Anybody heard from Krisvell?
 

Wondered if anybody knew how Krisvell was doing? Seems like a while since she posted and I remember she was having a hard time.

Ellie

Re: Anybody heard from Krisvell?
 

Let's hope she checks in soon. I hope she is okay and taking good care of herself.

Re: Anybody heard from Krisvell?
 

Hi,
I haven't been logging in as often; still around and kicking. Have been dealing with radiation necrosis from the gamma knife. They said there was a 1% chance of getting it and don't you know I am the unlucky one. After trying a month on Decatron and symptoms getting worse (severe left side and right face nerve damage), my neuro oncologist tried AVASTIN and the last MRI showed the necrosis shrunk by 80%. Symptons haven't gotten any worse. Insurance initially denied the treatment as it's not standard of care. Glad I tried it.
So those of you with necrosis, consider AVASTIN!
Ellie: thanks for asking about me.
Love,
Kris.....

Re: Anybody heard from Krisvell?
 

Kris - I'm so glad you checked in and good to know the avastin is making such a difference. Pam

Re: Anybody heard from Krisvell?
 

So glad to hear from you and especially pleased to hear the news about avastin! Isn't it funny how a drug designed for one thing turns out to be beneficial for others!
Hugs
Ellie

Re: Anybody heard from Krisvell?
 

Hi Kris
I'm so pleased things have improved for you. I'm now on tykerb and xeloda I'll have a scan in a couple of weeks to see how things are going but i to feel heaps better.
Hugs to everyone
Jacqui xoxo

Re: Anybody heard from Krisvell?
 

Hi Kris,
I am so sorry you have had such a hard time. You must be very special to fall in the 1% range! LOL

No, I know you are a very special and precious person. I am so happy that the Avastin is working so well. I am sure the side effects are much less than those of those steriods.

Now that you are bouncing back, I am hoping and praying that all bumps will be gone from your road to a healthy future!

Lot of love,
Sandra

Re: Anybody heard from Krisvell?
 

Hi Kris,

Praise God you are doing well! We have missed your Pep talks and look forward to you hanging out with us more often!

Gods blessings to you and please know you are in my prayers

Re: Anybody heard from Krisvell?
 

Dear Kris, I am happy you gave us some news but I am sorry you have to deal with necrosis now. I hope the symptoms will start disappearing. You have a good neuro onc. I'll keep thinking of you. Hugs. Michka

Re: Anybody heard from Krisvell?
 

Great news about the Avastin, Kris and glad you're feeling better too, Kiwigirl.
Trish

Re: Anybody heard from Krisvell?
 

Kris,
As always, dear friend, I am thinking of you and sending you best wishes. We are all so busy, goes without saying, but I think of you often.
Karen

Re: Anybody heard from Krisvell?
 

Krisvell I am suffering gamma knife necrosis affecting my right side I was interested in Avastin but hear there is risks of brain bleed so I am a bit scared to try it how are you doing on it? The disablement caused by the necrosis is getting me down.

Love
Diane

Re: Anybody heard from Krisvell?
 

Interesting...my onc did not mention this benefit to being back on Avastin but I'll know in a few weeks if my alleged necrosis is avanished. Hang in there!

Re: Anybody heard from Krisvell?
 

Diane,
I’ll share with you how I came to getting Avastin. It might not be the right treatment for everyone. YES, the brain blood bleed risk was mentioned by my oncologist and she was initially against it and recommended Herceptin/tykerb. I initially was going to try the Hyperbolic Oxygen Chamber(HBOT) but an Mri detected a suspicious nodule and HBOT wouldn't be the best treatment for that. With my symptoms getting worse (6th nerve palsy, left side nerve pain and right face nerve damage), I really didn't have too many options.
I looked into a Clinical Trial at Dana Farber, Boston MA for brain mets using Carboplatin, Avastin but didn’t qualify because the nodule was not measurable (has to be at least 1 cm).
http://clinicaltrials.gov/ct2/show/NCT01004172?term=Carboplatin+and+Bevacizumab+%28Av astin%29+for+Progressive+Breast+Cancer+Brain+Metas tases&rank=1
I was at the point where there was a suspicious nodule, increasing necrosis and worsening sytmptoms. I decided to try Avastin based on my Neuro Oncologit's experience with it and the fact there was a clinical trial using it as well.
Hope this helps.
Kris….

Re: Anybody heard from Krisvell?
 

Hi again -- Sending along a heartfelt THANK YOU to ....Ellie, Elaine,Pam, Jacqui, Sandra, Pray, Michka, Trisha, Karen, Diane, SoCalGirl .....

I appreciate your words of support. Everyone is dealing with something and you took the time to boost my spirits. It's been a tough journey this summer and your posts were wonderful.

Hugs and best wishes,
Kris....

Re: Anybody heard from Krisvell?
 

Kris,

Hang in there sweetie!! Sounds like the Avastin could be the magic bullet for you...

all the best
caya

Re: Anybody heard from Krisvell?
 

For those of you who know Krisvell ...... she became an angel on November 25th.... you may read her obituary in Meriden Record Journal.
She helped me on my journey with breast cancer.... I will miss her.

Re: Anybody heard from Krisvell?
 

Thank you Pat for posting this very sad message. Chris called me before she began the vaccine trial and I will always feel a very special bond to her. I loved her spirit and her determination. She will be greatly missed.
Sandra