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".

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

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.

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.

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.