Radiation with Novalis Tx

[wcrimi]

Please keep us updated. Best of luck.

[Shan1014]

19 week Post Radiation Update.

I have a new MRI from Jan. 28.  Don't see doctor until Mar.2 but have spoken over the phone.  They still believe it is showing signs of dying but... is very swollen right now.

For the past 3 weeks I have really been struggling with the growth of AN symptoms.  I have left work at this point.  Every day was such a struggle.  I finished my last stint of steroids 2 weeks ago and am now trying to get through this next stage.  I have a blog at mymediabandit.com/ where I go into a little more detail and show the difference in last 2 MRI's if you are interested but here is the list of symptoms I am struggling with now:

Fatigue - I can barely take a shower and change out of PJ's - it just seems like so much work
Numb left side face and tongue - very strong right now
Ears - ringing
Facial Paralysis/spasms - any time I am exerting too much
Nausea
Headaches
Balance/Vertigo issues
Double Vision
Shooting pains on skull - area of surgery/tumor

Hope all are well.
Shannon

[Shan1014]

Hello all,

I am now just over 5 months post radiation:

The last month has been a difficult one.  This past week I developed horrible headaches, nausea, and constant facial weakness/paralysis.  I was put on my 5th short stint of steroids.  Those have cleared up most of the headaches and nausea but the Bell's Palsy on the left side is still just as strong.  I won't be in to see a Dr. for another week and a half and that is my ENT.  Not sure if he will be able to say much about it.  It will be another couple weeks before I get into my Neuro.  That is frustrating.  I have no idea if this is something that is typically temporary and just takes a few weeks to get back to normal or if once the nerve gets bugged, it is done.  Any thoughts?  I posted that question also in the Facial Issues section. 

I have been so fortunate with having limited complications through this whole thing and am concerned that the facial weakness is here to stay.  Very bummed.
Shan

[JAnneMan]

Dear Shan, I've just read your posts and blog and I am so moved.  I was diagnosed with a 2.2cm AN four years ago and underwent 6 weeks (5 days a week) of stereotactic fractionated radiation on the Novalis.  Like you, my journey has been up and down, up and down and still is four years later.  I get new symptoms, worsening symptoms, spontaneous symptoms, and ongoing symptoms - the worse of which are the constant headaches.  I take narcotics for pain and don't seem prone to addiction - the meds simply help me function day-to-day.  I know taking narcotics is controversial, but I don't buy into the hype as they are my best solution. 

About a year after my treatment, I was referred to Dr. Robert Jackler at Stanford University who is an AN expert (he "writes the books about ANs for surgeons").  He was SHOCKED that I was treated with so much radiation.  He personally called my doctors to let them know ANs haven't been treated this way since the 1970s.  Of course my neuro was totally pissed off - "who does that guy think he is?" and I felt like I was in the middle of a battle.  Long story short, I'm at higher risk for all complications and will be for life.  The tumor showed necrosis a year after treatment and at three years out the radiologist was concerned that the tumor is enhancing (getting brighter), which can be an indication that it's turned malignant due to the massive doses of radiation.  Very few of these tumors turn to cancer, but when they do, the mortality rate is 100%.  So, I live with it and have come to trust Dr. Jackler at Stanford who I will be seeing on March 8th.  So, the journey continues.  I've come to accept that this is my "new normal" and manage my symptoms the best I can.  I try to stay in grace as much as possible, but I do slip over to fear and self-pity at times.  I wish you the very best as well as all the other AN'ers on this site!  Anne 

[wcrimi]

Dear Shan, I've just read your posts and blog and I am so moved.  I was diagnosed with a 2.2cm AN four years ago and underwent 6 weeks (5 days a week) of stereotactic fractionated radiation on the Novalis.  Like you, my journey has been up and down, up and down and still is four years later.  I get new symptoms, worsening symptoms, spontaneous symptoms, and ongoing symptoms - the worse of which are the constant headaches.  I take narcotics for pain and don't seem prone to addiction - the meds simply help me function day-to-day.  I know taking narcotics is controversial, but I don't buy into the hype as they are my best solution. 

About a year after my treatment, I was referred to Dr. Robert Jackler at Stanford University who is an AN expert (he "writes the books about ANs for surgeons").  He was SHOCKED that I was treated with so much radiation.  He personally called my doctors to let them know ANs haven't been treated this way since the 1970s.  Of course my neuro was totally pissed off - "who does that guy think he is?" and I felt like I was in the middle of a battle.  Long story short, I'm at higher risk for all complications and will be for life.  The tumor showed necrosis a year after treatment and at three years out the radiologist was concerned that the tumor is enhancing (getting brighter), which can be an indication that it's turned malignant due to the massive doses of radiation.  Very few of these tumors turn to cancer, but when they do, the mortality rate is 100%.  So, I live with it and have come to trust Dr. Jackler at Stanford who I will be seeing on March 8th.  So, the journey continues.  I've come to accept that this is my "new normal" and manage my symptoms the best I can.  I try to stay in grace as much as possible, but I do slip over to fear and self-pity at times.  I wish you the very best as well as all the other AN'ers on this site!  Anne 

I hope all is well when you go for your visit in March.  Keep us up to date here. 

[Shan1014]

Thank you for everyone's input.  I really appreciate you thoughts and support.

Wow, has this been a hell of a step in treatment.  I would take surgery again over these last few months!  And that is saying something since I was in ICU for 9 days!
I had a few week where just changing my clothes took too much effort.  In Feb., I had weeks where things were changing every hour, the left side of my face totally went into Bell's Palsy, I had so many strong shooting pains on skull, my hearing on the left side went, my double vision was changing constantly. It was crazy!  And I couldn't get the attention of either of my Dr.'s.  Finally after several calls, one of them put me on decadron and for all the complaints I have about that stuff, it sure helped get me out of whatever dark hole I was in.

Now, the headaches are mostly gone, the skull pain is mostly gone and I actually have some thoughts and ideas. I finally got the attention of my doctors and have had a new MRI and lots of appointments.  At one point a few weeks ago, my Neuro felt I should have surgery.  But after viewing the new MRI, they decided against it as long as I stay stable.  Which I have been for about 3 weeks now.

With one exception.... I have gotten terrible double vision which in turn has affected my balance quite a bit.  Doing anything has become taxing because of it. 

The dr. said to imagine the black  parts that are inside the tumor are like honeycombs that eventually the tumor will collapse on itself.  Boy, I sure hope so.
For now, I need to learn to deal with SSD and the Bell's Palsy... I sure hope those come around.

[Jim Scott]

Hi, Shannon ~

Thanks for the update.  I'm sorry that you've had to struggle with various unpleasant problems post-FSR but pleased to read that things are finally improving for you. 

As you know, I also underwent debulking surgery followed by (pre-planned) FSR.  I had 26 sessions over 5 weeks and received a relatively low amount of radiation, overall.  I was blessed to not have any problems and that the remaining tumor showed necrosis within a year of the FSR.  In any case, I'm delighted to learn that you're now in the late stage of your FSR recovery with, we hope, the worst behind you and better days ahead! 

Jim 

[Shan1014]

Hello all,

I am just a few weeks shy of my 1 year anniversary of have Radiosurgery with the Novalis TX.  My tumor was considered large for radiation.

I am anxiously awaiting my next MRI.  Last Feb. the you-know-what pretty much hit the fan.  Not much has changed symptomatically since then other then I feel better and am not on the couch all day.  I am just waiting for this thing to die.  If it is.... it is taking it's sweet time.  I am still unable to work, applying for long term disability that I hope I won't have to use very long, and trying to get back to the world of the living.

Radiation was tough for me.   Not the actual radiation itself.... that part was easy, too easy.  It was the swelling of the tumor that got me 4 months later.  It probably didn't help that my tumor was larger than most  that go through radiosurgery.  My prior scans show black spots in the center but no change in size either way.  But...I am due for a new one.  Hopefully that will have some answers.  My tumor is very much attached to my brain stem and therefore, was damaged a bit by radiation. 

At this point, I can't say I am a huge fan of radiation for large tumors but... then again...I can't say I like surgery any better either.  It has been one long haul and it still isn't clearing.
Be well everyone,
Shannon

Shannon, Removed personal contact info but folks can PM/email you here on the site/forums.  Continued wellness wishes to you!  Hoping my 5 yrs post-radio wellness helps you with your post-radio journey. Hang tough! Phyl