What to Expect from Oncologist

Hey KSG,

While we all know that there's plenty to be nervous about, I don't think you need to add Yervoy to that list. For most people, the side effects are fairly mild. I had 16 doses of Yervoy (before it was approved), and other than crazy leg itching, I was fine. I know other people report some fatigue, but again, these are such mild side effects when one thinks about many traditional cancer treatments.

As for your oncologist, I remember you posted something earlier asking for recommendations. Myself and another person mentioned Dr. Gregory Daniels who's in San Diego (where I believe you live). He's great, as is the entire Moore Cancer Center where he practices. I personally think it's very important to feel comfortable with your oncologist. It's also, of course, important not to spend 3 hours commuting to LA every time you need to see said oncologist. It's a tough line to straddle. I think the first step in figuring out whether you're happy with your oncologist is to ask them a lot of questions. Are they willing to make time to answer them, and do you trust their answers? These people are really busy so if they don't volunteer to give us hours of their time, I don't think it's a problem. It is a problem, however, if, when asked, they can't make time to answer our questions. I will say one other thing. I briefly had an oncologist in New York City who simply made me so depressed that I had to change hospitals. He made it seem as though if I wasn't in a state of utter panic then I clearly wasn't aware of my situation and wasn't taking my health seriously. You really are trusting your life to these doctors, so you need to find one with whom you feel comfortable.

One other thing: it's a really good idea to post a profile on this site so that people understand exactly what you're going through, and can offer more specific advice.

Best of luck!

Josh 

Hey KSG,

While we all know that there's plenty to be nervous about, I don't think you need to add Yervoy to that list. For most people, the side effects are fairly mild. I had 16 doses of Yervoy (before it was approved), and other than crazy leg itching, I was fine. I know other people report some fatigue, but again, these are such mild side effects when one thinks about many traditional cancer treatments.

As for your oncologist, I remember you posted something earlier asking for recommendations. Myself and another person mentioned Dr. Gregory Daniels who's in San Diego (where I believe you live). He's great, as is the entire Moore Cancer Center where he practices. I personally think it's very important to feel comfortable with your oncologist. It's also, of course, important not to spend 3 hours commuting to LA every time you need to see said oncologist. It's a tough line to straddle. I think the first step in figuring out whether you're happy with your oncologist is to ask them a lot of questions. Are they willing to make time to answer them, and do you trust their answers? These people are really busy so if they don't volunteer to give us hours of their time, I don't think it's a problem. It is a problem, however, if, when asked, they can't make time to answer our questions. I will say one other thing. I briefly had an oncologist in New York City who simply made me so depressed that I had to change hospitals. He made it seem as though if I wasn't in a state of utter panic then I clearly wasn't aware of my situation and wasn't taking my health seriously. You really are trusting your life to these doctors, so you need to find one with whom you feel comfortable.

One other thing: it's a really good idea to post a profile on this site so that people understand exactly what you're going through, and can offer more specific advice.

Best of luck!

Josh 

Hey KSG,

While we all know that there's plenty to be nervous about, I don't think you need to add Yervoy to that list. For most people, the side effects are fairly mild. I had 16 doses of Yervoy (before it was approved), and other than crazy leg itching, I was fine. I know other people report some fatigue, but again, these are such mild side effects when one thinks about many traditional cancer treatments.

As for your oncologist, I remember you posted something earlier asking for recommendations. Myself and another person mentioned Dr. Gregory Daniels who's in San Diego (where I believe you live). He's great, as is the entire Moore Cancer Center where he practices. I personally think it's very important to feel comfortable with your oncologist. It's also, of course, important not to spend 3 hours commuting to LA every time you need to see said oncologist. It's a tough line to straddle. I think the first step in figuring out whether you're happy with your oncologist is to ask them a lot of questions. Are they willing to make time to answer them, and do you trust their answers? These people are really busy so if they don't volunteer to give us hours of their time, I don't think it's a problem. It is a problem, however, if, when asked, they can't make time to answer our questions. I will say one other thing. I briefly had an oncologist in New York City who simply made me so depressed that I had to change hospitals. He made it seem as though if I wasn't in a state of utter panic then I clearly wasn't aware of my situation and wasn't taking my health seriously. You really are trusting your life to these doctors, so you need to find one with whom you feel comfortable.

One other thing: it's a really good idea to post a profile on this site so that people understand exactly what you're going through, and can offer more specific advice.

Best of luck!

Josh 

I totally agree with Josh about Dr. Gregg Daniels & Moores Cancer Center.

I am a stage4 melanoma cancer patient & have had many oncologists on this journey.

By far, Dr. Daniels is the BEST…kind, caring, communicative, &  makes you feel important.

I highly recommend you contact Dr Daniels: [email protected] 858 822 6267

I totally agree with Josh about Dr. Gregg Daniels & Moores Cancer Center.

I am a stage4 melanoma cancer patient & have had many oncologists on this journey.

By far, Dr. Daniels is the BEST…kind, caring, communicative, &  makes you feel important.

I highly recommend you contact Dr Daniels: [email protected] 858 822 6267

I totally agree with Josh about Dr. Gregg Daniels & Moores Cancer Center.

I am a stage4 melanoma cancer patient & have had many oncologists on this journey.

By far, Dr. Daniels is the BEST…kind, caring, communicative, &  makes you feel important.

I highly recommend you contact Dr Daniels: [email protected] 858 822 6267

Hello,

Sorry you had to join all the warriors on this site.  I hope this drug works for you but there are many more to try if it doesn't and a few years ago there were practically none or none that really worked.

My husband has been on Yervoy in a clinical trial since Mar. 2011.  He got the initial 4 doses in 12 weeks and then gets another every 12 weeks since.  He had some itching and some fatigue which he still gets after every dose.  His eyebrows turned white and his beard and face lost much of its pigmentation.  But those side effects are mild since he was stage IV and recently he became  NED (no evidence of disease).  His oncologist gave us his cell phone number after the first infusion so if he had any side effects he could contact him even if he wasn't in the office and we also got the telephone number to talk to the Research RN since he was in a clinical trial but her number was only for office hours.  He received papers on possible side effects and what to do if he had them.

You might also want to do a search on this site for Yervoy (Ipilimumab) in the upper right hand corner and you will see many posts from patients who have taken this drug.

Infusions last 1 1/2 hours and then a 1 hour wait before you can leave after it is given.  Plus time to mix the drug and get you hooked up to an IV.  He usually feels pretty good and we go grab something to eat on our way home.  We have to drive 1 to 1 1/2 hours to get to the site where it is administered.

Hope this helps but you can also read his profile page for more information.  Please fill in your profile as it will help others.  If more questions pop into your head just ask as someone around here has probably been where you are at right now and they can help you.

Judy (loving wife of Gene)

Hello,

Sorry you had to join all the warriors on this site.  I hope this drug works for you but there are many more to try if it doesn't and a few years ago there were practically none or none that really worked.

My husband has been on Yervoy in a clinical trial since Mar. 2011.  He got the initial 4 doses in 12 weeks and then gets another every 12 weeks since.  He had some itching and some fatigue which he still gets after every dose.  His eyebrows turned white and his beard and face lost much of its pigmentation.  But those side effects are mild since he was stage IV and recently he became  NED (no evidence of disease).  His oncologist gave us his cell phone number after the first infusion so if he had any side effects he could contact him even if he wasn't in the office and we also got the telephone number to talk to the Research RN since he was in a clinical trial but her number was only for office hours.  He received papers on possible side effects and what to do if he had them.

You might also want to do a search on this site for Yervoy (Ipilimumab) in the upper right hand corner and you will see many posts from patients who have taken this drug.

Infusions last 1 1/2 hours and then a 1 hour wait before you can leave after it is given.  Plus time to mix the drug and get you hooked up to an IV.  He usually feels pretty good and we go grab something to eat on our way home.  We have to drive 1 to 1 1/2 hours to get to the site where it is administered.

Hope this helps but you can also read his profile page for more information.  Please fill in your profile as it will help others.  If more questions pop into your head just ask as someone around here has probably been where you are at right now and they can help you.

Judy (loving wife of Gene)

Hello,

Sorry you had to join all the warriors on this site.  I hope this drug works for you but there are many more to try if it doesn't and a few years ago there were practically none or none that really worked.

My husband has been on Yervoy in a clinical trial since Mar. 2011.  He got the initial 4 doses in 12 weeks and then gets another every 12 weeks since.  He had some itching and some fatigue which he still gets after every dose.  His eyebrows turned white and his beard and face lost much of its pigmentation.  But those side effects are mild since he was stage IV and recently he became  NED (no evidence of disease).  His oncologist gave us his cell phone number after the first infusion so if he had any side effects he could contact him even if he wasn't in the office and we also got the telephone number to talk to the Research RN since he was in a clinical trial but her number was only for office hours.  He received papers on possible side effects and what to do if he had them.

You might also want to do a search on this site for Yervoy (Ipilimumab) in the upper right hand corner and you will see many posts from patients who have taken this drug.

Infusions last 1 1/2 hours and then a 1 hour wait before you can leave after it is given.  Plus time to mix the drug and get you hooked up to an IV.  He usually feels pretty good and we go grab something to eat on our way home.  We have to drive 1 to 1 1/2 hours to get to the site where it is administered.

Hope this helps but you can also read his profile page for more information.  Please fill in your profile as it will help others.  If more questions pop into your head just ask as someone around here has probably been where you are at right now and they can help you.

Judy (loving wife of Gene)

I went on Yervoy 7 weeks ago, through three doses, in a similar arrangement to yours.  I also live almost exactly 100 miles from the cancer center  where my oncologist is.  The center, University of Michigan, provides round the clock phone contact with skilled personnel, not necessarily my oncologist personally, whom I am supposed to contact if I notice any symptoms, which were explained not only by the doctor verbally but in his own one page summary of the treatment and in the Bristol Squibb materials that came with the starter kit that the drug company wants all recipients of Yervoy to receive.  If you don't feel like you can attain enough info on your own or are not given the starter kit by your doc, just go to the BSM site and you can contact them for loads of info. 

My side effects so far have been mainly some fatigue and some mild itching, both of which I have reported.  I have also reported some diarrhea, which can be a sign of some of the worst of side effects, but the cases of which for me were just instances of something I ate.  That's what I figured, but I still think and the folks at U.of M. and BSM do too that reporting even minor stuff is better than not.  I have not been told to stick around at U. of M. after my infusions for an hour or any time as someone else mentioned on the site.  I have been having my wife do the driving home, but certainly feel that I could do it myself as need be.  The infusion itself so far has not been any problem at all.

One other thing I did that I felt was important.  I spoke to my primary heer in town about the outside chance that I might have need of emergency care.  He made sure that my chart for the hospital I go to had instructions to immediately contact myU. of M. oncologist if I came to emergency or was admitted and assured me that a transfer if needed by ambulance or even helicopter could be made very readily. U. of M. would prefer you be in the hospital there than locally if possible.   The local oncologist I initially went to is Yervoy side effect trained as is one of his colleagues, so he or she could also be sought out if something were needed immediately.  These are worst case scenarios, very unlikely to happen, but it made me feel more secure that something was in place if needed.  The literature scares you enough about the very unlikely major side effects of Yervoy that I certainly felt better safe than sorry. 

One other thing.  My oncologist told me that my only limitation on anything during treatment would be to stay within the environs of Ann Arbor during my treatment weeks and not to travel far afield.   

I went on Yervoy 7 weeks ago, through three doses, in a similar arrangement to yours.  I also live almost exactly 100 miles from the cancer center  where my oncologist is.  The center, University of Michigan, provides round the clock phone contact with skilled personnel, not necessarily my oncologist personally, whom I am supposed to contact if I notice any symptoms, which were explained not only by the doctor verbally but in his own one page summary of the treatment and in the Bristol Squibb materials that came with the starter kit that the drug company wants all recipients of Yervoy to receive.  If you don't feel like you can attain enough info on your own or are not given the starter kit by your doc, just go to the BSM site and you can contact them for loads of info. 

My side effects so far have been mainly some fatigue and some mild itching, both of which I have reported.  I have also reported some diarrhea, which can be a sign of some of the worst of side effects, but the cases of which for me were just instances of something I ate.  That's what I figured, but I still think and the folks at U.of M. and BSM do too that reporting even minor stuff is better than not.  I have not been told to stick around at U. of M. after my infusions for an hour or any time as someone else mentioned on the site.  I have been having my wife do the driving home, but certainly feel that I could do it myself as need be.  The infusion itself so far has not been any problem at all.

One other thing I did that I felt was important.  I spoke to my primary heer in town about the outside chance that I might have need of emergency care.  He made sure that my chart for the hospital I go to had instructions to immediately contact myU. of M. oncologist if I came to emergency or was admitted and assured me that a transfer if needed by ambulance or even helicopter could be made very readily. U. of M. would prefer you be in the hospital there than locally if possible.   The local oncologist I initially went to is Yervoy side effect trained as is one of his colleagues, so he or she could also be sought out if something were needed immediately.  These are worst case scenarios, very unlikely to happen, but it made me feel more secure that something was in place if needed.  The literature scares you enough about the very unlikely major side effects of Yervoy that I certainly felt better safe than sorry. 

One other thing.  My oncologist told me that my only limitation on anything during treatment would be to stay within the environs of Ann Arbor during my treatment weeks and not to travel far afield.   

I went on Yervoy 7 weeks ago, through three doses, in a similar arrangement to yours.  I also live almost exactly 100 miles from the cancer center  where my oncologist is.  The center, University of Michigan, provides round the clock phone contact with skilled personnel, not necessarily my oncologist personally, whom I am supposed to contact if I notice any symptoms, which were explained not only by the doctor verbally but in his own one page summary of the treatment and in the Bristol Squibb materials that came with the starter kit that the drug company wants all recipients of Yervoy to receive.  If you don't feel like you can attain enough info on your own or are not given the starter kit by your doc, just go to the BSM site and you can contact them for loads of info. 

My side effects so far have been mainly some fatigue and some mild itching, both of which I have reported.  I have also reported some diarrhea, which can be a sign of some of the worst of side effects, but the cases of which for me were just instances of something I ate.  That's what I figured, but I still think and the folks at U.of M. and BSM do too that reporting even minor stuff is better than not.  I have not been told to stick around at U. of M. after my infusions for an hour or any time as someone else mentioned on the site.  I have been having my wife do the driving home, but certainly feel that I could do it myself as need be.  The infusion itself so far has not been any problem at all.

One other thing I did that I felt was important.  I spoke to my primary heer in town about the outside chance that I might have need of emergency care.  He made sure that my chart for the hospital I go to had instructions to immediately contact myU. of M. oncologist if I came to emergency or was admitted and assured me that a transfer if needed by ambulance or even helicopter could be made very readily. U. of M. would prefer you be in the hospital there than locally if possible.   The local oncologist I initially went to is Yervoy side effect trained as is one of his colleagues, so he or she could also be sought out if something were needed immediately.  These are worst case scenarios, very unlikely to happen, but it made me feel more secure that something was in place if needed.  The literature scares you enough about the very unlikely major side effects of Yervoy that I certainly felt better safe than sorry. 

One other thing.  My oncologist told me that my only limitation on anything during treatment would be to stay within the environs of Ann Arbor during my treatment weeks and not to travel far afield.