Dr Awkward vs. cancer - let's show our support!

Its been a while! I always mean to update and then well, life happens!

So the aggressive chemo Doc was doing wasn't working, so we met with a clinical trial doctor at Yale. This doctor was awesome and said he had a great fitting clinical trial for Doc to participate in.

Long story short, Doc was offer a slot in this clinical trial. It is a very small cohort, and this trial has only 125 slots in the whole world, with 7 countries participating...3 of them were at Yale and Doc got one!

It is an immunotherapy trial, which has not been useful in colon cancer in the past because it is such a clean cancer, usually made up of one single clean cell, rather than multiple cells like brain cancer often is or breast cancer. The end goal is to make the body recognize it has cancer and fight it off.
Your text to link here...

The link above is some info about it.

Otherwise, we are just doing all the preliminary testing for this trial, which is a LOT (blood work, rheumatologist, Ct scan, brain MRI, EKG, PET Scan, biopsy). A problem with Docs port has been discovered and he need to go in to get that fixed.

Doc has unfortunately had to stop working, and that has been the largest change in our household. He was simply too sick to continue, so he is now home each day. Our twin 6 year old boys are digging spending all their time with daddy, while mommy now goes to work part time. Its a huge role reversal and has had some difficulties adjusting to all around as well.

Doc is a veteran and we are in the process of seeing if there is a tie in from his time in service and in Qatar with Dessert Storm to his cancer, as it isn't genetic , and there have been studies that show there is a distinct correlation between chemical exposure and cancer during Dessert Storm war. So we shall see what comes of that as well.

And lastly, the bright light at the moment is that our family was granted a family vacation to Disney World by an organization that grants gifts of moments to families that have a parent fighting a potential life threatening disease. We had no idea such an organization existed, but our social worker at the cancer hospital submitted us and we were granted it, so we leave for Disney on September 10th! One glorious week of Doc and I and our three kids will be amazing.

Doc can probably chime in more about how he has been feeling physically, but its a huge improvement not being on the chemo vs being on it. To start the clinical trial he had to be off chemo for at least 28 days, and so he has been...

That Disney trip sounds great! Have a wonderful time!

I'm so happy to hear that you are going on a combination immunotherapy study! Yale is a great place, they are very experienced in these types of treatments.

Now just for a little hope, this is a video of a patient that I treated with very advanced, end stage colon cancer. I am the Doc Joe being interviewed in the video. Punchline - so far happy ending, the patient remains cancer free now going on 2 years after participating in a combination immunotherapy trial that I was running and the hope is that he is cured.

And since I have no idea how to embed videos, here is the YouTube link:


Wow, I'd be signing up for all the trials across the country in the hopes of getting in!

Very good news, Missy, head up and charge forward! Enjoy WDW!

Time for an update.

The trial was supposed to have started last week but had to be postponed. One of my blood labs (INR) came back too high and because if the treatment doesn't start within 28 days of signing the consent form I could have lost my slot. My doctor really went to bat for me though and worked with the hosts of the trial and was able to reserve my spot for another week. So after some more scans last week and taking a bunch of vitamin K to get my clotting factor within range I was able to have my first treatment yesterday.

The process was similar to a chemo treatment although in my case there was a lot more nausea and vomiting after the meds. They kept me overnight for observation but didn't see any issues.

Today I've been feeling a little rough. Lots of flu-like symptoms but it still beats the chemo side effects.

We're really hoping for good results. It'll probably be a month or 6 weeks before the next scan to see if we're making any headway. Wish us luck and of course thank you all again for the support you've given. It means a lot.

Keep taking good care of yourself.

Best of luck, Doc, and I hope you guys enjoy Disney World!

Good fortunes, Doc. Thank you for the update, as you have been on my mind.

Good to hear from you and wishing you luck and all the skill your team can provide you.

Happy to hear that it's started. Good luck!

Best of luck to you guys. Hang in there Doc. And cherish all those precious moments.

Sending all the good thoughts your way Dr_Awkward. Stay strong!

Keep on fighting, Doc. Thanks for checking in, too. We're all rooting for you here.

Keep kicking ass, Doc! Hope the trial does the trick!

Glad you're in the trial. Sending encouragement to you and your family!

We're rooting for you, Doctor A!! Sending you thoughts and good vibes.

Wishing good health and effectiveness to your body.

Hey Doc, I hope the boys are looking forward to the trip.

I'm hoping to hear good news soon from the new treatment.

Best of luck to you Doc. My wife had cancer two years ago, we beat it, and she's doing fine. You'll get through this. Hang in there!

Very glad to hear your wife made it through OK tanstaafl.

Thank you all very much for the continued well wishes and support. We will know how things are progressing with the new treatment in another month or so when they run further CAT and PET scans.

Treatment is weekly with the immunotherapy drug along with an additional drug 'Atezo' every third week. It turns out that this trial med really does give you super powers. They include but are not limited to:

* Gain the voice of a chain smoker, along with croaking like a frog occasionally when speaking.
* Ability to cough more than everyone else in the house combined.
* 100% immunity to hunger!
* Like magic it makes all food taste and feel like a big spoonful of Crisco and ear wax.
* Super sensitivity to pressure and temperature in hands and feet.
* Ability to shed skin on palms and soles. (gross warning)

In all seriousness, on the doctor's advice I skipped treatment last week in order to get the side effects under control and I am feeling much more like myself this week. Food is going down easier and I got most of my voice back, even enjoying some Overwatch and Rocket League with the regulars in the past few days.

Back to regularly scheduled treatments on Tuesday. I'll keep you guys posted with any significant updates.

Thanks for swinging by, Dr A! We're all rooting for you.

Dr_Awkward wrote:

* Gain the voice of a chain smoker, along with croaking like a frog occasionally when speaking.
* Ability to cough more than everyone else in the house combined.
* 100% immunity to hunger!
* Like magic it makes all food taste and feel like a big spoonful of Crisco and ear wax.
* Super sensitivity to pressure and temperature in hands and feet.
* Ability to shed skin on palms and soles. (gross warning)

Whoa. Guess you're not in the "immunotherapy is almost like not being on anything at all" group. Hopefully it's kicking your cancer's ass though and not just shedding your skin.

That's a bummer you are having so many side effects Doc, hopefully it's making the cancer feel even worse!

Do you mind if I ask what drug they are using in combination with atezolizumab?

The trial drug does not have a name yet, just a string of letters and numbers. It begins with R0 so whenever the medical staff references it they just call it "R0". I'll dig up the link for the specific trial and post it soon.

One side effect that I did not mention is that since my last treatment two weeks ago I've felt consistent pain in my right side and shoulder. It feels very similar to the pain I felt the day after having one of the sites in the liver biopsied a few weeks ago. No reason for my shoulder to hurt so I'm guessing that it may just be pain radiating up from the liver area. I am very cautiously optimistic that this discomfort stems from inflammation caused by my immune system attacking the mets but time will tell.

That sounds like liver capsule pain which certainly could be from an inflammatory response. Fingers crossed!

Hey DocAwk - I am so sorry to hear about the cancer as well as how crappy the drugs are making you feel. I've been meaning to catch up on this thread and donate for a long time, and finally I have. I also shared the GoFundMe on Facebook. I've personally hated Facebook for a long time (I don't care what everyone had for breakfast, you know?), but this week I'm learning about its power to get the word out to a large number of people.

Back in the day when I really made an effort in every tagging thread, I considered you my friendly tagging nemesis. I've come up with a few that I'm really proud of, but you always outpaced me and seemed to come up with great ideas! Stay positive and stay creative!

More bad news this week. CT and PET scans on Monday show significant tumor growth in the liver.
We were expecting some increase in size due to the inflammation caused by the immune system response, but that can't account for the changes we've seen.
The larger met went from 5cm to 8cm. Two of the smaller ones grew together into one larger tumor.

The trial doc thinks that there still might be some benefit from the atezolizumab so we're staying in the trial for the time being, but if we want to explore other Phase I trials it may involve me being off the current regimen for a month before I'm eligible.

We have an appointment with a radiologist on Monday but I'm afraid any radiation therapy is going to be sort of a stop gap measure at best. There is just too much mass in the liver to treat it all. They'll likely be targeting one or two of the larger masses to ease the pressure and pain they've been causing which has ramped up quite a bit in the last couple of weeks.

As always, my thanks to you wonderful Goodjers for the support and well wishes.

Keep truckin', Doc. Wishing you the best. It shows resolve to share what you're going through so lean into that as much as you care to.

Damn. Keep on keeping on. Truly glad there are multiple options for you!