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What to expect?

Posts: 4
Joined: Mar 2005

I have a very good friend in her ealy 20s. Less than two months after completing chemo for a brain tumor, the doctors found another tumor, of the same variety, in a different part of her brain. The new tumor is inoperable and, despite the past few months of chemo, still growing.

I don't know where to find realistic information about what I should expect in terms of survival rate. I'm scared to ask my friend outright.

Can anyone give me a realistic answer? Even if the answer is depressing, I need to know.

Thank you.

Posts: 1
Joined: Mar 2005

How is your friend doing? My best friend was diagnosed with Terminal Brain Cancer September 2004. She is still with us even though there is some live activity in one of the tumors, she has 13 total. Have you talked to your friend yet about her prognosis and time frame? My friend is more than willing to discuss it and is very open. It is very difficult but I am proud at how brave she is.

Posts: 4
Joined: Mar 2005

It's hard to ask her questions, because the tumor is affecting her speech. Two months ago, she couldn't think of the type of tumor that she has. The symptoms have been growing more pronounced since then, even though she's been on bi-weekly chemo treatments. In addition to having difficulty finding the words that she wants, she's also begun having difficulty string sentences together.

She seems fairly cheerful, but that's also her personality. I know that in additon to the speech difficulties, she's also partially paralyzed in one side of her body.

This has all been fairly quick. The new tumors showed up less than two months after she finished treatment for the first tumor, and are resisting chemo.

Posts: 1560
Joined: May 2006

I'm very sorry to hear about your friend. I don't think you specified what type of tumor it is..but I recently had a very bad experience with a glioblastoma grade 4. My mother was diagnosed in late january and died on Feb 14.
I thought we would have more time...but it happened so quickly. I hope in your friends case this will not happen, but from the symptoms you are describing to me it does not sound good.
I have done a lot of research on brain tumors from the time my mother was diagnosed until now ...and still puzzled to this day why more can not be done..
I wish you well.
I will think of you and your friend.

Posts: 4
Joined: Sep 2003

Your friend needs to go to a major cancer clinic for a 2nd opinion for treatment. Local hospitals can only do what they know. Cancer clinics know more because that's what they do, so they've done more and offer more! There are many good ones, but from my own 6 yr experience, M.D. Anderson in Houston, TX is the best. Phone calls will give you lots of information and help. I'll put her on my prayer list, because that is the ultimate medicine. MaryAnneKA

Posts: 3
Joined: Oct 2003

You definitely need to make an appointment with a teaching hospital. I agree that MD Anderson in Houston is one of the tops, especially in the neuro-surgery department. Dr. Raymond Sawaya is the Neuro-Surgery Department Chair and is recognized as one of the top neuro-surgeons in the world. They are also on the cutting edge of some clinical research.

Also, UCLA in Los Angeles has an excellent program. http://neurosurgery.ucla.edu/Programs/BrainTumor/MGP_Intro.html

Last, but certainly not least, the Brain Tumor Center at Duke University in Durham, NC is a top facility. Dr. Henry Friedman is one of the leaders in neuro-oncoloy research.

When I discovered I had a brian tumor over two years ago, I contacted each of these facilities and you would be suprised at how willing they are to help and get answers to your questions. For example, after my surgery, I e-mailed Dr. Friedmamn and Duke and he offered to take a look at the pathology slides from my tumor and provide his own diagnosis and recommeded treatment plan. My point is do not be afraid to reach out to the doctors and researchers at these facilities.

Posts: 10
Joined: Nov 2004

Research and get another opion! Look for a place that does Gamma Knife surgery (look it up on Google...remarkable). I had a tumor that was operable and the neuro-surgeon here was only going to do surgery. There is a 70% chance of recurrence. I went to the Barrows Institute in Phoenix where they did surgery and then 6 days later did the Gamma Knife surgery to "zap" the area around the void...and get another tumor that was down near the cerebelum (10% chance of recurrance of either tumor). Remember that 50% of all doctors graduated in bottom half of their class. Second opinion!

Peace, Love and God Bless you..The Old Hippie

Posts: 1560
Joined: May 2006

My friend was diagnosed Febuary 14, 2005. Had problems moving around , lost feeling on right side of the body. Doctor said it was a terminal brain tumor, type 5(?). He was given less then a year to live. He is only 40 with kids age 7. Removed the tumor by operation but couldn't retrieve all of it. Did the first treatment of chemo and radiation and that failed to shrink it all. Now faced with what to do next and they can't do the one time laser because of the side effects of that. He has choosen another round of chemo and radiation even with this at hand we have feelings on how this will work out. Through it all I think that the best advise anyone could give at this point of time is, enjoy the time left with them, they will have good days, take them, they will have bad days, let them have it. Their feelings will go up and down like a roller coaster ride but no matter what, take the juorney with them. Yes it hurts but at least you can say we gave our all and that we will have memories of our time both good and bad. Be the best friend and love one to them. They need it because the will feed on our strengths and us on theirs. Keep your heads held hi and don't let them forget that you are there for them but make sure you don't stand too under foot. Ask them what they want. On the days they want you there, be there. On the days they wan't to be left alone, leave them be. Sometimes it isnt easy to deal with these things but in the long run they will know that you are a true friend who loves them. Even though this has been a short time for us to be dealing with this. I have learn so much already and I am writing this because I think It helps to talk to others about their experiences and most of all I love my friend alot. I want everyone to know that its a battle of life, emotions, strengths and weekness. No matter what, together we will win the battle even if our own are lost. Times change and with change comes new technology and the understanding of the treatment. Be a part of it during and after. If we lose are battle try to continue for others. I know that ours will come to an end but until then I will not give up! I love him and his family to much to do so. So, good luck with the journey and may everyone continue to do their best. For thats all we can do, is try. Love and prayers to all.

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