Red rover, red rover, send Eric back over

It has been wonderful to be home.  I forgot how nice our own bed is.

We talked with the doctors from Houston yesterday.  They have been talking with the immunotherapy board about what the next best step would be.  My tumor has at least two unique markers on the tumor cells.  One marker is called GD2 and the other is called HER2.  Our first time in Houston they designed cells to target the GD2 marker.  After reviewing the pathology reports they have decided that they would like to put in new cells aimed at the HER2 marker and see what that does.  The GD2 seemed to have killed about half of the tumor but the tumor could have died for other reasons.  We aren't sure.  The HER2 will be very similar to the GD2 except that they are going to give me 5 days of chemotherapy before injecting it.  The theory is that if you clear our some of your own T-cells that there will be more room for the injected, enhanced T-cells to expand and take over.  This will be the sixth time I have gone through chemotherapy.  Ughh...   We will probably have to be back in Houston in about 2 weeks.

We knew that this might be an option so when I was in Houston last time I had them take blood and prepare the genetically modified cells targeting HER2 just in case.  So, the cells have all been engineered and are sitting in cold storage waiting to be injected.  Oh, another important difference in this study is that they will keep injecting more T-cells every 6-12 weeks as long as the tumor is responding.  I really like that idea.  T-cells, even genetically enhanced ones, don't live that long.  I love the idea of sending in fresh troops over and over until the job is done.

This same doctor did this same study a year ago without the chemotherapy.  You should understand that to qualify for these studies you have to have exhausted all conventional treatments.  In other words, there is no known cure.  The last time he did this study 50% of the patients were still doing well at the end of a year.  That doesn't seem that great but when you consider who they are working with it is really very promising results.

So, last night JoLynne and I went for a walk around the block talking through all this stuff.  It's a "hard pill to swallow", so to speak.  Knowing what chemo is like doesn't make it easier I'm afraid.  Anyway, we came home and were laying in bed.  I was cold and had a blanket.  JoLynne said, "What do you think Eric?"  I told her that I had a very distinct burning in my bosom  Then I pulled back the blanket and showed her the electric hot pad on my chest.

Tubing in November

You know, I would like to go just one day besides Sunday without getting something in the mail from a doctor or hospital.  I guess that isn't going to happen soon since I keep going to see them so often.  Oh well.  My doctor, Dr. Wallentine stopped to talk today for a minute in the clinic while I was getting chemo.  He mentioned that our offices are close and that he often sees me crossing the street or getting out of my car on the side towards traffic.  He told me "I almost ran over you again the other day"  I told him, "I bet Selecthealth would pay you nicely to run over me"  He said, "Probably true but keeping you alive is my goal, so I can't run over you"

On Thursday we went to see the ENT.  I can't hardly hear at all in my right ear anymore and it feels swollen like an earache.  They did a hearing test and confirmed what I already knew, basically almost no hearing in that ear, really none in the high range and the eardrum wasn't moving right.  The doctor took a look and saw some fluid back there and recommended a tube in my ear.  They told me that it could be done at the hospital or in the office but warmed me that there would be quite a bit of pain.  I chose the office.  The anesthetic was pretty easy.  When they took a scalpel and cut my eardrum my hearing immediately got a little better.  The vacuums was loud but not so bad.  It was weird having the tube put in, I could hear it click into place.  Anyway, I feel like I am hearing better now.  And the pain they warned me about was like nothing.  I guess it is all relative.   On a scale of 1-10 that pain was like a 0.5.  I live in the 3-5 range with peak pain around 8 every day so that was nothing.  I wish that the pain of that surgery was all I had to endure.

In the meantime I had a great call from the scientist in Houston.  Basically she said that the T cells from my blood are growing really well, that she has already talked to the HER2 people so that I can move directly to that study if GD2 doesn't do what we want.  We had also wondered why they couldn't just keep adding T cells for GD2 if is was working to replenish the ones that were getting tired.  She said that we could do exactly that.  If is working I would just sign up for the study again, and they would keep giving me larger and larger doses until the cancer was defeated.  We loved the sound of that.  I wish January 5th could come sooner.

Another blog

Isn't language interesting.  Twenty years ago if I told someone that I was going to blog someone would have probably handed me a bucket to catch it in.  Now it means something completely different, or at least I hope so.  Hopefully what I write is more than verbal vomit.

This last Monday I had blood collected for the clinical trial in Texas.  I came into the doctors office holding this fairly large box full of empty vials and handed it to one of my sweet nurses.  She took one look and said, "Wow, that is a lot of blood."  About two thirds of the way through she couldn't get any more to come.  I wondered if I had run out but she managed to pull a little more and finish the job.  I'm still here blogging so I guess that something is still circulating in there.

Kids in Oregon after we abandoned them

Monday afternoon I had a "PEG tube" put into my stomach.  I have really been struggling to swallow. I just can't direct traffic in the back of my throat.  Sometimes the food goes down, sometimes it gets stuck, sometimes it comes out my nose, sometimes it goes into my lungs.  They think that is the reason I got pneumonia this last week.  Sometimes you just have to laugh.  A few days ago I had just eaten dinner and had run over to a friends to take them some tomatoes.  As I was getting out of the car I sneezed and out popped a carrot, not a small one.  I just looked at that and thought "Oh brother".  Anyway, with this tube directly into my stomach I can still keep nourished and not have carrots popping out of my nose.

It was an emotional day for me.  I remember looking at that box as we sent it off to Texas via FedEx thinking, "Okay God, now you have my blood, turn it into a miracle."  It seemed so final.  Then getting the PEG tube seemed like another admission to my declining health.  Arghh, I hate that.  I just kept repeating in my mind, "prepare for a miracle Eric"  We are full of hope and we trust God.  Sometimes I just think "I believe, help thou my unbelief."  It's hard to have perfect faith all of the time.

My angel wife and our granddaughter

I talked to the lead scientist today from Baylor.  She is very nice.  It sounds like treatment will probably begin January 5th.  It will take that long to engineer the cells.   Probably we will need to stay in Texas for about 6 weeks.  This is a phase one trial meaning they are testing safe doses.  She told me that it appears that the initial dose that they had thought to start with appears safe so she is going to jump me up to the next dosing group right from the start.  That is good news to me.  She also said that my blood shows that I am positive for another marker, HER2.  That is also good news.  If the GD2 doesn't work they can try the HER2 instead.  She believes a trial against osteosarcoma using HER2 will begin within a few months.

In the meantime, I haven't had chemotherapy for almost three weeks now and boy do I feel good.  I just love how I feel when I'm not being poisoned.  Chemo will begin again on Friday so I will try to enjoy feeling human again even if it is only for a few days.

If joy had a face, this would be it.

This last week we had most of our children with us.  Seth had flown out to go to his cousins ring ceremony.  Shanelle, Mike and Vivian came to bring our car back from Oregon.  That was a clever way of us to get them to come.  Sunday we took up the entire row with our family.  That made me happy.  It was like the good old days.  They have all gone home now but it was nice while it lasted.