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.

Surgery Update Dec 9 2004

We just got back from the hospital not long ago.  What was supposed to be a morning surgery ended up starting at about 3:00 p.m.  She got into recovery at about 5:30 and into her room a little before 7:00.  The doctor reported that it went well again.  He searched the lung for any other problems he might find and came up empty.  That is good.  He also reported that they did a test on a small portion of the tumor and the test showed it is dead tissue.  The full test will be done by next week but at this point it appears the chemo had some effect. That would be excellent if the tumor is completely dead.  That doesn't guarantee the rest would be, but it would be a good positive sign.  Her room number is 3124.  The phone is 387-3124.  She is pretty groggy tonight but I'm sure starting tomorrow she would enjoy calls or visits.  Thanks for all you do and for your prayers.  We love you all.

The Second Thoracotomy Dec 8, 2004

I just wanted to let everyone know what I am scheduled to do.

I will have surgery on my left lung on Thursday Dec. 9th.  It sound like it will

be a mid morning surgery.  I will call the hospital at 9 :15 am and see when the surgery before me will be finished.

 

After healing from this surgery I will have another surgery on my right lung.  This

will be after Christmas and around the first of the year.

 

We plan of finishing this off with a few more rounds of Chemo.

 

I will be taking at least 3 months off of work. 

We are grateful for all of your thoughts and prayers.

Thanks for all that you are doing and have done for our family.

 

Shane will keep you posted on how we are doing.

Hysterectomy November 17, 2003

Each year I followed up with the doctor.  The fibroid had not grown but did start causing increased discomfort.

In October 2003 I made arrangements to have it and my uterus removed. 

November 17 I had a hysterectomy.  The fibroid had grown 5 cm.to 8 cm.  Everything looked normal.  The surgery was a success..  We left my ovaries and cervix intact.  I stayed in the hospital for several days then was released to spend time at home recuperating.

At this time I was working as a trainer for Convergys.  Shane was in the process of looking for a job.