Underwhelming

The report from David's most recent scan is in and at best he is stable. The Dr said they have 2 markers they measure by and by one there is slight shrinkage and by the other there could be slight growth. Then he follows that up with immunotherapy can cause nodes to become inflamed and then they can shrink. But as long as he is tolerating this treatment he can stay in this trial. 

So that's the long and short of it. I didn't ask any questions. I feel a bit of a cultural rift with this Dr and I don't think he wants the wife to ask questions. He cuts me off when I talk. Very annoying. So I'll have to talk to David and let him ask questions next time if he wants to. Mainly I don't want them to let this grow another 20%, calling it stable, just because he's tolerating the trial. 

Anyway. I am tired of cancer. I know David is too. And lots of other people too. Ugh.

So please pray for:

SHRINKAGE, no side effects, Bryon, Rob, Mark, Ruth, RJ, and Nancy. And maybe a big ole heaping plateful of good news! And probably my attitude.

Also I read blogs should always include pictures. Here's a pic of the super ugly furniture in this waiting area!

Maybe it's trying to be both cheerful and sterile?

Thank you for loving us!

No Glitches!

Hey all!

We just got back from 2 fun filled days in the downtown Houston hospital district. What a great vacation spot!

Seriously, thankfully David made it through bloodtests, biopsies and infusions (oh my) without any glitches, oversights or cancelations! Yay and thank you Jesus! 

It was a long 2 days, so glad to be home!

I'm not sure what the schedule is but I think he has to go back once a week for 4 weeks then it will be every 2 weeks for the infusion and then the extra shots every 4 weeks.  I'm uncertain, but something like that!

Thank you so much for your prayers since the last post! Please continue to pray for:

-no negative reaction to the treatments.          -no side effects from the treatment.                  -cancer to go away!

Thank you for loving us!

A Series of Unfortunate Events

I pinky promised I would update about the new trial, so here it is.

You may remember from the last post my prayer request included a trial that would require fewer trips to Houston, the one he just came off of was every 3 weeks. Well the one they picked is every 2 weeks. So we had some questions. After much discussion we consented and new appointments to begin were scheduled. 

Then David got covid. He had a pretty mild case and we are so thankful for that. The new trial had to be postponed for 20 days and everything was rescheduled for this week. 

Like the last few trials, this one requires a needle biopsy as a primary marker. They require a negative covid test to do a biopsy. The test must be done there 24 hours before the biopsy. This required us to both take an extra day off and spend an extra night in a hotel. The trial nurse did try to get them to let him do the test at home and send the results. That was a no go. So like most everything else about cancer, we didn't have a choice and went went to Houston on Wednesday for the test.

Wednesday morning at 10 I dropped him off thinking he would run in and be back out shortly. I went to find a free parking lot to save a few dollars and wait until he called to come back and pick him up. After about 20 minutes he says they are saying since he just had covid he doesn't need a test and they are trying to confirm that. This is not exactly happy news as we left our house at 7am and traveled for 3 hours and will have to stay in Houston an extra night for nothing. There are no other tests or appointments schedule until Thursday. The bearer of bad news comes back and says, no test needed. David says since I'm here do you just want to do the test anyway. They tell him if they do the test and it happens to come back positive then he won't be able to have the biopsy so he just shouldn't do it. 🙄 I don't know, come here a day early because you have to have a negative test 24 hours before, but if you might get a positive test because you've had covid then don't take the test. Think on that until your brain hurts.

Thursday morning we head back to MDAnderson. He has blood work, an echo and electro cardiogram, and then the biopsy.

We make it to the biopsy stage. And they say there is a problem with the blood work and they can't do the biopsy. That's all they can say but the trial nurse will call and the Dr will still see you Friday morning. What?  

The trial nurse calls and can't really say anything medical. That's helpful. Everything will have to be rescheduled. Including the scans, that he had about a month ago but are now out of date because of the covid delay. So even if the blood work and biopsy had gone as planned the trial would have been delayed because of out of date scans. 😐 So she's working on scheduling. 

Friday morning they schedule another bloodtest. 

All test results are eventually on David's online chart that we can see. Most of the time they aren't posted until after we see the Dr. But these were so I'm looking because you know I'm a doctor and can decipher those medical tests. 

They run a whole plethora of things on his blood but the extra test was only on one thing. And it is in normal range. So I go back to the test from yesterday because I am also a Detective, and that one item was way high. I then have to consult with Dr. Google to see what that one thing even is. It has to do with blood coagulation. So I determine that they couldn't do the biopsy because his blood was too thin, not coagulating properly. But now it is. 

Finally at the Dr's appointment, the nurse comes in and says all his test look good. The PA comes in and says all his test look good, the new test from that morning was good. And she has questions about the blood draw from yesterday. Did they draw blood from a port? He doesn't have one, so no, from a vein in arm. Hmm. The Dr comes in and says the test look good and did they draw blood from a port yesterday. 

Is there an echo in here?

No he doesn't have a port, from a vein in arm. Dr asks did they use heparin to clear the line? What are we, doctors? 😉 We don't know that. He says sometime they do that to get the blood flowing when they have to draw a lot of blood and it could have caused the elevated level of that test. But it's all fine now, so reschedule everything. Great. 

David is scheduled to begin the new trial in a couple of weeks. Again.

This trial will be a double immunotherapy trial including an infusion every 2 weeks and an under the skin injection every 4 weeks. I think. There won't be any pills to take at home or any diary to keep. 

This is a phase one trial, but they have already determined the best dosage and have seen positive results with his type of cancer.

Why this all happened to get to the same place is beyond me, that's just how things go in this world I guess. 

Please pray for a smooth transition into this next trial and for a marked decrease in that resistant and persistent node.

Thank you for reading this much.

Thank you for loving us! ❤️ 

Another trial bites the dust

I was last heard from in October 2020. Wow, where does the time go?

I pray you are doing well as we enter another politically charged, covid filled year. But that's for another blog.

David began a new trial in November 2020, it never had great results, but the disease remained 'stable' so they stuck with it. I should clarify that the disease can be progressing and until it has progressed 20% they call it stable. 🤔 

So, that is actually what it has been doing this past 13 or so months. There has been no new growth and it is only one node that is the thriving culprit. Today, finally, after giving the treatment one more chance (2 more times), they discontinued this trial. 

Now we wait for the doctors to confer and come up with the next plan. Don't worry said the doctor, we have lots of trials. Okay, I guess we won't worry until they say they are fresh out of trials!

We should know something in the next week and I pinky promise to update you here! In the meantime, please pray: 

-for a new trial that requires fewer trips to Houston (this one was every 3 weeks 🥵)

-for a new trial that produces shrinkage (this one never did 😠)

-for a new trial with no, or mild side effects (this one was good 😇)

-for a new trial that beats this stupid cancer (we just marked 8 years in this battle. 🤮)

Thank you for praying. 🙏

Thank you for loving us! ❤

Hi! Remember me?

Well it's been almost 9 months since my last post. I don't have to tell you a lot has happened since then. But here is what's happening with David. In March, MDA stopped allowing visitors into the hospital, only patients, because of stupid covid. So I stopped coming to the monthly check-ins and only come to the quarterly scans since they are overnight. I just stay in the hotel until he finishes everything and we head home. 

At the last scans in September, they told him that one spot is having progression and has been for about a year. Even though they call the disease stable. When the progression reaches 20% they would pull him out of this study and look at other options. So that is what happened today.

They talked about 2 new trials that they think David will be eligible for. One is for the immunotherapy drug Keytruda with a trial chemo drug. The drug would be taken daily and the Keytruda would be administered as an infusion every 3 weeks. This is much like what he has been doing with Opdivo. The other trial is for T-cell replacement. It would require about a month long hospital stay, but could  offer a long term remission or cure. David told them to be aggressive. They gave him 2 weeks off of everything and will let him know which study is available the soonest.

Of course we are a little discouraged, this treatment has been the easiest and most successful of all, by far. But we are also hopeful that the next treatment could offer long term success. The PA reminded him that he has been on this treatment for about 2 and a half years and really it's just the one spot that is growing. Also even though it has progressed, the treatment overall greatly reduced the cancer and it is now much less than it was 2 and a half years ago.

So that's where we are now and we should know more in the next couple of weeks. 

Please pray that the way is clear for the best treatment option going forward. I will update when we find out what that is.

Thank you for loving us.

World Cancer Day

World Cancer Day. That's seems aptly named because from the crowds at MDA today, everyone in the world must have cancer. And also, cancer stinks.

On the way over here yesterday afternoon the AC in my car decided not to work. It has been doing this on and off for a few months. It will start again as suddenly as it stops. I have taken it in to be looked at but it works whenever I take it or try to take it. It worked again last night after David's scan. It worked this morning. I hope it works on the way home! I have about 2000 miles left on the warranty. 🙄

What does this have to do with anything you ask? Nothing really but it is a little like David's treatment I guess. His scan showed stability and no new tumors. So that is great. But there was a tiny bit of growth in one of the nodes. Like 1 mm of growth. So it's working except when it's not? He will continue on this trial for another 3 months and if there is more growth at the next scan (May) he may change treatments. The Dr. says there are many options. He always says that and he hasn't lied yet. So we press on.

So today on World Cancer Day, his cancer is trying to make a comeback? Someone explain to cancer that is not the purpose of this honorary day. Today I claim that World Cancer Day is not just a day to bring awareness of cancer but is a day to celebrate the defeat of the monster.

Please pray with me that the infusion he is receiving now goes directly to that annoying node and zaps it to smithereens! 💥

A young couple just walked by me and she was sobbing. She was making a beeline for the elevator. If only it was an escape. Pray for her. It's really hard to keep it together here sometime. Most of the time.

Also. SOMEONE IS IN MY CHAIR! I come from a long heritage of Baptists. Claiming a particular chair is a real thing. They aren't just sitting there either, they are camped out in that corner. She looks like she doesn't feel well. Maybe she needs the space more than me today.

Please pray for:
Node zapping
Comfort for the elevator lady
Healing for the chair stealer
Appropriate and timely AC functioning
World Cancer Day and all that might entail

Thank you for loving us! ♥️

No change

We arrived yesterday afternoon for a protocol blood draw, which means it had to be a fasting draw. After that we checked in for scans at 7, actual scans at 9. They were at least running on time and we finished about 9:30.

In the meantime, the hotel called and because several of their guests were staying another night, our room was not available. They made arrangements at another hotel and picked up the tab. So it was ok.

Dr visit this morning, everything is stable. Since David started this trial there has been an over 50% reduction of nodules and no new growth. News we are thankful for! But I would love to hear NED someday!

He's having the infusion now and I'm waiting in my private waiting area. Only one other person in here now. The local news is on. I am extremely thankful 'The View' is over! 🤮

So we should be out of here soon!

David won't have scans again until after the new year so here's wishing you all a happy Thanksgiving and a very Merry Christmas. I can't believe this season is already upon us!

Please pray:
1. for this cancer to give up. Or more treatments that can kill it.
2. Continuing good health overall and tolerance to treatment.
3. Bobby, Edward, Lorraine, Holli, Nikki and so many others fighting with cancer.

Thank you for loving us!