Jump to content
timbaker

STEREOTACTIC RADIATION

Recommended Posts

timbaker

HI ALL, 

I was diagnosed with advanced prostate cancer in July 2015, PSA 120 with Gleason score 9, and lesions in my right femur and left 7th rib. I've been through early chemo and ongoing hormone therapy, Zoladex, and have had a good response so far. The lesion in my femur has completely gone and I only have one small spot remaining on the rib, according to a recent PSMA PET scan. My PSA has been slowly rising though, from 3.6 to 4.5 over the past several blood tests. I've been recommended stereotactic radiation to treat the spot on the rib, with the hope of dropping my PSA and hopefully buying me a bit of a holiday from hormone therapy. I had a six month break from Zoladex last year,  which was great, and am keen to try and find a way to have intermittent breaks from it ongoing. I've been using a doctor in the US, who describes himself a a "patient advocate", to get a second opinion on things and he's been very encouraging of this direction. He talks about "the abscopal effect" and the potential for the targeted radiation to trigger an immune response and in some cases help reduce or eliminate cancer cells elsewhere in the body, that the targeted radiation somehow helps the immune system recognise cancer cells. I've read quite a bit of research on the topic and it seems credible. My treating oncologist is on board after some initial reservations, and a local radio oncologist is able to perform the three treatments, each of 30 minutes duration, over a week or so. I wonder if anyone has had any experience with this type of treatment and how it went for them? I'm 53, in good health, and have tried to take a pretty pro-active, holistic approach to my health - I follow a mainly plant-based diet, meditate twice daily, exercise daily (surf, yoga, pilates, gym) see a naturopath and take a variety of herbs and supplements - turmeric, green tea extract, vitamin D, fish oil, have used Pomi T and cannabis oil  intermittently, lots of carrot juice, broccoli, pomegranate, etc. I've also been part of a study at the University of Queensland using high intensity training as a cancer treatment. I'd like to think there is a way to manage my disease with at least intermittent breaks from hormone therapy, as I find its side effects pretty debilitating and suffer quite severe mood swings and find the loss of libido and sexual function particularly difficult and tough on my marriage. I dare to believe there may be a way to achieve a lasting remission through diligence and carefully considered diet, lifestyle, meditation, exercise, etc, though I understand many are sceptical about this. I'd welcome any feedback on this approach and wish you all well in your journeys. .  

Share this post


Link to post
Share on other sites
Admin

Tim

You will find articles on this site about the abscopal effect under the more commonly used term "oligometastatic".

http://forums.jimjimjimjim.com/search/?q=oligometastatic

 

I have had the opportunity to talk to both Declan Murphy and Chris Sweeney about their experience with this.

 

Anecdotally Declan Murphy, whose family are into Pokemon, calls his experience "Pokemet" because, no sooner has he radiated one met than a new one popped up a short time later.

 

On PubMed they published a short warning that the treatment was experimental:

https://www.ncbi.nlm.nih.gov/pubmed/28283344

(In some other cancers the treatment is sometimes quite effective. One theory for why it is not in prostate cancer is that while some cancers are homogenous (all tumors are the same) prostate cancers are hetrogenous (tumors mutate into slightly different copies of the original).

Jim

Share this post


Link to post
Share on other sites
Charles (Chuck) Maack

With the radiotracer/isotope fluciclovine (Axumin) F18 PET/CT imaging having identified the precise location of my cancer cell activity  (soft tissue in the area where anastomosis - reattachment of the urethra to the bladder neck following surgical removal of the prostate 26 years ago) at only 1cm in size, I had follow-on CT and MRI to then mesh with the F18/PET/CT imaging for precise location for targetting.  I get my second targetted radiation today, then Thursday, then again next week Tuesday and Thursday.  In my case EDGE targetting radiation system is being used.  The F18 PET/CT imaging did not identify any other cancer activity from the top of my head down to mid thigh.  So, and I see this in your case, you should probably have similar CT and MRI and they merged with your PSMA PET scan to specifically identify exact target then go ahead with the targetted radiation.  My Radiation Oncologist had originally planned three treatments but then decided five may be better.  Wishing you success and that mine will be the same.

Share this post


Link to post
Share on other sites
Cam

Hi Tim, please read “My Story” and if interested, I’d be keen to be in direct contact with you.

cam

Share this post


Link to post
Share on other sites
timbaker

Thanks for feedback and lots of good information there, particularly meshing the different types of imaging. Much appreciated. Cam, I read your story and can relate to the feeling shared. The best thing I have done for myself in terms of dealing with the emotional ups and downs is meditation. I did two five-day retreats at the Gawler Cancer Foundation in the Yarra Valley and got a lot out of it, and have established a solid daily meditation practice. I also did a 10-day Vipassana retreat nearly two years ago and am going to do another in November. It was after the last retreat that I recorded really good results and managed the six month break from Zoladex, so I like to think it has some real physical health benefits along with the mental health benefits. As I say, I know many are sceptical about the various alternative and natural approaches out there but I like to keep an open mind and there is some pretty compelling evidence on the benefits of a plant-based diet, high intensity training and meditation in particular. I've done a fair bit of reading and the best sources I've found for a sensible, evidence-based "middle path" using conventional and compimentary treatments is Anti-Cancer by David Servan Schreiber, You Can Conquer Cancer by Ian Gawler and Radical Remissions by Kelly Turner. I'm a journalist by trade so have done a bit of writing on my experience just on my own website, which appears to have recently wigged out so have tried to attach a couple of things here in case they are of interest. Happy to make contact via email - tim@bytimbaker.com - I have two kids, aged 12 and 16, and so determined to hang around as long as possible!  

what's in the way .docx

THIS IS NOT A WELLNESS BLOG.docx

Share this post


Link to post
Share on other sites
pauldhodson

Hey Tim, Sounds like you're still doing well. Take a look at this video. I think it's the right one. Dr Kwon talks about the treatment of Oligometastatic PCa and the potential for a remission. Cheers Paul. Her it is: 

 

Share this post


Link to post
Share on other sites
Colin Glover

Thanks for putting that up Paul. It is so revealing and that was in 2014. He has other more recent videos on YT. Our PC support groups need to see evidence like that to help promote hope and push for alternative approaches other than just supposedly keeping the disease at bay. 

Share this post


Link to post
Share on other sites
timbaker

Hi Paul, 

That is brilliant and so encouraging, but also a little disappointing that so many oncologists seem blind or unconvinced by this potential. I had to debate my oncologist to get a referral to a radio oncologist to pursue this line of treatment. I am trying to "manage my expectations" as they say, but am hopeful at the very least that I can get some time off hormone therapy. I would imagine this kind of aggressive multi-pronged approach, combined with lifestyle and complementary medicines could produce some great outcomes. Hope you are doing well mate. How was the holiday in Bali?

Cheers 

Tim

 

Share this post


Link to post
Share on other sites
Nev Black

The link below is what Dr Farshad Foroudi, of the Peter MacCallum Cancer Centre, said at the August monthly telephone meeting in 2013, with men of the Advanced Prostate Cancer Support Group. 

 

http://forums.jimjimjimjim.com/topic/782-dr-farshad-foroudi-talks-to-men-with-advanced-prostate-cancer-about-oligometastatic-few-metastases-treatment-minutes-phone-in-23-aug-2013/

 

Share this post


Link to post
Share on other sites
timbaker

Thanks Nev, that was a very interesting read and quite encouraging - I really believe we need to do better than the current palliative approach and give men options other than the devastating reality of hormone therapy.

Share this post


Link to post
Share on other sites
Sisira

Dear Tim,

There's much to appreciate in your post. I like when you say"I have tried to take a pretty proactive and holistic approach to my health. This is very important in managing your prostate cancer. It is not only a case of treating the cancer in an isolated situation. All the same you can't be both proactive and reactive. Plant based diet, exercise daily, yoga, meditation are all good and wise choices. About the diet I think there is no compulsion to be vegan. Simply a heart-healthy well balanced diet is good enough for a prostate cancer patient. Why I had to use the word reactive is because you have started using a whole lot of supplements. Many of these are not backed by sufficient research although you can find enough anecdotes and apparently scientific analysis and tests conducted. Its a big and very profitable market but full of trickery and delusion. For years we were thinking supplements such as green tea, lycopene etc. with high antioxidants will support in the treatment of Prostate cancer and other cancers as well. But today there's enough research which have proved that supplementing with antioxidants from outside the body definitely increase the risk of prostate cancer and its progression. Even vitamin D in higher doses. That is why any of the qualified oncologists don't recommend such things in addition to their main treatment protocols. Sometimes we tend to think that they are not interested in our "holistic" approach. What I appreciated in your holistic approach is not in this sense. It is to ensure the proper metabolic functioning of the whole body to result in a strong body immunity that will in turn support your efforts to deal with your cancer.

In your present condition, having seen the rise in your PSA, the treatment strategy namely Radiation you are contemplating may help you. Its a curative treatment but is a focal therapy. So you have to first locate the metastases and they should be accessible for target radiation. Advice given above by Charles ( Chuck ) is a very good guidance. Only systemic treatments ( whole body ) can reach metastatic  prostate cancer irrespective of the location where they are growing . Such treatments are varied and depend on your prevailing clinical condition.

I saw this video presentation by Dr.Eugene Kwon, a very skillful Urologist working for the Mayo Clinc, couple of years back. In my opinion Treatment of Oligometastatic Prostate Cancer is a myth and is only a business concept leading to very expensive scanning, surgery and radiation by their team. This is based on an unrealistic situation where a PCa patient has less than 4 metastases in a recurrence! And destroying them ! If you can clinically identify even one, obviously there should be hundreds or even more micrometastases that will show up later in the fullness of time. How do they rule out? First micrometastasis with the circulating tumour cells and then the recurrence may involve thousands in proliferation. Once again, oncologists are not turning a blind eye to this type of innovative treatments but they can't experiment with the lives of patients unless you are in an approved Trial. 

Still you have a good number of treatments in your back pocket, and if you take the proper treatment from a center of excellence, from physicians of excellence, you will definitely be able to hold the bull by its horns. 

Good luck in your treatment plans!

Sisira

 

Share this post


Link to post
Share on other sites
timbaker

Hi Sisira, thanks for the feedback and good to hear you think I'm generally on the right path. I have heard many conflicting opinions on supplements but I guess I am pretty swayed by my own first hand experience. The supplement program was recommended by a US doctor quite experienced in these things who follows the work of a Dr Keith Block - http://blockmd.com/ - and in my own case, that lesion in the rght femur cleared up while I was off hormone therapy and two years after I finished chemo and its impossible to know what made the difference but I'm prepared to work on the basis that what I;ve been doing seems to be having the desired outcome. That said, I try and achieve most of what the supplements offer dietarily - eat cooked tomatoes rather than taking lycopene supplements, drinking lots of green tea, adding turmeric and block pepper to lots of the food I prepare. 

I found that YouTube video on oligo metastatic treatment pretty compelling and have read a lot of similar studies that seem to support the approach. I'm trying to manage my expectations but if it even just buys me some time off hormone therapy I'll consider that a win, anything more would be a bonus. The Mayo Clinic sounds pretty reputable to me and I can't imagine this doctor is making up these case studies. 

Anyway, again, thanks for all the feedback and I'll let you know how I get on. 

cheers

tim

Share this post


Link to post
Share on other sites
Kezza2

Hi Tim,

I have to agree with Sisira about the radiation.  I have been through all the current medications - Lucrin, Abiraterone, enzalutimide - and still it progresses.  Just started chemo with Docetaxel.  Latest bone scans showed a large number of additional bone mets, although the CT showed no new soft tissue mets which is a good thing.  In January, I had stereotactic radiation on my 3rd rib left, but by June I had a flare up of a new met on T7 vertebrae, so I don't know how accurate the idea of stimulating the immune response is, certainly not in my case but as Sisiar says that may just be because there were already a large number of micro tumors too small to be picked up in the scans, PET or bone scans.  I can only hope the Honorable ?? Greg Hunt is true to his word and Xofigo is on the PBS by Xmas.

 

Share this post


Link to post
Share on other sites
Sisira

Hello Tim,

Appreciate, its a good and educated reply. Respectfully, I too have to say Mayo Clinic is also a center of excellence for treatment of advanced prostate cancer. My misgivings are only on the Oligo Metastatic Prostate Cancer. For me it is the same Prostate Cancer we all have! Just to tell you about me - Diagnosed in February 2015 for organ contained highly aggressive advanced Pca of GS9 being prompted by a routine check up without any symptoms. Launched an equally aggressive multi-modal treatment protocol in March of the same year namely - RP + IMRT + ADT2 ( Zoladex + Bicalutamide ) continuously for 2 years. Cancer Staging post surgery : T2c No Mx . PSA @ deiagnosis 7.9ng/ml.

PSA ever since initial treatment up to now ( checked every 3 months ) remaining stable at 0.008ng/ml. No other treatments for PCa since April 2017 as I am in stable remission but will be exercising active surveillance for the rest of my life.

During the early stage of my treatments I also started using all types of supplements and vitamins, drink green tea and like you eat cooked tomatoes etc. These things were prescribed even by the highly reputed oncologist Dr.Charles "Snuffy" Myers in his famous book I read "Beating Prostate Cancer : Hormonal Therapy & Diet" ( which has now become outdated ) in terms of modern research on PCa. So I stopped taking supplements containing Antioxidants in whatever form. Anyone who believe in them, well and good I respect and have no arguments. They should be guided by the principle - "Caveat emptor"

As a friend I also would like to propose to you only if you have not done it so far to gain some basic knowledge on cancer biology as how it applies to PCa especially to identify the different varieties of PCa cells - some hormone sensitive, some not at all dependent on hormone ( insensitive/refractory ), some expressing PSA, some PSA negative, some not even producing PSMA. At more advanced CRPC stage they become real chemical factories and have unimaginable mechanisms, growth factors and pathways for their survival. They become virtually unstoppable unless early enough you destroy all types of PCa cells using all the arsenal you have at your disposal.

Don't waste a single moment of time. Hit the enemy as hard as possible and go for a complete destruction. Lot of them are capable of hiding and smarter than most of our oncologists!

You are intelligent and enthusiastic. Should I say I like you?

Please continue to post your treatment outcomes.We can certainly learn from each other's experience.

My kind regards Tim,

Sisira

 

 

 

Share this post


Link to post
Share on other sites
Sisira

This article published by the National Cancer Institute in 2015, I am posting belowAntioxidants.docx is for my friend Tim and others who are interested in learning more about Antioxidants and how they can affect Prostate Cancer. It is not presented for a DEBATE. Certainly not!

Sisira

Share this post


Link to post
Share on other sites
pauldhodson
On ‎8‎/‎22‎/‎2018 at 10:48 AM, timbaker said:

Hi Paul, 

That is brilliant and so encouraging, but also a little disappointing that so many oncologists seem blind or unconvinced by this potential. I had to debate my oncologist to get a referral to a radio oncologist to pursue this line of treatment. I am trying to "manage my expectations" as they say, but am hopeful at the very least that I can get some time off hormone therapy. I would imagine this kind of aggressive multi-pronged approach, combined with lifestyle and complementary medicines could produce some great outcomes. Hope you are doing well mate. How was the holiday in Bali?

Cheers 

Tim

 

 

Hey Tim, Bali was great thanks, The Hard Rock Hotel, I can thoroughly endorse, if you want to while away the hours beside a huge lagoon style pool and forget your worries for a while. I am doing OK, but I have my challenges that I'm dealing with at the moment. I've had a TURP operation as the cancer had shut off my urethra and I couldn't pee. I can now pee, but my radiation oncologist wants me to get Cyberknife treatment to the prostate very soon, as they are worried it is getting close to causing a malignant fistula. Hopefully that will provide some local control and I am hoping to get Lutetium177 via a Phase2 clinical trial in Dec/January, which I hope will give me a good outcome and buy me some time. I'm overdue for some good news! Cheers Paul.

Share this post


Link to post
Share on other sites
timbaker
2 hours ago, Sisira said:

This article published by the National Cancer Institute in 2015, I am posting belowAntioxidants.docx is for my friend Tim and others who are interested in learning more about Antioxidants and how they can affect Prostate Cancer. It is not presented for a DEBATE. Certainly not!

Sisira

Thanks Sisira, much appreciated - I'm not attached to any particular position, just keen to learn. Cheers. 

Share this post


Link to post
Share on other sites
PeterA

Implicit in the post by Person 21 was that he had experienced two types of PET scan, one re soft tissue and one re bones. Is this correct? I have had PET scans and the result identified 'hot spots' in the ribs and lymph gland.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×