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Valentine

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      Valentine
      Participant

        Colleen,

        Exercising in the pool also provides natural compression. It helps quite a bit actually.

        I also use a Flexitouch machine every night.

        So between the compression garment in the daytime, an hour in the pool every day, and the Flexitouch in the evening the lymphedema is pretty well controlled.

        Unfortunately, other health isses have kept me out of the pool and kept me from wearing the garment lately and I can tell I am "filling up" with lymphedema.

        Cheri

        Valentine
        Participant

          Colleen,

          Exercising in the pool also provides natural compression. It helps quite a bit actually.

          I also use a Flexitouch machine every night.

          So between the compression garment in the daytime, an hour in the pool every day, and the Flexitouch in the evening the lymphedema is pretty well controlled.

          Unfortunately, other health isses have kept me out of the pool and kept me from wearing the garment lately and I can tell I am "filling up" with lymphedema.

          Cheri

          Valentine
          Participant

            Colleen,

            Exercising in the pool also provides natural compression. It helps quite a bit actually.

            I also use a Flexitouch machine every night.

            So between the compression garment in the daytime, an hour in the pool every day, and the Flexitouch in the evening the lymphedema is pretty well controlled.

            Unfortunately, other health isses have kept me out of the pool and kept me from wearing the garment lately and I can tell I am "filling up" with lymphedema.

            Cheri

            Valentine
            Participant

              I am sorry to hear about your cousin. It is especially frustrating when you are misdiagnosed in the beginning.

              In May 2009 I showed a lump on the bottom of my foot to my primary care physician. She treated it as a wart, freezing it 3 times in the next several months. The last time she froze it, in August 2009, I told her it was painful to walk. She sent me to a podiatrist for plantar faciitis. He said the lump was not a wart, but he didn't know what it was. By January 2010, it was so painful to walk I could barely go from one room to another. I insisted that the lump had to come off. Even then the podiatrist didn't think it was necessary, but he did it because I insisted. The pathology came back as nodular melanoma. I then had more of the foot removed and a sentinel node biopsy, which came back microscopically positive. So a third surgery followed to remove the lymph nodes in my left groin. This left me with a diagnosis of stage 3b.

              My oncologist wasn't too excited about Interferon therapy. I did try one dose, but did not continue. The side effects were too extreme. If the doctor thought it was very important, I would have continued. Since he didn't think it was going to significantly improve my survival chances, I did not continue.

              For the first two years I saw the oncologist and dermatologist every 3 months, CT scans every 6 months, annual breast exams, annual eye exams, dental exam every 6 monhs, podiatrist every 3 months (I got a new one). When I got to the 2 year mark, I started seeing the oncologist and dermatologist every 6 months.

              Every time I find a lump I go to the dermatologist immediately. So far I have not had a recurrence. Sometimes they try to put me off, but I really don't care if they think I am a nut case. I want lumps looked at sooner rather than later and I am not afraid to be a little pushy about it. I would not have staged so high if they would have biopsied it in the first place, eight months earlier.

              I know you're looking for treatment options, but I don't have anything to offer in that regard. I am just being vigilant. It is just part of my life now, and I am grateful that I am alive.

              Best wishes to you and your cousin!

              Cheri

              Valentine
              Participant

                I am sorry to hear about your cousin. It is especially frustrating when you are misdiagnosed in the beginning.

                In May 2009 I showed a lump on the bottom of my foot to my primary care physician. She treated it as a wart, freezing it 3 times in the next several months. The last time she froze it, in August 2009, I told her it was painful to walk. She sent me to a podiatrist for plantar faciitis. He said the lump was not a wart, but he didn't know what it was. By January 2010, it was so painful to walk I could barely go from one room to another. I insisted that the lump had to come off. Even then the podiatrist didn't think it was necessary, but he did it because I insisted. The pathology came back as nodular melanoma. I then had more of the foot removed and a sentinel node biopsy, which came back microscopically positive. So a third surgery followed to remove the lymph nodes in my left groin. This left me with a diagnosis of stage 3b.

                My oncologist wasn't too excited about Interferon therapy. I did try one dose, but did not continue. The side effects were too extreme. If the doctor thought it was very important, I would have continued. Since he didn't think it was going to significantly improve my survival chances, I did not continue.

                For the first two years I saw the oncologist and dermatologist every 3 months, CT scans every 6 months, annual breast exams, annual eye exams, dental exam every 6 monhs, podiatrist every 3 months (I got a new one). When I got to the 2 year mark, I started seeing the oncologist and dermatologist every 6 months.

                Every time I find a lump I go to the dermatologist immediately. So far I have not had a recurrence. Sometimes they try to put me off, but I really don't care if they think I am a nut case. I want lumps looked at sooner rather than later and I am not afraid to be a little pushy about it. I would not have staged so high if they would have biopsied it in the first place, eight months earlier.

                I know you're looking for treatment options, but I don't have anything to offer in that regard. I am just being vigilant. It is just part of my life now, and I am grateful that I am alive.

                Best wishes to you and your cousin!

                Cheri

                Valentine
                Participant

                  I am sorry to hear about your cousin. It is especially frustrating when you are misdiagnosed in the beginning.

                  In May 2009 I showed a lump on the bottom of my foot to my primary care physician. She treated it as a wart, freezing it 3 times in the next several months. The last time she froze it, in August 2009, I told her it was painful to walk. She sent me to a podiatrist for plantar faciitis. He said the lump was not a wart, but he didn't know what it was. By January 2010, it was so painful to walk I could barely go from one room to another. I insisted that the lump had to come off. Even then the podiatrist didn't think it was necessary, but he did it because I insisted. The pathology came back as nodular melanoma. I then had more of the foot removed and a sentinel node biopsy, which came back microscopically positive. So a third surgery followed to remove the lymph nodes in my left groin. This left me with a diagnosis of stage 3b.

                  My oncologist wasn't too excited about Interferon therapy. I did try one dose, but did not continue. The side effects were too extreme. If the doctor thought it was very important, I would have continued. Since he didn't think it was going to significantly improve my survival chances, I did not continue.

                  For the first two years I saw the oncologist and dermatologist every 3 months, CT scans every 6 months, annual breast exams, annual eye exams, dental exam every 6 monhs, podiatrist every 3 months (I got a new one). When I got to the 2 year mark, I started seeing the oncologist and dermatologist every 6 months.

                  Every time I find a lump I go to the dermatologist immediately. So far I have not had a recurrence. Sometimes they try to put me off, but I really don't care if they think I am a nut case. I want lumps looked at sooner rather than later and I am not afraid to be a little pushy about it. I would not have staged so high if they would have biopsied it in the first place, eight months earlier.

                  I know you're looking for treatment options, but I don't have anything to offer in that regard. I am just being vigilant. It is just part of my life now, and I am grateful that I am alive.

                  Best wishes to you and your cousin!

                  Cheri

                  Valentine
                  Participant

                    Kelty,

                    Thanks for the input, but it really wasn't an insurance issue.

                    I did get into see the dermatologist, but she wanted a surgeon to biopsy it. She said there were 2 different options for a surgeon, and she would get me in for the soonest appointment. Unfortunately, the consult with the surgeon isn't until August 29. I talked to a lymphatic therapist who recommended that I not use the Flexitouch or even compression garments until I get the results of the biopsy. I am going to call the surgeon's office on Monday and let them know I am willing to come in on short notice for an earlier appointment if they have a cancellation.

                    It is hard to wait so long!

                    Cheri

                    Valentine
                    Participant

                      Kelty,

                      Thanks for the input, but it really wasn't an insurance issue.

                      I did get into see the dermatologist, but she wanted a surgeon to biopsy it. She said there were 2 different options for a surgeon, and she would get me in for the soonest appointment. Unfortunately, the consult with the surgeon isn't until August 29. I talked to a lymphatic therapist who recommended that I not use the Flexitouch or even compression garments until I get the results of the biopsy. I am going to call the surgeon's office on Monday and let them know I am willing to come in on short notice for an earlier appointment if they have a cancellation.

                      It is hard to wait so long!

                      Cheri

                      Valentine
                      Participant

                        Kelty,

                        Thanks for the input, but it really wasn't an insurance issue.

                        I did get into see the dermatologist, but she wanted a surgeon to biopsy it. She said there were 2 different options for a surgeon, and she would get me in for the soonest appointment. Unfortunately, the consult with the surgeon isn't until August 29. I talked to a lymphatic therapist who recommended that I not use the Flexitouch or even compression garments until I get the results of the biopsy. I am going to call the surgeon's office on Monday and let them know I am willing to come in on short notice for an earlier appointment if they have a cancellation.

                        It is hard to wait so long!

                        Cheri

                        Valentine
                        Participant

                          The oncology nurse got me in to see the dermatologist first thing this morning. I am so glad that I called there.

                          Thanks for your support, all of you who have responded. I just didn't know what to do.

                          Valentine
                          Participant

                            The oncology nurse got me in to see the dermatologist first thing this morning. I am so glad that I called there.

                            Thanks for your support, all of you who have responded. I just didn't know what to do.

                            Valentine
                            Participant

                              The oncology nurse got me in to see the dermatologist first thing this morning. I am so glad that I called there.

                              Thanks for your support, all of you who have responded. I just didn't know what to do.

                              Valentine
                              Participant

                                Julie,

                                No, this has nothing to do with insurance. It is how the local health care system works. All of the lymph nodes have already been removed from that area, so I don't think she would be biopsying a lymph node. It is a lump near the scar from the surgery that removed the lymph nodes.

                                I did talk to the oncologist's nurse this morning. She couldn't advise me about using the Flexitouch, but she was going to call the dermatolgist office. She was shocked that they wouldn't work me in sooner. So maybe she will get me a sooner appointment, still waiting for the call.

                                Thanks for your input.

                                Cheri

                                Valentine
                                Participant

                                  Julie,

                                  No, this has nothing to do with insurance. It is how the local health care system works. All of the lymph nodes have already been removed from that area, so I don't think she would be biopsying a lymph node. It is a lump near the scar from the surgery that removed the lymph nodes.

                                  I did talk to the oncologist's nurse this morning. She couldn't advise me about using the Flexitouch, but she was going to call the dermatolgist office. She was shocked that they wouldn't work me in sooner. So maybe she will get me a sooner appointment, still waiting for the call.

                                  Thanks for your input.

                                  Cheri

                                  Valentine
                                  Participant

                                    Julie,

                                    No, this has nothing to do with insurance. It is how the local health care system works. All of the lymph nodes have already been removed from that area, so I don't think she would be biopsying a lymph node. It is a lump near the scar from the surgery that removed the lymph nodes.

                                    I did talk to the oncologist's nurse this morning. She couldn't advise me about using the Flexitouch, but she was going to call the dermatolgist office. She was shocked that they wouldn't work me in sooner. So maybe she will get me a sooner appointment, still waiting for the call.

                                    Thanks for your input.

                                    Cheri

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