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Latest CT scan not so positive

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zenrookie View Drop Down
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    Posted: Sep 14 2008 at 6:53am
Hello everyone.. I wish all of you the best always,
 
I am Susie's husband. She has TNBC with mets in all lymph nodes and Stage IV.
 
The first CT scan they said showed 'significant' reduction of the cancer cells throughout the lymph nodes.
 
We recently finished the second CT scan and evaluation. They said even through the lymph nodes above the waist seem to still show reduction, the lymph nodes in the legs are larger.  THe doctor said she did not know what to make of it; possibly a yeast infection, etc caused lower lymph nodes to temporarily swell.  Yet in same meeting she mentioned maybe with the next CT, if this is still the case she discussed abandoning the Avastin/Gemzar/Carboplatin, and starting this clinical trial involving a drug known only as RAD001. 
 
With such success since finding out in March, this comment to switch possibly Susie to a clinical trial that is still trying to find the right dosage to give persons, I am ... afraid, worried... have worries and questions that at least during that visit I was unable to vocalize.  I know nothing of Rad001, and am trying to learn about it. Plus, the clinical trial scares me in that they aren't certain at that drug's stage of trials what is appropriate dose. This is my wife's life at stake.  I  (we) are frightened.  This doctor is without a doubt an excellent doctor... but is that enough?  Could this be a wrong thing to just nod our heads and accept this doctor's judgement?  We are not ready to lose faith yet and think of going to another place for another excellent cancer center for their opinion.
 
These TRIALS especially when they are still looking for the right dose, how bad the side effects can be tolerated. I'm terribly frigtened. And maybe soberly this is the facts of stage iv tnbc with mets.  Could anyone provide me with something. Even if some veteran advice or opinion. I would be so grateful.
 
Most Sincerely,
Paul
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Sep 14 2008 at 7:21am
Hi Paul,
 
I beleive that Linda...".txhart" is getting the RAD001. I may be wrong, but I know that I had Googled it and sent someone the link, or posted it. She lives in Houston. You could pm her, and I know that she would respond. That is IF she has power, as I know there are many without power in that area.
 
I cannot imagine how worried and frightened you and Susie must be. There is the fear of the unknown, and in this case, with a new drug,and not knowing the side effects. Since I am a novice at this Paul, and can only verbalize what my daughter Lori has experienced, my first reaction is to ask if there are more doctors collaborating on the use of this drug, and if you can speak with them.
 
I know that many of the gals will respond to you, as always.
With love and many hugs to you and Susie,
Nancy 
 
Found these links
 
 
 
 
 
 
 


Edited by Nancy - Sep 14 2008 at 7:26am
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zenrookie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zenrookie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 14 2008 at 12:32pm
I want to thank you for all that you have said and the links you provided me. I did not think about the storm. I will give some time. Our chemo is not until this wed.  But I am so grateful. PM
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Sep 14 2008 at 5:11pm
http://www.nosurrenderbreastcancerhelp.com/Triple_Negative_Disease.html
Dear Paul, I tried to copy the section on m-TOR (what they are looking at in the RAD001 trial. Please read the section the opinions of a cancer researcher who generously explains the most complex scientific things so that we might all understand what they are trying to do to us with different treatment.
 
You did not mention what else was going to be used in the trial as a chemotherapy...is it FEC?
 
Please get out your piece of paper and divide the page in 2 and then start asking the questions?
 
1.  What else is being proposed for chemo if you do not take part in this clinical trial?
2.  What testing (scanning) is being done to see if the trial protocol is working?
3.  How many are enrolled?
 
You did not mention which facility is running the trial.
 
You did not mention if it was a PET/CT scan looking at the lymph nodes?
 
Give us some more information and we can brainstorm and possibly we can come up with some more questions to ask or some of our other amateur researchers can find something definitive for you. Just know if it is out there someone will know something or someone with information.
 
Connie
 
 
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zenrookie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zenrookie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2008 at 6:43am
Dear Connie,

Thank you for the link. I will read it.

At this point I don't know the companion drugs with Radoo1

here are some answers to the questions.
1. Trial would be at Vanderbilt  our current dr. is Ingrid Mayer
2. IT was a CT scan. looking at the lymph nodes

1. THe alternative if we do not take the rad trial has not been mentioned. I think back to March when we had to decide on starting with Avastin; but the doctor in the last meeting only said if the lower lymph nodes do not shrink like the ones above the belt that we would consider the rad.  We were at that visit not given a chance for discussion. She almost said it and moved right back to the subject of focusing on taking an October CT scan to try and see if they can see what is happening.
2. Although a PET Scan was used to first locate and find the extent of the metastasis, Vanderbilt has been using CT scans to look at the lymph nodes since. THe first one showed significant reduction in lymph nodes, for example all the cancer in her neck which was substantial were GONE. subsequently, other lymph nodes were described as significantly reduced. Our second CT scan was just recently. That is the one in which the above the belt lymph nodes continue to be getting smaller, but the inguinal and another one (i want to say femoral) were larger.  This puzzled our doctor and therefore the scheduling of continued chemo until an october CT scan in which they will re-evaluate.
I am sorry to say I don't know about the Rad trial since we were first put on a non trial chemo regimen of avastin/gemzar/carboplatin.

Thank you for helping me. PM

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