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Mom has a treatment option!!


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After 2 days of tests, there seems to be an option for mom. She has been completely immobile since her fall last Sunday night. She probably further hurt her fractured bone in her spine which is causing her too much pain (haven't heard about the Xray yet). Dr. doubled the morphine, etc. to try to help. Also, since the fall, now her left arm is not controllable either. So, basically, her whole left side is not controllable (kind of like a limp biscuit). It looks like she had a stroke. Yesterday, my stepdad, brother and me carried her from the bed to the wheelchair, down the stairs, lifted her into my minivan, to three appointments. It is crazy how big of a change her body is in just a week.

Today, we met with the neurosurgeon partner of her radiosurgeon (who is on vacation this week) From her MRI yesterday, he still can't tell if the brain problem is from radiation necrosis or tumor growth, but he says it is even larger than the MRI from 10-7 . He is ordering a PET scan for next week and we will see him again next Friday, no later he said.

Here are the options:

If it is from radiation necrosis, he suggested hyperbaric oxygen therapy.

If it is tumor growth, he will do brachytherapy (implanting seeds in her brain) at the tumor site.

I have searched both terms on this site and I don't see any examples of either treatment being used. I see some definitions, but no one with experience with either. Is ANYONE out there who has had either of these treatment options and it helped?

It drives me NUTS that her cancer is stable in her chest, but now this? Part of that roller coaster, huh?

On a sidenote, my stepdad pulled aside my mom's favorite oncology nurse yesterday and somehow hospice came up and Peggy the nurse said there are certain criteria and explained how life expectancy must be less than 6 months, so mom is not ready for that. Dear, God, please pray that one of the options works because I am not sure how mom and stepdad can manage this. I have moved my week before Christmas vaction to this week, started yesterday. It takes at least 2 people to get her to the bathroom, etc. I am out of FMLA time, but can take a 4 month leave of absence. My brother is 19 and in college.

OK, my book must end now. Thanks to everyone at this precious site for listening to me, caring about us, educating me and keeping me a step ahead of the Dr.!!!

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Bless your heart, Lori. This must be so hard for you. I don't know a thing about those treatment options. Hopefully someone can answer or you can get an answer from Dr. Cunningham.

Wish there was something I could do. How is your brother coping? He's only 19. This type of thing is so very hard for someone that age.

Love and hugs,


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My brother will not talk to me about it. I have told him all of the realities and have had many mom moments with him, where I tell him to not tick her off even once more after the speeding ticket incident. So, he has been totally doing his own thing until this week. He skipped classes this Monday and Tuesday to help with lifting her from bed. My mom's attitude is so great about everything, she never whines (so now that she is groaning out of pain, we know it's terribly bad), and so my brother has just been happliy in agreement that everything will just be OK.

I know that I need to support him through all of this, I just want him to open up to me. If not me, maybe a professional if needed.

By the way, the Dr. increased her decadron steroids to 16 mg today-I didn't even know you could take that much. Ever known anyone to take that much?

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I'm sorry I don't know anything about either of those treatments. I don't think the information the nurse gave you was correct about hospice. You can be in hospice more than 6 months, but to qualify you can not be actively treating your illness. My Dad just signed into hospice. Sounds like your Mom has treatment options available. I prayer that they will help her. I know how hard it is to see your parent suffer and not be able to do anything to help. It really breaks your heart. God bless your family.


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Lori, words can't even express how much I feel for you having to go through this. You are a wonderful daughter and sister, stay strong and do your best for your mom. Be sure to take care of yourself too, there is only so much that you can do on your own.

Know that we will all be praying for you and your mom.

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yuck. what a crappy set of circumstances for your whole family right now. I am so glad to hear that there are options, though. I know you'll help your mom make the best possible decisions, you're taking such good care of her.

the little brother thing - I can relate to how different the experience seems to be for them. my brother, too, is what I call the "la la kid" and I am the "reality kid".

he says "la la la, everything will be great."

I say "everything is very real, very serious, just the facts ma'am."

I guess the "truth" is somewhere in between, and I know my mom needs both of us. my bro is the cheerleader, I am the offensive coordinator.

anyway, hang in there. you'll get your information - you should definately ask the experts!



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It seems Lori that you have not received answers to your questions. I could imagine how difficult this is not knowing what to expect. Hopefully, someone on here will have or knows someone what has had those treatments and could shed some light for you.

You may want to put your questions to Ask the Expert also. They are professionls and I am sure have knowlede of those treatments.

I wish I could do something to help lighten the load you are carrying.

I know the Elton John concert is next Saturday. You must be torn inside knowing this is coming up so soon after all that is happening to her right now. I am hoping that seeing her friends and going to the concert will put her in a better frame of mind. Does she know about the concert, or are you still keeping it a secret?

As far as your brother, he is only 19 and he is so scared that it is easier not to face reality and put in his mind that she will be alright. That is okay, as that may very well be. If it comes to a point where they are out of alternatives then he will need his big sister to help him through this. I know you have to be the pilar of strength in this family. This is extremely difficult for you.

At least there are alternatives that hopefully will work for you mom. Anything is possible. Keep a positive attitude. Things could change for the better at any time.

You mom has so many prayers sent out to her. I am including her in my mediatation prayers.

We are here 24/7 for you. I am glad that you are keeping us informed.

Hang in there, you will get some answers.


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Mom knows about the concert. I asked her about it yesterday, you know, how she was feeling about trying to go. She said she is going. I know that her friends will help both of us for a push and pull here and there in and out of her wheelchair, in the bathroom, etc.

Has anyone else been on 16 mg of decradon? I read of a lady last night that was awakre for 4 days on that much. My mom is sleeping alot today..

I am so afraid...

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I thought I had replied to this a while ago and see that I had not. Know that you and your dear Mom have been in my thoughts in spite of not having posted it here.

Prayers and hopes for the new treatment option AND that you get to that concert and have wondurful memories from it.


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Lori -

I just want to offer my support. I completely understand the pressures and tension of trying to offer 24/7 care for someone who is pretty immobile... we are dealing with the same situation. I have basically moved from San Francisco (and my husband) to Utah to try and help my parents through this journey. I have a baby coming in six weeks...and have no idea where I will deliver! One day at a time. Yet, I don't think you or I will EVER regret the sacrifices we are making, and yes I am scared too.

It sounds like you have options which is wonderful, I pray that one works for your mom...and as importantly you will be in my thoughts that you receive some peace and moments of clarity...and some relief from care-taking. You are doing the right thing.


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Hi Lori,

I am offering info. based on my experience. I had brain surgery last year and was given Decadron to control swelling and inflammation. I was taking 4 mg a day and and that worked. The protocal is 20mg per day. Some people are very sensitive to meds and may need less. I can't say, but I was on 4 mg a day and that amt worked for me. 20mg would have been way, way too much. It's an individual situation. I was on Decadron for almost 8 months. I too am having dizziness and instabilty walking. I had stereotactic radiation treatment. I think I have necrocis. The rad onc. apparently didn't realize I had had the tumor removed and gave me too much.

The docs looked at my MRI's and couldn't determine what it was they were looking at, another tumor or necrocis. That was at The City of Hope in Duarte, CA. PM me if you have other questions, I will try and answer them for you....

God Bless, prayers and gentle hugs,


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