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

Blasty

I am considering Proton Therapy.  How bad are the side effects compared to IMRT radiation?

Nancy24

Everyone is different

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

Blasty

Nancy24 said:

Everyone is different

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

Proton beam therapy

Thank you Nancy for replying.  It is very helpful to hear from someone who has been through it.  I'm glad to hear your husband is doing so much better, able to eat regular meals.  Has he regained his taste and smell and saliva?  How hard is it for him to swallow?  Will his hair grow back? These are some of the long term side effects that I worry about.  I've had my operation for esthesioneuroblastoma and I am doing great, but afraid of all the long term side effects of radiation.  I thought Proton therapy would not have all the bad side effects, but I am quickly learning different.

stevenpepe

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.

Blasty

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.

stevenpepe

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

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.

Blasty

stevenpepe said:

I was told by Procure that

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.

That's great!

That's great.  Hopefully in another week you will start your treatments.  I was told the appeal is very fast.  Good luck with your therapy. 

Nancy24

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.

Treatment was covered

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

Nancy24

Blasty said:

Proton beam therapy

Thank you Nancy for replying.  It is very helpful to hear from someone who has been through it.  I'm glad to hear your husband is doing so much better, able to eat regular meals.  Has he regained his taste and smell and saliva?  How hard is it for him to swallow?  Will his hair grow back? These are some of the long term side effects that I worry about.  I've had my operation for esthesioneuroblastoma and I am doing great, but afraid of all the long term side effects of radiation.  I thought Proton therapy would not have all the bad side effects, but I am quickly learning different.

Side Effects 3 months post-treatment

Everyone is different, but my husband began to regain taste 1 month post-treatment.  At 3 months his taste is continuing to improve but he says that some tastes aren't as intense as they used to be. Also, some foods taste good for the first few bites and then they don't taste as good for subsequent bites.  He doesn't like anything spicy yet and for some reason he doesn't like peanut butter anymore although that can change. Keep in mind that he also had 7 Cisplatin treatments which also impacted his taste although the chemo may not be impacting it at this point - just the radiation.

His ability to swallow was impacted by swelling in his throat from the radiation.  That was one of the first things to go away post-treatment (after neck burns) and he started swallowing pretty well within a month of his last treatment.

Saliva is recovering much more slowly that taste.  The saliva glands at the very front of his mouth were not impact by proton therapy and they would have been impacted by IMRT so he does have some saliva.  But if he talks for very long his mouth gets very dry.  And he has to drink while eating to get the food down.  I assume his hair will grow back.  It's a small wedge behind his ear - he's not happy about it but he also can't see it so I told him to get over it.  It's the least of his problems.  I think the hair on his neck/side of his face is starting to come back.

He never lost his sense of smell as his primary tumor was at the base of his tongue.  In fact, his sense of smell actually became more acute for awhile during treatment.  I remember him smelling something "bad" in the refrigerator that I couldn't smell and usually I'm the one with the better sense of smell.  He finally tracked down the cause of the smell and when I opened the container it was overwhelming.  But I never did smell it while the container was closed in the refrigerator.

Hope that answers your questions.  Sorry I didn't see your posting right away.  I'll check in more often in case you have more questions.

Nancy

Vinaysinghal

Hi,

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 ?

dnelson964

Proton therapy vs Radiation

I combined Proton therapy with Radiation treatment to treat a stage IV Sinus cancer tumor (squamous cell). I got the 2 doctors together to figure it out because I was at risk of losing my left eye sight if only went with radiation. I am glad I did as I kept my left eye sight in the end and am now cancer free. The Proton beam is more direct and stops no deeper then necessary to hit the cancer tissue. It uses MRI results to focus its hit field. There is Less over shoot and thus is less harmful to surrounding healthy tissue. It is like using a single shot hand gun as opposed to a shot gun effect on the tissue. It is easier to tollerate the after effects also.

stevenpepe

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.

Blasty

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.

Side Effects

Hi Steven, I'm so sorry to hear that you are going through so many problems. I can't give you any personal advice because it turned out that I only needed surgery. I didn't need the radiation because I had a very low grade tumor. I'm doing really good.  I found an old thread about jaw problems after extensive radiation treatment and what each person was doing to help alleviate the problems they were having. It seems your not alone with these symptoms. I hope you can get some ideas from this thread that will help you. You are right. The doctors don't tell you about all the problems you will have long term, but you can find a lot of help on this forum. Your in my prayers.

I hope the following link helps: 

csn.cancer.org/node/180052

donfoo

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.

proton and side effects

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.

stevenpepe

donfoo said:

proton and side effects

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.

Hi Don,

Hi Don,

They call it recurrence but it was a tumor they didn't catch the first round of scans. It was labeled probable inflammation when it was actually a growing tumor. The proton is more targeted but it definitely caused more side effects. Maybe the dosage was higher but the right side of my neck and face is visibly and painfully more scarred than the left. Glad to see you're well.