if had or brain mets please share your knowledge

[GracePang]

Hi Pam,
Sorry for being late to chim in and sorry to hear the suck news about your brain mets. I understand your anxiety, since I experienced the same when mine was found last July. I had 12 sessions of WBR finished by early Aug, since I had over a dozen of small brain tumors; SRS was not an option for me. A follow up MRI after about 40 days showed that all tumors shinked; but by December for the 2nd round follow up, they found 3 of the old tumors became active again. They gave me gamma knife in Jan and the following up MRI was scheduled in April. I don't have much symptoms and I didn't take steroid during either WBR or Gamma knife, but I took Boswallie on my own. I feel good now, even though with some fatigues from time to time. I am on Xeloda and Tykerb now. If you have any specific questions about my experence with the treatments, please pm me. Love, Grace

[Kavy]

Hi, Pam,
I'm so sorry to hear your brain met news, but I'm glad you have a treatment plan and that you've already started WBR. I pray that WBR will zap all the mets for good, and if you have any problems with the bigger mets, you can always zap them again with SRS, like Gamma Knife, Cyberknife, Xknife, Novalis, VMAT (not familiar), or surgery.
As you know, I almost had surgery to remove 2 brain mets, but it was cancelled when I was already at the hospital because of my lung mets. I ended up having Xknife for the 3 mets, similar to Gamma knife. I have/had a 2.8 cm left cerebelum met, and my main symptom was/is balance problem, I do not feel dizzy, and I almost never have headache. I'm still on decadron, now on 2 mg a day, 1/2 a pill, but I can't wait to stop it, then I will take Boswellia Serrata. I also take zantac before decadron to avoid stomach problems. Since the procedure, I'm taking keppra, anti-seizure medication. Even though I never had seizure, I will have to take it for 3 months. I will have a MRI in April to see how things are going, but I haven't seen too much improvement so far, and my radiation oncologist said that if my balance problem does not get better, I might have to have surgery anyway.
I was on Tykerb/Herceptin for a year when I was diagnosed with brain mets. My doctor kept me on the same regime because it has kept my lung mets stable for a year now. I will see him in April, after a CT scan of the chest, but I do not think he will change my treatment.
Pam, I'm sorry you are going through this. I know that brain mets diagnosis is very scary, but once you overcome the shocking news and do your treatments, brain mets will be like lung mets, liver mets, etc. Hang in there.
I hope and pray your oncologist will make the right decision treatment plan for you later on today. And if you cannot have Halaven while doing WBR, why not keep taking Herceptin or herceptin/Tykerb until you are done?
A big hug, and healing prayers your way.
KarlaV.

[Dianedack]

Just an update on my brain met inoperable tumour. I decided to hold off on WBR for the moment as they can only see one tumour at the base of the spinal column bad place for it to be though.>
> There has been a new development I am flying to Sydney from Perth Australia for Gamma Knife treatment on my brain on Thursday at a cost of $25000!!! plus flights and living expenses at Macquarie University Hospital.. I have seen the Perth oncologgy radiation doctor today and she agress with my decision. As its my best option.They don't have the equipment needed here in Perth. The Sydney thing is a second opinion. Procedure needs to be done asap so seeing doctor there on Friday. Medicare and my health insurance don't cover this. If Medicare don't cover it neither does the health fund. Crazy system here. Small savings gone in one hit. May have to be prepared to repeat if necessary down the track but got to give it my best shot. My four lovely granddaughters need me!
>
> I am terrified about what is happening to me and so is Pete my husband. I will be in Sydney for about a week. Never been there before. I feel like I have been on a three week roller coaster ride cant sleep because of steroids and I will continuing on them for a while yet after the treatment so have to find a solution to the insomnia. I need to get this treatment on the brain done soonest as I cant start the chemo of Xeloda and the targeted therapy Tykerb for two weeks after radiotherapy and I feel I am getting worse in the other parts of the body rapidly. Could be I'm just exhausted. This is our small savings and doctor says I will most likely have to do this again down the track!!! Please Medicare approve it. Gamma knife it is apparently the best treatment available in Australia to halt my tumour for a while but no guarantees!!
>
> The targeted therapy that I will need after the gamma knife is $4000 per month plus the chemo costs of course but the combo is currently funded I don't know what will happen if it doesn't work I may have to purchase a different combo of drugs - all money and more money. Must not worry about that now though. I am lucky I can just raise the money for this treatment.
>
> Wish me luck. We will be back Thursday week..
>
> Take care of yourselves limit that mobile phone use!!
>

[kiwigirl]

Hi Diane this my be a option for me after my treatment here. Can you let me know how it goes. Life is better than money anyway your grandchildren will be be happy with your choice.

I wish we had that option here (NZ). Sydney is fun treat it like a holiday and enjoy. I really do wish you all the best. Jacqui

[Dianedack]

Hi Kiwi girl.

Yes it is surprising how behind we are compared to USA & Europe. No cyberknife any only two gamma knifes. We have only had gamma in Australia since August crazy isnt it. I will for sure let you know how it all goes I will PM if you like when I get back from treatment. You are right I need as much time with my family as I can get they are so precious to me. I hope for success. Wish me luck!

[kiwigirl]

Goodluck Diane my thoughts are with you..... YOU CAN DO IT!

A pm would be great only when your ready.

[Trish]

I don't know specifically about TDM-1 crossing BBB but my rad onc said that mets breech the BBB and it is thought that this may enable the chemo and targeted therapies to get to the mets.Good luck to you all with your brain mets treatments and thanks for sharing your stories.
Trish