On Monday we traveled to the medical center to meet with Tim’s new doctor at MD Anderson’s Clinical Center for Targeted Therapies. We spent almost five hours in clinic and learned a lot.
They offered us a clinical trial and 2 targeted therapies. The clinical trial would be a random trial that there is no evidence that it would work. It’s just a shot in the dark.
After the Dr. Tsomberidou explained the two targeted therapies, we signed consent for both of them. The first one is T Cell therapy. They drew labs today to see if Tim’s white blood cell type qualifies. If it does he’ll have a biopsy of his liver tumor. They will then extract white blood cells from him and engineer them to target the specific molecular makeup of his cancer. The growing of these new cells would take 3-4 months. After they are engineered in a lab, they could be infused through his port to fight the cancer. (This will involve a 3-4 week hospital stay).
The other therapy is called IMPACT ii. They will take a second biopsy while they are getting the one for T cell. They will then study 598 genes and the RNA in them to determine what current chemo therapies would best target those specific genes. This could be done through his port or pills. Likely week or bi weekly.
If he qualifies for T cell, he’ll do the impact ii while they engineer the new cells - basically as long as the cancer responds. We wouldn’t go to T cell until the impact drugs stopped working. The new T cells are good for two years in the lab so that’s good. T cell has shown great results. Some patients in complete remission.
We did the first part -bloodwork and started the financial approval process - Monday.
FAST FORWARD TO TODAY - THURSDAY
The TCell nurse called Tim this morning to let him know that his white blood cell type is negative for the TCell therapy. We are both disappointed but are still hopeful the IMPACT ii study finds something that will work. We anticipate he will have the biopsy next week. Pray for easy recovery and precise hands of the doctor.
Thursday, May 2, 2019
Friday, April 26, 2019
Strong Enough
Only the strength of the Lord Jesus Christ is carrying us through this season. Matthew West’s Strong Enough says
and we know that He is able.
This week has been emotionally taxing. We started the week with the regional golf tournament that didn’t end how we wanted, but know she’s got one more season ahead. It ended with the loss of a sweet friend who was mom to one of Abby’s closest friends.
So what was in the middle of the week? Tim and I saw his oncologist on Wednesday to get the results of his latest scan. Once again, it didn’t go how we wanted, but we’ve had a few days to process and are putting all of our efforts in purposeful prayer. Dr. Nelson used the words “mixed results.” All of Tim's labs looked good and the tumors in his lungs are stable - some even showed some improvement. However, the liver tumors and original rectal tumor all increased by significant margins. Because of this, he will not be continuing this last chemotherapy drug Lonsurf. What this means is they’ve exhausted all currently approved drugs and traditional therapies.
This does NOT mean, however, that they’ve exhausted all possibilities for treatment. His care is being transferred to the Center for Targeted Therapy at MD Anderson downtown to see if he qualifies for any clinical trials. We will have our first consultation Monday.
Now what? You pray without doubt. We pray without doubt. Because James 1:6 tells us “But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.”
1. Pray that he qualifies.
2. Pray that insurance agrees to cover their part.
3. Pray that whatever trial he is on works!
4. Pray for tolerable side effects.
5. Pray for the strength that only the Lord can provide.
One more request...pray comfort for our sweet friends the Bakers as Janice met Jesus face to face today after a long courageous battle against cancer. She and her family are an inspiration to us walking this road called "Cancer Sucks"!
Strong Enough
https://youtu.be/knuHDPbE5es
You must
You must think I'm strong
To give me what I'm going through
You must think I'm strong
To give me what I'm going through
Well, forgive me
Forgive me if I'm wrong
But this looks like more than I can do
On my own
Forgive me if I'm wrong
But this looks like more than I can do
On my own
I know I'm not strong enough to be
Everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
For the both of us
Everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
For the both of us
and we know that He is able.
This week has been emotionally taxing. We started the week with the regional golf tournament that didn’t end how we wanted, but know she’s got one more season ahead. It ended with the loss of a sweet friend who was mom to one of Abby’s closest friends.
So what was in the middle of the week? Tim and I saw his oncologist on Wednesday to get the results of his latest scan. Once again, it didn’t go how we wanted, but we’ve had a few days to process and are putting all of our efforts in purposeful prayer. Dr. Nelson used the words “mixed results.” All of Tim's labs looked good and the tumors in his lungs are stable - some even showed some improvement. However, the liver tumors and original rectal tumor all increased by significant margins. Because of this, he will not be continuing this last chemotherapy drug Lonsurf. What this means is they’ve exhausted all currently approved drugs and traditional therapies.
This does NOT mean, however, that they’ve exhausted all possibilities for treatment. His care is being transferred to the Center for Targeted Therapy at MD Anderson downtown to see if he qualifies for any clinical trials. We will have our first consultation Monday.
Now what? You pray without doubt. We pray without doubt. Because James 1:6 tells us “But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.”
2. Pray that insurance agrees to cover their part.
3. Pray that whatever trial he is on works!
4. Pray for tolerable side effects.
5. Pray for the strength that only the Lord can provide.
One more request...pray comfort for our sweet friends the Bakers as Janice met Jesus face to face today after a long courageous battle against cancer. She and her family are an inspiration to us walking this road called "Cancer Sucks"!
Strong Enough
https://youtu.be/knuHDPbE5es
Wednesday, March 20, 2019
Round 1 of Lonsurf Done...Round 2 On Hold
Round 1 of Lonsurf (oral chemo) was NOT good. After 18 months of various treatments, side effects of chemo hit and they hit hard. Nausea, vomiting, extreme fatigue, and excruciating pain made for rough days. It is so hard to watch a grown man go through this and not be able to do anything to help or relieve the symptoms. He's currently on a continuous release transdermal pain patch and an assortment of meds for nausea, vomiting, and other abdominal issues. For the most part, this means he has good days and bad days - really, it's that he has some bearable moments on some days. CHEMO IS POISON - it's meant to poison the cancer cells, but the fact is Tim is ingesting poison into his body everyday.
His oncologist checked his blood counts today and his white counts are down, so the decision was made not to start the second round of Lonsurf tomorrow as scheduled. This means we will continue to be extra diligent about germs and sicknesses going around. If you see him wearing a mask, don't laugh. He hates it, but I'm sticking to my guns on this one. The current plan is bloodwork again next week and hopefully start the 2nd round on Thursday. I guess we shall see. I just have to hope that as bad as it has been, that maybe it's killing the cancer cells.
His oncologist checked his blood counts today and his white counts are down, so the decision was made not to start the second round of Lonsurf tomorrow as scheduled. This means we will continue to be extra diligent about germs and sicknesses going around. If you see him wearing a mask, don't laugh. He hates it, but I'm sticking to my guns on this one. The current plan is bloodwork again next week and hopefully start the 2nd round on Thursday. I guess we shall see. I just have to hope that as bad as it has been, that maybe it's killing the cancer cells.
Sunday, February 17, 2019
Next...
It seems like here lately, we have either good days or bad days. On the good days, people might never know cancer has entered our lives. But other days it’s as if we are just waiting for the next round of bad to hit - it feels as if Satan is attacking from every side. On these days it is easy for Satan to take hold of our fears and insecurities and we all struggle to find joy.
Toward the end of this last round of the Stivarga, Tim began to experience more side effects as the toxicities built up in his system. He found himself extremely fatigued, coughing and vomiting blood, and continued to lose weight. Tim had a CT scan on Tuesday and saw his oncologist on Thursday for the results. The doctor felt like the fatigue, blood, and weight loss were all side effects of the Stivarga. But those side effects should subside, as the scans showed the Stivarga isn’t working. While the initial tumor is stable, lesions in his liver and lungs continue to increase in size. Some doubled in size in the last month. This is most definitely not the news we wanted to hear.
So what’s next? There is one more approved option for treatment - Lonsurf - an oral chemo. We are awaiting verification with the specialty pharmacy and anticipate receiving the first round shipment on Wednesday. This means he’ll start on Thursday. Each cycle will consist of four pills in the morning and four pills at night for five days, be off for two days, back on for five days, and then off for sixteen days. As we understand it, side effects will be nausea, vomiting, fatigue, and possible hair loss - very similar to his previous chemo. However, this drug’s number one side effect is low blood counts - that’s why he’ll be off 16 days in an attempt to help his numbers recover. This means we expect him to be weaker than before and he’ll be more susceptible to any infections.
Please continue to pray for us as we walk through this next valley and offer us grace as we attempt to keep us all free of germs and spend time with each other.
Toward the end of this last round of the Stivarga, Tim began to experience more side effects as the toxicities built up in his system. He found himself extremely fatigued, coughing and vomiting blood, and continued to lose weight. Tim had a CT scan on Tuesday and saw his oncologist on Thursday for the results. The doctor felt like the fatigue, blood, and weight loss were all side effects of the Stivarga. But those side effects should subside, as the scans showed the Stivarga isn’t working. While the initial tumor is stable, lesions in his liver and lungs continue to increase in size. Some doubled in size in the last month. This is most definitely not the news we wanted to hear.
So what’s next? There is one more approved option for treatment - Lonsurf - an oral chemo. We are awaiting verification with the specialty pharmacy and anticipate receiving the first round shipment on Wednesday. This means he’ll start on Thursday. Each cycle will consist of four pills in the morning and four pills at night for five days, be off for two days, back on for five days, and then off for sixteen days. As we understand it, side effects will be nausea, vomiting, fatigue, and possible hair loss - very similar to his previous chemo. However, this drug’s number one side effect is low blood counts - that’s why he’ll be off 16 days in an attempt to help his numbers recover. This means we expect him to be weaker than before and he’ll be more susceptible to any infections.
Please continue to pray for us as we walk through this next valley and offer us grace as we attempt to keep us all free of germs and spend time with each other.
Saturday, January 26, 2019
Not much news...
It’s been a while since I last posted, and I kind of went through a phase where I just didn’t know what to say. Several people keep telling me I need to post some kind of update here it is.
We were able to enjoy Christmas with almost no indication that Tim has cancer. The New Year, however, brought with it a nasty illness. Tim was admitted at MD Anderson where it was determined that he had contracted Norovirus. YUCK! After a couple of days in isolation getting fluids, and an antibiotic to clear up a tad of pneumonia, he was released to continue recovery at home.
While in the hospital he had a CT scan and we saw his oncologist a couple of weeks ago for those results. The scan showed a few new lesions and some increase in size of a few, but it also showed what appears to be some changes in appearance as a result of his current drug. The doctor wasn’t sure if the increases and new lesions were since starting Stivarga or if perhaps they were between chemo and the start of Stivarga. He will do one more round of three weeks on and have another scan on his week off to check to see if it’s working. At this point we don’t expect to see anything go away, but just pray Stivarga stops any further growth.
For the most part, he’s had really good days. We had even made plans with some friends for dinner tonight, but have had to postpone those. He has started experiencing intense pain in his hip. Our primary care Dr has prescribed a pain patch that is working to control the pain but has it’s own side effects that have knocked him down.
We are thankful for an almost normal life with more good days than bad. Continue to pray for the Stivarga to work and no side effects.
We were able to enjoy Christmas with almost no indication that Tim has cancer. The New Year, however, brought with it a nasty illness. Tim was admitted at MD Anderson where it was determined that he had contracted Norovirus. YUCK! After a couple of days in isolation getting fluids, and an antibiotic to clear up a tad of pneumonia, he was released to continue recovery at home.
While in the hospital he had a CT scan and we saw his oncologist a couple of weeks ago for those results. The scan showed a few new lesions and some increase in size of a few, but it also showed what appears to be some changes in appearance as a result of his current drug. The doctor wasn’t sure if the increases and new lesions were since starting Stivarga or if perhaps they were between chemo and the start of Stivarga. He will do one more round of three weeks on and have another scan on his week off to check to see if it’s working. At this point we don’t expect to see anything go away, but just pray Stivarga stops any further growth.
For the most part, he’s had really good days. We had even made plans with some friends for dinner tonight, but have had to postpone those. He has started experiencing intense pain in his hip. Our primary care Dr has prescribed a pain patch that is working to control the pain but has it’s own side effects that have knocked him down.
We are thankful for an almost normal life with more good days than bad. Continue to pray for the Stivarga to work and no side effects.
Tuesday, December 11, 2018
Finding Perspective
I follow this one lady on Facebook mostly for inspiration in decorating and crafting. Between the posts on her page and so many of my friends posting pictures of their Christmas trees, I found myself stressing. Not wanting to spend the money and more importantly not having the time or energy to make it happen, drove up my anxiety.
Tim hasn’t been well this last week. He’s lost 10 pounds in seven days, is eating very little, and he’s been extremely weak. Rather than continue with the phase-in process of the Stivarga, the decision was made to back down to two a day in an effort to stabilize his blood pressure and increase his strength.
So this past weekend the kids and I did something I never thought I would do. You see I usually put my Christmas stuff up the day after Thanksgiving. But this year other things were going on and it just didn’t happen. Between golf tournaments, playoff football games, and Tim starting a new treatment plan, I found myself almost halfway through December with no Christmas decorations up. Fall leaves and pumpkins still graced my entryway and side tables. Saturday was the first day that the kids and I had no plans. None of us felt very well and getting into the attic and getting boxes and boxes of Christmas decorations down did not sound fun at all. It really just stressed me out. So the kids and I loaded up in the car, went to Hobby Lobby, and bought a 4 foot rustic looking tree straight off the display. I literally unplugged it and put it in the basket. A few picks of pinecones, berries, and glittered sticks and our tree was done. Abby did manage to get in the attic to get down a tree skirt and stockings - I didn’t even get my nativity out. Instead I was satisfied with the nativity wrap around a Scentsy warmer.
I must admit there is a whole lot of guilt in this. I’ve worried about what the kids would feel, what their friends who come over will think. I’ve been cautious about letting people stop by for fear of judgment. But God has spoken very clearly to me and more than anything I am learning to give myself grace. God did not send his Son for us to stress over all of the trappings that come with a commercialized holiday. This season we are trying to step away and make it about the joy and salvation that was gifted us through His birth that Holy night many years ago.
This is in no way judgement on those who’ve surrounded themselves with Christmas cheer and all that decorating for Christmas can be. In fact, I am happy for you and am still a little bit envious. We just know this Christmas it’s not for us, and that is ok. If you are feeling the pressure of meausuring up to others, give yourself grace to be exactly where the Lord wants you to be. Seek Him and ask Him to meet you where you are. Continue to pray for us - for cancer to be gone, for Tim to feel better, for rest for all of us. Most importantly, pray with us that we will seek the Lord and that people will see Jesus in us this Christmas season.
Tim hasn’t been well this last week. He’s lost 10 pounds in seven days, is eating very little, and he’s been extremely weak. Rather than continue with the phase-in process of the Stivarga, the decision was made to back down to two a day in an effort to stabilize his blood pressure and increase his strength.
So this past weekend the kids and I did something I never thought I would do. You see I usually put my Christmas stuff up the day after Thanksgiving. But this year other things were going on and it just didn’t happen. Between golf tournaments, playoff football games, and Tim starting a new treatment plan, I found myself almost halfway through December with no Christmas decorations up. Fall leaves and pumpkins still graced my entryway and side tables. Saturday was the first day that the kids and I had no plans. None of us felt very well and getting into the attic and getting boxes and boxes of Christmas decorations down did not sound fun at all. It really just stressed me out. So the kids and I loaded up in the car, went to Hobby Lobby, and bought a 4 foot rustic looking tree straight off the display. I literally unplugged it and put it in the basket. A few picks of pinecones, berries, and glittered sticks and our tree was done. Abby did manage to get in the attic to get down a tree skirt and stockings - I didn’t even get my nativity out. Instead I was satisfied with the nativity wrap around a Scentsy warmer.
I must admit there is a whole lot of guilt in this. I’ve worried about what the kids would feel, what their friends who come over will think. I’ve been cautious about letting people stop by for fear of judgment. But God has spoken very clearly to me and more than anything I am learning to give myself grace. God did not send his Son for us to stress over all of the trappings that come with a commercialized holiday. This season we are trying to step away and make it about the joy and salvation that was gifted us through His birth that Holy night many years ago.
This is in no way judgement on those who’ve surrounded themselves with Christmas cheer and all that decorating for Christmas can be. In fact, I am happy for you and am still a little bit envious. We just know this Christmas it’s not for us, and that is ok. If you are feeling the pressure of meausuring up to others, give yourself grace to be exactly where the Lord wants you to be. Seek Him and ask Him to meet you where you are. Continue to pray for us - for cancer to be gone, for Tim to feel better, for rest for all of us. Most importantly, pray with us that we will seek the Lord and that people will see Jesus in us this Christmas season.
 |
| For to us a child is born, to us a son is given, and the government will be on his shoulders . And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Isaiah 9:6 |
Monday, December 3, 2018
Moving from 2 to 3
It’s been one week in the phase-in process on Stivarga and we have seen only a few side effects. In the first week Tim experienced flu like symptoms, fever, and extremely high blood pressure, but no hand foot syndrome as of yet. One answered prayer is that he felt well enough to watch Abby play in a two day tournament on Friday and Saturday.
He saw the doctor today and was moved to three pills a day. There was quite a bit of concern about his blood pressure, so now he will take it three times a day and up his blood pressure medication to two a day. We got in a bit of trouble in that we did not take him to the emergency room at MD Anderson Or call the doctor when his temperature got so high last Wednesday evening. But now we know exactly what the cut off is and will do so in the future. He will see the doctor again next Monday to assess how his body is tolerating the Stivarga before moving to the maximum of four pills a day.
He saw the doctor today and was moved to three pills a day. There was quite a bit of concern about his blood pressure, so now he will take it three times a day and up his blood pressure medication to two a day. We got in a bit of trouble in that we did not take him to the emergency room at MD Anderson Or call the doctor when his temperature got so high last Wednesday evening. But now we know exactly what the cut off is and will do so in the future. He will see the doctor again next Monday to assess how his body is tolerating the Stivarga before moving to the maximum of four pills a day.
My friend Christine reminded me of a Kari Jobe song to add to my list of anthems. (I’ve linked it below.) As we continue this journey, our faith remains in our Lord Jesus Christ. Each day we both grow closer to Him. Continue to pray with us for complete healing and minimal side effects. Also pray for my friend Janice as she is undergoing radiation for tumors that have metastasized in her brain.
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