Doug's weight was 150 today - much better than 147 two weeks ago. Doug's labs were acceptable for infusion.
The infusion went smoothly and was finished by 2:00 p.m. We sure appreciate the friendly atmosphere, camaraderie with other patients and cheerful capable nurses.
Doug's feet and groin look much better since the dermatologist changed what another doctor had him on. She put him on oral terbinafine 250 mg. for two weeks and Lotrimin cream. We go back for a follow up July 5. She did say that with this disease cure rates are excellent but recurrence is high.
Several weeks ago I was doing some reading and found an interesting scientific article on dexamethasone. It said that when myeloma patients had been on dexamethasone for a long time, some doctors felt it was okay to lower the dex dose.
So I emailed our myeloma specialist in Denver (actually his nurse navigator) and asked if Doug's dex dose could be lowered. The answer was yes, but he wanted more information. The nurse navigator emailed me today with this message:
"I spoke with Dr regarding Doug's steroid dose. Since he is getting 100mg of IV Solu Medrol on dara infusion days he does NOT need to take 20 mg oral dex on Fridays. He has been taking too much steroid. On the off weeks from dara, he WILL need to take the oral dex."
He has been taking too much steroid! Solu Medrol is the equivalent of dex. We were sure - I had it in my notes - that Doug needed to take the oral dex every week. No mention was made of infusion days.
We are not pointing the finger at anyone. This is what can happen when one doc, our specialist in Denver, is running the show, but the actual hands-on is being done in a different medical center. Too many cooks in the kitchen. Resulting in double-dipping dex.
Here is a partial list of side effects of dex; Doug has many/most of these which is why I asked for a lower dose in the first place.
- Irritability
- Difficulty sleeping (insomnia)
- Swelling in ankles and feet (fluid retention)
- Heartburn
- Muscle weakness
- Impaired wound healing
- Increased blood sugar levels
- anxiety
- blurred vision, eye tearing, decreased vision
- fatigue
- dry skin
- skin rash
- unexplained weight loss
- glaucoma
- decreased resistance to infection
This reduction in dex will make a difference. I am SO glad I took the initiative to ask about it. Thank you God!
Moral of the story - don't be afraid to ask questions. Don't ever assume everything is being done right. Medical people are human. Every patient needs an advocate who can and will ask questions.
This is from one of my favorite devotionals - Blessings for the Morning and Evening by Susie Larson.
May Jesus speak peace to your soul and calm to your storm.
May you sense His nearness even when the winds blow.
May you know His joy and strength from the top of your head to the tips of your toes.
May the hope He stirs in your heart cause you to live with a holy expectancy and trust that this storm too shall pass.
And in the days ahead, may His very real love for you compel you to dance in the rain before the sun breaks through.
Moral of the story - don't be afraid to ask questions. Don't ever assume everything is being done right. Medical people are human. Every patient needs an advocate who can and will ask questions.
This is from one of my favorite devotionals - Blessings for the Morning and Evening by Susie Larson.
May Jesus speak peace to your soul and calm to your storm.
May you sense His nearness even when the winds blow.
May you know His joy and strength from the top of your head to the tips of your toes.
May the hope He stirs in your heart cause you to live with a holy expectancy and trust that this storm too shall pass.
And in the days ahead, may His very real love for you compel you to dance in the rain before the sun breaks through.
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