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

Posted: Sat Aug 12, 2017 6:34 pm
by Maia
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.

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

Posted: Mon Aug 14, 2017 5:14 pm
by justin case
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

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

Posted: Mon Aug 14, 2017 8:55 pm
by chrissyrice
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

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

Posted: Tue Aug 15, 2017 1:28 pm
by mypinkheaven
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?

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

Posted: Sun Aug 20, 2017 12:12 pm
by Roscoe Douglas
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

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

Posted: Thu Jan 25, 2018 11:03 pm
by Maggie Nell
bump

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

Posted: Fri Jan 26, 2018 11:41 am
by Sara!!!!
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 :(

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

Posted: Fri Apr 06, 2018 9:10 am
by AllieG33
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.

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

Posted: Fri Apr 06, 2018 3:50 pm
by skb
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.

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

Posted: Fri Apr 06, 2018 4:48 pm
by Ehut
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.

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

Posted: Fri Apr 06, 2018 7:00 pm
by mypinkheaven
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.

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

Posted: Fri Apr 06, 2018 7:03 pm
by mypinkheaven
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?

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

Posted: Sat Apr 07, 2018 12:13 pm
by Ehut
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.

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

Posted: Sun Apr 08, 2018 10:37 am
by AllieG33
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.

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

Posted: Fri Apr 13, 2018 11:19 am
by mypinkheaven
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)