Met to the Spine

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Met to the Spine

by RickD on Wed May 27, 2009 12:00 AM

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My wife was diagnosed with NSCLC in June, 2008. It has met to the ribs and multiple spots on the spine. She has received 2 rounds of radiation for the rib and spine areas and CEA level initially at 1219 fell to 46 with Avastin, Taxol and Carboplatin.

She fell victim to the rare side effects of Avastin with inflamation to the bowl but no perferations (thank goodness). The second line treatment of Alitma was ineffective and CEA has now risen to 180.
She is now receiving Tarceva and Gemzar with Zometa for the bones.

I'm curious and very scared about the spread to the spine. Has anyone had experience with this? What lies ahead? I pray for a break and, of course, a cure.

RE: Met to the Spine

by nevah on Thu May 28, 2009 12:00 AM

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On 5/27/2009 Rick.D wrote:

My wife was diagnosed with NSCLC in June, 2008. It has met to the ribs and multiple spots on the spine. She has received 2 rounds of radiation for the rib and spine areas and CEA level initially at 1219 fell to 46 with Avastin, Taxol and Carboplatin.

She fell victim to the rare side effects of Avastin with inflamation to the bowl but no perferations (thank goodness). The second line treatment of Alitma was ineffective and CEA has now risen to 180.
She is now receiving Tarceva and Gemzar with Zometa for the bones.

I'm curious and very scared about the spread to the spine. Has anyone had experience with this? What lies ahead? I pray for a break and, of course, a cure.

When did she start the Tarceva?   It is helping many patients.   I was diagnosed in September 2008, 64 years old, nonsmoker, female.  Tumors in lung and several on backbone.   Started in a clinical trial using Avastin along with Tarceva.    Within 6 to 8 weeks, the tumors were down to nothing and the hole in one of the backbones was about 1/2 grown back!     I was very careful not to fall during that time (snow and ice and roller skating parties were verboten)  because of those spots on the spine.   I'm now just on Tarceva because it was not shown that the Avastin was help for the Tarceva and the Avastin has 5% chance of causing major bleeding and 2 to 3% chance of fatal bleeding.   I took Zometa 5 months ago and just had another infusion this week to strengthen those bones.    To me, the spine was a scary thing, but it is doing well now.     My husband also ordered every book he could find on what we could do from home.   I take a number of supplements, eat lots of fruits and vegetables, whole grains, some protein, flax, green tea,   cottage cheese blended with flax seed oil, walk an hour per day, seek happy times and distractions if down because endorphins are a healing factor.    We're keeping my immune system strong and it probably helps with the side effects.   The worst one to me has been a slight thinning of my hair, about which I should not even complain; it was just a surprise.  The family helps a LOT.  I've read books from survivors about what they did.   The kept their spirits up, kept looking for solutions, (2nd opinions are good for "better" or for confidence you're doing the right thing).   Hope some of this helps.

RE: Met to the Spine

by RickD on Thu May 28, 2009 12:00 AM

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She started on Monday of this week - 3 days ago.  She is also concerned about the acne/rash side effects.  The Gemzar is going to really lower her counts so a shot will be required.

She is 48 years old and never smoked as well. 

Exercise is just a happy memory for her now.  The counts are so low that walking around the house is tough.  I really should be better about encouraging her to get up but she gets so weak, so fast, it is painful to bear.

RE: Met to the Spine

by nevah on Thu May 28, 2009 12:00 AM

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On 5/28/2009 Rick.D wrote:

She started on Monday of this week - 3 days ago.  She is also concerned about the acne/rash side effects.  The Gemzar is going to really lower her counts so a shot will be required.

She is 48 years old and never smoked as well. 

Exercise is just a happy memory for her now.  The counts are so low that walking around the house is tough.  I really should be better about encouraging her to get up but she gets so weak, so fast, it is painful to bear.


I've not heard about the Gemzar.  What is that for?     I got a bit of rash and white bumps at first, now just have a red nose and it feels like a sunburn inside nose.    My nieces promised to think "what rash."    If you read around this chatroom, you hear about those who have been on Tarceva for 4 years and more, living with quality, the side effects going in and out.    I don't understand why she is being made so weak.  It can't be good for her to do without the exercise.    I've not heard about counts, have not faced that.   Blood work every month always comes out well within the safe range.  Not an issue.    I'm praying for you and your wife's wisdom and peace right now. 

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