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NSCLC with mets to brain and T10 - radiation question

LunaLady
Posts: 25
Joined: Mar 2019

My husband went thru surgery and chemo in 2017 for lung cancer and was in remission at the end of treatment.  However, in a span of 6 months, they found (thru a fluke) 2 tumors in his brain and a larger one on his T10.  The doctor told him if he did not have radiation (gamma knife strike) on the brain ASAP, he would have 6 months to live.  So he did that.  Then did 10 rounds of radiation on the T10.  Shortly after the brain radiation, he started having nasty headaches.  The doctors attributed that to the swelling caused by the radiation.  As we had been told this was a possible side effect, we accept that.  The headaches got better then he started having the side effects from the radiation on the T10 (swollen esphogus). In the meantime, he has started experiencing headaches again, as well as light nose bleeds.  We have reached out to the doctors office and have been told this is a normal side effect.  We are also (like the rest of the country) experiencing very weird weather so I wonder if part of this is allergy/weather related.

He has a doctors appointment this Thursday. Because of that, I had not called his doctor again.  They have not done the next scans yet to see if the radiation worked.  We were told he needed to wait 6-8 weeks from the last radiation before they could do that, to allow the swelling to go down. 

Has anyone else experienced this where a side effect will go away and then a week or two later come back?  I know headaches can be caused by many things but that was one of the first symptoms the doctor asked about.  That was also one of the things they told us to watch out for - headaches that didn't go away with an OTC painkiller.  Some of these aren't or are taking a long time to ease. 

I am concerned the radiation didn't work and the tumors are growing.  As they are in the cerebellum, I am watching for loss of motor function and have not seen that yet.  However, I am seeing issues with processing words and memory issues.  Could it be chemo brain/fog?  Absolutely.  But I am concerned it could be something else. 

I know the other members on this board are not doctors and ultimately his doctor has to order the next round of scans.  I guess maybe I am looking for others experiences.

Thank you

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

for your husband and you.

LunaLady
Posts: 25
Joined: Mar 2019

Thank you. His doctor is ordering the next round of scans. I made sure he knew all of the symptoms. The holiday for in the way but then plan is he will have an MRI sometime today so the results are back and ready by Thursday for his next appointment. 

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

Hoping Thursday brought your husband and you good news.

LunaLady
Posts: 25
Joined: Mar 2019

Because of the holiday, the MRI with contrast was not set up in time to get the results last week.  The MRI is set up for this Thursday at 7:30 in the morning.  If there is anything negative, they will call us right away.  I am thinking, even with the stat order, we won't hear anything before Friday at the earliest.  If it shows nothing, they won't call.  Which means I will be.  The waiting is the hardest part.

The doctor he saw on Thursday doesn't seem too concerned but his regular oncologist was more concerned.  I felt he listened to my description of the symptoms closer.  That could be my paranoia.  This will be the MRI on the head only and they will do one of the vertabrae later.

I will reach out next week when I hear something.

Thank you!

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

That is the only way I found to get through the waiting. Yes it sucks. I willing be thinking of you guys. Let me know how things go ok?

LunaLady
Posts: 25
Joined: Mar 2019

and have several things that have to be done over the next few days so will be able to keep busy.  Thank you so much and I will let you know when I hear!

LunaLady
Posts: 25
Joined: Mar 2019

I wanted to let you know the doctor did call on Friday with the MRI results.  I was going to call them on Friday to see if they were there - the whole we will call only if there's a problem - didnt work for me.  The doctor called my husband to say the MRI showed dramatic improvement on the brain tumors.  Now whether that means the tumors are gone, shrunk or just haven't grown, I am not sure.  I will ask those questions on Thursday before chemo.  We won't have the CT results back until, any earlier than today, but of the tumors, the brain was the bigger concern.  I know the T10 is a concern, but I was more worried about the brain.

Once we have more info on the rest, I will write again.

Thank you for your concern!

LunaLady
Posts: 25
Joined: Mar 2019

The CT scan was also showing improvement! We still don't know exactly how much improvement or what that means in terms of further treatment or monitoring.  His doctor will be back in for his last chemo appointment and we should get all answers then.  I have a list of questions started to ask him then.

We will take whatever good news we can get at this point.

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

May the good news and improvement continue!

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