Changes

It's been a while with not really any news, but that's changed now!

David went off the last trial about 4 weeks ago. It never really offered anything positive in the way of shrinkage of the node. But it has had a horrible side effect that we pray goes away at some point. He itches all the time. With these treatments, side effects can start at any time, even after a treatment has been discontinued. And they can continue indefinitely too. Ugh. They have prescribed eczema meds and he uses OTC allergy meds and itch spray and creams as well. Nothing really helps. There isn't a rash. Just itching. 😳 

So what next? MDAnderson does not have a trial that he is qualified for right now, so they put him on 2 medications that are the current standard of care. If a trial opens for him in the future, they'll let him know. We were told by the first trial nurse that MDA will provide standard care, but they are a research hospital and we would receive the best care if participating in trials. We have already experienced this. They just aren't as interested in his case. He has never only received the standard of care, he started with trials right after his diagnosis 9 years ago. So maybe it will work for a while?!

We also had a scary week here!

My father had a trip to the ER after a fall, I spent most of Tuesday night in the ER with him and my mom. He's better, was released on Friday and went to the Bobcat football game Saturday!

Wednesday evening, David experienced an extreme loss of balance and was very shaky. He finally decided he needed to go to the emergency room early Thursday morning. 

We got there about 6am. Their first thought was that he had had a stroke. He was confused, disoriented and slurring his speech. 

They scheduled a brain scan. And he had a zoom consult with a neurologist. There was also concern the cancer had spread to his brain.

They did blood work and started him on fluids.

His bloodwork returned a glucose level of nearly 600! He had been lethargic and had no appetite for a week or so, but with the cancer treatments and previous low glucose levels we did not even think about diabetes! It is no small miracle that he didn't have worse complications with a blood sugar level that high! Praise God!

Well, his brain and spine CT scan and his brain MRI came back clear. Praise God again! No stroke and no cancer there! After over 8 hours in the ER, he was admitted to th PCU.

So now he has diabetes. Ugh. His glucose at MDA at the end of September was 111. This came out of nowhere. I guess it could be a side effect of all the immunotherapies. 🤷‍♀️

After they got him hydrated and insulin-ed up he was feeling much better. Like MUCH better. Energy, appetite back to normal. Yay!

He left the hospital Saturday afternoon with an insulin prescription and not enough intructions. But we figured it out!

Now along with insulin, he has started the new cancer treatment. We have no idea how he will react to it. The lists of side effects are a mile long!

Please pray for:

*No side effects from the new cancer drugs.

*The drugs to shrink the cancer!

*The itching to stop!

*The diabetes to be controlled.

*God's protection and provision for our family.

*Our friends coping with their own health and cancer battles!

That's about it, and that's quite enough!

Thank you for reading all this and for loving us! ❤️ 

One more round

David's scans showed a small amount of growth in that one lymph node. But they are still calling it stable. We did express frustration with how they categorize stable. Dr. said that's just how they do trials. They want him to do this treatment one more round, idk how many more infusions that is until the next scan. But at the next scan if there is more growth they will look at other options. I asked about surgery but this node seems to be in too complex of an area. They mentioned that radiation might be possible. He has never had that. 

Anyway. It's been a while since there has actually been really good news here and we could use some. So if you are praying, please pray that the node starts responding to the therapy today (and for the next several weeks, he has infusions every 2 weeks) and shrinks!

We saw our friends Kathy and Dora here today, add them to your prayers. And Bryon, Rob, Bill and Ruth.

On the lighter side, I just overheard a tech ask a patient, 'been waiting long?' The patient answered 3-4 hours and the tech replied, 'oh wow!'. She must be new! 😂

Thank you for loving us!

Happy Father's Day, Dads!

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! ❤