Short and sweet

David had scans yesterday and Dr appt today. He is having an infusion now.

The scans show the blood clot is dissolving and more importantly, not propagating. So he will continue on the blood thinner as planned. He will also start back on the trial oral drug, but at a lower dosage.

After today's infusion, we don't have to come back for 4 weeks! But it is a larger dosage, so pray for minimal side effects!

His next scan will be in 3 months, according to protocol of the trial. Pray for more shrinkage until then!

Thank you for your prayers always!

Here's a picture of the tree sculpture in the main lobby of the Mays building.

Thank you for loving us!

Great news!!!! But...

Since I hate when the nurse and doctors take forever to tell us about the scans, I'll just get right to it for you!

The exact words of the research nurse were, 'Your scans look amazing! We were so excited when we looked at them last night!'

So now the rest of the story.

We went to MDA yesterday morning and the scan was scheduled at 1:45. The scan actually took place about 4:30. The place was packed. Ugh. Cancer.

Then we found a great chicken fried steak at a local dive called Natachees. David wanted CFS. And if he's got an appetite, we're going to find what he wants!

Our table was ^^^ right here!

It had a South Austin kind of charm if you know what I mean. 😉 No offense South Austin!

Today started early, 7:45 bloodwork that happened about 8:15. 9:30 dr appt, that happened about 10:30.

The scans showed that some of the smaller nodules have shrunk to be not measurable and the larger ones, 2+cm, are reduced by half or more! Yippee! Thank you God for some good news today!  We haven't had news like this in years! He has been mostly stable for a long while. Which stable was good, we took that! But this! This is wow wow WOW!

Okay. Now the buzz kill. David has a blood clot in/near his spleen. This can be caused by the oral, trial medication he is taking.  So. He has to take a blood thinner for the next few weeks (and then probably as long as he takes this medication). And he has to stop the oral med until we go back. Without the stupid clot he would have graduated to once a month infusions and a scan every 3 months.  But now we go back in 2 weeks to check on the clot. Hopefully it will be dissolved, absorbed, whatever clots do, and he will go back on the trial med in conjunction with the infusion. He still got the infusion today and that should continue with the next one in 4 weeks.

So it's a setback, but we are still celebrating! Because cancer sucks and we want it gone!

So after seeing every dr and nurse and new PA and a Fellow with zero personality, we headed to the infusion, followed by an EKG that is part of the protocol but didnt get scheduled, surprise! You get to stay an hour longer today!

We were out about 4:00. Hello Houston traffic. I do love you, HOV lane!

Home about 7:30. So much happy!

Thank you for all the prayers! And thank God for these answers!

Please continue to pray that the clot goes away, the medication keeps working and minimal side effects!

Please also pray for Lorraine, who was at MDA today in the same building, on the same floor, at the same time and we didn't even see each other because the place is so stinking big!

And for Bobby and Ruth and Holli and Gloria.

Too much sickness.

Thank you for loving us!

Ugh

We just finished up with the Dr and now waiting for the infusion.

Yesterday started with a blood draw at 6:45am, followed by the last required biopsy and 3 different scans.

We were finally out at about 10:30pm. David couldn't eat anything until right before the last scan. I had some granola bars in my purse that I ate when he was not with me. (No need to torture him further).

Needless to say, we were tired and hungry at the end of it all.

Good news that we didn't have to start again today until noon. Bad news is that starting at noon means getting out, well who knows when, but later than desired.

The results of all the scans were not what we wanted to hear. We were hoping of course, always, for a miracle. For no sign of the disease. We would have been thrilled with shrinkage too. What we got was no new spots (okay that's good), but a very slight enlargement of existing spots.

WAIT!

They emphatically told us not to worry, that it is very common for patients on immunotherapy to experience 'psuedo' growth. That the tumors are actually absorbing the treatment and we could see a drastic reduction at the next scan. So he will stay on this protocol for 6 more weeks until the next scan. At that time he will have been on the treatment for 3 months and they feel that will be long enough to see if this is going to work.

They are very encouraged that David feels so well and has minimal side effects.

So we will wait and see.

So please continue to pray.
1. SHRINKAGE
2. SHRINKAGE
3. SHRINKAGE
4. SHRINKAGE
5. SHRINKAGE
6. SHRINKAGE
7. SHRINKAGE
8. SHRINKAGE
9. SHRINKAGE
10. SHRINKAGE

That should about cover it.



Thank you for loving us.

A hard days night

Today began at 2am since we decided to make this a one day trip and they scheduled David's first appt at 7am. So we left at 3am. We had no problems and arrived a stinking hour early. So we went to Whataburger for breakfast before heading in to MDA.

I am not a fan of the AM hours before about 9. Just saying.

This is the second time we've had a 7am blooddraw and he didn't get in until after 8. Grrr.

Then we waited for the Dr. The nurse called us back. She said our research nurse was not there so Dr. T would be in to see us. Knock at door and in comes a PA. She says Dr. T not there, so Zita, another PA will be in. Then knock at door and Shehanie, our research nurse comes in. Then another nurse comes and gets David for more blood because he didn't get enough at 8. While David went to do that, knock at door and Dr. T comes in.  Who's on first? Does anyone really know what time it is? Does anyone really care? 🙄

Anyway. They all agreed that all the bloodwork looked great. And we could go on to get the infusion. But wait. They ask about side effects David is experiencing? Yay no stomach issues to speak of. A slight rash that has gone away. He also mentions that his back has been aching. We have read this is one of the most common side effects. But they decide he needs an xray of his spine. Just to rule out metastisis. And they want a full bone MRI next time. So instead of going to the infusion we stop for the xray.

Then on to the infusion. They call him right back! And get everything ready. Then we wait. An hour. Because the drug is not there yet. This happened 2 weeks ago too. Where is the drug? Downstairs in the pharmacy. Ugh. Finally it comes, takes about an hour and we are out!

It's now 2pm. We are tired and hungry.

Lunch and home!

I just checked online and the xrays show no sign of metastisis. Yay! But I guess he'll still have the bone MRI anyway. We finally met the whole deductible/co-pay, so whatever is fine. Do it now before the insurance year starts again in September!

It was a good day, all things considered.
We are anxious for the scan results in two weeks, but we remain optimistic!

Please pray for clear bone scans and shrinkage/disappearance of the other stuff, no more side effects, less back pain. And a good nights sleep!

Thank you for loving us!

Infusion confusion

Yesterday was a full day that started about 7am. David had early bloodwork and then his second of 3 needle biopsies at 8am. Then we saw the study nurse and PA, as Dr. Tannir was out of town. I hope he was having fun somewhere, I can't imagine being at MDA 24/7!

The study nurse and the PA were just so excited to hear how David's first 2 weeks on the new trial med went. They said everyone has been reporting that the side effects are minimal and so much better than anything else so far. Their little faces were lit up like we were at Disney! Truth be told, David has tolerated it very well, had a rough couple of days about midway through that we've now attributed to a virus and not the drug, since it went away. Happy dance, praises!

All his bloodwork looked good too. So on to the first infusion. Which they also seem to think is about the best thing since sliced bread. They don't expect many, if any, side effects from this round but warned him of the serious ones to look out for. I'm wondering which round they do expect the side effects to happen?

The infusion was pretty easy except for the hour wait for the drug to get there. What? Where was it anyway? They said most people either feel fatigued or high energy the first 24 hours after. I wonder which David will have. Just feeling normal would be great! This is the final waiting room I waited in. I wonder about those bouncing letters? Everything at MDA is pretty orderly, never seen any thing like this. Maybe the letters are ambulatory? Maybe the drug was ambulatory? 😁

So after a day of hurry up and wait, we were back home about 7pm. We go back the end of May.

Please continue to pray for:
1. No side effects
2. No more cancer
3. Many friends, including a 4 year old named Addy whose treatment for DIPG is no longer working. Devastating prognosis.

We count our blessings.

Thank you for loving us!

New plan part 3

MRI brain scan is CLEAR!
Houston skies are clear.
Houston traffic at 5:30 is not clear.
2 out of 3 ain't bad.

Finally saw the Dr and got good news about the MRI. We have instructions and the trial medication and are on our way home after a quick bite to eat in beautiful Sealy.

Thank you for praying!

Please continue to pray for
1. Safe travels 🚗
2. No side effects 🤢
3. Total annihilation of this stupid cancer 🔫


Thank you for loving us!

New plan part 2

They just took David back for the biopsy. They said it will be about an hour.

The biopsy is only for research purposes for this new study. They want to see how the cancer has evolved and how this new regimen will effect it. He will have another biopsy in 2 weeks and then again in 6 weeks. I think that is all. He is thrilled. 😒

The Drs appt is at 3. Hopefully. We might be out of here just in time for Houston 5 o'clock traffic. Yay!

If all goes as planned, he will start the trial drug orally tomorrow and add the Opdivo infusions every two weeks, starting in two weeks.

More later.

Thank you for your prayers.
Thank you for loving us!