Raging Myeloma

This post has been a couple months in the planning. We are still here and kicking... just not as high.
In my last post we were elated to the fact that the essential oils we were using seemed to be working. Stevan's M-spike was non-existent. He felt good and was doing. However since then, there have been some major issues that have arisen.

Stevan had some problems with his collar bone at the end of Sept. He felt like maybe he had broke one when he was rolling a cedar log out of a bucket on a tractor. After several weeks, he finally went to a doctor and got an X-ray to show that it was broken... then he started complaining about his other collar bone. Back to the doctor. Yep it was broken too. The doctor suggested we get an appointment with Dr Selby, Oncologist, even though we had just had labs and X-rays done two months before that showed everything was great!

BAM! The M-spike was back to a 3.1 on Oct 16, when Stevan went to see Dr Selby. By this time Stevan was having some other serious symptoms, incontinence, pain wrapping around from his back to his groin area, and swelling in the groin area. Dr Selby immediately sent Stevan to be admitted to OU Medical Center for an full body X-ray and MRI of his spine to see what was going on, and later performed a CT scan. They found a mass pressing on his vertebra in his lower back pressing small bone shards into the spinal cord. They immediately began radiation, starting with the old block kind and then changed to a new kind of radiation that is pencil lead thin to only target the problem areas and protect the spinal cord. He spent two weeks in the hospital and then came home Oct 30th with the   understanding he would have an appt to follow up and continue radiation on his right hip in Paris, Tx, which the oncology team at OU was also concerned about. They were afraid it was going to break.

Stevan finally got into Paris Oncology and began radiation on his sternum Nov 10th. When he was at OU in Oct they told us there was a quarter size hole in his sternum but was now the size of a softball and was now causing a lot of pain and the doctor in Paris wanted Stevan to be more comfortable. Nov 17, the labs showed that his hemoglobin was at a 6.7 and he would be getting 3 units of blood the next day. On Nov 20th, his hemoglobin was up to 8.9, not good but better (the range should be 14-18). They also said that they would stay on top of it and watch it.

Stevan and I spent the week of Thanksgiving up in the hills hunting. The first of the week we had the kids. Wednesday, Stevan's sister Cherl and her other half, Will came up from Mississippi and stayed till Friday with us. Then one of our friends son, Kyle, came up on Friday and spent the night with us.
Overall, not productive in hunting but relaxing and enjoyed the time out side with God's creation.

After Kyle left on Saturday, we decided to load a few things up and take home that afternoon. We should have done this before Kyle left. Stevan asked me to load up one of the 4-wheelers on the small trailer. Long story short, I had problems loading it and it ended up flipping over on top of me, landing me in the ER that evening with a severely jammed left pinky and a broken right pinky. I'm thankful it was me and not Stevan that was on the 4-wheeler. I was able to get out of the way faster than he would have been able to. I was lucky that is all that happened.

Sunday, Stevan's brother, Bill came up and helped us load the rest of the camping stuff. What would have taken all day, only took about two hours with his help.

Thursday, Dec 4, we came to OKC for Stevan's follow up appointments with Dr Herman, Radiologist, and Dr Selby, Oncologist. When he arrived at Herman's office, the nurse noticed that Stevan had blood coming from a his nose. They called Selby's office and they ordered labs which they were able to determine his hemoglobin was at a 5.9, dangerously low. Selby's office ordered us to go to the ER at OU Medical and have them give him another blood transfusion. When we got to the ER, we got in the fastest we ever have, 3 minutes, we didn't even sit down. Within an hour, they had us a room upstairs.

They gave Stevan 4 units of plasma to help his blood to clot. They then began to give him 3 units of red blood over night. He was having sever pain in different areas of his body, so they began to try and see what was going on by scheduling MRIs for those areas. After him spending several days in OKC he was released with nothing really resolved.

The one thing that was discussed was the fact that radiation was not working. It was simply hitting a couple of spots at a time and managing pain. I spoke with one doctor that came to evaluate Stevan and she agreed that the radiation was not working, that his treatment had to be changed.

I will post more when we have more information...

Getting Oily

So what have we been doing that has made a difference in our life over the past several months. Essential Oils... What are Essential Oils? In short essential oils are aromatic volatile oils that come from plants or plant parts ~ roots, resin, leaves, flowers, shrubs, seeds & more that contain the healing properties of the plants. They are in lipid form and penetrate readily into our cells effecting their benefits on us. Some ways of using essential oils include inhalation, topical application or as dietary supplements. The oils with their light molecular weight are easily absorbed by our skin in topical applications and enter readily into our circulatory system. Sometimes their effects are almost immediate.

So why have some of you not heard of essential oils? Well essential oils have been around for thousands of years. But drug companies cannot make money off of them since they are are from nature and cannot be patented. Therefore, essential oils will not be put into pharmaceuticals because drug companies won't pay to study them. So that is why you probably haven't heard a doctor recommend them.

So why essential oils? There are many reasons but to name a few, essential oils are natural, gentle to our cells, targets multi issues in the body, the more you use the more your life can improve, was created by God, and frequency. What is frequency? It is a measurable rate of electrical energy that is constant between any two points. Every living thing has an electrical frequency. A healthy body typically has a frequency ranging from 62 to 78 MHz, while disease begins at 58 MHz. Here is some examples, Fresh produce - 15 MHz, dry herbs - 12 to 22 MHz, fresh herbs - 2 to 27 MHz, and Essential oils start at 52 MHz and can go as high as 580 MHz!

So why did we decide to use essential?  Back in January a dear friend of mine kept posting about essential oils and they began to catch my eye and interest. I began to read and research oils and their effects on the body. I was amazed at the testimonies of others who had used essential oils. After two weeks of reading and researching and sharing what I was learning with Stevan, he said that we should order the kit and get started in using essential oils in our home. After using Young Living Essential Oils in our home for many months, we began to believe that God had given us these oils as an answer to prayers.

When Stevan went to see Dr Selby in April, we talked about the use of essential oils. We asked him if he was familiar with Dr H.K. Lin research with Sacred Frankincense at OU Medical Center a few years back and he was. We discussed with him about using essential oils along with his chemo.  Dr Selby agreed with letting us begin to use oils on Stevan. He said that it would not affect the outcome of the medicines that he was being prescribed or the chemo.

At Stevan's June appointment we discussed with Dr Selby the possibility of taking Stevan off of his chemo pills, Revlimid for a few months to give him a break. Stevan was tired of taking so many pill and how they made him feel. The chemo pills, Revlimid, was making his neuropathy worse. It made him tired and shaky and he was sick and tired of being sick and tired. We again talked to Dr Selby about Stevan using Frankincense during this time while he was off of his chemo. Dr Selby agreed that this would be a good time to use some alternative medicines if that is what we wanted to. After much reading and research on cancer and on Multiple Myeloma, has led us to our oil protocol for Stevan.

How have we been using essential oils?
The first month we used Young Living's K&B, a liquid supplement containing herbal extracts traditionally used to support kidney and bladder health and is enhanced with pure clove, Roman chamomile, and other essential oils. Its a little bitter so instead of having Stevan take it by the dropper, I put it in two 00 size vegetable capsules for him to take in the mornings. This was to help cleans out his kidneys and bladder after taking the chemo for so long. Young Living's Sulfurzyme was also given two capsules twice a day. Sulferzyme offers the powerful effects of MSM, which is a natural form of dietary sulfur known to support normal metabolic functions, circulation and aid in the body's natural defense system. It also supports the immune system, the liver, circulation and proper intestinal function and works to scavenge free radicals. Young Living's NingXia Red is a powerful antioxidant drink that contains whole Ningxia wolfberry puree specially formulated to energize, fortify and replenish the body and mind. It supplies the body with vital antioxidants and phytonutrients that provide a natural energy supply. Stevan takes one ounce drink each morning.  Frankincense has known properties that help reprogram defected cancer cells. Stevan took 10 drops in a vegetable capsule daily. Lemon is an excellent source of d-limonene and has also had a history of boosting the body's natural defenses. He took 20 drops in a capsule daily.

Both have cancer healing properties but Sacred Frank is much stronger.

Second month we continued the Lemon essential oil, Sulfurzyme, and NingXia Red but switch from Frankincense to Sacred Frankincense, which comes from the Boswellia sacra frankincense tree, which has been researched by Dr H.K. Lin at OU Medical Center and found that it does in fact kill cancer cells at amazing speed. It has been tested for its ability to turn off the DNA of cancer cells and return the DNA to a healthy state. Dr H.K. Lin has not researched Multiple Myeloma but his research in bladder and breast cancer has been remarkable. Here is a few links to some clinical studies done on cancer research using Sacred Frankincense.
http://www.ncbi.nlm.nih.gov/pubmed/19296830
http://www.oapublishinglondon.com/article/656
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3258268/
https://www.aromaticscience.com/β-caryophyllene-oxide.../

This third month we are continuing everything we were doing in the second month. After talking to the doctor we believe this is what has helped push back Stevan's protein level without the use of chemo. Even though his kappa and lambda light chain ratio has gone up we believe this is still better than what effects the chemo has had on Stevan's body. His energy is better than it used to be. He only takes napes once, maybe twice a week. Revlimid has taken a toll on his body, breaking down his muscle mass. He was looking into the mirror last week and realized that his left shoulder (the arm that broke and has a rod in it) is smaller than his right. Of course he has protected and babied this arm since he he was diagnosed. It doesn't help that he's right handed either, so he doesn't work at strengthening the left arm/shoulder. Since he has been having pain and discomfort in his left arm and shoulder, I have been applying essential oils to it as well, but I will leave that discussion for the next post since this is getting a bit long.

I must end by saying that I am not a doctor and cannot legally diagnose, cure or treat. I am writing what we have done and has worked for us. Also I only use Young Living Essential Oils for their purity and Seed to Seal process. If you have questions about what I have posted please feel free to ask.  This post was not intended to sell Young Living but educate others in what I have found. However, if you are interested in purchasing a Young Living Everyday Oil Kit and become a wholesale member to acquire essential oils at a discount you can sign up here https://www.youngliving.com/signup/?sponsorid=1644383&enrollerid=1644383  There are several options to begin using Young Living but I can testify that the Premium Starter Kit is the best deal and wont disappoint.

Thank you for your continued prayers. God has continued to bless us over the last several months. He is good!

Its Back With Avengence!

This morning Dr Jackson from the Eye Institute came to evaluate Stevan's eyes again. No change. He did say that the mass appeared to be about the size of two large grapes or a ping pong ball.

Dr Selby came in a bit later and talked to us. They were still waiting on the 24hr urine sample, bone biopsy and the official read on the MRI scan on his brain and discussed treatment options. He said their first option is to go for chemo treatment, either with IV or with pills along with the Dexamethasone. Second option is radiation, and finally surgery. He did say that by looking at the MRI it appears that the myeloma is in the first layer of membrane surrounding the brain (there are three layers that surrounds and protects the brain). He wasn't sure just to what extent it was in it.

At 1:30pm today we were transported over to the cancer clinic for a consult with the radiology team. We met up with Stevan's former radiation doctor, Dr Herman. He said the MRI from yesterday showed that there are several myeloma lesions in his back, and right arm socket and the mass behind his left eye has eroded a bit of the bone inside the socket. There is also myeloma lesions on several places on his scull. He said there was myeloma in the lining of the brain close to the fluid that surrounds the brain. Translation: this is serious!

He said they wanted to do a spinal tap and check his spinal fluids to see if the myeloma was in it. They also want to do a different kind of MRI on his back and spine to see the lesions better. This will happen tomorrow.

Treatment according to Dr Herman: full cranium radiation today, 15 to 25 treatments. This will cause fatigue, redness to the eyes, and more than likely permanent hair loss. Down the road, 3-5 yrs., he will develop cataracts and will have to have them removed. Dr Herman said they will work with Dr Selby and watch what they are doing with drug treatment so that they don't overdo the radiation and possibly stop it if the chemo is working.

When we got back to the room, the resident stem cell doctor came in and told us that the MRI was finally read.  He said where they thought the myeloma had invaded the lining around the brain was actually just the reflection of the bone. So they are not going to be doing the spinal tap after all. We told him that Dr Herman had began the radiation this afternoon and was interested in a new MRI on Stevan's spine and right shoulder to see if there needed to be more radiation done in those areas as well. He said that he would contact Dr Herman's office in the morning and discuss everything with him. He also said that they would have to wait until the bone biopsy comes back before they start Stevan on any chemo. They want to see the makeup of the myeloma to determine which chemo to use on it.

This evening we discovered that the doctors have stopped the Dexamethasone. We didn't realize it, but we plan on asking the doctors in the morning about it. We wonder if they stopped it because it didn't seem to be reducing the swelling.

Thank you for the prayers. God had given me more strength today than I could have ever had myself to deal with all that we heard today.

The Transplant Process

I want to spend the next week. Going over a few things that we are about to do. Today I wanted to talk about the transplant process. I hope that this will answer a lot of questions for everyone, who is wondering what is going on.
Stevan will be going through a autologous transplant. This is where he is his own donor. He donated his own stem cells back on April 17 and 18th. It was then frozen and stored.
He will be going through a peripheral stem cell transplantation. This is where he will have a high-dose chemotherapy and then transplantation. Its called "high-dose" because the doses he will receive are from 5 to 10 times higher than the doses given during traditional chemotherapy. Such a high dose destroys cancer cells but also healthy cells too, which divide and reproduce rapidly, such as the cells that line the mouth, stomach, intestines and the bone marrow.

The blood is made up of red and white cells and platelets. The red cells carry oxygen from your lungs throughout the body to all your organs and return carbon dioxide to the lungs to be exhaled. White blood cells prevent and fight infections and platelets help the blood to clot. Stem cells develop into red cell, white cells or platelets.  They are concentrated in your bone marrow in bones like your hips, sternum and skull, but can also be found in the blood that circulates within your body (peripheral blood). Stem cells are the only adult cells that make more than one kind of cell type.

So after this "high-dose" of chemotherapy that will destroy his stem cells, his body will have less ability to carry oxygen, and will be at a higher risk of infections and bleeding problems. This will start on May 21, after he has his CVC put in.

CVC is short for Central Venous Catheter, or central line. We are not sure what kind he will get. The common types are Hickman and Quinton. This will be used to administer chemotherapy, medications, IV fluids, blood producs, IV feedings, draw blood and stem cell transplant. I will explain more about this on May 21 when he gets it put in.

Tomorrow I want to share with you how we are planning for the transplant. I must say the best layed plans dont always go as planned. Until tomorrow...