A letter Shane wrote to Family and Friends October 10 2009

With some hesitation I am writing again with an update.  Theresa is uncomfortable with people fussing over her, but we also decided that the support from our loved ones is most important.  Most of you will know that Theresa recently finished a newly developed radiation treatment on a tumor that she had in one of her lungs.  It was the tumor that they were unable to get with the radio frequency ablation that she had been doing. 
     About a week ago we went in to have some scans done and to verify the tumor is dying.  During those scans, four more tumors were detected.  Two in each lung.  The radiation and ablation doctors are hesitant to treat that many tumors at one time.  We talked to the sarcoma specialist at Huntsman.  They have a recipe of three chemotherapy drugs that they have used in conjunction with each other.  Our hope was to never need to do chemo again, but it appears like that is our option right now. 
     Theresa asked about insurance coverage for this new treatment.  They said there has been no problem for the most part.  Just one or two insurances have denied this treatment they are developing.  It just happens that the insurance we have has been the insurance that denies regularly.  They are hopeful at Huntsman. They think with Theresa's history and what she has done to this point, they will be able to deal with the insurance and get the treatment approved.
     We will be fasting and praying that the insurance approval will come through and that the treatment will be effective when Theresa receives it.  Over the years we have felt your support.   Be assured that your support is truly appreciated.
     Thank you again, all of you.  We love you very much.       Shane

Another RFA Procedure June 29, 2009

This is Shane, I am at the Huntsman center right now. Theresa recently returned to her room from the surgery recovery area. I realize this is probably a surprise to many of you. It has been very difficult for her to tell many people of the new tumors that we found at the last scan. She would rather be concerned about someone else than have people fretting and worried over her.

The radio frequency ablation was a mild success. There were two tumors. One of them was directly behind a rib and try as he might he was not able to get the needle into the tumor sufficiently to perform the ablation. They deflated the lung and overinflated the lung to see if they could get it away from the rib. They also changed her position but to no avail. The other tumor was ablated but with some bleeding, so she has a chest tube in tonight. They still think she will be able to get the tube out tomorrow and go home tomorrow afternoon.
There is a new procedure they are developing that involves very finely focused beams of radiation. Because it is so focused right at the tumor, they are able to do much stronger doses and in just a couple maybe three treatments they will be able to kill the tumor without all the regular residual side effects of regular radiation. It sounds very similar to the radio frequency ablation but where they don't need to be able to place a needle it may be a possible option.
We do very much appreciate all your faith and prayers. That is what sustains us. We will keep you all posted concerning our progress. We love you all.

It's a Miracle August 8, 2008

I  wanted to let you know that I am home and doing well from the RFA procedure.

I was able to come home Wednesday evening.  I have been able to rest better than at the hospital.

My breathing has improved since being home and I am waiting for the energy level to come back.

I am so grateful for the Doctors and nurses that took care of me. 

I am very humbled by the results of my scans. At the end of May I had two tumors that had not changed from the February scans.

I was scanned before the procedure was to begin. 

Dr. Carlisle looked at the scan then came in and asked me if I had been on chemo since I had seen him. I had not.

He left the room then came back.  He explained that the large tumor was not there, only some thickening of the lung lining.

The smaller tumor had shrunk.  He verified with me that I wanted to ablate the small tumor.  Yes!

I laid there wondering what had happened.  I wracked my brain to find an explanation, there is none.  It is a miracle

In my years of chemo, i have had small shrinkage to tumors but not complete destruction of one.

I know it is because of faith and prayers that this has happened.  It may also be the blessing of having a missionary.

I thank each of you for your faith and prayers in my behalf.  I will be forever grateful.

I did get to talk to Derek on the phone this week.  His branch president told him to call so he would know all is well.  He is doing well.  He seems patient with the fact that he has not left for Peru, but he is anxious to get there.  He did say that there were missionaries that came three weeks ago and they flew out on Wednesday.  I hope we will be able to look back on this and know the reasons for his delay.  I know it has helped him to be able to hear in my voice that I am doing well.

I continue to pray that he will leave for Peru soon.

May we all be blessed in the things that we do.

Side effects of Sorafenib March 1 2007

This week my blood pressure is 140 over 77

Here is an update on the side effect of the Sorafenib trial.

I started the drug on 2/14/2007 400 mg twice daily.

The next day I notice a bad taste in my mouth that I could not get rid of. My tongue became sensitive. Eventually my gum became sensitive and tender with some minor bleeding.

Around the fourth day my scalp became tender to touch and had a burning sensation. I have noticed unusual bumps on my head. After a week my hair has been falling out more that usual.

One week on the drug my hands and feet began to hurt. It is now difficult to wear my shoes and i have some limitation of what I can do with my hands. I cannot open jars or lids. Any task that include small details are difficult for me to do.

Ten day after the start of the drug I developed a drug rash. This started on my arms, it has now spread all over my body. The rash is hot and at times itchy. I am using Benadryl.

I have had a low grade fever less than 100 degrees.

Letter to Dr. about side effects of Sorafinib Feb 26, 2007

Dr Horvath,

I am on the Sorafenib 400 mg twice daily for Leiomysosarcoma. I have been on the drug since 2/14/2007. The first week I was able to tolerate.

Beginning on Saturday 2/24 I developed a rash. I covers most of my body.I have included pictures of my arm. This rash is hot and somewhat itchy. I have attached pictures so that you can see the extent of this.

Could you advise me on what to do with this.

RESPONSE
Hi!
Looks like a typical drug rash. If you are not too itchy, we can proceed on for now. If you are very uncomfortable with itching or pain, then we have to hold the drug. Let me know how your symptoms are now and later. I will send this on to Candace also.
Take care!

Clinical Trial Jan 23, 2007

We had an appointment yesterday at Huntsman with the oncologist.  We discussed what has worked in the past and what has changed since that time.

The Chemo that was used last time is still the preferred chemo.  This was successful in reducing the tumors.  So that would be an option.

 

There is a clinical trial going on for a pill that is a target drug.  This drug would target the tumor and block or cut off the supply that allows it to grow.  This would be a study to see if it works in our case.  This is not like chemo and does not have the bad side affects of chemo. The drug is Sorafenib.  This is a website that describes the drug. http://www.chemocare.com/bio/sorafenib.asp

 

We are hoping to hear from the person that sets up the trial today.  We hope that trial is still going and that we qualify.

 

This would be an answer to prayers,  It would not make me as sick as chemo, and it will allow for me to go and be with our girls when they have their babies next month.  Angieogenisis is something that I have studied and I take OTC herbs and vitamins to reduce the growth of tumors. We continue to pray for the cancer to be removed.

 

Thank you all for your continued concern, love, support and prayers.  You are all so appreciated.

After Third Thoracotomy January 6 2005

I am feeling well enough to get to the computer and write a short note.

I came home from the hospital on Monday the 3rd.  It is taking just a bit longer to get back on my feet this time.  I am giving myself plenty of time though.

My parents came to help out on Tuesday.  They have done a good job of keeping me on the couch and resting.  It is good to have them here.

I am so grateful for the success of these operations.  When I am feel better I will schedule for a few more rounds of Chemo that will wipe out anything that may be left in my body.  I know that I can do this, thinking of it as an insurance that we are going to get it all. 

I appreciate your notes, telephone calls, and continued prayers.

I can't wait till to feel good enough to see you all again.