February 27

Sorry for the delay in updates.

Tuesday: Jeff was discharged from CTRC and admitted to a hospital room for observation. He got some IV Benadryl for itching, his first symptom, and took a very good nap. Overall, he did well.
Wednesday: Jeff was discharged from the hospital in the morning and other than redness and itching was doing fairly well. We went to the hotel where he realized he was very tired. He spent the rest of the day resting.
Thursday: As predicted this was not a good day. Jeff looks like he has a severe sun burn and the amount of area involved is increasing. He is exceedingly tired and the itching from the rash he developed is severe. He also is very tired. His blood pressure dropped so he got fluids in CTRC. He has a fever, which is just adding to him being miserable. The chills are so bad his entire body is shaking uncontrollably.
Friday: More of the same from yesterday, except he couldn't focus when he tried to read. We went to ophthalmology and the diagnosis was dry eye, probably from the benadryl and fever. His B/P is okay today, but he just feels very bad with fever, chills, 'sun burned' skin and the rash which now has blisters, especially on his back. He began to feel better as the day went on.
Saturday & Sunday: Jeff felt better as each day progressed. He felt well enough to visit Abby, our dog, who my brother  Tom and sister-in-law Beth have been God sent in taking care of her for us. We visited more family on Sunday. Now the only issues are the rash, his skin color is returning to normal, and he always feels hot. Tylenol seems to be controlling the back ache he developed  Saturday night.
Jeff hurt his left foot a few weeks ago and it continues to cause him pain. It makes it difficult for him to walk any distance.
We have daily visits for lab and the doctor through Thursday.

February 23

Jeff does not feel well. He feels like he has the flu on steroids. He has a rash, that is improving. His skin is flushed, his stomach is upset, achey and he is extremely tired. These are all symptoms they said he would have. We hope that he will begin to feel better in the next few days. 

February 20, Treatment begins

Jeff received his investigational immunotherapy (NKTR-214) and Optivo today starting about 3 PM. He is tolerating it well. He is in the CTRC (Clinical Transitional Research Center) for 24 hours then will be in a room for observation for 24 hours. He is the only patient they have overnight tonight. Since it is an investigational protocol they are drawing a lot of blood, but put in IV access so that he is not "stuck" every time they need the blood.

 

We are staying at the Wyndham in the Medical Center when he is not in the hospital.

 

Everyone says that he will feel pretty good until Wednesday or Thursday when he will probably start having significant flu like symptoms, but the severity is different for everyone. We are hoping for the best. Thank everyone for their concern and prayers.

 

Felicia

February 15

We signed all of the paper work, got our questions answered, and confirmed that Monday, Feb 20th will be the start date of the clinical trial.   Fortunately, my two lung metastasis are too small to biopsy, plus they haven’t grown any since December, so one of the more painful aspects (lung biopsy) of this trial won’t happen.    The inital 2 cycles may go as long as 14 days each, with 3 days in between.   We’ll be staying at a hotel nearby MD Anderson and, assuming I’m not feeling to bad, should have to opportunity to visit with our Houston friends.   My brother in-law, Tom, has generously to keep Abby for us which will, undoubtedly, keep their household in more of an uproar.  After these 2 cycles (about a month), we will be returning to MDA weekly for EKG, blood tests and more drug infusions for, probably, at least 6-12 months.   This will, of course, depend on the success of the two drugs (NKTR-214, Obdivo) and my ability to tolerate them. 

February 2, 2017

We have finally reached a decision and Jeff will be going to MD Anderson to participate in a clinical trial starting February 20th.   The clinical trial seemed to have the best chance of success with the least amount of toxicity, plus our doctors at MD Anderson recommended it.   Initially, there will be 2 cycles, each 11 days, with a 3 day break between the two.    The good news is that only a few days of each cycle will be in the hospital, the rest will consist of staying in a hotel and going to the hospital for daily lab and follow ups.  We (Felicia) will keep you updated on Jeff’s progress.   Thanks for all of your prayers.