Tommy actually got up before I did today. He was on the road by 5:00 am and returned home around 8:30 pm. Thanks to his cousin, Martin, for taking the day to spend with Tom. I am so glad that Tom did not have to go alone to the other side of the state.
Tom met with the doctor first thing. They talked about the side effects & reducing the dosage. Tom is currently the only patient in the study who is receiving the full dose. Tom's side effects are boarder line from having to be reduced. They assured Tom that patients are still having good results with reduced doses. You know my husband and how stubborn he is! Tom was reminded not to be a hero and be honest about all the severity of the side effects as their is a potential for liver damage. Tom has completed cycle 1 of the study and the end of the 8 hour days in Detroit. Cycle 2 reduces his stay to 4 hours per visit. Tom was not able to start the program first thing because his potassium levels were low. This is a direct result because of the change of Tom's diet and lack of solid foods.
Tom was able to meet another MTC (medullary thyroid cancer) patient that is currently participating in the study. Tom really enjoyed meeting this person and talking about their experiences. Tom came home uplifted and thankful that he was able to spend some time with this person.
Last week when Tom had his blood drawn from the West side, they also took his calcitonin level. All the labs came back in the normal range, including his platelets. I could not believe the Calcitonin level and had to call the PCP's office to make sure I was not misreading it. The level is now at 543. Tom's level at the start of this study was 1306. All I could think about is that back at U of M they mentioned the importance of this level. We are taking this as good news!
In my daily devotions I have read this and wanted to share it with you:
Confidence is not based on wishful thinking, but in knowing that God is in control.
Psalms 27:13 "I am still confident of this: I will see the goodness of the Lord in the land of the living." NTV
Tuesday, July 27, 2010
Sunday, July 18, 2010
Chemo
This week I have been able to spend time with my best friend. We've been to both sides of the state combining good memories with the medical and keep Tom focused on the fun things in life.
On Wednesday Tom went to Henry Ford Hospital. I was able to accompany him and meet 2 of the main care takers. The team went over the side effects again with Tom and they were able to give him a prescription to help with his pain. They very carefully celebrated with Tom that he has these side effects while explaining to me that they believe he must be on the chemo and not the placebo. As we were leaving I had to laugh that they had a newbie taking Tom's blood, with his permission. Tom showed him which were the best veins for the draw (my medical expert!) . The chemo is starting to wear Tom down and the effects are taking their toll. It was explained that his dose could be reduced if the side effects became too much for him to bear. On the way home we made a stop in Lasing to watch Sammy Hager perform.
Thursday we received a call from HFH stating that Dr. Ali checked over his blood work and found that his platelets were a little low. Dr. Ali said the Tom was the first patient to have this reaction from the meds and requested that Tom's PCP order another blood draw for them so that Tom did not have to drive all the way back to Detroit. Friday morning he headed to Spectrum Health for his draw and we are awaiting the results this week from his doctor. On Friday night we headed down to my brother's house to do the annual Venetian Festival with him and the Diva a.k.a Robin, his wife. Tom did pretty well as we tried to make sure he was not pushing himself too hard during our visit. Tom is learning to slow down and this was a nice quiet get away for us to spend quality time together.
Tom's next trip to HFH is Tuesday, July 27. This will once again be an all day trip with many blood draws and E.K.G.'s Thank God that Tom has such a good attitude during this whole process. I am grateful for so many caring people and the support we are getting from so many.
"Always be joyful. Always keep on praying. No matter what happens, always be thankful, for this is God's will for you who belong to Christ Jesus." 1 Thessalonians: 17-18
On Wednesday Tom went to Henry Ford Hospital. I was able to accompany him and meet 2 of the main care takers. The team went over the side effects again with Tom and they were able to give him a prescription to help with his pain. They very carefully celebrated with Tom that he has these side effects while explaining to me that they believe he must be on the chemo and not the placebo. As we were leaving I had to laugh that they had a newbie taking Tom's blood, with his permission. Tom showed him which were the best veins for the draw (my medical expert!) . The chemo is starting to wear Tom down and the effects are taking their toll. It was explained that his dose could be reduced if the side effects became too much for him to bear. On the way home we made a stop in Lasing to watch Sammy Hager perform.
Thursday we received a call from HFH stating that Dr. Ali checked over his blood work and found that his platelets were a little low. Dr. Ali said the Tom was the first patient to have this reaction from the meds and requested that Tom's PCP order another blood draw for them so that Tom did not have to drive all the way back to Detroit. Friday morning he headed to Spectrum Health for his draw and we are awaiting the results this week from his doctor. On Friday night we headed down to my brother's house to do the annual Venetian Festival with him and the Diva a.k.a Robin, his wife. Tom did pretty well as we tried to make sure he was not pushing himself too hard during our visit. Tom is learning to slow down and this was a nice quiet get away for us to spend quality time together.
Tom's next trip to HFH is Tuesday, July 27. This will once again be an all day trip with many blood draws and E.K.G.'s Thank God that Tom has such a good attitude during this whole process. I am grateful for so many caring people and the support we are getting from so many.
"Always be joyful. Always keep on praying. No matter what happens, always be thankful, for this is God's will for you who belong to Christ Jesus." 1 Thessalonians: 17-18
Thursday, July 8, 2010
XL-184
The 4th of July celebration was very busy. We were able to spend time with many families. It was hard getting back into the swing of work on Tuesday.
Tom has been on the XL-184 drug for a little over a week now. He has been very good about fasting before and after the 10:00 am hour of taking the pill. The first couple of days he had a feeling of nausea and was wondering if it was just in his head. He is now experiencing more severe side effects. We can only assume that this means he is on the drug and not the placebo. He did have to call Henry Ford today to discuss the side effects. If they continue to worsen they will put him on some pain medication. Tom received the Calcitonin results today. He is higher than ever with the new count at 1306. It will be interesting to see if the count will go down. In reading up on this drug, this will be monitored closely with the physicians.
Tom will be going back to Detroit on July 14 for another check up. I am able to accompany him this time and will be able to see the "other" hospital where he spends his days away. I can't imagine him doing all this and trying to work at the same time. The days of him feeling guilty about not working have come to an abrupt end.
Thank you to everyone who has given us kind words of encouragement & help once again. To my friend with the gift card, I will certainly enjoy a latte next week and "try" to relax anyway! I don't know how I would get through all this without my support so that I can focus on supporting my husband.
"Be glad for all God is planning for you. Be patient in trouble, and prayerful always" Romans 12:12
Tom has been on the XL-184 drug for a little over a week now. He has been very good about fasting before and after the 10:00 am hour of taking the pill. The first couple of days he had a feeling of nausea and was wondering if it was just in his head. He is now experiencing more severe side effects. We can only assume that this means he is on the drug and not the placebo. He did have to call Henry Ford today to discuss the side effects. If they continue to worsen they will put him on some pain medication. Tom received the Calcitonin results today. He is higher than ever with the new count at 1306. It will be interesting to see if the count will go down. In reading up on this drug, this will be monitored closely with the physicians.
Tom will be going back to Detroit on July 14 for another check up. I am able to accompany him this time and will be able to see the "other" hospital where he spends his days away. I can't imagine him doing all this and trying to work at the same time. The days of him feeling guilty about not working have come to an abrupt end.
Thank you to everyone who has given us kind words of encouragement & help once again. To my friend with the gift card, I will certainly enjoy a latte next week and "try" to relax anyway! I don't know how I would get through all this without my support so that I can focus on supporting my husband.
"Be glad for all God is planning for you. Be patient in trouble, and prayerful always" Romans 12:12
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