For the past couple of weeks Doug has had back pain. He didn't tell me at first, so I'm not sure when it started. The oncology specialist ordered a PET/CT scan which was done December 16. It didn't show anything new. The pain is in his lower back/hips, more so on the right side. At times it radiates down his right leg. Since the scan didn't show anything, all concerned are assuming it is not the cancer acting up. Most days he has been feeling well enough to go out and do things. At night, when lying down it gets pretty bad. He is really getting sleep deprived. We have an appointment with an orthopedist January 5.
The oncologist wrote Doug a prescription for Vicodin, but Doug says it doesn't do much for the pain at its worst. Yesterday I finally went to a recreational marijuana shop (legal in Colorado) and got some drops for him to try, hoping it would help him sleep. It was interesting in the pot shop. The gal was very kind and seemed to know her business.
The MJ didn't work very well, but we are going to pursue getting the doc to sign for a medical card. Medical marijuana can be sold at higher doses. We figure it can't hurt.
This morning at 7:30 Doug took a morphine pill, 30 mg, which we had left over from a previous pain episode. He hates morphine because it makes him feel so drugged. He went back to bed and I thought he would be out for a long time. Two hours later he woke up and wanted breakfast! Now he's sitting in recliner watching TV.
This pain has been up and down, on and off. There were two days he had no pain at all. It is really so unpredictable. Yesterday afternoon he had a good visit with a neighbor and walked to the corner mailbox.
I'm praying for guidance and just taking it one step at a time.
I will go to a neighbor's house for Christmas dinner today. I think Doug will stay home. Tomorrow we are supposed to go to Denver for the monthly oncology specialist appointment and to get chemo. The weather forecast isn't the best so we will re-evaluate in the morning.
Our town has heavy hearts. A baby died a week ago after being treated 3 days for pneumonia. No one has said it was the flu but I rather think it was. This morning our church sent an email asking for urgent prayers for another baby who is sick with a high temp. We can't understand why these horrible things happen. All who know these families are just heartsick. We cry out to God but we still put our faith in Him.
Even though we don't feel much like celebrating, we rejoice in the birth of baby Jesus.
Thursday, December 25, 2014
Friday, December 12, 2014
A Cold but No Fever
Doug hasn't been able to shake his cold. So a couple days ago he went to our local clinic to see our nurse practitioner. He didn't have a fever but she wrote him a prescription for antibiotics with directions not to fill the script unless he gets worse. His immunoglobulins are low so we want to keep on top of any possible infection.
The NP told us that if either of us get flu symptoms to call the clinic to get Tamaflu. If taken within three days of onset of symptoms it will stop the flu.
Doug got his chemo at the new lowered dose two days ago and this time didn't get the horrible diarrhea, so we are very glad about that.
We feel very blessed this Christmas season. Jesus is the reason for the season!
The NP told us that if either of us get flu symptoms to call the clinic to get Tamaflu. If taken within three days of onset of symptoms it will stop the flu.
Doug got his chemo at the new lowered dose two days ago and this time didn't get the horrible diarrhea, so we are very glad about that.
We feel very blessed this Christmas season. Jesus is the reason for the season!
Wednesday, December 3, 2014
A week off chemo
The Denver specialist gave Doug a week off chemo! Yippee! And when it restarts the Velcade dose will be lowered again. Originally the Velcade was given at a dose of 1.5mg/m2. On Nov 24 it was lowered to 1.3mg/m2. Now it will be 1 mg/m2. So it will be 2/3 of the original dose. Hopefully this will greatly reduce the side effects.
We had a wonderful Thanksgiving with family. All five of our grandchildren were home! Three of them are in college, one in the military, and one working, so getting them all together is increasingly difficult. We really enjoyed the time together, but Doug came down with a cold two days later. He has been sleeping more. His appetite is good.
Love to all.
We had a wonderful Thanksgiving with family. All five of our grandchildren were home! Three of them are in college, one in the military, and one working, so getting them all together is increasingly difficult. We really enjoyed the time together, but Doug came down with a cold two days later. He has been sleeping more. His appetite is good.
Love to all.
Tuesday, November 25, 2014
Velcade Dose Reduction
Yesterday we went to Denver for the monthly myeloma specialist visit, Zometa infusion, and CyBorD treatment. Last week we saw the general oncologist in Salida, and she ordered a myeloma panel blood test. It showed another drop in light chains (cancer marker)!
The Denver specialist decided, since Doug is showing an excellent response to the Velcade, and he has such a problem with diarrhea -- that it would be good to lower the dosage of Velcade by 15%. He said he has never had a patient with such a severe diarrhea side effect from this drug. This specialist is always concerned with his patients' quality of life and doesn't want Doug to be confined to the house several days a week. Doug will be followed closely of course, to make sure the lower dose is still effective.
We did get a valuable aid against diarrhea from the chemo nurses in Salida - BanaTrol, formulated to treat chemo related diarrhea. It is a powder; Doug puts it in applesauce or oatmeal. The nurse said it is okay to take Immodium also. So if anyone has intractable diarrhea from chemo, check it out. We got samples to see if it would work and then ordered a case from Amazon. No prescription needed. Is there anything you can't get from Amazon?
Once the full six cycles (six months ) of CyBorD been completed, Doug will have some tests, such as a PET/CT scan and others, done to see if in fact he is back in remission. If yes, then he can go on a maintenance dose.
Doug is having some slight neuropathy in his fingers now but thankfully it is not affecting his ability to do things such as fasten buttons.
Doug's blood counts are fine, with the exception of a high glucose - 203. That is way too high. The dexamethasone could be partially responsible, but lack of exercise and too many carbs are probably a factor too. He will have an A1C blood test done by our local nurse practitioner and go from there.
We had an early appointment in Denver, so left home at 6:00 a.m. On the way we saw the most gorgeous sunrise ever! First a hint of yellow light behind mountains, then orange reflected on clouds, then red and gold that made the clouds glow brightly. Then a softer pink and light blue. It changed every minute. What a beautiful gift from God's creation. Have you ever noticed there can be no beautiful sunsets and sunrises without clouds? Isn't that like life - without difficult times, we can't really appreciate beauty and goodness.
Love to all.
The Denver specialist decided, since Doug is showing an excellent response to the Velcade, and he has such a problem with diarrhea -- that it would be good to lower the dosage of Velcade by 15%. He said he has never had a patient with such a severe diarrhea side effect from this drug. This specialist is always concerned with his patients' quality of life and doesn't want Doug to be confined to the house several days a week. Doug will be followed closely of course, to make sure the lower dose is still effective.
We did get a valuable aid against diarrhea from the chemo nurses in Salida - BanaTrol, formulated to treat chemo related diarrhea. It is a powder; Doug puts it in applesauce or oatmeal. The nurse said it is okay to take Immodium also. So if anyone has intractable diarrhea from chemo, check it out. We got samples to see if it would work and then ordered a case from Amazon. No prescription needed. Is there anything you can't get from Amazon?
Once the full six cycles (six months ) of CyBorD been completed, Doug will have some tests, such as a PET/CT scan and others, done to see if in fact he is back in remission. If yes, then he can go on a maintenance dose.
Doug is having some slight neuropathy in his fingers now but thankfully it is not affecting his ability to do things such as fasten buttons.
Doug's blood counts are fine, with the exception of a high glucose - 203. That is way too high. The dexamethasone could be partially responsible, but lack of exercise and too many carbs are probably a factor too. He will have an A1C blood test done by our local nurse practitioner and go from there.
We had an early appointment in Denver, so left home at 6:00 a.m. On the way we saw the most gorgeous sunrise ever! First a hint of yellow light behind mountains, then orange reflected on clouds, then red and gold that made the clouds glow brightly. Then a softer pink and light blue. It changed every minute. What a beautiful gift from God's creation. Have you ever noticed there can be no beautiful sunsets and sunrises without clouds? Isn't that like life - without difficult times, we can't really appreciate beauty and goodness.
Love to all.
Wednesday, November 5, 2014
Light Chains Down!
We got the results of the latest MM panel: Lambda light chains are down to 22.93 - this is a dramatic drop from 261.96 last month. Very good news! Praise the Lord!
Doug emailed and asked the specialist if this means he could drop the Velcade dosage. The answer is no; he wants Doug to complete 6 full cycles. We figure it will go through February. The side effects are a worthwhile price to pay if it puts Doug back into remission.
Doug emailed and asked the specialist if this means he could drop the Velcade dosage. The answer is no; he wants Doug to complete 6 full cycles. We figure it will go through February. The side effects are a worthwhile price to pay if it puts Doug back into remission.
"May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ." 2 Thessalonians 3:5
Friday, October 31, 2014
GI Side Effects Worse
On October 13 Doug developed abdominal discomfort. Back in 2010 he had quite severe pancreatitis resulting in an ambulance trip and a hospital stay, so he wanted to make sure this was not the beginning of pancreatitis again. He called our local clinic and was told to go to the ER for the blood test. That proved negative which was a big relief.
On October 20 we went to Colorado Springs for Doug's yearly cardiology appointment. He had an EKG which showed evidence of his prior 'right bundle branch block' but no current problems, so nothing to worry about. He had a blood draw to check cholesterol; that is in the normal range.
Doug has had his CyBorD chemo every week. His GI side effects are getting more troublesome. The day after treatment the diarrhea starts and usually lasts two or even three days. Those days he stays home. Taking enough Immodium to deal with that causes constipation the next day or two; it has become a balancing act to take the right pills at the right time. He has a couple of good days a week when he feels like getting out and doing things. Medically this is minor, but does affect his comfort and our lifestyle.
Last Tuesday we went to Denver for the Zometa infusion, Velcade injection, and visit with the myeloma specialist. Doug's weekly labs have been within normal limits. Doug asked him if the Velcade dosage could be reduced; the specialist does not want to do that; he wants to keep hitting the myeloma pretty heavily until the light chains go down enough to get him back into remission. At that point the Velcade dose would be reduced to a maintenance level. Doug is now into the third cycle of chemo. A blood draw was done for the myeloma panel - results will be a week or so.
The specialist recommended that Doug get acquainted with the new nephrologist, just so he will be familiar with Doug's history if any kidney problems arise again.
That's all the medical news. We haven't gone anywhere other than medical visits but we have been able to see friends.
On October 20 we went to Colorado Springs for Doug's yearly cardiology appointment. He had an EKG which showed evidence of his prior 'right bundle branch block' but no current problems, so nothing to worry about. He had a blood draw to check cholesterol; that is in the normal range.
Doug has had his CyBorD chemo every week. His GI side effects are getting more troublesome. The day after treatment the diarrhea starts and usually lasts two or even three days. Those days he stays home. Taking enough Immodium to deal with that causes constipation the next day or two; it has become a balancing act to take the right pills at the right time. He has a couple of good days a week when he feels like getting out and doing things. Medically this is minor, but does affect his comfort and our lifestyle.
Last Tuesday we went to Denver for the Zometa infusion, Velcade injection, and visit with the myeloma specialist. Doug's weekly labs have been within normal limits. Doug asked him if the Velcade dosage could be reduced; the specialist does not want to do that; he wants to keep hitting the myeloma pretty heavily until the light chains go down enough to get him back into remission. At that point the Velcade dose would be reduced to a maintenance level. Doug is now into the third cycle of chemo. A blood draw was done for the myeloma panel - results will be a week or so.
The specialist recommended that Doug get acquainted with the new nephrologist, just so he will be familiar with Doug's history if any kidney problems arise again.
That's all the medical news. We haven't gone anywhere other than medical visits but we have been able to see friends.
"Being happy doesn't mean everything is perfect. It means you've decided to see beyond the imperfections."
Wednesday, October 1, 2014
Weird Rash; More Side Effects
Last week, the day after the CyBorD treatment, Doug noticed a strange rash at the site of the Velcade injection. Having a rash from the Velcade is not unusual; what was strange was the appearance of the rash. There was a circular spot about three inches in circumference, and several "fingers" coming off the red area below it. Another narrow finger was coming up, toward Doug's chest, about eight inches or so. He didn't notice this until 9:00 in the evening, and he had no fever, the area was not raised or warm. So we didn't call the hospital, although I did check it during the night. In the morning it was much less red, and continued to fade during the day. I had taken a photo of it, and sent it in to the Denver specialist's office. The nurse emailed that it sure looked weird, and she sent it on to the doc. His opinion was that possibly the Velcade had gotten into the lymph system.
We also showed the photo to the chemo nurses in Salida today - they all agreed that it was "weird". No harm done.
Doug's blood counts were good today; within limits to proceed with the treatment. It went fast today - we were at the infusion center only a little over an hour. The weekly blood draw doesn't tell if the treatment is effective; it is done to see if his body is tolerating the chemo, judging by the blood counts.
Once a month the blood is sent off to a special lab. This test is called the "MM panel" and the results show if the bad myeloma cells (light chains) are going up or down. The lambda light chains have been going up every month for the last ten months. Last month's test showed a slight reduction! This is very encouraging and we hope for a steady decline in those light chains.
Meanwhile Doug has been experiencing more side effects. The chemo is hitting his GI tract now; he has diarrhea and sometimes constipation. The Zofran is still preventing nausea. This is not unusual for this type of chemo. More pills to prevent and cope with side effects! He won't sleep well for a couple of nights after the Dex, even with a sleeping pill. But his attitude is good.
My sister was here for a week's visit. We went to a women's retreat for three days. We had a great time and Doug enjoyed peace and quiet from our girl talk. While Carol was here we all got together with our son and daughter in law for quality family time together.
Love to all.
We also showed the photo to the chemo nurses in Salida today - they all agreed that it was "weird". No harm done.
Doug's blood counts were good today; within limits to proceed with the treatment. It went fast today - we were at the infusion center only a little over an hour. The weekly blood draw doesn't tell if the treatment is effective; it is done to see if his body is tolerating the chemo, judging by the blood counts.
Once a month the blood is sent off to a special lab. This test is called the "MM panel" and the results show if the bad myeloma cells (light chains) are going up or down. The lambda light chains have been going up every month for the last ten months. Last month's test showed a slight reduction! This is very encouraging and we hope for a steady decline in those light chains.
Meanwhile Doug has been experiencing more side effects. The chemo is hitting his GI tract now; he has diarrhea and sometimes constipation. The Zofran is still preventing nausea. This is not unusual for this type of chemo. More pills to prevent and cope with side effects! He won't sleep well for a couple of nights after the Dex, even with a sleeping pill. But his attitude is good.
My sister was here for a week's visit. We went to a women's retreat for three days. We had a great time and Doug enjoyed peace and quiet from our girl talk. While Carol was here we all got together with our son and daughter in law for quality family time together.
Love to all.
"God uses everything to call us out of apathy." Ann Voskamp
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