leptomeningeal carcinamatosis

Hello:

My wife Lisa is going through the 16th month post-diagnosis (Nov 2012)  of leptomeningial carcinamatosis from her original HER-2 left-breast diagnosis in March 2009. Some background...

Her mother died from breast cancer after a 15 year hiatus post mastectomy at the approx age of 62...

my wife is 51 now...no BRACA genes tho combination middle eastern/albanian/french canadian background

we have been married 24 years. She was diagnosed with Her-2, mass on left breast approx 6cm in 2009. Clinic in E Boston missed all the signs...(calcifications, had pain in breast and shoulder from shoulder injury unrelated but could not lift arm for good mammo) for 2 years

she is currently (3-2014) suffering headaches, backache, and nausea (intermittent)

On a positive note: Up until 3 weeks ago, or March 6th, 2014,  she has been doing everything a hard-working mother/wife does at home: cooking (great cook); cleaning; accounting;taking care of 2 boys and me. That is a long time for a good quality of life after such a diagnosis. 

Then, sudden confusion/disorientation/ unable to talk. Drive 62 miles to Mass General Hospital. She goes into a coma. They suspect viral meningitis after a a combnation of anti-biotics/anti-virals/anti-seizure meds gets her out of the coma. Progressively better over a week to go home. Suspected lumbar puncture headaches and backaches after home but doesn't get better much. Now she is mostly bed-ridden, confused about time/what just occured in last hour. But coherent. Only in pain and only willing to take Tylenol: hates pills and loss of control which makes it very difficult for me to see her in pain (headache, back ache).

Up to this point she has been on Tykerb/Xeloda/ and some alternative therapy we figured would not hurt her and her oncolgist agrees - essiac tea and apricot seeds every day (6 seeds and 3 small teas).

Something has been working. Even her Oncologist has been very pleasantly surprised about her progress to this point. (They are fantastic BTW...Dr Jerry Younger and Nancy Shaeffer NP at MGH. We absolutely LOVE them)

So my (our) thoughts Xeloda and Tykerb may be a good combination. Essiac tea and apricot seeds may have really helped too. Would advise people from our experience this is a good combination.

Our hope is strong in the resurrection as related to in the Bible....I will see her again on this earth and we will see God's original  purpose for this earth realized (as he says...He did not create it simply for nothing. He formed it to be inhabited...) Isaiah 45:18 and at Acts 24:15 the Apostle Paul said: “I have hope toward God . . . that there is going to be a resurrection of both the righteous and the unrighteous.”

  We realize not all people know of or understand this, but Jehovahs Witnesses have a a very solid foundation for giving hope, You really ought to listen next time one comes to your door. I am very grateful to know the truth about death. It is an enemy but it will be done away with. (Revelation 21:3,4)

My lovely wife...lovinglisa.blogspot.com