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Father diagnosed with stage IV melanoma of small intestine.
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Father diagnosed with stage IV melanoma of small intestine.

› Forums › General Melanoma Community › Father diagnosed with stage IV melanoma of small intestine.

  • Post
    • July 23, 2014 at 1:56 am
    lovelife15
    Participant
      On June 13, 2014 my father was diagnosed with stage IV melanoma of the small intestine.
       
      A few days earlier my father told his heart doctor that he was feeling fatigued for a couple months now which then they decided to do blood work. His hemoglobin game back at 6.5.
       
      After the blood work came back we immediately went to the ER for a blood transfusion. Due to my fathers heart condition they could only give him so much blood. After the transfusion his hemoglobin was at 8.6. They immediately started him on ferrous sulfate (iron) which naturally raised his hemoglobin to 10.3 and his holding steady. 
       
      Once the pet scan and cat scan came back, it showed a couple mets on his lung, heart wall, chest muscle, groin and thigh muscle as well as the three tumors in his small intestine. The doctor at Toledo said we needed to test for BRAF and start treatment right away. Why wouldn't they remove the ones in the small intestine?
       
      We immediately knew that we wanted to see the melanoma specialist up at University of Michigan and started the intake process. 
       
      Since University of Michigan couldn't get us in till mid July, we pushed the Toledo doctor/oncologist to start my dad on something. Two weeks after he was diagnosed he started Yervoy. We refused to wait any longer. The Toledo oncologist has consulted the U of M specialist with every decision they have made for my dad because she was so nervous what the yervoy could do with his GI problems.
       
      Our appointment with U of M was supposed to be July 15th but the specialist called us and cancelled it. Said they didn't feel comfortable transferring his medical care during treatment. Everyone wants us to go up to U of M but I don't know why there is a problem with transferring treatment? 
       
      He just had his second treatment and has had no side effects besides fatigue and we pray it stays that way. He says he feels nothing is wrong. Hemoglobin is steady above 10, no pain and his appetite is great.
       
      The doctors say they are extremely confident in Yervoy. And that they want my dad to finish the Yervoy treatments at Toledo because it's exactly what they'd be doing at U of M. Also that they've been working together on his treatment. U of M said after the fourth treatment they will do pet scans and cat scans to determine how the Yervoy worked. If it didn't work they would put my dad in the trial coming up at the end of his treatment.
       
      Is it common not to transfer during treatment? Should we look for another specialist? It seems as though the Toledo oncologist and the U of M specialist are working side by side. When we speak with them separately they say the same thing.
       
      Am I overreacting? I feel as though I need to calm down but this is my dad and i want the best care for him.
       
      Kind words of encouragement are appreciated as this is really hurting us.
       
      Thank you
      Kiley
       
    Viewing 8 reply threads
    • Replies
        • July 24, 2014 at 3:14 am
        King
        Participant

          Hi Kiley,

           I think you are fortunate that the Toledo oncologist and the U of M specialist are working together, they agree on the plan of treatment and are both telling you the same thing.  And there is a plan in place if and when your father completes his 4 Yervoy treatments.

          I am hoping a tumor is being tested for BRAF.  They wouldn't remove the 3 tumors in the small intestine since this would have delayed starting systemic treatment which is necessary because of the multiple areas of metastasis.  Recovery from an intestinal surgery is usually at least 4-8 weeks.

          Wishing you lots of luck.  Your father is fortunate to have you supporting him.  One day at a time.

          Stay Strong

          King

          Stage IV  7/05  Liver mets

          • July 24, 2014 at 3:14 am
          King
          Participant

            Hi Kiley,

             I think you are fortunate that the Toledo oncologist and the U of M specialist are working together, they agree on the plan of treatment and are both telling you the same thing.  And there is a plan in place if and when your father completes his 4 Yervoy treatments.

            I am hoping a tumor is being tested for BRAF.  They wouldn't remove the 3 tumors in the small intestine since this would have delayed starting systemic treatment which is necessary because of the multiple areas of metastasis.  Recovery from an intestinal surgery is usually at least 4-8 weeks.

            Wishing you lots of luck.  Your father is fortunate to have you supporting him.  One day at a time.

            Stay Strong

            King

            Stage IV  7/05  Liver mets

              • July 25, 2014 at 8:11 pm
              lovelife15
              Participant

                Hi King

                Thank you for the kind words. My father is BRAF negative. We found out and the next day started Yervoy.   We are very lucky he started treatment as soon he did and that these doctors are working together. I just pray it keeps going as smooth as possible.

                If all the tumors are gone in his body besides his small intestine after the 4 Yervoy treatments, would they do the surgery then?

                should it be something we discuss?

                 

                Thank you

                Kiley

                • July 25, 2014 at 8:11 pm
                lovelife15
                Participant

                  Hi King

                  Thank you for the kind words. My father is BRAF negative. We found out and the next day started Yervoy.   We are very lucky he started treatment as soon he did and that these doctors are working together. I just pray it keeps going as smooth as possible.

                  If all the tumors are gone in his body besides his small intestine after the 4 Yervoy treatments, would they do the surgery then?

                  should it be something we discuss?

                   

                  Thank you

                  Kiley

                  • July 25, 2014 at 8:11 pm
                  lovelife15
                  Participant

                    Hi King

                    Thank you for the kind words. My father is BRAF negative. We found out and the next day started Yervoy.   We are very lucky he started treatment as soon he did and that these doctors are working together. I just pray it keeps going as smooth as possible.

                    If all the tumors are gone in his body besides his small intestine after the 4 Yervoy treatments, would they do the surgery then?

                    should it be something we discuss?

                     

                    Thank you

                    Kiley

                  • July 24, 2014 at 3:14 am
                  King
                  Participant

                    Hi Kiley,

                     I think you are fortunate that the Toledo oncologist and the U of M specialist are working together, they agree on the plan of treatment and are both telling you the same thing.  And there is a plan in place if and when your father completes his 4 Yervoy treatments.

                    I am hoping a tumor is being tested for BRAF.  They wouldn't remove the 3 tumors in the small intestine since this would have delayed starting systemic treatment which is necessary because of the multiple areas of metastasis.  Recovery from an intestinal surgery is usually at least 4-8 weeks.

                    Wishing you lots of luck.  Your father is fortunate to have you supporting him.  One day at a time.

                    Stay Strong

                    King

                    Stage IV  7/05  Liver mets

                    • July 24, 2014 at 4:00 am
                    ncdaniel
                    Participant

                      I live in toledo and my wife was in u of m care get to u of m for care.  There is an excellent specialist there Dr. Christopher Lao. I am not sure who you were seeing at the u of m but contact his office. It truly is a shame you did not get to u of m before starting treatment. Best of luck contact me if I can help at all.

                      daniel

                      • July 24, 2014 at 4:00 am
                      ncdaniel
                      Participant

                        I live in toledo and my wife was in u of m care get to u of m for care.  There is an excellent specialist there Dr. Christopher Lao. I am not sure who you were seeing at the u of m but contact his office. It truly is a shame you did not get to u of m before starting treatment. Best of luck contact me if I can help at all.

                        daniel

                          • July 25, 2014 at 8:23 pm
                          lovelife15
                          Participant

                            Hi Daniel

                            Dr. Loa is actually the doctor we've been working with. My dad has even spoke with him directly.

                            Since my dad was having pain in his stomach area (symptomatic) the doctors up at U of M and Toledo thought it would be best to start him right away since it would be another two to three before the U of M appointment.

                            Everything the Toledo oncologist has done, has been consulted by U of M which we are happy about. I'm just not sure why they said they wouldn't transfer in the middle of treatment when that was the original plan.

                            Did it take long for you to get up to U of M for treatment? What about trials? Are those hard to get into once your primary care is at U of M?

                            Thank you very much!

                            Kiley

                            • July 25, 2014 at 8:23 pm
                            lovelife15
                            Participant

                              Hi Daniel

                              Dr. Loa is actually the doctor we've been working with. My dad has even spoke with him directly.

                              Since my dad was having pain in his stomach area (symptomatic) the doctors up at U of M and Toledo thought it would be best to start him right away since it would be another two to three before the U of M appointment.

                              Everything the Toledo oncologist has done, has been consulted by U of M which we are happy about. I'm just not sure why they said they wouldn't transfer in the middle of treatment when that was the original plan.

                              Did it take long for you to get up to U of M for treatment? What about trials? Are those hard to get into once your primary care is at U of M?

                              Thank you very much!

                              Kiley

                              • July 25, 2014 at 8:23 pm
                              lovelife15
                              Participant

                                Hi Daniel

                                Dr. Loa is actually the doctor we've been working with. My dad has even spoke with him directly.

                                Since my dad was having pain in his stomach area (symptomatic) the doctors up at U of M and Toledo thought it would be best to start him right away since it would be another two to three before the U of M appointment.

                                Everything the Toledo oncologist has done, has been consulted by U of M which we are happy about. I'm just not sure why they said they wouldn't transfer in the middle of treatment when that was the original plan.

                                Did it take long for you to get up to U of M for treatment? What about trials? Are those hard to get into once your primary care is at U of M?

                                Thank you very much!

                                Kiley

                              • July 24, 2014 at 4:00 am
                              ncdaniel
                              Participant

                                I live in toledo and my wife was in u of m care get to u of m for care.  There is an excellent specialist there Dr. Christopher Lao. I am not sure who you were seeing at the u of m but contact his office. It truly is a shame you did not get to u of m before starting treatment. Best of luck contact me if I can help at all.

                                daniel

                                • July 27, 2014 at 1:50 pm
                                buffcody
                                Participant

                                  I also have Stage IV melanoma, have been going to U. of M., and my doctor is Dr. Lao.  I think your father is in great hands.  You have a very knowledgeable and compassionate doctor.  Also, I think he would not carry on a collaborative relationship with a doctor in Toledo unless he felt it was in the best interest of the patient.  If you need or want to get hold of him at any time, the best avenue is through his nurse. Tara.  Don't be afraid to keep them informed, ask questions, etc.  He, of course, is a very busy doctor, but he also will make time he doesn't always have on behalf of his patients.  He is also very willing to take the time at the appointments to make sure questions are answered to your and your father's concerns.

                                  • July 27, 2014 at 1:50 pm
                                  buffcody
                                  Participant

                                    I also have Stage IV melanoma, have been going to U. of M., and my doctor is Dr. Lao.  I think your father is in great hands.  You have a very knowledgeable and compassionate doctor.  Also, I think he would not carry on a collaborative relationship with a doctor in Toledo unless he felt it was in the best interest of the patient.  If you need or want to get hold of him at any time, the best avenue is through his nurse. Tara.  Don't be afraid to keep them informed, ask questions, etc.  He, of course, is a very busy doctor, but he also will make time he doesn't always have on behalf of his patients.  He is also very willing to take the time at the appointments to make sure questions are answered to your and your father's concerns.

                                    • July 27, 2014 at 1:50 pm
                                    buffcody
                                    Participant

                                      I also have Stage IV melanoma, have been going to U. of M., and my doctor is Dr. Lao.  I think your father is in great hands.  You have a very knowledgeable and compassionate doctor.  Also, I think he would not carry on a collaborative relationship with a doctor in Toledo unless he felt it was in the best interest of the patient.  If you need or want to get hold of him at any time, the best avenue is through his nurse. Tara.  Don't be afraid to keep them informed, ask questions, etc.  He, of course, is a very busy doctor, but he also will make time he doesn't always have on behalf of his patients.  He is also very willing to take the time at the appointments to make sure questions are answered to your and your father's concerns.

                                        • July 28, 2014 at 11:56 pm
                                        lovelife15
                                        Participant
                                          Hi
                                           
                                          Thank you for the kind words.  I've heard wonderful things about Dr. Lao and we can't wait to get up there. 
                                           
                                          And you're right, U of M would not carry on a collaborative relationship with a doctor in Toledo unless he felt it was in the best interest of the patient.
                                           
                                          Also, I have noticed that my dad has moments where he is upset and I try my best to comfort and understand what he is going through. Would it be a good idea for him to talk to others going through the same thing? He wants life as normal as possible and I agree/understand but maybe he can relate to other people in support groups?
                                           
                                          Any and all suggestions will help.
                                           
                                          Sunny Regards,
                                          Kiley
                                          • July 28, 2014 at 11:56 pm
                                          lovelife15
                                          Participant
                                            Hi
                                             
                                            Thank you for the kind words.  I've heard wonderful things about Dr. Lao and we can't wait to get up there. 
                                             
                                            And you're right, U of M would not carry on a collaborative relationship with a doctor in Toledo unless he felt it was in the best interest of the patient.
                                             
                                            Also, I have noticed that my dad has moments where he is upset and I try my best to comfort and understand what he is going through. Would it be a good idea for him to talk to others going through the same thing? He wants life as normal as possible and I agree/understand but maybe he can relate to other people in support groups?
                                             
                                            Any and all suggestions will help.
                                             
                                            Sunny Regards,
                                            Kiley
                                            • July 28, 2014 at 11:56 pm
                                            lovelife15
                                            Participant
                                              Hi
                                               
                                              Thank you for the kind words.  I've heard wonderful things about Dr. Lao and we can't wait to get up there. 
                                               
                                              And you're right, U of M would not carry on a collaborative relationship with a doctor in Toledo unless he felt it was in the best interest of the patient.
                                               
                                              Also, I have noticed that my dad has moments where he is upset and I try my best to comfort and understand what he is going through. Would it be a good idea for him to talk to others going through the same thing? He wants life as normal as possible and I agree/understand but maybe he can relate to other people in support groups?
                                               
                                              Any and all suggestions will help.
                                               
                                              Sunny Regards,
                                              Kiley
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