Brain MRI results after Xknife
 

Hi, everyone,
Not so good news. The tumors in my brain grew, specially the 2.8cm in the cerebellum, now it is 3.5cm, and 2 small new ones.
The radiation oncologist wants me to do WBR, but I'm terrified, because of all I read, and also because I'm already very tired. I want to do Xknife again, but he said he would be doing me no good. He thinks if I do Xknife, in 2 months there will be more mets in my brain.
I'm worried about the cerebellum tumor though, because I feel off balance again and my writing is getting worse. The radiation oncologist said the growth can be due to radiation, but if it is real growth, the WBR would wipe out any residual tumor.
I wonder if I should do Xknife again for the 2 small tumors, and wait 2 months to see if the next MRI shows growth in the cerebellum, or 2 months is too long to wait, and I should have WBR now. I do not know what to do, and I need to decide by this week. I would like some advice from you all.
I also want to let you know that I entered the Halaven club. I just started Halaven/Herceptin for my lung mets because of progression, before I was on herceptin/Tykerb for a year. First week I had Herceptin/Halaven, second week just Halaven, this week is my week off. Side effects so far: I feel very tired,but I was already feeling very tired before halaven, no nausea (no nausea medication, when I feel mild nausea, I eat something, and I'm fine), it seems neuropathy is getting worse, thinning of the hair. One thing I noticed is that I'm coughing more since I started the new drug.
Have you all a great week.
Hugs,
KarlaV.

Re: Brain MRI results after Xknife
 

Oh Karla, This is not the news we wanted to hear. I sure can't advise you on treatment except to say it seems you radiologist is quite firm on the fact that that wbr is the best treatment now - and zap it now, not wait. WBR will attach all the tumors at once. Having just done 20 treatments of wbr I know it's not a walk in the park but if it does the job ...

I finished wbr about 1 month ago now and will have to wait another month I guess for an mri so have no results yet. My largest tumor 2,.6 was also in cerebellum. Also 2 more in cerebellum a little smaller ... and 5 or so small ones other places. I got really tired and weak - the decadron really weakened my muscles. Had I known h0w bad that could get I would have done some little strength exercise program each day to prevent it. Now I feel much stronger -- not yet back to "normal" but much better. But remember I had the 2 leg surgeries and weakness there going into the rads. If you do the wbr they'll probably hold off on the halavan during that time - at least that's what they did for me.
I don't know if hearing about my experience helps but gives you more info,.

You and your radiologist will make the right decision on how to zap those darn mets. Holding you in prayer for good treatment and good results. Pam

Re: Brain MRI results after Xknife
 

Karla, I am so sorry to read that you have to fight these brain mets again.
I am not a brain met specialist but I am sure others will share their experience or knowledge. You started Halaven which is a good move now you have to feel comfortable with the rest of the plan to get rid of these brain mets.
Sending a lot of strength and hugs and calling "brain" girls to give you an advice.
Michka
PS: Pam, I often think of you. I hope you will have a very good MRI next month!

Re: Brain MRI results after Xknife
 

Sorry Karla no expertise here but I am hoping very hard the Halaven will do its job.
Trish

Re: Brain MRI results after Xknife
 

Karla
Hoping the brain mets can be taken care of swiftly and efficiently so you can continue the Halaven....it seems to be a powerful and successful option....sending healing thoughts at this time, look at whatnPam has endured and use her as a role model.....prayers for you

Re: Brain MRI results after Xknife
 

Dearest Karla,
I sincerely hope that the radiologist gets your brain mets under control/killed and you can get back on Halaven real soon to take care of the other stuff.
Im sending along my power prayers and positive thoughts your way to knock down the brain mets for good.
Love & Hugs,
Kris....

Re: Brain MRI results after Xknife
 

I know nothing about brain mets, but I just wanted to offer my emotional support and a cyber hug to you.
Pam is a good role model for your current problem. Think about what she wrote. Take care.

Re: Brain MRI results after Xknife
 

Karla,

I think your radiation oncologist's concern is that there will be more new ones appearing if you don't do WBR right now. Gamma Knife (and X-knife, I'm certain) injures our brain and makes us very tired as well.

I would strongly suggest you to get a 2nd opinion from other radiation oncologists in reputable institutions.

Will continue to keep you in my prayers.

Re: Brain MRI results after Xknife
 

I don't know what to recommend - not sure what I would do in your shoes. I am having my mri this weekend, so my own scanxiety already acting up. See who else chimes in - there are so many with brain met experience here. Sending you tons of positive thoughts.

Re: Brain MRI results after Xknife
 

Karla,
I just wanted you to know I am saying a prayer for you right now that you will get clear information and understanding for what you are to do next! Have faith and know we are cheering you on!
Elizabeth

Re: Brain MRI results after Xknife
 

Hi Karla,

close your eyes and think about those mets as hockey pucks and you are holding the stick now shoot them out of your brain!

Pam, is a great role model and it is nice to have someone who knows exactly what you are dealing with.

Re: Brain MRI results after Xknife
 

Karla,

I'm sorry to hear about the possible progression in the brain after the X-knife. How long has it been since the procedure?

After my craniotomy to remove my brain tumor I had five shots of targeted radiation to the brain (IMRT). At first my MRIs looked good, but after a while they started to show enhancement every three months, and the radiologist could not rule out regrowth. The neuro-oncologist finally did a PET scan and the area was not active, leading him to think that the enhancement was necrosis of the tumor bed (he said, 90% sure of that).

Is it possible for you to get a second opinion?

I'm praying that all will be well, and that the area now showing in the main tumor site is only the tumor dying, or necrosis.

Joan

Re: Brain MRI results after Xknife
 

Thank you all for your support, advices, prayers, thoughts and words of encouragement. You are great.
God bless you all.

Pam, I 'm happy to know you are feeling much stronger and much better. I hope and pray that your MRI results will show that the mets are all gone(NED). I think the radiation oncologist will keep me on Halaven if I do WBR.

SoCalGal, sending you prayers for NED MRI results this week.

Joan, The Xknife procedure was in Feb.2, and the MRI was in April 18.