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:-)
Friday, February 21, 2020
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!!!
Thursday, February 13, 2020
No More Wondering
Yesterday Mark went in for the PET scan that Dr. Urba had ordered. Within a few hours we got this text from him:
Hi Mark,
I tried to call. We can try again tomorrow. It is important to listen to your body. The PET scan is bright in the left adrenal gland where you hurt. I have to review the scans with the radiologist as there is one other very small but bright spot in the liver. I'll reach out sometime tomorrow.
Walt
(Bright means an active tumor.)
Of course, this isn't the news we wanted, but it is good to know the reason for the pain, and be able to move forward with treatments. There are still several directions we can go.
1) Back to targeted therapy, Tafinlar and Mekinist - to reduce the size thus reducing the pain. It is not a cure, but a good stall.
2) Back to Ketruda, the single immunotherapy drug that worked so well before, or Opdivo which is similar and reacts the same. Last time Mark was on Ketruda for a year and the tumors stayed away for another year. This time he will stay on one of these treatments for two years. That means infusions every three weeks. His side effects were minimal last time so we expect the same. Yervoy is out of the picture now because of the adverse side effects.
3) Hmmm, surgery doesn't seem likely if there is cancerous activity in more than one site.
4) There is also Interleukin 2. We understand that the rate of cure is not nearly as good as the other immunotherapy drugs, and the side effects can be undesirable. If it's the only option left, it is a possibility.
We will meet with Dr. Urba soon to discuss the next steps. Because we expected this, it has not been a shock and we are doing well.
Our time together is precious and we are making the most of it!
Hi Mark,
I tried to call. We can try again tomorrow. It is important to listen to your body. The PET scan is bright in the left adrenal gland where you hurt. I have to review the scans with the radiologist as there is one other very small but bright spot in the liver. I'll reach out sometime tomorrow.
Walt
(Bright means an active tumor.)
Of course, this isn't the news we wanted, but it is good to know the reason for the pain, and be able to move forward with treatments. There are still several directions we can go.
1) Back to targeted therapy, Tafinlar and Mekinist - to reduce the size thus reducing the pain. It is not a cure, but a good stall.
2) Back to Ketruda, the single immunotherapy drug that worked so well before, or Opdivo which is similar and reacts the same. Last time Mark was on Ketruda for a year and the tumors stayed away for another year. This time he will stay on one of these treatments for two years. That means infusions every three weeks. His side effects were minimal last time so we expect the same. Yervoy is out of the picture now because of the adverse side effects.
3) Hmmm, surgery doesn't seem likely if there is cancerous activity in more than one site.
4) There is also Interleukin 2. We understand that the rate of cure is not nearly as good as the other immunotherapy drugs, and the side effects can be undesirable. If it's the only option left, it is a possibility.
We will meet with Dr. Urba soon to discuss the next steps. Because we expected this, it has not been a shock and we are doing well.
Our time together is precious and we are making the most of it!
Tuesday, February 4, 2020
A Roller Coaster
I don't like to be a whiner and I know that I've been blessed immensely, nevertheless, I am human, and the past few weeks have been for me a roller-coaster of emotions!
With Mark's immune system so aggressively attacking his body, we were confident that it was also attacking the cancer. Our hopes were high that we could be done with cancer, and that is still a possibility! About two weeks ago, Mark informed me that he was having pain in the same place in his abdomen where the last tumor had been. While it was mild, we had to face the fact that a tumor could be growing again. The following Saturday night he awoke to intense pain. Afterwards, I couldn't sleep and by morning I was convinced that the cancer had returned. That Sunday I was quite emotional. During church the opening hymn was "How Firm a Foundation", the song that was sung the Sunday after we found out about the cancer eight years ago. It has become our theme song. It should have given me comfort with these words, "Fear not, I am with thee, oh be not dismayed, for I am thy God and will still give the aid." Unfortunately, it only reminded me of how I felt that day knowing that my dearest friend and sweetheart likely had only months to live. How could I live without him?!!
The following day, Monday the 27th of January, Mark had a CT Scan. Dr. Urba typically lets us know the results right away, but he didn't. That did NOT give me any comfort. Tuesday the tests results were in My Chart with a note from Dr. Urba, that it was a mixed scan. There was no evidence of new tumors, and the existing ones did not look active. He wasn't concerned. That was a relief and I once again had some hope that the cancer was gone. Within a day or two, Mark's pain intensified. Because we went through this scenario last year at this time, we are not as confident as we'd like to be.
Yesterday, we met with Dr. Urba. He is hopeful that the pain is from scar tissue which can be irritating or perhaps something else causing the discomfort. However, we are to monitor the pain for the next two weeks. If it persists or worsens, a PET scan will be ordered. PET's are much more accurate because they actually highlight the cancer, whereas the CT is only a 3-dimensional X-ray. While we aren't giving up hope, we are also realistic.
Mark is down to 10 mg/day of Prednisone. While the fatigue sometimes hampers his ability to do what he'd like, and he has had some dizziness and nausea, it hasn't been too bad. He is excited to get off of it. With time, his body will adjust.
With that all said, yes, it has been an emotional roller coaster! We truly appreciate the help and support we have received, and hope we can give that kind of love and support to others in their times of need. Ultimately, we recognize that it is all in the Lord's hands and those are hands we trust!
With Mark's immune system so aggressively attacking his body, we were confident that it was also attacking the cancer. Our hopes were high that we could be done with cancer, and that is still a possibility! About two weeks ago, Mark informed me that he was having pain in the same place in his abdomen where the last tumor had been. While it was mild, we had to face the fact that a tumor could be growing again. The following Saturday night he awoke to intense pain. Afterwards, I couldn't sleep and by morning I was convinced that the cancer had returned. That Sunday I was quite emotional. During church the opening hymn was "How Firm a Foundation", the song that was sung the Sunday after we found out about the cancer eight years ago. It has become our theme song. It should have given me comfort with these words, "Fear not, I am with thee, oh be not dismayed, for I am thy God and will still give the aid." Unfortunately, it only reminded me of how I felt that day knowing that my dearest friend and sweetheart likely had only months to live. How could I live without him?!!
The following day, Monday the 27th of January, Mark had a CT Scan. Dr. Urba typically lets us know the results right away, but he didn't. That did NOT give me any comfort. Tuesday the tests results were in My Chart with a note from Dr. Urba, that it was a mixed scan. There was no evidence of new tumors, and the existing ones did not look active. He wasn't concerned. That was a relief and I once again had some hope that the cancer was gone. Within a day or two, Mark's pain intensified. Because we went through this scenario last year at this time, we are not as confident as we'd like to be.
Yesterday, we met with Dr. Urba. He is hopeful that the pain is from scar tissue which can be irritating or perhaps something else causing the discomfort. However, we are to monitor the pain for the next two weeks. If it persists or worsens, a PET scan will be ordered. PET's are much more accurate because they actually highlight the cancer, whereas the CT is only a 3-dimensional X-ray. While we aren't giving up hope, we are also realistic.
Mark is down to 10 mg/day of Prednisone. While the fatigue sometimes hampers his ability to do what he'd like, and he has had some dizziness and nausea, it hasn't been too bad. He is excited to get off of it. With time, his body will adjust.
With that all said, yes, it has been an emotional roller coaster! We truly appreciate the help and support we have received, and hope we can give that kind of love and support to others in their times of need. Ultimately, we recognize that it is all in the Lord's hands and those are hands we trust!
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