I need to take action for my sister!!

A lot of you are familiar with my sister Marilyn`s dx on 7/28/09 and two subsequent surgeries. At this point she is sitting on the couch dying, while we wait for the appt with her chemo guy on the 17th to begin Avastin. Her NO told us she might only live for 3 to 4 weeks without treatment and by the time that appt arrives it will be three weeks!!

We need to know exactly how to reach out to Duke or anywhere for a second opinion or a quicker treatment plan. We are only her sisters but she is dying right in front of us and I find it impossible to believe that somebody can`t do something. We have read so much on this blog about different drug combinations and her NO has offered nothing.

Can her GBM be worse than anybody else`s on this blog?? I think not. 

Thanks everyone...I`m in a bit of a panic...What I saw in my sister`s eyes today is not good.

Marilyn`s sisters

OMG. This is so awful and I'm so angry for you. First question: is she on steroids? If not, think about giving her some--maybe you have some leftover in a script bottle somewhere. Second: have you called Hospice? The word none of us want to hear, I know, but they don't have to be just end stage care. They can help to get you from one place to another. Third: where do you live? I'd email every major brain tumor center in the country and see who replies the fastest. It being Sunday, it most likely won't be until tomorrow. I'm no doc and I certainly hate to give that kind of advice, but give the dexamethasone a thought--hospice nurses may tell you the same--or call her hsopital and talk with the neurologist on call--even a resident or a fellow--anyone who can get you through this. They may want you to get her in there--not such a bad idea.

Forget tha first three things: call the hospital and then an ambulance if you need one. Don't let this wait until Monday.

I agree with Mary. Get her to safety, ASAP. But give her a mega dose of steroids right away. 8, 10, or 12 mg. This is what they would do in the ER but you can avert damage between now and then.

Heart filled with love and fear for you three sisters.

Sarah

She is taking 4mgs of Dex every 6 hours and I think it`s helping the headache. We have to constantly remind her or she only takes one or two. Eating practically nothing and we are forcing her to drink .

I`m going to start emailing anybody and everybody.

Thanks and I`ll keep you posted.

Here is the contact info for Duke.  Dr. Friedman ususally contacts you within 24 hours. 

http://www.virtualtrials.com/address2.cfm?center=The%20Brain

You can also e-mail Henry Friedman. I hear he checks his e-mails pretty regularly. www.cancer.duke.edu and click on Preston Robert Tisch Brain Tumor Center for his e-mail address. I am not sure if we are allowed to share e-mail addresses on here so I am not includinging it.

I am thinking of you all.  You are wonderful sisters!  Keep the faith. 

I hesitate to send this but after just losing my dear sweetheart husband last week, please just make your sister comfortable and be with her.  Looking back, the weeks untill we finally called Hospice were hectic, tiresome and filled w/ denial.  Although, Hospice was only by our side for 10 days, it helped us transfer the work load of care so we could sit by my husbands side, the kids could come home and tell him about their day and family & friends could surround him w/ their love and fond memories.  I remember crying in the kitchen and wanting to take everthing back and do whatever was neccessary to fix my dear one but as he even said: "it is, what it is" and I went forward knowing that the brain cancer was not an act of God or fault of anyone.  Our NO was compassionate with our wishes and confidently accepted with us that more treatment did not = more quality time. Make the best of what you have, trust your instincts even if that means 2nd, 3rd opinions but also know there is a time to enjoy in such a hard way, a gift of life that comes to all of us. I also saw the look in my beloved husband's eyes and I knew. I am in no way saying to give up but just put your efforts  where they will give you the biggest return.

Well, we took action and our phone calls and emails were answered very quickly. My sister (Wendy)contacted the Brain Tumor Center in Iowa City,Iowa. They concurred with Marilyns NO and she will hopefully start with the Avastin on the 17th. They also did not think that a second opinion would change anything.

I reached out to Dr Henry Friedman at Duke as suggested by new friends on this site. He actually called me this a.m.!!! He agreed with the folks in Iowa city and her NO that at this time her best bet is the Avastin. He also was pretty reassuring that she will indeed make it until the 17th.

So, here we go.....keep her healthy to the best of our ability and as always, hope for the best.

Thanks everyone :)

On Nov 09, 2009 8:56 PM passionfish wrote:

Well, we took action and our phone calls and emails were answered very quickly. My sister (Wendy)contacted the Brain Tumor Center in Iowa City,Iowa. They concurred with Marilyns NO and she will hopefully start with the Avastin on the 17th. They also did not think that a second opinion would change anything.

I reached out to Dr Henry Friedman at Duke as suggested by new friends on this site. He actually called me this a.m.!!! He agreed with the folks in Iowa city and her NO that at this time her best bet is the Avastin. He also was pretty reassuring that she will indeed make it until the 17th.

So, here we go.....keep her healthy to the best of our ability and as always, hope for the best.

Thanks everyone :)

It is truly heartwarming to see how caring and eager to help the professionals in the brain tumor world are, isn't it?  I will keep your sister in my prayers and you, too, as I know how exhausting this is for you!