HI Becky,

I am an 11 year survivor.  Through the years, I have tried Zoloft beginning with 50 milagrams, the dose has to remain low, because I get headaches.  Also, take 2 milagrams of Xanax when needed to help with my over the top aniexty, and seizures.  Also helps me to get out of my Home, and be social.  I am hoping and praying, believing that you will get the correct treatment.  God Bless, Elaine Murphy

Things are...okay. You know how it is...I'll email you. Been wondering how you're settling in! Hope things are good with you.

Hi Becky,

Hope you're doing well :D Would love to hear an update from you! 

- Javi

I had a frame-based biopsy, so ended up with a few small puncture wounds from the where the head contraption clamped on, but they were temporary and healed quickly. The NS made an 1.5" horizontal incision over my right ear and the burr hole was covered with a titanium plate as well like yours. I can feel it and it does make wearing glasses somewhat uncomfortable.Thinking of trying out contacts.

I am sorry to hear and also surprised that you still have soreness. My NS didn't really give me a timeframe on how long the area may be sore for. All he said really was that it will be sore for a long while. It took about 2.5 months for the numbness to go away and I think for the muscle to sort itself out. However, to this day, I still can't open my jaw as wide as before so it makes eating a burger sort of tough...lol Regarding the itchy nerves, I can see how that would be annoying. You're biopsy seems to have been much harder on you than the biopsy I had. It seems that the doctor never tells you the whole story about recovery.

I'm not on anything at the moment. The neurologist that I saw when I was admitted originally did want to put me on anti-seizure meds, but felt that since I haven't showed any signs of having seizures to best hold off on it. He said the side effects at this point in time would outweigh the potential benefits. At the moment though, I feel like I'm back to square one and am just waiting to find out something more concrete. Everything just seems so up in the air.

Hi Becky, yes, I had my biopsy this past February. For the most part, I physically feel fine now except for the occasional pain around the area where the biopsy was done. Also, I still can't really sleep on the right side of my head for too long as it gets sore. It took me about 6  to 7 weeks to physically kind of get back to normal and about 10 to 12 weeks to kind of get my energy back to where it was before the procedure. The main issues I am having right now it seems is with memory and concentration. I notice that I am more forgetful more so than I normally am, it takes more effort to articulate things, and I have trouble concentrating on tasks. 

If you don't mind me asking, what kind of biopsy did you have?

Hey Becky! Hoping your really well and feeling great.....

To answer your question - Nope. We have absolutely no idea. Surgeons told us 'astrocyomas' are very unpredictable, sometimes they can stay stable for ten years and then suddently start to grow. The first neurosurgeon as saw (who we decided not to stay with) wanted to put Tess on radiotherapy. She told us "look I have a patient with the same tumor, very large, shes had it for 18 years". I think she used that as a bargaining tool to convince us to not have surgery and just get radiotherapy because 'it could stay stable for 18 years'. Sorry but that is 1 in a million. She should not have used that story to try calm us down. Getting bit off topic here... anyways we think the answer is no. Sometimes they grow, sometimes they dont. We have no idea :( After Tess's surgery, her surgeon wanted her to have scans every 12 months... we werent happy with that! It seems like too much of a wait in between scans.. so Tess has scans every 6 months. They tend to want to extend the wait the longer you go on... soon it will be 12 months.. then 18.. and eventually every 5 yrs (if its nice and stable). I cant imagine waiting 5 years.. to me the longer you wait, the more change it has to grow..??!

Tess is due for a scan next month. We havent spoken about it.. and one of us (me or my mum) will have to bring it up with her, which isnt fun. She'd rather continue living her life.. as she should!

When's your next scan love? 'Scanxiety' - yep thats it hey! Down worry though we are going through the same thing and know how your feeling love.....

oxoxxo April

Hey! How are you? Hoping you are good and stable!

They decided against putting her on chemo. Since she is in such good condition (basically no side effects), they want her to enjoy her life, as opposed to getting sick with chemo. She is to have MRI's every 6 months. Im not sure what they will do if/when her tumor DOES grow. As they have ruled out more surgery. Im guessing thats when she will go on radiation and chemo. Our surgeon told us people with low grade gliomas who get chemo and/or radiation (whilst its low grade) - the treatment does not prolong their life. In other words it, the outcome was the same. Having said that... why would we bother putting her on treatment now if the outcome might be the same whether we wait or not.

Her next MRI is scheduled for June/July.

How are you going??

Hey Becky --

Sorry it took me awhile to respond.  I hope you're well.  

My tumor is stage one, I suppose.  It has never grown in any way measurable on a scan.  Which makes me lucky, as my doctors say.  But it does not mean that it has not changed.  

Since I have had worsening symptoms, and a stroke, my doctors suppose that other things are happening --  perhaps the tumor is causing irritation to surrounding brain cells, or has shifted slightly.  I get the impression that they are guessing, but I also get the impression that they have never dealt with anyone like me before.  It's very lonely.  On the other hand, I've managed to live a fairly normal life in the meantime, so perhaps I shouldn't complain.  

It sounds like you have had decent success with chemotherapy.  What was that like?  I've been on as variety of pills to treat the symptoms, but haven't seriously discussed aggressive treatment in about 10 years.  Perhaps I should revisit the idea.