Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

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Roscoe Douglas
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Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Postby Roscoe Douglas » Sun Apr 03, 2016 8:33 am

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

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H is for Hawk
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Location: eastern Pennsylvania

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

Postby H is for Hawk » Sun Apr 03, 2016 1:34 pm

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
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
6/15 HIPEC
9/15 Pleural lining & liver mets, CA 19-9: 6000
10/15 Vectibix Tafinlar Mekinist
11/15 1500
1/16 200
2/16 100, add Lentinan
3/16 122
6/16 4500
7/16 20,000, CT scan - three new liver mets
8/16 6700, FOLFIRI
9/16 4900, CT scan - two new liver mets
10/16 2255 vinorelbine

lpas
Posts: 991
Joined: Wed Nov 19, 2014 11:11 pm

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

Postby lpas » Sun Apr 03, 2016 2:12 pm

Such wonderful news! Thanks so much for sharing this information.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX, Celebrex & many supplements
3/16 Ovarian mass removed. Benign fibroid
9/16 clean colonoscopy
3/17 clean CT
Ongoing Celebrex, cimetidine & other carefully-targeted supplements
Post-chemo CEA 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6, 1.3
Mom to a 3 & 6yo

KElizabeth
Posts: 388
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Facebook Username: KElizabeth
Location: Omaha

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

Postby KElizabeth » Sun Apr 03, 2016 7:44 pm

Very interesting. Thanks for sharing, I may have to look into this someday.
Female age 38- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 -current
CEA at recurrence:10.1/august, 2015
CEA: 1.9 February, 2016
CEA: 16.4 March 2017
CEA: 90.1 October 2017

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vilca11
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Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

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

Postby vilca11 » Sun Apr 03, 2016 8:05 pm

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
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

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

Postby Roscoe Douglas » Tue Apr 05, 2016 9:04 am

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

Roscoe Douglas
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Re: proton therapy and colon cancer for the right candidate

Postby Roscoe Douglas » Sun Jul 31, 2016 4:25 pm

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

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

Postby KElizabeth » Sat Sep 03, 2016 9:56 am

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?
Female age 38- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 -current
CEA at recurrence:10.1/august, 2015
CEA: 1.9 February, 2016
CEA: 16.4 March 2017
CEA: 90.1 October 2017

rp1954
Posts: 1202
Joined: Mon Jun 13, 2011 1:13 am

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

Postby rp1954 » Sat Sep 03, 2016 10:23 am

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.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

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H is for Hawk
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Location: eastern Pennsylvania

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

Postby H is for Hawk » Sat Sep 03, 2016 3:02 pm

My nearest proton therapy center, Univerisity of Pennsylvania, (Penn Medicine) refused to treat my metastatic liver tumors.
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
6/15 HIPEC
9/15 Pleural lining & liver mets, CA 19-9: 6000
10/15 Vectibix Tafinlar Mekinist
11/15 1500
1/16 200
2/16 100, add Lentinan
3/16 122
6/16 4500
7/16 20,000, CT scan - three new liver mets
8/16 6700, FOLFIRI
9/16 4900, CT scan - two new liver mets
10/16 2255 vinorelbine

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

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

Postby JDMNYC » Sat Sep 03, 2016 3:12 pm

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?
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

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H is for Hawk
Posts: 103
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Location: eastern Pennsylvania

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

Postby H is for Hawk » Sun Sep 04, 2016 1:09 am

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.
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
6/15 HIPEC
9/15 Pleural lining & liver mets, CA 19-9: 6000
10/15 Vectibix Tafinlar Mekinist
11/15 1500
1/16 200
2/16 100, add Lentinan
3/16 122
6/16 4500
7/16 20,000, CT scan - three new liver mets
8/16 6700, FOLFIRI
9/16 4900, CT scan - two new liver mets
10/16 2255 vinorelbine

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

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

Postby JDMNYC » Sun Sep 04, 2016 9:46 am

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
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

erinnatacha
Posts: 1
Joined: Tue Sep 20, 2016 2:22 pm

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

Postby erinnatacha » Mon Oct 03, 2016 4:10 pm

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 :(

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

Postby mypinkheaven » Mon Oct 03, 2016 8:00 pm

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
MSS, KRAS Wild
9/2012 Colon Cancer IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Metastasis to uterus. Hysterectomy
2/16 Pelvic radiation - 25, brachytherapy - 3.
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules less than 5 mm.
8/16 CT Nodules still present. Most stable. Some growth
10/16 CT Same ^. Onc recommends no tx :evil:
11/16 Transfer to UCSD Moores Cancer Center
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus


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