Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

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

Postby Maia » Sat Aug 12, 2017 6:34 pm

Roscoe, I of course wish you wouldn't be going through all this but... what a great 'team' you have formed with Dr Yang. I love that you found this out of the box strategy. Keep going!! I'd dare to suggest you might want to explore immunotherapy, in trials or off label, if you can --might be the 'something' that this very precise radiation is missing to give you hopefully durable responses.
Best to you.

justin case
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Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

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

Postby justin case » Mon Aug 14, 2017 5:14 pm

Roscoe Douglas wrote: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.

I spent the last 5 years of survival putting affairs in order. I'm with you on that one brother, death is just a change of address, although I hate moving with a passion ! I'm not stage four, although your metaphor will live with me for the rest of what Jesus leads me to ?
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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chrissyrice
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Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

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

Postby chrissyrice » Mon Aug 14, 2017 8:55 pm

What would be the process I should do in order to be referred from Emory in Atlanta to MD Anderson for proton therapy?

Emory Winship will not have their new machine in operation until late 2018.

I have been dx with another recurrence to my para aortic verge involves 50% of the iliac artery again.
Also mri shows that I have concerning brain lesions.

Emory is not wanting to operate as in 2015...they can only offer Xeloda and radiation therapy 5 days a week for 25 to 30 treatments.

I am not comfortable with the plan and I know that proton therapy would be a much better outcome.

My QOL has been good and I am MSS and Wild Type KRAS, NRAS,and BRAF too.

I am able to travel and your post has given me back hope...otherwise I am game over.

Thanks,
Chrissy
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

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mypinkheaven
Posts: 455
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Facebook Username: Sally Cunningham
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Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

Postby mypinkheaven » Tue Aug 15, 2017 1:28 pm

chrissyrice wrote:What would be the process I should do in order to be referred from Emory in Atlanta to MD Anderson for proton therapy?

Emory Winship will not have their new machine in operation until late 2018.

I have been dx with another recurrence to my para aortic verge involves 50% of the iliac artery again.
Also mri shows that I have concerning brain lesions.

Emory is not wanting to operate as in 2015...they can only offer Xeloda and radiation therapy 5 days a week for 25 to 30 treatments.

I am not comfortable with the plan and I know that proton therapy would be a much better outcome.

My QOL has been good and I am MSS and Wild Type KRAS, NRAS,and BRAF too.

I am able to travel and your post has given me back hope...otherwise I am game over.

Thanks,
Chrissy


Chrissy, Get your records from Emory - CT scan discs included, MRI images. Then call MD Anderson:
https://www.mdanderson.org/patients-fam ... enter.html

Is Emory offering SBRT (more precise, but not as precise as proton or IMRT which does more surrounding damage to healthy tissue?
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

Roscoe Douglas
Posts: 8
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 » Sun Aug 20, 2017 12:12 pm

Roscoe Douglas,


Update: I was diagnosed with Stage 4 colon cancer at age 67. The treatment offered was Chemotherapy only. The Liver mets were supposed to kill me in 6 months without chemo. I refused Chemo and started on the Budwig diet, a restrictive diet that involves eating a mixture of flax seed oil and cottage daily.
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. I found Dr Yang at Loma Linda on the internet, and he accepted me as a patient.

Dec 2015 I received 3 days of treatment on each tumor. A PET scan 3 weeks later showed the liver tumors were no longer cancerous and almost gone.
In Jan 2016, my colon tumor was removed robotically by Dr Conforti in Macon Ga,
In Feb 2016, a tumor around the aorta was treated by Dr Yang with Proton therapy.
From August 15th until Sept 28th 2016. One aorta tumor and 6 lung tumors were treated with Proton.
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. He thought all 20 would grow at the same time and kill me.
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 Feb 19th, 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. The other 15 had not grown.
On Aug 1st 2017, I Returned to Loma Linda and Dr Yang treated 9 more lung tumors with Proton therapy. He grouped the tumors into groups of 5, 2 and 2. The treatment was about 5 minutes per day for 3 days on each group.

I have at least 2 more lung tumors that he will treat in Feb 2018, and it 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.

I would encourage anyone who is diagnosed with cancer to not rush into treatment immediately. Take time to consider all the treatment options. Doctors will usually only recommend treatment that is available locally. In the case of Metastatic cancer, that is usually Chemo Therapy. There may be other options, and in some cases, where there are other factors, an option could be to do nothing. I found Proton Therapy by continuing to research options after just changing my diet for 8 months. As of now, I have no side effects, and have a normal energy level. Does that mean that I have beat the cancer? No, but I have had a good quality of life for 2 1/2 years when I was supposed to have died in 6 months.

Remember, you did not get cancer yesterday. You may have found out yesterday that you have cancer, but it is not new. It will probably not kill you tomorrow unless you worry yourself to death. Calm down, pray for peace and you decide what treatment you want.

You can read more about Dr Yang and Loma Linda at
http://www.protons.com

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Maggie Nell
Posts: 791
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

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

Postby Maggie Nell » Thu Jan 25, 2018 11:03 pm

bump
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

Sara!!!!
Posts: 51
Joined: Wed Jul 19, 2017 9:57 am

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

Postby Sara!!!! » Fri Jan 26, 2018 11:41 am

Roscoe Douglas wrote:Roscoe Douglas,
roscoe@firstbenefits.com

Update: I was diagnosed with Stage 4 colon cancer at age 67. The treatment offered was Chemotherapy only. The Liver mets were supposed to kill me in 6 months without chemo. I refused Chemo and started on the Budwig diet, a restrictive diet that involves eating a mixture of flax seed oil and cottage daily.
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. I found Dr Yang at Loma Linda on the internet, and he accepted me as a patient.

Dec 2015 I received 3 days of treatment on each tumor. A PET scan 3 weeks later showed the liver tumors were no longer cancerous and almost gone.
In Jan 2016, my colon tumor was removed robotically by Dr Conforti in Macon Ga,
In Feb 2016, a tumor around the aorta was treated by Dr Yang with Proton therapy.
From August 15th until Sept 28th 2016. One aorta tumor and 6 lung tumors were treated with Proton.
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. He thought all 20 would grow at the same time and kill me.
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 Feb 19th, 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. The other 15 had not grown.
On Aug 1st 2017, I Returned to Loma Linda and Dr Yang treated 9 more lung tumors with Proton therapy. He grouped the tumors into groups of 5, 2 and 2. The treatment was about 5 minutes per day for 3 days on each group.

I have at least 2 more lung tumors that he will treat in Feb 2018, and it 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.

I would encourage anyone who is diagnosed with cancer to not rush into treatment immediately. Take time to consider all the treatment options. Doctors will usually only recommend treatment that is available locally. In the case of Metastatic cancer, that is usually Chemo Therapy. There may be other options, and in some cases, where there are other factors, an option could be to do nothing. I found Proton Therapy by continuing to research options after just changing my diet for 8 months. As of now, I have no side effects, and have a normal energy level. Does that mean that I have beat the cancer? No, but I have had a good quality of life for 2 1/2 years when I was supposed to have died in 6 months.

Remember, you did not get cancer yesterday. You may have found out yesterday that you have cancer, but it is not new. It will probably not kill you tomorrow unless you worry yourself to death. Calm down, pray for peace and you decide what treatment you want.

You can read more about Dr Yang and Loma Linda at
http://www.protons.com

Is proton therapy done for peritoneal spread? :( we are in a v hopeless situation cuz of the small bowel obstruction. Doctors arnt giving us hope. What should we do :(
Daughter to mom 67, colon cancer
Diagnosed Dec 16, bowel obstruction.
Hemicolectimy done,Dec 16.
4 lesions in liver on scan before chemo jan 17.
Folfox +Avastin 12 cycles,disease progression on pet Aug 17.
Attempted liver resection, failed. Mets peritoneam. Diffuse.
Mets to lungs, liver. Peri on scan Nov 17.
3 cycles of folfiri+ cetuximab. Cea down from 888 to 383.
Small bowel obstruction jan 18

AllieG33
Posts: 2
Joined: Fri Apr 06, 2018 8:02 am

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

Postby AllieG33 » Fri Apr 06, 2018 9:10 am

Thank you for posting on this topic. My Drs @ Penn recently suggested proton therapy to help with 1 liver met that is starting to become resistant to my current chemo, 5FU+Avastin, which is very tolerable for me. My understanding is that the proton therapy will ‘buy me’ a matter of either weeks or months in terms of delaying the start of the next line of chemo, FOLFIRI, which I’ve had before and has a much bigger impact on QOL for me. Proton therapy itself is 4 weeks of daily low-dose radiation. It has potential serious side effects, such as duodenum/stomach/intestinal ulcers, bleeding or perforation, but less than 5% chance of these side effects, and possibly even less chance because of the low dose and long duration as opposed to higher dose over short duration.
I have 3 kids aged 14,12 and 10, and the past 5 years since I was diagnosed have been all about buying time. So I’m leaning towards trying the proton therapy, especially since some people on this thread have done so well on it. And I’m lucky enough to live only 45 mins away from Penn so that I have this option available.
Reading this thread has been very helpful, thanks to all.
Dx 4/2013 @ age 40 Stage 4 Rectal cancer T3 N2 M1 (liver)
MS high (unstable) KRAS
6/2013-8/2013 FOLFOX
10/2013 APR surgery, removed single met
2/2014-4/2014 IMRT for lymph node recurrence
5-7/2015 2 lung & liver mets
8/2015-12/2015 IV high dose vitamin C
12/2015 CT - growth
2/2015-6/2015 5FU
11/2015 CT - mets in peritoneum
11/2015-6/2016 FOLFIRIR
8/2016-current 5FU+Avastin
4/2018 - 5 years, still kicking!

skb
Posts: 31
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Fri Apr 06, 2018 3:50 pm

When I visited the Mayo Clinic in Rochester, Minnesota last year, they offered proton beam therapy. It was advertised as less harmful to surrounding tissues.

Just letting people know of another medical facility that offers it.
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from tumor location: no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left
8/11/17: starts wait and watch at Univ of Minn.
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
1/28/18 colonoscopy - no tumor
4/4/18 MRI -- no tumor still
6/13/18 Sigmoidoscopy- no tumor still

Ehut
Posts: 184
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

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

Postby Ehut » Fri Apr 06, 2018 4:48 pm

skb wrote:When I visited the Mayo Clinic in Rochester, Minnesota last year, they offered proton beam therapy. It was advertised as less harmful to surrounding tissues.

Just letting people know of another medical facility that offers it.


I just wonder if they would be willing to treat metastatic tumors in the liver or other locations or only primary tumors. I suspect the latter, but it would be interesting to know for sure.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 6+ years and counting!

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mypinkheaven
Posts: 455
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

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

Postby mypinkheaven » Fri Apr 06, 2018 7:00 pm

Ehut wrote:I just wonder if they would be willing to treat metastatic tumors in the liver or other locations or only primary tumors. I suspect the latter, but it would be interesting to know for sure.

AllieG33 and Roscoe were both talking about getting metastatic tumors treated with proton radiation therapy.
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

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mypinkheaven
Posts: 455
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

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

Postby mypinkheaven » Fri Apr 06, 2018 7:03 pm

AllieG33 wrote: My understanding is that the proton therapy will ‘buy me’ a matter of either weeks or months in terms of delaying the start of the next line of chemo, FOLFIRI


I'm wondering why the docs would consider the proton therapy as "buying time". Do they not feel that the proton radiation would kill the liver nodule? Merely shrink it? Or do they think more mets could appear?
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

Ehut
Posts: 184
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

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

Postby Ehut » Sat Apr 07, 2018 12:13 pm

mypinkheaven wrote:AllieG33 and Roscoe were both talking about getting metastatic tumors treated with proton radiation therapy.


I was talking specifically about Mayo clinic since that is where I got my treatment.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 6+ years and counting!

AllieG33
Posts: 2
Joined: Fri Apr 06, 2018 8:02 am

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

Postby AllieG33 » Sun Apr 08, 2018 10:37 am

Mine is a metastatic liver tumor, 1 of 3. I also have 2 lung mets and some mets in the abdominal cavity. The 1 tumor that they are going to treat is 3.7cm, increased from 3.1cm on a recent scan, while all other mets are smaller than 1cm and are not growing on chemo. The idea is to control the growth of this one met so that I can continue on my current chemo instead of “ramping up” to FOLFIRI. The doctors did seem to think that they can stop tumor growth permanently in this one spot, but it is not a cure since there are other mets around.
I read that proton therapy didn’t cause too many side effects for at least one person on this thread. Anyone else have any experience with this? How were the side effects?
Also, my Dr told me that some radiation oncologists won’t do this for metastatic colorectal tumors, but others will be glad to do it. Just depends on the dr.
Dx 4/2013 @ age 40 Stage 4 Rectal cancer T3 N2 M1 (liver)
MS high (unstable) KRAS
6/2013-8/2013 FOLFOX
10/2013 APR surgery, removed single met
2/2014-4/2014 IMRT for lymph node recurrence
5-7/2015 2 lung & liver mets
8/2015-12/2015 IV high dose vitamin C
12/2015 CT - growth
2/2015-6/2015 5FU
11/2015 CT - mets in peritoneum
11/2015-6/2016 FOLFIRIR
8/2016-current 5FU+Avastin
4/2018 - 5 years, still kicking!

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mypinkheaven
Posts: 455
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

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

Postby mypinkheaven » Fri Apr 13, 2018 11:19 am

AllieG33 wrote:I read that proton therapy didn’t cause too many side effects for at least one person on this thread. Anyone else have any experience with this? How were the side effects?


I've read some Facebook posts from people who have received proton radiation and their side effects were minimal to none. Best wishes to get rid of the met and stay stable. Sally 8)
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping


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