Now Dx with brain mets Need Input

[dchips1]

Dx with IDC 1 year ago with met to liver & pelvis, 6 months taxol, carboplatinum, and herceptin weekly, zometa monthly, Pet scans had been clear , every thing gone, tumour markers at 13 last week.even had the brain Pet scanned in October, now MRI on Friday shows multiple lesions in the brain. Will not know sizes total number till monday. Mri shows no edema, pretty much no symptoms. The original cancer was ER/PR neg and Her2 positive. I am 39 and very active and work as a nurse and take care of special needs Kids. I know my faith in God and my family will help get me thru this new hurdle. But I need input on Tykerb do you only take it with xeloda and can you stay on herceptin. What about WBR, Gamma knife, IMRT. I need to be functional to work, and keep "my brains" but I wnat it to be gone and yet, be able to save"some" radiation exposure for another day! Cause I am going to be around for a long time!! My 6 year old needs his momma!!!!!!!!!!!!!!!!!!!!!!! I take coq10, flax, fish, fiber, vitamin, juice plus, any other suggestions!!! I go Tommorow morning to meet with Rad doc, Med onc is putting me on steroids. Thank You Darita

[Susan2]

Why are you going on steriods if there is no edema? Is it for another problem?

I'm very sorry to hear about your new diagnosis. There are several of us on the board with similar ones who are doing quite well. I'm running out the door now, but I'll post again later. Best wishes.

[dchips1]

I only am having slight headaches, I think he is trying to prevent any edema from starting? Thank You Darita

[heblaj01]

Dchips1,
As currently regulated by the EAP program set up by GlaxoSmith, if you meet their criteria you can only get Tykerb combined with Xeloda until Tykeb is approved by the FDA an event that could happen this coming March.
After this approval your onc may prescribe the Tykerb+Herceptin combo off label since this combo is not yet approved (pending results of phase 2 & 3 clinical trials). This option when available would probably be the easiest on you since your MUGA has not been much affected by Herceptin but in the meantime you may have to resort to one of the several treatments that other members of this forum have reported on.

[Lani]

of its author, whom I believe has been helpful to others inquiring on the treatment.

I don't know about Mesa, Arizona, but in the Bay area we have both Cyberknife (it was invented by a neurosurgeon at Stanford) and Gammaknife facilities --I thinks UCSF has both as well.

Others have gone to Cedars-Sinai at UCLA, Dr. Black.

Perhaps you can look up Cyberknife under Google and see if any facilities in your area utilize it. I seem to remember there was a Barrow neurological institute somewhere in Arizona with progressive neurosurgeons, and Mayo has a branch in Scottsdale.

As with most new(ish) technology, finding your doctor/facility has lots of experience with someone with your problem is reassuring.

I have posted lots of articles on brain mets--utilize the search function above and see if any are helpful.

Best wishes and lots of luck!

[Susan2]

I would ask about the steroids. According to other postings, the Decadron can have unpleasant side effects.

I was diagnosed in May 06 with approx 11 spots - too many for Gamma Knife (in the opinion of all of the drs I spoke with). I did low dose WBR with higher dose hits at the target areas. This was a specialized regimen to try to minimize side effects. Now, eight months later, I have to go in to Gamma Knife a couple of remaining spots.

I had no edema so the call was to go without steriods. Then, if I had headaches to take OTC painkillers. If those didn't work, then I would start on steriods. I never went on steriods. Now, I have mild edema - but I'm still foregoing steriods with approval from drs.

Thus far, I have had no loss of functioning - either mental or physical. (Knock on wood).

Best of everything

[Annemarie]

I was told to take the decadron and dilantin before treating the brain mets. This was to prevent seizures, stroke, headaches, and s/e edema could create. I had two craniotomies and once gamma knife. I highly recommend the later. It is easy and effective. I did WBR and I my mental function is good not perfect. I also take Temodar.

[dchips1]

Thank You all for your help, I have 6 total lesions, 5 are 1-3 mm in size. 2 on the lining surrounding the cerebellum 3 others various plaves and a 1 cm lesion sitting right next to the brain stem. I was placed on Decadron 4 mg BID on Monday, and they want to do Whole brain radiation Tommorow x 15 rounds, total dose 3700. He wants to check MRI 3-4 day after last radiation and if all is good and responding then he will wait 2 more weeks if not then he will boost targeted rads to the specific areas. He says if the one on the brain stem swells and pushes it over then we got major problems, as of right now there is no edema. If the one on the brain stem swells, or does not respond then he will send me to Barrows for their team includes radiation Gamma /Cyber knives and surgeons, if need be. I told him I need to stay functional and he said I should do quite well. He siad I will lose all my hair again, that is what I get for paying 35 dollars on Friday for my #2 haircut since chemo.
I possibly have another spot on my chest cystic complex mass? 0.5 X 1.5 cm I have a repeat Pet scan on Friday. He does not want me to change meds except for I will continue the herceptin. I sent off for the packet for Tykerb/xeloda. My medical onc says if it lights up on the Pet then off to surgeon for bx/removal, I want to see if receptor status has changed, prior to that I was er/pr neg. I hope the energy drain and fatigue is not to much and the "brain fog" is not to bad, can it be any worse than having teenagers in the house and almost 40? LOL Thank you all for your help, God is in control, Darita

[MichelleMoon]

I'm sorry you have to go through this, Darita. I had 7 small lesions (< 4mm) and had WBR in January. I held off taking decadron as long as possible during WBR since I had no symptoms prior to starting rads, but found I had to take 4 mg/day to control the headaches once radiation began. Due to the yucky side affects (bloating, insomnia, GI junk), I tried my hardest to wean quickly. Again, I had to listen to my body so the headaches stayed in check. My last WBR was 1/29 and I'm on 1 mg/day decadron this week and will hopefully be all finished in 2-3 weeks.

I did find the fatigue really kicked in once WBR was complete, so you may be quite tired.

My oncologist is talking about adding Tykerb to my treatment once approved since it can pass the blood/brain boundary.

Best of luck!

[dchips1]

Pet shows nothing, yeah!!!! Still on Decadron 4 mg Bid and # # 6 radiation of 15 down!! I feel pretty lousy, I think it is steroid, yuck. Nausea, brain fog, fatigue, but no "headache" hopefully he will decrease the steroids, next week. Even my lymphedema arm is bad so much for the steroids geetting rid of swelling. Hope all is going well with everyone else and thank you for your replies!!

Darita Smile life was good today!!!!

[sassy]

Good News Darita!!
________
Park Royal 3 Condos Prathumnak

[Bev]

Darita, I hope you continue to improve! Bev