the hospital the day after surgery.  On my first day home, Mom and I walked to the mailbox and over the next week I progressed to walking to the end of the block and back.  It was a struggle, though.  You might want to consider making arrangements to sleep downstairs for at least a few days until you start to really bounce back.  

Julie,
And Susan: you ladies are marvelous.  I named mine "pain in the butt"!
I was not discharged from the hospital until the physical therapist watched me negotiate a flight of stairs -- in the hospital.  I agree with Bridget and Susan's suggestions and reinforce Bridget's by suggesting you go to a mattress store to audition a wide variety of pillows including the "wedge" incline pillow.  You may even find you need two to get the right angle of elevation.  You will not enjoy sleeping on a flat bed for some time.  (I'd audition the pillows at a mattress shop but buy on-line for better pricing).  (I'd even recommend you get 2 15" wedge pillows because you'll need 1 as a minimum but may find more comfort with two). 
The spirometer workout pre-surgery has an interesting psychological prospective.  Note where you are able to keep the ball before surgery and your goal is to achieve the same elevation after.  When you do, you'll be ready to be discharged.
Expect a day or two of pain but also expect the hospital will administer medications to counter the effects of Larry's resection.  Don't be a hero and refuse the medication.  The pain will diminish every day.  After hospital discharge, bending over will be a challenge as will lifting anything heavy with your left arm.  So be prepared to modify your activities.
Stay the course.
Tom

I was walking around the hospital unit the day of my VATs lobectomy and released the following day with a portable chest drain. The day after that I was walking around the neighborhood wearing an oversized raincoat to cover the drain tube and bag. I probably could have made it upstairs as soon as I was home, but didn't have to, as my bedroom is on the main floor. The more you move around, the easier your recovery will be. I did sleep and hang out on the couch (futon-type) in the living room- with my wedge pillow -for over a week, because it was less boring there- more natural light and I could see what was going on outdoors. 

As I stated in my introduction I was diagnosed with Stage 1A Squamous NSCLC and have just finished 10 intensive radiation sessions spread over a three week period. So far very few side effects: less energy and slightly sore rib cage. No skin problems but I've been faithfully using Miadern lotion every day. My doctors tell me no chemo is necessary. So I now settle in to play a waiting game for my 2 month CT scan.  I check this forum almost daily to see what's been going on!
Tom, I read your book and cannot imagine everything you have gone through. You are one strong, determined person. I admire your courage.
My best to everyone 
Denise G.

HI all!
Yesterday I had a needle biopsy of the hypermetabolic critter that is in my left lung.  I will admit, I was a bit scared and worried.  The thought of someone (even a really highly trained someone) sticking a really long needle into my lung gave me the willies.  But it wasn't bad.  Being on my stomach on the CT and having to raise my left arm above my head wasn't comfortable, but that was about it.  Oh yea, there was one time (when the dr entered my lung?) that hurt, but that didn't last very long. Not bad at all.
Now I'm just waiting for the results.  UGH!  Should know something early next week.  Will let you know.
Shalom!
Julie

Hi All,
Thanks for the welcome. 
I saw the lung surgeon on Monday and he would like a biopsy.  Seems the operations are different if the my mystery lung critter is melanoma or lung cancer.  If it's melanoma, then I'll have a wedge resection, but if it's primary lung cancer, then I'll have the lobe and lymph nodes removed.  It makes sense to know we're doing before we go in and operate, but I'm not looking forward to the needle biopsy tomorrow morning.  And then of course there's the waiting.  Anyone know how long it normally takes to get biopsy results?
I know I'm just whining, but I just want to be done with treatment.  I've been fighting melanoma since 2008, and the thought of opening another front in this cancer war just makes me tired. 
Thanks for being here,
Julie
 

Hi Julie,
I'm not a newcomer to cancer either. I was diagnosed with a rare and aggressive cervical cancer in 2011. My routing surveillance CTs turned up  a slow-growing thing in my lung that didn't look like a met, but they couldn't tell for sure without a biopsy. Due to its location, they had to take out my lower right lobe, which was done last November. Sure enough, it was an adenocarinoma.  I recovered pretty fast from surgery (VATS- laparoscopic, which is much easier than open surgery.) I also had breast  cancer in 2008.  So I've ben around the cancer block a few times.As I've said on this site before, I think cancers should be one to a customer- or better yet, NONE!
You're right that there's a lot to learn about lung cancer. I've found this site to be a good source of information and support. Hang in there!
Bridget

Hi, Julie,
Welcome to LCSC. Please keep us posted! I hope you get some answers from your appointment today.
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation

Julie,
Welcome here. 
Given your description of apparent progression you've found the right place. 
This will be an abbreviated response because I'm thumbing it on my phone. Can't seem to make my thumbs hit letters!
I'm sure you now realize there are vast differences to treatment approaches between melanoma and lung cancer. At Lungevity.org, we have a section called Lung Cancer 101 in case you haven't found it. 
I hope your time on the typing and staging trail is brief. 
Stay the course. 
Tom

Greetings New Friends,
I'm so glad to have found this board.  I'm a Melanoma survivor and am have found these forums indispensable for both support and understanding this crazy, weird cancer world.  THANKS!!!!
My story: I have Stage 4 Melanoma, and a year ago in the course of routine melanoma scans and whatnots, we discovered two lung nodules.  At first, we, (myself and my Rock Star oncology team) decided to watch them and see what they would do.  They were small (6mm), very slow growing and possibly harmless. Also we figured that they were probably melanoma mets, if they were mets, the mel treatment I was on should deal with them.  Mel treatment did nothing for them and in the course of a year, one of them doubled in size (to a 15mm x17mm a spiculated mass) and lit up a PET scan (SUV 7.5).  I also now have "ground glass opacity" around the lit up nodule.  This got our attention. My Rock Star Doc team thinks this lung cancer, not melanoma.  So tomorrow I will be talking with a thoracic surgeon about removing my mystery lung critter. 
This is not my first rodeo with cancer, but there's a lot to learn about LC.  All wisdom and sage advice welcomed!
Thanks friends,
Shalom,
Julie