HER2 Support Group Forums - View Single Post - if had or brain mets please share your knowledge

Dianedack · 03-08-2011, 08:56 AM

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!!
>

03-08-2011, 08:56 AM	#23
Dianedack Senior Member Join Date: Oct 2010 Location: Perth Australia Posts: 45	Re: if had or brain mets please share your knowledge 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!! > __________________ adenocarcinoma ductal grade 3 DX Oct 2001 2mm grade111. Level one two out of four lymph nodes positive. ER strongly positive PR strongly positive HER2 staus not known. Chemo FEC six courses Radiotherapy course. Arimidex 5 years. Recurrence April 09 Liver, Lungs & Bones May 09 Liver Biopsy ER status changed to negative PR status changed to negative. HER2 now+++May09 Docetaxol 6 cycles Herceptin and Zometa added.Disease stable for 17 months Scans Jan 2011 one of the tumours in right lung has grown significantly scan due in April 2011 to check lung tumour. Current treatment Herceptin & Zometa February 2011 unwell so hospital. DX inoperable Brain mass 11x8mmx12mm left of midline. from lungs and heart March 2011 Gamma knife treatment to brain met.March2011Tykerb/Xeloda/Zometa March 2011 Severe allergic reation to Tykerb July 2011 New met in lymph glandineck.July2011Navaline/Herceptin/Zometa August 2011 Necrosis in brain Herceptin/Zometa Oct 2011 considering Avastin for Necrosis