nikkibeesley00

Hi Daisy, I'm Stage 3B and currently on Opdivo. The only side effect I've had was diarrhea which was severe at first but immodium every 24 hours completely takes care of that problem. I've had 10 rounds so far and just had my first progress scans this week, 50% skrinage or more in all my tumors. I'm very excited! According to my melanoma specialist he wanted to try this first and see if it worked before advacing to Keytruda or one of the other combination therapies. At this point in time so many treatments are becoming available and they are mixing and matching to do combos I dont think it matters unless you have BRAF positive (I am not). My doctor feels like once one thing stops working we will try the next whether that be Keytruda, Yervoy, or some combination of them. If you trust your doctor I would go with his first suggestion as long as he feels comfortable using the next as a "back up". Personally I like knowing my doctor has a Plan B in his pocket just in case. For reference, I am unknown primary, first spot was in my parotid gland, had that removed along with a neck dissection of all lymph nodes which came back clean. Did 25 rounds of radiation (which SUCKED!) for insurance and thought i was clean. 6 months later I woke up this April not being bale to move the right side of my face, doctors thought it was Bells Palsy but a CT scan revelaed the melanoma moved to my brain and began to bleed. I had a successful crainiotomy and then 2 months later during a routine colonoscopy they thought they perforted my bowel but instead accidently found a tumor. I had 20 and 30 cm of my small and large instentines removed and all came back positive for melanoma. I immediately began Opdivo and so far we are doing good! Let us know how you are doing and what treatment you began, I am curious to see how you are progressing! Wishing you all the best! 

Hi Daisy, I'm Stage 3B and currently on Opdivo. The only side effect I've had was diarrhea which was severe at first but immodium every 24 hours completely takes care of that problem. I've had 10 rounds so far and just had my first progress scans this week, 50% skrinage or more in all my tumors. I'm very excited! According to my melanoma specialist he wanted to try this first and see if it worked before advacing to Keytruda or one of the other combination therapies. At this point in time so many treatments are becoming available and they are mixing and matching to do combos I dont think it matters unless you have BRAF positive (I am not). My doctor feels like once one thing stops working we will try the next whether that be Keytruda, Yervoy, or some combination of them. If you trust your doctor I would go with his first suggestion as long as he feels comfortable using the next as a "back up". Personally I like knowing my doctor has a Plan B in his pocket just in case. For reference, I am unknown primary, first spot was in my parotid gland, had that removed along with a neck dissection of all lymph nodes which came back clean. Did 25 rounds of radiation (which SUCKED!) for insurance and thought i was clean. 6 months later I woke up this April not being bale to move the right side of my face, doctors thought it was Bells Palsy but a CT scan revelaed the melanoma moved to my brain and began to bleed. I had a successful crainiotomy and then 2 months later during a routine colonoscopy they thought they perforted my bowel but instead accidently found a tumor. I had 20 and 30 cm of my small and large instentines removed and all came back positive for melanoma. I immediately began Opdivo and so far we are doing good! Let us know how you are doing and what treatment you began, I am curious to see how you are progressing! Wishing you all the best! 

Hi Daisy, I'm Stage 3B and currently on Opdivo. The only side effect I've had was diarrhea which was severe at first but immodium every 24 hours completely takes care of that problem. I've had 10 rounds so far and just had my first progress scans this week, 50% skrinage or more in all my tumors. I'm very excited! According to my melanoma specialist he wanted to try this first and see if it worked before advacing to Keytruda or one of the other combination therapies. At this point in time so many treatments are becoming available and they are mixing and matching to do combos I dont think it matters unless you have BRAF positive (I am not). My doctor feels like once one thing stops working we will try the next whether that be Keytruda, Yervoy, or some combination of them. If you trust your doctor I would go with his first suggestion as long as he feels comfortable using the next as a "back up". Personally I like knowing my doctor has a Plan B in his pocket just in case. For reference, I am unknown primary, first spot was in my parotid gland, had that removed along with a neck dissection of all lymph nodes which came back clean. Did 25 rounds of radiation (which SUCKED!) for insurance and thought i was clean. 6 months later I woke up this April not being bale to move the right side of my face, doctors thought it was Bells Palsy but a CT scan revelaed the melanoma moved to my brain and began to bleed. I had a successful crainiotomy and then 2 months later during a routine colonoscopy they thought they perforted my bowel but instead accidently found a tumor. I had 20 and 30 cm of my small and large instentines removed and all came back positive for melanoma. I immediately began Opdivo and so far we are doing good! Let us know how you are doing and what treatment you began, I am curious to see how you are progressing! Wishing you all the best! 

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! 

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 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! 

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 everyone, I've had 10 rounds of Opdivo with severe diarrhea at first. The doctor put me on steriods and that helped but every time i came off it would recur. Knowing this was a side effect I tried to deal with it and a nurse friend of mine suggested trying immodium, I tried it and it worked! I was having diarrhea 6-7 times a day, now I have either a regular bowel movement with a stomach ache and i immediately take the immodium or i will have 1-2 rounds of diarrhea and take the immudiom and everything is fine. My onologist knows and is fine with this and I actually started to put on weight! Basically I take 2 immodium every 24 hours, the further away from treatment i get (every two weeks so at the end of my two week cycle) it starts to flare up again and I may have to take an extra one but you can take up to 4 in a 24 hour period. So far its been working great for me and my tumors have shrunk 50% according to my first progress scans i just had done so to anyone experiecing this I would say try immudiom, i use the CVS or Walmart brand in the gel capsules because the name brand is expensive and also dissovles in your mouth making it very unpleasant to take! Hope this helps someone else!!!!! 

Hi everyone, I've had 10 rounds of Opdivo with severe diarrhea at first. The doctor put me on steriods and that helped but every time i came off it would recur. Knowing this was a side effect I tried to deal with it and a nurse friend of mine suggested trying immodium, I tried it and it worked! I was having diarrhea 6-7 times a day, now I have either a regular bowel movement with a stomach ache and i immediately take the immodium or i will have 1-2 rounds of diarrhea and take the immudiom and everything is fine. My onologist knows and is fine with this and I actually started to put on weight! Basically I take 2 immodium every 24 hours, the further away from treatment i get (every two weeks so at the end of my two week cycle) it starts to flare up again and I may have to take an extra one but you can take up to 4 in a 24 hour period. So far its been working great for me and my tumors have shrunk 50% according to my first progress scans i just had done so to anyone experiecing this I would say try immudiom, i use the CVS or Walmart brand in the gel capsules because the name brand is expensive and also dissovles in your mouth making it very unpleasant to take! Hope this helps someone else!!!!! 

Hi everyone, I've had 10 rounds of Opdivo with severe diarrhea at first. The doctor put me on steriods and that helped but every time i came off it would recur. Knowing this was a side effect I tried to deal with it and a nurse friend of mine suggested trying immodium, I tried it and it worked! I was having diarrhea 6-7 times a day, now I have either a regular bowel movement with a stomach ache and i immediately take the immodium or i will have 1-2 rounds of diarrhea and take the immudiom and everything is fine. My onologist knows and is fine with this and I actually started to put on weight! Basically I take 2 immodium every 24 hours, the further away from treatment i get (every two weeks so at the end of my two week cycle) it starts to flare up again and I may have to take an extra one but you can take up to 4 in a 24 hour period. So far its been working great for me and my tumors have shrunk 50% according to my first progress scans i just had done so to anyone experiecing this I would say try immudiom, i use the CVS or Walmart brand in the gel capsules because the name brand is expensive and also dissovles in your mouth making it very unpleasant to take! Hope this helps someone else!!!!!