M-Spike Update December 5th

Well it wasn't what we were hoping for or even expected. Steve's M-spike went up from 0.9 to 1.1. There is one good number to report on and that is the other "marker" that is checked, the IGG continued to go down. The IGG is the plasma cell protein that has become monoclonal, cancerous. It went down from 1480 to 1300. Usually both markers go up or both go down, but this time one has increased and one has decreased?

I'm sure the doctor will have an understanding for why this has happened.

Yes, we are discouraged, and we are hoping this in an anomaly and not a sign of something bad. Please pray for good news at our next appointment.

God Bless you!

Steroid Free Has It's Benefits

It's been 2 weeks since Steve stopped taking the steroid with his pomalidomide. The cramps have almost completely stopped (a few hand cramps and one minor foot cramp)! This has resulted in both of us sleeping better, he's even stopped sleeping in the recliner! Nice to have his warm body next to me, especially in this weather!

Every night Steve makes notes on how he felt during the day and what symptoms he experienced. There is no rhyme or reason to it, but some days he feels pretty good, and on others he can feel lousy. He told me last night that for the first time he feels more like he use to, before he started the new treatment. That was our new normal and it was actually pretty good.

If he can continue with the pomalidomide without the steroid, then maybe life won't be as difficult as we experienced in Sept, Oct & Nov, and maybe we can start planning some short trips, have the grandkids stay with us, who knows!

We are still waiting for the test results from our last visit. Last time his m-spike was 0.9. We go back on 1/2/15…..pray the absence of the steroids don't result in the pomalidomode becoming ineffective.

Merry Christmas to everyone and don't forget to tell others about Jesus and his sacrifice for us!

Pray for Julie, Mike, Jim, Natalie, Rosemary, Skip, Matt, Marcie, Earl, Mary, Stephanie and the Persecuted Church.

Love,

From a very grateful christian and wife to Mr. L,

AKA

Deanna

Cycle 4 Is A Go

With the increase in side effects we thought that this month the doctor might take Steve off of his treatment based on our last conversation with him in November.

Steve had a somewhat better month and the only change that was made was to stop the steroid (after my inquiring of the possibility) to help with his moods, sleep deprivation and other unpleasant side effects he has been experiencing. Our first thought was maybe the dose could be reduced…..but the Clinical Trial protocols require a complete absence of the drug for a time and then reintroduce it at a lower dose.

We did this only because he has had such good results so far.

Now hopefully this will make for a more pleasant Christmas celebration! 

Unfortunately the worst side effect he gets is not from the steroid but from the Pomalidomide. They can be so painful, and take so much out of him. The most unpleasant episode happened on Thanksgiving. At one point his jaw locked up for a brief time. Very scary!

We are hopeful the lab work done today will reveal another drop in his m-spike, which we won't know for another 7-10days. Prayerfully a big drop!

Thank you so much for your prayers and the love you have shown us. We are blessed to be a part of God's family, through the work of his son Jesus Christ. 

Have a wonderful Christmas, we love you all.

Here is Steve with his early Birthday/Christmas present. I hardly ever see him anymore!

I never have to leave my recliner again!

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

Love,

The most blessed wife

Mrs. L

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

October 20th Update

We just received word that Steve's m-spike has dropped to 1.4! Praise the Lord!!!

Thank you for your prayers!!!

***************************************************************
Earlier today I posted the following:

Wanted to keep everyone updated. We went to UCLA on the 10th and received the next cycle of pills and found out a few things about clinical trials.

When we arrive at UCLA the first thing they do is draw some blood for a myriad of tests. Usually the tests are performed on site and by the time the doctor sees Steve he at least knows what the CBC results are. You know red and white blood cell count, platelets etc.

But now the blood is sent to a central lab, processed, and the results sent to Celgene (maker of Pomalidomide). They then forward the results to UCLA, which are reviewed by Steve's doctor who then signs off on them, and we finally get a copy.

So for us the waiting is a little longer. And you know its hard to be patient when you "live" for the next lab test.

And apparently its the doctors at Celegene who are guiding the treatment plan and making all the decisions. That was a little surprising. I kinda believed it was in conjunction with Steve's hematologist. But we were assured that if there was anything that required immediate attention, UCLA would be notified right away and could then direct the appropriate care.

One of the more disconcerting bits of new info came from Steve's labs tests from 9/12, the day he started the trial. Steve's m-spike had been going up by 0.1 every month since February. But in between 8/15 and 9/12 it went up by 0.6! So it would seem that the new treatment was started just as the Myeloma was stepping up its game, if I could use this metaphor.

So I am eager to see what the 10/10 tests results are. Please pray for an indicator that the new meds are working. It would give us both some peace of mind and encourage Steve to know all his suffering is not in vain.

During the day he is either ………

Sleepy

Or…….

Grumpy

…depending on what he's doing!

Tonight, End of Week 3

These past 3 weeks were filled with pain, fatigue, intermittent sleep, stress, irritability, anxiety, long days…..short nights, busyness, constant hunger; with both of us feeling some of these at different times. Although Steve has had a supply of energy (brought on by the steroids) that is not natural nor helpful for someone in his condition.

Now for the blessings, the gratefulness we both feel at the opportunity to have access to a treatment that  has proven effective for many with relapsed/refractory Multiple Myeloma cannot be said too many times. Our hope has always been that with all the advances made in treating Myeloma, there will always be another treatment ready for him if the current one fails.

Steve says he wants to live long enough to celebrate our 20th wedding anniversary. Which is in 2026! Gosh that is a long way away! He says these are the best years of his life! Wow, with all things considered I guess he finds living with me to be a good thing! LOL.

The amount of friends praying for us is sooooo encouraging! The strength we fell spiritually and emotionally is God given and relished. Our love for one another has grown, we are extremely grateful for each new day and trust in our Lord for his guidance and protection.

I hope Steve's week off proves to be a restful one!

So continue on we must! Next Friday we go to UCLA for labs and the next bottle of Pomalidomide.

And thank you to our new found friend and companion……..without you, sweet sleep would be very uncommon in our home!

Please pray for Julie, Natalie, Rosemary, Michael, Rosemarie, Debbie, Maricella, Jim, Skip, and Marcie.