setback for my sister

My sister met with oncologist today. He went over the preliminary reports from her MRI. He said that she most likely had a mild stroke and that there are new mets at a completely different location of her brain. The other 20 or so mets are still there, but remain stable. She is, obviously, devastated about the news. I had planned to be with her to receive the results, but my daughter was sick and I could not go. She said that the onc. mentioned that he wasn’t sure if she could get radiation because of the location of the mets, but Carole said she can’t recall what area of the brain he was referring to and nor could her husband or my parents..I think they were all trying to digest the news. I have never heard of not being able to receive WBR, so I’m wondering if he was referring to Stereotactic surgery. Has anyone heard of not being able to have WBR because of met locations? She has already had WBR, but because she only received 5 treatments we were told that she could do more if it was necessary.
I will go with her on Monday to meet with onc. and radiologist to go over the more detailed report and discuss possible options…could there be more than one option? I hope so.
She told her doctor that she didn’t want Navelbine anymore. So many of you are on it or have been on it with such tolerable side effects, but I suppose everyone is different. Carole can’t deal with the severe abdominal pain. When I had spoken with her early this morning (prior to receiving the brain met news), she had decided to stop chemo for awhile. She said that she wants to be able to spend quality time with her husband and kids. She is tired of being sick and wants to be able to enjoy the outdoors..she hasn’t been able to do this on her chemo regiment. I can’t blame her for this decision. The pan that she was in was truly unbearable. Anyway, doctor said that maybe when all is sorted out with brain met, she can start Xeloda/Herceptin…which she’s willing to give a try. Did I read recently about having to avoid folic acid on this chemo? Also, anyone currently on this combo, how are the side effects? How long have you/or were you on it? Finger and toes…peeling of skin?
What is the name of the chemo that is sometimes administered through a port directly onto the brain? Under what circumstances is this used? Any info would be so greatly appreciated.
Sorry for rambling, but I’m scared..these brain mets seem out of control.

[StephN]

Dear Celina -
I am SO sorry that someone did not get some more clear answers on what was (mis)understood about no more radiation in your dear sister's case.

Is it possible to put in a call to the rad onc's nurse and try over the phone to get the doc to talk to you and explain? This is something that will drive you all batty if you have to wait again till next MONDAY!

Without the crucial information - it is almost useless to speculate as the mind does not know where to settle or what path to take.

I am glad you sister will try for the Xeloda.
I had to use Neurontin for my pains, but do not know if it was worse from the Taxol OR Navelbine since I had them together weekly for some 6-7 months.

Celina,

I am very sorry to hear of your sister's setback. I agree with Steph, call the doctor and ask to have the report explained to you over the phone. I don't think that it would be too much to ask.

I can relate to your sister's reluctance to remain on Navelbine. Many people handle this chemo with very little problems. That was not the case for me. I only had 9 treatments of it and the side effects were rough on me too.

My only suggestion with the Xeloda would be to have your sister begin taking the vitamin B6 from the first day she begins treatment. It really helped with the Hand Foot syndrome. I got a bit chilled with the Xeloda, so often had little space heater sitting near me, to keep me warmer than the rest of my family.

I will keep you and your sister in my prayers as you determine the decisions to some very tough questions. I am SURE that there must be more that they can do for your sister's brain mets. I do not have any info. to pass on concerning brain mets, but I am sure that many of our brain met survivors will help you out there.

God Bless,

Cindi.

Hi Celina. Yes, after my Gamma Knife last Friday, my onc told me to start Xeloda yesterday. 3 pills in the morning and 3 at night. This is for my lung mets, but she said there is some documention that Xeloda crosses the brain barrier. I had been on Xeloda for lung mets before. I did takevitamin b-6 and Celebrex. I stopped the celebrex on my own because of the controversy with it right now. I did get mild hand/foot syndrome but alsways had my hand lubricated with Udder Creme. I did have mild direahea at first and gastrointestanol problems. But I was also taking it with Gemzar. My biggest side effect with taking the Gemzar/Xeloda together was was low WBC and not being able to Neupogen while on Xeloda. So, onc stopped Xeloda and put me just on Neupogen, Gemzar and Herceptin. However, my lung mets progressed and here I am again on Xeloda/Herceptin and a brain met. I hope this helps. God bless you. As far as the folic acid. I am the one that posted that question. I called the Roche company this morning to see whateffect it has. They are going to mail me the literature. However, they said that literature. from Roche states that folic acid may interfere with the results of Xeloda working in your body. My onc. told me I could take it as a supplement with my Centrum multiple vitamin. But Roche company said to check again with her on Thrusday when I go for my appointment. I feel there is a lot of controversy on this. Let me know what your sister's onc says about this. My e-mail address is hetrahan@aol.com.

Dear Celina, I am so very sorry for you, having to try and make sense of all this, from a distance, (but not distant enough!!). I know, speaking for myself, and seeing my daughter's, father's and husband's reactions, that the information and the decision-base for me is not what it is for the family. I will include you and your family in my prayers and hope to hear from you and let you know you are not alone.

A line from a book (Brick Lane by Monica Ali, pg. 15) struck home today: " "Fighting against one's fate can weaken the blood. Sometimes, or perhaps most times, it can be fatal."

Each one of us probably knows where that line is; just not when we really think we need to know!

Love and courage, Eccles