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.

Young Widow in Need

A young woman came to Hope Chapel for the Saturday night service a few weeks ago looking for comfort and help. Her husband was killed in a car crash the night before. They have 2 small children.

If you want to help the family with the funeral cost click the link below.

http://www.gofundme.com/douglasvillalta

Please keep her and her children in your prayers.

Day 12

Tonight Steve takes his 12th dose of Pomalidomide. It's not been the easiest time. The worst side effect has been the cramps he gets. Mostly in the lower legs, ankles and feet. One particular night he was up almost every hour, screaming at times so loud you would think he was being tortured. I've felt so helpless. He's been handling it all so well, God Bless him.

A Little Humor for the Hubby

A few days ago Steve checked online to see what he could find out from other patients, maybe some ideas on how to alleviate the side effects. He came across several mentions of yellow mustard and Gatorade. We went out the next day and bought 2 bottles of mustard (one for his car) and some Gatorade. He approached it with the mindset of prevention versus treatment.

So he began taking several teaspoons of mustard and drinking a bottle of Gatorade every day. The cramping episodes have almost completely stopped! When he starts to feel a cramp coming on he immediately takes the mustard. So far so good. As I write this I'm feeling so grateful that he has found something to help him.

The other side effects could be dealt with long term….but the cramps….no way could anyone endure such pain, as frequently and unexpectedly, along with the lack of sleep (due to the timing of most of them), and continue on the treatment even if it was working.

So as always our prayer is for the treatment to work and there would be minimal side effects. Thank you for your faithfulness and love. We are so blessed to belong to the family of God, the church of Jesus Christ!

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

APPROVED!!

USS IOWA VISIT

Well it has been a long month! After our visit on August 15th….we waited for the Insurance to approve  the request, which took a few weeks. After he was approved, Steve needed to complete and "pass" 4 tests; a Bone Marrow Biopsy, a Urine Test, Full Lab Tests and a Bone Survey before the Manufacturer, Celgene would approve him.

We went in on 9/3 for all 4 tests…….but just before the Bone Marrow Biopsy we were speaking with the Nurse Practitioner (Rose) who is the Clinical Research Coordinator, about what treatments Steve had in the past. Her previous understanding of his treatments was incorrect and based on the new information she felt that Steve would not be eligible for the trial:-(

So she held off on the Bone Marrow Biopsy and said she would contact Celgene and see what they had to say. After we left we felt fortunate that Steve was able to avoid a very painful test. One he didn't need if he couldn't be a part of the trial. Then we waited to hear from Rose.

Rose called us the next day and surprisingly Celegene said YES! Steve was scheduled on Friday, 9/5 for the biopsy and said he would be okay, no need for me to go.

Now you have to understand something……..I have had many sleepless nights worrying about Steve getting this biopsy without sedation…….I know his pain tolerance is low and I hated to think about him going through this procedure….so when he said "I'll ride my motorcycle to UCLA, get there quickly and be home as soon as it is over, so don't worry about me." I cringed inside. I was anxious all morning.

He told me later that everything was okay until she began the aspiration (pulling the bone marrow out of the bone) then it became extremely painful, she had to do this TWICE! But he got through it and I felt so much better that it was over! Thank you Lord!

Now to today…….we got a call on Tuesday from Rose, Steve passed all the tests and she wanted to know if we could come in on Friday? Absolutely! Today we went to UCLA for the new medicine, more lab work and the results of his previous tests.

Results:

• The Bone Survey-Outstanding!
• The Blood work showed an increase of his M-Spike from 1.2 to 1.6 (Cancer growing, Ugh)
• The Urine tests revealed his Kappa Light Chain is high: 24.01 (I need to learn more about why this is important)
• The Bone Marrow Biopsy has 2 parts: the Plasma cell count (cancer total) and the FISH or Chromosome test. The Cancer count is now at 30%, up from 15-18% 3 months ago. This is affecting his Red Blood Cell production. This number unnerved us a bit.

The FISH tests takes several weeks to come back. 

So we received the new medicine and Steve will start taking it tonight and then we go back to UCLA in 4 weeks. 

I know this is a long post….but in between all the waiting and tests, Steve and I both were sick……everything piled up! So we have been playing catch up with many things.

Our prayer requests is the Lord will bless this new medicine. Steve has never had a Complete Response (Myeloma Remission Terminology) with any of his treatments, only a Partial Response. We are going BIG, we are asking for a Complete Response! 

So PRAY, PRAY, PRAY and when you are done PRAYING…..PRAY some more!

Also pray for Julie, Rosemary, Natalie, Maricella, Marcie, Debbie, Jim and Michael.

Thank you for your Love, for your Support and your many Prayers!

Mrs. L

Big Day At UCLA

Papa and B.B.

About 3 weeks ago we received the authorization for Steve to go to UCLA for a consultation with his transplant doctor. There was some confusion about what labs needed to be done, etc…...…long story short. Referral good! Appointment made! Saw doctor yesterday!

The one thing we didn't want to hear was "I think Steve's best bet is to do another stem cell transplant".

Thankfully, the doctor had something else in mind. He wants Steve to be a part of a clinical trial for Pomalidomide, a cousin to Revlimid. The clinical trial is focusing on patients with relapsed or refractory Multiple Myeloma following Lenalidomide (Revlimid) treatment. That would be Steve!

They are only accepting FIVE people for this study at UCLA! Only 5! Did I say only 5? What timing………….this regimen is so easy to do, taking pills at home! Who would rather have a big needle stuck in your arm every week, and sit there for 2-4 hours as you get your treatment? Not me!

There are 3 things that can stop him from being a part of this trial.

1) Our Insurance Denies the Request

2) Clinical Trial Researchers reject Steve

3) The Lord

So you know what we want to do. IF this is the right treatment, we want to be a part of this study….IF it is not the right one we ask the Lord to close the door and show us another way.

If he is approved there will be a screening period of 28 days before he would begin the treatment.

This means a lot of tests and they all have to be done at UCLA! (During screening and after) This would include the Bone Marrow Biopsy. And unlike all the ones Steve has had, there they do in the clinic, no sedation, just a topical. (Although the offer of a valium sounded good) .

Now I don't' want to leave you thinking that this treatment is risk free. None of them are. I just finished reading some of the possible side effects. We just have to make the wisest decision, be on alert for any problems, and as always remember the Lord is in control.

God bless you all!

Please pray for Julie, Rosemary, Maricella, Bethany, Marcie, Debbie, and George!

Love,

Mrs. L

Off Topic-Garlic

Something to share that I thought was pretty neat. Last year I planted some garlic cloves hoping to keep out those pesky bugs in my vegetable garden. So my bug deterrent (which didn't work so well) turned out to be a harvest of new garlic!

I harvested them in July after learning when to dig them up and that garlic needs to be cured before using. This gives them their long shelf life.

Amazing….to bad we can't be "cured" and have a long shelf life…….or maybe we do? Thank you Lord for eternal life through your Son Jesus Christ!

Bear Gone!!

Last Sunday we discovered our very precious wooden bear was stolen from our front yard. Very sad day in the Liscom home.:-( We bought the bear on our honeymoon 8 years ago.

If found please return to 5112 Red Door Road!!!

Check One

Check 1. Referral to UCLA Approved. Thank you Lord!!!!!

Waiting for a call from UCLA to make appointment.

Check 2 Will be appointment made.

Palliative Care Program

Well in essence that is what the Comprehensive Care Clinic is all about. Not knowing what to expect led us to believe the worst, that maybe Steve would not be referred to UCLA. The CCC is a group that was put together over a year ago and are always part of a patients care once they have been referred for a transplant of any kind.

We talked about what steps Steve would like to take next, the importance of an Advanced Directive and many other things. The important thing is Steve left there feeling really good about the doctor and what we learned.

We are still waiting for the referral to go to UCLA to be approved. In the mean time it's just living as usual……..waiting on the Lord. No better place to be.

Please keep praying for Natalie, Julie, Bethany and her Mom Tana and for my sister Rosemary.

Love always,

Deanna

New Process for Steve

Were not sure if the new process is because of the insurance change or because Steve's relapse starts something new, but today we are going to a new doctor. Steve's "care" will now be coordinated with in a comprehensive care program through Health Care Partners.

Instead of his local doctor being able to refer him directly to UCLA, we have to go through the CCP. Steve's appointment is at 3:00. We are not to sure what to expect.

On a good note, his bone survey came back as stable. No changes!!! Although we did find out something that we either missed or were never told. Steve has some lesions in his skull. They don't hurt and their not really a bad thing, it was just a little unnerving to find out.

Well…..we are leaving now to go see the new Doctor. Keep us in prayer!

Love Deanna

It's Back

Yesterday Steve and I went to see his oncologist for the bone marrow biopsy results. While we didn't hear what we had hoped for, what we did hear was not as bad as it could have been.

There was a change in chromosome 20 and this isn't that big of a deal. If chromosome 17 had been affected then we would have a lot more to worry about.

The cancer levels in his bone marrow is at 15-18%. If you remember after his transplant the cancer levels had gone to zero. So Steve is being referred to UCLA once again, and he will see the doctor who was in change of his SCT. Revlimid is no longer working as it did so a new regimen will be prescribed.

Steve told a few months ago something very surprising. He said if he had to have another stem cell transplant he would do it. This completely surprised me after watching him go through it the first time.

But then its like a women who forgets the pain of childbirth because its replaced with the joy she experiences in the relationship she has with her new baby. She doesn't think about the pain when she decides to have another baby. She thinks of the joy the new child will bring.

Steve's forgotten the "experience" of the transplant because it's been replaced with the experience of living well again.

We are stronger today then we were 5 years ago and I give God the glory for what he has done in and through us. But still, pray for us, please.

Cancer is big but our God is Bigger!

Blogging Is Not Easy

Here I promised that I would keep the blog updated on a regular basis and once again I failed to keep my promise. I think it's because everyone who followed the blog, we would see at church and therefore knew Steve was doing well. He has been stable for all these months so I got lazy with the blog.

Well he is no longer stable. In February there was an up tick in Steve's M-spike. It went from .6 to .9. Doctor said not to worry because she sees this all the time. So we kinda waited a little anxiously for his next test in May. It too came back with a slight up tick. Now it was 1.2. So the doctor wanted to do a bone marrow biopsy and run mores tests. One being the FISH test; which would show if there were any new genetic mutations involving the chromosomes.

His follow-up appointment is on July 2nd. The only thing we know for sure is the Revlimid is not working as well as it had been.

So of course we covet your prayers and ask for God's grace and mercy. He has been so good to us in allowing Steve to do so well after his stem cell transplant.

Steve was coerced into opening a Facebook page but soon became disillusioned with the silliness of it all and doesn't do any more postings. But since I do not Facebook and never will, I'll have him post a link to the blog so our friends and family can follow along.

And I want to be a woman of my word, I will make it a habit to regularly update the blog so you will know the latest!

God bless you all and thank you for being there for Steve and I!

Steve at Sequoia National Park last week.