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Hope everyone is doing well.  While my dad isn't celebrating a huge milestone, just yet, some day I hope I can post that he is.  However I have a small milestone to share he has finished the first round of chemo/radiation mix.  YAY!  I am so proud of him and so glad the first hurdle is now complete.  He was so lucky, barely got sick, lost 4 lbs since May and the only real compliant is some difficulty swallowing.  While I realize their are probably many more bumps in our road I feel like I can finally catch my breath a bit.  Working full time, 5 master classes, holding down 2 households, and the emotional strain, its about time I come up for some fresh air.  In the meantime I just wanted to thank all those who have supported me through the past several months. 

 

I was wondering how long you have waited before they did another PET scan once you were done with treatment?  The oncologist is talking 12 weeks, which would put us right by Christmas and my big 30 bday!  I hope and pray everyday that it worked, and in some selfish ways I want to post pone it to the first of the year, but then again it could be good news that we would want to hear to make the holidays even better!


Also did any of you develop radiation pneumonia?  If so what were some of your symptoms, any recommendations to be mindful of?

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Hey KDD! Glad to hear you and your Dad are doing so well! 12 weeks post-radiation for a PET is pretty standard. It takes a while for the radiation to have full effect- after you stop treatment, the radiation is still "working", so they don't do PETs right away. I don't think it's a big deal at all to postpone the PET a couple of weeks until the new year. Scan dates aren't set in stone, they're just general guidelines. My mom's scans are usually a few weeks early or a few weeks late, depending on what's going on. If it will be bugging you over Christmas, go ahead and get it done. Conversely, if it might mar your holidays to get a bad result, postpone it until the new year and enjoy the holidays to the fullest! Congrats on all your wonderful news!

Hi KDD, glad you are doing well. I don't have much to add but I had 35 radiation treatments in 7 weeks and didn't have any major problems. It seems there is some collateral damage from the radiation but it's a small thing compared to the alternative. I seem to get pneumonia/Bronchitis about twice a year due to immune system compromise. I got a pneumonia shot and get my flu shots every year and live as healthy as possible. Breathing exercises(Pursed lip breathing, walking) help a lot too. Good luck, God bless and keep the faith...

David

 

Hi!  Glad you have some "breathing room" and a break in treatment.  Sounds like you're carrying a big load.

 

I'm responding partly because I recently had radiation pneumonia.  The symptoms were a "wet" cough, fever, flu-like symptoms and shortness of breath.  The pneumonia developed 3 1/2 months after I finished 7 weeks of daily radiation.  Was feeling great in my "good time" bought with aggressive treatment, then was hit with that out of nowhere.  To top it off, drugs prescribed for the pneumonia made me really sick.  I came into this trip thinking treatment would lead to some good time followed by a decline to the end.  Now I view it as a series of ups & downs.  I savor every good minute but take not one of them for granted.

 

Best luck to you and your dad. 

Hi KDD  CONGRATULATION  to you and your dad , heres hopping many more  winning moments

Hi everyone!  Sorry I have been MIA for a bit...The end of grad school has been rough!  However I made it and I am officially done!  On a more serious note, Thursday is the day...we will get the results of my fathers PET scan...I am nauseously sick to my stomach in anticipation.  I do know this much...The tumor has in fact shrunk.  My dad ended up having to get a CT scan a few weeks back to check for radiation pneumonia...which is a good sign, but something new appeared on the lower lobe of his lung, it doesn't look like cancer nor an infection...they gave him an antibiotic in case but frankly the dr has no idea but the PET scan will tell us for sure.  I suppose I should be happy and it would make for all of this to be a bit easier, but I am sooo very nervous for the results.  I have my fingers toes and anything else crossed that we get good news.  At the moment I do not believe he will be a candidate for surgery since he has COPD they are concerned he may really struggle with breathing if they remove part of the lung.  I was wondering how many of you did not have the tumor removed?  If so what is usually the next steps, a holding pattern and repeat PET scans?  As always I appreciate all your feedback!  

I hope everyone has a wonderful holiday!   

Hi There:  I am one who could not have surgery due to location of the tumor...........theygave me a 24% chance of coming off the table alive, so naturally opted or chemo/rads......Also have been diagnosed w/early stage COPD.

Breathing has good and bad days, as we all do, just a little added attraction w/the copd......am walking every day, regardless of weather or other outside factors, as it really seems to help keep all trouble breathing at bay.

Had 3 sessions of chemo weekly and daily rads concurrently for treatment........was fortunate not to have been ill much, but cough is still here, and short of breath most of the time.  Best advice I can give is to really try to work through it, even in small steps.  We're all fighters, so it works out pretty well..............

Had CT ea/3 months for 2 years, and then to every 6 months.  PET scans every 12 months now, unless there is something out of ordinary/complaints..........BTW......am now 2.5 years from diagnosis, and so far so good as far as results............You are correct about the 'holding pattern' or watch and wait...........no news is definitely good news there............

We're all in this thing together so let us know if we can help at all.

 

Sarge 

   

Thanks Sarge.  I am glad to hear all is well on your end.  I expected we would be in the holding pattern.  My dad is very much like you...breathing has good and bad days.  I keep making him walk but its getting cold out (We are in NJ) so we have a treadmill for him but he has yet to step foot on it...

You know, thinking on what you said about your Dad not even getting on the treadmill.........and don't know his age, but if he's anything like me (I'm 63, and somewhat old school), all you have to do is challenge him.........tell him the only reason he's not doing it is because he CAN'T do it because he's too old, etc., etc., etc.!

Can guarantee you my wife and kids have used that on me several times and sure enough, there went the old man.........even walked 16 miles of the Marine Corps Marathon in October with LCA...........

So you see, just have to motivate him the right way............hope it helps........

Sarge

(Just in case you need a witness to tell you that Sarge indeed walked 16 miles of the MC Marathon - I was there. If I understand correctly, his wife and kids were ones who made him stop! :-) )

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