Metastatic program at UF Shands

Portal Forums Lung/Thoracic Cancer Stereotactic Radiation Metastatic program at UF Shands

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This topic contains 6 replies, has 5 voices, and was last updated by  roosty 4 years, 8 months ago.

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March 20, 2013 at 3:30 am  #1254941    

roosty

Hello,
I am looking for anyone who might share their experience with the UF Shands Metastatic Cancer Program?

Also, for the oncologists on this site can you lend your opinion?

My father was diagnosed with Stage IV adenocarcinoma in March of 2012. He underwent 6 rounds of carbo/alimta/avastin and has received 9 rounds of of maintenance chemo of alimta/avastin. He is also receiving Xgeva (which we selected over Zometa after reading the post here about the survival benefit Xgeva can have, THANKS! We believe it!).

My dad has 8 mets I believe. UF Shands criteria appears to be 10 mets or less. He has been accepted as a candidate and we are going visit with them and get an assessment.

Our 2nd opinion oncologist at a large cancer center downplayed treating this many mets. His opinion was that up to 2 mets it’s effective but more than that he didn’t believe we would be treating the patient but we woudl be treating the scan. Why is 2 the magic number? He also stated there is little research on this topic as of now.

My dad still works daily and is active. He has done better than I ever hoped for. We have won for 1 year and it’s my belief if we can continue to win that a new therapy might be available that can turn 1 year into 3 years or more.

Any input and experiences with this type of treatment would be greatly appreciated.

Here is a link to the program website.

https://ufandshands.org/uf-metastatic-cancer-program

Regards,
Shane

March 20, 2013 at 4:02 am  #1254943    

certain spring

Hallo Shane. Sorry to hear about your father’s diagnosis, but glad he is doing so well.
Just to clarify, where are the metastases you refer to? Are they brain mets, or mets elsewhere in the body?


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

March 20, 2013 at 4:07 am  #1254944    

roosty

Certain Spring,
He has bone mets and only bone mets. He had one met on his scapula radiated a year ago at diagnosis and the latest scan shows it is healing up well.

His primary tumor has shrunk 50% from start of treatment. The last 3 PET/CT scans have shown no change in tumor size or uptake. Bone mets appear to be the same but our oncologists have told us bone mets are hard to decipher.

It’s my thought and unmedical opinion we should try and be aggressive as we can in regards to treatments now while my dad is healthy and doing well vs. wait until things change. I know he could go on for a long time on alimta/avastin. I have hope for the virus drug of reolysin as it appears to penetrate mets but it’s only being clincally trialed in Canada in a maintenance setting with alimta.

Regards,
Shane

March 20, 2013 at 7:04 am  #1254949    
catdander forum moderator
catdander forum moderator

Hi Shane, Welcome to Grace. I believe we have a handful of blog/posts that will explain what is known and what is being research in the area of metastatic nsclc. The most important idea about stage IV nsclc is to prolong life while either maintaining quality of life or improving it. Since your dad is feeling so well then it sounds as if you want to maintain stability. What the cancer center is suggesting is not standard of practice but is being studied.

I will leave you with some links that state what some of the experts and researchers are doing. Read through them, look at the further reading options at the end of the posts, check out our “Focused Cancer Info” and our search engine, and by all means ask follow up questions. Note that when using our search you may need to log off depending on your browser, this goes for search results too.

All the very best,
Janine
forum moderator

A note on working outside the “standard” box, http://cancergrace.org/lung/2008/11/01/wirb-beyond-evidence/

Why radiating all the bone mets isn’t standard practice. and the further reading and additional links I think cover most of what’s been written in Grace blog/posts on the subject. Very informative, http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-metastatic-cancer-but-why-cant-it-just-all-be-surgically-removed-or-radiated/

March 20, 2013 at 8:05 pm  #1254972    
Dr West
Dr West

Shane,

I and just about all lung cancer experts agree with your oncologist that there would be somewhere between incredibly little and absolutely no value at all to focal radiation to 8 lesions. There isn’t anything magical about two lesions, but the concept of “oligometastatic”, which you can find plenty of discussions about here, is that there MIGHT be some value to doing local therapy if someone has an extremely limited amount of metastatic disease that is active. That isn’t to say that there’s actually good evidence to say it should be done…it’s potentially just the prevailing bias that more is better, and it doesn’t hurt that the US system pays to do more treatment, so doctors and institutions are incentivized to not just treat to the point of what makes sense, but to treat well beyond that point if it’s profitable.

So basically, if it could potentially be sensible to do local therapy for oligometastatic disease, that makes far more sense for one lesion than more than one, and you might possibly torture the definition of oligometastatic to include 2 or 3 lesions, but beyond that, it’s not remotely oligometastatic — it’s just metastatic. And there is no evidence or even clear rationale to think that treating 5 or 8 or 10 lesions with localized therapy for metastatic lung cancer is a good idea, unless your goal is to get paid to do more and more and more therapy, no matter how bad an idea it is.

Please note that I don’t have anything to do with UF Shands and am nearly 3000 miles away. I don’t have a horse in this race. I’m not saying that the UF Shands is just doing this program to make money, but I’d bet anything that if they weren’t getting paid well to do it, they wouldn’t have a remote interest in doing it as a charitable service for needy patients. I don’t know if the underlying incentive is financial motivate or an absence of any knowledge of cancer biology. But the only reason to market this is greed or ignorance.

-Dr. West

March 22, 2013 at 6:55 am  #1255016    

Dr. Weiss

Shane,

A few years ago, Dr. Pinder did a piece on stereotactic radiation for oligometastatic disease based on work by Dr. Paul Okunieff just about the time when he left Florida to lead UF Shands. You might find it interesting and can find it at http://cancergrace.org/radiation/2009/12/06/well-knock-me-over-with-a-photon-curative-sbrt-for-metastatic-disease/

Stereotactic radiation for oligometastatic disease has never been proven to help. Those who are enthusiastic about it will point to small case series like the one Dr. Pinder shows that have a “tail” to the curve of patients with longer survival than typical for their diseases. Those who disagree will point to older case series without sbrt that also have tails and argue that some patients would do well no matter what we do.

Perhaps the most important point is Dr. West’s regarding the definition of oligometastatic disease. Different series have argued it differently, but I’m not aware of a major published report that used a number higher than 5. Above that point, most docs just consider it systemic.

One final point worth discussing is what the downsides to the radiation are. Potential side effects and risks are largely defined by the size of the lesions and their locations; the radiation oncologist can counsel about this. What are the financial expenses? It’s one thing to go broke for proven or even very promising therapy, but another to do so for very unproven non-conventional therapy.

March 22, 2013 at 7:15 am  #1255018    

roosty

Thank you all for your input. We have made an appointment at UF Shands to have my father’s case reviewed. We will see what they have to say. I don’t know what they will recommend. At this point in time all we have is what is on the website. I have reviewed the information on this site and some other studies I have found.
I have read some information that microRNA-200c can predict a response to radiation therapy and if the cancer will continue to spread?

I will let you know what, if anything comes our visit and hopefully we can all learn from it.

Regards,
Shane

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