Goodbye PDL-1 - Hello Chemo Blast!

Well – we continue to be confused by my tumors. Yesterday I went to Stanford to find out the results of yesterday’s scan. Dr. Fisher and his team were expecting to see significant cancer growth. But they didn’t.

In fact, there were no additional tumors on the scan and the tumors that they could measure had not grown. However, due to the fact that I’m having pain and because my CEA continues to get higher, we have to assume that there is tumor growth in my nether regions. Unfortunately, that area of the body is very difficult to see in a scan.

Therefore, today, after 3 wonderful years, I officially went off of the anti-PDL1 study. Interestingly, I was on the study longer than any other patient at Stanford. Furthermore, according to Dr. Lenz at USC, he told me that he thought that I had been on immunotherapy longer than anyone else in the US. That is truly amazing because Genentech had decided within weeks of me starting the trial that they weren’t going to allow any other colon cancer patients on the trial because it wasn’t showing that it would work for colon cancer. But, it worked for me!

Within the next week, I will be getting a port inserted in my chest to begin the next difficult phase of my cancer journey. In two weeks I will begin a 3 part protocol that will take place every two weeks. I will receive irinotecan which is supposed to take my hair (I will be using penguin cold caps to ensure that I don’t lose a strand) and give me some other difficult side effects. I will also be infused with vectibix which is expected to cause a terrible looking rash on my face, chest and arms (I will be getting antibiotics to try to lessen the rash. Finally, I will be walking around for 48 hours every other week with a pump of 5FU attached to my body.

We expect this treatment to last for at least 3 months. We will then decide the next course of treatment (I’m hoping for another spectacular immunotherapy!)

I’m about to head into a very rough couple of months. On the good news front, I will be working with an oncologist, Dr. Thomas Semrad at UC Davis Medical Center. This will save me countless hours on the road between Davis and Stanford. Dr. Semrad is a lovely man and I just know he’ll take great care of me. In fact, when he came in to see me, he reminded me that we had met at an ACS event where I spoke. He told me that he is absolutely fascinated by my tumors since he’s never seen colon cancer act the way that it has in my body. He is excited to work with me. I’m just glad that he has taken a special interest in me!

Thank you all for your kind words and prayers. And – keep ‘em coming!!

A New Direction

I know, I know – I owe you all an update. I am so far behind in writing. I keep planning to write, but by the time that I sit down to draft something, I'm exhausted. Therefore, tonight I have promised myself that if I just write a quick update and post it, that I will plan to write a more extensive update at another time. I just need to get something out now.

In a nutshell – I’ve been dealing with tumor growth in my nether regions. The growth has made it difficult for me to stand for more than a couple of minutes and even harder for me to walk without pain. Tomorrow I will be going in for a CT scan to confirm that there is tumor growth, but there really is no doubt in anyone’s mind that this is what we will see. Furthermore, a couple of weeks ago, I went down to Stanford to get botox in my bladder to see if it would help with my incontinence. Unfortunately, although it had an 80% chance it would work, it appears that I’m in the unlucky 20%. While we were putting in the botox, the urologist looked at me to make sure that I saw what he was seeing on the screen. There was a tumor that was growing into my bladder.

With this information, Dr. Fisher is planning to have me go off of my wonderful study and reenter the chemo world. I will likely receive 2 drugs with some tough side effects. One drug will cause my face (and potentially other parts of my body) to break out in a horrible rash. The second drug is one that will go after my hair – so I’ll be restarting my fun with penguin cold caps. I have a very tough time ahead. The only plus to all of this is that they strongly believe that this chemo will shrink my tumors. Perhaps with this shrinkage, I’ll be able to walk comfortably again and may even get more than an hour of uninterrupted sleep at a time.

Because the chemo is a treatment that I can get anywhere (it’s not associated with a study), I have asked Dr. Fisher to work with UC Davis Medical Center to give me my chemo. At least I won’t be driving for hours every two weeks down to Stanford for treatment.

Hopefully, after a couple of months, I’ll be able to join another immunotherapy study and I’ll have some normalcy in my life once again.

Last weekend my family traveled down to LA to celebrate my nephew Leo’s bar mitzvah. It was a phenomenal experience. Leo was amazing and being surrounded by my relatives, many who I haven’t seen for a long time, was so nourishing. It reminded me that this is why I’m fighting so hard. So I can celebrate wonderful accomplishments with my family and friends. Next year the girls will celebrate their b’not mitzvah (a bat mitzvah for 2 girls). Cancer doesn't stand a chance against my desire to be there to celebrate with them!