Sorry it's taken so long to update everyone on what our next step is going to be. We found out Steve is ineligible for the clinical trial because of other cancer he had. We were actually relieved when we found out. We are willing to do what the doctors recommend but the clinical trial would have required so much from us and we just weren't ready for it.
The good news is that they will consider doing a stem cell transplant as long as they can get his cancer into remission. The STM's have proven to be very successful for many people, keeping their cancer in remission for many years with some not requiring any maintenance therapy.
Treatment #4 will begin sometime this week or early next week. It all depends on when we get all of his medications. The new treatment is actually a rather old treatment. It's an oral regimen with 3 different drugs, melphalan, prednisone, thalidomide (MPT). Both doctor's agree on this next course of treatment. If Steve can tolerate it he will have up to 6 cycles (28 days each) of MPT. This regimen can damage his stemm cells so they are treading cautiously so as not to eliminate Steve's chances for an STM. The doses will be low and they will monitor his blood weekly.
Due to the many possible side effects from all three drugs we are asking for everyone to prayer specifically that his body will tolerate the treament and he will have minimal, no zero side effects! Why not ask for what we really want, right? And more importantly he would have a complete response to the treatment (remission).
We know our God can heal anyone, at anytime, through any means he chooses. Maybe this is the means. We shall see.
Thanks again for your faithful prayers and love. Steve and I stand together, trusting our Father in Heaven, believing in his word and desiring to glorify Him with our lives!
Thursday, April 22, 2010
Wednesday, April 21, 2010
Long Over Due
Steve and I had a wonderful weekend visiting with his son Dane. The last time we visited Dane was in August of last year. Over 8 months ago. In fact during that trip Steve was complaining about how much his back hurt. We now know it was due to a compression fracture of the T6 vertebrae.
Steve is a very loving and devoted father. Just one of the reasons I admire him so much. He would regularly go to Reno every 3 to 4 months making sure he was there for Dane's birthday and Christmas and for the "Hot August Nights" car show.
Not seeing Dane for such a long period of time has been very hard for Steve. Even though he talks to Dane on the phone 3 or 4 times a week it just isn't the same as being there. We are very grateful that the Lord made a way for us to go and we are praying for many more opportunities!
Thursday, April 15, 2010
UCLA
Today was my first opportunity to get on the computer to update everyone on our visit to UCLA. These past two week have been really rough and things got tougher for me over the past 4 days. Sunday I received some bad news concerning a close family member and then on Monday I was rear ended by a very nice lady. The car wasn't damaged to bad but I sustained a neck injury commonly known as "whiplash".
I wanted our visit to UCLA to be as informative as possible. Here was our opportunity to ask the "expert" any question we could think of. But with the muscle relaxer I've been taking my brain was in a fog and all I wanted to do was sleep.
I'll keep it short. The doctor at UCLA wants Steve to be part of a clinical trial. The clinical trial is being conducted all over the United States and he will be the third patient that UCLA will have in the trial. Apparently Steve's options are a little more limited then most. He's already had 3 other kinds of treatment and too many different treatments can preclude you from a clinical trial.
Another preclusion factor is if the patient has had any other cancer in the past 3 years. He has, but as long as the cancer was confined AND the Insurance Company authorizes the treatment then Steve can participate. If this doesn't work there are other treatment options available. The good news is that if his cancer goes into remission he can still have a SCT.
We'll find out more on Monday. But in the mean time we are going away this weekend to visit Steve's son, Dane. We are not going to think about myeloma, doctors, blood tests, treatments or anything else to do with cancer. We are going to have a great time in Reno, eat what ever we want, go where ever we want and sleep in as late as we want! Who knows maybe there will be a nice jacuzzi at the hotel and we'll soak for a while!
Love,
Deanna
I wanted our visit to UCLA to be as informative as possible. Here was our opportunity to ask the "expert" any question we could think of. But with the muscle relaxer I've been taking my brain was in a fog and all I wanted to do was sleep.
I'll keep it short. The doctor at UCLA wants Steve to be part of a clinical trial. The clinical trial is being conducted all over the United States and he will be the third patient that UCLA will have in the trial. Apparently Steve's options are a little more limited then most. He's already had 3 other kinds of treatment and too many different treatments can preclude you from a clinical trial.
Another preclusion factor is if the patient has had any other cancer in the past 3 years. He has, but as long as the cancer was confined AND the Insurance Company authorizes the treatment then Steve can participate. If this doesn't work there are other treatment options available. The good news is that if his cancer goes into remission he can still have a SCT.
We'll find out more on Monday. But in the mean time we are going away this weekend to visit Steve's son, Dane. We are not going to think about myeloma, doctors, blood tests, treatments or anything else to do with cancer. We are going to have a great time in Reno, eat what ever we want, go where ever we want and sleep in as late as we want! Who knows maybe there will be a nice jacuzzi at the hotel and we'll soak for a while!
Love,
Deanna
Wednesday, April 7, 2010
"Things Are Moving Fast"
Steve went in this morning for the bone marrow biopsy. He had the same doctor as last time and the anaesthesiologist was wonderful. In fact Steve said all of them were wonderful. There were 5 total, just for a bone marrow biopsy! Recovery time was minimal and he felt pretty good. The first thing we did when we left the hospital was to get something to eat!
Not long after we left the hospital we got a call from the oncologists office. They said we should be hearing from UCLA and we were given a list of things we need to take with us when we go. We have to get the pathology slides from both biopsies, copies of all x-rays and scans that he has had since diagnosis and a copy of his whole chart. Luckily we live in a very modern age, all his x-rays and scans will be put on a CD. No lugging around a huge 36"X48" envelope full of x-ray film. Technology is great!
Soon after we got home I was talking to Francisco at UCLA. He did the registration over the phone and set up the appointment for next Wednesday at 1:00 pm. After I hung up the phone I looked over at Steve and told him when the appointment was. He said " Things are moving fast". "Too Fast". And he's right things are moving fast. But I reminded him why the doctor wants all of this done quickly. After 7 months of chemotherapy and no response, the doctor has to move fast. He has to do something quickly but first he needs to figure out what that will be.
I know my post may come across as very upbeat and matter of fact but I have to tell you today was a very hard day. There were a lot of tears shed by both of us. Things are looking very scary and we are both overwhelmed. In fact today was the first day since we were given the bad news that I was able to let it out. When something this big happens in life what is the first thing you want to do? I feel like running away. Not from my husband, never! But from the situation. I wish it wasn't happening. But there are just some things in life that you can't get away from. You have to go forward. You have to!
My Pastor stopped by my office this afternoon. After updating him and sharing with him my heartache, my wonderful Pastor quoted Psalm 23:4; "Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your Rod and Your staff, they comfort me". He was wise to remind me of this scripture. It's speaks of our circumstance and most importantly points me to the Lord and his promises to us.
Not long after we left the hospital we got a call from the oncologists office. They said we should be hearing from UCLA and we were given a list of things we need to take with us when we go. We have to get the pathology slides from both biopsies, copies of all x-rays and scans that he has had since diagnosis and a copy of his whole chart. Luckily we live in a very modern age, all his x-rays and scans will be put on a CD. No lugging around a huge 36"X48" envelope full of x-ray film. Technology is great!
Soon after we got home I was talking to Francisco at UCLA. He did the registration over the phone and set up the appointment for next Wednesday at 1:00 pm. After I hung up the phone I looked over at Steve and told him when the appointment was. He said " Things are moving fast". "Too Fast". And he's right things are moving fast. But I reminded him why the doctor wants all of this done quickly. After 7 months of chemotherapy and no response, the doctor has to move fast. He has to do something quickly but first he needs to figure out what that will be.
I know my post may come across as very upbeat and matter of fact but I have to tell you today was a very hard day. There were a lot of tears shed by both of us. Things are looking very scary and we are both overwhelmed. In fact today was the first day since we were given the bad news that I was able to let it out. When something this big happens in life what is the first thing you want to do? I feel like running away. Not from my husband, never! But from the situation. I wish it wasn't happening. But there are just some things in life that you can't get away from. You have to go forward. You have to!
My Pastor stopped by my office this afternoon. After updating him and sharing with him my heartache, my wonderful Pastor quoted Psalm 23:4; "Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your Rod and Your staff, they comfort me". He was wise to remind me of this scripture. It's speaks of our circumstance and most importantly points me to the Lord and his promises to us.
Monday, April 5, 2010
Doctor Update
We saw the oncologist today. He received all the tests results from the ER visit on Saturday. What we were most concerned with were the blood and urine cultures. Steve has continued to have a fever, spiking at times to 100+. There are no signs of infection at this time so the doctor feels it's either due to the clot or the Myeloma itself. Steve will continue with the antibiotics and will probably be on blood thinners indefinitely. He is going to the Coumadin Clinic tomorrow for testing. They will monitor him and determine how much coumadin (blood thinner) he should take. Once this is determined he will no longer have to take shots (Arixtra).
Now to why we really were there. The m-spike blood test revealed that the chemo not only didn't help but his number went up from 3.5 to 4.2. Not good. So the doctor wants a new bone marrow biopsy (scheduled for Wednesday morning) and is referring him to UCLA for a consultation. He wants to first find out if Steve is a candidate for a stem cell transplant (SCT)and also what course of action the other oncologist recommends. Since Steve's cancer has been so resistant to treatment he wants to get another opinion before moving on to the next "chemo cocktail". There are some chemos which can damage stem cells, and if Steve is a candidate for a SCT he needs to avoid those chemos.
Needless to say we are feeling discouraged. But we are not going to give up. If you have ever seen anyone undergo chemotherapy or suffer through a chronic illness you will understand my next statement. I have great respect for my husband. He's not giving up and is willing to endure the next test, treatment you name it. I see what he goes through and can't help but think to myself, "I could never do what he is doing". But as a wise pastor told me....."God gives us the strenght we need. You don't know today, what you will be able to do tomorrow."
Please keep us in your prayers. And if you could also pray for our friends who are fighting cancer, Margaret, Dale and Hayden.
Now to why we really were there. The m-spike blood test revealed that the chemo not only didn't help but his number went up from 3.5 to 4.2. Not good. So the doctor wants a new bone marrow biopsy (scheduled for Wednesday morning) and is referring him to UCLA for a consultation. He wants to first find out if Steve is a candidate for a stem cell transplant (SCT)and also what course of action the other oncologist recommends. Since Steve's cancer has been so resistant to treatment he wants to get another opinion before moving on to the next "chemo cocktail". There are some chemos which can damage stem cells, and if Steve is a candidate for a SCT he needs to avoid those chemos.
Needless to say we are feeling discouraged. But we are not going to give up. If you have ever seen anyone undergo chemotherapy or suffer through a chronic illness you will understand my next statement. I have great respect for my husband. He's not giving up and is willing to endure the next test, treatment you name it. I see what he goes through and can't help but think to myself, "I could never do what he is doing". But as a wise pastor told me....."God gives us the strenght we need. You don't know today, what you will be able to do tomorrow."
Please keep us in your prayers. And if you could also pray for our friends who are fighting cancer, Margaret, Dale and Hayden.
Sunday, April 4, 2010
Happy Resurrection Day
I was hoping that there wouldn't be any reason to write a new post before tomorrow (cancer update), and that the post would only be positive. Not so.
But before I get into what happened I have to first remind myself what this day is about. Today Christians all around the world are celebrating the resurrection of our Lord and Savior Jesus Christ. The Greatest Gift of all! We celebrate the "finished" work that our Great and Merciful God has done for us. And while we reflect on His great mercy we can not help but praise Him all the more.
And today I am praising him all the more. For once again his provision has taken care of Steve, and helped us to avoid something really bad. Tuesday Steve started having a low grade fever, which he told me about on Thursday. (Yes I was mad!!!) Wednesday night I noticed a slight swelling in his right lower leg. Being as thin as he is it was easy for me to see the difference between his two legs. He had no other symptoms.
There wasn't much change over the next two days. Friday he went in for his picc cleaning and told them his symptoms. They thought it could be a blood clot and scheduled an ultrasound, the earliest available appt. being on Tuesday. Jump forward to Friday night, Steve's low grade fever is now up to 100.9, he begins the antibiotics. Saturday his leg starts to hurt. Great!
Now after reading everything I have on the numerous side effects from chemotherapy and all the medications, I knew swelling and pain in the leg was most likely due to a blood clot. We called the doctor and he recommended a trip to the ER. Now mind you this was the 3rd time in a little over 3 months we had been to the ER. So we decided to eat first. We stopped at Norm's restaurant! I know, I know, not the wisest thing to do but we were hungry and we knew we would not see the light of day for hours.
When we got to the ER he was given a room right away. Dr. L. ordered some blood work, an xray of his chest and an xray and ultrasound of his leg. The leg xray was to rule out a pathological fracture. This is what Myeloma does, it causes bones to break. Fortunately that was not the case.
5 long hours later we were told Steve had a blood clot (Deep Vein Thrombosis). And we were happy to find out that we could go home. But first they had to show me how to give him a shot of Arixtra (blood thinner). I would be doing this for the next 6 days. This wasn't too bad. Having two diabetic sons I knew how to give shots. In fact Steve didn't even feel the one I gave him. (Don't ask him about the one the experienced nurse gave him).
We are thankful. Thankful for you our friends and for your prayers. I'll see you tomorrow with a new update and we are still hoping for that "positive" post"
Love Deanna
But before I get into what happened I have to first remind myself what this day is about. Today Christians all around the world are celebrating the resurrection of our Lord and Savior Jesus Christ. The Greatest Gift of all! We celebrate the "finished" work that our Great and Merciful God has done for us. And while we reflect on His great mercy we can not help but praise Him all the more.
And today I am praising him all the more. For once again his provision has taken care of Steve, and helped us to avoid something really bad. Tuesday Steve started having a low grade fever, which he told me about on Thursday. (Yes I was mad!!!) Wednesday night I noticed a slight swelling in his right lower leg. Being as thin as he is it was easy for me to see the difference between his two legs. He had no other symptoms.
There wasn't much change over the next two days. Friday he went in for his picc cleaning and told them his symptoms. They thought it could be a blood clot and scheduled an ultrasound, the earliest available appt. being on Tuesday. Jump forward to Friday night, Steve's low grade fever is now up to 100.9, he begins the antibiotics. Saturday his leg starts to hurt. Great!
Now after reading everything I have on the numerous side effects from chemotherapy and all the medications, I knew swelling and pain in the leg was most likely due to a blood clot. We called the doctor and he recommended a trip to the ER. Now mind you this was the 3rd time in a little over 3 months we had been to the ER. So we decided to eat first. We stopped at Norm's restaurant! I know, I know, not the wisest thing to do but we were hungry and we knew we would not see the light of day for hours.
When we got to the ER he was given a room right away. Dr. L. ordered some blood work, an xray of his chest and an xray and ultrasound of his leg. The leg xray was to rule out a pathological fracture. This is what Myeloma does, it causes bones to break. Fortunately that was not the case.
5 long hours later we were told Steve had a blood clot (Deep Vein Thrombosis). And we were happy to find out that we could go home. But first they had to show me how to give him a shot of Arixtra (blood thinner). I would be doing this for the next 6 days. This wasn't too bad. Having two diabetic sons I knew how to give shots. In fact Steve didn't even feel the one I gave him. (Don't ask him about the one the experienced nurse gave him).
We are thankful. Thankful for you our friends and for your prayers. I'll see you tomorrow with a new update and we are still hoping for that "positive" post"
Love Deanna
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