our dear friend Hope

[jojo]

With Hope's permission, I am putting up a post for her. Because of her poor eyesight, she cannot stay at the computer any longer than 15-30 minutes, she would get exhausted.

As you may recall, Hope had had gamma knife done on her brain met about 2 years; unfortunately it later grew back in the same place. Severe side effects came on afterwards: headache, lightheaded, limited vision, to name a few. She was put on Decadron (steroids) to reduce brain edema (swelling), but even this drug seems not to be working at all, as Hope continues to have the side effects.

She went on to have a 2nd opinion. Both of her doctors suspect that the lesion is necrosis, but you know that it would require a biospy to get confirmation on that. The location of Hope's met is very deep, so the biopsy would be very risky for her. So, they will never know for sure.

Her own doctor suggests that she increase on the steroids only because the side effects are worsening and the edema is not shifting in any way. The 2nd opinion says to taper off on the steroids, just to see if the side effects would lessen / disappear. So, obviously she has condritactory (sp?) recommendations.

The doctor mentioned about a blind study of a drug that works similar to Decadron; however, since this is just a blind study, he couldn't guarantee that she get the drug or even a sugar pill. So, she declined, after all.

This is one terrible kind of 'waiting game' for her. :-( Would you guys kindly give our dear friend Hope some prayers / words of encouragement??

Much thanks! ~ JO.

[Barbara H.]

Please tell Hope that my thoughts are with her. Perhaps the necrosis wil somewhat resolve itself. I had a terrible time with decadron, and finally opted to be off balance for a while as the dose was tapered. I really wish I had known about this website at that time. I can't imagine that this condition hasn't happened before with all the gamma knife procedures. There should be a way to send out an inquiry about how to resolve this issue. In the meantime I wish Hope all the best.
Barbara H.

[*_Julie_*]

Will she be able to participate in the Lapatinib trial as Celina's sister. That seems to be working well for some people.

Julie

[Rozebud]

Thanks for the update Jojo. I will pray for her.

[*_Sandy H._*]

This would be a good one to ask about. My doctor said at this time it is only being done with chemo. He wanted to add it to my Herceptin without the chemo but it has not been released for the doctors to use outside of trials. Never hurts to ask. hugs, Sandy

[Lisa]

JO,
Thanks so much for updating us on Hope. Please let her know that her friends here miss her and send her only healing thoughts.

Love and light,

Lisa

[StephN]

Jojo -
You are a friend indeed to stay with Hope while she suffers with this problematic situation. And we so appreciate hearing what is happening - even if it is not the best news. We can go from here on to better news!

Hope -
Are you doing some things to try to fight the inflammation naturally? I also doubled my daily intake of Coenzyme Q10, as it is a very good blood oxygen carrier.

There are some dietary items that actually INCREASE inflammation because they contain Arachadonic Acid - such as POULTRY (a surprise to me!), egg yolks, FARMED salmon, organ meats.
Dairy foods and most wild seafood have very little AA. Items with trans-fatty acids also contribute to imflammation problems - these include margerines, vegetable shortenings, commercial baked goods.
Olive oil is mildly anti-inflammatory, and the best substitute for the above for eating and cooking. Oil from corn, safflower, sunflower, soy and cottonseed contain omega-6 fatty acids which convert in our bodies to pro-inflammatory messengers.

I tried to follow these guidelines while working on my brain inflammation. Mine was not actual edema, but dubbed "diffuse inflammation." Maybe this is easier to get control of than what you have. Mine was also not so deep.

As usual, you are in my thoughts and prayers for a quick and full recovery.{{{{hugs}}}}

[Lolly]

Hope, I'll be keeping you in my thoughts and prayers, and am sending you hugs and smiles :)

<3,
Lolly

[*_Cindi_*]

Hope,

I will keep you in my prayers. I don't have any advice to offer to you. Tx decisions are sometimes very tough to make. I am sorry that you have to go down this path. This path we have all taken is long and winding, that's for sure.

Peace,
Cindi.

[Hope]

A big Thank You to you Jojo and to all of you who replied or read my update. I thank you for your advic, prayers and good thoughts. I am schedled for a MRS(spectropu) August 17th to see if it gives the doctors more information whether this is a cancerous tumor or necros (which is my understanding, it takes a long time to resolve. ) If any of you have been in a fimiliar situtation where they over-radiatated your brain, I would be instested to know how long it took to get resolved and what doctors did.
My adice to all of you with brain mets is to be sure if you have a re-occurence of brain mets, especially in the same area to bet a biopsy done if it all possible before they radiate area again or ask for an MRS, different from MRI. I also have been talking to Christine D. who also went throught a similiar experience and she has been wonderful to say the least. I will keep all of you in my prayers and with this disease, se can all use them. God bless you. Feel free to e-mail me at hetrahan@aol.com if you so wish.