If You or a Loved One have Cancer...

[Wwwildthing]

Google - Proton Therapy

...and don't stop reading until you have the answers you need.

 

[Double T]

Don't even get me started. My wide has a disease that isnt classified as malgnant lymphoma...but if untreated can lead to hodgkins lymphoma...

Anyway, I can't get her insurance...nor can I afford to get her a biopsy to diagnose that she has this all over. Since its not "multicentric" on paper from a lab, she cant get disability in order to get medicaid...

Oh, and even if she would...the only specialists nationally are at MD Anderson...and they want $15k before they will even give us an initial consultation...

We have called many, many places...and I make too much to qualify for payment assistance. Only other alternative is to go move to Texas and after 6 months ask for grant money...

The healthcare system in this country is $:$$:$. /end rant


Good read, I just don't understand how they get it to not mess up skin cell DNA.

 

[rotortech]

I am a cancer patient so I read pretty much everything available. Proton therapy is a bit like radiation in a more focused beam, much like a laser beam. It is easy to get excited about this treatment or that treatment but there is no ONE treatment for cancer. Once you get into the details you find that a particular treatment works for a specific cancer type. Since cancer cells are normal cells that have gone through several mutations - sometimes over 100 mutations - there are thousands of different types of cancers. These are broadly classified by Oncologists under different cell types with names like squamous cell carcinoma (that is what they call mine). Some of these cells respond well to surgery only, some do well with surgery plus chemo plus radiation.

Double T - My heart goes out to you and your wife at this time. I am fortunate enough to have insurance at the moment. As a good friend told me "In this country, we are all just one medical emergency away from financial ruin."

Regarding the comment about MD Anderson - my Medical Oncologist coordinated my treatment plan with both MD Anderson and Sloane Kettering in NY. This was all done locally from St. Vincent Cancer Center. Please don't assume that you can't get the care you need with the latest information right here in Indy. I had to fire some doctors and switch hospitals to get proper treatment, but I did it.

 

[Double T]

We've been to the Simon Cancer Institute. The dept heads hadn't even treated someone with her condition. They ran some labs and said "We can't help". Wasted a 3 hr drive.

She has Castleman's disease. Super rare, and often associated with end stage HIV/AIDS. She has neither...which is wht the IU Med guy said he couldn't help.

 

[Wwwildthing]

I have squamous cell carcinoma, originating in the left tonsil.

I went to 2 cancer specialists (Indianapolis and Shelbyville), both wanted to do radical procedures... pull all of my teeth, insert a feeding tube and a peg for chemo and use full-dose radiation.

If you know anyone who's gone this route, you'll understand why I tried to avoid it.

Sadly - none of them knew a thing about Proton Beam Therapy... a similar method of delivery, but with few-to-no side effects... that is used to treat the same cancers as conventional radiation therapy.

I've spent the last year on painkillers while searching for an alternative method of treatment... one that will provide me with a quality of life, after treatment... something 'conventional treatment' would not.

 

[Wwwildthing]

We've been to the Simon Cancer Institute. The dept heads hadn't even treated someone with her condition. They ran some labs and said "We can't help". Wasted a 3 hr drive.

She has Castleman's disease. Super rare, and often associated with end stage HIV/AIDS. She has neither...which is wht the IU Med guy said he couldn't help.

I Googled 'Castleman's Disease'... the 2nd link was Mayo Clinic...

Castleman disease - MayoClinic.com

 

[Double T]

Yep. There is no treatment centers locally. That's what sucks. Sorry for the thread jack

 

[Wwwildthing]

Proton Therapy is available in Bloomington... the specialists in Indianapolis and Shelbyville never mentioned it as a option.

I'm guessing it had something to do with their pocketbook.

 

[Wwwildthing]

https://www.castlemansresearch.com/ - Clinical studies are underway with open enrollment.

Google is your friend.

 

[rotortech]

This thread is a great example of how cancer patients need to do plenty of research regarding their own treatment. Wwwildthing - I hope the link you provided will help Double T.

 

[Double T]

We've enrolled. She wasn't accepted as we are still pursuing a diagnosis of multicentric disease. (ie no surgeon wants to do it for a private payor).

Stinks, but thay's life. Enough about me, I still want to know how a proton can do this selectively and what the cost will be.

The cost of a Particle accelerator is huge...as is the size of one. I'd also like to know where these particles are coming from and what unstable byproducts they will create??

Edit: we are very educated on the disease. It's so rare that the majority of physicians have only heard of it once in med school. All of the docs (except for like 3) we have had to explain it (often in common language)

 

[Mr. Habib]

Proton Therapy is available in Bloomington... the specialists in Indianapolis and Shelbyville never mentioned it as a option.

I'm guessing it had something to do with their pocketbook.

If you decide to come done here for treatments let me know. I'll make sure to throw a bucket of fresh particles in the machine for you.

 

[Wwwildthing]

If you decide to come done here for treatments let me know. I'll make sure to throw a bucket of fresh particles in the machine for you.

Thanks... I appreciate that.

I think.

 

[Mr. Habib]

I still want to know how a proton can do this selectively and what the cost will be.
I have no idea as to cost. That would vary depending on the patient and treatment involved.
Protons dump all of their energy in water or tissue at a very specific depth depending on their initial energy due to a property known as the Bragg peak.

I'd also like to know where these particles are coming from?

The protons come from, at least in our facility, from hydrogen atoms.

and what unstable byproducts they will create??

Not sure what you're asking here. If you're asking if the tissue itself is made radioactive, then no it is not.

The big advantage of Proton Oncology is the fact that there is very little damage to surrounding tissues like there will be in traditional Radiotherapy. This allows the doctors to successfully treat tumors in locations where damage to surrounding tissue is a concern,or places where surgery is not a viable option, such as the eyes, head, neck, spine, and prostate, We can treat with an accuracy of about +/_ 1mm here.

 

[Mr. Habib]

Thanks... I appreciate that.

I think.

Sorry, after you've worked around a particle accelerator for 26 years, your sense of humor gets a bit twisted.

 

[Double T]

I still want to know how a proton can do this selectively and what the cost will be.
I have no idea as to cost. That would vary depending on the patient and treatment involved.
Protons dump all of their energy in water or tissue at a very specific depth depending on their initial energy due to a property known as the Bragg peak.

I'd also like to know where these particles are coming from?

The protons come from, at least in our facility, from hydrogen atoms.

and what unstable byproducts they will create??

Not sure what you're asking here. If you're asking if the tissue itself is made radioactive, then no it is not.

The big advantage of Proton Oncology is the fact that there is very little damage to surrounding tissues like there will be in traditional Radiotherapy. This allows the doctors to successfully treat tumors in locations where damage to surrounding tissue is a concern,or places where surgery is not a viable option, such as the eyes, head, neck, spine, and prostate, We can treat with an accuracy of about +/_ 1mm here.

Thank you, that answered a bit