Update.. and Hernia :(

So, we met with the oncologist today at Cancer Treatment Centers of America. Since the treatment is working, they would like to continue his current treatment. We are trying to figure out if we can do some treatments here and some in Salt Lake at Huntsman. If we leave Huntsman, then Curtis will have to be taken off the trial drug, and it may be working. But, we like the nutritional support they offer here. His iron and Vitamin D levels are low, so they started him on supplements for that as well as fish oil. Statistics show that 40% of cancer patients actually die from malnutrition rather than cancer itself. But we are not sure yet if he can have treatment here every other treatment and still participate in the trial..

Also, we were changing Curtis' ileostomy bag this morning and noticed a bulge behind his ostomy. We had a ostomy nurse look at it today and it is a hernia which will eventually require surgery. How soon he will need surgery, we don't know. He will have to stop his chemo for 6 weeks and 4 weeks after the surgery.. We will have a consult with a surgeon when we get back to Salt Lake about the hernia..

On a good note, we found out that the lesions on his liver are essentially undetectable now :)

Phoenix and PET scan

So we arrived to Phoenix Sunday. It is warm and sunny everyday! I love it! The Center here is nice too. We got the results of the PET scan that was done yesterday and it showed "overall improvement." His tumors are shrinking and he is responding to treatment!! We are super excited! We saw the gastroenterologist today and we see the oncologist tomorrow. We are trying to decide if we should do his treatment here Friday and try and get back to Salt Lake in time for treatment Friday at Huntsman. We don't know if they will recommend any change in treatment here until our appt tomorrow. Curtis has had a good week. He even went to the pool with me yesterday and enjoyed some sunshine. I will update tomorrow after our appt (as long as the wireless at the hotel cooperates).. I think they may be running off dial up or something :) super slow.. It's a good day :)

Happy Birthday Mom!!

We wanted to wish my mom a Happy Birthday today! My parents have been incredible during this journey with us! We love you guys!

Phoenix

Tomorrow is the big day... We are going to Phoenix's Cancer Treatment Center of America to see if there are any other options that are not available at Huntsman. We will be there 3-4 days depending on what options they have for us. I will keep the blog updated during the visit. Wish us luck!!

PS We celebrated our 2 year Anniversary on Monday. Curtis made me an amazing collage on the back of a quilt I have been wanting. It was absolutely perfect!!

Infusion Again.. Possibly pain pump?

Curtis is having another infusion today. He actually did quite well with the last one. He had a nerve block a little over a week ago, with little relief. The next option is a pain pump which we are considering. Curtis was doing some research on some alternate treatments and found cryotherapy where they freeze the cancer cells. This lead to more research and we found a facility in Phoenix that does a lot of alternative treatments for specifically stage 4 cancer patients. We will be flying down to Phoenix to see what they can do for him in the next few weeks. If we do decide on treatment there, we will need somewhere to stay during the treatments. If anyone has family/friends in the Phoenix area that would be willing to let us stay for a few days let me know :)  Here is some info on the pain pump. I will post info about the other options if we find out that they are infact options in Curtis' case.

What Is a Drug Pump?

Drug pumps (intrathecal drug delivery systems) delivery pain medication to the fluid around the spinal cord, called the intrathecal space. Because the drug pump releases medication directly to the pain receptors in the spine, pain relief can be achieved with a small fraction of the oral medication dose.^1-6

  SynchroMed II Drug Pump

About the Drug Delivery System

The system consists of a pump and catheter, both of which are surgically placed under the skin. The pump is a round device that stores and delivers pain medication. It is placed in your abdomen. The catheter (a thin, flexible tube) is inserted into your spine and connected to the pump.

During the surgery, your doctor fills the pump with pain medication using a needle. The pump sends the medication through the catheter to the spinal area where pain receptors are located. You return to your doctor for more medicine when the pump needs to be refilled.

How It Works

The spinal cord is like a highway for pain signals that are heading to the brain. When the pump sends pain medication directly to the spine, it interrupts the pain signals before they reach the brain.

Medtronic Products

Drug delivery therapy from Medtronic may help manage your cancer pain so you are more comfortable and able to perform your usual daily activities, although it may not be possible to eliminate your pain completely.

The Medtronic SynchroMed^® drug delivery system consists of:

• A battery-operated pump surgically placed under the skin of the abdomen
• A soft tube called a catheter, surgically placed under the skin, that carries the medication from the pump to the intrathecal space of the spine
• A handheld programmer your clinician uses to adjust the medication dosage to treat your pain
• A handheld patient control device called myPTM^® that allows you to give yourself an extra dose of medication (within physician-set parameters) in response to intermittent pain (ask your clinician if this device is appropriate for your condition and if it is covered by your insurance)

It is important to note that the system can be surgically removed if you decide to discontinue the therapy.

Treatment Update

Curtis has been doing fairly well with chemo treatments. He has had 2 cycles so far. Side effects: mouth sores, numbness in hands, nausea, vomiting, and fatigue. He had a very painful and swollen toe on his right foot last week. I took him in to have it looked at and they think it might be gout. He started the medications for gout and he was better soon after starting. (Gout is a side effect of chemo) It is still sore, but he is able to walk on it now. His biggest problem now is his frequent trips to the bathroom. We are hoping the nerve block with help that..  His dad is in town from Ohio to visit and they have spent a lot of time trying to get his transmission for his Jeep put back together with his help.. He has his good days and bad days, let's hope for more good :) Here is a picture of Curtis with our beautiful new niece Zoie Bailey.

Curtis goes in for a nerve block tomorrow at 1pm. Originally we were going to do a temporary one, but have decided to do a permanent one (lasts 3-6 months). The nerve block is scheduled for 3pm. Here is info on how the nerve block works:

A nerve block relieves pain by interrupting how pain signals are sent to your brain. It is done by injecting a substance, such as alcohol or phenol, into or around a nerve or into the spine.

Nerve blocks are used to treat chronic pain when drugs or other treatments do not control pain or cause bad side effects. A test block is usually performed with local anesthetic. If you achieve good pain relief from the local anesthetic, your doctor may inject a nerve block, such as alcohol or phenol.

Nerve blocks numb the nerves touched by the drugs. This relieves pain by interrupting the pain signal sent by the nerves to your brain. Depending on the type of nerve block, your pain may be numbed for a short time or a long time.

Nerve blocks for chronic pain may work for 6 to 12 months. They may have to be repeated.

Nerve blocks are used to diagnose the causes of pain. They also are used to treat chronic pain when drugs or other treatments cause bad side effects or do not control pain.

Nerve blocks often relieve pain. They work well in pain control for people who have advanced cancer and painful nerve conditions.¹

Nerve blocks work especially well for some types of cancer pain, such as pain from cancer in organs such as the pancreas.

Nerve blocks can cause serious complications, including paralysis and damage to the arteries that supply blood to the spinal cord. Other possible side effects include severely low blood pressure (hypotension), accidental injection of the alcohol or phenol into an artery, puncture of the lung, damage to the kidneys, diarrhea, and weakness in the legs.