Dr. M called this afternoon! It was so good to hear his reassuring voice.
He reminded us that the light chain numbers are way lower than what they were when Doug had the plasmacytomas last December. So although the numbers are creeping up, he does not want to change anything yet. If the light chains get to 300 mg/L, then he says we will go to plan B. Which would be Kyprolis. As of July 9, the light chains were 36.9 mg/L.
For now he wants us to keep on the dara schedule - Doug will go to monthly infusions as planned. His next infusion will be August 22.
If the PET/CT scan shows anything it could change the plan. His team is working on getting the scan scheduled; they have people who specialize in fighting with insurance companies to get approval. I'm sure glad we don't have to do that.
Dr. M says there are three new drugs in trials right now. Although myeloma is not curable yet, we have options for treatment. So we are fortunate; we know folks who are battling with cancers and have run out of treatments.
Dr. M always puts things in perspective. He is calming and always has a plan.
So we are truly counting our blessings tonight.
May the Lord of peace himself give you peace always in every way. The Lord be with you all.
2 Thessalonians 3:16
Monday, July 29, 2019
Saturday, July 27, 2019
More waiting but not frustrated
We did not hear from anyone at CBCI yesterday. But Doug did get a text from Dr. M - he apologized, saying the day got away from him since he was the inpatient attending physician that day. They rotate that duty. He said we should hear on Monday. We expect that if we get a call, it would happen late in the day.
We still don't know what the decision will be, but we don't feel frustrated anymore. We know what happened and we understand why. Frustration comes from wondering if anyone got the message; from not knowing why the delay or if anyone is going to answer.
We of course feel we need to change course right away. But we know from past experiences (too much experience!) that if Dr. M feels a situation is urgent, he takes action quickly.
Feelings are real. Feelings are because of our perception of a situation. But feelings are not always reality. Unfortunately we can't often see the big picture; what we see is magnified and close-up and emotional.
So we trust in the experience of our excellent Dr. M. who does care about his patients. And we trust in the Lord, and we wait.
We did get a call from the CBCI scheduler - we have an appointment on September 4 to see Dr. M in Denver. Not his PA or NP, but the 'real' Dr. M. That's a good feeling.
Peace to all.
We still don't know what the decision will be, but we don't feel frustrated anymore. We know what happened and we understand why. Frustration comes from wondering if anyone got the message; from not knowing why the delay or if anyone is going to answer.
We of course feel we need to change course right away. But we know from past experiences (too much experience!) that if Dr. M feels a situation is urgent, he takes action quickly.
Feelings are real. Feelings are because of our perception of a situation. But feelings are not always reality. Unfortunately we can't often see the big picture; what we see is magnified and close-up and emotional.
So we trust in the experience of our excellent Dr. M. who does care about his patients. And we trust in the Lord, and we wait.
We did get a call from the CBCI scheduler - we have an appointment on September 4 to see Dr. M in Denver. Not his PA or NP, but the 'real' Dr. M. That's a good feeling.
Peace to all.
Friday, July 26, 2019
More Waiting
The last few days have been frustrating.
Dr M's nurse practitioner Kate did call us on Tuesday. She said to hold both the daratumumab and dexamethasone for two weeks before Doug's ear surgery and two weeks after. Both those drugs can slow the healing process. She said the order for a repeat CT scan of the sinuses had been changed to a full body PET/CT scan. Good decision! We are waiting for that to be scheduled.
She said someone would call us Wednesday (Kate's day off) to say what the change to Doug's treatment will be. Evidently the Monday conference didn't happen. Here is where it got frustrating. No call on Wednesday. No call on Thursday, and no answer to an email to the nurse navigator. Nothing. So Doug texted Dr. Jeff Matous himself early this morning. (Yes, he gave us his cell number years ago.) Himself answered that text within five minutes - he said he would get with his team to discuss it later today.
So we are waiting again, this time pretty confident we get a phone call today. I hope! We realize that his practice has gotten huge over the last 11 years. Not only is diagnosis earlier, but people with myeloma are living longer, so the patient load increases. However, there is no excuse for not returning a patient's email to the nurse navigator. She did email us this morning, probably after a word from the doc - here is the wording:
Hi Doug,
I have not been able to sit down with Jeff to discuss. He was out of the office Wednesday and is now on inpatient service. I hope to catch him today to review your flowsheet with all your lab results. I will update you as soon as I make contact.
Doug emailed her back to say we appreciate her response. So we wait.
Yesterday Doug got his dara infusion that was already scheduled. He had lost another pound, down to 147. He's been trying but doesn't have much appetite.
His infusion nurse who is wonderful and caring told him "Right now your job is eating. If you want to live, you eat!" She really laid it on the line. She told him he had to eat every two hours - high protein and healthy fats. Eggs, cheese, yogurt, nuts, peanut butter etc. Ice cream in moderation because of the sugar. She mentioned avocados which he won't eat. I'm thankful she was so blunt - it's what Doug needed to hear. He has to motivate himself; I can't do it for him. I can offer the food but I can't nag him into eating it or plead with him. I've tried.
So far today he is doing much better!
Our wonderful neighbor is doing a small project on the house for us, unasked. We are blessed.
Last night I read from a good devotional by Susie Larson:
May you slow down long enough tomorrow to enjoy the sacredness of the present moment. May God give you plenty of sacred pauses to reflect on His intimate and powerful love for you. May you enjoy lots of face-to-face encounters with those you love. May you receive the gifts He so lovingly wants to give. And tonight, may you enjoy deep, refreshing sleep. Tomorrow is a new day.
Dr M's nurse practitioner Kate did call us on Tuesday. She said to hold both the daratumumab and dexamethasone for two weeks before Doug's ear surgery and two weeks after. Both those drugs can slow the healing process. She said the order for a repeat CT scan of the sinuses had been changed to a full body PET/CT scan. Good decision! We are waiting for that to be scheduled.
She said someone would call us Wednesday (Kate's day off) to say what the change to Doug's treatment will be. Evidently the Monday conference didn't happen. Here is where it got frustrating. No call on Wednesday. No call on Thursday, and no answer to an email to the nurse navigator. Nothing. So Doug texted Dr. Jeff Matous himself early this morning. (Yes, he gave us his cell number years ago.) Himself answered that text within five minutes - he said he would get with his team to discuss it later today.
So we are waiting again, this time pretty confident we get a phone call today. I hope! We realize that his practice has gotten huge over the last 11 years. Not only is diagnosis earlier, but people with myeloma are living longer, so the patient load increases. However, there is no excuse for not returning a patient's email to the nurse navigator. She did email us this morning, probably after a word from the doc - here is the wording:
Hi Doug,
I have not been able to sit down with Jeff to discuss. He was out of the office Wednesday and is now on inpatient service. I hope to catch him today to review your flowsheet with all your lab results. I will update you as soon as I make contact.
Doug emailed her back to say we appreciate her response. So we wait.
Yesterday Doug got his dara infusion that was already scheduled. He had lost another pound, down to 147. He's been trying but doesn't have much appetite.
His infusion nurse who is wonderful and caring told him "Right now your job is eating. If you want to live, you eat!" She really laid it on the line. She told him he had to eat every two hours - high protein and healthy fats. Eggs, cheese, yogurt, nuts, peanut butter etc. Ice cream in moderation because of the sugar. She mentioned avocados which he won't eat. I'm thankful she was so blunt - it's what Doug needed to hear. He has to motivate himself; I can't do it for him. I can offer the food but I can't nag him into eating it or plead with him. I've tried.
So far today he is doing much better!
Our wonderful neighbor is doing a small project on the house for us, unasked. We are blessed.
Last night I read from a good devotional by Susie Larson:
May you slow down long enough tomorrow to enjoy the sacredness of the present moment. May God give you plenty of sacred pauses to reflect on His intimate and powerful love for you. May you enjoy lots of face-to-face encounters with those you love. May you receive the gifts He so lovingly wants to give. And tonight, may you enjoy deep, refreshing sleep. Tomorrow is a new day.
Thursday, July 18, 2019
Doug has hit plateau
Yesterday went to Denver to CBCI - Colorado Blood Cancer Institute where the myeloma specialist Dr. Matous has his practice. We saw his Nurse Practitioner; we knew we wouldn't see Dr. M this time. He has become so busy that we get to see him every other time we go. He told us early on that he picks out only highly qualified people who already are PA or NP and trains them himself in the nuances of myeloma, so he is confident that patients are not getting second rate care. Of course we would prefer to see Dr M every time but that just isn't possible. He is amazing and so are his team. There are several other physicians at CBCI but they don't know Doug's case.
Not only is his practice growing, as he is the premier myeloma doc in Colorado, but he also travels to medical conferences around the world to keep up with the newest in myeloma treatment advances. And as he learns the latest, he in turn speaks at conferences in the U.S. to help educate others.
The NP "Kate" said that it appears from the special blood work that Doug has indeed hit a plateau. This current treatment is not working anymore.
For the first three months the results were very good, then not quite so good, then not good at all. Kate said in cases like this Dr. M often will keep the same drug combo but put patients back on weekly treatment. He has gone from weekly to every other week, and was supposed to start once a month in August. Kate says patients often will begin seeing improvement when they are back to once a week. Dr. M prefers this to starting all over with a different drug.
This makes sense to us, but Doug is not excited about it. Kate will discuss this with Dr M at the all-patient conference on Monday.
Regarding the hypogammaglobulinemia, Kate said that as long as Doug is not getting frequent infections, especially in sinuses or lungs, doing nothing is best. She said we should just use common sense but not to stay home and be isolated.
Kate prescribed a special drug for the diarrhea that is common when patients have been on Revlimid for a while.
Back in December 2018, on Doug's latest PET/CT scan, there was a finding that has been a bit worrisome: "hypermetabolic lytic lesion in the inferior aspect of the left maxillary sinus which could be related to malignancy or inflammatory disease". Lately his nose has been kind of runny but no infection. Kate is going to order a repeat CT for comparison, to see if it has changed. We have to wait for insurance approval for that.
We talked about Doug losing weight. Kate looked back and said that Doug has lost 20 pounds in eight months - a significant weight loss! I think hearing that from her shook him up a little. If he just can't gain weight we will have to do something. Right now he is drinking a Boost. Boost is not instead of meals - in addition to meals.
We left home at 10:00 a.m. and got home at 7:10 p.m. It was a long day but I was able to drive okay. We had one detour and some heavy traffic but no problems. I have never liked driving on busy highways but God sent his angels to look out for us.
Here is a partial list of what I'm thankful for:
Not only is his practice growing, as he is the premier myeloma doc in Colorado, but he also travels to medical conferences around the world to keep up with the newest in myeloma treatment advances. And as he learns the latest, he in turn speaks at conferences in the U.S. to help educate others.
The NP "Kate" said that it appears from the special blood work that Doug has indeed hit a plateau. This current treatment is not working anymore.
For the first three months the results were very good, then not quite so good, then not good at all. Kate said in cases like this Dr. M often will keep the same drug combo but put patients back on weekly treatment. He has gone from weekly to every other week, and was supposed to start once a month in August. Kate says patients often will begin seeing improvement when they are back to once a week. Dr. M prefers this to starting all over with a different drug.
This makes sense to us, but Doug is not excited about it. Kate will discuss this with Dr M at the all-patient conference on Monday.
Regarding the hypogammaglobulinemia, Kate said that as long as Doug is not getting frequent infections, especially in sinuses or lungs, doing nothing is best. She said we should just use common sense but not to stay home and be isolated.
Kate prescribed a special drug for the diarrhea that is common when patients have been on Revlimid for a while.
Back in December 2018, on Doug's latest PET/CT scan, there was a finding that has been a bit worrisome: "hypermetabolic lytic lesion in the inferior aspect of the left maxillary sinus which could be related to malignancy or inflammatory disease". Lately his nose has been kind of runny but no infection. Kate is going to order a repeat CT for comparison, to see if it has changed. We have to wait for insurance approval for that.
We talked about Doug losing weight. Kate looked back and said that Doug has lost 20 pounds in eight months - a significant weight loss! I think hearing that from her shook him up a little. If he just can't gain weight we will have to do something. Right now he is drinking a Boost. Boost is not instead of meals - in addition to meals.
We left home at 10:00 a.m. and got home at 7:10 p.m. It was a long day but I was able to drive okay. We had one detour and some heavy traffic but no problems. I have never liked driving on busy highways but God sent his angels to look out for us.
Here is a partial list of what I'm thankful for:
- Safe travel, good weather
- Kind neighbor who came over to feed the dogs and play with them.
- Great medical team
- People who pray for us
- Doug's good attitude
These are lyrics to the song God Will Make a Way by Don Moen
God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way, He will make a way
Tuesday, July 16, 2019
Hypogammaglobulinemia, Lexapro, Cancer on ear
I don't have any good news to report. We might be facing another detour on our myeloma journey. The docs track Doug's light chains to monitor his myeloma, and the kappa/lambda ratio has been low. The latest blood draw on July 9 showed the ratio dropping almost by half. That's a sign the present treatment isn't working anymore. No one has actually said that to us - yet.
We will go to Denver to see the multiple myeloma specialist tomorrow. We know there are other treatments available, all with side effects though.
Doug now has "profound hypogammaglobulinemia". This long word means there is a reduction in all types of gamma globulins, including antibodies that help fight infection.
People with hypogammaglobulinemia can more easily catch pneumonia and other infections that a healthy immune system would normally protect against.
We will find out tomorrow how the doc plans to handle that. Our chemo nurse says there is a nation-wide shortage of IVIG, and the infusion clinic can't get any. So that's not an option right now. There is a form of it that is given sub-q (by injection into the belly).
Doug's foot fungus is back, after disappearing for a few weeks. I have a call in to the dermatologist; I'm sure Doug will need to go back on the oral prescription Lamasil, as well as the cream.
Speaking of the dermatologist, Doug has a squamous cell cancer on his right ear that has to be removed. Mohs surgery is scheduled for August 7. This will be done in Salida by the same dermatologist who did Mohs surgery on my nose. She is very good.
Doug is not feeling good most of the time but he has gone to church several times, and he rides with me in the car to run errands. He isn't eating a lot but he is trying to do better.
Our primary care nurse practitioner gave Doug a prescription for Lexapro, an anti-depressant that also helps with anxiety. The pharmacist said it might take 4 to 6 weeks before we can tell if it is helping. I'm hoping to see results sooner than that!
Doug did get the dara/rev infusion on July 11. He's been on it almost 6 months.
We are coping with all this one day at a time. And counting our blessings. There is always, always, always something to be thankful for!
Love to all.
We will go to Denver to see the multiple myeloma specialist tomorrow. We know there are other treatments available, all with side effects though.
Doug now has "profound hypogammaglobulinemia". This long word means there is a reduction in all types of gamma globulins, including antibodies that help fight infection.
People with hypogammaglobulinemia can more easily catch pneumonia and other infections that a healthy immune system would normally protect against.
We will find out tomorrow how the doc plans to handle that. Our chemo nurse says there is a nation-wide shortage of IVIG, and the infusion clinic can't get any. So that's not an option right now. There is a form of it that is given sub-q (by injection into the belly).
Doug's foot fungus is back, after disappearing for a few weeks. I have a call in to the dermatologist; I'm sure Doug will need to go back on the oral prescription Lamasil, as well as the cream.
Speaking of the dermatologist, Doug has a squamous cell cancer on his right ear that has to be removed. Mohs surgery is scheduled for August 7. This will be done in Salida by the same dermatologist who did Mohs surgery on my nose. She is very good.
Doug is not feeling good most of the time but he has gone to church several times, and he rides with me in the car to run errands. He isn't eating a lot but he is trying to do better.
Our primary care nurse practitioner gave Doug a prescription for Lexapro, an anti-depressant that also helps with anxiety. The pharmacist said it might take 4 to 6 weeks before we can tell if it is helping. I'm hoping to see results sooner than that!
Doug did get the dara/rev infusion on July 11. He's been on it almost 6 months.
We are coping with all this one day at a time. And counting our blessings. There is always, always, always something to be thankful for!
Love to all.
Subscribe to:
Posts (Atom)
