› Forums › General Melanoma Community › Ports and exercise? Yervoy side effects?
- This topic has 30 replies, 7 voices, and was last updated 10 years, 2 months ago by
JerryfromFauq.
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- February 5, 2014 at 8:56 pm
I had my first Yervoy treatment yesterday and I'm feeling pretty good! I'm in the high dose arm of the E1609 clinical trial. I had my port installed Monday, and other than pain around the incision, it feels fine.
If you received Yervoy infusions, when did your side effects start?
If you have a port, did you continue exercising? Maybe this is silly, but I'm a little afraid that I may damage the port. I am already limited to what I can do because during my radical neck dissection, my surgeon severed my auxillary nerve on my right side.
Thanks!
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- February 5, 2014 at 9:11 pm
My side affects started the night of the 2nd infusion but were very mild the whole time. Mine was every 3 weeks not the trial so I did not need a port so I dunno about that.
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- February 5, 2014 at 9:11 pm
My side affects started the night of the 2nd infusion but were very mild the whole time. Mine was every 3 weeks not the trial so I did not need a port so I dunno about that.
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- February 5, 2014 at 9:11 pm
My side affects started the night of the 2nd infusion but were very mild the whole time. Mine was every 3 weeks not the trial so I did not need a port so I dunno about that.
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- February 5, 2014 at 11:38 pm
Heidi,
I've had my port for about 4 or 5 months now. I exercise regularly (bike, run, swim, surf, etc…). I do lift occasionally but not heavy free weights. Don't think it would be a good idea to bounce a barbell off my chest doing bench press or something like that but otherwise I've had really no restriction to my exercise.
It's great that you got in the ipi arm. Can't remember if I've responded to one of your post or not but my experience and what others have written is that most don't have many if any side effects after the 1st infusion. Not uncommon to experience fatigue after the 2nd. A small percentage have some severe after the 2nd. A good friend of mine had some pretty severe liver toxicity after his second and some start getting the GI related issues after the 2nd. I had one incident of GI related incident that resulted in about 6 diarrhea episodes in a 24 hour period. It went away on it's own but my oncologist told me after the fact if I had more than 3 he wanted to know about it. After my 3rd infusion I developed some hypophysitis like conditions. Hypophysitis is a autoimmune response where your pituitary gland becomes swollen. I've seen it reported where it occurs in about 15% of patients on IPI. The dangerous thing about hypohysitis is the swelling can cause unreversible damage to the pituitary gland so you want to catch it early. For myself and Tina D we both started noticing a mild sinus like pain. The pain was constant but not bad. Eventually it started spreading to the whole brain, still mild and still constant. Eventually, about 2 weeks the pain got bad and quickly bad. The answer for this is prednisone and after taking it the pain went away within a day. Bottomline is if you start experiencing a constant mild pain for more than 3 days I would let someone know about it.
Best of luck in your treatment. Hope the above doesn't scare you. Definitely the majority tolerate IPI very well. With almost every side effect if you catch it early it's a non event. It's the ones that aren't caught early that seem to cause the most problems.
Brian
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- February 5, 2014 at 11:38 pm
Heidi,
I've had my port for about 4 or 5 months now. I exercise regularly (bike, run, swim, surf, etc…). I do lift occasionally but not heavy free weights. Don't think it would be a good idea to bounce a barbell off my chest doing bench press or something like that but otherwise I've had really no restriction to my exercise.
It's great that you got in the ipi arm. Can't remember if I've responded to one of your post or not but my experience and what others have written is that most don't have many if any side effects after the 1st infusion. Not uncommon to experience fatigue after the 2nd. A small percentage have some severe after the 2nd. A good friend of mine had some pretty severe liver toxicity after his second and some start getting the GI related issues after the 2nd. I had one incident of GI related incident that resulted in about 6 diarrhea episodes in a 24 hour period. It went away on it's own but my oncologist told me after the fact if I had more than 3 he wanted to know about it. After my 3rd infusion I developed some hypophysitis like conditions. Hypophysitis is a autoimmune response where your pituitary gland becomes swollen. I've seen it reported where it occurs in about 15% of patients on IPI. The dangerous thing about hypohysitis is the swelling can cause unreversible damage to the pituitary gland so you want to catch it early. For myself and Tina D we both started noticing a mild sinus like pain. The pain was constant but not bad. Eventually it started spreading to the whole brain, still mild and still constant. Eventually, about 2 weeks the pain got bad and quickly bad. The answer for this is prednisone and after taking it the pain went away within a day. Bottomline is if you start experiencing a constant mild pain for more than 3 days I would let someone know about it.
Best of luck in your treatment. Hope the above doesn't scare you. Definitely the majority tolerate IPI very well. With almost every side effect if you catch it early it's a non event. It's the ones that aren't caught early that seem to cause the most problems.
Brian
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- February 5, 2014 at 11:38 pm
Heidi,
I've had my port for about 4 or 5 months now. I exercise regularly (bike, run, swim, surf, etc…). I do lift occasionally but not heavy free weights. Don't think it would be a good idea to bounce a barbell off my chest doing bench press or something like that but otherwise I've had really no restriction to my exercise.
It's great that you got in the ipi arm. Can't remember if I've responded to one of your post or not but my experience and what others have written is that most don't have many if any side effects after the 1st infusion. Not uncommon to experience fatigue after the 2nd. A small percentage have some severe after the 2nd. A good friend of mine had some pretty severe liver toxicity after his second and some start getting the GI related issues after the 2nd. I had one incident of GI related incident that resulted in about 6 diarrhea episodes in a 24 hour period. It went away on it's own but my oncologist told me after the fact if I had more than 3 he wanted to know about it. After my 3rd infusion I developed some hypophysitis like conditions. Hypophysitis is a autoimmune response where your pituitary gland becomes swollen. I've seen it reported where it occurs in about 15% of patients on IPI. The dangerous thing about hypohysitis is the swelling can cause unreversible damage to the pituitary gland so you want to catch it early. For myself and Tina D we both started noticing a mild sinus like pain. The pain was constant but not bad. Eventually it started spreading to the whole brain, still mild and still constant. Eventually, about 2 weeks the pain got bad and quickly bad. The answer for this is prednisone and after taking it the pain went away within a day. Bottomline is if you start experiencing a constant mild pain for more than 3 days I would let someone know about it.
Best of luck in your treatment. Hope the above doesn't scare you. Definitely the majority tolerate IPI very well. With almost every side effect if you catch it early it's a non event. It's the ones that aren't caught early that seem to cause the most problems.
Brian
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- February 6, 2014 at 12:21 am
I was only able to have two infusions of Yervoy because my Pituitary Gland decided not to produce Cortisol. I was put on hydrocortisone and had to stop Yervoy. I was so disappointed. Luckily, my pituitary gland went back to normal and I no longer need to take hydrocortisone.
I hope all goes well for you! I will start IL2 on Monday.
Terrie
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- February 6, 2014 at 12:21 am
I was only able to have two infusions of Yervoy because my Pituitary Gland decided not to produce Cortisol. I was put on hydrocortisone and had to stop Yervoy. I was so disappointed. Luckily, my pituitary gland went back to normal and I no longer need to take hydrocortisone.
I hope all goes well for you! I will start IL2 on Monday.
Terrie
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- February 6, 2014 at 12:21 am
I was only able to have two infusions of Yervoy because my Pituitary Gland decided not to produce Cortisol. I was put on hydrocortisone and had to stop Yervoy. I was so disappointed. Luckily, my pituitary gland went back to normal and I no longer need to take hydrocortisone.
I hope all goes well for you! I will start IL2 on Monday.
Terrie
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- February 6, 2014 at 2:55 am
How common is it for a clinical trial to need installation of a port? Is it becaue they're drawing so much blood? Do many trials required this or only a few? This is not a detail about trials I'd heard about before. I can ask my oncologist about this when I see him next week to probably talk about IPI reinduction vs. clinical trials. But… you've got me wondering now.
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- February 6, 2014 at 2:55 am
How common is it for a clinical trial to need installation of a port? Is it becaue they're drawing so much blood? Do many trials required this or only a few? This is not a detail about trials I'd heard about before. I can ask my oncologist about this when I see him next week to probably talk about IPI reinduction vs. clinical trials. But… you've got me wondering now.
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- February 6, 2014 at 4:29 am
A port is not as much for drawing blood as it is for getting medication administered extremely close to the heart, so that the Meds can be immediately distrubeted throughout ones system in the most even and direct manner posible. I
have not seen any trials that I noticed listing this as necessary. I agree with Brian, I wouldn't want to bounce the weight bar off my port locatiopn, but in the 7 years I've had my port in, it has not restricted my activities. (On;y wrestle with my Grandkids now. Been many years since I was in a wrestling matach with a grown up. -
- February 6, 2014 at 4:29 am
A port is not as much for drawing blood as it is for getting medication administered extremely close to the heart, so that the Meds can be immediately distrubeted throughout ones system in the most even and direct manner posible. I
have not seen any trials that I noticed listing this as necessary. I agree with Brian, I wouldn't want to bounce the weight bar off my port locatiopn, but in the 7 years I've had my port in, it has not restricted my activities. (On;y wrestle with my Grandkids now. Been many years since I was in a wrestling matach with a grown up. -
- February 6, 2014 at 4:29 am
A port is not as much for drawing blood as it is for getting medication administered extremely close to the heart, so that the Meds can be immediately distrubeted throughout ones system in the most even and direct manner posible. I
have not seen any trials that I noticed listing this as necessary. I agree with Brian, I wouldn't want to bounce the weight bar off my port locatiopn, but in the 7 years I've had my port in, it has not restricted my activities. (On;y wrestle with my Grandkids now. Been many years since I was in a wrestling matach with a grown up. -
- February 6, 2014 at 4:35 am
My husband is in the 10 mg arm. He started with a mild rash around day 10after first infusion. Anti histamines and lotion can control it; being too warm makes it worse. It is really not too bad and it seems. To be lessening . Around day 9 after the second infusion he started with abdominal cramps in the am. No diarrhea. Seems like some foods make it worse. He has taken pepto bismal and Imodium occasionally and it helps. Infusion3 next week.,we went skiing yesterday and he did great . He is exercising a lot. My friend who had a port due to breast cancer went skiing with me while she was having chemo too! Good luck Heidi.
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- February 6, 2014 at 4:35 am
My husband is in the 10 mg arm. He started with a mild rash around day 10after first infusion. Anti histamines and lotion can control it; being too warm makes it worse. It is really not too bad and it seems. To be lessening . Around day 9 after the second infusion he started with abdominal cramps in the am. No diarrhea. Seems like some foods make it worse. He has taken pepto bismal and Imodium occasionally and it helps. Infusion3 next week.,we went skiing yesterday and he did great . He is exercising a lot. My friend who had a port due to breast cancer went skiing with me while she was having chemo too! Good luck Heidi.
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- February 6, 2014 at 4:35 am
My husband is in the 10 mg arm. He started with a mild rash around day 10after first infusion. Anti histamines and lotion can control it; being too warm makes it worse. It is really not too bad and it seems. To be lessening . Around day 9 after the second infusion he started with abdominal cramps in the am. No diarrhea. Seems like some foods make it worse. He has taken pepto bismal and Imodium occasionally and it helps. Infusion3 next week.,we went skiing yesterday and he did great . He is exercising a lot. My friend who had a port due to breast cancer went skiing with me while she was having chemo too! Good luck Heidi.
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- February 6, 2014 at 12:45 pm
Kyle,
I was very reluctant to get a port but I'm glad I have it now. In my trial I basically get an infusion every two weeks for a little over two years. For IVs I'm limited to one arm and over the course of the last couple years there's been a lot of scar build up in that arm and it wasn't a very good arm for IVs to start with. It just wasn't practical for me to keep trying to get IVs when it was taking multiple sticks and even when they finally got the IV in they were having difficulty drawing blood from it. I think to port or not to port is mostly a patient decision. Like Jerry says I think there are some advantages to a port due to the dispersion of the drug. May also be less local iritation at the site of a port than an IV for drugs that cause irritation but I don't know that for sure. For the most part the patient has to ask themselves, "Do I want to get stuck with a needle 100 times (or whatever the number is) over the next few years or would I rather have a port put in?"
Brian
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- February 6, 2014 at 12:45 pm
Kyle,
I was very reluctant to get a port but I'm glad I have it now. In my trial I basically get an infusion every two weeks for a little over two years. For IVs I'm limited to one arm and over the course of the last couple years there's been a lot of scar build up in that arm and it wasn't a very good arm for IVs to start with. It just wasn't practical for me to keep trying to get IVs when it was taking multiple sticks and even when they finally got the IV in they were having difficulty drawing blood from it. I think to port or not to port is mostly a patient decision. Like Jerry says I think there are some advantages to a port due to the dispersion of the drug. May also be less local iritation at the site of a port than an IV for drugs that cause irritation but I don't know that for sure. For the most part the patient has to ask themselves, "Do I want to get stuck with a needle 100 times (or whatever the number is) over the next few years or would I rather have a port put in?"
Brian
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- February 7, 2014 at 1:23 am
Thank you all so much for the info! I decided to get the port because I am a very difficult "stick".. I have been told by several nurses that I am the hardest stick they've ever seen in their career! The port worked great this week when I had to give so many blood samples and to receive the infusion. There have been times when I have been suck 4-5 times at a single appointment. This made it a breeze!
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- February 7, 2014 at 1:23 am
Thank you all so much for the info! I decided to get the port because I am a very difficult "stick".. I have been told by several nurses that I am the hardest stick they've ever seen in their career! The port worked great this week when I had to give so many blood samples and to receive the infusion. There have been times when I have been suck 4-5 times at a single appointment. This made it a breeze!
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- February 7, 2014 at 1:23 am
Thank you all so much for the info! I decided to get the port because I am a very difficult "stick".. I have been told by several nurses that I am the hardest stick they've ever seen in their career! The port worked great this week when I had to give so many blood samples and to receive the infusion. There have been times when I have been suck 4-5 times at a single appointment. This made it a breeze!
-
- February 6, 2014 at 12:45 pm
Kyle,
I was very reluctant to get a port but I'm glad I have it now. In my trial I basically get an infusion every two weeks for a little over two years. For IVs I'm limited to one arm and over the course of the last couple years there's been a lot of scar build up in that arm and it wasn't a very good arm for IVs to start with. It just wasn't practical for me to keep trying to get IVs when it was taking multiple sticks and even when they finally got the IV in they were having difficulty drawing blood from it. I think to port or not to port is mostly a patient decision. Like Jerry says I think there are some advantages to a port due to the dispersion of the drug. May also be less local iritation at the site of a port than an IV for drugs that cause irritation but I don't know that for sure. For the most part the patient has to ask themselves, "Do I want to get stuck with a needle 100 times (or whatever the number is) over the next few years or would I rather have a port put in?"
Brian
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- February 6, 2014 at 2:55 am
How common is it for a clinical trial to need installation of a port? Is it becaue they're drawing so much blood? Do many trials required this or only a few? This is not a detail about trials I'd heard about before. I can ask my oncologist about this when I see him next week to probably talk about IPI reinduction vs. clinical trials. But… you've got me wondering now.
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- February 7, 2014 at 10:26 am
Some places will even wipe the skin over the port with Lidacaine a few minutes before inserting the needle. This pretty much eliminates the sharp quick sting from the needle going thru the skin.
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- February 7, 2014 at 10:26 am
Some places will even wipe the skin over the port with Lidacaine a few minutes before inserting the needle. This pretty much eliminates the sharp quick sting from the needle going thru the skin.
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- February 7, 2014 at 10:26 am
Some places will even wipe the skin over the port with Lidacaine a few minutes before inserting the needle. This pretty much eliminates the sharp quick sting from the needle going thru the skin.
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