We saw Dr. M the myeloma specialist last Wednesday. Doug's Lambda light chains have been rising steadily the last three months and I was concerned. However, the Kappa/Lambda ratio although jumping around hovers near normal. Dr. M says not to worry right now about the rising light chains. He says the Lambda light chains are sensitive to kidney issues, so some fluctuations can be expected. If the light chains go to 500 he might start to worry. The latest number is 123.17 mg/L. So he says the MM is still in remission!
Doug's creatinine is 1.16, ANC is 1.8, both good numbers for him. Total protein is high at 154.9 mg/dL but it came down from the month before. Overall, not a bad picture on paper.
We will see the MM specialist again in two months, and the nephrologist in late January. She will tell us if Doug needs treatment for the kidney disease.
We are enjoying our daily life and looking forward to Christmas at our son's home in Denver. Our oldest grandson who is in the Air Force will be home for Christmas this year. With the youngest three grandkids off to college next year, we will cherish every chance to get them all together now.
Back in 2008 when Doug was diagnosed with Multiple Myeloma, I didn't think he would be alive 5 1/2 years later. Thanks to new improved drugs, a wonderful specialist, and most of all the grace of God, I have my husband doing pretty well for this disease. I am so thankful.
May we all remember that Christ is the reason for Christmas.
MERRY CHRISTMAS to all!
Sunday, December 22, 2013
Wednesday, October 23, 2013
Membranous Glomerulonephritis
It has been a busy two days, but good ones. Yesterday we went to the Denver myeloma specialist. We already knew the two worst cancer-related causes of the kidney disease had been ruled out by the biopsy. Yesterday we learned the name of Doug's kidney disease: membranous glomerulonephritis. It can be identified only on biopsy. Call it MGN for short. Neither the cancer doc or the kidney doc think it is caused by the myeloma. So the full name is "idiopathic membranous glomerulonephritis." Idiopathic just means unknown cause. The glomeruli are the filters of the kidney.
The myeloma specialist has a good sense of humor. He said "If a dog has fleas, it can still get ticks." So having cancer doesn't mean you can't still get an entirely unrelated disease. I love a doc who laughs. He said MGN isn't in his expertise, so he will let the nephrologist take care of that.
The good news from the myeloma specialist is the cancer is still under control. Doug will remain on the maintenance regime of 5 mg Revlimid every other day, and he will resume Zometa at a lower dose and frequency: 2 mg every six months. The Zometa is good because it reduces the chance of fractures, and bad because it can harm the kidneys, so it is a balancing act. Another bit of good news is the creatinine level is 1.2.
Doug will get a blood draw for a MM panel every two months, and see the specialist every two months.
Today we went to see the nephrologist. She spent a big chunk of time with us explaining everything. She said the clinic owners want her to spend less time on patient visits so she can cram more in, but she is ignoring that directive. Good doc!
She said that MGN is not an uncommon kidney disease. 50% of patients go into spontaneous remission. Maybe Doug will be fortunate enough to fall into that category! The other half will eventually need treatment, with 20% progressing to kidney failure if treatment doesn't work. Treatment would be the immunosuppressive drug Prograf and dexamethasone.
The biopsy showed 30% of Doug's kidneys are permanently damaged - "globally sclerotic." Another name for scarring or fibrosis. The remaining 70% is capable of doing the job. Thankfully God made us with extra capacity.
She feels Doug does not need treatment yet. It is better to wait and monitor him; the drugs have side effects so she doesn't want to use them unless necessary. As long as the creatinine level stays under 2 and the protein level stays under 4 she will just watch. Right now his creatinine is 1.2 and his protein in urine is 3.4, so that is good.
Doug has to take his blood pressure twice a week at home and record it. And watch for ankle swelling. Once a month he will get a pee test and a blood draw for a basic metabolic panel. She will see him every three months for now.
He has some dietary restrictions but nothing dramatic. Not more than 4 servings animal protein per day. One serving is the size of a deck of cards. Drink at least 2 quarts fluid a day. Low sodium diet which we try to follow anyway. Carbs are okay.
We are happy with all this. The awful waiting period is over, we know what Doug has and a plan to follow. We have two wonderful caring specialists who take time to share their knowledge. God has blessed us and we are thankful.
Love to all.
The myeloma specialist has a good sense of humor. He said "If a dog has fleas, it can still get ticks." So having cancer doesn't mean you can't still get an entirely unrelated disease. I love a doc who laughs. He said MGN isn't in his expertise, so he will let the nephrologist take care of that.
The good news from the myeloma specialist is the cancer is still under control. Doug will remain on the maintenance regime of 5 mg Revlimid every other day, and he will resume Zometa at a lower dose and frequency: 2 mg every six months. The Zometa is good because it reduces the chance of fractures, and bad because it can harm the kidneys, so it is a balancing act. Another bit of good news is the creatinine level is 1.2.
Doug will get a blood draw for a MM panel every two months, and see the specialist every two months.
Today we went to see the nephrologist. She spent a big chunk of time with us explaining everything. She said the clinic owners want her to spend less time on patient visits so she can cram more in, but she is ignoring that directive. Good doc!
She said that MGN is not an uncommon kidney disease. 50% of patients go into spontaneous remission. Maybe Doug will be fortunate enough to fall into that category! The other half will eventually need treatment, with 20% progressing to kidney failure if treatment doesn't work. Treatment would be the immunosuppressive drug Prograf and dexamethasone.
The biopsy showed 30% of Doug's kidneys are permanently damaged - "globally sclerotic." Another name for scarring or fibrosis. The remaining 70% is capable of doing the job. Thankfully God made us with extra capacity.
She feels Doug does not need treatment yet. It is better to wait and monitor him; the drugs have side effects so she doesn't want to use them unless necessary. As long as the creatinine level stays under 2 and the protein level stays under 4 she will just watch. Right now his creatinine is 1.2 and his protein in urine is 3.4, so that is good.
Doug has to take his blood pressure twice a week at home and record it. And watch for ankle swelling. Once a month he will get a pee test and a blood draw for a basic metabolic panel. She will see him every three months for now.
He has some dietary restrictions but nothing dramatic. Not more than 4 servings animal protein per day. One serving is the size of a deck of cards. Drink at least 2 quarts fluid a day. Low sodium diet which we try to follow anyway. Carbs are okay.
We are happy with all this. The awful waiting period is over, we know what Doug has and a plan to follow. We have two wonderful caring specialists who take time to share their knowledge. God has blessed us and we are thankful.
Love to all.
Tuesday, October 15, 2013
Kidney Biopsy Results
We got an email from the myeloma specialist's nurse navigator - we have the results from the kidney biopsy:
"The biopsy doesn't show either of the two things (amyloid or light chain deposition disease) we were looking for. Dr. M asks that Doug follow up with Dr. F (the nephrologist). She will want to review the findings and impart her expertise on what is causing the proteinuria and what needs to be done about it."
I am greatly relieved it is not amyloidosis. We are not dancing in the streets yet, because there is still a kidney problem, but we are very glad the results are in and we can move forward. Praise God.
Next step is the visit with the nephrologist, set for October 23. We hope and pray she will discover the cause of the proteinuria - and that it will be treatable.
The 24 hour urine test showed Doug's protein in the urine was 3191. Normal range is 42 to 225. Not sure what the units are called but that is 14 times normal. His creatinine clearance was 61 ml/min which is low. Normal range is 70 to 130. One good thing is there was no apparent M-spike.
The most common causes of proteinuria are diabetes and hypertension. Doug has neither. Hope Dr. F is a good detective.
To find out more about proteinuria click here.
Love to all.
Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand. Isaiah 41:10
"The biopsy doesn't show either of the two things (amyloid or light chain deposition disease) we were looking for. Dr. M asks that Doug follow up with Dr. F (the nephrologist). She will want to review the findings and impart her expertise on what is causing the proteinuria and what needs to be done about it."
I am greatly relieved it is not amyloidosis. We are not dancing in the streets yet, because there is still a kidney problem, but we are very glad the results are in and we can move forward. Praise God.
Next step is the visit with the nephrologist, set for October 23. We hope and pray she will discover the cause of the proteinuria - and that it will be treatable.
The 24 hour urine test showed Doug's protein in the urine was 3191. Normal range is 42 to 225. Not sure what the units are called but that is 14 times normal. His creatinine clearance was 61 ml/min which is low. Normal range is 70 to 130. One good thing is there was no apparent M-spike.
The most common causes of proteinuria are diabetes and hypertension. Doug has neither. Hope Dr. F is a good detective.
To find out more about proteinuria click here.
Love to all.
Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand. Isaiah 41:10
Saturday, October 12, 2013
No Results Yet
Still waiting for results from Doug's kidney biopsy. Waiting for the other shoe to fall. I understand the myeloma doc and the nephrologist need to talk to each other, and thus the delay in finding out anything. So we are trying to be patient. Trying but not succeeding all the time. I'll give it until Tuesday and then will start pestering.
We are trying to keep busy. Doug has been tinkering in his garage workshop, inventing projects. I have been trying new recipes, reading, going for walks. Our hikes together are a thing of the past - Doug is having pain in his left hip - the one that had radiation treatments. He can walk to the corner mailbox but not around the block on most days.
I don't intend to be complaining. We both are counting our blessings and we have so much to be thankful for. I need to write more things in my gratitude journal.
The other day we got a bill from the Denver hospital for $36,000. The date corresponded with Doug's bone marrow biopsy. A phone call to the financial office told us it was an error. For some unknown reason they were not showing our supplemental policy; they corrected their information. The $36,000 was a Medicare co-pay for the bone marrow biopsy. The kidney biopsy cost will be even higher with the radiology guidance. The costs of battling myeloma (or any other cancer) are so high, with procedures and astronomical charges for new chemo drugs. I'm sure glad we have good insurance!
Doug is going with me this afternoon to take a meal to dear friends. Doing something for someone else is good medicine.
Love to all.
We are trying to keep busy. Doug has been tinkering in his garage workshop, inventing projects. I have been trying new recipes, reading, going for walks. Our hikes together are a thing of the past - Doug is having pain in his left hip - the one that had radiation treatments. He can walk to the corner mailbox but not around the block on most days.
I don't intend to be complaining. We both are counting our blessings and we have so much to be thankful for. I need to write more things in my gratitude journal.
The other day we got a bill from the Denver hospital for $36,000. The date corresponded with Doug's bone marrow biopsy. A phone call to the financial office told us it was an error. For some unknown reason they were not showing our supplemental policy; they corrected their information. The $36,000 was a Medicare co-pay for the bone marrow biopsy. The kidney biopsy cost will be even higher with the radiology guidance. The costs of battling myeloma (or any other cancer) are so high, with procedures and astronomical charges for new chemo drugs. I'm sure glad we have good insurance!
Doug is going with me this afternoon to take a meal to dear friends. Doing something for someone else is good medicine.
Love to all.
"One act of thanksgiving, when things go wrong with us, is worth a thousand thanks when things are agreeable to our inclinations." St. John of Avila
Tuesday, October 8, 2013
Kidney Biopsy Done
Yesterday Doug had his kidney biopsy in Denver. The procedure went well but it was a very long day. Three hours drive to PSL, check in at noon as scheduled. We got up to the prep room by 12:30 and IV was started and all the usual questions explanations and paperwork. The nurse asked him when he had his kidney transplant; he has not had a kidney transplant! The question was repeated throughout the day by various medical staff. Turns out that most kidney biopsies are done on transplanted kidneys, to see if the kidney tissue is still healthy. A kidney that is the patient's own is called a "native" kidney in medical lingo. Doug told them his are "owner-operated". He always finds a way to get the nurses laughing.
The biopsy was supposed to start at 2:00 in Radiology. The interventional radiologist does the kidney biopsies - usually with ultrasound guidance. They were running late; Mondays are busy anyway, and they had several add-on cases that got sandwiched in. Doug did not get taken down to radiology until 3:45, and then more waiting there. A nurse came in and explained how it would go, apologized for the lateness, then the interventional radiologist came and introduced himself and took a brief history. A few minutes later the nurse came back and took Doug, saying that the doc had decided to use the CT scanner for guidance instead of ultrasound. I never did find out the reason for that.
The biopsy procedure took about 45 minutes. The pathologist was there to look at the samples before the needle was removed from the kidney. This is not to make a diagnosis, but to ensure the tissue samples are good enough to work with.
I was not allowed to watch, dang it. Strict hospital policy. I am retired from radiology and radiation oncology, so I know the rule. I really appreciate being allowed to stay for the bone marrow biopsies, but that is in a different part of the hospital and by the CBCI people. (Colorado Blood Cancer Institute) CBCI understands it is not only the patient but also the caregiver they are dealing with.
Afterward Doug was taken back up to the prep room. We had been told the kidney biopsy patients are monitored for two hours before discharge. This is to make sure there is no bleeding from the biopsy site. Well the nurse read the orders and found the doc ordered a three hour monitoring period. I suspect the doc had to muck around a little more than usual - but I don't really know. This caused a minor flurry because it was already late; two nurses ended up working overtime. Doug had to lay flat on his back on a folded towel to put pressure on the biopsy site, for two hours. Then he was allowed to get up and walk around a couple of minutes and go pee; the nurse checked and no bleeding at the site or in the urine, yea. Then another hour of lying flat before he was finally discharged. It was 7:30 p.m. by this point.
Doug and I had talked about staying in Denver if it got to be too late. Once we knew everything was delayed, I made a hotel reservation. I knew I was too tired to drive the three hours home in the dark. We were able to get a room in a hotel that gives a hospital discount, and it was in an area I am familiar with - that was a real blessing. No driving around in the dark trying to find an unfamiliar place.
Doug has a small gauze bandage on the left side of his back. He feels good and says he has only very slight soreness. The sedation was the same versed and fentanyl sedation that is used for the bone marrow biopsies, so he has no memory of the biopsy. We are very thankful the procedure went well. We were told it takes 48 hours to get the pathology report. I know our myeloma specialist will need to look it over and come to a decision on treatment before we get a call. We are hoping to hear something by Friday but not holding our breath.
The road ahead on our myeloma journey is about to take a turn. Just can't see around the bend.
The biopsy was supposed to start at 2:00 in Radiology. The interventional radiologist does the kidney biopsies - usually with ultrasound guidance. They were running late; Mondays are busy anyway, and they had several add-on cases that got sandwiched in. Doug did not get taken down to radiology until 3:45, and then more waiting there. A nurse came in and explained how it would go, apologized for the lateness, then the interventional radiologist came and introduced himself and took a brief history. A few minutes later the nurse came back and took Doug, saying that the doc had decided to use the CT scanner for guidance instead of ultrasound. I never did find out the reason for that.
The biopsy procedure took about 45 minutes. The pathologist was there to look at the samples before the needle was removed from the kidney. This is not to make a diagnosis, but to ensure the tissue samples are good enough to work with.
I was not allowed to watch, dang it. Strict hospital policy. I am retired from radiology and radiation oncology, so I know the rule. I really appreciate being allowed to stay for the bone marrow biopsies, but that is in a different part of the hospital and by the CBCI people. (Colorado Blood Cancer Institute) CBCI understands it is not only the patient but also the caregiver they are dealing with.
Afterward Doug was taken back up to the prep room. We had been told the kidney biopsy patients are monitored for two hours before discharge. This is to make sure there is no bleeding from the biopsy site. Well the nurse read the orders and found the doc ordered a three hour monitoring period. I suspect the doc had to muck around a little more than usual - but I don't really know. This caused a minor flurry because it was already late; two nurses ended up working overtime. Doug had to lay flat on his back on a folded towel to put pressure on the biopsy site, for two hours. Then he was allowed to get up and walk around a couple of minutes and go pee; the nurse checked and no bleeding at the site or in the urine, yea. Then another hour of lying flat before he was finally discharged. It was 7:30 p.m. by this point.
Doug and I had talked about staying in Denver if it got to be too late. Once we knew everything was delayed, I made a hotel reservation. I knew I was too tired to drive the three hours home in the dark. We were able to get a room in a hotel that gives a hospital discount, and it was in an area I am familiar with - that was a real blessing. No driving around in the dark trying to find an unfamiliar place.
Doug has a small gauze bandage on the left side of his back. He feels good and says he has only very slight soreness. The sedation was the same versed and fentanyl sedation that is used for the bone marrow biopsies, so he has no memory of the biopsy. We are very thankful the procedure went well. We were told it takes 48 hours to get the pathology report. I know our myeloma specialist will need to look it over and come to a decision on treatment before we get a call. We are hoping to hear something by Friday but not holding our breath.
The road ahead on our myeloma journey is about to take a turn. Just can't see around the bend.
Thursday, October 3, 2013
Kidney Biopsy Scheduled
Wow- things are moving fast now. We got a call from the nurse navigator saying they could do the kidney biopsy tomorrow at 8:00 a.m. We hesitated because there is a storm front expected late tonight. The road from Buena Vista to Denver can get a lot of blowing wind; if it snows the visibility can be awful. So we asked if there was an opening Monday - yes! Doug is scheduled Monday for noon check-in. That is a lot better weather-wise.
We are very glad that it can be done soon. Waiting can be stressful. The sooner the biopsy is done and the results are in, the sooner a treatment plan can be formulated.
We are very glad that it can be done soon. Waiting can be stressful. The sooner the biopsy is done and the results are in, the sooner a treatment plan can be formulated.
Wednesday, October 2, 2013
Needs Kidney Biopsy
After waiting over a week, we got a phone call from the myeloma specialist himself this evening. He said the 24 hour urine test showed that Doug's kidneys are leaking over 3 grams of protein a day. The test showed it is NOT light chain deposition disease. The other possibility is amyloidosis, or there is also a possibility the cause is completely unrelated to the myeloma. So a kidney biopsy is necessary. The nurse navigator will call us to schedule. We hope it can be done as soon as possible, so some kind of treatment can be started.
This does not come as a shock; we have been preparing ourselves. Doug is calm, as am I.
"I know the Lord is always with me. I will not be shaken, for He is right beside me." Psalm 16:8
Blessings to all.
This does not come as a shock; we have been preparing ourselves. Doug is calm, as am I.
"I know the Lord is always with me. I will not be shaken, for He is right beside me." Psalm 16:8
Blessings to all.
Thursday, September 19, 2013
Still in Remission! But Kidney Problems
We went to Denver today, to the Colorado Blood Cancer Institute, to see Doug's myeloma specialist. He said Doug "is in pretty good shape". The bone marrow biopsy came back clean - excellent! He did say that is not a guarantee that the marrow does not contain cancer cells, since only a small area is biopsied. But it is a good indicator. He said the rise in light chains is "non-specific" and inconclusive. So he considers Doug to be still in remission. Yea! Those are welcome words indeed. He wants Doug to resume the Revlimid, 5 mg every other day. No dexamethasone. This is the maintenance regime he's been on for a while now. Doug will need a CBC every few weeks to watch the ANC (absolute white cell count).
But the report from the nephrologist shows a kidney problem: Doug's kidneys are leaking protein, and he has low level of albumin in the blood. He has very minimal swelling and only in his legs. Plasma cell problems can irritate the kidneys and make them leak protein. The nephrologist calls it "nephrotic syndrome".
But the report from the nephrologist shows a kidney problem: Doug's kidneys are leaking protein, and he has low level of albumin in the blood. He has very minimal swelling and only in his legs. Plasma cell problems can irritate the kidneys and make them leak protein. The nephrologist calls it "nephrotic syndrome".
from WebMD:
What is nephrotic syndrome?
Nephrotic syndrome is a sign that your kidneys are not working right. You have nephrotic syndrome if you have high levels of protein in your urine and low levels of protein in the blood.
Nephrotic syndrome is not a disease. It is a warning that something is damaging your kidneys. Without treatment, that problem could cause kidney failure.
What causes nephrotic syndrome?
There are tiny blood vessels in the kidneys that filter waste and extra water from the blood. When these filters are damaged, you get nephrotic syndrome. Protein helps move water from the tissues into the blood. Healthy kidneys keep the right amount of protein in the blood. Damaged kidneys let protein slip from the blood into the urine. Without enough protein in the blood, fluid builds up in the tissues.
The myeloma specialist expects the kidney problem is due to one of two causes: Light Chain Deposition Disease, or Amyloidosis. In LCDD (usually kappa) light chains lodge in a certain part of the kidney, causing damage. Doug's MM is lambda, not kappa.
In Amyloidosis (usually lambda), the light chains turn into a stiff protein called amyloid that is toxic to the kidneys. This would not be good, and might need different treatment.
Doug needs further testing - first a 24 hour urine collection. Depending on the results of that, he might need a kidney biopsy. We have to wait and see.
For now we are basking in the good news that Doug is still in remission. We'll handle the kidney problem as test results come back.
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes." Matthew 6:34 The Message
Friday, September 13, 2013
Light Chain Deposition Disease?
We went to the nephrologist today for an initial consultation; we were sent by our myeloma specialist. We like Dr. F, the nephrologist. She used to practice in Denver but moved to Fairplay which is a small mountain town. She seems to be a real outdoorsy person, explains things well and she has a good sense of humor.
She did a physical exam, complete history. She found some leg edema. Doug gave a urine sample; it showed a lot of protein, and "casts". The urine sample will be sent to an outside lab for more testing.
The most recent lab work shows the creatinine has come down, from a high of 2 to 1.1 - that is good.
With Doug's history of multiple myeloma, and protein and casts in urine, Dr. Fitting feels he may have "light chain deposition disease". That sometimes occurs in myeloma patients but is not common. Click here for information on LCDD
As I understand it, with LCCD, the myeloma proteins "clog" the kidney tubules and affect the kidney's ability to filter the urine. Treatment would be to get the myeloma back under control. No one has clearly stated it yet, but it seems Doug's myeloma has relapsed again.
Dr. F did say that a kidney biopsy might not be needed, since Doug has a known diagnosis of MM.
When we see the myeloma specialist on September 19th, he will give us the result of the bone marrow biopsy, and hopefully he will have a plan.
All this is a big concern, but we trust in God.
Love to all.
She did a physical exam, complete history. She found some leg edema. Doug gave a urine sample; it showed a lot of protein, and "casts". The urine sample will be sent to an outside lab for more testing.
The most recent lab work shows the creatinine has come down, from a high of 2 to 1.1 - that is good.
With Doug's history of multiple myeloma, and protein and casts in urine, Dr. Fitting feels he may have "light chain deposition disease". That sometimes occurs in myeloma patients but is not common. Click here for information on LCDD
As I understand it, with LCCD, the myeloma proteins "clog" the kidney tubules and affect the kidney's ability to filter the urine. Treatment would be to get the myeloma back under control. No one has clearly stated it yet, but it seems Doug's myeloma has relapsed again.
Dr. F did say that a kidney biopsy might not be needed, since Doug has a known diagnosis of MM.
When we see the myeloma specialist on September 19th, he will give us the result of the bone marrow biopsy, and hopefully he will have a plan.
All this is a big concern, but we trust in God.
Love to all.
Wednesday, September 11, 2013
4th Bone Marrow Biopsy
Doug had his bone marrow biopsy done Sept. 9th, at PSL in Denver. It was done by one of the myeloma specialist's nurse practitioners, Jill. She does a lot of these procedures and is very good. Doug got the Versed and Fentanyl sedation, so what pain he experienced, he doesn't remember. Jill injected quite a lot of local anesthetic deep into the tissue too, so Doug didn't have any pain until the suction of pulling the samples from the bone marrow. She had to use the right hip since the left side has had a lot of radiation. The radiation damages the marrow, making it useless for a biopsy.
The whole procedure took only ten minutes in itself. Of course there was a lot of waiting time and the usual paperwork. Afterward we only had to wait 30 minutes to make sure his blood pressure was stable before we got to leave for home.
I drove home with no problems other than the "normal" downtown Denver traffic, which is not normal for me. I had prayed for a safe trip home and God granted that. I also frequently get sleepy while driving a straight flat stretch of highway, but I did fine driving through South Park.
Praise God for a successful procedure and safe trip home.
We got the results from Doug's PET scan yesterday via email. Lots of old bone lesions but no new ones except for one rib fracture which is healing. Several old fractures showed up, mostly in ribs but one in a pelvic bone. Overall the doc said nothing to worry about. Yea!
Our next medical appointment is this Friday, for the consult with the nephrologist. This will be an easy trip since she is in Fairplay, only 40 minutes from home.
Love to all.
The whole procedure took only ten minutes in itself. Of course there was a lot of waiting time and the usual paperwork. Afterward we only had to wait 30 minutes to make sure his blood pressure was stable before we got to leave for home.
I drove home with no problems other than the "normal" downtown Denver traffic, which is not normal for me. I had prayed for a safe trip home and God granted that. I also frequently get sleepy while driving a straight flat stretch of highway, but I did fine driving through South Park.
Praise God for a successful procedure and safe trip home.
We got the results from Doug's PET scan yesterday via email. Lots of old bone lesions but no new ones except for one rib fracture which is healing. Several old fractures showed up, mostly in ribs but one in a pelvic bone. Overall the doc said nothing to worry about. Yea!
Our next medical appointment is this Friday, for the consult with the nephrologist. This will be an easy trip since she is in Fairplay, only 40 minutes from home.
Love to all.
Friday, September 6, 2013
PET scan
Yesterday we went to Denver, for Doug's PET scan and a bone marrow biopsy. We had to wait several times on road construction, and Denver traffic was busy as usual. To get to PSL med center where the Colorado Blood Cancer Institute is, we have to drive into downtown Denver. Not fun for us small town people.
Doug had his PET scan - that takes over two hours. First they put in an IV line, inject the radio isotope, then a waiting period for it to travel around the body. Then they do a CT scan. Then on the same table they do a PET scan which takes at least 45 minutes in itself. Doug was having a whole body scan which takes longer; all his bones will be checked out to see if there are any new lesions.
We knew he would need the radio isotope, but no one said anything about drinking barium! He was supposed to have the bone marrow biopsy after the PET scan. Both exams called for him to be NPO. (Nothing by mouth; the Latin words are 'nil per os').
The coordinator was unaware the PET scan would require barium when she scheduled it. No one ever told us about the barium ahead of time. Drinking the barium (and washing it down with water) interfered with the six hour NPO period, so the bone marrow biopsy could not be done that day. They could have done it without sedation but Doug said "NO THANKS!" The first one he ever had was done with no sedation and it was very very painful. They usually have to do several bone punctures since his pelvic bones are mushy in places.
We got it rescheduled for the coming Monday, so at least they squeezed him in without a long delay. For that we are thankful. Unfortunately we have to drive into Denver again. Doug won't be allowed to drive home. God will send his angels to keep me awake and alert on the road home.
Doug had his PET scan - that takes over two hours. First they put in an IV line, inject the radio isotope, then a waiting period for it to travel around the body. Then they do a CT scan. Then on the same table they do a PET scan which takes at least 45 minutes in itself. Doug was having a whole body scan which takes longer; all his bones will be checked out to see if there are any new lesions.
We knew he would need the radio isotope, but no one said anything about drinking barium! He was supposed to have the bone marrow biopsy after the PET scan. Both exams called for him to be NPO. (Nothing by mouth; the Latin words are 'nil per os').
The coordinator was unaware the PET scan would require barium when she scheduled it. No one ever told us about the barium ahead of time. Drinking the barium (and washing it down with water) interfered with the six hour NPO period, so the bone marrow biopsy could not be done that day. They could have done it without sedation but Doug said "NO THANKS!" The first one he ever had was done with no sedation and it was very very painful. They usually have to do several bone punctures since his pelvic bones are mushy in places.
We got it rescheduled for the coming Monday, so at least they squeezed him in without a long delay. For that we are thankful. Unfortunately we have to drive into Denver again. Doug won't be allowed to drive home. God will send his angels to keep me awake and alert on the road home.
Wednesday, August 28, 2013
Nephrology appointment - finally!
This morning Doug and I were walking part of the Colorado Trail, going at our usual slow pace, enjoying nature. My cell phone rang - wow, good reception up on the trail. It was the nephrology office telling me that Doug has an appointment for an initial consult. Finally! It has been nine working days - not counting weekends - since we've been trying to get it scheduled.
The secretary who called explained that Dr. F, the nephrologist, likes to talk directly to the referring physician before she schedules a new consult. She has not yet talked to Doug's myeloma specialist, Dr. M, but is making an exception in Doug's case. I am pretty sure it is because I emailed Dr. M's "nurse navigator" again and asked her to please help get this going. The nurse navigator is wonderful - a good advocate.
So after many phone calls and emails, we have an appointment for September 13. Friday the 13th doesn't bother us. Just glad we are not lost in the system!
Praise the Lord.
The secretary who called explained that Dr. F, the nephrologist, likes to talk directly to the referring physician before she schedules a new consult. She has not yet talked to Doug's myeloma specialist, Dr. M, but is making an exception in Doug's case. I am pretty sure it is because I emailed Dr. M's "nurse navigator" again and asked her to please help get this going. The nurse navigator is wonderful - a good advocate.
So after many phone calls and emails, we have an appointment for September 13. Friday the 13th doesn't bother us. Just glad we are not lost in the system!
Praise the Lord.
Thursday, August 15, 2013
Kidney Problem; 5 Year anniv
It has been five years since Doug was diagnosed with Multiple Myeloma. With the advent of new drugs, survival has increased but MM is still considered incurable. This year, two new drugs were approved by the FDA for myeloma (carfilzomib and pomalidomide). Doug has only taken one myeloma drug, and that is Revlimid. So there is an arsenal still to be tapped.
We went to Denver today to see Doug's myeloma specialist. He was very concerned about Doug's rising creatinine numbers. The lab work from August 1st shows a creatinine of 2, which Dr. M said is "troublesome". The high creatinine could be explained by the myeloma, but it could also be caused by a kidney problem independent of the myeloma. A rising creatinine can make the light chains go up.
Both the Lambda and Kappa light chains are up, but the ratio is still okay.
So the question is - is the myeloma relapsing, or is there a completely alternate explanation for the creatinine? At any rate, the kidney function is a concern.
So the first thing he wants to do is send Doug for a consult with a kidney specialist (nephrologist). Luckily there is a good one in Fairplay, which is 40 minutes from us. Dr. M called her office to explain the situation but she was out sick. Tomorrow we hope to find out when Doug's nephrology appointment is; we are hoping for very soon.
Today Dr. M ordered new labs - blood chem and MM panel. He also wants Doug to have a PET scan to check for any new bone lesions, and a repeat bone marrow biopsy. Those are scheduled for September 5 in Denver.
For now, the Revlimid is on hold until we find out what is going on. If the myeloma really is relapsing we will need to change to a different drug.
The Zometa is also on hold since it is known to be hard on the kidneys.
Doug's cardiologist has taken him off lisinopril because of the kidney function problem.
It was a long day, with a few travel delays. We made a quick stop on the way in at Hobby Lobby to get fabric for a reupholstery project. Had lunch at Wendy's, then on to the oncology office at PSL hospital near downtown Denver. We got caught up in a traffic snarl on Colfax St. After crawling along, we discovered it was due to a big accident that closed two lanes. Finally got past that, and once more traffic all but stopped. We were detoured around several city blocks at a snail's pace. We found out later there had been a shooting in Civic Center park and they were looking for the shooter. We happily made it to the oncology office just in time. We always allow extra travel time just in case.
Doug drove the whole way and did a great job. He's understandably tired. We stopped at a restaurant in BV for a nice relaxing supper. We are glad to be home in our little one-stoplight town.
We are taking things one step at a time, and are thankful for good medical support and good health insurance to pay for all these tests.
God bless you all.
Monday, August 5, 2013
Light Chains Up Again
Today we stopped by the hospital and picked up the results of Doug's latest myeloma panel. The Lambda Light Chain numbers are up for the third time in a row; this time 5.22 mg/dL. Last time the oncologist said twice is not enough to be a trend. Well now there is a definite trend up - wrong direction! The Light Chain numbers are how we track the cancer - the bad cells are on the move.
When we see the Denver myeloma specialist on August 15, we will be very interested to hear what he says. We need to halt the upward climb. At least it isn't a steep climb, but a gradual increase.
The kidney numbers are a bit worse too. BUN is now 23 and Creatinine is 2.0. White cell count is low at 4.2 but not alarmingly so, and the ANC is okay at 2.0.
So this lab report is not welcome news, but it is not a shock either. We have long known that the myeloma would resurface - just a question of when. We have full confidence in the myeloma specialist, and we know that many other drugs are available to treat MM.
Most of all, we trust that God will provide whatever we need to cope with whatever happens.
"But blessed are those who trust in the Lord
and have made the Lord their hope and confidence.
They are like trees planted along a riverbank,
with roots that reach deep into the water.
Such trees are not bothered by the heat
or worried by long months of drought.
Their leaves stay green,
and they never stop producing fruit."
Jeremiah 17:7-8
When we see the Denver myeloma specialist on August 15, we will be very interested to hear what he says. We need to halt the upward climb. At least it isn't a steep climb, but a gradual increase.
The kidney numbers are a bit worse too. BUN is now 23 and Creatinine is 2.0. White cell count is low at 4.2 but not alarmingly so, and the ANC is okay at 2.0.
So this lab report is not welcome news, but it is not a shock either. We have long known that the myeloma would resurface - just a question of when. We have full confidence in the myeloma specialist, and we know that many other drugs are available to treat MM.
Most of all, we trust that God will provide whatever we need to cope with whatever happens.
"But blessed are those who trust in the Lord
and have made the Lord their hope and confidence.
They are like trees planted along a riverbank,
with roots that reach deep into the water.
Such trees are not bothered by the heat
or worried by long months of drought.
Their leaves stay green,
and they never stop producing fruit."
Jeremiah 17:7-8
Friday, August 2, 2013
Creatinine up, Zometa denied
Well it has been quite a while since I've posted here.
Doug has been feeling good and we've been busy. We volunteered together to be station leaders for our church's vacation bible school all last week. It was rewarding to help the kids come to understand God's love for them, but it was exhausting at the same time. Thankfully it was only mornings, leaving afternoons for rest! We had great music and the energy of the kids was catching, so we have to say it was a very positive experience.
We have been able to go hiking together up in the mountain forest trails. Calling it hiking is a misnomer - we kind of mosey along, stepping off the trail when actual hikers pass us. Just getting out and walking in the woods and mountain air, sometimes beside burbling creeks, is a wonderful tonic.
We've resumed going to yard sales on weekends, something we have always enjoyed. Since this is a small community, we often see friends while bargain hunting.
Now for the medical news. On July 24 Doug went for his Zometa infusion. The required preliminary blood work showed a high Creatinine level - 1.6, above the cut-off level of 1.4. BUN was also elevated at 19. The local oncologist would not approve the Zometa, feeling the danger to Doug's kidney function was too much. So Doug has to try again in one month. Meanwhile he is really trying to drink a lot of water. (Something I have given up nagging him about, since nagging did not affect his lack of hydration. It was hard to resist saying 'I told you so' but I bit my tongue.)
Doug's ANC was 1.9 which is very acceptable while on maintenance Revlimid.
The local oncologist is retiring this month. We are sad to see him go, but he deserves to retire - he's in his mid 70's. The local hospital did manage to find a replacement, but just in the nick of time. After doing a bit of research on the new oncologist, we are leery and won't be depending on her for much.
Doug has an appointment with the myeloma specialist in Denver for August 15. By then we'll have the results of the latest myeloma panel. The last two have shown an uptick in light chain numbers. If this pending one also goes up, we might be facing a change of chemo. We are waiting and hoping that won't be the case.
Love to all.
Doug has been feeling good and we've been busy. We volunteered together to be station leaders for our church's vacation bible school all last week. It was rewarding to help the kids come to understand God's love for them, but it was exhausting at the same time. Thankfully it was only mornings, leaving afternoons for rest! We had great music and the energy of the kids was catching, so we have to say it was a very positive experience.
We have been able to go hiking together up in the mountain forest trails. Calling it hiking is a misnomer - we kind of mosey along, stepping off the trail when actual hikers pass us. Just getting out and walking in the woods and mountain air, sometimes beside burbling creeks, is a wonderful tonic.
We've resumed going to yard sales on weekends, something we have always enjoyed. Since this is a small community, we often see friends while bargain hunting.
Now for the medical news. On July 24 Doug went for his Zometa infusion. The required preliminary blood work showed a high Creatinine level - 1.6, above the cut-off level of 1.4. BUN was also elevated at 19. The local oncologist would not approve the Zometa, feeling the danger to Doug's kidney function was too much. So Doug has to try again in one month. Meanwhile he is really trying to drink a lot of water. (Something I have given up nagging him about, since nagging did not affect his lack of hydration. It was hard to resist saying 'I told you so' but I bit my tongue.)
Doug's ANC was 1.9 which is very acceptable while on maintenance Revlimid.
The local oncologist is retiring this month. We are sad to see him go, but he deserves to retire - he's in his mid 70's. The local hospital did manage to find a replacement, but just in the nick of time. After doing a bit of research on the new oncologist, we are leery and won't be depending on her for much.
Doug has an appointment with the myeloma specialist in Denver for August 15. By then we'll have the results of the latest myeloma panel. The last two have shown an uptick in light chain numbers. If this pending one also goes up, we might be facing a change of chemo. We are waiting and hoping that won't be the case.
Love to all.
Wednesday, May 15, 2013
Light Chains Up
Doug had his appointment with the local oncologist a few days ago. Report from the myeloma panel that is done every three months shows a rise in his Lambda Light Chains. Last value was 1.54 mg/dL which was in the normal range. This time it is 3.01 - not the direction we want it to go. This is above normal (normal range is .5700 - 2.63) but not alarming yet. The oncologist says to wait the usual three months until the next test and see what that shows. If it is a definite upward trend, then it means the current chemo is not enough to control the myeloma. Doug would have to go on a different drug. The good news is, there are some new myeloma drugs out there.
When Doug relapsed in late 2011, his Lambda light chain number was a whopping 83 mg/dL.
Quality of life is still excellent. Doug looks and feels healthy, has energy and is doing a lot. His other blood counts are hanging in there pretty good.
We have done quite a few home projects this year, some hired out and some we did ourselves. Our next project is staining the new fence, and then we'll be planting some shrubs. Our new house doesn't have a lawn to maintain, so that is a relief. No mowing, only pulling weeds out of the gravel. I will be planting flowers in pots instead of big flower beds.
We haven't traveled anywhere but we are happy just being homebodies. Our old house is under contract and expected to close June 24; that will be a day to celebrate! It has been on the market a whole year. A wonderful younger couple is buying it and they are excited. A blessing is that they are already doing most of the yard work over there.
Our mountain tops still have snow (love that) but our weather is warming up finally. God is good, and we know He is faithful. Life is good.
Love to all!
When Doug relapsed in late 2011, his Lambda light chain number was a whopping 83 mg/dL.
Quality of life is still excellent. Doug looks and feels healthy, has energy and is doing a lot. His other blood counts are hanging in there pretty good.
We have done quite a few home projects this year, some hired out and some we did ourselves. Our next project is staining the new fence, and then we'll be planting some shrubs. Our new house doesn't have a lawn to maintain, so that is a relief. No mowing, only pulling weeds out of the gravel. I will be planting flowers in pots instead of big flower beds.
We haven't traveled anywhere but we are happy just being homebodies. Our old house is under contract and expected to close June 24; that will be a day to celebrate! It has been on the market a whole year. A wonderful younger couple is buying it and they are excited. A blessing is that they are already doing most of the yard work over there.
Our mountain tops still have snow (love that) but our weather is warming up finally. God is good, and we know He is faithful. Life is good.
Love to all!
Thursday, March 21, 2013
4th year SCT anniversary; FLU
Four years ago, in 2009, Doug was day 2 post stem cell transplant. We've come a long way!
Doug continues to get a CBC every month; so far his absolute neutrophil count (ANC) is holding. Last one was 1.7 which is well above the 1.0 minimum for continuing with Revlimid.
Both of us have had the gastrointestinal flu - I was first and hoping Doug would not get it. Nasty stuff. But he did get it 5 days ago. It hit him pretty hard but he is making a good, but slow, recovery. He is finally eating solid food. We are so thankful that his immune system is capable of fighting!
I have developed an eye problem - "macular pucker" - which makes it difficult for me to work on the computer. Hopefully there will be nothing to report for a while on the myeloma front. I go to see a retinal specialist in Colorado Springs tomorrow (a friend is driving).
Spring is here! So far today we have had snow, rain/snow, sunshine. The weather is confused. We are glad of any bit of moisture, so no complaining.
Love to all.
Doug continues to get a CBC every month; so far his absolute neutrophil count (ANC) is holding. Last one was 1.7 which is well above the 1.0 minimum for continuing with Revlimid.
Both of us have had the gastrointestinal flu - I was first and hoping Doug would not get it. Nasty stuff. But he did get it 5 days ago. It hit him pretty hard but he is making a good, but slow, recovery. He is finally eating solid food. We are so thankful that his immune system is capable of fighting!
I have developed an eye problem - "macular pucker" - which makes it difficult for me to work on the computer. Hopefully there will be nothing to report for a while on the myeloma front. I go to see a retinal specialist in Colorado Springs tomorrow (a friend is driving).
Spring is here! So far today we have had snow, rain/snow, sunshine. The weather is confused. We are glad of any bit of moisture, so no complaining.
Love to all.
Saturday, February 9, 2013
Remission II still holding
Doug is still in remission! His Lambda light chains are within normal limits.
He relapsed in November 2011, and went into his second remission in January 2012. So it has been a whole year of remission! Wow.
He still gets Zometa every 3 months for bone strength, since he has known bone lesions. His ANC was 1.9 last week, which is good for him, so he can stay on the Revlimid 5 mg every other day. He will only need a blood draw every 3 months; that is good news for his veins. He will get the Zometa and a CBC and the MM panel in one needle stick.
We have been living a normal lifestyle - that seems amazing to me.
The oncologist said that if Doug has any fevers, he will need a CBC blood test to make sure he has enough white cells to fight infection.
So far we have both evaded the flu, which is a huge blessing.
I can almost forget that my husband has cancer. Almost, but not quite. It is lurking in the background, but we don't focus on it. We trust in God.
Love to all.
"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13
He relapsed in November 2011, and went into his second remission in January 2012. So it has been a whole year of remission! Wow.
He still gets Zometa every 3 months for bone strength, since he has known bone lesions. His ANC was 1.9 last week, which is good for him, so he can stay on the Revlimid 5 mg every other day. He will only need a blood draw every 3 months; that is good news for his veins. He will get the Zometa and a CBC and the MM panel in one needle stick.
We have been living a normal lifestyle - that seems amazing to me.
The oncologist said that if Doug has any fevers, he will need a CBC blood test to make sure he has enough white cells to fight infection.
So far we have both evaded the flu, which is a huge blessing.
I can almost forget that my husband has cancer. Almost, but not quite. It is lurking in the background, but we don't focus on it. We trust in God.
Love to all.
"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13
Wednesday, January 30, 2013
All is well
Today Doug had his Zometa infusion. Before giving it, the nurse has to draw blood, and the oncologist has to approve the counts. The nurse had a little trouble with the blood draw but she finally got it. The lab report came back - Doug's Creatinine was 1.5 and it is supposed to be under 1.4 for him to get the Zometa. But the oncologist said it was okay to proceed.
Doug's ANC was 1.9 today. Still low, but last time it was 1.4, so this 1.9 looked great to us. The Revlimid 5 mg every other day is working.
So three hours later, we were headed home.
The nurse drew extra blood today for the MM panel, which goes to Mayo. We'll get that result next week.
Doug has been feeling good. We have both escaped the flu so far. We made a quick trip to Nebraska last week for a funeral, and saw Doug's mom while we were there. Thankfully, she is doing okay.
So no drama here, just smooth sailing for now. This part of our myeloma journey is like driving on the interstate; no unexpected turns, no bumpy roads. We are so blessed.
God bless you all.
Doug's ANC was 1.9 today. Still low, but last time it was 1.4, so this 1.9 looked great to us. The Revlimid 5 mg every other day is working.
So three hours later, we were headed home.
The nurse drew extra blood today for the MM panel, which goes to Mayo. We'll get that result next week.
Doug has been feeling good. We have both escaped the flu so far. We made a quick trip to Nebraska last week for a funeral, and saw Doug's mom while we were there. Thankfully, she is doing okay.
So no drama here, just smooth sailing for now. This part of our myeloma journey is like driving on the interstate; no unexpected turns, no bumpy roads. We are so blessed.
God bless you all.
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