Topic: Lapatinib

Does anyone have any info on a clinical trial called Lapatinib (sp?)  My husband's oncologist suggested we look into this with Dr. Lentz, another  oncologist we see at USC-Norris Cancer Center.  She did not give me much information, just that it acts like Avistan.  Has anyone looked into or tried this?

I guess this post could also go on the "good news" section.  Dan had a CT scan a week ago and it showed significant shrinkage of the liver tumor, from 6.1 cm to 3 cm.  Also, it did not show any other tumors.  When the doctors attempted a resection in August 2005, they found the cancer had metastisized to his abdomen.  The current CT scan did not show any evidence of this, so the "peritoneal studding," as they called the metastisis, has either disappeared or is still too small to show up in the scan---both good news.  Dr. Lentz is recommending a PET scan and, if the results show only the liver tumor, he is sending Dan to a biliary surgeon to discuss the possibility of resection! 

While we are excited about the CT results--and the possibility, however remote, of resection, we are being cautious.  Resection was tried a year ago when everything looked good on the CT scan, but during surgery they found that the cancer had spread to his abdomen.  It's almost unreal to believe that thiings have changed so much as to now allow resection.  But, we would not have believed a year ago that Dan would be here today, much less be doing so well. 

Dan went through some very rough times for awhile--frequent infections and hospitalizations, two times when his blood pressure dropped so low that the doctors were afraid we would lose him, fluid accumulation that resulted in having his lungs drained at least 5 times and his legs to swell so badly that he could barely walk, internal bleeding, and blood clots in his legs.  It seemed he was in the hospital almost every week.  Our local oncologist (not Dr. Lentz) told us his liver was failing and recommended we call in hospice.  We were preparing ourselves for the worst. 

Dan surprised us all when he began to make a real turn around.  The fluid has almost completely disappeared--he hasn't needed his lungs drained for at least 5 months, his legs are back to normal size, the blood clots have disappeared and no infections!  Even his CA 19-9 is almost back to normal. 

We do know that this disease is vicious, however, and that everything could change anytime.  But we are enjoying his hard earned victory and pray for many more good days---and who knows, maybe even a resection!  We will never give up hope.

The only supplement that Dan is taking is Ambrotose, a glyco-nutrient that is a derivative of the olivera plant and developed by Mannitec.  Some people have made claims that it has cured their cancer and others that it has helped to shrink tumors--all when combined with chemotherapy.   None of these claims, of course, have been proven and the medical community has said that Ambrotose has no curative powers.  We like to believe, however, that it has helped Dan's immune system fight the cancer and helps the chemo do its work more effectively.  It may just be a coincidence, but Dan began improving only after beginning to take Ambrotose.  We know one thing--it can't hurt  him and what do we  have to lose?  So far, the results have been good.

We are waiting to hear when the PET scan will be scheduled and will post again when we get the results. We continue to read everyones posts and blogs daily and always keep you in our prayers.  Val, we are thrilled you are out of the hospital and on the road to recovery.  We have daughters about your age with small children and know how important Moms are to the family.  We thank God that he brought you through this crisis safely and continue to pray that he will keep you well and on the road to healing!

Juanita

Re: Lapatinib

Juanita,

Thank you for posting this update.  I don't know about everyone else but for our family this has been such an up and down cycle.  Just when we feel like Mark is doing well, he's down and down hard, then back up. 

I'm interested in Ambrotose.  I've never heard of it and will do a little research on it this weekend.  If you have any good information on it, would you mind posting it Juanita.

Good luck on the PET.  We'll be anxiously waiting to hear the good results.

Stacie

Re: Lapatinib

Stacie - We know well how quickly the good days can change to bad.  I think one of the things we hate about this disease is losing the ability to plan.  You just never know when a bad day will hit.  We're trying to learn not to look ahead, but we have to admit we miss the times when we could plan a short vacation or even look ahead to the holidays.  This disease changes everything.  The positive side (I always try to find something positive) is that we are enjoying each day and the simple things in life more.  Time with each other and our children and grandchildren is so precious.  And we're learning not to "sweat the small stuff."  Life, unfortunately, is suddenly much too short.

The web site for ambrotose is www.mannetech.com.  You will find a link to ambrotose that should answer any questions you may have.   

I spoke to the radiologist at length today about Dan's CT scan.  He said he is "amazed" at how well Dan is doing -- he confirmed that the scan shows no new tumors and shrinkage of  his existing tumor.  Of course, the PET scan will give us a more definitive look and we're anxious to get it done.  Have to wait for approval from our insurance, unfortunately, and the delays are pretty frustrating.  Again, one day at a time.

Juanita