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Proton Therapy for Lung and Liver Mets

RoscoeDouglas's picture
RoscoeDouglas
Posts: 2
Joined: Jul 2016

 

Update- A friend of a friend contacted me last week about Proton Therapy. After looking at the information on the web and talking with me, he sent his scans to the Dr at Loma Linda, and unfortunately, he was not a candidate. A friend from Church just returned from Loma Linda where she was being treated for a Pancreatic Tumor. Another friend from church just Completed Proton Therapy for Prostate Cancer at Knoxville.

 

When you get the dreaded news that you have Cancer, cry, let your friends comfort you, and when you are feeling better emotionally, start reading about various treatment options.

 

My diagnosis was not good. I had Stage 4 Colon Cancer that had spread to the Liver, Lymph nodes, and Small lung lesions. Without treatment my life expectancy was 6 months, with Chemo, it might be 2 years. I saw doctors at Emory and Duke and received the same prognosis, and the same treatment option. The liver tumors were inoperable, and the colon tumor was large, but not an immediate threat. Chemo Therapy only was the treatment plan. I was scheduled to have a port put in at Emory and to start Chemo, when a really good friend Nick Serba called me. His advice saved my life. He insisted that I read the book Cancer Free, and not make any decisions until I had time to consider different options. I cancelled the port and Chemo, and revised my diet to the Budwig Diet. I cannot honestly tell you that the diet made any difference in the cancer, but it made me feel good. I continued to do Marathons, and I started to read. I also began to prepare to die. I had a lot of loose ends in business. I just started working on refinancing rental property, Closing my office, selling property, and leasing others. I really did not get in a hurry. I have had a belief that since I have accepted Jesus as my Savior, dying will just be a change of address. So the important decision had already been made a long time ago.

 

Every day, I read posts from people with Colon cancer and the treatment they received. I was diagnosed in March 2015. In late November 2015, I saw a post from a lady that mentioned Proton Therapy. I searched for Proton Therapy for Liver tumors, and found Dr Gary Yang at Loma Linda in California. I called the hospital and referred myself as a potential patient. Dr Yang accepted me as a patient 2 days later. With a treatment plan using Proton Therapy to treat the liver tumors, I began making plans to have surgery to remove the large colon tumor. I emailed the Dr at Emory who advised against having the Proton Therapy. He also advised against having the colon surgery. He did not think I would live long enough to warrant the risk of the colon surgery.

 

I ignored that advice, and in Dec 2015, I had the 2 Liver tumors treated with Proton Therapy. 3 weeks after the treatment, the liver tumors were no longer cancerous. I then asked a local Doctor to remove my Colon Tumor Robotically. He later said that he removed the tumor by C-section. He cut a small flap out from my belly button. That was in Jan 2016. Since then, I have returned to Loma Linda each 4 to 6 months. I have had 2 liver tumors, 2 Tumors around the aorta, and 25 Lung tumors treated. I still have small lesions in my lungs which may of may not become tumors. I return for a 6 month checkup and further treatment if needed in August 2018.

 

The proton therapy generally has no side effects. You can golf or go to the health club right after. You do not feel it, it is a ray gun that they point at the tumor. The Proton beam goes to the tumor and divides the DNA of the tumor, and the tumor dies. It does not effect good tissue.

 

I have only had Proton Therapy and the Colon Surgery. It has been almost 3 1/2 years, and I still feel good, play with the grandchildren in the pool, and live a normal life.

 

The local Doctors in Macon had never heard of Proton Therapy, even though Loma Linda treated the first Proton patient in 1990. So far they have treated 200 kinds of tumors in 20,000 patients. Dr Yang has a 90% success rate with Liver tumors.

 

There are numerous treatment options that most of us have never heard of. Local Doctors cannot make a living sending patients to other states for treatment. If you don't take the initiative and become your own advocate, you might miss out on a treatment that might not be available where you live.

 

 

 

 

 

 

 

 

 

 

 

lhduffer
Posts: 73
Joined: Oct 2015

I was very interested in the proton therapy after my diagnosis for the reasons you have mentioned but was told I was not a candidate either.  They also said that even if I could get treated my insurance would not cover it as it was not considered standard treatment for my cancer.  Hopefully, it will become more widely available to us all.

Thank you for sharing this information as it is something that could be a benefit to many.

Annabelle41415's picture
Annabelle41415
Posts: 6304
Joined: Feb 2009

I'm not one that has heard of that either and I'm surprised that it is not more widely known.  Wishing you the best.

Kim

Joan M's picture
Joan M
Posts: 395
Joined: Oct 2016

I'm going to ask my doctor to see if I can this treatment and see if my insurance would cover it.  Sounds like a much better treatment option than chemo.     

kyolcu
Posts: 112
Joined: Jun 2017

Proton therapy is interesting thanks for posting it. It looks like MD Anderson Cancer Center does not do proton therapy for colorectal cancer only for head and neck cancers. I wonder why a well-known hospital does not do for GI cancers.

jland's picture
jland
Posts: 2
Joined: Jul 2018

I like you had a large tumor that they wouldn’t remove and it had spread to my liver and lungs. After a year of chemo and radiation which is terrible for your body. The radiation made the tumor get hard and it was blocking everything so they had to remove it. A blessing in disguise. I had two surgeries this year 2018. My surgery like yours was robotic. My last ct scan in June showed I have two more nogules in my lungs. I started more chemo three weeks ago. I can’t tell you if the chemo for thirteen months did anything but maybe keep the large tumor from growing and kept the cancer from spreading any worse. The side affects I think out weigh the benefits. I was diagnosed in December 2016. I am going to look into the proton therapy. Thank you for posting this. Most of us only know what are doctors thell us. I am glad I found your post. I like you am not afraid of dieing, you can’t threaten me with Heaven. <Content Removed by CSN Support Team>

 

Joan M's picture
Joan M
Posts: 395
Joined: Oct 2016

He discussed my case with the radiologists and said I am not a candidate for proton beam therapy.  I wonder why they aren't using it for more cancers when the cancer centers have it available.  They use radiation for many cancers, and I've read reports from several on this board who have had radiation for one or more tumors.  

It's really frustrating.  I hope better treatments are found before this cancer or the chemo kills me.

BTW:  what is with the CSN staff removing content from people's posts?  

Trubrit's picture
Trubrit
Posts: 4958
Joined: Jan 2013

I was wonderfing the same thing. My guess is that the post was maybe too religious.   Tru

myAZmountain
Posts: 291
Joined: Apr 2018

Does anyone know what the criteria is for being a candidate? I would defintitly be interested for the 2 lesions I have in my lung--I hate chemo.

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