Final Plans

We have now heard from the tumor boards at Wake Forest and John’s Hopkins.  Both are recommending a 3 drug chemo cocktail very similar to the one used to treat Ernie initially.   This combo is supposedly well tolerated with less toxicity than most other combinations. 

We will start Wednesday, December 24,  at Wake Forest's new chemo center in Clemmons.  Ernie will continue to receive chemo weekly for 6 weeks then Wake Forest will repeat the scans to see if the drugs have been effective.  If not, the cocktail will be changed to something stronger for another 6 weeks, etc.  This is a standard-type protocol and is estimated to provide 10 more months of life--a definite improvement over the estimate of "weeks or months" that we were given if we do nothing.  The chemo should also eliminate Ernie's very sore throat and some of the swelling in his face and throat, which could enable him to talk and even swallow food again! 

The new potential wonder treatment is immunotherapy drugs.  These drugs are thought to add significantly to the expected life span and even to be potentially curative.  Hopkins is doing several clinical trials with these drugs.  However, because of Ernie's scleroderma, he is not eligible for these trials.  We asked if they would allow him to follow the protocol but not be in the clinical trial—a practice we observed when we were treated the first time.  The Medical Oncologist who is now in charge of Ernie's cancer care at Hopkins, said that these drugs are "contraindicated in cases of scleroderma because they rev up the immune system" so she could not recommend this approach for him.  

 

Of course, Ernie is not one to take "no" for an answer.  He has already contacted his Scleroderma Doctor for a second opinion.  She is a very practical doctor who understands that having scleroderma only matters if you are alive.  She promised to speak to the Medical Oncologist directly to see if there were any of these drugs she would feel comfortable with.  So we will continue to pray that Hopkins will eventually give Ernie the immunotherapy.  But everyone has been clear that there is no proven cure for Ernie's condition.   It is just a matter of time. 

 

So with this blog, we are signing off to devote our energies to the big fight.  Ten months is an average--our doctor has patients that are alive after 1 and 2 years--and Ernie is determined to beat the odds as well.

 

If you would like to "talk" to him, you can text him (336-407-3800) or email him at fackelmn@ix.netcom.com. 

 

Thanks again for all of your help and support.  You have given us the energy to carry on.