It's been two months since a post. No news is usually good news, right? And for us, it has been.
The prednisone has been replaced with hydrocortisone at a level that mimics the normal cortisol level needed in the body. Because cortisol is essential for life, this medication will always be part of my daily regiment. I wear a bracelet that states "Adrenal Insufficiency" in case of an accident. Whenever my body is in a state of stress, extra cortisol will be required.
Recently, I had some bleeding in my bladder. To be sure there was no cancer present, a cystoscopy was ordered. Some of you may be familiar with this procedure. I was not. As you might imagine, there is only one way to see inside the bladder without an operation. It requires a very long camera to be inserted. The doctor told me ahead of time that there would be some pain and discomfort, but he asked me not to kick him. I responded, "If you don't hurt me, I won't hurt you!" He chuckled and said he was sorry, but it doesn't work that way. Fortunately, it didn't take very long, and he could tell me right then that there was no cancer. Another small problem may be causing the bleeding, which has been exacerbated by the blood thinner I have been taking. After discussing this with the heart doctor, I was able to go off all three heart medications. Yahoo!
The Tafinlar and Mekinist seem to be doing a great job of keeping the tumors from growing. We'll know for sure next month when I have another PET scan.
There seem to be side effects of each medication. There is currently some neuropathy in the toes, swelling of the ankles and feet, surface thrombosis, muscle aches and pains, joint stiffness, cracks in the palms of my hands, general fatigue and weakness, and lack of stamina, and now kinky hair! Still, those are a small cost for life!!
Thank you again for your kind thoughts, faith, and prayers!
Friday, May 1, 2020
Thursday, March 5, 2020
Moving Down on the Meds.
Mark feels better than he has felt in months! It was remarkable how fast the cancer drugs reduced the pain by shrinking the tumor. His energy level has also increased so he is back to working a full day without a nap. It has been amazing!!
Unfortunately, his body started attacking his digestive track again. Just after our last post Mark had to go back up to 30 mg of Prednisone a day. Dr. Taylor scheduled an infusion of infliximab for Monday, the 24th of February. It seems to be working. Mark is back down to 15 mg/day. Dr. Taylor also took him off of the Levoxyl as Mark seems to be producing thyroid hormones again. The antibiotic he had to be on with the high doses of Prednisone was also stopped.
Today we meet with the heart doctor with hopes of getting off the three heart medications. That didn't happen, but he did lower the dose of Flecainide, so it's likely that in two months he will be off all three heart meds.
So...gradually he's tapering off some of the medications. He had so many that he had to create a spreadsheet to keep track of them all! Of course, he will stay on the cancer meds. (Those are the spendy ones!)
We would just like to mention that if you want to get every post, you can type in your email address under the FOLLOW BY EMAIL button on the right side of the screen. Each post will show up in your email account. You can also UNFOLLOW if it's getting to be too much. This is part of our medical history so we like to keep it updated, but we certainly don't want to be invading your Inbox with too many posts.
Unfortunately, his body started attacking his digestive track again. Just after our last post Mark had to go back up to 30 mg of Prednisone a day. Dr. Taylor scheduled an infusion of infliximab for Monday, the 24th of February. It seems to be working. Mark is back down to 15 mg/day. Dr. Taylor also took him off of the Levoxyl as Mark seems to be producing thyroid hormones again. The antibiotic he had to be on with the high doses of Prednisone was also stopped.
Today we meet with the heart doctor with hopes of getting off the three heart medications. That didn't happen, but he did lower the dose of Flecainide, so it's likely that in two months he will be off all three heart meds.
So...gradually he's tapering off some of the medications. He had so many that he had to create a spreadsheet to keep track of them all! Of course, he will stay on the cancer meds. (Those are the spendy ones!)
We would just like to mention that if you want to get every post, you can type in your email address under the FOLLOW BY EMAIL button on the right side of the screen. Each post will show up in your email account. You can also UNFOLLOW if it's getting to be too much. This is part of our medical history so we like to keep it updated, but we certainly don't want to be invading your Inbox with too many posts.
Friday, February 21, 2020
The pain is gone...
I took my first two pills of Tafinlar last night at 7 pm. By 9 pm 80% of the pain that I could not cover up with 3 ibuprofen and 2 Tylenol or 2 Hydrocodone was gone. I slept last night with no pain meds and this morning I took two more pills and two hours later the pain was gone!! Amazing drugs! amazing body response!! I feel very blessed!!! Another mole whacked! Now we just need to get off of the Prednisone and tame the diarrhea.
Thank you for your love, faith, prayers and hope!!!
BTW, Dr. Taylor started in the field in 2010, two years before my metastasized melanoma was discovered. At that time none of the drugs that have saved my life, existed. Normally melanoma metastasizes within 5 years of the original moles, but in my case, it was 12 or 22 years later. Being slow at some things is good:-)
Thank you for your love, faith, prayers and hope!!!
BTW, Dr. Taylor started in the field in 2010, two years before my metastasized melanoma was discovered. At that time none of the drugs that have saved my life, existed. Normally melanoma metastasizes within 5 years of the original moles, but in my case, it was 12 or 22 years later. Being slow at some things is good:-)
Thursday, February 20, 2020
Moving Forward Again
At our last appointment with Dr. Urba, he told us that he had taken a new position with Providence. He has been head of the Cancer Research Institute in Portland, and has relented to accepting the position as head of research for all of Providence, which is mainly the Western US. Because he will be traveling often, he simply will not have time to care for patients. He assured us that he would not be completely out of touch and that we would be taken care of.
With trepidation we went to an appointment today where we met our new doctor, Matthew Taylor, MD. He is AWESOME!!! One of the nurses commented that he's like a younger Dr. Urba, kind and caring, and also very sharp! As we got to know him, we learned that we had all graduated from Brigham Young University. Dr. Taylor was with OHSU for 13 years and just recently joined the Providence team as his passion is research. His focus has been with metastatic melanoma so he is very aware of what is happening in that world. We are delighted to have him as our doctor. He will continue to confer with Dr. Urba. So...we are feeling comforted that we are in good hands.
This past week has not been easy. Mark had to increase the Prednisone to 15 mg/day as his immune system was attacking his digestive track again. Tomorrow he will start lowering the dose and see how it goes this time. The cold/cough that wiped him out for about a week, is gradually getting better. But, the pain in his abdomen has continued to increase to the point that over the counter medications, and even hydrocodone doesn't completely block the pain.
Dr. Taylor went over our options, which are the ones listed in the last post. We discussed each one in depth and came to the conclusion that Mark will go back on Tafinlar and Mekinist. Last March it shrank the tumor in the abdomen in hours and continued to work for months. It is not a cure, but it definitely gives us more time, and with minimal side effects. If tumor growth starts while on these meds, we can add Ketruda. Surgery is still an option if the tumor is the only place there are cancerous cells, but none of us believe that is the case. The bright spot in the liver could be a small tumor. If we do the surgery now, and the one in the liver starts growing, we've basically wasted a surgery as he would have to go on a more systemic medicine anyway. So...Mark took his first Tafinlar tonight. He is looking forward to being pain-free!
Dr. Taylor is optimistic that as research continues, new discoveries are being made. The longer we can play whack-a-mole, the more chance there is of finding a permanent cure. Even if not, we feel confident that we still have more time together.
Tonight we returned to McCormick & Schmick's where we celebrated Valentine's Day 8 years ago on February 17, 2012. There the first phone call came that indicated there was a problem -- an X-ray showed 3 dots in Mark's lungs. While it was concerning, nothing seemed to thwart our celebration, and we still have happy memories of that night together. The following day is when we realized it was more serious than we had thought. It was 11 days later that we learned the full diagnosis -- innumerable tumors in both lungs, lime size tumor in the liver, lime size tumor in the right ventricle of the heart and multiple tumors in tissue throughout his body. Those went away, others have come and gone in the bones and other locations. Currently, we are in our 7th round of tumor growth.
We've weathered lots of storms with divine guidance and will continue to trust in the Lord and his timing. This scripture and quote recently gave us comfort:
"Peace I leave with you, my peace I give unto you...Let not your heart be troubled, neither let it be afraid." (John 14:27)
"I submit to you that may be one of the Savior's commandments that is...almost universally disobeyed; and yet I wonder whether our resistance to this invitation could be any more grievous to the Lord's merciful heart.
"I am convinced that none of us can appreciate how deeply it wounds the loving heart of the Savior of the world when he finds that his people do not feel confident in his care or secure in his hands or trust in his commandments.
"Just because God is God, just because Christ is Christ, they cannot do other than care for us and bless us and help us if we will but come unto them, approaching their throne of grace in meekness and lowliness of heart. They can't help but bless us. They have to. It is their nature."
Jeffrey R. Holland, Devotional delivered at Brigham Young University on 2 March 1997.
Again, we truly appreciate all the prayers, good thoughts, love and support!!!
With trepidation we went to an appointment today where we met our new doctor, Matthew Taylor, MD. He is AWESOME!!! One of the nurses commented that he's like a younger Dr. Urba, kind and caring, and also very sharp! As we got to know him, we learned that we had all graduated from Brigham Young University. Dr. Taylor was with OHSU for 13 years and just recently joined the Providence team as his passion is research. His focus has been with metastatic melanoma so he is very aware of what is happening in that world. We are delighted to have him as our doctor. He will continue to confer with Dr. Urba. So...we are feeling comforted that we are in good hands.
This past week has not been easy. Mark had to increase the Prednisone to 15 mg/day as his immune system was attacking his digestive track again. Tomorrow he will start lowering the dose and see how it goes this time. The cold/cough that wiped him out for about a week, is gradually getting better. But, the pain in his abdomen has continued to increase to the point that over the counter medications, and even hydrocodone doesn't completely block the pain.
Dr. Taylor went over our options, which are the ones listed in the last post. We discussed each one in depth and came to the conclusion that Mark will go back on Tafinlar and Mekinist. Last March it shrank the tumor in the abdomen in hours and continued to work for months. It is not a cure, but it definitely gives us more time, and with minimal side effects. If tumor growth starts while on these meds, we can add Ketruda. Surgery is still an option if the tumor is the only place there are cancerous cells, but none of us believe that is the case. The bright spot in the liver could be a small tumor. If we do the surgery now, and the one in the liver starts growing, we've basically wasted a surgery as he would have to go on a more systemic medicine anyway. So...Mark took his first Tafinlar tonight. He is looking forward to being pain-free!
Dr. Taylor is optimistic that as research continues, new discoveries are being made. The longer we can play whack-a-mole, the more chance there is of finding a permanent cure. Even if not, we feel confident that we still have more time together.
Tonight we returned to McCormick & Schmick's where we celebrated Valentine's Day 8 years ago on February 17, 2012. There the first phone call came that indicated there was a problem -- an X-ray showed 3 dots in Mark's lungs. While it was concerning, nothing seemed to thwart our celebration, and we still have happy memories of that night together. The following day is when we realized it was more serious than we had thought. It was 11 days later that we learned the full diagnosis -- innumerable tumors in both lungs, lime size tumor in the liver, lime size tumor in the right ventricle of the heart and multiple tumors in tissue throughout his body. Those went away, others have come and gone in the bones and other locations. Currently, we are in our 7th round of tumor growth.
We've weathered lots of storms with divine guidance and will continue to trust in the Lord and his timing. This scripture and quote recently gave us comfort:
"Peace I leave with you, my peace I give unto you...Let not your heart be troubled, neither let it be afraid." (John 14:27)
"I submit to you that may be one of the Savior's commandments that is...almost universally disobeyed; and yet I wonder whether our resistance to this invitation could be any more grievous to the Lord's merciful heart.
"I am convinced that none of us can appreciate how deeply it wounds the loving heart of the Savior of the world when he finds that his people do not feel confident in his care or secure in his hands or trust in his commandments.
"Just because God is God, just because Christ is Christ, they cannot do other than care for us and bless us and help us if we will but come unto them, approaching their throne of grace in meekness and lowliness of heart. They can't help but bless us. They have to. It is their nature."
Jeffrey R. Holland, Devotional delivered at Brigham Young University on 2 March 1997.
Again, we truly appreciate all the prayers, good thoughts, love and support!!!
Subscribe to:
Posts (Atom)