Judy M.

Hi Everyone,
Finished with S.B.R.T. to the 3 tumors. Received50Gy/5 Fractions with treatments being every 323rd or 4th day. Don't know why the 2 or 3 says between except that Radiology Oncologist says it was to give my normal tissues time to heal. And I'd had standard radiation less than a Year ago. Perhaps that made a difference. At the conclusion 1 tumor was disintegrating and they thought the other 2 had shrunk, but hard to tell because of scar tissue. So we wait and see. The B.E.D. for the radiation was 1000. Hoping Tom knows what that means as far as standard S.B.R.T. goes. Chemo has been changed from Cisplatin/Taxol to Cisplatin/Alinta. Tom, you were right. They are treating this as though I've had surgery on the 3 tumors. Medical Oncologist said as much. The reason he gave for the switch in chemo is interesting. He said 5 years ago they weren't very sophisticated and gave the same chemo for every type of lung cancer. But now they have the chemo more fine tuned. Cisplatin is still given but they've learned that Alinta doesn't work well for squamous cell, but works very well for Adenocarcinoma. Will have 2 treatments 3 weeks apart, then scan. If all looks good that's it. If not 2 more rounds of chemo. Good news is I won't lose my hair with the Alinta. Both Radiology Oncologist and Medical Oncologist think I have a good chance with this treatment and the day things have gone so far. Just updating since my treatment continues to be rather unique and I have no idea how do start a blog.
Judy M

Tom,
Just had 2nd SBRT treatment. My physicist says he'll be present for all of my treatments, and he's very happy to answer questions so I ask away. As far as SBRT exciting the tumor he says no, it won't. The reason being because the fractionations are so high. Pretty much the little devils just don't stand a chance. But he said, on the other hand, if I was having standard radiation it would be bad if I missed a treatment because the tumor knows it's being threatened and will quickly develop radiation resistance. I also now know that Gy stands for a gray and is sort of like a degree on a thermometer except it's a particle of ionized radiation. And, like you, he calls that energy. I'm receiving 10 Gy from 5 separate angles on each tumor for each treatment for a total of 50 Gy to each tumor for each treatment. Being you, you probably already knew most of this. But you're so good to answer all our questions that I wanted to pass on what I could. Thomas, my physicist, is great to talk to if you have anything else you want me to run by him
Judy M

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Thanks for the good thoughts Mally. And for telling me about hearing the edema in lower body as a side effect. First I've heard about that. I'll do some research. 
Judy M. 

Said a prayer for you. Praying for peace and good scans. 
Judy M. 

Said a prayer for you. Praying for peace and good scans. 
Judy M. 

Hello Kenny.  Welcome to our support group.  I am a Pancoast Tumor survivor !   Dr. Pancoast who years ago set up the treatment for a tumor in the apex of the lung did a great job.
( The tumor was named after him because he set up the treatment for this lung cancer.)   I also had chemo and radiation before surgery and more chemo after surgery.
  I was diagnosed in December 1997 !   I'll be celebrating 21 years of survival in December.   
I had pain down my arm  and my chest wall and found out at the doctors it was due to the tumor pressing on nerves and my chest wall.  After surgery the pain was different for it was due  ribs being broken and muscles stretched to get at the tumor..  It lasted for a while . 
All of the treatment was really worth it for I am still alive !  Please keep us posted on how you are doing.  
Donna G

Thanks everyone for answering some of my questions. I looks like I'll really not know a lot more till I know exactly what drugs they plan on using & how my body reacts to them. One thing I am learning is about a "round",  I thought each round was a treatment; now I understanding each round has multiple treatments. I've also learned to tell them I want a port; I have terrible veins. My nervousness about the upcoming chemo has not abated, but knowing I've got support from you all who've been there before me is a huge help. I meet with the surgeon tomorrow to make sure my most recent infection is cleared up & surgery is 9/14.
Shelby

Well, I think we've about exhausted my ability to make guesses.  I'm not a medical professional, just a person who's learned a bit about lung cancer in the 15 months since my diagnosis.  I think there's reason to be hopeful, based on what the doctors have said.  The one thing to be aware of, though, is that further testing can change the outlook--sometimes for the better and sometimes for the worse.  The thing to keep in mind is that only a few years ago there was very little that could be done for lung cancer.  Today there are treatments that were unimaginable a short time ago.  So there's definitely hope.  What I've found most helpful, personally, is to keep sort of a flexible mindset--I've been very, very lucky, myself, so far.  Yet I know that this is a persistent and tricky disease and my good luck could change in the future.  If that happens down the line, though, there may be even better treatments available.  New discoveries are happening all the time.
I hope you get some more definite (good) news soon.  

I did a wait & watch for 17 years on some small ones similar to yours; they called them granulomas, thought to be scaring from histoplasmosis. I had a CT done every year. Sometime there was a little growth, usually they stayed the same. They had considered a needle biopsy a couple of times but never did one die to the small size, minimal growth & closeness to my heart. Along with this I had a severe chronic cough, bad enough to crack ribs a few times. I was eventually put on gabapentin & it was beneficial in helping calm it. The CT I had this year showed the largest nodule tripled in size. It now was a much bigger concern. I had a biopsy that confirmed adinocarcinoma; followed by a PET, broncospy & a medianoscopy. It appears to all be contained in the left lower lobe. I'm having VATS surgery this morning for a lobectomy at Hershey Penn State Mecical/Cancer Center. I will then have  follow up chemo to make sure no more cells are lurking behind. They've not staged mine yet, waiting till it's out & have the full pathology repory.
Best wishes to you all, I'll be updating my experience and results on my surgery page afterwards when I know more.

Asked today if I am still receiving SBRT on my hip and knee or if I'd been changed to another type because of the pain limiting the time I could lay still on the table. I know a standard radiation treatment doesn't take as long as an SBRT treatment. Glad to learn I'm still receiving my originally planned SBRT. My sweet radiation techs have just gotten a lot faster and worked as quickly as they could. I was among the first if not the first SBRT patient they had. They've become much faster since then. They said they first worked to become very accurate because it's important in SBRT. Then they worked to become faster. As I've said before, radiation techs rock, and I'm a big fan of SBRT. 
Judy M. 

Cancer is a drag.
But if we changed the first letter to a D.
we could all be a dancer and could have a ball.
Bob

Yes, you are Tom. And how thankful we all are for that. ☺So, Lungevity Forum has just destroyed another statistic. 
Judy M. 

Asked today if I am still receiving SBRT on my hip and knee or if I'd been changed to another type because of the pain limiting the time I could lay still on the table. I know a standard radiation treatment doesn't take as long as an SBRT treatment. Glad to learn I'm still receiving my originally planned SBRT. My sweet radiation techs have just gotten a lot faster and worked as quickly as they could. I was among the first if not the first SBRT patient they had. They've become much faster since then. They said they first worked to become very accurate because it's important in SBRT. Then they worked to become faster. As I've said before, radiation techs rock, and I'm a big fan of SBRT. 
Judy M. 

Steff
Thanks for the encouragement regarding the pleural effusion and hospice. I needed that after today. And I was also keeping in mind that Tom said somewhere he'd once only been given 6 months to live. The battle is certainly rough right now, but I'm not giving up. I believe the Lord will come for me when it's His time. Until then it's up to me to trust Him, keep praying, and keep choosing to live every day with thanks and joy. You guys are such an inspiration and help in doing that. 
Judy M. 

Yes, you are Tom. And how thankful we all are for that. ☺So, Lungevity Forum has just destroyed another statistic. 
Judy M. 

My lobectomy surgery is tomorrow, Friday 9/14. It seemed like forever getting here & now it's here already. I'm first in the morning, need to be there @ 5:30 & surgery time is 7:30. Surgeon is planning on VATs with about a 25% - 30% chance of needing to go open. I've had so many surgical procedures in the past, I'm okay with everything for now. House is mostly cleaned, meals planned, I bought a wedge for sleeping in bed & bag is packed. Any other words of wisdom you all have?
Ps: I found an awesome shirt to wear tomorrow!

Yes, you are Tom. And how thankful we all are for that. ☺So, Lungevity Forum has just destroyed another statistic. 
Judy M. 

Judy,
I've had a couple of plural effusions and was even on oxygen for a period.  I'm still here.
Stay the course.
Tom

I have NSCLC adenocarcinoma with matastases, I was diagnosed in Jan. 2017.  In September 2017 I had cataract surgery on my right eye and in November on my left eye.  All went well.  I did not have the same chemo as your mother.  I was also 68 at the time.  I would suggest that your mother has time ahead for dealing with cataract.  I think that I wanted the cataract surgery as I felt I had some control in that decision.  I also did not want to go back onto a long waiting list.  I definitely discussed cancer treatment with opthamologist and cataract surgery with onco.  I wish you and your mother all the best.

Steff
Thanks for the encouragement regarding the pleural effusion and hospice. I needed that after today. And I was also keeping in mind that Tom said somewhere he'd once only been given 6 months to live. The battle is certainly rough right now, but I'm not giving up. I believe the Lord will come for me when it's His time. Until then it's up to me to trust Him, keep praying, and keep choosing to live every day with thanks and joy. You guys are such an inspiration and help in doing that. 
Judy M. 

Steff
Thanks for the encouragement regarding the pleural effusion and hospice. I needed that after today. And I was also keeping in mind that Tom said somewhere he'd once only been given 6 months to live. The battle is certainly rough right now, but I'm not giving up. I believe the Lord will come for me when it's His time. Until then it's up to me to trust Him, keep praying, and keep choosing to live every day with thanks and joy. You guys are such an inspiration and help in doing that. 
Judy M. 

Thanks everyone. Now it makes a little more sense to me. Since I'd seen her last I've had a pleural effusion of my left lung where a quart of fluid was drained. Even though the effusion showed no cancer cells and has not returned I did read that someone who has a pleural effusion generally has 6 months or less to live. And also since I last saw her I've been put on full time oxygen. This is, according to my Pulmonologist, the result of a COPD flare up. This is the second time this has happened in recent months. The previous brain scan I had showed sinusitis. Sinusitis resulted in COPD flare up which resulted in oxygen use. Sinusitis getting cleared up and a course of steroids enabled me to get off the oxygen. Latest CT showed no mets, but again the sinusitis. Pulmonologist has given me  Antibiotic and steroids, but obviously from the CT the sinusitis is still there. Plus, my temp was just slightly high today and white blood cells were high. Plan to see my PCP. She will treat the sinusitis aggressively which seems to be needed. Especially before I start the chemo.  The Pulmonologist was simply guessing I had an infection and didn't treat aggressively. And will be much easier to see my PCP than to try to see my Pulmonologist again. Oncologist had ask when I'd again see my Pulmonologist. Perhaps Oncologist was responding to seeing a sicker patient than she saw on our first visit. 
Judy M

Judy,
To ease your worry about pleural effusion, my mom was hospitalized one a year ago for pleural effusion. It was due to being full of infection. She was in the hospital for nearly 2 weeks. They drained over 2 liters of fluid - no wonder she couldn't breathe! Now I know that anything can happen at any time, but 1 year later my mom is going stronger than ever (knock on wood). 
I'm also confused along with everyone else about what your doc said.  I learned quite a bit about hospice with my grandpa. Yes, the 6 month thing is true. However, my grandpa was on hospice for 6 years! He was in congestive heart failure from COPD. So, even a suggestion for hospice is not necessarily a death sentence. 

WONDERFUL news!  I only wish we could nuke Florence--please stay safe down there!

Maybe she was just reminding you of the availability, if it ever gets to the point where you've had it with treatment?  
Keeping you in my thoughts, Judy--I sure hope something kicks in for you.