It's been over a week since David has started the drug therapy and I am so happy to say that he has not experienced any side effects.
Praises and Praises!
They said many have very few side effects, and some have some so slight they don't bother them. But they also said they can start at any time and sometimes don't start until the second cycle.
We are just prayerful that he is in the group with none or only slight side effects!
It is a little stressful waiting and wondering everyday if 'this will be the day'. But we try not to stress about it too much.
Please continue to pray:
1. No or minimal side effects
2. Nodules in lungs shrinking
3. No spreading anywhere else
While it's good not to have an appointment for 6 weeks, it's also hard waiting to see if we are going in the right direction!
Thank you for praying!
Thursday, February 27, 2014
Tuesday, February 18, 2014
No place like home
Thank you for praying. Today was a good day. The blood collection, was for white blood cells, not platelets. And idk what a platelet even is actually. I'm not a doctor, I just play one on TV. :)
Anyway, since all this started we have found out that David doesn't have the easiest veins to find. Today was no different. But thankfully the nurse was really good and able to start the IV's on the first try. It took about 3 hours to draw the blood, extract the white blood cells and replace the blood. That was about 3 episodes of Criminal Minds on the TV in the room. So that was all good. The technician did say sometimes for whatever reason they have to repeat this procedure for the lab. Let's pray not.
Then we had some lunch and sat outside in the beautiful weather.
The appointment with the Oncologist was scheduled for 2:30. The 'on time' board outside the office said the wait time was less than 30 minutes. You might think that means we would see him no later than 3. Silly. No. So I really don't know what it means except maybe someone should change the sign.
We went into the office/exam room about 3:30. Talked with the nurse about general stuff like do you have any pain and what meds are you taking?
Then we waited. The chairs outside the office are better than the ones in the exam room btw.
The research nurse came in about 4. We had a good visit with her. She explained everything about the protocols and procedures as well as the drug and possible side effects. And we asked lots of questions.
David will take the drug everyday for 4 weeks. Then take 2 weeks off. Then we go back to MDA to get the first vaccine and begin the cycle again. If he has problems tolerating the drug we can call for help or advice. It is possible that they alter the dose or time off if needed. The main side effect is usually gastrointestinal. And fatigue.
Dr. T came in about 4:30. He told us an abbreviated version of everything the nurse, Marisa, told us. And okay, bye. Maybe less than 30 minutes is the actual time you will spend with the doctor? It's fine. We like him. But we really like Marisa!
By now it is well into Houston rush hour. It was what you would expect. How do people do that on a daily basis?
We made it safely home about 10:00 pm.
Please pray for:
1. Minimal side effects/no drug complications
2. No further white blood cell collection needed
3. No spreading of cancer. Shrinkage!!!
Thank you, thank you, thank you for your prayers, notes, hugs and love!
Monday, February 17, 2014
Back again
We are back in Houston ready for tomorrow.
David's first appointment for the platelet collection is at 8:30. It is a 4 hour procedure.
Then we see the Dr. for instructions on beginning the targeted drug therapy.
Hopefully we will be on the way home by 3-3:30.
Please pray:
1. On time appointments
2. No complications with platelet collection
3. NO or VERY MILD side effects from targeted therapy drug
4. Safe travel home BEFORE Houston evening traffic!
5. No complications from drug therapy.
If all goes well we don't have to come back here for 6 weeks!
Thank you for praying!
David's first appointment for the platelet collection is at 8:30. It is a 4 hour procedure.
Then we see the Dr. for instructions on beginning the targeted drug therapy.
Hopefully we will be on the way home by 3-3:30.
Please pray:
1. On time appointments
2. No complications with platelet collection
3. NO or VERY MILD side effects from targeted therapy drug
4. Safe travel home BEFORE Houston evening traffic!
5. No complications from drug therapy.
If all goes well we don't have to come back here for 6 weeks!
Thank you for praying!
Thursday, February 13, 2014
YIPPEE!
Here's the latest and it's good!
I found out today, that we have not met our out-of-pocket expense yet. It is impossible to believe, but as of today, with everything that has cleared the insurance company, we are still about $2000 away. His total out-of-pocket, (deductible + 20% until max) is $6250.
As soon as he meets the total, EVERYTHING IS COVERED 100%!!!
This includes the prescription! YEA!
Anyway, did I mention, as soon as he meets the total, EVERYTHING IS COVERED 100%!!!
Until September 1, when it all starts over. But still! EVERYTHING IS COVERED 100%!!!
None of the procedures he had on Monday and Tuesday have been applied yet, so maybe once those come in, he will be at the point where EVERYTHING IS COVERED 100%!!!
We do have to pay the $6250, but not an additional $2400 a month for the prescription!
The nurse who called to find out about the coverage just asked how much it would be. So they told her based on the 80/20 co pay we are still under. Nobody bothered to ask or answer, after he meets the out-of-pocket, EVERYTHING IS COVERED 100%!!!
So hooray and hallelujah! I thought you might want to know! Thank you for praying!
I found out today, that we have not met our out-of-pocket expense yet. It is impossible to believe, but as of today, with everything that has cleared the insurance company, we are still about $2000 away. His total out-of-pocket, (deductible + 20% until max) is $6250.
As soon as he meets the total, EVERYTHING IS COVERED 100%!!!
This includes the prescription! YEA!
Anyway, did I mention, as soon as he meets the total, EVERYTHING IS COVERED 100%!!!
Until September 1, when it all starts over. But still! EVERYTHING IS COVERED 100%!!!
None of the procedures he had on Monday and Tuesday have been applied yet, so maybe once those come in, he will be at the point where EVERYTHING IS COVERED 100%!!!
We do have to pay the $6250, but not an additional $2400 a month for the prescription!
The nurse who called to find out about the coverage just asked how much it would be. So they told her based on the 80/20 co pay we are still under. Nobody bothered to ask or answer, after he meets the out-of-pocket, EVERYTHING IS COVERED 100%!!!
So hooray and hallelujah! I thought you might want to know! Thank you for praying!
Wednesday, February 12, 2014
Good news, expected news
First the good news! David received a call this morning and he has been accepted into the study and he was also randomized to be in the vaccine group! This means he will receive the vaccine in addition to the drug, Sutent. My understanding of the vaccine benefit is that it doubles the positive effects of the drug.
So on Tuesday when we go back to MDA, he will have to have a 4 hour procedure where they extract platelets from his blood to add to the vaccine they are making out of the tumor, which they already have. This is not a painful procedure, he can take a nap.
So this is super great news!
The expected news is that, so far we have not qualified for 2 of the 4 drug assistance programs that are available. One was already fully allocated for the cancer David has, the other, we are too rich. Ha Ha Ha. For the 2 remaining programs, I have to submit applications and a stack of documents for them to check for eligibility. So I am working on that. We have good insurance with a good prescription plan, but 20% of a $10,000+ a month drug is still a lot of money.
That's all I have now.
Thanks for continuing to pray!
So on Tuesday when we go back to MDA, he will have to have a 4 hour procedure where they extract platelets from his blood to add to the vaccine they are making out of the tumor, which they already have. This is not a painful procedure, he can take a nap.
So this is super great news!
The expected news is that, so far we have not qualified for 2 of the 4 drug assistance programs that are available. One was already fully allocated for the cancer David has, the other, we are too rich. Ha Ha Ha. For the 2 remaining programs, I have to submit applications and a stack of documents for them to check for eligibility. So I am working on that. We have good insurance with a good prescription plan, but 20% of a $10,000+ a month drug is still a lot of money.
That's all I have now.
Thanks for continuing to pray!
Tuesday, February 11, 2014
Remains of the day.
It's 10:30 pm and we are finally home. Remember yesterday. It was like 10 years ago. But we finished all the appointments about 2 hours early. We more than paid that back today.
It started out innocently enough. David had an EKG first thing. Got there early, finished early. Went on over to the next appointment, which was the bone scan. He got called back early. Things are looking good. But then he came back out too soon. Seems they scheduled the bone scan too close to the heart scan yesterday. They were concerned the contrast dyes would conflict with each other. So he had to go back at 1 to get the dye and then go back at 3 for the scan. In the middle we had the appointment with the oncologist.
Here's all the news from Dr. T.
The brain scan was clear. Yea. The heart scan was good. Yea. The CAP CT showed no new cancer. Yea. But the lung nodules are still there. Boo. The news is all basically good. We are right where we were before surgery except minus a tumor and a kidney.
Depending on the results of some lab work which they should get back tomorrow, David is eligible for the clinical trial. If all is good they will do the random draw and let us know tomorrow.
Regardless of if he gets in the vaccine group, we go back on Tuesday to begin the other drug, Sutent. Here is the bad part. These drugs are expensive. Outrageous. Our cost, after insurance is almost $2400. A month. Who can do that? So now I have to call these co pay places and see if we qualify for assistance. I don't know what happens if not. So pray we qualify!
I learned about this while David went for the bone scan.
We left the hospital about 5 o'clock. Downtown Houston. 5:00 pm. Not the best plan. Thankfully when it was raining it wasn't freezing and when it was freezing it was dry. And we made it home safely. Just a quick 5 hours later.
The rest of the story is this. These drugs will hopefully shrink the tumors. They will not cure this cancer. They told us from now on, no progression is considered good news. They will use this drug as long as it works. It might be months, it might be years. If/when there is progression, they will switch to another drug. Currently there are, I think, 4 they can use. At some point they can also switch back to the Sutent. We just hang on. Maybe down the road they have more options. I wish it was different, but it could be worse. This is reality. I had a 'this really sucks' cry on the way home. Tomorrow we will get up and move forward. We don't have any other choices.
Please pray for:
1. All clear to be in the study
2. Vaccine group
3. Major funding for the drug
4. Mild to ZERO side effects from the drug
Finally, I am not brave, strong or optimistic. But I must be an excellent actress. I have faith, hope and joy. Please keep us in your prayers. We are trying to hold it all together. And if Jesus comes in the morning, I am really good with that!
Thank you for praying and for loving us.
It started out innocently enough. David had an EKG first thing. Got there early, finished early. Went on over to the next appointment, which was the bone scan. He got called back early. Things are looking good. But then he came back out too soon. Seems they scheduled the bone scan too close to the heart scan yesterday. They were concerned the contrast dyes would conflict with each other. So he had to go back at 1 to get the dye and then go back at 3 for the scan. In the middle we had the appointment with the oncologist.
Here's all the news from Dr. T.
The brain scan was clear. Yea. The heart scan was good. Yea. The CAP CT showed no new cancer. Yea. But the lung nodules are still there. Boo. The news is all basically good. We are right where we were before surgery except minus a tumor and a kidney.
Depending on the results of some lab work which they should get back tomorrow, David is eligible for the clinical trial. If all is good they will do the random draw and let us know tomorrow.
Regardless of if he gets in the vaccine group, we go back on Tuesday to begin the other drug, Sutent. Here is the bad part. These drugs are expensive. Outrageous. Our cost, after insurance is almost $2400. A month. Who can do that? So now I have to call these co pay places and see if we qualify for assistance. I don't know what happens if not. So pray we qualify!
I learned about this while David went for the bone scan.
We left the hospital about 5 o'clock. Downtown Houston. 5:00 pm. Not the best plan. Thankfully when it was raining it wasn't freezing and when it was freezing it was dry. And we made it home safely. Just a quick 5 hours later.
The rest of the story is this. These drugs will hopefully shrink the tumors. They will not cure this cancer. They told us from now on, no progression is considered good news. They will use this drug as long as it works. It might be months, it might be years. If/when there is progression, they will switch to another drug. Currently there are, I think, 4 they can use. At some point they can also switch back to the Sutent. We just hang on. Maybe down the road they have more options. I wish it was different, but it could be worse. This is reality. I had a 'this really sucks' cry on the way home. Tomorrow we will get up and move forward. We don't have any other choices.
Please pray for:
1. All clear to be in the study
2. Vaccine group
3. Major funding for the drug
4. Mild to ZERO side effects from the drug
Finally, I am not brave, strong or optimistic. But I must be an excellent actress. I have faith, hope and joy. Please keep us in your prayers. We are trying to hold it all together. And if Jesus comes in the morning, I am really good with that!
Thank you for praying and for loving us.
Monday, February 10, 2014
Old MacDonald
What a day!
We started at 10 this morning. I'm thankful the 8 am appointment was changed to tomorrow! We met first with Dr. Karam, the surgeon. They are happy with David's recovery but want him to not lose any more weight. He has lost about 25 pounds since pre-surgery. He promised to do better. Ensure will be added to his diet this week.
We also got a copy of the surgery report. The report confirmed the cancer is the clear cell, the most common type of kidney cancer. This allows David to participate in the trial. Also the adrenal gland and the lymph nodes (2) that were removed were cancer free. The vein that was repaired showed clear margins. So the whole surgery was a good success! Praises!
David realized tonight that he probably won't see Dr. K again and was sorry he didn't give him a big ole bro hug. Maybe we'll send him a note and invite him to come ride horses if he's ever in SM! They had a running horse riding joke since the first appointment.
After that we met with the research nurse/person, I really don't know her title. All the scans the rest of the day are to establish a baseline for the treatment which is also connected to research since we are eligible for the trial. They will have all the scan results by Wednesday. She is also checking with David's insurance to see about his prescription coverage. The drug he will be taking is quite expensive. Cha-ching. OUCH! If his insurance doesn't cover it (like A LOT of it!), she has options like the drug company will cover it or there are other grants. So as soon as they see the scans and figure out how to finance the drugs, they will do the trial randomization. 2/3 of patients will also receive the vaccine.
Also, about the drug, Sutent is the name. We are understanding that fatigue is a major side effect. David wasn't happy about that, since he is just getting his energy back. Pray it won't be too bad. Other common side effects are gastrointestinal junk, mouth sensitivites, and some kind of hand/foot sensitivities. Of course there is a page a mile long (kind of like this post), but these are the most common.
So next week, if they are happy with the scans, we have to come back for 1 day to get the drugs. David will take one dose a day for 6 weeks. At that time, if he gets in the vaccine group, he would come back for the first vaccine. Then back every 3 weeks for another vaccine. The amount of time between vaccines become longer over time. The vaccine is free because it is part of the study. Pray for vaccine. We should know this week if he gets it.
Long story, longer. There will be more scans along the way.
Next David had a blood draw. One of the results was that his Creatitine level is still not quite where they want it to be, but it is better. It was 2. something. It was 5. something in the hospital. They want it to be 1.5ish. They told him to drink more water and some cranberry juice.
Next he had scans. Here a scan, there a scan.
E I E I O.
Cardiac scan, CAP CT (chest, abdomen, pelvic), and brain MRI. Yea! We finished about 2 hours earlier than scheduled. Thanks for emergency prayer intervention!
Tomorrow is another day. He has an EKG, a bone scan and then we meet with the oncologist. We should be on the road home by maybe 2:00 or 3:00 pm.
Because you are all really great at praying, here's my list!
1. No new cancer anywhere! Shrinkage or disappearance of cancer in lungs!
2. Everything a go to begin therapy!
3. Major funding for drug.
4. Vaccine group.
5. Really mild side effects from drug.
6. Increased energy and healthy weight gain for David.
7. Kidney function improvement!
If you read all of this, wow! Thank you for loving us and praying for us. We continue to trust God.
We started at 10 this morning. I'm thankful the 8 am appointment was changed to tomorrow! We met first with Dr. Karam, the surgeon. They are happy with David's recovery but want him to not lose any more weight. He has lost about 25 pounds since pre-surgery. He promised to do better. Ensure will be added to his diet this week.
We also got a copy of the surgery report. The report confirmed the cancer is the clear cell, the most common type of kidney cancer. This allows David to participate in the trial. Also the adrenal gland and the lymph nodes (2) that were removed were cancer free. The vein that was repaired showed clear margins. So the whole surgery was a good success! Praises!
David realized tonight that he probably won't see Dr. K again and was sorry he didn't give him a big ole bro hug. Maybe we'll send him a note and invite him to come ride horses if he's ever in SM! They had a running horse riding joke since the first appointment.
After that we met with the research nurse/person, I really don't know her title. All the scans the rest of the day are to establish a baseline for the treatment which is also connected to research since we are eligible for the trial. They will have all the scan results by Wednesday. She is also checking with David's insurance to see about his prescription coverage. The drug he will be taking is quite expensive. Cha-ching. OUCH! If his insurance doesn't cover it (like A LOT of it!), she has options like the drug company will cover it or there are other grants. So as soon as they see the scans and figure out how to finance the drugs, they will do the trial randomization. 2/3 of patients will also receive the vaccine.
Also, about the drug, Sutent is the name. We are understanding that fatigue is a major side effect. David wasn't happy about that, since he is just getting his energy back. Pray it won't be too bad. Other common side effects are gastrointestinal junk, mouth sensitivites, and some kind of hand/foot sensitivities. Of course there is a page a mile long (kind of like this post), but these are the most common.
So next week, if they are happy with the scans, we have to come back for 1 day to get the drugs. David will take one dose a day for 6 weeks. At that time, if he gets in the vaccine group, he would come back for the first vaccine. Then back every 3 weeks for another vaccine. The amount of time between vaccines become longer over time. The vaccine is free because it is part of the study. Pray for vaccine. We should know this week if he gets it.
Long story, longer. There will be more scans along the way.
Next David had a blood draw. One of the results was that his Creatitine level is still not quite where they want it to be, but it is better. It was 2. something. It was 5. something in the hospital. They want it to be 1.5ish. They told him to drink more water and some cranberry juice.
Next he had scans. Here a scan, there a scan.
E I E I O.
Cardiac scan, CAP CT (chest, abdomen, pelvic), and brain MRI. Yea! We finished about 2 hours earlier than scheduled. Thanks for emergency prayer intervention!
Tomorrow is another day. He has an EKG, a bone scan and then we meet with the oncologist. We should be on the road home by maybe 2:00 or 3:00 pm.
Because you are all really great at praying, here's my list!
1. No new cancer anywhere! Shrinkage or disappearance of cancer in lungs!
2. Everything a go to begin therapy!
3. Major funding for drug.
4. Vaccine group.
5. Really mild side effects from drug.
6. Increased energy and healthy weight gain for David.
7. Kidney function improvement!
If you read all of this, wow! Thank you for loving us and praying for us. We continue to trust God.
Sunday, February 9, 2014
The next big adventure
We leave for MDA this afternoon.
Tomorrow will be a very long day. David will meet with the surgeon in the morning for followup. I guess this will be the last we see of Dr. K.
Then the tests begin. Blood tests, a CAT scan, some sort of heart scan, and an MRI. We will be at the clinic from 10 am to 10 pm. How much fun can you pack into one day? I'll let you know.
Tuesday it's back for a series of 3 EKG's and a bone scan.
Then we will finally meet with the oncologist, Dr. T. I am just guessing he will have the results of all the tests and scans and David will be ready to move forward to the next big thing.
I'll update tomorrow evening.
Please pray:
1. Safe travel.
2. Keep my babies safe while I'm gone.
3. Great looking tests and scans. No new cancer anywhere. Shrinkage or disappearance of cancer in lungs.
4. Vaccine group.
5. Praise God. As I look back through these posts, I see so very many prayers that have been answered just as we asked. Some have not, but He is in control.
Just for fun, here's a photo of the dance team our daughters are a part of. They won Grand Champion of their division at contest last night! Go Diamond Line! Dream Big!
We press on. Thank you for praying!
Tomorrow will be a very long day. David will meet with the surgeon in the morning for followup. I guess this will be the last we see of Dr. K.
Then the tests begin. Blood tests, a CAT scan, some sort of heart scan, and an MRI. We will be at the clinic from 10 am to 10 pm. How much fun can you pack into one day? I'll let you know.
Tuesday it's back for a series of 3 EKG's and a bone scan.
Then we will finally meet with the oncologist, Dr. T. I am just guessing he will have the results of all the tests and scans and David will be ready to move forward to the next big thing.
I'll update tomorrow evening.
Please pray:
1. Safe travel.
2. Keep my babies safe while I'm gone.
3. Great looking tests and scans. No new cancer anywhere. Shrinkage or disappearance of cancer in lungs.
4. Vaccine group.
5. Praise God. As I look back through these posts, I see so very many prayers that have been answered just as we asked. Some have not, but He is in control.
Just for fun, here's a photo of the dance team our daughters are a part of. They won Grand Champion of their division at contest last night! Go Diamond Line! Dream Big!
We press on. Thank you for praying!
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