Dear Reader,
2017 was a very challenging year for Steve. As I think back over the last 2 years trying to remember what happened and when, I can't even recall the names of the drugs used on the last clinical trial. I believe it was back in June 2017, he started the new treatment. Immediately he encountered issues due to some underlying heart problems we didn't know anything about. One problem led to another, and another. His energy level decreased, his pain increased and his overall well being declined. But Steve continued to get up every day, and get the most out of life that he could.
It wasn't Myeloma that ended his life, but it was a contributing factor due to the many years of treatments that compromised his immune system. One day in October, Steve was bitten by a mosquito. In insignificant moment that had deadly consequences. This mosquito was a carrier for the West Nile Virus, which invaded his nervous system, causing full body paralysis. Steve died of respiratory failure. In all the years of dealing with cancer, we knew the risks of catching colds, flus, pneumonia, infections...but not WNV.
He died in November, one month before his 72nd birthday. I miss him so much. As I have endeavored to accept my new life without him, I have learned to understand that the Lord's ways are not my ways. But grieving is hard. Uncertainty, loneliness and sadness are my constant companions. All three are hard to endure. I lean on God for everything, knowing he is my ever-present help.
This blog represents the trials and the joys of living. Live life to the fullest. Don't assume tomorrow belongs to you or your loved ones. Make sure you have settled your estate and have a will. Let your family know if you want to be buried or cremated. Don't avoid the hard conversations. They are necessary. Forgive, love and enjoy your life. Trust God in all things and prayerfully I will see you in heaven with our Lord and those who have gone before us, like Steve.
Mrs. L
Wednesday, April 4, 2018
Sunday, March 13, 2016
March Update 2016
Hi All,
So much to report on. Right now I am sitting in the hospital room with Steve. I brought him to the Emergency Room 3 days ago and learned he has pneumonia. Since being here there have been some additional problems, one being atrial fibrillation. Thankfully the care here at LCOM is phenomenal. He has been given breathing treatments, antibiotics, heart med's; all to help him get well.
Last night was pretty bad for him though. He is so sleep deprived, that the first night after taking the steroids (last night) was made worse being here. I think he got 1 hour of sleep. When I arrived here this morning he was in a lot of pain, delusional, and extremely agitated. So I have been doing everything I can to keep his room quiet and him calm so he can get some sleep.
He was scheduled to take a "respiratory walk" to see if he was ready to go home. But after getting here, I told them no way. He needs to feel better and think clearly before he starts walking around the ward. Prayerfully he will get over the tiredness and feel much better tomorrow so he can pass the "respiratory walk" and then come home, even with the oxygen.
Before the pneumonia Steve had been dealing with postherpetic neuralgia (shingles pain) and edema that comes and goes. It took 6 visits to the doctors before he was put on a pain medicine strong enough to stop the pain attacks in his head. Now there is just a chronic burning pain that diminishes with the medicine......we are hoping the pain will be completely gone soon. It's already been 3 months.
His last myeloma test revealed a lower M-spike....so we now know the lower dose of pomalidomide is working! Praise the Lord.
As always please pray for our friends.....
Julie, Cheryl, Natalie, Peanut, Doris and Jim.
And keep looking to the Lord for everything. He is a gracious and loving Father.
Mrs. L.
So much to report on. Right now I am sitting in the hospital room with Steve. I brought him to the Emergency Room 3 days ago and learned he has pneumonia. Since being here there have been some additional problems, one being atrial fibrillation. Thankfully the care here at LCOM is phenomenal. He has been given breathing treatments, antibiotics, heart med's; all to help him get well.
Last night was pretty bad for him though. He is so sleep deprived, that the first night after taking the steroids (last night) was made worse being here. I think he got 1 hour of sleep. When I arrived here this morning he was in a lot of pain, delusional, and extremely agitated. So I have been doing everything I can to keep his room quiet and him calm so he can get some sleep.
He was scheduled to take a "respiratory walk" to see if he was ready to go home. But after getting here, I told them no way. He needs to feel better and think clearly before he starts walking around the ward. Prayerfully he will get over the tiredness and feel much better tomorrow so he can pass the "respiratory walk" and then come home, even with the oxygen.
Before the pneumonia Steve had been dealing with postherpetic neuralgia (shingles pain) and edema that comes and goes. It took 6 visits to the doctors before he was put on a pain medicine strong enough to stop the pain attacks in his head. Now there is just a chronic burning pain that diminishes with the medicine......we are hoping the pain will be completely gone soon. It's already been 3 months.
His last myeloma test revealed a lower M-spike....so we now know the lower dose of pomalidomide is working! Praise the Lord.
As always please pray for our friends.....
Julie, Cheryl, Natalie, Peanut, Doris and Jim.
And keep looking to the Lord for everything. He is a gracious and loving Father.
Mrs. L.
Saturday, January 23, 2016
January Update
I always have to look back at my last post to see where I left off. When I last wrote I mentioned that Steve was just diagnosed with shingles. Little did we know how bad shingles could get. I mean BAD, REALLY BAD. The blisters were very painful, but it wasn't until Steve started experiencing pain "attacks" that he had finally come to a point that he didn't think he could continue living with that type of pain.
The pain attacks would cause him to scream and cry out, desperately looking for relief. They could last for up to 8 excruciating minutes, several times a day (or night). He described it as if someone was holding a blow torch to his head, neck and ear. We were both tested through this experience. After several doctor appointments and one ER visit Steve was finally given some pain medicine that helped him to handle the attacks, leaving him with more of a burning sensation throughout the day.
Soon after getting relief from the shingles, the edema came back in both of his legs. This time we are not sure why. He started the diuretics and I hope we will see some results soon. For the time being he needs to stay off of his feet as much as possible (have you ever tried to keep a toddler down) that's what it's like with him!
I forgot to share with everyone the newest family member to join us here at our abode!
Her name is Cindy and she is quite adorable! Although I think our dog BB is bit obsessed with her!
This was my present to Steve for his birthday……..I know, why a hamster. What else do you give a man who has everything? (He is a big softy and actually loves the little thing)
Oh I forgot to mention how the cancer treatment is going…..well the preliminary tests results we have show the lower dose may be working! Praise the Lord.
Please continue to pray for Jim, Peanut, Maricella, Natalie, Julie, Doris, Jim and Cheryl!
Blessings to all!
Deanna
The pain attacks would cause him to scream and cry out, desperately looking for relief. They could last for up to 8 excruciating minutes, several times a day (or night). He described it as if someone was holding a blow torch to his head, neck and ear. We were both tested through this experience. After several doctor appointments and one ER visit Steve was finally given some pain medicine that helped him to handle the attacks, leaving him with more of a burning sensation throughout the day.
Soon after getting relief from the shingles, the edema came back in both of his legs. This time we are not sure why. He started the diuretics and I hope we will see some results soon. For the time being he needs to stay off of his feet as much as possible (have you ever tried to keep a toddler down) that's what it's like with him!
I forgot to share with everyone the newest family member to join us here at our abode!
Her name is Cindy and she is quite adorable! Although I think our dog BB is bit obsessed with her!
This was my present to Steve for his birthday……..I know, why a hamster. What else do you give a man who has everything? (He is a big softy and actually loves the little thing)
 |
| Cindy |
 |
| BB Meeting Cindy |
Please continue to pray for Jim, Peanut, Maricella, Natalie, Julie, Doris, Jim and Cheryl!
Blessings to all!
Deanna
Tuesday, December 22, 2015
Merry Christmas
Hello All,
First I want to wish everyone a very Merry Christmas and pray your Christmas is full of the Lord's peace, mercy and grace. We are thankful for another year together and another year of serving the Lord!
Steve just celebrated a very important birthday….#70!! The Lord provided great weather (thank you to those who prayed the rain would stay away) and used my limited hosting skills and abilities to put together a party in which my adorable husband was greatly blessed. Thank you to our friends and family who were able to come and celebrate the life of my hubby!!
Last time I wrote about the challenges Steve was having and how the oncologist wanted him to see a pulmonologist to rule out any lung issues. Well he did and has has….no lung issues. After talking things over we asked if Steve could still take the pomalidomide but at a lower dose, maybe the side effects would be lessened and he would still get the benefits of the chemo. He was approved and started the lower does on 12/4. We are still waiting for Steve's M-spike results from last month. We expect it to be higher since he missed 2 weeks of treatment…but we had to do what we did and feel the increase will be minimal.
Oh and the latest in the life of a chronically ill person…..Steve now has shingles! Yep…shingles. The rash and blisters are on the right side of his neck, hairline, ear, cheek and collarbone area. The pain was terrible yesterday….but today was much better. He is on 3 new medications! Hopefully he will have a mild case, will heal quickly and not have any chronic pain issues afterward.
Many, many blessings to you and your loved ones. As always please keep the following in your prayers…they too are under going health problems. Julie, Tana, Natalie, Jim, Cheryl, Cheryl, Doris, and Maricella.
Love to all,
Mr & Mrs. L.
First I want to wish everyone a very Merry Christmas and pray your Christmas is full of the Lord's peace, mercy and grace. We are thankful for another year together and another year of serving the Lord!
Steve just celebrated a very important birthday….#70!! The Lord provided great weather (thank you to those who prayed the rain would stay away) and used my limited hosting skills and abilities to put together a party in which my adorable husband was greatly blessed. Thank you to our friends and family who were able to come and celebrate the life of my hubby!!
Zoom in on his shirt!
Last time I wrote about the challenges Steve was having and how the oncologist wanted him to see a pulmonologist to rule out any lung issues. Well he did and has has….no lung issues. After talking things over we asked if Steve could still take the pomalidomide but at a lower dose, maybe the side effects would be lessened and he would still get the benefits of the chemo. He was approved and started the lower does on 12/4. We are still waiting for Steve's M-spike results from last month. We expect it to be higher since he missed 2 weeks of treatment…but we had to do what we did and feel the increase will be minimal.
Oh and the latest in the life of a chronically ill person…..Steve now has shingles! Yep…shingles. The rash and blisters are on the right side of his neck, hairline, ear, cheek and collarbone area. The pain was terrible yesterday….but today was much better. He is on 3 new medications! Hopefully he will have a mild case, will heal quickly and not have any chronic pain issues afterward.
Many, many blessings to you and your loved ones. As always please keep the following in your prayers…they too are under going health problems. Julie, Tana, Natalie, Jim, Cheryl, Cheryl, Doris, and Maricella.
Love to all,
Mr & Mrs. L.
Monday, November 16, 2015
Latest Update
Hello All……Since my last post things have been a bit rough. Once the edema went away, Steve began experiencing some scary symptoms.
While we were in Tahoe he had what we would describe as angina attacks. When we got back home his symptoms changed to fevers, low oxygen levels, night sweats, shortness of breath. We felt it was his heart and so we first the doctors and then to the ER. They ran all kinds of test to rule out any heart or arterial problems, as well as more lung tests and they could not find any cause. So they chalked it up to a viral infection.
But…once he resumed taking his pomalidomide the fevers, low oxygen (81-82), shortness of breath and night sweats resumed. This led is to believe the pomalidomide is the reason…I even found a study on the Internet supporting our theory.
So I had Steve stop the pomalidomide on Friday night, 3 days a go……Since then his oxygen has improved, then have been no fevers, his stamina has improved and no more night sweats.
We believe it it time to change treatments but the doctor wants to send him to a pulmonologist first to rule out another cause. Which is fine…..but Steve will stay off the pomalidomide until we know otherwise. Please pray for wisdom for the doctor and that if there is any new health issue that the doctors will find it. Most importantly we need guidance on what the next treatment should be.
Thank for your prayers and please continue to pray for Julie, Cheryl, Griselda, Natalie, Maricella, Doris, Jim and Tana.
Love Always…
Mrs. L
While we were in Tahoe he had what we would describe as angina attacks. When we got back home his symptoms changed to fevers, low oxygen levels, night sweats, shortness of breath. We felt it was his heart and so we first the doctors and then to the ER. They ran all kinds of test to rule out any heart or arterial problems, as well as more lung tests and they could not find any cause. So they chalked it up to a viral infection.
But…once he resumed taking his pomalidomide the fevers, low oxygen (81-82), shortness of breath and night sweats resumed. This led is to believe the pomalidomide is the reason…I even found a study on the Internet supporting our theory.
So I had Steve stop the pomalidomide on Friday night, 3 days a go……Since then his oxygen has improved, then have been no fevers, his stamina has improved and no more night sweats.
We believe it it time to change treatments but the doctor wants to send him to a pulmonologist first to rule out another cause. Which is fine…..but Steve will stay off the pomalidomide until we know otherwise. Please pray for wisdom for the doctor and that if there is any new health issue that the doctors will find it. Most importantly we need guidance on what the next treatment should be.
Thank for your prayers and please continue to pray for Julie, Cheryl, Griselda, Natalie, Maricella, Doris, Jim and Tana.
Love Always…
Mrs. L
 |
| Papa & Rebekah |
Thursday, September 24, 2015
Sunday, September 6, 2015
Happy Labor Day!
Steve has been doing pretty good over all. After a year now (can't believe it) of being on the clinical trial we have seen a cyclical response with his medications….goes like this...
Friday Nights: He takes the steroid, dexamethasone. Sleeps about 6 hrs without cramps, with cramps maybe 4.
Saturday: High levels of energy, very talkative, distracted easily, and mood can turn on a dime. Not the time to make jokes that would easily be funny on say Thursday or Friday! Sleeps about 4 hours.
Sunday: Feels great early in the morning, but by 11am he is fatigued and not feeling his best.
Monday: Very dizzy throughout the day, bouts of fatigue, but he presses on. Sleeps about 5 to 6 hours.
Tuesday: Same as Monday.
Wednesday: Same as Monday but energy increases a bit.
Thursday and Friday: The 2 best days of the week. He feels pretty good and gets more rest. He's back to his "old" self.
For the past 2 weeks he has been experiencing severe edema in his right foot and ankle and moderately in his left foot and ankle. He saw his doctor on Thursday about this and had an EKG, Chest X-ray, Urinalysis, Vials of blood taken for a myriad of different tests. We are hoping to find out the cause of the edema.
He started experiencing swelling right after his bout with pneumonia back in March. But never this bad.
His M-Spike went from 1.2 in June to 1.3 in July and down to 1.1 for August. Not the greatest results but his disease is stable and that's not a bad place to be.
In July we welcomed our third grandchild, Rebekah!! And we had the pleasure of Gabriel and Abigale staying with us for a week!
Please keep praying for Steve and those I listed below. And if you would add my son Daniel to your list. On September 21st he begins 16 weeks of training at the Academy to become a Corrections Officer with the state of California. It will be very arduous for him and hard on his wife and kids, who will see less of him during this time.
Thanks so much and God Bless you richly!
Julie, Natalie, Jim, Doris, Maricella, Wint, Cheryl, & Tana
Love Deanna
AKA Mrs. L
Friday Nights: He takes the steroid, dexamethasone. Sleeps about 6 hrs without cramps, with cramps maybe 4.
Saturday: High levels of energy, very talkative, distracted easily, and mood can turn on a dime. Not the time to make jokes that would easily be funny on say Thursday or Friday! Sleeps about 4 hours.
Sunday: Feels great early in the morning, but by 11am he is fatigued and not feeling his best.
Monday: Very dizzy throughout the day, bouts of fatigue, but he presses on. Sleeps about 5 to 6 hours.
Tuesday: Same as Monday.
Wednesday: Same as Monday but energy increases a bit.
Thursday and Friday: The 2 best days of the week. He feels pretty good and gets more rest. He's back to his "old" self.
For the past 2 weeks he has been experiencing severe edema in his right foot and ankle and moderately in his left foot and ankle. He saw his doctor on Thursday about this and had an EKG, Chest X-ray, Urinalysis, Vials of blood taken for a myriad of different tests. We are hoping to find out the cause of the edema.
He started experiencing swelling right after his bout with pneumonia back in March. But never this bad.
His M-Spike went from 1.2 in June to 1.3 in July and down to 1.1 for August. Not the greatest results but his disease is stable and that's not a bad place to be.
In July we welcomed our third grandchild, Rebekah!! And we had the pleasure of Gabriel and Abigale staying with us for a week!
Please keep praying for Steve and those I listed below. And if you would add my son Daniel to your list. On September 21st he begins 16 weeks of training at the Academy to become a Corrections Officer with the state of California. It will be very arduous for him and hard on his wife and kids, who will see less of him during this time.
Thanks so much and God Bless you richly!
Julie, Natalie, Jim, Doris, Maricella, Wint, Cheryl, & Tana
Love Deanna
AKA Mrs. L
Saturday, July 11, 2015
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
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
Saturday, May 2, 2015
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!
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!
Sunday, March 29, 2015
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!
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.
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 |
Please remember to pray for Julie, Maricella, Natalie, Cheryl and Tana.
Love,
Deanna
Thursday, March 5, 2015
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.
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!
Monday, February 2, 2015
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
Saturday, January 3, 2015
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
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
Monday, December 22, 2014
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!
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!
Sunday, December 21, 2014
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
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
Friday, December 5, 2014
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
Saturday, November 22, 2014
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!
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!
Sunday, November 16, 2014
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)
- 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
Monday, October 20, 2014
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 ………
Or…….
…depending on what he's doing!
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 |
Thursday, October 2, 2014
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!
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.
Subscribe to:
Posts (Atom)