Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

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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 » Mon Oct 03, 2016 8:03 pm

Hey Sally -

No, actually, I haven't really chased it much beyond that initial stuff that I had read. Looks like it might be an option though - are you thinking of it too?

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."

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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 8:17 pm

JDMNYC wrote:Hey Sally -

No, actually, I haven't really chased it much beyond that initial stuff that I had read. Looks like it might be an option though - are you thinking of it too?

Jim


I am now! Moores Cancer Center is closely affiliated with Scripps and uses the proton facilities. And I'd be covered. I'll look into it more and see what I can find.

Sally 8)
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

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 » Mon Oct 03, 2016 9:34 pm

Ahhhh - good to know.

There's going to be so much you will be able to teach your first three oncologists (and me) :D

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."

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

Postby mypinkheaven » Tue Oct 04, 2016 12:46 pm

JDMNYC wrote:Ahhhh - good to know.

There's going to be so much you will be able to teach your first three oncologists (and me) :D

Jim


Ha! I give up on the first 3 oncologists. They gave up on me. You know how that feels. . . . . . :evil:
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

KElizabeth
Posts: 381
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Facebook Username: KElizabeth
Location: Omaha

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

Postby KElizabeth » Tue Oct 04, 2016 4:56 pm

I contacted Loma Linda on their liver mets trial and they sent me a request for records form. They don't have an application which seems weird. They said they would review my records and scans and schedule an assessment appointment I'd I look like a good candidate. I asked about time frame, and they said they usually schedule treatment within 2 weeks of your assessment visit, but you need to be off chemo for two weeks prior to treatment. Treatment is given 3 times over three to 5 days. You are expected to start Chemo again within 2 weeks of treatment. Follow up visits are every three months. I asked about cost, but they said we would see if insurance would cover the cost if I am an acceptable candidate.

The trial treatment will target up to three liver mets no greater than 5cm in the largest dimension. I didn't see anything to suggest that they would exclude a patient that had more than 3 liver mets or mets elsewhere, just that they will only treat 3.
I have more than 3 but would still like to consider this treatment. My oncologist is not convinced.

Just some thoughts. .
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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mypinkheaven
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Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Postby mypinkheaven » Tue Oct 04, 2016 8:05 pm

KElizabeth wrote: My oncologist is not convinced.


Not convinced the proton therapy would work on the 3 mets?
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

KElizabeth
Posts: 381
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Facebook Username: KElizabeth
Location: Omaha

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

Postby KElizabeth » Wed Oct 05, 2016 3:18 am

mypinkheaven wrote:
KElizabeth wrote: My oncologist is not convinced.


Not convinced the proton therapy would work on the 3 mets?

My Oncologist is not convinced that proton therapy is worth the trip to Loma Linda. He said, "it's just another way to zap the cancer, but more expensive. "

I'm concerned that other methods with do more tissue damage and affect my quality of life. I just keep getting shut down on any conversation with my oncologist about other treatment besides chemo. He says we'll wait until we know it's not working.
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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mypinkheaven
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Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Postby mypinkheaven » Wed Oct 05, 2016 11:51 am

KElizabeth wrote: I just keep getting shut down on any conversation with my oncologist about other treatment besides chemo. He says we'll wait until we know it's not working.


Wow. My current oncologist is the same. I get a big fat NO to every single question about other treatments. "In my opinion" - but never explaining why he has this opinion. I'm tired of it - I'm switching to UCSD's cancer center.

I don't understand why any oncologist would be against any treatment that would get rid of at least some mets. Ego? That's his problem. "Expensive"? It's not his money. And it's not his QOL.

If you and Loma Linda think this is doable, do it.

Best wishes!! 8)
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

KElizabeth
Posts: 381
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

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

Postby KElizabeth » Sat Oct 29, 2016 4:14 pm

Loma Linda got back to me after records review and said they think I could be a candidate for proton therapy through the trial. We have to work through the insurance phase now but I have my fingers crossed. I'm hoping to have a consultation soon!
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

dudette
Posts: 106
Joined: Sat Oct 17, 2015 10:04 am

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

Postby dudette » Sun Oct 30, 2016 1:47 am

Thanks for sharing your experience with Proton therapy, RoscoeDouglas.

I am in Germany but it's not covered by any insurance - just yet. However, I read about a precedent where an insurer was ordered to pay the treatment costs.

they think I could be a candidate for proton therapy

I keep my fingers crossed that you'll be able to get the treatment.

t/
Temi
Dx 03/2015 @ age 41 - CC stage IV - pT3 N2b (14/29) cM1 (hep) L1 V1 Pn1 R1
Wild K-RAS, N-RAS, BRAF / MSS
unresectable mets liver 60% + lungs
Surgery
04/15 - sigmoid resect.
07/16 - hysterectomy (ovaries)
Chemo
05-06/15 - 4 x Folfirinox
12/15 - 02/16 4 x Xeliri + Avastin
03-05/16 9 x Xeloda
09-12/16 Folfiri + Cetuximab
01/2017 - metronomic chemo + methadone
July 20, 2107 - Temi has passed away.

Roscoe Douglas
Posts: 6
Joined: Sun Apr 03, 2016 8:17 am
Facebook Username: Roscoe J Douglas

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

Postby Roscoe Douglas » Fri Mar 31, 2017 8:56 pm

Update; I returned to Loma Linda in Nov 2016 and a CAT scan revealed 20 lung tumors, and Dr Yang told me that I probably had 6 months to live, and in a month, I would start experiencing symptoms. In Feb 2017, I still had no symptoms, and I walked a marathon at Poppy age 69 + Lola age 1 = 70th birthday party. Lola is my adopted granddaughter, who was born on my birthday. I returned to Loma Linda in March, and Dr Yang found that I had 4 tumors that were large enough to treat with proton therapy. I started treatment on March 20th, and I am halfway through. After the treatment, I will have 6 months to life. I have considered a clinical trial, and found that the drugs being tested were chemo. So in a way, I am back to where I found myself in March 2015. Once again, I am electing not to do chemo, but, I will stick to a vegetarian diet, and take a host of vitamins. Only Jesus knows when it is my time.

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

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Maia
Posts: 2436
Joined: Fri Aug 24, 2012 8:00 am

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

Postby Maia » Sat Apr 01, 2017 8:46 am

Roscoe, sorry about the recurrence but glad that you're feeling well and that proton therapy also is helping you a bit with the lungs mets.

Why do you say that you have only chemo? There are *plenty* Immunotherapy trials for MSS colon cancer (assuming you are not MSI-high, in which case you might get immunotherapy even outside a trial). Please, use this link (the same in my signature), with a curated clinical trials list, mainly immunotherapy, that our fellow DK (Tom Marsilje, who is a stage IV patient and a scientist) curates.

https://www.appsheet.com/start/80e729e7 ... c32d26c9f4

KElizabeth
Posts: 381
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

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

Postby KElizabeth » Sat Apr 01, 2017 11:02 am

Roscoe Douglas wrote:Update; I returned to Loma Linda in Nov 2016 and a CAT scan revealed 20 lung tumors, and Dr Yang told me that I probably had 6 months to live, and in a month, I would start experiencing symptoms. In Feb 2017, I still had no symptoms, and I walked a marathon at Poppy age 69 + Lola age 1 = 70th birthday party. Lola is my adopted granddaughter, who was born on my birthday. I returned to Loma Linda in March, and Dr Yang found that I had 4 tumors that were large enough to treat with proton therapy. I started treatment on March 20th, and I am halfway through. After the treatment, I will have 6 months to life. I have considered a clinical trial, and found that the drugs being tested were chemo. So in a way, I am back to where I found myself in March 2015. Once again, I am electing not to do chemo, but, I will stick to a vegetarian diet, and take a host of vitamins. Only Jesus knows when it is my time.

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


There is a cool trial in NY and KS where they inject live mouse cancer beads into your tumors to stir a response somehow. It had very good phase one results and very few side effects if any. It's called RENCA macrobead and can be searched on clinicaltrials.gov by that name. It's not chemo so maybe you'll consider this?
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

mhf1986
Posts: 50
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

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

Postby mhf1986 » Sun Apr 02, 2017 6:34 pm

The Maryland Proton Therapy Center is open in downtown Baltimore. We have not been given this (or any other option but chemo) by Hopkins so will be discussing on our own after CT scan in May. You can look at their website and request a consultation without a referral. A friend of mine in PA (who is over 5 years from her stage 3 diagnosis) recommended we check into it.
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastin added 12/16
2/17: 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: CEA 15, OX discontinued due to neuropathy, Vit D added
10/17: CEA 26, CT scan scheduled for 10/30

Roscoe Douglas
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Facebook Username: Roscoe J Douglas

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

Postby Roscoe Douglas » Sat Aug 12, 2017 12:24 pm

Roscoe Douglas,
roscoe@firstbenefits.com

I was diagnosed with Stage 4 colon cancer at age 67. The treatment offered was Chemo only. The Liver mets were supposed to kill me in 6 months without chemo. I refused Chemo and started on the Budwig diet.

When I first learned about proton therapy in Nov 2015, I called most of the Proton centers on the east coast, and they would not treat liver metastasis. Dr Yang at Loma Linda accepted me as a patient, and in Dec 2015 after 3 days of treatment on each tumor, the liver tumors were gone.

My colon tumor was removed robotically by Dr Conforti in Jan 2016 in Macon Ga,

In Feb 2016, a tumor around the aorta was treated with Proton therapy.

Proton treatment on 7 tumors began on August 15th and continued until Sept 28th 2016. One aorta tumor and 6 lung tumors.

In Nov 2016 Dr Yang found 20 more lung tumors and told me that I should get my affairs in order, that he felt that I had less than 6 months to live. He scheduled a follow up visit for Mar 2017 if I was able to fly.

I felt fine, and on Feb 18 2017, I had a Poppy 69 + Lola 1 = 70 birthday party. Lola is my youngest granddaughter who was born on my birthday Feb19th, 2016. I organized a walk run, and completed my 140th marathon that day.

Feb and March 2017, I returned to Loma Linda and Dr Yang treated 5 more lung tumors.

Returned to Loma Linda Aug 1st, and Dr Yang is treating 9 more lung tumors with Proton therapy. He grouped the tumors into groups of 5, 2 and 2. He is doing treatments for 10 minutes per day for 3 days on each group. I have at least 2 more lung tumors that he will treat in Feb 2018, may be more if others have grown by then.

I continue to do the Budwig diet, and take several vitamins and drink Pomegranate juice each day.

I believe that friends and family praying for me has been a big factor in my survival so far. I lot of people have asked me how I can have a positive attitude with terminal cancer. The answer is that I am not afraid to die. I know Jesus, and as a Christian, death is just a Change Of Address.


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