Waiting

Nothing much has happened lately. Doug is having relatively minor side effects from the Revlimid/Dex chemo. Trouble sleeping, fatigue, indigestion. He gets 'wired' at times and has trouble relaxing. Understandable. Next week we will get results to see how effective this chemo has been. Stay tuned.

Love to all, and our best wishes for 

Merry Christmas

We went to the most wonderful Christmas Eve service tonight at our church. Doug has not wanted to go anywhere or do anything lately, but I'm glad he made the effort tonight. It was inspirational and lovely.

I found this from Max Lucado:

"God isn't going to
let you see the distant scene.
So you might as well quit looking for it.
He promises a lamp unto our feet,
not a crystal ball into the future.
We do not need to know what
will happen tomorrow.
We only need to know He leads."

As we celebrate this Christmas season, may you feel His loving presence in everything you do.

Radiation Consult on Right Arm

Today we went to Shaw Cancer Center for a consult with the Radiation Oncologist regarding Doug's right arm. The bone skeletal survey had shown a 5 cm. lesion in the upper arm. Dr. H. showed us the x-rays and said although the cortex (the strong outside part of the bone - picture the bone of a round steak) is not involved, the marrow has lots of myeloma present.
Doug is not having any pain in the arm. Dr. H said there is a possibility of pathological fracture, but she can't be sure if that would happen.

We decided to wait on the radiation. We'll know in about two more weeks if the Revlimid/Dex is successful in lowering the light chains. If the light chains go down, and Doug does not develop pain in the arm, then radiation might not be needed.

We saw today the result of the baseline FreeLite test that was done on 12-13 before Doug started the Revlimid/Dex chemo; we knew it would not show any improvement.
July 5 the light chains were 41.3 mg/dL
Oct 6 the number was          47.3
Dec 13 was                           83.0

The scary part here is how fast the light chains are rising. In 10 weeks they almost doubled.
The light chain numbers are the indicator of disease progression. Going higher is not good. We need them to come way down.
The next FreeLite blood test will be done Jan 2, after the first course of chemo. We see the oncologist Dr. M on Jan 4. Hopefully he will have the results then. If the light chains don't go down, then we go to Plan B. Waiting is hard.

Doug is feeling pretty good with only slight side effects from the chemo - some fatigue and altered taste buds and constipation. He manages to stay calm and his sense of humor is intact. He does take Ativan to help him sleep at night. On the Dex days he needs a sleeping pill; the Dex 'wires' him.

The roads were good with only slight snowpack. Snow on the high mountains was gorgeous. On the way we saw 7 or 8 Bighorn Sheep - they crossed the road in front of us. Magnificent animals.

Love to all.

Be still in the presence of the Lord and wait patiently for him to act.         Psalm 37:7

Progress at last

Today we spent an hour at the oncologist's office. Doug's kidney function is down. The GFR is now 51, was 54 last week. We would like to see the GFR at least 60.
So Dr. M. ordered the Revlimid dose lowered to 10 mg instead of 25.

His assistant spent at least 30 minutes on the phone to Accredo, the pharmacy; she talked to five different people. Since the dose was not the same as originally ordered, there was confusion on their end; Medco/Accredo does not have the most efficient organization. At one point it seemed like we might have to start over with the paperwork. Finally they agreed to ship the Revlimid - it should come tomorrow. Yeah, at last! Doug should have been on Revlimid two weeks ago.

Now we have ammunition to fight this cancer. We should know in a month if the Revlimid is knocking back the myeloma light chains. If yes, Doug stays on it. If no, then we go to Plan B, which is adding another chemo drug.

Although Doug's kidney function is worrisome, at this point it is considered adequate. Dr. M. told us that he thinks we will see improved kidney function when the chemo reduces the light chain load.

We were supposed to have a consult with the radiation oncologist in Edwards tomorrow -- we have put that off until next week, as we need to be home to accept delivery of the Revlimid. Doug will go to the hospital tomorrow to get a blood draw so we can have a baseline on the light chains right before he takes the Rev. I will stay home to sign for the Rev.

There have been a lot of emotional ups and downs lately, but now we feel we are doing something to attack this disease. Feels good.

I will rescue those who love me. 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

My Dream

I don't usually remember dreams, and I have never put a lot of stock into interpreting dreams. But last night I had a dream that was crystal clear and I could remember details. I wrote it down when I got up.

I am standing on a bridge. It is large and wide, wide enough for cars. The bridge rests on huge round concrete looking support pillars. It looks safe, and I am holding onto a sturdy railing. I start walking - the only things I can see are the bridge ahead of me and the sea underneath. I am walking confidently but I don't know where I am going. There is no one else with me.

The bridge gets narrower, and suddenly the center drops out - I have only a few inches to walk on. I grip the railing and walk carefully. The foundation is still strong. I am careful not to look down at the sea, but I can hear it. Don't look down!

The planking sometimes gets wider again and the large hole in the center disappears. A thick fog rolls in; I can't see ahead. I have to hold on or I might fall. The ocean is below. The bridge surface is not smooth anymore - it has some holes in it - I almost step through a hole. Hold tight to the railing. Keep walking, the railing will hold me. I feel scared because I can't see anything. Is there a sharp turn ahead? Will the bridge suddenly end - will I fall off? Hold on tight. The bridge will not fail if I hold on to the railing.

The fog lifts but all I can see is the bridge ahead and the sea below. I feel calmer - I don't seem worried and I keep walking.

That's all; no dramatic ending. The bridge foundation is my faith in God; the railing is my trust in Him. The sea is Multiple Myeloma; the holes are Worry. I am not sure what the fog represents.

 The future is unknown. Hold on to the railing.

Baby steps

Thursday the Accredo pharmacy called to get our credit card number. They put a hefty charge on it. Fortunately, the patient assistance grant came though; they will reimburse us for out of pocket expenses for medications, up to a certain point. We are so thankful for that.

Yesterday, someone else from Accredo called to check our address for delivery of the Revlimid. We had to tell them to hold the shipment until Monday because of the possible dose adjustment. Baby steps.

Dr. M, the oncologist,  called yesterday. He said the radiologist doesn't think Doug's arm is in danger of fracturing. However, Dr. M wants us to go see the radiation oncologist, to get her opinion. So next Tuesday we have an appointment with Dr. Hardenburgh in Edwards.

Monday we should find out about Doug's kidney function. That is my key concern right now. Meanwhile we are counting our joys.

Man is fond of counting his troubles but he does not count his joys. If he counted them up as he ought, he would see that every lot has enough happiness provided for it.            Fyodor Dostoevski

Results of skeletal survey, Kidney Function

Today Doug had his Zometa infusion done at the hospital infusion center. It takes about an hour for the infusion because Doug needs extra fluids given to help protect his kidneys. A blood draw is always done first to check his creatinine. More on kidneys later in this post.

Dr Myers gave us the results of yesterday's skeletal survey: scattered small lesions in the skull, pelvis, upper femurs. The largest lesion was seen in the upper right arm. The small ones are not expected to be a problem; the Zometa should encourage bone repair in those areas. The radiologist could not see if the bony cortex is involved in the right arm - we don't know if that area could be in danger of pathological fracture. So Dr. M ordered a CT scan of the right upper arm; luckily we were able to get that done while we were at the hospital. If it looks serious enough, Doug might need more radiation therapy. I have a gut feeling that won't be necessary but we'll wait and see.

The big concern today is kidney function. Doug had kidney damage from lack of blood flow when he had the complete heart block in 2009; the kidneys recovered fairly well from that. The myeloma itself can cause kidney damage -- especially light chain myeloma which Doug has now. Zometa is also hard on kidneys; that's why extra fluids are administered along with the Zometa.
Today's blood test showed creatinine of 1.4, BUN 20 and eGFR 54. According to one of my sources, BUN and creatinine will not be raised above the normal range until 60% of total kidney function is lost.
Our local oncologist Dr. M conferred with the super-specialist in Denver, Dr. Jeff. Doug will need to do a 24 hour urine test to get a better read on the GFR.

Glomerular filtration rate (GFR) describes the flow rate of filtered fluid through the kidney. It tells what the renal (kidney) function is - a more sensitive test.

Both doctors say that if the GFR is less than 60, Doug won't be able to get the full dose of Revlimid. Revlimid is a nephrotoxic drug, meaning that it can harm the kidneys. This is a catch-22. Doug needs the highest dose of Revlimid (25 mg) to attack the cancer. But he also needs his kidneys to keep functioning! A lower dose would be less damaging to the kidneys, but not as effective against the myeloma.

All those out there who pray for us, please pray for adequate kidney function so Doug can get the full dose of Revlimid to fight the cancer.

Our spirits are good. Doug looks very good - just by looking at him, no one would ever know he has cancer.

"We who have fled to God for refuge can have great confidence as we hold to the hope that lies before us. This hope is a strong and trustworthy anchor for our souls. It leads us through the curtain into God’s inner sanctuary." Hebrews 6:18-19

Skeletal Survey

Doug had his skeletal survey x-rays taken today.

 A skeletal survey is a series of plain x-rays of  bones in the body that are most likely to be involved with myeloma. It usually consists of side view of the skull, side and front views of the entire spine, front views of both upper arm bones, ribs, pelvis and both femurs.

The radiologist will be looking for 'lytic lesions', which are "punched out" areas of bone. At least 30% bone loss is required to visualize the destructive process.

The purpose of doing the skeletal survey is to identify places that will become a problem if not treated. Prevention of possible fractures and pain is the goal. I like that goal.

On Dec 2 when we saw Dr. Matous for the second opinion, he said the correct term for what Doug has now is "Lambda Light Chain Myeloma", and 15% of myeloma patients are in this group.

Today has been a good day - calm and quiet.

Love to all.

"The Lord keeps watch over you, both now and forever."  Psalm 121:8

Where's the Revlimid?

We are still waiting to get the Revlimid. It was ordered by the Salida oncologist last Wed Nov 30 when we were at the office. As I've said, Revlimid is a tightly controlled drug - rightly so, since it is a cousin to Thalidomide - anyone remember those terribly deformed babies? Celgene, the maker of Revlimid, requires tons of paperwork to be done before anyone can get it. Doug had to state several times that he would not get anyone pregnant. Realizing that there would be many forms to fill out, we stayed at the oncologist's office an extra hour so Doug could sign and the office could fax back to Celgene, then get their approval. There was also insurance pre-approval paperwork faxed back and forth. And paperwork to and from the mail order pharmacy that actually dispenses the drug.

Finally all seemed in order. The oncologist's assistant is good - she is persistent and we left feeling that the Revlimid would be here soon. We know from our previous experience that the Rev comes via overnight delivery, and the mail order pharmacy, Medco, always calls to make sure we are home to accept delivery.

Monday (yesterday) and no phone call from the pharmacy. Doug went to their website; the order showed up there. So Doug called Medco to ask what is the problem. The nice lady checked and informed Doug that the hangup was in the billing department. Evidently they hadn't been assured of payment. Frustrating. Then Doug called the oncologist's assistant in Salida - she made three phone calls to the pharmacy, called us back to say all seems in order.

As of this writing we still have not gotten the phone call to expect delivery. I want to shake someone! The system is broken. The sooner Doug gets started on the Rev the better. Waiting is not good. I am trying to stay calm; Doug is getting good at it.

Part 2: Doug called the oncology office again. The Dr's assistant suggested we call the pharmacy directly to omit the middle person. Doug did call -- he found out there is another entity involved: Medco has a subsidiary 'specialty pharmacy' by the name of Accredo. They handle the 'high-risk' drugs. The person there said the fax from the oncologist's office went to Medco instead of Accredo. Can this get any more complicated?

Results of Second Opinion

Yesterday we went to Denver to get a second opinion on how to proceed with treatment for Doug's recurrence of MM. I am thanking God for guiding us to get this opinion now. We saw Dr. Jeff Matous who was Doug's transplant doc in 2009. Dr. Jeff is an amazing guy. He goes to all the big myeloma conferences and often is a speaker, presenting papers. He knows all the latest stuff on MM. He is also a really great human being.

Dr. Jeff told us that we have "lots of options". He agrees with what Dr. M in Salida wants to do (Revlimid and Dexamethasone) but with one important difference: we will be using a new type of blood test (FreeLite) to follow up after each cycle (each month) instead of the old test after every two cycles. Jeff says - "You can't wait two months, we need to know right away if this is working or not." Dr. Jeff also agrees with the necessity of Zometa.

Dr. Jeff laid out - actually wrote out for us - a flow chart. If the Rev/Dex doesn't lower the light chains enough, then we go to plan B, which is to add Velcade to the Rev/Dex combo. I won't go into all the options now, but he wrote down seven different drug combos, going from the simplest to more complicated. The more complicated, the more side effects. Option #5 is a second stem cell transplant -- Doug says "no way!".

When he was looking over the previous lab results that were done in Salida, Dr. Jeff noticed a startling thing: the Salida myeloma panel is sent to Mayo Clinic, which uses different lab units of measurement. So when Dr. Jeff was talking on the phone to Dr. M in Salida, they were actually unknowingly talking apples to oranges.

Mayo uses mg/dL  = milligrams per deciliter.
Almost every other lab in the country uses mg/L = milligrams per liter.
Huge difference!

The October light chains were reported as 47.3 mg/dL - spoken informally over the phone as "47.3"  Dr. Jeff heard 47.3 and thought 'thats high but not so bad' when the two docs were talking. When he was looking at the actual paper, he noticed the mg/dL and said "Wow - that would be 473 in our lab!" Much higher than he was thinking - not good.

So pay attention all you other myeloma patients - make sure if you use more than one doctor that they are not comparing apples to oranges!  I know Mayo is an entity unto itself, but they should get with the program and conform to the rest of the country, or at least make the mg/dL in bold print so it is easily noticed.

We will still go to Salida for the monthly blood draw and for the Zometa - Dr. M will be working closely with Dr. Jeff and sending all reports to him. We will be depending on Dr. Jeff to make all the important decisions if we have to change course. We are comfortable with this plan.

As we were leaving the clinic, Dr. Jeff asked us what route we were taking home - he told us a better way to go, and even drew a map so we wouldn't get lost. What a guy.

We had good travel weather, good road surfaces. Woke up to snow this morning. On a sad note - we had to euthanize our little Chester chihuahua this morning. His heart finally gave out after over a year of medications. This will be the first time in 33 years that we are dogless. I don't want another dog right now.

Love to all.

Going for Second Opinion

Doug has decided he does not want to wait until two cycles have passed. He wants to get a second opinon now. Yes!! I am very glad.

We emailed the physician who was Doug's transplant doc and asked for an appointment. Dr. Jeff M. said that he would see us, and he forwarded our email to his scheduling person. Dr. Jeff is a very busy man but we were hoping to be able to see him soon. The scheduling person found a cancellation, and we are going tomorrow! Wow.

We have to go to Denver to see this highly regarded myeloma expert, and will be driving home in the dark. Driving on mountain roads in the dark of winter is not our favorite thing but we can do that.

This is a good thing, a blessing. How many physicians of his stature even check their email - and then answer that same morning?! Wow.