Re: I don't know what to say other than HELP !!!
 

Hi Jacqui - I am so sorry to read about your latest battle with brain mets. And I am also sorry that we never got to meet while I was also up in Seattle for the vaccine trial.

It seems that we have a lot in common - I too was on the vaccine trial and developed brain mets while on the trial. I have had two rounds of Gamma Knife since starting the trial. I am not entirely convinced that the vaccine is not working on the brain but I do think it takes some time to really start ramping up our immune systems. I'm still hoping for a miracle.

I hope you are able to find someplace to treat your brain mets with targeted radiation, such as Gamma Knife. It has been 100% effective for my brain mets. I have now had a total of 21 brain mets and all of them have been successfully treated with Gamma Knife. I am praying I don't get any additional brain mets but if I do, I am confident that we can blast them all with Gamma Knife.

If you would like to chat, let me know if you are on Skype. Holding you to the light and praying for a smoother ride ahead for you, my dear.

With love,

Courtney

Re: I don't know what to say other than HELP !!!
 

Hi, Jaqui,
I am so sorry to hear about your brain mets, your brother's and dad's health problems as well. You have too much on your plate. Hang in there.
I was also diagnosed last month with 3 brain mets. I wanted to have the tumors removed, and I went for surgery, but it was cancelled at last minute because of the tumors in my lungs, and I was so disappointed, I still am. I ended up having Xknife to zap the 3 tumors but one of them was 3 cm, and the best way to do it is to have removed first by surgery, then zap it with a SRS like Gamma Knife, Cyberknife, Xknife, Novalis, etc. I agree with Jackie that with a tumor that size, your neurosurgeon might want to remove it first before any radiation. I hope you find the best treatment to get rid of the these mets, so that you can go on with your life.
I will be praying for you and your family.
A big hug,
KarlaV.

Re: I don't know what to say other than HELP !!!
 

Hi all had my reports and the rest of my body is clear!!!!!!!

Unfortunately the one large tumor i have is poorly defined and it can't be removed. They want to start WBR on Thursday for 15 sessions and then hit the large one at the back for 5 sessions.

No gamma,cyber,xnife or novalis here. I'm getting a second opion on Thursday moring. Can I start wbr then go overseas to get gamma or cyber.

We have a machine just put in here for this but not set up for gamma yet. My bad luck again.

Or may be i can reduce the tumors through meds and hope the gamma is set up in time.

Any way home now for a day told my dad it was really hard but i softened the blow so he does not know it all. My brothers radiation is going well so thats good. I don't know if i mentioned but like the other Jackie my mum had non-hodkins lymphoma for 12 years and she passed in 2009. To much cancer in our gene pool!!!

Thank you for your messages and help. It really really does make a difference. And all the advice is fantastic. I'm really going to try and get this treatment right.

Joan, Courtny,Kris and Kavey and Trish thank you so much you guys have been a great help to ground me and for the first time in a week my stomach is not in knots.

Hugs an kisses to all
xxxxx

Re: I don't know what to say other than HELP !!!
 

Just want you to know you are in my thoughts and prayers too. New Zealand is very special to my family and it has been my dream to go there. In the '70's I had a chance to go there to teach but it didn't work out, then my oldest son was able to spend two years there. It was our plan to go with him and his wife this summer but because the BC came back we went to Hawaii instead. You are such a lovely family and I pray things will get much better for all. Please let us know. Hugs, TriciaK

Re: I don't know what to say other than HELP !!!
 

Sending healing thoughts your way and praying for you and your beautiful family.

Re: I don't know what to say other than HELP !!!
 

Hi all home for the week and feeling so much better. I'm now taking less dexamethasone.

Anyway big week last week i sacked my radiologist onc and have a new one he's great. Straight away I had a full brain MRI from this they found 10 mets which sounds bad but the one large one I had is made of three, may Brain CT was very poor quality. All mets are in a similar area with only one that is front left Brain. So this means they are all small. Thats good right?

Anyway after getting over this shock I have been booked in for VMAT (new machine and new to NZ) radiation not WBR. this takes some planning and it looks like I will start on 23 FEB .

On Wed we meet with my onc and they are still talking T-DM1 + pertzumab as it cross the blood brain barrier I think.

My CT of the rest of me was CLEAR.......Yeah!!!!


Time to rest and research.

Luv Jacqui

Re: I don't know what to say other than HELP !!!
 

Tricia i like Hawaii to. Its so hot and humid here at the moment. I nice time to visit Nz is Feb-March for warm not to hot weather.

Have to jump this next hurdle then Hawai here i come

Re: I don't know what to say other than HELP !!!
 

Sounds like you are on a new path that will bring you healing. Get lots of rest to be ready for your radiation. Glad to hear you sound positive and upbeat. The 23rd is the start of becoming NED again! I will be sending up prayers for you and your family.

Re: I don't know what to say other than HELP !!!
 

That is great news Kiwigirl. It is so hard to assert yourself in those situations but you did it and I think the path sounds really promising. So glad you didn't do WBR. I know it is considered necessary in some circumstances but your's certainly don't qualify now you have a more accurate picture of what is going on. Well done.
Trish

Re: I don't know what to say other than HELP !!!
 

The following review on VMAT looks very good:

http://www.ncbi.nlm.nih.gov/pubmed/20879575

Re: I don't know what to say other than HELP !!!
 

Re: I don't know what to say other than HELP !!!
 

Jacqui,

Great scan results!

Joan