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.
Wednesday, August 28, 2013
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.
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