How many times can u regamma the same pesky spot
 

Thank you all for always being here for support at the wee hours of the morning or whenever!!!! I have spent many nights lurking and following and praying for all of you since I found this site in 2006, Crying and rejoicing with the loses and vivtories. I have always come here first then go to my appointments with a game plan. My brain and my perserverence are tired. My body pet/ct is clear, but my brain lesion that was done 2 times last year is larger, and one that had WBR rads to it is growing as well. So what is next, I get my herceptin weekly, and have put off Tykerb /xeldoda because of side effects!!!!! So now I turn to you guys for some input, cause I'm not feeling to much hope today
Darita

Darita
I am sure you will get some replies from the brain mets gals....they have the experience...just wanted to let you know you ar in my thoughts and prayers that this stubborn area can be taken care of so you can cotinue to enjoy life!

Thinking of you and praying for you, Darita.

My two cents - have you tried Tykerb/Xeloda? Was it intolerable? If you haven't tried it, I would suggest you consider it. I am on both and have been able to manage the side effects pretty well. I found my proper dose that I could tolerate and don't feel that my QOL has been affected much. I am hoping and praying that the T/X combo is reaching my brain and doing its goodness. As you can see from my stats below, so far, so good. Praying the same for you. Definitely talk to your doctor about this possibility if you haven't already. You can manage this! And you can get rid of those brain mets! I KNOW IT!

I have not been on Tykerb yet
 

Thank you for the prayers, I have not had tykerb/xeloda. I am going to see my onc tommorow, and then See the Neuro/gammaknife Thursday.


So for now it's all about the hurry up and wait! God is awesome and I know he has a plan for me . I just need to get my options so I feel like I have some control.


Darita

Yes Darita, I know that although things are dire for Ed, I am going into Dana Farber tomorrow and I am bringing hope there too, I expect to bring back even more. Having a legal pad with 6 full pages of organized options helps me to have that hope and feeling empowered. There is something, somewhere that will help my Mighty Oak, it is a race against time and we have a head start. This pad does not have articles or abstracts, just drugs and procedures.

As for you Dear, I have followed your journey and I stand right besides you. I have felt those same feelings. Let me speak outloud, okay??

First of all, like you Ed had a spot reradiated with the Gamma, it was in a difficult spot so the original amount of radiation was lesser than the other spots. The surgeon did this because it was so close to vital areas and knew he could re-Gamma if needed there. I am not sure the amount of radiation you received there and realize you have had WBR. That being said, my question to ask him is the obvious, "can we do this again here?" He will let you know. For your records I would ask and record the amount of radiation to those stubborn mets.

As for the T/X combination, this was tried by Ed and it failed for him. But it has worked magic for others, many others. This is a wonderful combination!! Please read some of the posts, especially from Brenda concerning how she manages those side effects. Please, please do not let the fear of them prevent you from your possible 'magic bullet'. Do not rob yourself of a potential answer to your brain problems. I beg you to keep this on the list of options for yourself, you well know about the BBB and the difficulties of attaching and delivering other meds past it. I beg you to keep your mind and your dreams in focus with the considerations of this combo.

For the newest of strategies and some being unconventional, I could send you a summary I have. You could also read the latest of posts from Ed which I know you have since you replied. Honey, I know what you are stuggling with concerning your brain. You feel tired, well of course you do. Not feeling too hopeful, well thus the point of my post. I feel hope Sweetheart, hope when I know what is happening to him. He is in a bad place but still I feel hope. I did not the day I found out about it, I felt despair.

Please Darita, let me tell you that Dana Farber tomorrow is not just to save my husband's life. It is to save the lives of the people I love. I will be bringing back hope for us all and you shall be the first person I will contact upon my return. Let me know if you want my list, it will take me a day or two to get it to you since I thought I saved it and need to redo it tonight. I will not send it until we return.

If I could I would look into your eyes. I would tell you that I know you are tired...that you can do this. I would smile as I told you that there is hope, that I have even more to share. I am counting on you to trust me and the words I say from my heart. Hang in there because I know that you too have a wonderful team. Stay strong Darita as I bring back home my husband's life and enough scientic hope to stretch the world. I hope in some small way I could help. You know our journey and that these words all come from my heart. PM me girlie if you cannot sleep tonight, guess you can figure out I will get very little sleep.>>Believe51

PS: While we are sitting in Dana Farber tomorrow, Please know that you will be sitting right besides us. You will fill my thoughts.

Dear Darita,

You are in my prayers. May god guide you to the right combination of drugs to destroy the brain mets and get you back to NED status.

hugs,
shobha

Darita, hope gives us strength. What if you were one of the ones who did not have the bad side effects with the Tykerb/Zeloda? What if it zapped those pesky critters and got you NED. Hope is so powerful. I know the side effects can be awful. I cried for 6 straight weeks on Taxotere & Adriamycin. My mouth hurt so bad I lived minute to minute.....BUT I had hope! I'd cry a while and then get really mad and determine to fight on and on. It was hope that kept me going even when the side effects cried out for me to stop.
Take a deep breath and be open to knowing what you might do. I'll be prayin' for ya girl! ma

Darita,

In mid October I had stereotatic radtion therapy to one nodule in my brain after surgery. It's similar to GammaKnife, but I wore a nylon mesh mask to hold my head steady on the table and there were five treatments to the area. I did not require any chemo because I have no other spots and so far the area seems clear of cancer. The nodule was a little to large for just radiation alone, and the docs recommended both surgery and radiation.

I'm praying that you get a course of treatment that clears up the mets.

Joan

Thank you
 

Thank you for your prayers and encouragement!! I meet with the Neuro/gamma doc in a few hours. So will update later after i meet with him and then go back to onc!!!



Thanks again
Darita

Hi Darita,

I just had Gamma Knife Radiation on my brain mets (4 lesions) two weeks ago.

I tried Xeloda/Tykerb but the side effects were too much for me. But don't let my problem keep you from trying it.

My onc. has me on herceptin/navelbine. The navelbine has kept the disease from my neck down in check. The brain--not so much. So I'd try the X/T option.

I pray for encouragement for you and strength.

D.W.

Follow up with Neuro Onc man
 

Sorry for not getting back sooner, My husband stole me away and we went up to Northern Arizona in the forest for two weeks. Wow!! God is awsome in all he creates!!! It was perfect, very relaxing hanging out for the fourth of July in "WINSLOW, AZ" with his very caring family. The doctors put me on hold for 6 weeks then rescan my brain. One area was thought to be scarring, and the enlarged area he said had a lot of edema, and since it was the third time being radiated, it was thought to be latent effects of the 12/08 gamma. They did not want to change to tykerb/xeloda/herceptin till the follow up scan at the end of July. I was able to not take steroids yet, I have the bottle sitting on my desk and have to take them if I strt having any Neuro symptoms. Thank You for all being there for Me and others who are on this journey
Darita

Dear Darita -
I am so glad your doctors have held off on any further treatment for now. My suspicion from your description of the brain spots was that you have some reactions ongoing from the gamma knife. The same thing has happened to several of us here.
The only way for the docs to be absolutely certain the spots are actually tumor activity is to do open surgery and remove the area for biopsy.
I allowed them to go into my cerebellum to check the suspicious area that had been gamma knifed. Everything they removed was radiation necrosis with NO tumor cells to be found.
This scenerio is my hope for you. I feel it is a very likely one. Enjoy your summer and you know enough now to sit it out a while.

How did the surgery go for the biopsy go?
 

I am afraid of having them open my head up!!! I gues I am afraid of side effects from it. I go on 7/29/09 for another MRI. Thanks for the post.

Darita

Darita,

I am so glad that you were able to enjoy God's creation. Also, I just wanted to let you know that I too was afraid of the se of Xeloda/Tykerb. I am on it for some skin issues but I have found it not to be too bad. So if you ever need it, you might want to give it a try.

Blessings,
Tonya