5 year anniversary

This month is the 5 year anniversary of David's diagnosis. It's been a long road, bumpy at times, but we are still here!

David had his second scans since starting the new trial. The scans were good! They showed more SHRINKAGE from the scan in July and significant shrinkage since April! The clot is also dissolving. Dr. T is very pleased and is optimistic for the future, so we will just continue to trust the Dr. and more so, God!

Please continue to pray for a cure, just give up stupid Cancer!
Also pray for some mild side effects to go away!
Please pray for Ruth, Lorraine, Bobby, and Holli.

Going to watch the election results now, thank you for loving us!

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!

New plan part 1

Here is our day:

So far everything has gone smoothly.

David is in the process of the MRI. He's being a good sport. I have never had an MRI, but he said it's not that fun. I am in the 3rd or 4th waiting room of the day.

Tomorrow is the biopsy (insert anxiety here) and Dr. visit. He will get the oral medication tomorrow that he will take for 2 weeks before he starts the immunotherapy infusions. The drug for that is Opdivo. You may have seen a commercial for it. You know the one where everyone looks happy as the voice over reads the list of side effects and warnings. Yeah, that one. So that's the plan right now anyway.

Please pray for:
1. A clear scan
2. A clear plan
3. My friends battling and families of those that have lost the battle.

More tomorrow.

Thank you for loving us.

Time to move on

Thank you for all your prayers yesterday and today. I know I could feel them, and I'm sure David did too.

Funny thing about prayer. Funny in a kind of annoying way honestly. Sometime God says no. I was really praying for at least stability so we could just continue with what we know. But that's not what we got. There has been growth in several of the lung nodules and some new ones are present. Also the lymph node has grown. We saw the PA and Dr. T, they are both in emphatic agreement that we are done with the current treatment and it's time to move on. They are very encouraged that David was able to do so well on this drug and think that that will be a positive going into the next treatment.

So the new study is another trial. David will be only the 13th patient in this study. It is a combination of an approved immunotherapy drug and a new oral drug. Their thought is that David will have a great response to combining these two drugs. There is even hope of remission with this treatment. It will be more time consuming as far as trips to Houston, but weighing all the options, we think it's worth the trips. It will be every 2 weeks for maybe 2 months, then every 4 weeks. The good thing about it is that most of the appts will only be 1 day long, not overnight each time. The travel up and back in one day will be tiring but we won't be away from home as long. Got to look for the silver, right? We originally thought the infusions could be done locally, but that was if we chose only the FDA approved drug and not the study. They were very frank with us that while we could continue treatment at MDA not in a trial, that the best care and best chance of success, is under a trial.

So we press on. We won't be seeing our research nurse, Marisa anymore. We were actually her last patient, as she is now the head of all the research nurses, working in a more admin role and not directly with patients. We will miss her very much, we've spent almost 5 years with her! She said we'll see her around!

We have a new research nurse. Her name is Shedani. I think. We will love her too. Our whole team is so great, so caring, and so compassionate. They really are incredible and we know it's the best place to be. There were some tears all around today.

It was a lot to wrap our heads around today, like starting over. They told us at the beginning that this cancer would eventually find a way around the current treatment and we would have to switch. We are buying time and hoping for a cure eventually. So here we go...

Please pray for
1. A smooth transition
2. Less side effects
3. Effectiveness in slaying this dragon
4. Laura who just lost her mother and whose sister is battling.
5. Holli who continues to fight
6. Lorraine who has the best smile through it all
7. Bobby
8. an undiagnosed disease
9. Family. This is not fun for anyone

Thank you for loving us.

Here's the Skinny

Well actually, David is skinny. They thought so today. But let me back up.

David has felt awful the last few weeks. 🤢Stomach issues more than usual. He has lost a lot of weight. So I was pretty sure the scans were not going to be good. Like not good like the cancer had spread. My prayer going in was please just let there be some good news. Good news that we could identify as good news right now, not good news that you look back on years later and say that was a blessing in disguise. Immediate gratification please. Just a little please.

In November the plan was to change the medication and protocol this time because there had been a small but steady progression in a lymph node since last November. But the Dr. decided he wanted to go ahead and do another final scan. The scan showed a slight regression, that means shinkage! in the lung nodule! They cautioned us that can just be the result of the angle of the scan. But whatever! The lymph node that has slowly been increasing was...STABLE again!  So they decided to stay the course for another 3 months. The Dr. said he thinks we have tamed the disease and not to worry. Even if we do have to change course in the future he thinks David will be here for many, many years. I asked for that in writing, but he wouldn't do it. 😒
So that was very immediate good news. Thank you Jesus!

So about the skinny part. David has lost about 20 pounds since the beginning of November. But that would be great you say! For me and you maybe. Not for him, especially since he probably lost about 15 in the 3 months before November.  So they are giving him a 2 week break from the medication. Hopefully he can get his appetite back, get a grip on his stomach issues and gain some weight. 🐷

His blood pressure was way down, so he's supposed to stop his bp meds also. Maybe this will help with his fatigue!

So there's more right now good news!

Thank you for praying, please continue! 🙏

I would add this request, there are some things going on at David's work that ARE affecting his health. Without specifics, please pray for resolution! I am now convinced this has been a major reason for his stomach distress and weight loss this past 2 months, since disease progression is not the reason. Thank you Jesus again!

Please also pray for Holli, Bobby, Lorraine, and Laura's mother and sister.

Thank you for loving us! 😍