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Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Sun Apr 03, 2016 8:33 am
by Roscoe Douglas
At age 68, I was diagnosed with stage 4 terminal Colon cancer with metastasis to the liver and lymph nodes in March 2015. I have no other medical problems. I was offered chemo, to try and reduce the size of the tumors. I talked with my son in law who is a doctor, and he confirmed that chemo might give me another 9 months. The average life expectancy with chemo was 2 years. I decided not to do the Chemo. According to the oncologist at Emory, I should have had 6 months to live with no treatment. I changed my diet to the Budwig diet in March 2015, and continued life as usual doing marathons each month.

in November 2015, while researching colon cancer on the internet I found a treatment at Loma Linda University Hospital in California called Proton Therapy. I applied and was accepted for treatment. I had treatment for 2 liver tumors, both too close to veins to be surgically removed. I had been told that the liver tumors would kill me, so it was not practical to remove the colon tumor unless it threatened to block the colon, or was bleeding. Three weeks after the proton therapy, the liver tumors were gone, and a pet scan confirmed that the liver was no longer cancerous.

In Jan 2016, I had surgery to remove the colon tumor. Dr Arnold Conforti did a right colectomy robotically and delivered a 9cm colon tumor by c-section.

In Feb 2016, after the successful colon surgery, I had Proton Therapy on a Porta Aortic Lymph node that was enlarged. It was too close to the aorta to be removed surgically. I originally had two lymph nodes that were enlarged, but the other one was normal when I had the CT scan prior to the treatment.

I do not know what the future holds, I am only into this 1 year. I am part of a study at Loma Linda where Dr Gary Yang is developing a proton treatment for liver metastasis. I will go to Loma Linda every 3 months for scans to check for additional tumors. I am told that Metastatic cancer almost always comes back. As far as I know, Dr Yang is the only Dr who treats metastatic liver tumors with proton therapy.

During my treatment, I toured the Proton Center and learned that they have been successfully treating many different types of cancer since 1990. The first patient in 1990 had an ocular tumor. Her options were proton therapy or have the eye removed. The treatment worked and the eye was saved. Today, one of the treatment rooms is dedicated to the treatment of ocular tumors. Many of the patients are children.

About 70% of the proton patients have prostate cancer. This treatment kills the cancer without surgery and allows the patient to live a normal life. While at Loma Linda, I met patients with a variety of cancers. Some of the proton treatments were in conjunction with chemo and surgery, others, like mine were just proton.

The proton treatment is pain free and with little or no side effects. My treatment was Medicare approved and Loma Linda accepts Medicare. I realize that this is not a cure all, but in my case, it was the difference in life and death. My email is roscoe@firstbenefits.com

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Sun Apr 03, 2016 1:34 pm
by H is for Hawk
There is another medical treatment facility advertising "the world's first compact pencil beam proton therapy for colorectal cancer". It mentions less toxicity to the tissue surrounding the tumor as compared to conventional radiation treatments. The machine is the ProteusONE model. It is at the Willis-Knighton Proton Therapy Center in Shreveport, Louisiana. Looks like a legitimate treatment as most insurance plans are accepted and is Medicare approved. The website is wkproton.com

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Sun Apr 03, 2016 2:12 pm
by lpas
Such wonderful news! Thanks so much for sharing this information.

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Sun Apr 03, 2016 7:44 pm
by KElizabeth
Very interesting. Thanks for sharing, I may have to look into this someday.

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Sun Apr 03, 2016 8:05 pm
by vilca11
Thank you, Roscoe, for letting us know about your proton experience and your path on this journey. I so loved your story - not a standard one for sure. I planned to go to Germany for the proton therapy when my liver mets were discovered, but my Hopkins team persuaded me to do SBRT instead and that was a huge mistake.

Germany has been doing it for years, here in the US we have been doing it too - at MDA, Loma Lima, Penn and few other centers. But they all have old equipment.... Maryland is building facility next to Univ of MD for the Proton Center too, should be ready next year or around. I hope that Louisiana center really has the world class beam, because all the other centers do not and that is why US proton treatment is significantly less effective than German. If they and Maryland get the machines that Germans use, proton treatment of liver mets will be a real game changer...

Anyhoo, just wanted to support the proton therapy idea on liver. Hope some of our patients will take this option, preferably at a new equipment center. It is very effective in prolonging life and even cure at times. Hugs, Vilca

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Tue Apr 05, 2016 9:04 am
by Roscoe Douglas
This is the website for Loma Linda
http://protons.com/why-choose-loma-linda/our-center

Loma Linda was the first Proton Center, and is constantly being upgraded. It was constructed at a cost of 250 million dollars with funding from Nasa, the federal government and private donations. A team of 100 scientists and doctors came together at their own expense at Loma Linda to design the facility. It has been in operation since 1990. Tumors that were thought to be untreatable are treated routinely at Loma Linda. My Doctors at Emory, and Duke never mentioned this treatment. I found it on the Internet. I referred myself. I have found that Doctors do not refer you to treatments not available at their facilities.
This is the contact at Loma Linda
Peggy Hiersche
909-558-8213

Re: proton therapy and colon cancer for the right candidate

Posted: Sun Jul 31, 2016 4:25 pm
by Roscoe Douglas
Update- I was watching a Football Life about Kenny Stabler last night and at the end I found out that last Feb, one month before my diagnosis, he was diagnosed with Stage 4 Colon Cancer, the same as me. After a little research, I found that he was on Chemo when he died 5 months later in July 2015 at age 69.

I return to Loma Linda in 2 weeks to get a PET Scan and treatment if necessary. My prayer is that there are no tumors, and treatment is not necessary. If I had followed the doctors orders, and just had Chemo, I could also be dead That became real last night.

If you don't know my story, I was given 2 years to live if I started Chemo, and 6 months to live if I did not start Chemo. Chemo , I was told would not cure me, it would only help me live longer. That was March 2015. I chose to not start Chemo. I changed my diet to the Budwig diet, and Decenber of 2015, I had Proton Therapy at Loma Linda on my inoperable Live tumors. 3 weeks later, the tumors were gone. In Jan 2016, I had my fist size colon tumor removed robotically in Macon. In Feb 2016, I had an inoperable Lymph node tumor around my aorta treated with Proton Therapy. In April 2016, a PET scan at Loma Linda showed that I had no tumors. I did have 2 small places on a lung that they are watching to see if tumors develop.

Even if it is short lived, at least for the past few months, I have lived without cancer, or the knowledge of having cancer.

I ordered information kits about Proton Therapy and gave them to my Doctors. Most of them were not aware of the treatment, even though Loma Linda treated their first patient in 1990. If you have friends or relatives that have been told that they have cancer, I would urge you to let them know about Loma Linda.

When the doctor insists that you start Chemo immediately, do the research for yourself, and make your own decision. There are always options. The best option might be to Pray and ask God what you should do. He might tell you to just be calm, and think.

Gwen tells me that when I die, all the medals from Marathons, the treasures from a lifetime of travel, the pictures of times past, the insurance plaques, all my stuff will all be discarded or sold at a garage sale.

At least for now, I can sit in my office and those items remind me that God has been with me and protected me all my life. And yes, Life Is Good and there is a Tomorrow. There are Grand Children to be born and adopted, a Marriage to attend, trips to take, Adventures to experience, places to go and people to meet. Yes, Life is Good, Thank you Jesus.

Roscoe Douglas
roscoe@firstbenefits.com
478-714-5703

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Sat Sep 03, 2016 9:56 am
by KElizabeth
Roscoe,
How many trips to Loma Linda did you have to make for your initial ptoton therapy on the liver? I am interested in the treatment but would like to know how to plan. I am not sure if I would need to take short term disability and move closer. Did insurance help with the cost?

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Sat Sep 03, 2016 10:23 am
by rp1954
I don't recall anyone that has showed billed proton costs yet. This could be very helpful for starting point in preparations and planning.

I recall a classmate whose son was treated successfully at Loma Linda for brain tumors some years ago. In a newspaper interview he remarked, this before MD Anderson got their proton center, how MDA doctors had pooh-poohed proton therapy.

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Sat Sep 03, 2016 3:02 pm
by H is for Hawk
My nearest proton therapy center, Univerisity of Pennsylvania, (Penn Medicine) refused to treat my metastatic liver tumors.

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Sat Sep 03, 2016 3:12 pm
by JDMNYC
H is for Hawk wrote:My nearest proton therapy center, Univerisity of Pennsylvania, (Penn Medicine) refused to treat my metastatic liver tumors.


Curious - what was the rationale?

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Sun Sep 04, 2016 1:09 am
by H is for Hawk
The Penn Proton Center only treats lung, prostate, and spinal cord tumors. I think it was an insurance issue, insurance companies are selective on what tumors they will cover, as proton treatment is more expensive than standard radiation. There is some controversy on whether patients have better outcomes with Proton therapy.

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Sun Sep 04, 2016 9:46 am
by JDMNYC
H is for Hawk wrote:The Penn Proton Center only treats lung, prostate, and spinal cord tumors. I think it was an insurance issue, insurance companies are selective on what tumors they will cover, as proton treatment is more expensive than standard radiation. There is some controversy on whether patients have better outcomes with Proton therapy.


Thanks Hawk - Interesting to know. My sister in law has been sending me stuff on proton therapy, and I've really just started looking into it. Remarkable how much treatment issues are driven by insurance.

Jim

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Mon Oct 03, 2016 4:10 pm
by erinnatacha
Roscoe- Thank you for your posting. I have a lymph node by my aorta that the docs are recommending to remove via surgery, but I am very nervous due to the risk. I asked about proton therapy and they said it wasn't an option due to the location...so, I think I will be checking with Loma Linda to see what they say. I did chemo and it shrunk the tumor, but did not get it all :(

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Posted: Mon Oct 03, 2016 8:00 pm
by mypinkheaven
JDMNYC wrote: My sister in law has been sending me stuff on proton therapy, and I've really just started looking into it.
Jim


Hey Jim,

Have you found any info on proton therapy for multiple lung mets? Scripps in San Diego does provide proton therapy.

Sally