Upcoming MRI in two hours

blackngray

I'm full of worry. See I was diagnosed with an AA3 in August of 2010. Since then everything has been according to doctor's rules and a bumpy yet predictable road through this dis-ease. Suddenly in Jan 2011, my docs tell me there's enhancement! It could be radiation necrosis (where the radiation has deaden part of the brain-looks like a growing tumor unless it grows in future MRI). Surgery removed the huge tumor on the left parietal lobe, now a spot is appearing on the right, in the middle white mass, inoperable. If it's not radiation necrosis and it is indeed enhancement, I'm toast. I'm a single mom of one seven year old bundle of happiness. She's my world. Both of us are living with my parents now. My daughter's father is the best father to her but the worst person to get along with with me. He causes me the most stress. My boyfriend of six years isn't coping with my cancer well, he cheated on me. I took a semester off from school to go through surgery, radiation, and chemo. Now I'm on monthly temodar. I'm scared. So scared. If this is a new growth, life will be cut short before I want it to be.
I'm venting here while I take a break in homework. Any encouraging words would be so nice right now.

dmercer1

Praying that it is indeed
Praying that it is indeed necrosis and also for your peace of mind.

Grace and Peace,

Danny

cindysuetoyou

I tried to read your post to
I tried to read your post to my 23 year old daughter and I wept as I read it aloud. I am so sorry for what you are going through. I cannot even imagine it. My heart breaks for you, for your daughter, and for your parents.

Did your doctors discuss any treatment options with you if it turns out that it is tumor growth? I don't know very much about AA3--my son is battling anaplastic oligodendroglioma (grade 3). Right now he is doing good, but we know that the next MRI could be a different story. We have heard that Avastin has helped in the fight against brain cancers, and I have heard of other chemos and treatments. I just don't know how to spell the names of the chemos.

We hope it never comes to it, but our oncologist is heading up a clinical trial involving an experimental way to cross the blood brain barrier and deliver chemo directly to the tumor location. Please ask your doctor what other treatment options are available, and if he doesn't suggest anything, I would look for another opinion.

I've read on this very site about several people whose doctors told them there wasn't anything more that they could do, and they got another opinion and found another doctor who had some different ideas and they are still fighting hard. PBJ Austin and momsworld are two of them...

I will be praying for you...for peace, strength, and healing. Please let us know the results of your MRI, and please fight hard to stay strong and to keep hope alive.

Love and blessings,
Cindy in Salem, OR

AngKad42

Many Prayers and hearts with love
Sorry to hear what your going through hun, my husband and I are praying for you and sending lots of love your way. We are battling melanoma, in fact hubby gets results from his scans and blood work tomorrow. He had a tumor removed from the right side of his brain in Dec. 2010, then had radiation and took temodar also. His cancer is stage 4 but as of jan 2011 they said he was disease free, the new scans will tell if thats still the case. The past months have been hell, he gets depressed and upset and is still feeling the effects of the treatments, it breaks my heart to watch him go through this, I can't imagine having to deal with all the BS these treatments bring and then having to deal with what your dealing with, taking care of your daughter and having to deal with boyfriend not handling the stress. I have seen those around us not dealing well and it baffles me. I can't imagine not being there for my husband; even on the worst days when he's ranting and angry at the world, I have to be there, no other way for me to be. Please feel free to vent to us, and think positive thoughts honey, keep your head up and please don't feel alone. Sending up loads of prayers and love for you and your daughter. Keep us posted.

momsworld

Dear Blackngray
Hi there,
My daughter has AA3. She is 13 yr old. I know the fear of an MRI. My daughter has had 4 brain surgeries to remove new tumor growth and everytime we thought the MRI would be clear, it wasn't. I finally put my foot down and brought her to a teaching hospital in Boston. She goes to Dana Farber in Boston. They have put her on a regimen of medications that she takes daily. She alternates between 2 chemo drugs, Etoposide and Cyclophosphamide every 21 days and has Avastin IV every other week. In February she had her 2nd clear MRI. You might want to research that and bring in what you find to your doctor. Do not be afraid to show your doctors what you find on the web as many doctors are willing to work with other Dr.'s/hosp. I have always believed in God, but after this happened in March 2010, I called him out and asked him to show me he was here with us and low and behold he did. If you do not pray, it's never to late to start. It is very easy to get depressed and give up hope, but you can't. Always have hope. Everyday there are new treatments being tested and they will find something that will work for this someday. Dana Farber is doing alot of research on brain tumors as with other hospitals. Please try to stay strong, for you and your daughter, have faith and do not give up hope. We can keep in touch if you would like?

palmyrafan

cindysuetoyou said:

I tried to read your post to
I tried to read your post to my 23 year old daughter and I wept as I read it aloud. I am so sorry for what you are going through. I cannot even imagine it. My heart breaks for you, for your daughter, and for your parents.

Did your doctors discuss any treatment options with you if it turns out that it is tumor growth? I don't know very much about AA3--my son is battling anaplastic oligodendroglioma (grade 3). Right now he is doing good, but we know that the next MRI could be a different story. We have heard that Avastin has helped in the fight against brain cancers, and I have heard of other chemos and treatments. I just don't know how to spell the names of the chemos.

We hope it never comes to it, but our oncologist is heading up a clinical trial involving an experimental way to cross the blood brain barrier and deliver chemo directly to the tumor location. Please ask your doctor what other treatment options are available, and if he doesn't suggest anything, I would look for another opinion.

I've read on this very site about several people whose doctors told them there wasn't anything more that they could do, and they got another opinion and found another doctor who had some different ideas and they are still fighting hard. PBJ Austin and momsworld are two of them...

I will be praying for you...for peace, strength, and healing. Please let us know the results of your MRI, and please fight hard to stay strong and to keep hope alive.

Love and blessings,
Cindy in Salem, OR

2nd Opinion
I agree with Cindy about the 2nd, 3rd or 4th opinion. Please don't limit yourself to what one doctor is telling you. The options they have may be the only ones they know about. You need to know ALL your options so you have the best information available that will help you in the days, weeks, and months ahead. I know it is time-consuming and can cost $$ but you have a beautiful little girl that needs her mommy. I know, I'm alive today because my daughter (age 9 when my tumors were discovered) gave me HOPE, Incentive and a Goal (if you will) to keep fighting. I got the Blessing of watching her grow up, graduate high school, get married and now is getting ready to Bless us with her 4th child (all girls).

As for the rest of the stress? I know it may be hard to do, but you need to focus on you right now. I'm in the middle of "nesting". I'm cleaning out, clearing out and booting out. Including people who are causing me stress right now. Surround yourself with people that you know you can count on; regardless of what the future holds. You're worth it!

Please, please, please, also do not "borrow" trouble worrying about what the MRI will or will not show. Our worries get here soon enough without our imaginations running on overload (sounds easy I know, but trust me it's not!!). Clear your mind, tell yourself that this is simply an exploratory MRI and that until the technician and doctor's reports come out that you know nothing about what the mass is. Because you really don't.

You and your family are in my prayers. Please keep us posted as to what you find out and please don't ever give up HOPE!

Blessings,
Teresa

PBJ Austin

momsworld said:

Dear Blackngray
Hi there,
My daughter has AA3. She is 13 yr old. I know the fear of an MRI. My daughter has had 4 brain surgeries to remove new tumor growth and everytime we thought the MRI would be clear, it wasn't. I finally put my foot down and brought her to a teaching hospital in Boston. She goes to Dana Farber in Boston. They have put her on a regimen of medications that she takes daily. She alternates between 2 chemo drugs, Etoposide and Cyclophosphamide every 21 days and has Avastin IV every other week. In February she had her 2nd clear MRI. You might want to research that and bring in what you find to your doctor. Do not be afraid to show your doctors what you find on the web as many doctors are willing to work with other Dr.'s/hosp. I have always believed in God, but after this happened in March 2010, I called him out and asked him to show me he was here with us and low and behold he did. If you do not pray, it's never to late to start. It is very easy to get depressed and give up hope, but you can't. Always have hope. Everyday there are new treatments being tested and they will find something that will work for this someday. Dana Farber is doing alot of research on brain tumors as with other hospitals. Please try to stay strong, for you and your daughter, have faith and do not give up hope. We can keep in touch if you would like?

I second the idea for a second opinion
Two years ago my kid sister discovered at age 25 she had 2 masses in her brain, then they later found a 3rd one that was a tiny speck. Her first doctor said they were all inoperable and tried to treat it with steroids. When that didn't work he was sort of at a loss not knowing what the masses were and thinking they cannot be removed.

She went to MD Anderson in Houston for a second opinion and right away Dr. Sawaya said he could operate and remove the largest mass. They did the surgery and she was diagnosed with AA3 in March 2009.

She went through chemo and radiation and at first there was no change. They stepped up the chemo and within a year there was no visible cancer on her MRI's. It has now been a year since she had any visible cancer on her MRI.

My point is this: If my sister had just taken the word of the first doctor, I hate to think where she would be today. If there is any way possible please get to a hospital such as MD Anderson or one of the others mentioned above and get another opionion. As momsworld stated so beautifully, every day there are new treatments on the horizon so there is always hope. Sometimes you have to find a hospital that's a little more on the cutting edge to get these treatments, but it's well worth the effort.

Wishing you and everyone on this board the very best. You are all in my heart and my prayers.