MRI after 3 months of FSR,

[Peggy]

Today I had my first MRI after my 26 radiation treatments which I finished on Dec. 13.  I have the films and the darn AN looks the same to me as it did before treatment,  is it too soon to expect something different?  I was hoping to see some gray area but it was still very white.  should I not be dissapointed , am I expecting too much too soon?  I see the doctor at the end of this month, I guess I'll have to wait for his input.  I'm trying to be positive about all of this but sometimes it just sucks.

peggy

[sgerrard]

Hi Peggy,

It's too soon. 

I just got my six month MRI, and it basically shows no change. Same size, same color. My ENT was happy with that, he said he often does not see darkening, and no growth is the main goal. As I remember, your AN was close to the brainstem, so no swelling is an extra good thing.

So besides "sometimes it just sucks", how are you doing? 

Steve

[Mark]

Important thing to remember about MRI's is that they are snapshots in time which the AN's reaction to radiation is neither aware of or concerned with. The standard expectation created by doctors after treatment is that the AN will show up as spotting with a darkening center and then revert to a white look which reflects scar tissue as opposed to the initial white under contrast enhancement. In a perfect world, each of us gets to see this process happen which is reassuring and gives us confidence that something is actually happening.

Unfortunately, the speed an AN reacts to radiation is dependent on many variables primary of which is at what cycle its cell replication rate was at the time of treatment. So when one gets to the usual 6 month MRI it is very possible that the AN will once again show up white and this can be discouraging. In more cases than not , it has already reached the scarring stage and the darkening / spotting stage of necrosis in the months between treatment and that "snapshot". Alternately, I think 3 months may be very early to take an MRI especially after FSR where the intensity of the "killing" dose is less than with radiosurgery machines

A  neurosurgeon well trained in radiosurgery can interpret how the AN looks on the MRI and if they felt good about the progress I would be OK with that even though the picture may not be as dramatic as I would like to see.

I do think the hardest part of the radiosurgery choice is the wondering if something actually happened given the treatment is generally easy. Very few folks who have surgery have to be convinced if they went through a medical procedure  . So, yes, absolutely, it does suck when we don't get some sort of hard confirmation that the booger is dying, but hang in there , it will happen 

Mark

[Peggy]

I thought 3 months after treatment was a bit early to see anything, I have been feeling not so great so I thought maybe something was going on.  I am soooo tired, I go to bed early and still wake up exhausted, I did find out that my thyroid is not working up to par, probably due to radiation.  hopefully taking thyroid pills will help with the tiredness.  I also get lightheaded at times, mostly when I go to lay down, it doesnt last long , I can deal with it.  I just dont feel like my normal self, no energy for anything.  would a vitamin help?  I mentioned it to the radiologist in Jan. and she suggested sleep.  Easy for her to say, I'm not going to give up, so I push myself to go to work or whatever I need to do, then I sleep.    I can't sit around and wait for this to go away or until I feel better, thats ridiculous.  any suggestions on how to deal with the tiredness would help. (besides sleeping).

thanks

peggy

[Patti M]

Hi Peggy,

I had 25 FSR treatments for a 2.8 cm AN in 2005.  My last MRI in Dec. 2007 showed a few dark spots but there wasn't really significant change from 2006, except for the most important news that it wasn't growing.  I agree that 3 months seems very soon to expect to see changes.  On your next visit, you might ask your doctor what you should expect to see happen to this tumor in the follow-up MRIs that you will be having.  As for the tiredness, you're taking thyroid meds and if you feel those aren't improving things don't be afraid to contact your doctor to find out what's going on.

Patti

[tdworkin]

Peggy,
I had the three day does by cyberknife rather than the 26 FSR treatmenst. (Just couldn't see me hauling @$$ to Phillie every day for a month. Flying to Stanford and enjoying a week in CA was way more fun, too.)
Anyway, to support your journey, I can report that someone else out there is experiencing the same thing- I have had that exhausted feeling, too- can hardly do anything after a day at school- just want to eat dinner and go lie down. I am not getting enough exercise and am gaining weight. And, that has never been my problem. For decades, this skinny type-A very busy girl  could always eat anything and never gain an ounce. Now, I seem to have no energy and therefore am moving less. When I can't sleep, which is most nights, I get up and have a glass of milk and something crunchy. I could do without these calories as I know I am not burning them off.
I am also plagued by headaches. I have had them constantly since November with only one day off (I actually had NONE on Wednesday! What an exciting moment of pain free recognition! Of course, I got my hopes up that THAT was the end of them but then I woke up Thursday and there it was again.)
I also get quick trigeminal nerve stabs anywhere from my ear down my cheek. They are fast buggers- like a second long. Sometimes I get a dozen or so in a day. Frequently, they are a few minutes apart, several at a time, then they disappear. SOmetime they are pretty strong and make me jump or twitch- that usually happens if I am still, like reading or watching a video.
So, exhausted, unable to sleep, eating more than necessary, not exercising enough and headaches and twinges... and did I mention the tinnitus is louder than ever?? This is what I have been dealing with since the CK. SOund familiar?
I also had an incident last week that woke me in the middle of the night causing a trip to the hospital (the pain was UNBEARABLE).  The CT scan showed bleeding at the tumor. Scary. Then my MRI  showed no change in size, thank the good Lord, but no evidence of it dying YET.
I have heard from others who haven't seen evidence of necrosis for a couple of years- and some say it shows on their 12 month MRI.  So, 3 months is early. Being patient is not one of my strong suits- perhaps you are in the same boat. Unfortunately, we are powerless to speed up the time line. I try to think positive thoughts about it rather than worry. Like every time I get one of those trigeminal nerve zaps,  I think "it just died a little bit !!"
So, I guess my two (ok, this got long, maybe it's ten) cents is... this recovery journey is a road we must travel, a long road, with some bumps for some of us. I am hoping it smooths out any day now so I can be like my friend who did the FSR in Phillie last January.  He has been completely symptom FREE ever since, the lucky duck!! Wouldn't THAT be great for all of us???
Here's to quacking up a storm sooner rather than later! Hang in there.
T

[jb]

Peggy,
You might be feeling poorly if your tumor begins to swell from the radiation.  This was a big issue for me, as I experienced most of the symptoms you and others mentioned - fatigue, headache, increased tinnitus (still have it), ear stabbers, etc.  Might talk to your doc about a course of steroids if it's a major problem.  Not sure if that works with thyroid meds though.

[ppearl214]

Hi Peggy,

I'm not sure if you saw this thread but this has been shared in the past and is a good time to repost it for those new here on the site. This link will bring you to a thread where there is a link for a "Brain Tumor and Fatigue" Brochure that may be of interest. It seems that the fatigue is not only common with our treatments (regardless of which treatment) but also common to brain tumor patients (benign and malignant). It may be worth a peek for you.  File is a .pdf file which requires Adobe Acrobat or Reader so you can read the file.

http://anausa.org/forum/index.php?topic=3462.msg37212#msg37212

One of the authors of the brochure, Nancy-Conn Levin, is getting ready to speak to the ANA NJ support group/chapter (I'm bummed I'll miss it) and hoping you find this helpful.

Hang in there... this, too, shall pass....
Phyl

[Sidro55]

I finished my 28 treatments in Oct. 07 and my 3 month MRI also showed no change. I too feel totally exhausted most of the time. The roaring is getting worse and to the point I can hear very little because I was already deaf in my left ear. My hearing aid is not giving me much help so I am getting very depressed. Oh well it could be worse!

Sid

[ceeceek]

Yes it is fustrating even though at the 5mo mark I am showing signs of death....I wish it were gone..but the fact that it has not grown is a big bonus....so try and focus on that,,,I am at the point now that really I am use to the idea and just think of it as a scar but located in my head rather than say somewhere else...as long as it is dead..I do not really care if it stays the same and in my particular case as my tumor shrinks it causes problems for me as well as it is intertwined among various nerves..so it it swells..it stretches things,,and as it shrinks it pulls them back....either way not good,,so staying the same is fine with me...
However,
I also get tired and the link that pearl provided is a big help. I think I get tired more from the tumor itself than the actual treatment..remember your body is trying to heal itself..just like when you have the flu or a cold, it is constantly working your immune system. I would suggest upping your daily vitamins,,dont go crazy but get some basic supplements, and you might try acupuncture. I have used it very succesfully to boost my immune system so I do not get as fatigued, and so far so good. I also think that the stress of just dealing with the issue takes its toll, so I try and destress as much as possible and think positive.
Even though you are tired excercise, even if it is only walking around the block..this really helped me after surgery and cyber....I had to drag myself initially but then it got easier and I felt better.
Mental attitude really makes a difference and not trying to sound overly optimistic,,,this is a serious condition and can be really depressing, but it is also a matter of perspective so think happy thoughts as much as possible. You are doing great! you took action to treat!! It works!! your tumor is not growing!!! You will indeed be fine!!!
Nothing but good thoughts to you
Ceeceek

[ppearl214]

nice post, ceecee!   Good to see you and hoping you are hanging tough!   glad the Fatigue brochure helped... has also helped me in many ways, too.

Phyl

[Peggy]

thanks everyone,

the brochure about fatigue did help too.  I go tue. for another hearing test, and then on thursday to see the neursurgeon, I don't know what he'll say, I can see for myself that its the same and I have a copy of the report .  I'm not sure if my hearing has gotten any worse, its possible I really do have a hard time understanding words, I know someone is saying something but I can't fingure it out.  I guess down the road I'll think about getting a hearing aid.  I have time, the only person that gets annoyed about repeating themselves is my 15 year old son, but at 15 I think he gets annoyed about most things , oh well.    one of the things I really hate about all of this is having to get those stinkin MRI's,  they are hard for me to do, and I'm sure I'll have to get another sooner than later. 

[calimama]

Hi Peggy,

Have you had any other side effects ... headaches, dizzy, facial problems, hair loss etc.??

To all....
Does GK or CK cause fatigue/exhaustion too??

thanks!

[ppearl214]

hi calimaman

in regards to your fatigue question... many discussions here about it (you can do a "search" option on "fatigue"... will see it's numeorus).....

For me, I did have enhanced fatigue immediately post CK... for approx the first 6 mos... then, it leveled off. When I push too hard in daily life, it will enhance on occassion, even 2 yrs post CK... but, I have to believe it pertains to other issues (ie: I have FMS, my stresses at work and home, etc).

Now, there is a brochure that discusses Brain tumors and fatigue... regardless if the growth is malignant or benign.... and regardless of what type of tumor treatment has been done (ie: surgery vs. radio). I've posted it in another thread (http://anausa.org/forum/index.php?topic=3462.0) and it has seemed to help some as it gives good insight and remedies to counteract the fatigue. May be worth a peek.

Phyl

[calimama]

Phyl,

Thanks for this.

I will check out the site (which i recall seeing referenced before but this time i will take a peek!).