CSN Login
Members Online: 7

radiation treatments are over now what?

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Feel more scared now. My sisters radiation treatments are over and now Im feeling more overweld than before. Is this normal? Im afraid of the first MRI to come. She had to stop temador a week early because of low platlet counts. Now if the dont come up by next week they will make her hold off on the avastin. Good God the GBM grows so fast like wild fire they say what will happen. Has anyone had this happen?

deja98408's picture
deja98408
Posts: 12
Joined: Apr 2011

The same thing happened with my father. He had to hold off on radiation and temodar a few times because of low counts. The temodar stopped working after a while. He had to have another surgery. They put him on avastin and some iv chemo he got every two weeks. They had to stop that because he developed another tumor. He has not been on anything for the past 5 months. He goes for an MRI in a couple of weeks. He is doing okay but sometimes his mind is scattered, he will be fine one minute and go off and not make any sense the next. When looking at the computer, sometimes he cant see everything on the screen. I found out friday that I only have one more week of radiation. I thought i was supposed to have 6 weeks but they are telling me only 5 weeks.... so, i am worried about that. I meet with them on Monday. This is all a very overwhelming, confusing situation. Any and everything can go. I know it sucks but that is how this cancer works. The only thing we can do is pray for a positive outcome. I wish I could offer you more insight. I mean I have been thru this with my father so, i kind of know the in's and out's of this cancer. Its not fair at all. I cant help but wonder how in the heck me and my father have the same cancer...... Its normal to feel overwhelmed. Hang in there and just keep thinking positive. I talk to my tumor all of the time. i tell it that it cant live in my brain, go away. The mind is a very powerful thing. I know a few people who were given months to live..... they were given only months to live over 25 years ago. They are still living normal lives. Anything can go. Just try to keep your sisters thoughts positive. The mind is very powerful. Hang in there. I wish i could be of more help to you. Hang in there.

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

When reviewing EVERY 8 week scan, when something comes up that says "flair" "enhancement" or which concludes "may just be from treatment effect" take that as serious as if it were a recurrence.
It is NOT as serious as a recurrence BUT can cause something called "radiation necrosis".
This happens around 12 months afterthe treatments were done normally.
In our case it was nearlyEXACTLY 12 months.
It caused the cognitive problems in my wife that have devastated us.
The dementia is hard to clear up but can SLOWLY improve...a little.
The ambulatory problems from the necrosis can be cleared up with avastin.
At least in the case of my wifes ambulatory problems, she was walking again 2 days after the first infusion.
But, her cognitive problems are heartbreaking..
It is WORSE than recurrence in my opinion.
But go overeach radiological report with the oncologist and ask him to stay one step ahead of the necrosis.

sadinholland
Posts: 240
Joined: Apr 2011

Ok that is exactly what they told us Distancerunner XC! My husband shows no sign of anything being wrong though. We are at 8 months since his last radiation treatment. 10 months since surgery, and he is still taking chemo pills, just increased to 21 days a month ago. On his second 21day cycle. So you are saying with this enhancement they are seeing that it's only a matter of time I will notice side effects from him? Please tell me more!

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

For exactly one year AFTER radiation treatments, we kept on getting these reports saying that the white masses seen in the MRI were as I mentioned..."Treatment effects"
We all breathed a sigh of relief every time that it was this instead of a recurrence.
About a year later, it was decided that a biopsy needed to be done to insure that this "treatment effect" was indeed that and nothing else so a biopsy was performed.
Sure enough it turned out to be treatment effect.
About 4 or 5 weeks after we got home, I noticed one day that my wifes voice had raised a few octaves, almost childlike.
Then, she started not talking to me at all as we watched TV or anywhere else for that matter...
Then, one day she fell down the stairs, she had lost all control, balance and her cognitive abilities were severely impaired.
We hurried a phone call to our wonderful neuro-oncologist who saw right away that it was radiation necrosis from the radiation treatments of a year before.
He immediately prescribed avastin

http://www2.mdanderson.org/depts/oncolog/articles/09/5-may/5-09-2.html

Within two days, she could walk again and even dress herself, but SHE NEVER improved MUCH cognitively.
The docs want us to go through a psychiatrist MD (tomorrow) to see if the trauma is affecting her cognitive abilities before they prescribe any occupational or physical therapy.
Ask questions about "treatment effects" and don't automatically celebrate that it is that instead of a recurrence.
The damage done from the treatment effects was WORSE than the cancer itself.
DEMENTIA is WORSE than glioblastoma.
And when the cognitive problems begin, another front in the battle begins and it is absolutely heart wrenching.

sadinholland
Posts: 240
Joined: Apr 2011

You know why don't they just tell us these things???????We as caregivers, and the patient, have the right to know. Thank you for the information. Unfortunately, my husband will not allow me to ask questions at the doctor's office. All because when he came home in Sept. all he did was sleep and I called the doc because I was very concerned. My husband got so upset that I called he said I am not to ask any them any questions. That it is his illness not mine and if I started asking questions again he would not allow me to go back with him to see the doc. I tried to explain it is out of concern and love that I ask questions and that although I am not going through it physically like he is, I am going through it mentally and physically in a different way. That I am right there beside him every step of the way going through it with him. Even when they found this flair a month ago, I was not allowed to ask questions. When I did and the doctor left the room, my husband let me know not to ask anything else or I would not be at back there with him at his next appt. Unfair right!!!!! So with that I am glad to get as much info as I can from here. Thank you!

When you say a year later, do you mean a year from the surgery or a year after the radiation treatment? We will be a year out from surgery in July and a year out of radiation in Sept.

sadinholland
Posts: 240
Joined: Apr 2011

Thank you for the information.

sadinholland
Posts: 240
Joined: Apr 2011

DistancerunnerXC,
I will keep you and your wife in my prayers!

As well as everyone that is fighting cancer along with their loved ones!

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Trying to stay postive here. My sister ended up in the hospital with SEPSIS. The port got infected. She is neutropenic on top of it all. She is starting to look better, but the numbers are coming up really slow. As been a scary week, hoping to have a better one this week. It isnt time for the first MRI yet.So we are just working on getting well from the infection.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2015 © Cancer Survivors Network