Radiation with Novalis Tx

[Shan1014]

Hello everyone,

I have been checking on the AN issues portion of this forum so much I totally forgot there were other topics!  And unfortunately I have discovered the need for radiation information.  I just wanted to thank you all for all the good information that I have found here.

I had surgery on the 9th of March and through an MRI done at the end of July, they found the AN was growing back quite fast.  The bummer is that it took forever for me to get an appointment about it, then the imaging facility didn't add the contrast pictures to my CD!  So some more time came off the clock.  Then I met with the Radiation Oncologist who felt the Novalis Tx seemed to be my best option.  Anyway.... long story short.... my insurance dragged their feet on approval and I am having a hard time getting appointments in a timely matter.

Here it is Sept. 11 and I have had another MRI yesterday, am scheduled to have a CT scan and Mapping Mask done on the 13th.... then I can schedule Radiation.  Sheesh!

I just wanted to let anyone who may want to know - I will be sharing my experience with Stereotactic Radiation with the Novalis Tx on my website if you would like to keep an eye on it:
mymediabandit.com/
Thank you & I wish you all well,
Shannon

[richcooks]

Shannon,

  Good luck I look forward to reading your journey.  Do you know how many treatments you are having?

Rich

[Shan1014]

Thank you  Yes, I forgot to mention that I am having  5 treatments in 5 days. 

[Shan1014]

I finished my last of 5 Radiation Treatments on the Novalis Tx today.  I had a good week of treatment.  It was a very easy experience.  I just  hope it worked.  I am going in 6 weeks from for the follow up MRI.  Typically they wait 3 months but since mine was growing quite fast for an AN, they cut that in half.  I am very anxious to find out how it went.  Please feel free to check out my blog on "Radiation"  at
mymediabandit.com/
Thank you

[jbbrown15]

Shannon - I liked reading your blog.  I am also on the young side for ANs (33 years old) and had a lot of pre-diagnosis symptoms.  My AN is 2.9 cms. 

Yours was definitely bigger.  Did you have increased intracranial pressure?  Enlarged ventricles?  I felt like at least one doctor was very dismissive of my headaches and full head/whooshing ear feelings upon standing and seemed to think that I would continue to get them after treatment.

I'm waiting for the doctors at Jefferson (Phila) to finish my fsrt plan and just today the facial numbness spread to my tongue.  I've been worried that mine is a fast growing AN. 

How are you feeling now?

Jean

[Jim Scott]

Hi, Shannon ~

Like everyone, I'm hoping the radiation you received was successful in arresting the tumor's growth.  It usually is.  My 'de-bulked' 2.5 cm AN was treated with FSR (26 sessions) and responded by conveniently dying (necrosis).  I trust yours will, too.  FYI: you have a very interesting blog.  Well done.

Jim 

[Shan1014]

thanks Jim

[Shan1014]

Hello,

Just an update.  I am 2 weeks post-radiation and will be starting back to work full-time Monday.  Not sure if that is the best thing to do but feel as if it may be my only option.  I am still a little tired and experiencing enhanced AN effects - double vision, poor balance, and facial numbness.  Not to mention the return of AN headaches.  I am hoping they will get better soon.
I hope you all are well.
Shannon
mymediabandit.com/ - click here if you would like to read about my experience.

[Shan1014]

This past week was a tough one.  I was taken off the steroids for a second time and the headaches really set in.  I worked but it was difficult.  My hearing is hanging in there although It feels full and plugged.  My face and tongue are quite numb and my double vision is strong.  My balance and vertigo are also still enhanced.  But the constant headaches are the hard part.

I have 5 bald spots on my head.  3 are pretty large and a couple are just dime sized. 

I hope there is a turn soon where the swelling goes down.
Hope everyone is well.
Shannon
mymediabandit.com/  Website where I share my whole experience

[Shan1014]

Hi,

I am over 5 weeks post radiation.  Doing OK.  Really struggling with working while experiencing enhanced AN symptoms, especially headaches.  I posedt a thread in another area asking for help with headache pain.  Is there something that is working for you?  If so, please share with me.

Thank you,
Shannon
mymediabandit.com/   Radiation Blog

[Shan1014]

Hi Everyone,

I come to you with good news today.  I had my 6 week MRI/Evaluation yesterday.  It hasn't grown for the past 2 months and is showing signs of shrinking. There is even a black spot in the middle (small but it counts!) where the doctor said it has no more blood supply and has died.  He also said little by little all the AN symptoms will slowly go away.  I can't wait!
I am so excited to get good news for once.
Shannon
mymediabandit.com/

[Jim Scott]

Shannon ~

I'll make this succinct: congratulations!  

Jim

[Shan1014]

Hello all,
Just a quick update. I am 3 months post-radiation. I had one more quick stint of steroids about 2 weeks ago to make 3 total. My doctor mentioned that often the greatest swelling will occur in the 2-3 month stage after radiation. I know when inflammation is about because my hearing on the left goes out completely and I am not feeling too swell . My doctor puts me on a 5 day stint of full steroids and then a four day taper. It seems to do the trick. I am still amazed that I have been able to retain most of my hearing after having  a golfball sized tumor with surgery and radiation in the past year.

So far so good. I continue to have typical AN issues but feel as if I am on the road to  recovery. It has been a tough journey and I won't be sad to see 2010 end, but I have also learned a lot along the way. As always, if anyone contemplating radiation with Novalis TX would like to email me with questions, please feel free. Thanks
Shannon

[Shan1014]

Hi to anyone reading my journey,
I am just about 4 months post-radiation.  Things have been going pretty well until this past week.  I think it is both good and bad.  Good, because I think my tumor is shrinking.  Bad, in that while it is shrinking, it is also moving some nerves around.  This past week, I have had several spasms/paralysis on the left side (AN) of my face.  Also, lots of twitching on my upper lip and eye lid.  When I look in the mirror my eyes are not symmetrical . Nor is both sides of my face. My friends don't agree, but they also said my hair wasn't falling out when I clearly had 5 major bald spots on my head.  So, I am not trusting in that.  My doctor has scheduled an MRI this week to check things out for sure.  I hope it is shrinking but I hope it doesn't take my facial nerve with it!

Other than that things are OK.  The fatigue is still sticking around but is workable.  I often take naps and lounge around resting on the weekends to prepare for the week.  It is getting there.  Slowly but surely it is getting there.

[Jim Scott]

Shannon ~

Thanks for the update but I'm sorry to learn about the facial nerve complications that are giving you some discomfort and angst.  I trust that the upcoming MRI will prove the demise of your AN.  Please keep us updated.  Thanks.

Jim