Mally

Thanks, Tom.  My rash is not nearly as bad as you describe.  It looks like acne and itches and burns but seems to be letting up a bit after about 3 weeks of Gilotrif.  With a little of my wife's makeup  I even made an appearance New Years Eve.
I was prescribed Doxycycline "for the rash" and didn't quite see the connection.  I can understand if the purpose is to head off infection but when asked, my oncologist said that the Doxycycline appears to have a beneficial effect on the rash that goes beyond the antibiotic itself and that they don't really understand why.  I love a mystery...
Gage
 

Hello Robin and welcome here!
I truly hope the scan results show a vast improvement.  I know what Scanziety is all about.  In fact, despite being a long time survivor, I still see my oncologist 2 times per year and endure the very same post-scan uncertainty anxiety you do.
Stay the course.
Tom

It sounds like we should rename this conversation Giloftrif!! [emoji5]

I am so glad it sounds like this medicine is THE thing y'all needed!! Good luck & God bless!!

Take care,
Mary

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The photo was easy to change!

Sorry it's so crumby. My pal took it with her phone in 2011, before camera phones were as good as real cameras!! LOL

Its dated 6/4 so I got mad at clumps falling out at around the 4-6 week mark. It was falling out before then, but got bad then.
?

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I hope i get to have 3 weeks between doses of chemo and did your hair all fall out with your treatment? Ive heard that not everyone loses their hair does that sound right ?

My sarcoma will be followed for 10 yrs they told me but my lung cancer is a primary so its not related to the sarcoma which strange as it sounds i grateful because sarcoma is harder to treat. How long before my hair will fall out do you think ? Im going to get a wig early on lol

Mally,
Seeing you are getting some wonderful feedback from Susan and Mary.  This might help you prepare for chemotherapy.
Keep those questions coming!
Stay the course.
Tom

& the treatment had a "complete pathologic response " meaning it killed all of the tumor!

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My lobectomy was done after the treatment. Sorry, I thought I was babbling, so I left off some of the non chemo stuff.

My tumor was called an apical one, also known as a Pancoast tumor. It is called that because it occurs in the apex - upper tip - of the lung. Mine was in the right lung. I'm right handed... or was. I still am for writing, and often times I reach to do something with right you just to find it can't manage to do what I wanted. Most times its a door knob. Grabbing PLUS turning are too much. I have nerve damage due to the tumor sitting on nerves, or pushing bones onto them. All I know is my three outer fingers are nearly useless and nearly numb, increasing in trouble as they grow shorter.
The surgery actually took 2 different surgeons, a neuro ortho surgeon started by getting parts of three vertebrae out of the way for the the tumor to be free up there. He then used a small rod to keep the remaining bones in place.
The thoracic oncologist then took the lobe, tumor, and ribs. It's late and I am forgetting. 2.5 or 3.5 ribs...
A vertebrae below the rod started to crumble but no matter how much I complained the neuro surgeon said I was fine & the pain docs checked with my hubby to be sure I was taking my pain meds... then upping the strengths.
A year and a day later Mr neuro ortho surgeon went back in. He took out the tiny rod on the right side & replaced it with bilateral (both /two sides) rods going 2 discs above & 2 or 3 below where the 1st 1 was.
As I awoke from that surgery I was in so much pain I couldn't breathe, think, move!! I literally begged them to kill me even though I could see my husband and the fear in his eyes. They gave me some meds until they could get a scan, then they put me out. I don't know with what or any of that. I barely remember being told I needed a new surgery in the morning & I would feel 1000% better in the morning. I guess I signed something or maybe hubs did.

The Dr had bent the rod to match my now very crooked spine... at the end of it, the rod actually straightened itself enough to pull the screw right out of my vertebrae!!

I really hope the cancer never comes back since I'm pretty sure that the threat of another surgery would send me right up a wall! A discussion about maybe inserting a pain pump had me crying hysterically as much as I think I'd do most anything to get out of the never ending pain.

Ugh. See? That's what happens when I start babbling.

I hope for your sake you stopped reading a few dozen lines ago!! Hehehe

Take care & sorry for the extra long answer.
Mary

PS, this was all back in 2011 & 2012.

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PS. I had a small melanoma removed from my left thigh just over 7 years before the lung cancer was found. They told me if I made it 7 years without a recurrence, I could consider myself cured... yeah. Thanks for THAT! Grrrrrrr
I think, given the choice, I would have preferred the melanoma. Based on my first one being so small, easy to find & easy to remove anyway.

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I am SO very happy for you skmcornett that it has gone so well & that this has lifted your spirits Mally!!

My chemo was different. A round was 6 (week day) days. It was also 2 kinds of infusion via iv. Monday & Friday were both chemos, the rest were just 1. I only had to see the Drs once a week. I was doing radiation at the same time. Radiation was every weekday for 28 days. Mondays and Fridays were soooo long because that 2nd chemo took about 6 hours to drip vs the 2.5 of the first bag. The chemo "had" to be done first, so the poor rad team got lots of overtime on my behalf.

No one could believe it, but my only side effects of note were exhaustion, loosing 80+% of my hair and nausea if I could smell gasoline. So I stayed away from gas stations! My hubs filled my tank every other day for me. Yeah, I drove from the NJ Shore to Philly for treatment... 90 miles? Yeah. I was still glad it was outpatient! The docs kept asking if I was sure I felt ok because it was "some pretty strong chemo" I was on. Cisplatin & etopiside.

You just can NEVER tell how anyone will react to any treatment. Most of the people I have spoken to tell of experiences more like what you read above. I always pray that anyone I know of can react more like me. I will do the same for you. Promise!

Keep your spirits up! I swear it's what helped me!

Take care,
Mary

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Mally,
For me, one round = 1 day of treatment, and all of my chemo was outpatient.  Chemo days were long, though.  I started with lab work then to the infusion room so that the nurses could start IV fluids.  Once the oncologist saw me and reviewed the lab work, he'd sign off on chemo and they would start the chemo drugs.  Because I had fluids, two different drugs, steroids, and fluids each time, I was usually at the clinic for 7-8 hours.  I had three weeks between each treatment.
For better or worse, I could predict when the side effects would kick in.  I had chemo on Fridays and felt pretty good until Sunday, when the steroids wore off.  Fatigue and nausea kicked in on Sunday and were the worst on Tuesday.  By Wednesday, I started feeling good again.  The worst one for me was the last chemo - it took a few extra days to feel normal again. 
I hope this helps.

You have lifted my spirits dramatically with your story and can i ask you how long is a round of chemo and is it on an inpatient or outpatient basis ? 

Mally,
As I mentioned in my other post, I had lymph node involvement.  Seven of 10 had cancer, but they were able to get clear margins.  I followed with chemo and I've had three clear scans since then.  Don't give up!  You can beat this monster.

My nodes were all clear, so I have no experience. What did they say about how & when they will decide what to recommend to you? Was it a lobe or wedge that they took & if lobe, which one? How long ago? When is your next appointment? No matter what, you need to be part of the care decision. Make sure you are clear on what they are recommending & why.

Good luck & keep in touch!

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Mally,
Seven nodes with metastatic lung cancer?  In my experience, wait and watch is not a treatment plan for cancer discovered by pathology examination.
Have you consulted with a medical oncologist or has your case been handled by only a surgeon?  Post surgical chemotherapy is normally a standard of care after most if not all surgical resections.  If you have a medical oncologist, I'd nudge him or her into formulating a treatment plan pronto.  If the nudge doesn't have the desired effect, I'd find another post haste.
Even one cancer cell in one node can be a vast problem.  Keep us informed and welcome here.
Stay the course.
Tom

Mally,
I had a lobectomy of my upper left lung in February 2016 for a mass that was diagnosed as adenocarcinoma (no mutations).  Surgeons removed 10 lymph nodes and 7 had cancer cells.  I went through four rounds of chemo (cisplatin/alimta).  If you don't want to wait, or you don't like the treatment options provided by your team, get a second opinion.  
Hope this helps.