Anyone familiar with Proton Therapy and side effects of this treatment?

My husband had 35 proton beam therapy treatments for HPV+ BOT Oropharyngeal cancer with one lymph node with SCC on left side of neck. No surgery. He also had weekly Cisplatin. They treated both sides of his neck but the left side received more radiation than the right. The side effects can be the same as with IMRT but not as bad. His oncologist kept stressing that everyone is different. (We considered buying him at t-shirt that says that.) They've proven that proton therapy is as effective as IMRT but not that side effects are any better.  There is no "exit damage" but there is still entrance damage  

In my husband's case, he was fine until week 3 when he started to lose his taste and then his saliva. The saliva glands near the front of his chin were spared and likely would have been damaged by IMRT. He did have some bad burns on left side of his neck. He lost some hair behind his left ear and on left side of face and neck. The good news is that he did not have a PEG tube. His oncologist told him that only about 20% of his proton beam therapy patients for this particular cancer need feeding tubes. 

My husband lost 30 pounds as he was on a mostly liquid diet for two months. The good news is that one month post-treatment he ate a complete normal meal at a restaurant and has been eating regular meals since then. 

Let me know if you want any other specific information. Definitely discuss pros and cons with both an IMRT and  a Proton oncologist. We did and that helped in our decision making. We actually relocated for two months so he could be treated at Scripps. 

Nancy

Was your treatment covered by insurance? My carrier United recently denied coverage for proton therapy. I was scheduled to begin next week.

Blasty said:

Proton therapy

I'm sorry to hear that you were turned down.  But hopefully your doctors can appeal and get the decision reversed.  I have already had the surgery which turned out great, cancer free with clear margins.  I am waiting to hear from my doctors if the Proton Therapy is needed.  The way it was explained to me was the first time the insurance always denies, then the doctors appeal. The doctor explains why Proton Therapy is necessary.  It seems like it has good benefits for head and neck patients. Hopefully your doctors can get the decision reversed.  Good luck.

I was told by Procure that this is common and they appeal on your behalf. If they lose the appeal, they eat the costs. It is not passed onto the patient. Good news.

stevenpepe said:

Was your treatment covered by

Was your treatment covered by insurance? My carrier United recently denied coverage for proton therapy. I was scheduled to begin next week.

My husband's proton treatment was covered by medicare.  I'm not aware of a denial and appeal.

Hi,

My mother has been diagnosed with breast cancer. We are planning to go for proton therapy.

Can anyone suggest the approximate cost of proton therapy?

How many cycles are needed and how much it costs each cycle in USA ?

I know this post is a bit old but I thought I'd pass along my progress and side effects from the proton therapy.

As I said in November 2016, just prior to treatment, my insurance denied all coverage. I went anyway and took my chances not willing to risk my health over the issue. I'm happy I did. The cost was very high. Each treatment billed my insurer $7,800. Times that by 35 and you can see the final billing is out of reach of most people.

At the end of treatment, the clinic appealed with my insurer and lost. However, a second appeal with an independent doctor reversed their denial and all costs were paid, aside from $15,000 in deductibles I had to meet as an out-of-network provider. A small cost to pay considering what I could have been facing.

But the fun didn't end there. I'm one of the lucky folks who actually endured double surgery and treatment all in the same year. The IMRT did enough damage to my neck in terms of fibrosis, but the proton really did significant damage.

My tumor was just below my jawline close to the masseter muscle which is located around the jaw joint. About six months ago, scar tissue in that muscle began to develop and has swelled my face in that area. What's worse, the muscle spasms violently and painfully tightens when stressed, completely locking my jaw. It lasts about a minute and occurs about 3-5 times an hour. It's terrible.

You can imagine how it's affected my life. Talking, swalliowing, eating, dental care, have all become a challenge. My mouth opening is now limited to just 20mm and closing.

My health plan moving forward now includes physical therapy to help loosen the skin and relax the muscle, if that's possible. Botox is also an option to help stop the spasms and I need to have my carotid checked (as we all do) since the beam was focused so close to it. I've invested in a Therabite to help open my jaw but the stress it places on the masseter muscle causes it to lock my jaw up. Good times! Doctors have now suggested the Dynasplint Jaw Device, which is a hand-less model that allows for longer opening times without the need to hold it. That one costs $5,000 so my insurance will need to be tested once again. I thought Therabite was expensive at just $450, which I bought outright because of insurance denials.

I am grateful to be cancer-free in spite of this. The doctors tend to sugar-coat the potential side effects of radiation for fear of scaring patients off. Destroying the cancer is paramount so I guess you can't blame them. But radiation and human tissue don't mix well.

I hope everyone is recovering well from their treatments.

stevenpepe said:

My side effects

I know this post is a bit old but I thought I'd pass along my progress and side effects from the proton therapy.

As I said in November 2016, just prior to treatment, my insurance denied all coverage. I went anyway and took my chances not willing to risk my health over the issue. I'm happy I did. The cost was very high. Each treatment billed my insurer $7,800. Times that by 35 and you can see the final billing is out of reach of most people.

At the end of treatment, the clinic appealed with my insurer and lost. However, a second appeal with an independent doctor reversed their denial and all costs were paid, aside from $15,000 in deductibles I had to meet as an out-of-network provider. A small cost to pay considering what I could have been facing.

But the fun didn't end there. I'm one of the lucky folks who actually endured double surgery and treatment all in the same year. The IMRT did enough damage to my neck in terms of fibrosis, but the proton really did significant damage.

My tumor was just below my jawline close to the masseter muscle which is located around the jaw joint. About six months ago, scar tissue in that muscle began to develop and has swelled my face in that area. What's worse, the muscle spasms violently and painfully tightens when stressed, completely locking my jaw. It lasts about a minute and occurs about 3-5 times an hour. It's terrible.

You can imagine how it's affected my life. Talking, swalliowing, eating, dental care, have all become a challenge. My mouth opening is now limited to just 20mm and closing.

My health plan moving forward now includes physical therapy to help loosen the skin and relax the muscle, if that's possible. Botox is also an option to help stop the spasms and I need to have my carotid checked (as we all do) since the beam was focused so close to it. I've invested in a Therabite to help open my jaw but the stress it places on the masseter muscle causes it to lock my jaw up. Good times! Doctors have now suggested the Dynasplint Jaw Device, which is a hand-less model that allows for longer opening times without the need to hold it. That one costs $5,000 so my insurance will need to be tested once again. I thought Therabite was expensive at just $450, which I bought outright because of insurance denials.

I am grateful to be cancer-free in spite of this. The doctors tend to sugar-coat the potential side effects of radiation for fear of scaring patients off. Destroying the cancer is paramount so I guess you can't blame them. But radiation and human tissue don't mix well.

I hope everyone is recovering well from their treatments.

Hi Steve,

Didn't you have recurrence as well? Are you suggesting proton might create greater side effects than IMRT? Just curious as one generally gets the impression that proton is more targeted so less side effects. BTW - don't feel bad about the fibrosis. The main long neck muscles remind most days that I am an oral cancer radiated survivor.