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!
Thursday, February 13, 2020
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!
Thursday, January 16, 2020
We Like Good News!
In the last post, Mark indicated that he had gone to 45 mg. of Prednisone a day. Unfortunately, it didn't go well. His digestive tract was still being attacked by his immune system. When he went back to 50 mg, he was okay. But, he needs to get off of these steroids! Dr. Urba ordered an infusion of infliximab, brand name Remicade, to reduce inflammation in the bowels. Wednesday, the 8th, Mark had the infusion and so far, it seems to be working. He is now at 40 mg./day and doing well. We hope that he will continue going down 5 mg. every 3-5 days.
Besides causing major fatigue, another side effect of Prednisone is changes in the shape or location of body fat, especially in the neck and abdomen. He's not particularly fond of his thick neck and belly, but hey, it could be much worse! :)
Good news, we have a new grandson! Mark Daniel Hornibrook was born on the 8th of January (his mother's birthday), the 8th child of Michael & Heather, at 8:05 am, weighting 8 lbs. almost 8 oz. He is our 18th grandchild. How's that for stats?!!
Besides causing major fatigue, another side effect of Prednisone is changes in the shape or location of body fat, especially in the neck and abdomen. He's not particularly fond of his thick neck and belly, but hey, it could be much worse! :)
Good news, we have a new grandson! Mark Daniel Hornibrook was born on the 8th of January (his mother's birthday), the 8th child of Michael & Heather, at 8:05 am, weighting 8 lbs. almost 8 oz. He is our 18th grandchild. How's that for stats?!!
Friday, January 3, 2020
Gradual Progress Continues...
The daily dose of Prednisone has gradually dropped to 45 mg. a day (which is still considered a high dose). The goal is to get to 10 mg or less, then transition to hydro-cortisone which will be for maintenance as my body will no longer produce needed cortisol. While on this high dose of steroids I have been very fatigued, and can only do so much in a day before I entirely tire out. One to three naps a day has become my new normal -- and that is highly unusual for me! If I am standing or moving I am wearing down, if I sit I can maintain, and if I am laying down I am regenerating. Occasionally, there is some nausea, which usually goes away with eating or resting.
Today we meet with Dr. Sarah Hopkins, an endocrinologist. She, too, is anxious to get me off of the high dose Prednisone but recognizes the need to control the immune system attacks on my organs. One of the nurses taught us how to administer emergency steroids, if I ever can't keep the pills down or if my body needs more due to trauma. Evidently, the body needs a certain amount all the time or it will fail. She taught us how to fill the syringe and then just stab the needle into the leg or arm, push in the steroid and pull it out. I am sure that will be fun, if I ever need it:-). So now, when we travel we always need to carry a syringe, small vial of steroids and a note explaining to security personal why we are carrying them.
Isn't life fun;-). We are so glad to be here and soon will be celebrating our eighth year together after the initial cancer diagnosis of less than a year to live (in reality the doctor thought 3 months). We have been so blessed and are grateful every day, for another day together.
Thank you for your love, prayers and good thoughts.
Today we meet with Dr. Sarah Hopkins, an endocrinologist. She, too, is anxious to get me off of the high dose Prednisone but recognizes the need to control the immune system attacks on my organs. One of the nurses taught us how to administer emergency steroids, if I ever can't keep the pills down or if my body needs more due to trauma. Evidently, the body needs a certain amount all the time or it will fail. She taught us how to fill the syringe and then just stab the needle into the leg or arm, push in the steroid and pull it out. I am sure that will be fun, if I ever need it:-). So now, when we travel we always need to carry a syringe, small vial of steroids and a note explaining to security personal why we are carrying them.
Isn't life fun;-). We are so glad to be here and soon will be celebrating our eighth year together after the initial cancer diagnosis of less than a year to live (in reality the doctor thought 3 months). We have been so blessed and are grateful every day, for another day together.
Thank you for your love, prayers and good thoughts.
Subscribe to:
Comments (Atom)