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
Wednesday, September 17, 2014
The Lymph Node That Wasn't?
Yesterday we went to Denver to the MM specialist office. Our doc M was out on vacation, on a bicycle trip in Spain. He works hard and plays hard. We're glad he takes good vacations; it keeps him fresh and enthusiastic in his work. We saw Megan, his nurse practioner, who has worked with our doc for ten years and is excellent.
In addition to getting his chemo and Zometa, we got a lot of questions answered.
August 25 of this year, Doug had a neck lump removed and sent to pathology. We knew it was full of myeloma but hadn't been explained to us. The specimen was sent to three different labs. When we first noticed the lump in Doug's neck, we thought it was a lymph node. So did the ENT doc who did the excisional (removed the whole thing vs. taking a small sample) biopsy. It was labeled "cervical neck lymph node" when it went to the path lab.
Yesterday Megan said that it probably wasn't a lymph node after all since the pathology showed none of the typical architecture of a lymph node.
It is easy to understand how the first two docs (not myeloma specialists) who looked at it assumed it was a lymph node by location.
Megan said there is no way to prove it now, but it most likely was a plasmacytoma. Since it was outside of the bones, this would have been an extramedullary plasmacytoma.
I've done a little reading on this, and it seems from 6 to 20% of relapsed patients develop extramedullary plasmacytomas.
Megan said this will not change Doug's treatment. He probably will have another PET/CT scan in six months.
People have asked us how long Doug will have to stay on this treatment regimen. Megan explained that treatment is "to maximum response". Doug will continue on this as long as: 1, the cancer numbers continue to improve, and 2, he can tolerate the treatment. Megan said this is usually six to eight cycles. A cycle is four weeks, so this means six to eight months unless something happens before then. Once the cancer numbers fall back enough, Doug would still need to be on maintenance treatment at a lower dose. Or change to different drugs if the current treatment isn't working.
Doug hasn't been sleeping very well, so he got a new prescription for a different sleeping pill. He will try Trazodone; it was originally an anti-depressant but is used mostly for sleep now.
Doug hasn't been sick to his stomach due to the anti-nausea pills. But he is starting to feel more tired. His left knee has really been hurting the last few days. I think he overdid it on the new exercise bike and aggravated the knee. It is slowly starting to feel better. We really want to avoid surgery on the knee; if surgery of any kind would become necessary, he would have to go off the chemo for several weeks. Megan said the dex inhibits healing.
That's all I know for now. Yesterday was a good day but long and tiring; 9 hours door to door. Our lovely neighbor came over and let the dogs out twice.
One day at a time and counting our blessings.
In addition to getting his chemo and Zometa, we got a lot of questions answered.
August 25 of this year, Doug had a neck lump removed and sent to pathology. We knew it was full of myeloma but hadn't been explained to us. The specimen was sent to three different labs. When we first noticed the lump in Doug's neck, we thought it was a lymph node. So did the ENT doc who did the excisional (removed the whole thing vs. taking a small sample) biopsy. It was labeled "cervical neck lymph node" when it went to the path lab.
Yesterday Megan said that it probably wasn't a lymph node after all since the pathology showed none of the typical architecture of a lymph node.
It is easy to understand how the first two docs (not myeloma specialists) who looked at it assumed it was a lymph node by location.
Megan said there is no way to prove it now, but it most likely was a plasmacytoma. Since it was outside of the bones, this would have been an extramedullary plasmacytoma.
I've done a little reading on this, and it seems from 6 to 20% of relapsed patients develop extramedullary plasmacytomas.
Megan said this will not change Doug's treatment. He probably will have another PET/CT scan in six months.
People have asked us how long Doug will have to stay on this treatment regimen. Megan explained that treatment is "to maximum response". Doug will continue on this as long as: 1, the cancer numbers continue to improve, and 2, he can tolerate the treatment. Megan said this is usually six to eight cycles. A cycle is four weeks, so this means six to eight months unless something happens before then. Once the cancer numbers fall back enough, Doug would still need to be on maintenance treatment at a lower dose. Or change to different drugs if the current treatment isn't working.
Doug hasn't been sleeping very well, so he got a new prescription for a different sleeping pill. He will try Trazodone; it was originally an anti-depressant but is used mostly for sleep now.
Doug hasn't been sick to his stomach due to the anti-nausea pills. But he is starting to feel more tired. His left knee has really been hurting the last few days. I think he overdid it on the new exercise bike and aggravated the knee. It is slowly starting to feel better. We really want to avoid surgery on the knee; if surgery of any kind would become necessary, he would have to go off the chemo for several weeks. Megan said the dex inhibits healing.
That's all I know for now. Yesterday was a good day but long and tiring; 9 hours door to door. Our lovely neighbor came over and let the dogs out twice.
One day at a time and counting our blessings.
"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
Wednesday, September 10, 2014
2nd CyBorD tx
Yesterday was Doug's second CyBorD treatment, in Salida. In one week, his platelets went from 236 to 209. That is still a good number, but it surprised me a bit to see that much change. His other counts barely budged. This time the whole process took only 1.5 hours. He felt pretty good afterward, but due to the dex, his appetite was big - he wanted to eat everything in sight.
We have had company lately. Last week a couple from our RV days stopped in town to see us. They are still full time RVers and have been traveling all summer. It was great to see Margie and Edmund. Last Saturday and Sunday we got to visit with another RV friend. Shari is a single gal who has been full timing for 12 years. She parked her rig in our driveway and we shared memories of the good old days. We are very glad to be settled in Buena Vista but we sure did enjoy those RV days.
My sister will come visit toward the end of the month, from TN.
Yesterday and today we have been making applesauce. We got a whole bunch of apples from a friend's trees. This morning after peeling more apples, Doug got a pretty bad cramp in his hand. The cramp has been bothering him off and on all day. The only thing that helps is a heating pad. We are wondering if the cramp is connected to his chemo, but we don't know.
We have another project too. The recumbent exercise bike we ordered finally came - in about a thousand pieces. We have been putting it together and will finish tomorrow.
Next week we go to Denver for the chemo and a Zometa infusion. We have some questions for the specialist. We found out that the lymph node in Doug's neck is in fact myeloma. I think it is pretty unusual for myeloma to go to lymph nodes; I can't find mention of it. We need to know what is the significance of this.
We can see the fall colors begin on the mountains - bright yellow aspens against the dark green pines. Just beautiful.
Love to all.
We have had company lately. Last week a couple from our RV days stopped in town to see us. They are still full time RVers and have been traveling all summer. It was great to see Margie and Edmund. Last Saturday and Sunday we got to visit with another RV friend. Shari is a single gal who has been full timing for 12 years. She parked her rig in our driveway and we shared memories of the good old days. We are very glad to be settled in Buena Vista but we sure did enjoy those RV days.
My sister will come visit toward the end of the month, from TN.
Yesterday and today we have been making applesauce. We got a whole bunch of apples from a friend's trees. This morning after peeling more apples, Doug got a pretty bad cramp in his hand. The cramp has been bothering him off and on all day. The only thing that helps is a heating pad. We are wondering if the cramp is connected to his chemo, but we don't know.
We have another project too. The recumbent exercise bike we ordered finally came - in about a thousand pieces. We have been putting it together and will finish tomorrow.
Next week we go to Denver for the chemo and a Zometa infusion. We have some questions for the specialist. We found out that the lymph node in Doug's neck is in fact myeloma. I think it is pretty unusual for myeloma to go to lymph nodes; I can't find mention of it. We need to know what is the significance of this.
We can see the fall colors begin on the mountains - bright yellow aspens against the dark green pines. Just beautiful.
Love to all.
"Fulfillment cannot be attained by seeking and grasping, but by surrendering and breathing right now, in the present." Karen M. Wyatt, M.D.
Tuesday, September 2, 2014
First CyBorD Tx
Today was Doug's first CyBorD treatment, in Salida Heart of the Rockies Med Center.
First his vital signs were taken: blood pressure, temperature, blood oxygen saturation, pulse.
Then a blood draw and wait for lab results. The parameters for treatment to proceed are ANC (absolute neutrophil count, a type of white blood cell) 1.0 or better; platelets 75,000 or better; hemoglobin 8.0 or better. Doug's counts are good since he has been off treatment for a while, but that may change.
After the blood counts were approved, the next step was for Doug to take Zofran, an anti-nausea pill - to prevent him from throwing up all the expensive pills. Then he took 10 dexamethasone pills and had to wait 20 minutes before taking 12 Cytoxan capsules. Then the nurse injected the Velcade into his abdominal fat, about two inches to the side of his navel. This is called a subcutaneous, or SQ, injection. Each medication had to be checked by two nurses to make sure he took the correct drugs, and the time logged in.
Two hours, 23 pills and one shot later, we were free to go home.
Doug felt fairly good afterward. Praise the Lord! He ate a good supper but took another Zofran at 7:00 pm when he felt slightly nauseated.
If he can't sleep tonight, we have a pill for that too!
Love to all.
First his vital signs were taken: blood pressure, temperature, blood oxygen saturation, pulse.
Then a blood draw and wait for lab results. The parameters for treatment to proceed are ANC (absolute neutrophil count, a type of white blood cell) 1.0 or better; platelets 75,000 or better; hemoglobin 8.0 or better. Doug's counts are good since he has been off treatment for a while, but that may change.
After the blood counts were approved, the next step was for Doug to take Zofran, an anti-nausea pill - to prevent him from throwing up all the expensive pills. Then he took 10 dexamethasone pills and had to wait 20 minutes before taking 12 Cytoxan capsules. Then the nurse injected the Velcade into his abdominal fat, about two inches to the side of his navel. This is called a subcutaneous, or SQ, injection. Each medication had to be checked by two nurses to make sure he took the correct drugs, and the time logged in.
Two hours, 23 pills and one shot later, we were free to go home.
Doug felt fairly good afterward. Praise the Lord! He ate a good supper but took another Zofran at 7:00 pm when he felt slightly nauseated.
If he can't sleep tonight, we have a pill for that too!
Love to all.
"Each of us is merely a small instrument; all of us, after accomplishing our mission will disappear." Mother Teresa
Monday, August 25, 2014
Neck Node Removed; Chemo Postponed
Today we went to the office of Dr. P, an ENT physician in Salida. He removed the enlarged cervical node from Doug's neck, about an inch below his ear. It was done with local anesthetic; Doug said he could feel tugging but no pain during. Now that the local has worn off, Doug is taking his pain meds! Dr P said he had to go deeper than he initially thought, so he put in a drain. It is draining quite a bit, which is good. I am okay with doing dressing changes at home. We had some sterile 4 x 4's. Getting the gauze to stick to the side of the neck on a man who has a beard is a challenge. The nurse at the office used lots of tape which was difficult to get off; I did have to cut some hair. Not only did we have sterile gauze, but I found some Co-flex - the stuff that sticks to itself but not skin or hair. So I wrapped that all the way around Doug's neck and it worked great.
Dr P also started Doug on a two week course of antibiotics to prevent infection. We go back this Wednesday to get the drain out.
Dr P talked to Dr M, the local oncologist and together they decided to postpone Doug's first CyBorD treatment a week. So that will be September 2.
The hard part for me is waiting to get the biopsy report back. It will be at least a week. This stretch of our myeloma journey has some potholes!
We have many people praying for us, and that means so much.
Love to all.
"God is our refuge and strength, a very present help in trouble." Psalm 46:1
Dr P also started Doug on a two week course of antibiotics to prevent infection. We go back this Wednesday to get the drain out.
Dr P talked to Dr M, the local oncologist and together they decided to postpone Doug's first CyBorD treatment a week. So that will be September 2.
The hard part for me is waiting to get the biopsy report back. It will be at least a week. This stretch of our myeloma journey has some potholes!
We have many people praying for us, and that means so much.
Love to all.
"God is our refuge and strength, a very present help in trouble." Psalm 46:1
Thursday, August 21, 2014
Meeting Salida oncologist
Yesterday we met the local (40 minutes away) oncologist. She had Doug's file from our Denver specialist but she asked lots of personal background questions, including Doug's activity level.
Because of arthritis in his knees, Doug has not been walking much; about two blocks is all he can do before his knees hurt a lot. Dr FM said Doug needs to do some kind of regular exercise to maintain his strength, especially since he will be taking a lot of dexamethasone which can lead to muscle loss. She recommended he lift some light weights (I have already tried to get him to do this) and think about getting a recumbent stationary exercise bike.
The doc also recommended Doug start taking vitamin D-3.
Doug has a neck node below his left ear. We are not sure how long it's been there. We forgot to have the Denver specialist look at it. Dr. FM wants to know what it is. (Myeloma does not go to the nodes.) So she is referring Doug to an ENT doc for biopsy. We got a phone call from the ENT office asking us to come in this afternoon, so we did. That doc felt the node and has scheduled Doug for an excisional biopsy Monday morning, to be done with local anesthesia.
The CyBorD treatments are set to start on Tuesday at the regional med center near us.
Lots is happening quickly now. We are glad to get action; it is much better than waiting.
Because of arthritis in his knees, Doug has not been walking much; about two blocks is all he can do before his knees hurt a lot. Dr FM said Doug needs to do some kind of regular exercise to maintain his strength, especially since he will be taking a lot of dexamethasone which can lead to muscle loss. She recommended he lift some light weights (I have already tried to get him to do this) and think about getting a recumbent stationary exercise bike.
The doc also recommended Doug start taking vitamin D-3.
Doug has a neck node below his left ear. We are not sure how long it's been there. We forgot to have the Denver specialist look at it. Dr. FM wants to know what it is. (Myeloma does not go to the nodes.) So she is referring Doug to an ENT doc for biopsy. We got a phone call from the ENT office asking us to come in this afternoon, so we did. That doc felt the node and has scheduled Doug for an excisional biopsy Monday morning, to be done with local anesthesia.
The CyBorD treatments are set to start on Tuesday at the regional med center near us.
Lots is happening quickly now. We are glad to get action; it is much better than waiting.
Tuesday, August 12, 2014
CyBorD Decision
Yesterday we had our appointment with Dr. M, the myeloma specialist in Denver. After talking to him Doug decided not to take part in the clinical trial. It is important right now to get going on a chemo regimen. Before joining a clinical trial, there is a period of testing to ascertain the patient's status. Dr. M explained that even if Doug chooses another course right now, he would still be eligible for the clinical trial in the future, if the current drug stops working.
Revlimid was an excellent drug for Doug since 2008 - until it stopped being effective.
Dr M feels that CyBorD is a good choice for Doug. It is a combo of three drugs: Cytoxan, Velcade (generic name bortezomib), and Dexamethasone. This has been proven to be an effective treatment regimen in relapsed patients.
For those of you who don't want to read the technical stuff, skip this part.
Cytoxan is a synthetic antineoplastic (anti-cancer) drug chemically related to nitrogen mustard. Nitrogen mustard was used as a chemical weapon in WWI. Nausea and vomiting are common side effects.
Velcade is the first in a class of drugs called proteasome inhibitors. It can be used alone or as part of a multi-drug regimen. It causes myeloma cells to stop dividing. It comes as a powder which is reconstituted before it is administered by either IV or a subcutaneous injection. A common side effect is peripheral neuropathy (PN). PN is numbness and tingling in hands and feet due to nerve damage. It can range from mild tingling to pain in hands, feet, legs, and/or arms. Fatigue can also be a side effect, as can nausea, diarrhea, and a raft of other things.
Dexamethasone (dex) is a powerful corticosteroid. It can help relieve some of the side effects of the other drugs as well as having cancer fighting properties of its own. Common side effects are insomnia and restlessness.
The CyBorD will be given once a week. The Velcade will be given as a shot in the abdomen or thigh. The Cytoxan and Dex are pills taken by mouth. Once a month we will go to Denver; the other three weeks we will go to our regional hospital 30 minutes away from home. Doug has also been prescribed an antiemetic for nausea. And he will resume Zometa, the bone strengthener, once a month. He will also be given Acylovir, an antiviral drug, to prevent shingles.
Before the CyBorD can start, we need to get an appointment with the oncologist at the regional hospital. She will need to meet us and become familiar with Doug's history. Hopefully that will happen soon.
For both me and Doug, there is a feeling of "Here we go again". We don't know exactly how Doug will react but we hope for minimal side effects. Yesterday I was feeling a little low and sad. Then I had a "vision" of me sitting in Jesus' lap, and a comfort came over me. The Lord is our refuge.
Love to all.
Come to me, all you who are weary and heavy laden, and I will give you rest. Matthew 11:28
Revlimid was an excellent drug for Doug since 2008 - until it stopped being effective.
Dr M feels that CyBorD is a good choice for Doug. It is a combo of three drugs: Cytoxan, Velcade (generic name bortezomib), and Dexamethasone. This has been proven to be an effective treatment regimen in relapsed patients.
For those of you who don't want to read the technical stuff, skip this part.
Cytoxan is a synthetic antineoplastic (anti-cancer) drug chemically related to nitrogen mustard. Nitrogen mustard was used as a chemical weapon in WWI. Nausea and vomiting are common side effects.
Velcade is the first in a class of drugs called proteasome inhibitors. It can be used alone or as part of a multi-drug regimen. It causes myeloma cells to stop dividing. It comes as a powder which is reconstituted before it is administered by either IV or a subcutaneous injection. A common side effect is peripheral neuropathy (PN). PN is numbness and tingling in hands and feet due to nerve damage. It can range from mild tingling to pain in hands, feet, legs, and/or arms. Fatigue can also be a side effect, as can nausea, diarrhea, and a raft of other things.
Dexamethasone (dex) is a powerful corticosteroid. It can help relieve some of the side effects of the other drugs as well as having cancer fighting properties of its own. Common side effects are insomnia and restlessness.
The CyBorD will be given once a week. The Velcade will be given as a shot in the abdomen or thigh. The Cytoxan and Dex are pills taken by mouth. Once a month we will go to Denver; the other three weeks we will go to our regional hospital 30 minutes away from home. Doug has also been prescribed an antiemetic for nausea. And he will resume Zometa, the bone strengthener, once a month. He will also be given Acylovir, an antiviral drug, to prevent shingles.
Before the CyBorD can start, we need to get an appointment with the oncologist at the regional hospital. She will need to meet us and become familiar with Doug's history. Hopefully that will happen soon.
For both me and Doug, there is a feeling of "Here we go again". We don't know exactly how Doug will react but we hope for minimal side effects. Yesterday I was feeling a little low and sad. Then I had a "vision" of me sitting in Jesus' lap, and a comfort came over me. The Lord is our refuge.
Love to all.
Come to me, all you who are weary and heavy laden, and I will give you rest. Matthew 11:28
Friday, August 8, 2014
Get to see specialist early
We got a phone call today from the Denver myeloma specialist's scheduler. The doc wants to see Doug this Monday instead of August 20. This is good news; the sooner we get him started on an effective drug the better. We are being squeezed into the schedule; there are no openings. So we were offered 7:30 a.m. before the first patient of the day, or 4:30 after the last one. We took the early time. As the day runs on, chances are the doc will get behind schedule. He spends as much time as needed with each patient, to answer all questions. And Denver evening traffic rush is no fun either. So we will leave Buena Vista at 4:30 a.m.
Doug is doing pretty well with his broken rib. But he sneezed tonight and I could tell it really hurt.
Love to all.
Doug is doing pretty well with his broken rib. But he sneezed tonight and I could tell it really hurt.
Love to all.
I lie awake thinking of You, meditating on You through the night. I think how much you have helped me; I sing for joy in the shadow of your protecting wings. I follow close behind you; your strong right hand holds me securely. Psalm 63:6-8
Tuesday, August 5, 2014
Another Broken Rib; Clinical Trial?
Doug has evidently broken another rib. He didn't tell me right away. He says the pain was manageable until he sneezed this evening. Then it got bad enough for him to take a percoset, and he doesn't like to take pain meds.
There is nothing to be done for a broken rib except to rest. But I did report it to the nurse navigator.
Doug is eligible for a clinical trial. The nurse in charge of the trial paperwork emailed us 12 pages of detail. The drug is Oprozomib and it is a phase 2 trial to test safety and effectiveness at different doses. Doug has not decided if he will participate; we would need to stay in Denver for close monitoring for weeks. We don't know yet if hotel and travel expenses would be paid. And we would need to board the dogs at a kennel. We will discuss this August 20th when Doug has his appointment with the specialist.
There is nothing to be done for a broken rib except to rest. But I did report it to the nurse navigator.
Doug is eligible for a clinical trial. The nurse in charge of the trial paperwork emailed us 12 pages of detail. The drug is Oprozomib and it is a phase 2 trial to test safety and effectiveness at different doses. Doug has not decided if he will participate; we would need to stay in Denver for close monitoring for weeks. We don't know yet if hotel and travel expenses would be paid. And we would need to board the dogs at a kennel. We will discuss this August 20th when Doug has his appointment with the specialist.
Saturday, July 26, 2014
Bone Lesions and Neck Node
We finally got the formal written results of Doug's PET scan that was done on July 1. There was a delay in getting the previous PET scan for comparison. There are new bone lesions in the left mastoid, right sternoclavicular joint, right anterior 2nd rib, right 7th rib, distal right and left humeri.
Plus a 1.8 x 1.3 cm cervical lymph node on the left side of his neck. We knew it was there.
We knew from the rising blood markers there was something going on, but we didn't know the extent of the new bone lesions. We feel very fortunate that Doug is not having any pain.
Now that there is proof of a CRAB symptom the specialist will finally put Doug on a new drug combo. We don't see the Denver specialist until Aug 20. Meanwhile Doug is busy getting chores done while he still feels good.
This part of the myeloma journey is still a relatively smooth road, although we can see storm clouds ahead.
We went on a beautiful mountain drive a few days ago with friends. Saw lots of very pretty wildflowers, spotted a marmot sunning himself on a rock but weren't able to get a good photo. We stopped for lunch at the Mango cafe in the tiny town of Red Cliff. Very good quesadillas and hamburgers. We went over Shrine pass. The road was a bit rough but the views made it worth the drive. Great day.
My ankle is doing well. I have an excellent physical therapist who is really putting me through the hoops. I think my PT will be finished soon.
Love to all.
Plus a 1.8 x 1.3 cm cervical lymph node on the left side of his neck. We knew it was there.
We knew from the rising blood markers there was something going on, but we didn't know the extent of the new bone lesions. We feel very fortunate that Doug is not having any pain.
Now that there is proof of a CRAB symptom the specialist will finally put Doug on a new drug combo. We don't see the Denver specialist until Aug 20. Meanwhile Doug is busy getting chores done while he still feels good.
This part of the myeloma journey is still a relatively smooth road, although we can see storm clouds ahead.
We went on a beautiful mountain drive a few days ago with friends. Saw lots of very pretty wildflowers, spotted a marmot sunning himself on a rock but weren't able to get a good photo. We stopped for lunch at the Mango cafe in the tiny town of Red Cliff. Very good quesadillas and hamburgers. We went over Shrine pass. The road was a bit rough but the views made it worth the drive. Great day.
My ankle is doing well. I have an excellent physical therapist who is really putting me through the hoops. I think my PT will be finished soon.
Love to all.
Monday, July 14, 2014
New Bone Lesions - Relapse # 2
We got a phone call today from the myeloma specialist's nurse navigator. The PET scan shows increased activity, which means there are new bone lesions. This is pretty much what we suspected, so its no shock. But it is Doug's second relapse.
Doug is to stay on Revlimid for now, but there will be a drug therapy change the next time we see the specialist. We have been prepared for that. Doug has an appointment for August 20.
Doug's rib pain is much less now. He feels pretty good and has been doing a lot around the house, like cleaning out the garage and pressure washing the deck in preparation for staining it. I think he is trying to get as much done as he can, since he may not feel like it when the new side effects hit. He has also been volunteering on our church's building maintenance committee.
It took two weeks to get the PET scan results; we were not surprised as we know there is usually a communication problem between two different hospital systems. The scan was done at our local clinic. Results were delayed in getting to the specialist. We think we know where the problem lies, but it was worth it to avoid another trip into Denver to get the scan done there. The radiologists in Denver review and compare the new scan to the older one, so we are not dependent on the local radiologist's expertise (or lack of).
There has been a development on the nephrology front. The clinic in Fairplay abruptly closed with no advance warning to the physician, staff or patients. One day they were in business, the next day computers and furniture were being moved out. The physician, who was Doug's nephrologist, did not even get access to her patient records. In our opinion, the clinic owners, who own a chain of clinics, acted in a horribly unprofessional manner. The physician put a notice in the Fairplay newspaper, stating that she would like to continue providing care to her patients but has no way to handle insurance, no building, and cannot open a private practice due to her own health concerns. She did give a phone number to contact the clinic owners to obtain our records. We have done so.
We have a lead on a nephrologist who is to start practicing locally; we hope that works out. If we like him it would be nice to avoid the big city.
Fortunately Doug's kidney disease has been stable so he doesn't need a nephrologist immediately.
My ankle is healing nicely from the torn ligament. Having the cast off is a huge relief! I am going to physical therapy and strengthening the ankle and starting to get flexibility back. I am gradually able to resume my activities.
We are living in the moment, enjoying our friends and family and our two little dogs. We know that whatever is ahead, we are held in God's hands.
Love to all.
I will protect those who trust in my name. When they call on me, I will answer; I will be with them and honor them. Psalm 91:14-15
Doug is to stay on Revlimid for now, but there will be a drug therapy change the next time we see the specialist. We have been prepared for that. Doug has an appointment for August 20.
Doug's rib pain is much less now. He feels pretty good and has been doing a lot around the house, like cleaning out the garage and pressure washing the deck in preparation for staining it. I think he is trying to get as much done as he can, since he may not feel like it when the new side effects hit. He has also been volunteering on our church's building maintenance committee.
It took two weeks to get the PET scan results; we were not surprised as we know there is usually a communication problem between two different hospital systems. The scan was done at our local clinic. Results were delayed in getting to the specialist. We think we know where the problem lies, but it was worth it to avoid another trip into Denver to get the scan done there. The radiologists in Denver review and compare the new scan to the older one, so we are not dependent on the local radiologist's expertise (or lack of).
There has been a development on the nephrology front. The clinic in Fairplay abruptly closed with no advance warning to the physician, staff or patients. One day they were in business, the next day computers and furniture were being moved out. The physician, who was Doug's nephrologist, did not even get access to her patient records. In our opinion, the clinic owners, who own a chain of clinics, acted in a horribly unprofessional manner. The physician put a notice in the Fairplay newspaper, stating that she would like to continue providing care to her patients but has no way to handle insurance, no building, and cannot open a private practice due to her own health concerns. She did give a phone number to contact the clinic owners to obtain our records. We have done so.
We have a lead on a nephrologist who is to start practicing locally; we hope that works out. If we like him it would be nice to avoid the big city.
Fortunately Doug's kidney disease has been stable so he doesn't need a nephrologist immediately.
My ankle is healing nicely from the torn ligament. Having the cast off is a huge relief! I am going to physical therapy and strengthening the ankle and starting to get flexibility back. I am gradually able to resume my activities.
We are living in the moment, enjoying our friends and family and our two little dogs. We know that whatever is ahead, we are held in God's hands.
Love to all.
I will protect those who trust in my name. When they call on me, I will answer; I will be with them and honor them. Psalm 91:14-15
Sunday, June 22, 2014
No drug change yet - No CRAB symptoms yet
We saw the Denver myeloma specialist last Thursday. We had thought he would change Doug to a different drug because of the steady rise in light chains. But he said "not yet". He said that despite the light chains rising, Doug has no CRAB symptoms as of now.
C = calcium (high blood calcium)
R = renal failure. Although Doug has kidney disease, his kidneys are still able to do the job of filtering.
A = anemia
B = bone. This would mean new bone lesions, not the existing ones.
The specialist ordered a PET/CT scan to check for any new bone lesions. This is scheduled for July 1.
The specialist (we like and trust his judgement) said the standard is to not change treatment until myeloma symptoms are present.
So although Doug's blood work is not normal, it is not considered all that bad (yet).
Our Myeloma Journey road is fairly smooth right now. We know there are some twists and turns up ahead but we don't know when.
We see the specialist again in two months.
Doug thinks he fractured a rib last Friday (after we got home from the Dr. visit). It hurts a lot when he coughs or laughs but he says it is otherwise tolerable pain. This could be a bone already weakened by an old lesion; we will see.
His leg swelling is a bit worse. We did get some compression stockings but so far he refuses to wear them. Sigh.
It is good to hear that Doug is semi-normal for now. We know the MM will progress but we are not in a hurry for him to start a drug that probably has more side effects than the Revlimid.
Doug has actually been doing a lot for me lately. I twisted my right ankle May 23rd and tore a ligament. I have a cast from below the knee to my toes. It is a 'walking cast' but makes for slow difficult hobbling around. I got two pretty bad blisters on my good foot, which are slow to heal. Last week I finally got fitted with the proper heel lift for my left shoe; that helps my back. My sweet husband/chauffeur is the best help of all.
Love to all.
"For fast-acting relief try slowing down." Lily Tomlin
C = calcium (high blood calcium)
R = renal failure. Although Doug has kidney disease, his kidneys are still able to do the job of filtering.
A = anemia
B = bone. This would mean new bone lesions, not the existing ones.
The specialist ordered a PET/CT scan to check for any new bone lesions. This is scheduled for July 1.
The specialist (we like and trust his judgement) said the standard is to not change treatment until myeloma symptoms are present.
So although Doug's blood work is not normal, it is not considered all that bad (yet).
Our Myeloma Journey road is fairly smooth right now. We know there are some twists and turns up ahead but we don't know when.
We see the specialist again in two months.
Doug thinks he fractured a rib last Friday (after we got home from the Dr. visit). It hurts a lot when he coughs or laughs but he says it is otherwise tolerable pain. This could be a bone already weakened by an old lesion; we will see.
His leg swelling is a bit worse. We did get some compression stockings but so far he refuses to wear them. Sigh.
It is good to hear that Doug is semi-normal for now. We know the MM will progress but we are not in a hurry for him to start a drug that probably has more side effects than the Revlimid.
Doug has actually been doing a lot for me lately. I twisted my right ankle May 23rd and tore a ligament. I have a cast from below the knee to my toes. It is a 'walking cast' but makes for slow difficult hobbling around. I got two pretty bad blisters on my good foot, which are slow to heal. Last week I finally got fitted with the proper heel lift for my left shoe; that helps my back. My sweet husband/chauffeur is the best help of all.
Love to all.
"For fast-acting relief try slowing down." Lily Tomlin
Wednesday, May 14, 2014
Kidney disease stable
Doug saw Dr F, the nephrologist, today. The lab work shows he is stable - nothing got worse. In fact there has been a slight drop in the protein in urine. His ankle swelling is a bit worse on the left side but not severe. So that is a good report.
We really like Dr. F. Not only is she a well respected kidney doc but she refuses to play the corporate game of scheduling a patient every 15 minutes. She is so well established in the community that she can get away with being a bit of a maverick. For new consults she schedules 90 minutes. That was pretty standard when I started out in the medical world but sadly is rare now. And she is down to earth. Her hobby is taking care of her rescued burros!
Dr. F says the new chemo regime that Dr. M discussed at the last oncology visit will not hurt the kidneys and would probably be a good thing. We'll find our more about that next month.
We have a new addition to the family - two dogs! We had been without dogs for four years, after many years of multiple dogs and dog activities. We now have two Havanese, male and female, from Havanese rescue. Their owner was unable to keep them due to severe illness, so we adopted them. Pippa and Nikko are three years old, happy little dogs, quiet (unless someone comes to the door), playful, and best of all, no house training issues!
I still can't get a photo from my iMac to this blog. Phooey.
We really like Dr. F. Not only is she a well respected kidney doc but she refuses to play the corporate game of scheduling a patient every 15 minutes. She is so well established in the community that she can get away with being a bit of a maverick. For new consults she schedules 90 minutes. That was pretty standard when I started out in the medical world but sadly is rare now. And she is down to earth. Her hobby is taking care of her rescued burros!
Dr. F says the new chemo regime that Dr. M discussed at the last oncology visit will not hurt the kidneys and would probably be a good thing. We'll find our more about that next month.
We have a new addition to the family - two dogs! We had been without dogs for four years, after many years of multiple dogs and dog activities. We now have two Havanese, male and female, from Havanese rescue. Their owner was unable to keep them due to severe illness, so we adopted them. Pippa and Nikko are three years old, happy little dogs, quiet (unless someone comes to the door), playful, and best of all, no house training issues!
I still can't get a photo from my iMac to this blog. Phooey.
“If you don’t like something change it; if you can’t change it, change the way you think about it” — Mary Engelbreit
Friday, April 25, 2014
Light Chains Rising again
We had Doug's appointment with the myeloma specialist. His light chains have been steadily rising for the past few months, although they are not truly alarming yet. In February his Lambda light chains were 150; now they are 197. The Kappa/Lambda ratio is low at .14. The last time Doug relapsed his light chains got up to 830.
Dr. M said this could be a first sign that the Revlimid might not be holding the cancer back. He is not going to change anything yet, but will keep a close eye out. Doug will get labs in two months before the next appointment. Dr. M did say Doug might need to change to a different drug.
This is not welcome news but not surprising. Revlimid has worked well for five and a half years, holding Doug in remission. We have always known that at some point the cancer would outsmart the drug. The most likely next drug would be CyborD, which is a three drug combo. We'll wait and see.
Meanwhile Doug has been doing very well. Aside from knee pain and some digestion trouble, he feels good. We are planning our part in our church's Vacation Bible School again this year.
Spring is coming to our mountain valley in fits and spurts. We've had some beautiful days, and some chilly days. Still plenty of snow on the mountain tops. Beautiful.
We are so thankful to God our Father for each day He gives us.
Dr. M said this could be a first sign that the Revlimid might not be holding the cancer back. He is not going to change anything yet, but will keep a close eye out. Doug will get labs in two months before the next appointment. Dr. M did say Doug might need to change to a different drug.
This is not welcome news but not surprising. Revlimid has worked well for five and a half years, holding Doug in remission. We have always known that at some point the cancer would outsmart the drug. The most likely next drug would be CyborD, which is a three drug combo. We'll wait and see.
Meanwhile Doug has been doing very well. Aside from knee pain and some digestion trouble, he feels good. We are planning our part in our church's Vacation Bible School again this year.
Spring is coming to our mountain valley in fits and spurts. We've had some beautiful days, and some chilly days. Still plenty of snow on the mountain tops. Beautiful.
We are so thankful to God our Father for each day He gives us.
Wednesday, March 12, 2014
Thankfulness for ordinary
Nothing special has been going on, just the ordinary business of living - for which we are so thankful. It is the crises of life that make us appreciate these ordinary days; nothing to be taken for granted.
Doug had a severe stiff neck and pain the past few days. For a day or two he was thinking the cancer had attacked his cervical vertebrae. I really didn't think so. Now his range of movement is much better and the pain is less. It is just an ordinary stiff neck from sleeping in the wrong position. What a glorious word: ordinary.
I have been following a lovely blog written by Kara, a courageous young mother of four small children. She has advanced cancer. The blog is Mundane Faithfulness. You can read the blog and subscribe by clicking here: mundanefaithfulness.com.
In today's post she has a prayer I want to quote:
"Thank you Jesus, thank you. I take hold of this peace with utter gratitude. It feels like such a gift. I'm not panicked, but only have moments, small moments of anxiety. You have met me this week, you have met my man, my children, my moments and waking hours. You have given me work to do today. You have given me thoughts to think and wonder to observe. You have been my companion, my constant companion. You hear my begging: help, oh help, please help. You have helped. This is the greatest gift of all. Peace. Meet me in that small room with peace. Help me to show that unexplainable peace to my doctor. Help me to extend him your peace when he meets the end of his options to save this young mama. Help him not to despair, or to think I'm despairing. Help him not to carry the tears that will come. Help us to love him. Thank you Jesus for all those that are in constant prayer. Thank you for sleep. Thank you."
What a beautiful compassionate thing, to pray for her doctor, that he won't despair when he can't save her life. I look forward to reading Kara's blog each day.
Thank you Jesus, for this ordinary day.
Love to all.
Doug had a severe stiff neck and pain the past few days. For a day or two he was thinking the cancer had attacked his cervical vertebrae. I really didn't think so. Now his range of movement is much better and the pain is less. It is just an ordinary stiff neck from sleeping in the wrong position. What a glorious word: ordinary.
I have been following a lovely blog written by Kara, a courageous young mother of four small children. She has advanced cancer. The blog is Mundane Faithfulness. You can read the blog and subscribe by clicking here: mundanefaithfulness.com.
In today's post she has a prayer I want to quote:
"Thank you Jesus, thank you. I take hold of this peace with utter gratitude. It feels like such a gift. I'm not panicked, but only have moments, small moments of anxiety. You have met me this week, you have met my man, my children, my moments and waking hours. You have given me work to do today. You have given me thoughts to think and wonder to observe. You have been my companion, my constant companion. You hear my begging: help, oh help, please help. You have helped. This is the greatest gift of all. Peace. Meet me in that small room with peace. Help me to show that unexplainable peace to my doctor. Help me to extend him your peace when he meets the end of his options to save this young mama. Help him not to despair, or to think I'm despairing. Help him not to carry the tears that will come. Help us to love him. Thank you Jesus for all those that are in constant prayer. Thank you for sleep. Thank you."
What a beautiful compassionate thing, to pray for her doctor, that he won't despair when he can't save her life. I look forward to reading Kara's blog each day.
Thank you Jesus, for this ordinary day.
Love to all.
Friday, February 21, 2014
Stable kidneys, MM still in remission
Last week Doug saw the myeloma specialist in Denver. The Lambda light chains keep rising: one month ago it was 138 mg/L. This time it was 151. Although that is high, the Kappa/Lambda ratio is .22 which is not too bad. So the specialist says the MM is still in remission; and the rising light chains are due to the kidney disease. He wants to keep seeing Doug every two months.
We saw the nephrologist last Wednesday in Fairplay. She thought Doug's blood counts were good, and the ankle swelling has not changed. The creatinine is up to 1.21 (last month was 1.10) but not bad yet. Serum albumin is low but tolerable for now. Since Doug is losing protein in his urine, his liver is working hard to keep the albumin (protein) level in his blood. The nephrologist explained that the liver also makes the clotting factor, so Doug is at risk for clots. The revlimid also carries a clot risk. She is satisfied that the low dose aspirin is adequate for now. On long drives compression stockings would be good. We don't plan on flying anywhere.
The protein/creatinine ratio is down just a hair, from 5131 last month to 5122. Since it has not risen, the nephrologist won't start him on Prograf yet. She wants to keep doing monthly lab work, and she wants to see Doug in three months. Unless the creatinine rises, in which case she might opt to see him sooner.
So overall, we are happy. Still in remission, and stable kidney disease. Doug looks and feels pretty good. His knee pain is much less. He did go to the orthopod who took x-rays of the knee; it showed arthritis. No treatment needed for now. These are good times.
Praise the Lord!
We saw the nephrologist last Wednesday in Fairplay. She thought Doug's blood counts were good, and the ankle swelling has not changed. The creatinine is up to 1.21 (last month was 1.10) but not bad yet. Serum albumin is low but tolerable for now. Since Doug is losing protein in his urine, his liver is working hard to keep the albumin (protein) level in his blood. The nephrologist explained that the liver also makes the clotting factor, so Doug is at risk for clots. The revlimid also carries a clot risk. She is satisfied that the low dose aspirin is adequate for now. On long drives compression stockings would be good. We don't plan on flying anywhere.
The protein/creatinine ratio is down just a hair, from 5131 last month to 5122. Since it has not risen, the nephrologist won't start him on Prograf yet. She wants to keep doing monthly lab work, and she wants to see Doug in three months. Unless the creatinine rises, in which case she might opt to see him sooner.
So overall, we are happy. Still in remission, and stable kidney disease. Doug looks and feels pretty good. His knee pain is much less. He did go to the orthopod who took x-rays of the knee; it showed arthritis. No treatment needed for now. These are good times.
Praise the Lord!
Saturday, January 25, 2014
No treatment for kidney disease (yet)
We saw the nephrologist on January 24. She looked over the last three months of lab data. Doug's kidney function is still good, despite the leaking of protein. His creatinine is within normal limits. She gave us this analogy: Compare the kidney to a bucket. The bucket has a hole in it and is leaking, but it still can be used to carry water. So far, his kidneys are doing the job of filtering the blood.
The marker the nephrologist is using is the protein/creatinine ratio in the urine. Normal limits are from 0 to 200. Here are Doug's numbers:
on 10-23-13 it was 4868
11-26-13 5653
12-26-13 5625
1-15-14 5131
She wants to wait one more month to see if there is a definite trend upwards before starting him on Prograf. Because his kidney function is okay, it buys us some waiting time. Right now, the only part of the blood lab work that is off is the low albumin level of the blood.
I like the way the nephrologist has of explaining things. I also like her decision to wait and see a definite trend before starting Doug on a drug that suppresses the immune system. Doug does have some ankle swelling; not good but not severe yet.
The only pain he is having right now is in his right knee. None of the previous scans show any MM involvement in that region; I really think that pain is due to arthritis. He can't take a lot of meds because of possible kidney damage, so he is taking Tylenol and using a heating pad and a cane at times. If it doesn't go away we might need to address that. One thing at a time please.
We continue to count our many blessings.
Love to all.
The marker the nephrologist is using is the protein/creatinine ratio in the urine. Normal limits are from 0 to 200. Here are Doug's numbers:
on 10-23-13 it was 4868
11-26-13 5653
12-26-13 5625
1-15-14 5131
She wants to wait one more month to see if there is a definite trend upwards before starting him on Prograf. Because his kidney function is okay, it buys us some waiting time. Right now, the only part of the blood lab work that is off is the low albumin level of the blood.
I like the way the nephrologist has of explaining things. I also like her decision to wait and see a definite trend before starting Doug on a drug that suppresses the immune system. Doug does have some ankle swelling; not good but not severe yet.
The only pain he is having right now is in his right knee. None of the previous scans show any MM involvement in that region; I really think that pain is due to arthritis. He can't take a lot of meds because of possible kidney damage, so he is taking Tylenol and using a heating pad and a cane at times. If it doesn't go away we might need to address that. One thing at a time please.
We continue to count our many blessings.
Love to all.
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