Latest surgery now today, questions on upcoming radiation plans

Hi J, I had stage 2B melanoma in my parotid gland (its a salivory gland behind your ear) i had the gland removed with clear margins and 21 lymph nodes removed which also came back clear. I then did 25 rounds of proton beam radiation therapy and it was a bitch. Here's what i wish i knew (and this may be specific to me but just an FYI because all the possible side effects always seem to happen to me) 

1. Started with burns on my skin all around my neck and ear area, by the end it was so bad you would've thought i ran through a fire. 

2. When they radiate near your neck area and again this may be specific to my case, they were killing all the healthy tissue etc from my jaw line all over the right side of neck, they were also killing and interuppting these things calling HT3 receptor cells which communicate with your gut, it made me SEVERELY sick (throwing up) the whole month AFTER i finsihed radiation. i wasn't sick during, it was afterwards when the burns finally got worse. it was a kind of build up thing, when your going through it it wasnt bad but you finish and all of a sudden it hit me.

3. i lost my sense of taste and could not swallow anything. I was taking lidocaine to numb my throat but everything hurt, i lived on pudding and baby food and shakes. 

4. i lost hearing in my right ear the entire month after radiation stopped. at first it happened slowly, i got a ringing in my ear that would come and go and then it gave out completely. i never thought i would hear again, one day before my follow up with my radiatologist it came back (THANK GOD!) but it was scarey and frustrating. and loosing it completely is a possible side effect, or the constant ringing. Sometimes to this day i still get a high pitched ringing but it comes and goes within a minute. 

I wish i could say whether it was helpful or not but i received radiation in December 2014 and in April 2015 I woke up with facial paralysis which unfortunately turned out to be the melanoma in my brain. i had that sucessfully removed and we also found spots on my liver and instestines and several surgeries and 11 treatments of Opdivo later my tumors/lesions have all shrunk by 50% so i am doing great now! Those are just the things i wish someone wouldve clearly told me would happen when i was going through radiation. Whether it helped or not i can't say, it spread anyways but who knows if it would have been worse had i not done that. I really do reccomment immunotherapy though, i see a melanoma specialist and previsouly to my getting sick i worked in the pharmaceutical industry and also had a friend who underwent chemotherapy and radiation for cervical cancer and honestly i dont think that by destroying your body in those ways is that effective. to a point, yes, i also had to undergo another round of radiation after my brain surgery but it was one round and called gamma knife which is even more precise then traidation or proton beam radiation. i would say if the doctor is recommending it, do it, because you never want to say, "What if…" but expect the worst and if it doesn't turn out so bad then great! Good luck to you and your family! 

Oh and also, i lost all the hair from my ears down on the back of my head, luckily as a female i had long hair and keep it down. It took about 3-4 months but it finally started growing back in, im a blonde but it is growing it dark and curly which i have heard can happen! hope all this helps you!

Oh and also, i lost all the hair from my ears down on the back of my head, luckily as a female i had long hair and keep it down. It took about 3-4 months but it finally started growing back in, im a blonde but it is growing it dark and curly which i have heard can happen! hope all this helps you!

Oh and also, i lost all the hair from my ears down on the back of my head, luckily as a female i had long hair and keep it down. It took about 3-4 months but it finally started growing back in, im a blonde but it is growing it dark and curly which i have heard can happen! hope all this helps you!

Hi, Yes, I had my neck radiation at Morristown, with Dr. Yana Goldberg. I see Dr. Eric Whitman a melanoma specialist at Morristown as well. If you have any questions please feel free to reach out! Im happy to share my experiences with anyone! 

Hi, Yes, I had my neck radiation at Morristown, with Dr. Yana Goldberg. I see Dr. Eric Whitman a melanoma specialist at Morristown as well. If you have any questions please feel free to reach out! Im happy to share my experiences with anyone! 

Hi, Yes, I had my neck radiation at Morristown, with Dr. Yana Goldberg. I see Dr. Eric Whitman a melanoma specialist at Morristown as well. If you have any questions please feel free to reach out! Im happy to share my experiences with anyone! 

I think that the "what if's" work both ways.  My experience would have been "what if" we didn't do radiation. It was a horrible experience and the beginning of a downward spiral.  Because of radiation, ipi was deferred for too long (and too late) for my spouse.  Radiation was completed approx 6 weeks following a neck CLND, and then ipi started 3 months after radiation was completed. From what I read here, that doesn't seem right.

Like someone else said here-good for you for checking everything out and not just following your doctor's advice blindly.

Best WIshes to you. Please let us know how it goes.

I think that the "what if's" work both ways.  My experience would have been "what if" we didn't do radiation. It was a horrible experience and the beginning of a downward spiral.  Because of radiation, ipi was deferred for too long (and too late) for my spouse.  Radiation was completed approx 6 weeks following a neck CLND, and then ipi started 3 months after radiation was completed. From what I read here, that doesn't seem right.

Like someone else said here-good for you for checking everything out and not just following your doctor's advice blindly.

Best WIshes to you. Please let us know how it goes.

I think that the "what if's" work both ways.  My experience would have been "what if" we didn't do radiation. It was a horrible experience and the beginning of a downward spiral.  Because of radiation, ipi was deferred for too long (and too late) for my spouse.  Radiation was completed approx 6 weeks following a neck CLND, and then ipi started 3 months after radiation was completed. From what I read here, that doesn't seem right.

Like someone else said here-good for you for checking everything out and not just following your doctor's advice blindly.

Best WIshes to you. Please let us know how it goes.

Hi J, I had stage 2B melanoma in my parotid gland (its a salivory gland behind your ear) i had the gland removed with clear margins and 21 lymph nodes removed which also came back clear. I then did 25 rounds of proton beam radiation therapy and it was a bitch. Here's what i wish i knew (and this may be specific to me but just an FYI because all the possible side effects always seem to happen to me) 

1. Started with burns on my skin all around my neck and ear area, by the end it was so bad you would've thought i ran through a fire. 

2. When they radiate near your neck area and again this may be specific to my case, they were killing all the healthy tissue etc from my jaw line all over the right side of neck, they were also killing and interuppting these things calling HT3 receptor cells which communicate with your gut, it made me SEVERELY sick (throwing up) the whole month AFTER i finsihed radiation. i wasn't sick during, it was afterwards when the burns finally got worse. it was a kind of build up thing, when your going through it it wasnt bad but you finish and all of a sudden it hit me.

3. i lost my sense of taste and could not swallow anything. I was taking lidocaine to numb my throat but everything hurt, i lived on pudding and baby food and shakes. 

4. i lost hearing in my right ear the entire month after radiation stopped. at first it happened slowly, i got a ringing in my ear that would come and go and then it gave out completely. i never thought i would hear again, one day before my follow up with my radiatologist it came back (THANK GOD!) but it was scarey and frustrating. and loosing it completely is a possible side effect, or the constant ringing. Sometimes to this day i still get a high pitched ringing but it comes and goes within a minute. 

I wish i could say whether it was helpful or not but i received radiation in December 2014 and in April 2015 I woke up with facial paralysis which unfortunately turned out to be the melanoma in my brain. i had that sucessfully removed and we also found spots on my liver and instestines and several surgeries and 11 treatments of Opdivo later my tumors/lesions have all shrunk by 50% so i am doing great now! Those are just the things i wish someone wouldve clearly told me would happen when i was going through radiation. Whether it helped or not i can't say, it spread anyways but who knows if it would have been worse had i not done that. I really do reccomment immunotherapy though, i see a melanoma specialist and previsouly to my getting sick i worked in the pharmaceutical industry and also had a friend who underwent chemotherapy and radiation for cervical cancer and honestly i dont think that by destroying your body in those ways is that effective. to a point, yes, i also had to undergo another round of radiation after my brain surgery but it was one round and called gamma knife which is even more precise then traidation or proton beam radiation. i would say if the doctor is recommending it, do it, because you never want to say, "What if…" but expect the worst and if it doesn't turn out so bad then great! Good luck to you and your family! 

Hi J, I had stage 2B melanoma in my parotid gland (its a salivory gland behind your ear) i had the gland removed with clear margins and 21 lymph nodes removed which also came back clear. I then did 25 rounds of proton beam radiation therapy and it was a bitch. Here's what i wish i knew (and this may be specific to me but just an FYI because all the possible side effects always seem to happen to me) 

1. Started with burns on my skin all around my neck and ear area, by the end it was so bad you would've thought i ran through a fire. 

2. When they radiate near your neck area and again this may be specific to my case, they were killing all the healthy tissue etc from my jaw line all over the right side of neck, they were also killing and interuppting these things calling HT3 receptor cells which communicate with your gut, it made me SEVERELY sick (throwing up) the whole month AFTER i finsihed radiation. i wasn't sick during, it was afterwards when the burns finally got worse. it was a kind of build up thing, when your going through it it wasnt bad but you finish and all of a sudden it hit me.

3. i lost my sense of taste and could not swallow anything. I was taking lidocaine to numb my throat but everything hurt, i lived on pudding and baby food and shakes. 

4. i lost hearing in my right ear the entire month after radiation stopped. at first it happened slowly, i got a ringing in my ear that would come and go and then it gave out completely. i never thought i would hear again, one day before my follow up with my radiatologist it came back (THANK GOD!) but it was scarey and frustrating. and loosing it completely is a possible side effect, or the constant ringing. Sometimes to this day i still get a high pitched ringing but it comes and goes within a minute. 

I wish i could say whether it was helpful or not but i received radiation in December 2014 and in April 2015 I woke up with facial paralysis which unfortunately turned out to be the melanoma in my brain. i had that sucessfully removed and we also found spots on my liver and instestines and several surgeries and 11 treatments of Opdivo later my tumors/lesions have all shrunk by 50% so i am doing great now! Those are just the things i wish someone wouldve clearly told me would happen when i was going through radiation. Whether it helped or not i can't say, it spread anyways but who knows if it would have been worse had i not done that. I really do reccomment immunotherapy though, i see a melanoma specialist and previsouly to my getting sick i worked in the pharmaceutical industry and also had a friend who underwent chemotherapy and radiation for cervical cancer and honestly i dont think that by destroying your body in those ways is that effective. to a point, yes, i also had to undergo another round of radiation after my brain surgery but it was one round and called gamma knife which is even more precise then traidation or proton beam radiation. i would say if the doctor is recommending it, do it, because you never want to say, "What if…" but expect the worst and if it doesn't turn out so bad then great! Good luck to you and your family!