Wednesday, May 20, 2015

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.

Thursday, May 14, 2015

I'm leaving on a jet plane

leaving on a jet plane
Tomorrow we will finally be headed back to Utah.   It feels like we have been gone so long.  Both JoLynne and I will be so grateful to be home.  We don't know how long we will be there.  That should be known in the next few days.  The immunotherapy team in Houston is reviewing the pathology done here in Miami and comparing what they did in Houston to try and decide our next step.  The surgeons here are adamant that we proceed towards treatment as soon as possible so my guess is that our stay in Utah won't be near as long as we would like.

Yesterday I had my weekly doctors visit.  They wanted to see a post surgical CT scan of the area so we went over to radiology.  The nurse was a funny lady, kind of a little off.  As she was taking me back JoLynne whispered to me, "Speak up if she messes up."  Anyway, on the way back she commented on how white the skin was on the side of my face.  I told her is was a graft.  She said, "Where did they get such white skin?  Was it from your butt?"  That still makes me laugh thinking about it.  I told her it was from my leg. I had to show her the scar to prove it.

Wednesday, May 6, 2015

Poco a poco se anda lejos

Well, starting with my title.  One of my favorite sayings that I often heard on my mission in Bolivia.    Translated it means, "Little by little one can walk a long ways."   I feel like I have walked a long way.  Hopefully this cancer journey is nearing it's completion soon with a happy ending.

Yesterday was another doctors visit for me.  They took out all of my stitches and the staples in my head.  The incision on my scalp went all the way from my right ear  almost to my left ear.  Honestly, I don't even want to know what they had peeled off while I was sleeping.

It feels good to have the staples gone.  They were annoying.  They are still nervous about my leg.  It was such a wide incision.  I know that the flap on my face is over 3 inches wide in one place.  That means that the incision on my leg had to be that wide.  That's kind of freaky too.  They covered my leg with a ton of steri-strips after the stitches came out and told me to be careful about walking too much.  They don't want it to open and neither do I.

We talked with Dr. Marx for a few minutes.  He is the nicest guy.  He is quite famous among oral surgeons but you would never know it by talking to him.  He is just really down to earth and unpretentious.  He got us a copy of the pathology report done by University of Miami.  We still haven't seen the report from Baylor.  Anyway, the report goes site by site sampled.  Many of them had no cancer.  Of those that did have cancer most showed 50-60% of the cancer cells were dead.  That is good.  Both Dr. Marx and the microvascular surgeon, Dr. Tunsin, encouraged us to get back to Houston soon and have more T-cell therapy.  In their words, "We have given you a beautiful blood supply to that area to help the T-cells get access and we have removed nearly all the cancer.  Now if ever is the time to hit it."  I think that they feel that we need to act before the tumor has a chance to re-grow.  Needless to say, we feel the same way.

In the meantime, every day is a gift.  I am grateful for every one.