Yesterday was Doug's 14th dara infusion; cycle 5, day 15. July will be cycle 6 with every other week infusions continuing. August will be cycle 7 - the first month with only one infusion.
Doug's weight was 151.5, better than the 150 two weeks ago.
His ANC (absolute neutrophil count - the infection fighting cells) was 1.1. If it falls below 1, he cannot get the infusion. I'm glad he could get it. Most of his blood counts remain low, as is common with cancer treatments. His nurse said "be careful not to get an infection!" We do have face masks that are supposed to stop viruses as well as bacteria but they get hot after a short time of wearing. The best thing is to stay away from crowds, which we do anyway. And good hand washing.
Doug does seem a little less fatigued. He build two birdhouses and put them up on the fence. That is very encouraging.
His skin is looking good; we can't see signs of the fungal infection. But we will keep the July 5 appointment with the dermatologist anyway.
Doug continues to struggle with his eyesight. The scleral lens get cloudy and he has to take them out and clean them several times a day. But we are thankful he can see! I'm still doing all the driving and thankful I'm able to do it.
The local medical center HRRMC is close to hiring a new oncologist. We really miss Dr. O, who has such a good relationship with the Denver specialist. Unfortunately she has been very ill the past several months and probably will not be able to return. The staff and all of the patients (and caregivers) are very sad.
Meanwhile the department is making do with a succession of temporary oncologists. And the PA provides continuity; she is very good.
We have an appointment with the Denver myeloma specialist on July 17. We hope to find out if this treatment is effective. One of the temporary HRRMC docs said it appears Doug might have hit a plateau. That doc has quite an accent, so understanding him is difficult. We will get our information straight from the specialist.
So we keep on our myeloma journey, one step at a time.
Love to all.
"Peace is not the absence of stress but the presence of the Savior." David Jeremiah
Friday, June 28, 2019
Thursday, June 13, 2019
Infusion #13; too much dex!
daratumumab Infusion #13, Cycle 5 day 1
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.
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.
Thursday, June 6, 2019
new drug for skin
The scheme I had to remind Doug to drink more - setting the timer - didn't last very long. He said it was "a pain in the a_ _". So I'm keeping quiet about it. I know he is really trying.
Doug had his eyes checked a couple days ago. The optometrist says his eye pressures are under control now, so the glaucoma is not to blame for his vision problems. His vision is fluctuating due to the cancer drugs.
After I had the YAG laser procedure, I got new lenses for my glasses and my vision is fine now. I'm very thankful!
You may remember that one of the locum oncologists gave Doug a prescription for fluconazole for his skin problem. Doug took those pills for three days before he had to stop - it made him very dizzy and nauseated. We finally saw the light and went to a dermatologist. The dermatologist took some skin scrapings and looked at them under a microscope - so she knew exactly what kind of drug to prescribe. Turns out the prescription cream he was using was not the right one and could have actually made it worse! There were too many doctors trying to help. Wish we had sought out a specialist right away.
So Doug is on two weeks of terbinafine pills. She said this drug can cause liver problems so it's not going to be a long term thing. We will go back to see her in three weeks.
We have not gotten the results yet from the latest myeloma panel which shows which direction the light chains are heading.
We have made an appointment to see the myeloma specialist in Denver, but it won't be until July 26.
This is Doug's week off of infusion; we will go back next week on the 13th.
Love to all.
Doug had his eyes checked a couple days ago. The optometrist says his eye pressures are under control now, so the glaucoma is not to blame for his vision problems. His vision is fluctuating due to the cancer drugs.
After I had the YAG laser procedure, I got new lenses for my glasses and my vision is fine now. I'm very thankful!
You may remember that one of the locum oncologists gave Doug a prescription for fluconazole for his skin problem. Doug took those pills for three days before he had to stop - it made him very dizzy and nauseated. We finally saw the light and went to a dermatologist. The dermatologist took some skin scrapings and looked at them under a microscope - so she knew exactly what kind of drug to prescribe. Turns out the prescription cream he was using was not the right one and could have actually made it worse! There were too many doctors trying to help. Wish we had sought out a specialist right away.
So Doug is on two weeks of terbinafine pills. She said this drug can cause liver problems so it's not going to be a long term thing. We will go back to see her in three weeks.
We have not gotten the results yet from the latest myeloma panel which shows which direction the light chains are heading.
We have made an appointment to see the myeloma specialist in Denver, but it won't be until July 26.
This is Doug's week off of infusion; we will go back next week on the 13th.
Love to all.
Subscribe to:
Posts (Atom)
