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kristylee92

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      kristylee92
      Participant
        The scarring on the lungs is not unusual, you could have been sick at some point in your life and not realized your lungs were affected. Your oncologist will keep an eye on the scars to make sure there is no growth. Great news on the negative PET scan! You will probably continue to have scans every 3 months to watch for recurrence. Staying healthy and a positive outlook will help you through the coming treatments. Ask questions and make informed decisions based on your wants. It helps to have someone with you to listen in case you miss an important detail. Best of luck to you!

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        kristylee92
        Participant
          The scarring on the lungs is not unusual, you could have been sick at some point in your life and not realized your lungs were affected. Your oncologist will keep an eye on the scars to make sure there is no growth. Great news on the negative PET scan! You will probably continue to have scans every 3 months to watch for recurrence. Staying healthy and a positive outlook will help you through the coming treatments. Ask questions and make informed decisions based on your wants. It helps to have someone with you to listen in case you miss an important detail. Best of luck to you!

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          kristylee92
          Participant
            I was one of the primary caregivers for my father and since I’m a nurse my family thrust me into the job of going to all his doctor appointments. I wanted to scream, cry, and not get out of bed some days because of overwhelming stress. The hardest part for me was being the strong one for everyone. My father and the rest of my family were in denial the last 6 months and refused to hear what the doctors had to say. All they heard is that they would continue treatments until the end. I didn’t have the heart to squash my father’s hope so I felt it was better not to tell him. When he did realize he was not going to recover he suddenly became scared to be alone because he was afraid of dying. I would break down and cry in the car, shower, or at work, whenever he wasn’t around me. I finally decided that I needed to see a counselor due to my insomnia and I could no longer focus on anything. I was diagnosed with situational depression. I learned that it was ok for me to have those emotions. I know it’s hard, but try to enjoy the good days he has. He appreciates what you are doing for him more than you will ever know. I’ve found that talking about it is the best therapy for me. Regardless of how overwhelmed you may feel, you will never regret taking care of him and it will make your bond stronger. Keep your hopes up, my aunt was diagnosed with Melanoma 8 yrs ago and she is doing well. She has had 5 surgeries to the same area because of recurrence but has continued to follow up with her physician which allows her to catch it early. I will keep you and your family in my prayers.

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            kristylee92
            Participant
              I was one of the primary caregivers for my father and since I’m a nurse my family thrust me into the job of going to all his doctor appointments. I wanted to scream, cry, and not get out of bed some days because of overwhelming stress. The hardest part for me was being the strong one for everyone. My father and the rest of my family were in denial the last 6 months and refused to hear what the doctors had to say. All they heard is that they would continue treatments until the end. I didn’t have the heart to squash my father’s hope so I felt it was better not to tell him. When he did realize he was not going to recover he suddenly became scared to be alone because he was afraid of dying. I would break down and cry in the car, shower, or at work, whenever he wasn’t around me. I finally decided that I needed to see a counselor due to my insomnia and I could no longer focus on anything. I was diagnosed with situational depression. I learned that it was ok for me to have those emotions. I know it’s hard, but try to enjoy the good days he has. He appreciates what you are doing for him more than you will ever know. I’ve found that talking about it is the best therapy for me. Regardless of how overwhelmed you may feel, you will never regret taking care of him and it will make your bond stronger. Keep your hopes up, my aunt was diagnosed with Melanoma 8 yrs ago and she is doing well. She has had 5 surgeries to the same area because of recurrence but has continued to follow up with her physician which allows her to catch it early. I will keep you and your family in my prayers.

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              kristylee92
              Participant
                I wish you the best of luck with your IL2 treatments. I know you will make it through it. My father completed 2 rounds of it in June & July of this year and he got through it with no complications. He coped with the side effects by sleeping as much as possible. I’ll keep your family in my prayers.

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                kristylee92
                Participant
                  I wish you the best of luck with your IL2 treatments. I know you will make it through it. My father completed 2 rounds of it in June & July of this year and he got through it with no complications. He coped with the side effects by sleeping as much as possible. I’ll keep your family in my prayers.

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                  kristylee92
                  Participant
                    My best advice is to stay on top of all your appointments and either take someone with you or record your appointments so that you do not miss out on any information. Gather all treatment information including duration and side effects so that you can make an informed decision. My father was offered IL2 treatment for a course of 3 rounds, he decided to do more conventional treatment first such as Interferon, surgery, and radiation. He also tried other therapies. He finally decided to try IL2 and completed 2 rounds but his body was too depleted to fight back by that time. You are young and healthy, fight this aggressively. Don’t be afraid to try some of the new drugs, they have had good results with a small percentage of people, you may fall into that percentage! Don’t forget that you are your own best advocate, you have rights as a patient and know your body better than anyone else.

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                    kristylee92
                    Participant
                      My best advice is to stay on top of all your appointments and either take someone with you or record your appointments so that you do not miss out on any information. Gather all treatment information including duration and side effects so that you can make an informed decision. My father was offered IL2 treatment for a course of 3 rounds, he decided to do more conventional treatment first such as Interferon, surgery, and radiation. He also tried other therapies. He finally decided to try IL2 and completed 2 rounds but his body was too depleted to fight back by that time. You are young and healthy, fight this aggressively. Don’t be afraid to try some of the new drugs, they have had good results with a small percentage of people, you may fall into that percentage! Don’t forget that you are your own best advocate, you have rights as a patient and know your body better than anyone else.

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                      kristylee92
                      Participant
                        I know you have a difficult decision to make, but I’m glad your oncologist made you aware of the side effects. My father had 5 extensive radiation treatments to the left side of his neck after surgical removal of 27 lymph nodes. He ended up having the lymph nodes also removed from the right side and received 25 lighter radiation treatments to that area. The radiation left his neck and collarbone area as hard as concrete which made future surgeries impossible. The radiation killed the cancer in those areas, but it returned behind the area that was treated and when it was unable to be surgically removed it metastasized to his lungs and esophagus. Extensive physical therapy was performed to try to keep the radiated areas from becoming so hard, but it was unsuccessful. I don’t want to alarm you, only to make you aware of side effects that we were not advised of. My father Starr that had he been aware of the damage radiation caused him, including months of pain from the internal burning, he would have declined the treatment. This is only our personal experience and we were told that the head/neck area is more fragile. I only ask that you gather all the information you can for your treatment options so that you can make the best decision for yourself.

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                        kristylee92
                        Participant
                          I know you have a difficult decision to make, but I’m glad your oncologist made you aware of the side effects. My father had 5 extensive radiation treatments to the left side of his neck after surgical removal of 27 lymph nodes. He ended up having the lymph nodes also removed from the right side and received 25 lighter radiation treatments to that area. The radiation left his neck and collarbone area as hard as concrete which made future surgeries impossible. The radiation killed the cancer in those areas, but it returned behind the area that was treated and when it was unable to be surgically removed it metastasized to his lungs and esophagus. Extensive physical therapy was performed to try to keep the radiated areas from becoming so hard, but it was unsuccessful. I don’t want to alarm you, only to make you aware of side effects that we were not advised of. My father Starr that had he been aware of the damage radiation caused him, including months of pain from the internal burning, he would have declined the treatment. This is only our personal experience and we were told that the head/neck area is more fragile. I only ask that you gather all the information you can for your treatment options so that you can make the best decision for yourself.

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