M-Spike Results for 11/7

We are happy to report that the latest M-spike went down! In 4 weeks in went from 1.4 to 0.9! Praise the Lord!!

From past experience we know that as the number gets smaller there is a gradual decrease in the spread from test to test. So even though the 1st test showed a drop of .8 and this one is only .5, it doesn't bother us at all. It's what we expected and we are grateful for the continued effectiveness of the new treatment.

As always thanks for your prayers!

Cycle 2 Over, Now On Cycle 3

Our last visit was on 11/7 and then we went out of town for a few days. So I am a little late in updating you all.

We learned another new aspect of being in a clinical trial; its called Grading. The Adverse Effects (side effects) are graded. Grades 1-3. If you are graded a 3 you are taken off the medicine until you return to the baseline of where you were when you started.

What does this mean…..well if the side effects increase to a degree that the doctor feels they are adversely affecting your health, they will stop treatment. The maker is more concerned with "limiting" the adverse effects then they are with "Efficacy." Baseline is where you where physically when you started the treatment. Neuropathy is Steve's most problematic in the long run. The rest are only temporary.

So Steve was given a Grade of 2 (Because of the neuropathy), the doctor would have graded him a 3 but he wants to see what one more month will do, plus he knows Steve is willing to continue.

Steve and I thought the pomalidomide was making his neuropathy worse, but the doctor said its not known to do that.  So it seems that the sleep deprivation only intensifies the existing neuropathy, which is actually a better reason then the Pomalidomide causing it. Chemo induced neuropathy actually causes permanent damage. Although maybe its the other side effect, burning and tingling….listed below.

He also suffers from insomnia because of the dex, and then on top of that you have the nights when he suffers from many, many muscle cramp attacks, which magnifies his fatigue.

Now we all know what its like to be tired, to have a bad night of sleep and know how we feel the next day. But I don't think we can truly understand how he feels, unless you are one of those who has a condition that fatigue is associated with.

Here are just a few of the "known" side effects of Pomalidomide:
(the yes means he has)

Greater than 10% chance of happening

• Decrease in the number of cells that help your blood to clot (Yes)
• Changes on Bowel movement
• Cough
• A decrease in the cells carrying oxygen to your body (Yes)
• Decreased Appetite 
• Fever (once)
• A low number of white blood cells (Yes)
• Muscle Cramps (Oh Yeah)
• Nausea
• Pain (Some)
• Pneumonia
• Shortness of breath (Yes)
• Swelling including arms and legs
• Tiredness (Yes)

Between 1-10% chance of happening

• Infection
• Dizziness (Yes)
• Vomiting
• Rash
• Abnormal shaking
• Sore throat
• Changes in sensation including decreased sense of touch (Yes)
• Burning sensation, or tingling (sounds like neuropathy to me!) (Yes)
• Kidney not working well
• Confusion (yep it's true :-) ) (Yes)
• Abnormal Blood tests (Yes)
• Feeling less alert
• Blood clots in legs or lungs
• Difficulty in passing urine
• Itching
• Pain

Some of the more serious ones, but with a 0.1-1% chance of happening

• New cancers
• Inflammation of lungs
• Tumor lysis syndrome

Here are just a few of the "known" side effects of Dexamethasone:

• Infection
• Insomnia (Yes)
• Seizures
• Muscle Weakness (Yes)
• Irritability and mood swings (Yes) (Yes) (Yes)
• Weight gain (Yes)
• Increased appetite (Yes) (Yes)
• Diabetes
• High Blood pressure
• Thromboembolism (blood clots)
• Peptic Ulcers
• Pancreatitis
• Infection in mouth
• Fluid retention

So you say, how come you are taking these drugs? I can only ask you, what would you do? When the only options you have are treat the cancer or die. We choose to treat the cancer. Now I am definitely not leaving the Lord out of the equation. But I do recognize that the Lord has given us an intellect along with our faith. We are to use them together in all areas of life. He can instantaneously heal Steve any time he sovereignly decides too. Or he may use the gift of medicine to help us. Either way we trust Him in all things. 

We don't have his latest m-spike number yet, but I'll post it as soon as we get it,

Please pray for Julie, Rosemary, Michael, Natalie, Debra, Rosemarie, Skip, Jim, Marcie and Earl.

God's Blessing to you all!

We are so richly blessed in Jesus!

Mrs. L