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

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.

“If you don’t like something change it; if you can’t change it, change the way you think about it” — Mary Engelbreit

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.

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. 

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!

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.

Rising light chains but okay

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!