Been A While

Hello All,

Life has been very busy. Many family gatherings, work, home repairs and projects. I didn't realize how long it was since I last posted. So sorry if you have been checking, only to see the same post over and over!
Steve has remained stable since May. The last three m-spikes were: 1.3, 1.3 and 1.2 (the 1.2 is June's and a nice surprise). So the only thing of concern that I can really report is the frequent swelling Steve has in his right ankle and foot and his proclivity to get finger infections. The swelling didn't start occurring until after the pneumonia and the infections seem to happen so easily, any opening in the skin gives the germs an opportunity to grow. He gets so much pleasure working in his garage shop on various projects that I fear he will continue to be at risk for cuts and burns. So please pray for both the swelling and infections to be minimal.

There are others who are in great need of prayer….so please include them to.

Julie, Tana, Cheryl, Wint, Doris, John, Vi, Maricella and Natalie

As always God's blessing on you and yours!

A very grateful,

Mrs. L

I Was Ready To Move On

It took a while to get the lab results for March. I actually received them while Steve was out of town. I didn't tell him the results until he came back…..his number went up. He was at 1.3 and then it went up to 1.6. he was convinced it was because he missed 4 doses while he was in the hospital. I believed the treatment was no longer working.

So when we went to see the doctor on April 23rd, I was ready to discuss next treatment options.
The nurse knew how I felt and told me she would call us with the lab results, as soon as they came in. If they were bad I wanted to begin the next step ASAP, and not wait until our usual monthly appointment.

Well, my husband received a call on Wednesday, the m-spike went down to 1.3, again! He got what he wanted, well what we both wanted. I'm just discouraged that we have been above 1.0 the whole time and the lowest was only 1.1 way back in December.

I know I'm just feeling overwhelmed from the many life changes that have occurred lately, and just eager for some really, really, really good news. I need the Lord's help in being content, and remembering we are so blessed in so many ways.

I looked up the average life expectancy for men and women 115 years ago (1900) according to the statistics we would both be dead by now!

March Sadness

Oh boy….where to start. Steve's last blood m-spike test came back at 1.3….same as the month before and there was no m-spike in the urine. Acceptable news…we just wanted to see a reduction in his m-spike. I found out the results the day Steve was admitted into the hospital with pneumonia (I didn't tell him until he was feeling better) on March 10th.

This came on suddenly and the ER experience was very unsettling with additional medical "events". During his stay I got sick with something that has been going around……I was too sick to pick him up when he was discharged 3 days later (Thank You Bob!) He was given instructions to receive IV antibiotics for 6 days at the infusion center. Once again Thank You Richard!

Just prior to all of this my sister Rosemary recently began home hospice care. She was battling brain cancer which resulted from her breast cancer returning. I was determined to see her but with all that was happening I was becoming overwhelmed and extremely tired. I did see her 2 more times before she passed away on March 23rd.

I have to pause here and mention the outstanding care her four children provided her. Not just when she was in hospice but throughout her battle. Kristen, her second oldest, put everything in her life aside and became her primary caregiver. She took the time to understand every chemotherapy drug, radiation, gamma-knife, prescription drug and side effect her mother was to receive and experience. I believe this really helped Rosemary live years longer than others in her situation.

Two days after Rosemary died we learned Steve had infection on his arm caused by a spider bite, which he got cutting down a bush (He was suppose to be resting!) He was diagnosed with cellulitis. Apparently it can become deadly if not treated in time. More antibiotics…..

So….when we went to UCLA on March 26th, we were both worn out and discouraged. We believed the Doctor would change his treatment because of the last test. THANKFULLY he didn't. This was a really bright spot in a long month of heartache and hardship. Both the doctor and the clinical coordinator were unavailable, so Steve saw a different nurse and was given the next month's dosage of pomalidomide. I forgot to mention that while Steve was in the hospital he missed four days of pomalidomide, hopefully this will not reflect in the next lab report!

Rosemary Dunn

For those who prayed for my sister, I thank you, her children thank you and my family thanks you. She will be missed so very much.

Please remember to pray for Julie, Maricella, Natalie, Cheryl and Tana. 

Love,

Deanna

Reminded To Keep Trusting God

Being part of a clinical trial has shown me to expect the unexpected. Very unpredictable!
Below is the chart I made to follow Steve's progress. I realize its a bit hard to read (I have to zoom in a little) put it really helps me since I like to see history.

We were concerned when we learned in late January that the m-spike went up (1.5)…and we were very eager to see the results of the 1/30 Labs. We found out in late February the m-spike went back down to 1.3. For us this was great news. As long as Steve takes the steroids with the pomalidomide then it works! Wonderful!

So as you can imagine we went to our last visit (2/27) feeling pretty good! But along with the increase in January…there was monoclonal protein in the 24 hour urine test for the very first time ever. I kinda wondered about it, but nothing was said so I let it go. (The m-spike can be measured in the blood and in the urine. It all has to do with kappa and lambda light & heavy chains. The 24 hour urine test reveals an overage of monoclonal protein which spills over into the urine. If it continues it will mean the disease is progressing into a new direction. At least that is my understanding.)

So back to our visit on Friday, just as we entered the clinic to be seen by the nurse, Dr S. spots us and says "I need to see that guy today"! Uh oh.

He did not like seeing the m-spike in the urine and said he wanted to take Steve off the trial and go to something new. What! He wants to see a 50% reduction in Steve's total m-spike. After discussing it for a few minutes, I asked about the last urine test, what did it show? He didn't have the information and snapped at the interns to go find "R" our nurse. He left the room mumbling and didn't come back. R came in and told us the urine test came back at ZERO! So Steve started cycle 7 on Friday, she conveyed to us that if the next test didn't show a bigger decrease, then Dr S. wants Steve off the trial and onto something new.

I asked the nurse if we had any say in the matter and she said yes. But I realize that we need to talk to the doctor and find out why he is so concerned, what hasn't he told us? Now I'm just speculating and that's no good.

Early February the grandkids came down from Rail Road Flats (hometown) and stayed for 4 days. I have to say, spending time with these precious children really helped us both. It filled our tanks, so to speak and gave us a chance to forget about all this cancer stuff and focus on loving, hugging and squeezing these 2 cuties! Number 3 is due in July!

Say Cheese!

Abigale

Gabriel

And if you would, please pray for Maricella, Natalie, Julie, Cheryl, Rosemary,Tana and Skip.

Always Thankful, Always Praising the Lord!

Mrs. L

And Proud of it!

Who Knew?

Steve had four weeks free of steroids in December. It was Grand! Saw the doctor on January 2nd and then got the lab results 3 weeks later. His m-spike went UP from 1.1 to 1.5. :-(

The plan was for him to be off the steroids for one cycle and then reintroduce at a lower dose. When we learned the m-spike was up we thought…"well he needs the steroids after all". No problem, he's been taking 20mg for the past month.

On Friday, January 30, we went for the next follow-up and from the labs they drew we'll find out if the lower steroid dose is working. If his m-spike is up then he will be dropped from the trial. They won't increase it back up to 40mg, according to the clinical trial protocols. 

If that is the case then we will see if our health insurance will pay for the pomalidomide; and have him take it with the 40mg of dexamethasone. If it works WONDERFUL, if it doesn't it means the pomalidmoide is no longer working and he'll have to try something new. 

We will know in about a week. Hopefully!

Please pray for Rosemary and her kids, her time is short. Pray for Natalie, Julie, Earl, Tana, Maricella, Jim and Skip. 

Love Mrs. L

Labs Do Differ!

Just a quick post to update you all…. my vertigo is acting up.

We learned that the November M-Spike was actually 1.2, and NOT 0.9. So when we received the December Report and the M-spike was 1.1 we thought the treatment stopped working.

A little digression here……… when we went to UCLA on 11/7, they took enough blood for both UCLA and Celgene to run the tests, but Steve and I only saw the results from UCLA and never thought it could be different from the Celgene labs. Therefore, when we learned what the Celgene lab results were in November, everything made sense. From now on we should ONLY be looking at the Celegene lab results!

We were so relieved!!! Praise the Lord!

So while the downward trend is slowing down it is nothing to be worried about. We have been there before!

Mrs. L

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!