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!
Thursday, April 26, 2018
Wednesday, April 25, 2018
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.
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.
Tuesday, April 10, 2018
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!
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.
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.
Tuesday, January 23, 2018
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! 😍
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! 😍
Tuesday, November 7, 2017
Thanks anyway
We just got home from MDA. This is the earliest we've ever gotten home, so an 8:30 Dr. appt is worth it!
Yesterday I asked for prayers, 3 specific prayers in the order of how I wanted them.
1. No cancer
2. Shrinkage
3. No progression
God said no, not yet, wait. You get what you get and you don't throw a fit. I threw a small fit.
God spoke to me through Lynn Anderson:
"I beg your pardon, I never promised you a rose garden. Along with the sunshine, there's gotta be a little rain sometime."
As far as bad news goes, it's not horrible. There has been some progression in a lymph node and a lung nodule. Every 3 months the progression has been insignificant, but comparing last November to now, it is enough to warrant changing course. Still the progression is small, 1 cm in a year, and slow. And there is no new cancer.
The cancer responded well to the current treatment for about 3 years, so that is good. But cancer doesn't quit, and eventually finds a way around the treatment. David is the only MDA patient still receiving the vaccine from the original trial he was in. Today was his last one. It is 4 years this month that they found the tumor. He has already beat the odds.
So soon David will begin a new immunotherapy treatment. He will take a daily oral medication along with an infusion every two weeks. One good thing about the infusion is that he can have that done locally so we don't have to travel to Houston every other week. This is a new trial and part of the protocol is that they only admit 3 people at a time. So we are on this list to be admitted. It will be the end of December or the beginning of January. In the meantime he will stay on the regimen he has been on. The hope is because he did so well on the first immunotherapy trial, that he will respond positively to the new one also. Apparently this treatment is very well tolerated so maybe it will actually be better for him. He's not excited that there are needle biopsies involved.
So here is where God spoke to me through the Rolling Stones:
"You can't always get what you want, but if you try sometimes, you just might find, you get what you need."
If you prefer, Philippians 4:19. All our needs are already met. Come Lord Jesus.
Finally, this happened on the way home:
That's a chip in the windshield. It's about the size of a quarter. It sounded like a gunshot when it hit. I am thankful it wasn't. I am thankful it hasn't spread and can be repaired. But still. Ugh.
Final song, courtesy of John Denver:
"Some days are diamond, some days are stone."
Today was a stone kind of day. But we press on.
Please continue to pray. Lots could happen before he starts the new treatment. Like the lesions could shrink or disappear. All Glory be to God.
Please also pray for my friend Holli and the community of Sutherland Springs.
Thank you for loving us.
Yesterday I asked for prayers, 3 specific prayers in the order of how I wanted them.
1. No cancer
2. Shrinkage
3. No progression
God said no, not yet, wait. You get what you get and you don't throw a fit. I threw a small fit.
God spoke to me through Lynn Anderson:
"I beg your pardon, I never promised you a rose garden. Along with the sunshine, there's gotta be a little rain sometime."
As far as bad news goes, it's not horrible. There has been some progression in a lymph node and a lung nodule. Every 3 months the progression has been insignificant, but comparing last November to now, it is enough to warrant changing course. Still the progression is small, 1 cm in a year, and slow. And there is no new cancer.
The cancer responded well to the current treatment for about 3 years, so that is good. But cancer doesn't quit, and eventually finds a way around the treatment. David is the only MDA patient still receiving the vaccine from the original trial he was in. Today was his last one. It is 4 years this month that they found the tumor. He has already beat the odds.
So soon David will begin a new immunotherapy treatment. He will take a daily oral medication along with an infusion every two weeks. One good thing about the infusion is that he can have that done locally so we don't have to travel to Houston every other week. This is a new trial and part of the protocol is that they only admit 3 people at a time. So we are on this list to be admitted. It will be the end of December or the beginning of January. In the meantime he will stay on the regimen he has been on. The hope is because he did so well on the first immunotherapy trial, that he will respond positively to the new one also. Apparently this treatment is very well tolerated so maybe it will actually be better for him. He's not excited that there are needle biopsies involved.
So here is where God spoke to me through the Rolling Stones:
"You can't always get what you want, but if you try sometimes, you just might find, you get what you need."
If you prefer, Philippians 4:19. All our needs are already met. Come Lord Jesus.
Finally, this happened on the way home:
Final song, courtesy of John Denver:
"Some days are diamond, some days are stone."
Today was a stone kind of day. But we press on.
Please continue to pray. Lots could happen before he starts the new treatment. Like the lesions could shrink or disappear. All Glory be to God.
Please also pray for my friend Holli and the community of Sutherland Springs.
Thank you for loving us.
Tuesday, August 8, 2017
Flooding in Houston
I just really didn't have a catchy title. And there was some flooding in Houston. But it doesn't have anything to do with this.
Oh my goodness, there are too many people with cancer. Please make it stop. It never ceases to amaze me when we walk into a waiting room. You really have to see it to believe it. I hope you never see it.
So yada yada yada, we waited a long time for everything as usual.
David's scan showed another slight increase in that dumb lymph node. So after much discussion the Dr. decided to up his dosage again in hopes of finding the sweet spot of enough medicine without too many side effects. The problem is he has been having a lot, a lot, of stomach/intestinal issues. So the meds are increasing. And so are the prescriptions for his other issues. Hopefully this works. Dr. still thinks this drug is very good for David because it has worked for so long. He wants to give it one more try. If there is progression in 3 months they will find another treatment. The one discussed today involves a trip to MDA every 2 weeks for an immunotherapy infusion. Every 2 weeks for as long as it works. Every 2 weeks. Of course we will do what we have to but. Every 2 weeks. Ugh.
Please pray for no progression, more shrinking is what we want! And limited side effects that he can cope with.
If you are so inclined to pray big, pray for NO cancer and NO side effects.
Thank you for praying.
Thank you for loving us.
Oh my goodness, there are too many people with cancer. Please make it stop. It never ceases to amaze me when we walk into a waiting room. You really have to see it to believe it. I hope you never see it.
So yada yada yada, we waited a long time for everything as usual.
David's scan showed another slight increase in that dumb lymph node. So after much discussion the Dr. decided to up his dosage again in hopes of finding the sweet spot of enough medicine without too many side effects. The problem is he has been having a lot, a lot, of stomach/intestinal issues. So the meds are increasing. And so are the prescriptions for his other issues. Hopefully this works. Dr. still thinks this drug is very good for David because it has worked for so long. He wants to give it one more try. If there is progression in 3 months they will find another treatment. The one discussed today involves a trip to MDA every 2 weeks for an immunotherapy infusion. Every 2 weeks for as long as it works. Every 2 weeks. Of course we will do what we have to but. Every 2 weeks. Ugh.
Please pray for no progression, more shrinking is what we want! And limited side effects that he can cope with.
If you are so inclined to pray big, pray for NO cancer and NO side effects.
Thank you for praying.
Thank you for loving us.
Wednesday, May 10, 2017
But what did the scans show!?
I think I have mentioned before how when we finally get in to see the Dr. they want to ask questions and exchange pleasantries much longer than we want to. Because what we really want to know is WHAT DID THE SCANS SHOW!? Then we can talk.
So, I'll get that out of the way first and you can stop reading if you want then because there is other info I want to record.
So.......the disease is stable again! Yay!
And the rest is this.
Because David has had a bummer of a time the last 3 months with stomach/intestinal issues, and has lost 20 pounds! (anyone besides me find those extra pounds?), they gave him the choice of taking weekends off the meds again or dropping down the dosage and staying on 7 days a week. He and the Dr. agreed that consistency might be the best so David will reduce the dosage but stay on the meds all week. They are pretty sure this will help resolve his issues. He can let them know if it doesn't help. They are all about finding a balance between treating the cancer and being able to function as normally as possible. He also gets to take a week off to recover. So yay!
Also at some point he developed a blockage/aneurism in an artery that goes to his spleen. There is some damage to a small part of his spleen. They reminded him to continue is aspirin regimen, which he had forgotten to take for about 3 weeks! Oops! I don't think he'll forget that again!
Finally, David had the option of remaining in the clinical trial. The company conducting the trial has not seen the results they had hoped from this treatment. Of about 400 participants originally in the study, about half have actually died. This is sobering to say the least! However, they do think that maybe for a certain specific population, the treatment has been beneficial. So the FDA agreed to let them continue the study in hopes of narrowing down the characteristics of people who have had success with this treatment. The FDA basically said it wasn't hurting anything so go ahead. Anyway, David decided to stay in because something is working right now.
And now a little about the actual trip. Monday evening the scans took forever, they were horribly (lol they said 30 minutes-NOT) behind.
But Tuesday morning his appointment was at 10am. Guess what time we were sitting in the Drs office? 10 AM! What!?! We were on the road home by noon. That is a true Christmas miracle!
Thank you for all your prayers, especially Monday night. They were definitely felt! Please continue to pray for no new lesions and no new growth. Also pray for David to feel better and no further damage to his spleen.
And if you don't have cancer or are not close to someone who does, I think you are in a small minority. MDA is crowded with patients from all over the world. It is a premier facility in the fight against cancer. Unfortunately they are not going out of business anytime soon. Never take your health for granted!
Thank you for loving us!
So, I'll get that out of the way first and you can stop reading if you want then because there is other info I want to record.
So.......the disease is stable again! Yay!
And the rest is this.
Because David has had a bummer of a time the last 3 months with stomach/intestinal issues, and has lost 20 pounds! (anyone besides me find those extra pounds?), they gave him the choice of taking weekends off the meds again or dropping down the dosage and staying on 7 days a week. He and the Dr. agreed that consistency might be the best so David will reduce the dosage but stay on the meds all week. They are pretty sure this will help resolve his issues. He can let them know if it doesn't help. They are all about finding a balance between treating the cancer and being able to function as normally as possible. He also gets to take a week off to recover. So yay!
Also at some point he developed a blockage/aneurism in an artery that goes to his spleen. There is some damage to a small part of his spleen. They reminded him to continue is aspirin regimen, which he had forgotten to take for about 3 weeks! Oops! I don't think he'll forget that again!
Finally, David had the option of remaining in the clinical trial. The company conducting the trial has not seen the results they had hoped from this treatment. Of about 400 participants originally in the study, about half have actually died. This is sobering to say the least! However, they do think that maybe for a certain specific population, the treatment has been beneficial. So the FDA agreed to let them continue the study in hopes of narrowing down the characteristics of people who have had success with this treatment. The FDA basically said it wasn't hurting anything so go ahead. Anyway, David decided to stay in because something is working right now.
And now a little about the actual trip. Monday evening the scans took forever, they were horribly (lol they said 30 minutes-NOT) behind.
But Tuesday morning his appointment was at 10am. Guess what time we were sitting in the Drs office? 10 AM! What!?! We were on the road home by noon. That is a true Christmas miracle!
Thank you for all your prayers, especially Monday night. They were definitely felt! Please continue to pray for no new lesions and no new growth. Also pray for David to feel better and no further damage to his spleen.
And if you don't have cancer or are not close to someone who does, I think you are in a small minority. MDA is crowded with patients from all over the world. It is a premier facility in the fight against cancer. Unfortunately they are not going out of business anytime soon. Never take your health for granted!
Thank you for loving us!
Subscribe to:
Posts (Atom)