MRF-Logo2019-Horizontal-RGB
What would you do?
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

What would you do?

› Forums › General Melanoma Community › What would you do?

  • Post
    • August 30, 2014 at 3:51 am
    delora
    Participant

      Hi All,

      I am currently Stage IV in a clinical trial with Ippy and a clinical trial drug.  I love my Dr.  She is the absolute best.  However, the nurse in charge of my clinial trial is a disaster.  She has made some major mistakes, put in for incorrect blood tests, delayed my treatment on two occasions, sent me to the wrong Dr for my week off treatment bloodwork, and a few other things.

      For my last two appointments, she has stayed in the room.  My "feeling" is that she is worried I will tell the Dr.  She apologizes over and over every time the Dr leaves the room.  At first is was no big deal, I just figured we all make mistakes, but too many apologies makes me feel really uncomfortable.  I am unsure of what to do.  I want the focus to be on treatment, not on complaints.  However, I am really uncomfortable with her and, honestly, I am very stressed when she stays in the room.

       

      I just don't want to say something that could potentially upset my Dr or her.  I think the trial only lasts six more weeks.  Part of me just thinks I should ride it out.  

      I know this isn't the typical stuff we talk about on here.  I just don't know what to do.  I don't usually have experiences like this.

      Any thoughts or similar experiences?  From my understanding, she is the only person who works with folks in the clinical trials.  

      Delora

    Viewing 5 reply threads
    • Replies
        • August 30, 2014 at 4:57 am
        Nal64
        Participant

          We had a similar experience while my husband was in the hospital after resection. They tried to double dose OxyContin twice and put him on an unordered morphine pump which was removed a few hours later. Luckly we asked what he was getting because everyone seemed to be coming in with pills at all hours and the nursing/ interns/residents/ nurse assistants were constantly changing.  We got out of there as fast as they would allow! When our dr. Didn't follow up with us the week following surgery I sent an email detailing what went on in the hospital and our disappointment in his lack of communication. 

          Good news: our relationship is much stronger then before. He answers all emails within 24 hours and advocates on our behalf to the insurance company. He asked to share the email with the nursing staff (I did name some people specifically, but not many …..and I feel guilty for naming them)  but the doc reminded me that this is a teaching hospital and staff cannot get better if they don't know where to improve.  There were several checklists in the computer, scans of his bracelet and standard paper charts but things still got missed.

          Tell your doctor your concerns, you should never have to feel uncomfortable in this journey! We have to deal with enough stress as it is! You don't have to tell him everything, but maybe send an email telling him you would feel more comfortable meeting one on one to discuss your case, then he would be the one writing the orders instead of the nurse.

          Good luck!

          -N

            • August 30, 2014 at 11:49 pm
            Brendan
            Participant

              Hi.

              I am sorry to hear about your situation. However, there is nothing more important than your health and you are in charge.  I agree with Nal.  If you are that uncomfortable then you need to tell your doctor.  The e-mail is a great iidea, or write down all your comcerns so that you are heard in case the conversation gets off topic.

              You are in charge, and the doctors and nurses are here to help you.

              good luck.

              brendan

              • August 30, 2014 at 11:49 pm
              Brendan
              Participant

                Hi.

                I am sorry to hear about your situation. However, there is nothing more important than your health and you are in charge.  I agree with Nal.  If you are that uncomfortable then you need to tell your doctor.  The e-mail is a great iidea, or write down all your comcerns so that you are heard in case the conversation gets off topic.

                You are in charge, and the doctors and nurses are here to help you.

                good luck.

                brendan

                • August 30, 2014 at 11:49 pm
                Brendan
                Participant

                  Hi.

                  I am sorry to hear about your situation. However, there is nothing more important than your health and you are in charge.  I agree with Nal.  If you are that uncomfortable then you need to tell your doctor.  The e-mail is a great iidea, or write down all your comcerns so that you are heard in case the conversation gets off topic.

                  You are in charge, and the doctors and nurses are here to help you.

                  good luck.

                  brendan

                  • August 30, 2014 at 11:49 pm
                  Brendan
                  Participant

                    Hi.

                    I am sorry to hear about your situation. However, there is nothing more important than your health and you are in charge.  I agree with Nal.  If you are that uncomfortable then you need to tell your doctor.  The e-mail is a great iidea, or write down all your comcerns so that you are heard in case the conversation gets off topic.

                    You are in charge, and the doctors and nurses are here to help you.

                    good luck.

                    brendan

                    • August 30, 2014 at 11:49 pm
                    Brendan
                    Participant

                      Hi.

                      I am sorry to hear about your situation. However, there is nothing more important than your health and you are in charge.  I agree with Nal.  If you are that uncomfortable then you need to tell your doctor.  The e-mail is a great iidea, or write down all your comcerns so that you are heard in case the conversation gets off topic.

                      You are in charge, and the doctors and nurses are here to help you.

                      good luck.

                      brendan

                      • August 30, 2014 at 11:49 pm
                      Brendan
                      Participant

                        Hi.

                        I am sorry to hear about your situation. However, there is nothing more important than your health and you are in charge.  I agree with Nal.  If you are that uncomfortable then you need to tell your doctor.  The e-mail is a great iidea, or write down all your comcerns so that you are heard in case the conversation gets off topic.

                        You are in charge, and the doctors and nurses are here to help you.

                        good luck.

                        brendan

                      • August 30, 2014 at 4:57 am
                      Nal64
                      Participant

                        We had a similar experience while my husband was in the hospital after resection. They tried to double dose OxyContin twice and put him on an unordered morphine pump which was removed a few hours later. Luckly we asked what he was getting because everyone seemed to be coming in with pills at all hours and the nursing/ interns/residents/ nurse assistants were constantly changing.  We got out of there as fast as they would allow! When our dr. Didn't follow up with us the week following surgery I sent an email detailing what went on in the hospital and our disappointment in his lack of communication. 

                        Good news: our relationship is much stronger then before. He answers all emails within 24 hours and advocates on our behalf to the insurance company. He asked to share the email with the nursing staff (I did name some people specifically, but not many …..and I feel guilty for naming them)  but the doc reminded me that this is a teaching hospital and staff cannot get better if they don't know where to improve.  There were several checklists in the computer, scans of his bracelet and standard paper charts but things still got missed.

                        Tell your doctor your concerns, you should never have to feel uncomfortable in this journey! We have to deal with enough stress as it is! You don't have to tell him everything, but maybe send an email telling him you would feel more comfortable meeting one on one to discuss your case, then he would be the one writing the orders instead of the nurse.

                        Good luck!

                        -N

                        • August 30, 2014 at 4:57 am
                        Nal64
                        Participant

                          We had a similar experience while my husband was in the hospital after resection. They tried to double dose OxyContin twice and put him on an unordered morphine pump which was removed a few hours later. Luckly we asked what he was getting because everyone seemed to be coming in with pills at all hours and the nursing/ interns/residents/ nurse assistants were constantly changing.  We got out of there as fast as they would allow! When our dr. Didn't follow up with us the week following surgery I sent an email detailing what went on in the hospital and our disappointment in his lack of communication. 

                          Good news: our relationship is much stronger then before. He answers all emails within 24 hours and advocates on our behalf to the insurance company. He asked to share the email with the nursing staff (I did name some people specifically, but not many …..and I feel guilty for naming them)  but the doc reminded me that this is a teaching hospital and staff cannot get better if they don't know where to improve.  There were several checklists in the computer, scans of his bracelet and standard paper charts but things still got missed.

                          Tell your doctor your concerns, you should never have to feel uncomfortable in this journey! We have to deal with enough stress as it is! You don't have to tell him everything, but maybe send an email telling him you would feel more comfortable meeting one on one to discuss your case, then he would be the one writing the orders instead of the nurse.

                          Good luck!

                          -N

                          • August 31, 2014 at 4:08 pm
                          BrianP
                          Participant

                            Hey Delora,

                            Sorry you are having this type of experience.  It's really unfortunate.  Lord knows we have enough stress in our life's without this unnecessary kind.  With 6 more weeks if it were me I might just wait it out.  You seem like the type of person that would really be uncomfortable around this person for the rest of the trial if you did lodge a formal complaint.  At the end of the trial I would write a letter documenting your experiences and give it to your doctor.  I think she needs to know and would want to know about your experience with this nurse.  I will let you know I don't think it's unusual for the nurse to remain in the room during the visit.  I've had some that do and some that don't.  Probably just depends on the work relationship of the doctor and nurse and the workload that particular day.

                            BTW, how is your trial going?

                            Best of luck to you.

                            Brian

                            • August 31, 2014 at 4:08 pm
                            BrianP
                            Participant

                              Hey Delora,

                              Sorry you are having this type of experience.  It's really unfortunate.  Lord knows we have enough stress in our life's without this unnecessary kind.  With 6 more weeks if it were me I might just wait it out.  You seem like the type of person that would really be uncomfortable around this person for the rest of the trial if you did lodge a formal complaint.  At the end of the trial I would write a letter documenting your experiences and give it to your doctor.  I think she needs to know and would want to know about your experience with this nurse.  I will let you know I don't think it's unusual for the nurse to remain in the room during the visit.  I've had some that do and some that don't.  Probably just depends on the work relationship of the doctor and nurse and the workload that particular day.

                              BTW, how is your trial going?

                              Best of luck to you.

                              Brian

                              • August 31, 2014 at 4:08 pm
                              BrianP
                              Participant

                                Hey Delora,

                                Sorry you are having this type of experience.  It's really unfortunate.  Lord knows we have enough stress in our life's without this unnecessary kind.  With 6 more weeks if it were me I might just wait it out.  You seem like the type of person that would really be uncomfortable around this person for the rest of the trial if you did lodge a formal complaint.  At the end of the trial I would write a letter documenting your experiences and give it to your doctor.  I think she needs to know and would want to know about your experience with this nurse.  I will let you know I don't think it's unusual for the nurse to remain in the room during the visit.  I've had some that do and some that don't.  Probably just depends on the work relationship of the doctor and nurse and the workload that particular day.

                                BTW, how is your trial going?

                                Best of luck to you.

                                Brian

                            Viewing 5 reply threads
                            • You must be logged in to reply to this topic.
                            About the MRF Patient Forum

                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                            Popular Topics