› Forums › General Melanoma Community › Starting Pembrolizumab-Side Effects?
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Patrisa.
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- April 11, 2016 at 11:21 pm
I am starting Pembrolizumab next Monday. I have a list of possible side effects, but I was wondering when they started? I have two toddlers and am trying to figure out if I will need help the days following treatment. Thank you so much for any answers or advice.
- Replies
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- April 12, 2016 at 1:09 am
Hi there – this may not be too helpful, but it's my understanding that the side effects from any of the immuntherapies are highly unpredictable … any one of the side effects can kick in any day or week or even months after treatment, or there might be no noticeable side effects at all. I know that's hard to plan around, but that's what I was told and what has been my experience as well.
Good luck on Monday! Try to visualize your body healing throughout your first treatment!
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- April 12, 2016 at 1:09 am
Hi there – this may not be too helpful, but it's my understanding that the side effects from any of the immuntherapies are highly unpredictable … any one of the side effects can kick in any day or week or even months after treatment, or there might be no noticeable side effects at all. I know that's hard to plan around, but that's what I was told and what has been my experience as well.
Good luck on Monday! Try to visualize your body healing throughout your first treatment!
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- April 12, 2016 at 1:09 am
Hi there – this may not be too helpful, but it's my understanding that the side effects from any of the immuntherapies are highly unpredictable … any one of the side effects can kick in any day or week or even months after treatment, or there might be no noticeable side effects at all. I know that's hard to plan around, but that's what I was told and what has been my experience as well.
Good luck on Monday! Try to visualize your body healing throughout your first treatment!
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- April 12, 2016 at 12:10 pm
I have to agree that there is a wide variety of side effects. Some folks get colitis, significant fatigue, cough, nausea, itching, rash, decreased appetite, constipation, and/or joint pain. There are other less common side effects. The good news is, they've gotten much better at dosage since trials, so even the worst side effects are reversable and treatable.
I've been on pembro for 13 months (treatment 18 is this week) and i've had itching/dry skin (psoriasias-like) on my hands and feet and limited joint pain (a newish development). However, I'm easily listed on the tolerating "very well" spectrum.
Certainly, if anything feels totally out of whack, call the doctor. I would suggest either getting a little help this week or having someone "on call" in case you do have an issue or feel very tired. After a few doses, you and your docs will have a good idea.
Hang in there and good luck
-Justin
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- April 12, 2016 at 12:10 pm
I have to agree that there is a wide variety of side effects. Some folks get colitis, significant fatigue, cough, nausea, itching, rash, decreased appetite, constipation, and/or joint pain. There are other less common side effects. The good news is, they've gotten much better at dosage since trials, so even the worst side effects are reversable and treatable.
I've been on pembro for 13 months (treatment 18 is this week) and i've had itching/dry skin (psoriasias-like) on my hands and feet and limited joint pain (a newish development). However, I'm easily listed on the tolerating "very well" spectrum.
Certainly, if anything feels totally out of whack, call the doctor. I would suggest either getting a little help this week or having someone "on call" in case you do have an issue or feel very tired. After a few doses, you and your docs will have a good idea.
Hang in there and good luck
-Justin
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- April 12, 2016 at 12:10 pm
I have to agree that there is a wide variety of side effects. Some folks get colitis, significant fatigue, cough, nausea, itching, rash, decreased appetite, constipation, and/or joint pain. There are other less common side effects. The good news is, they've gotten much better at dosage since trials, so even the worst side effects are reversable and treatable.
I've been on pembro for 13 months (treatment 18 is this week) and i've had itching/dry skin (psoriasias-like) on my hands and feet and limited joint pain (a newish development). However, I'm easily listed on the tolerating "very well" spectrum.
Certainly, if anything feels totally out of whack, call the doctor. I would suggest either getting a little help this week or having someone "on call" in case you do have an issue or feel very tired. After a few doses, you and your docs will have a good idea.
Hang in there and good luck
-Justin
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- April 12, 2016 at 4:00 pm
I have had 8 doses of Pembro almost ready to have dose number 9. I have a 3 and 4 year old so I completely understand your positiion. While the side effects are individualized and varied, after first dose I had very few side effects, just a bit tired. However, my side effects have increased with almost every dose. I won't bother you with listing all of my side effects, my doctor at Mayo just keeps telling me, "Well, we don't normally see this with Pembro." Even with the side effects, it isn't that bad.
Good luck!
Allyson
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- April 12, 2016 at 4:00 pm
I have had 8 doses of Pembro almost ready to have dose number 9. I have a 3 and 4 year old so I completely understand your positiion. While the side effects are individualized and varied, after first dose I had very few side effects, just a bit tired. However, my side effects have increased with almost every dose. I won't bother you with listing all of my side effects, my doctor at Mayo just keeps telling me, "Well, we don't normally see this with Pembro." Even with the side effects, it isn't that bad.
Good luck!
Allyson
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- April 12, 2016 at 4:25 pm
Thank you Allyson, I have a 3 and 4 year old too. I'm so sorry you are having so many side effects, but it's comforting to know there are other Mama's out there doing it. Sending you good thoughts, if you ever want to talk feel free to message me. I have some good girlfriends, but it's different when you're the cancer patient friend.
~Allie
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- April 12, 2016 at 4:25 pm
Thank you Allyson, I have a 3 and 4 year old too. I'm so sorry you are having so many side effects, but it's comforting to know there are other Mama's out there doing it. Sending you good thoughts, if you ever want to talk feel free to message me. I have some good girlfriends, but it's different when you're the cancer patient friend.
~Allie
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- April 12, 2016 at 4:25 pm
Thank you Allyson, I have a 3 and 4 year old too. I'm so sorry you are having so many side effects, but it's comforting to know there are other Mama's out there doing it. Sending you good thoughts, if you ever want to talk feel free to message me. I have some good girlfriends, but it's different when you're the cancer patient friend.
~Allie
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- April 12, 2016 at 6:06 pm
Hi Allie,
I only started pembro two weeks ago but I have a 5 year old at home and had the same concerns. My oncologist told me I would feel absolutely nothing the first time and may start having some side effects after 3 or 4 infusions. So far so good for me. I was really tired the day of the infusion just from having a long day. Otherwise, maybe just a little more tired than usual but who knows bc what we do is tiring. I've continued with running and excercising but scaled back a bit.
I think I read on here to drink a lot of water and I made sure to do that. I also made sure I had lots of healthy snacks and groceries at home. I don't typically snack but the nurse administering the pembro suggesting eating small meals to help with nausea and digestion. Sounds silly but this has been an adjustment just bc I'm not used to it and I'm always worried about feeding my son and husband and eventually get around to it myself.
Good luck. I'd love to keep in touch and compare notes.
Caitlin
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- April 12, 2016 at 6:06 pm
Hi Allie,
I only started pembro two weeks ago but I have a 5 year old at home and had the same concerns. My oncologist told me I would feel absolutely nothing the first time and may start having some side effects after 3 or 4 infusions. So far so good for me. I was really tired the day of the infusion just from having a long day. Otherwise, maybe just a little more tired than usual but who knows bc what we do is tiring. I've continued with running and excercising but scaled back a bit.
I think I read on here to drink a lot of water and I made sure to do that. I also made sure I had lots of healthy snacks and groceries at home. I don't typically snack but the nurse administering the pembro suggesting eating small meals to help with nausea and digestion. Sounds silly but this has been an adjustment just bc I'm not used to it and I'm always worried about feeding my son and husband and eventually get around to it myself.
Good luck. I'd love to keep in touch and compare notes.
Caitlin
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- April 13, 2016 at 3:51 am
Hi Caitlin, thank you so much for your reply. I hate that we have to go through this, but it is nice to hear from other Moms. Last time I had melanoma it was before I had my kids. So glad to hear of minimal side effects, would love to keep in touch since is sounds like we're in the same boat.
~Allie
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- April 13, 2016 at 3:51 am
Hi Caitlin, thank you so much for your reply. I hate that we have to go through this, but it is nice to hear from other Moms. Last time I had melanoma it was before I had my kids. So glad to hear of minimal side effects, would love to keep in touch since is sounds like we're in the same boat.
~Allie
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- April 13, 2016 at 3:51 am
Hi Caitlin, thank you so much for your reply. I hate that we have to go through this, but it is nice to hear from other Moms. Last time I had melanoma it was before I had my kids. So glad to hear of minimal side effects, would love to keep in touch since is sounds like we're in the same boat.
~Allie
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- April 12, 2016 at 6:06 pm
Hi Allie,
I only started pembro two weeks ago but I have a 5 year old at home and had the same concerns. My oncologist told me I would feel absolutely nothing the first time and may start having some side effects after 3 or 4 infusions. So far so good for me. I was really tired the day of the infusion just from having a long day. Otherwise, maybe just a little more tired than usual but who knows bc what we do is tiring. I've continued with running and excercising but scaled back a bit.
I think I read on here to drink a lot of water and I made sure to do that. I also made sure I had lots of healthy snacks and groceries at home. I don't typically snack but the nurse administering the pembro suggesting eating small meals to help with nausea and digestion. Sounds silly but this has been an adjustment just bc I'm not used to it and I'm always worried about feeding my son and husband and eventually get around to it myself.
Good luck. I'd love to keep in touch and compare notes.
Caitlin
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- April 12, 2016 at 4:00 pm
I have had 8 doses of Pembro almost ready to have dose number 9. I have a 3 and 4 year old so I completely understand your positiion. While the side effects are individualized and varied, after first dose I had very few side effects, just a bit tired. However, my side effects have increased with almost every dose. I won't bother you with listing all of my side effects, my doctor at Mayo just keeps telling me, "Well, we don't normally see this with Pembro." Even with the side effects, it isn't that bad.
Good luck!
Allyson
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- April 12, 2016 at 10:44 pm
Hello!
As others have mentioned, there is a super wide range of potential side effects with pembro, but I can offer you our experience with Keytruda!
My husband's side effects have been incredibly mild. Right after treatment he feels very fatigued and typically rests and takes a nap. The next day he experiences joint and muscle pain, some light headaches, and a general sense of continued fatigue. These typically clear up within a week and get better as the days continue. He is usually back to work the day after treatment and has been known to golf 2-3 days after his infusion. 🙂 He has been getting infusions every three weeks since July 1, 2015 and if anything, his side effects have lessened over time – it seems that his body has acclimated to receiving pembro.
Keytruda saved my husband's life and I am so grateful that his side effects are so minimal. I'm hoping you have the same experience as well!
Best,
Katie
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- April 12, 2016 at 10:44 pm
Hello!
As others have mentioned, there is a super wide range of potential side effects with pembro, but I can offer you our experience with Keytruda!
My husband's side effects have been incredibly mild. Right after treatment he feels very fatigued and typically rests and takes a nap. The next day he experiences joint and muscle pain, some light headaches, and a general sense of continued fatigue. These typically clear up within a week and get better as the days continue. He is usually back to work the day after treatment and has been known to golf 2-3 days after his infusion. 🙂 He has been getting infusions every three weeks since July 1, 2015 and if anything, his side effects have lessened over time – it seems that his body has acclimated to receiving pembro.
Keytruda saved my husband's life and I am so grateful that his side effects are so minimal. I'm hoping you have the same experience as well!
Best,
Katie
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- April 12, 2016 at 10:44 pm
Hello!
As others have mentioned, there is a super wide range of potential side effects with pembro, but I can offer you our experience with Keytruda!
My husband's side effects have been incredibly mild. Right after treatment he feels very fatigued and typically rests and takes a nap. The next day he experiences joint and muscle pain, some light headaches, and a general sense of continued fatigue. These typically clear up within a week and get better as the days continue. He is usually back to work the day after treatment and has been known to golf 2-3 days after his infusion. 🙂 He has been getting infusions every three weeks since July 1, 2015 and if anything, his side effects have lessened over time – it seems that his body has acclimated to receiving pembro.
Keytruda saved my husband's life and I am so grateful that his side effects are so minimal. I'm hoping you have the same experience as well!
Best,
Katie
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- April 13, 2016 at 10:05 am
My father started Keytruda in January 2016, has had his 4th dose last Monday and so far NO side effects what so ever… He is 60 years old and feels great!
So please don t worry, I read that almost 80% of people don t experience any side effects caused by this drug….
Good luck!
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- April 13, 2016 at 10:05 am
My father started Keytruda in January 2016, has had his 4th dose last Monday and so far NO side effects what so ever… He is 60 years old and feels great!
So please don t worry, I read that almost 80% of people don t experience any side effects caused by this drug….
Good luck!
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- April 13, 2016 at 10:05 am
My father started Keytruda in January 2016, has had his 4th dose last Monday and so far NO side effects what so ever… He is 60 years old and feels great!
So please don t worry, I read that almost 80% of people don t experience any side effects caused by this drug….
Good luck!
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