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.

FertilityDoc

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      FertilityDoc
      Participant
        First, apologies to all for the late response. I have been in a downward spiral over the past week. I have had more scans than I ever new existed, As mentioned there is an 8cm liver mass involving both liver lobes and some lymph node/peritoneal mets, Now biopsy confirmed melanoma. More disturbing, the dura around my cauda equina is involved and I am losing my ability to walk. I am still waiting for the BRAF results. I have been advised to start Tx ASAP due to the rapid onset. I was told I may not be a candidate for adoptive T cell therapy due to my liver enzymes. Radiation therapy to the spine is to begin today? am meeting with Thomas Gawefski at the U of C. This Friday and then MDA 1 week later. Assuming BRAF is positive then if will be Zelboraf. If BRAF WT then Yervoy or Biochem.

        I want to sincerely thanks everyone for their advice, suggested readings etc. This is a tough battle for all here. Your experience, time and advice is deeply appreciated from the bottom of my heart

        FertilityDoc
        Participant
          First, apologies to all for the late response. I have been in a downward spiral over the past week. I have had more scans than I ever new existed, As mentioned there is an 8cm liver mass involving both liver lobes and some lymph node/peritoneal mets, Now biopsy confirmed melanoma. More disturbing, the dura around my cauda equina is involved and I am losing my ability to walk. I am still waiting for the BRAF results. I have been advised to start Tx ASAP due to the rapid onset. I was told I may not be a candidate for adoptive T cell therapy due to my liver enzymes. Radiation therapy to the spine is to begin today? am meeting with Thomas Gawefski at the U of C. This Friday and then MDA 1 week later. Assuming BRAF is positive then if will be Zelboraf. If BRAF WT then Yervoy or Biochem.

          I want to sincerely thanks everyone for their advice, suggested readings etc. This is a tough battle for all here. Your experience, time and advice is deeply appreciated from the bottom of my heart

          FertilityDoc
          Participant
            First, apologies to all for the late response. I have been in a downward spiral over the past week. I have had more scans than I ever new existed, As mentioned there is an 8cm liver mass involving both liver lobes and some lymph node/peritoneal mets, Now biopsy confirmed melanoma. More disturbing, the dura around my cauda equina is involved and I am losing my ability to walk. I am still waiting for the BRAF results. I have been advised to start Tx ASAP due to the rapid onset. I was told I may not be a candidate for adoptive T cell therapy due to my liver enzymes. Radiation therapy to the spine is to begin today? am meeting with Thomas Gawefski at the U of C. This Friday and then MDA 1 week later. Assuming BRAF is positive then if will be Zelboraf. If BRAF WT then Yervoy or Biochem.

            I want to sincerely thanks everyone for their advice, suggested readings etc. This is a tough battle for all here. Your experience, time and advice is deeply appreciated from the bottom of my heart

            FertilityDoc
            Participant
              First, apologies to all for the late response. I have been in a downward spiral over the past week. I have had more scans than I ever new existed, As mentioned there is an 8cm liver mass involving both liver lobes and some lymph node/peritoneal mets, Now biopsy confirmed melanoma. More disturbing, the dura around my cauda equina is involved and I am losing my ability to walk. I am still waiting for the BRAF results. I have been advised to start Tx ASAP due to the rapid onset. I was told I may not be a candidate for adoptive T cell therapy due to my liver enzymes. Radiation therapy to the spine is to begin today? am meeting with Thomas Gawefski at the U of C. This Friday and then MDA 1 week later. Assuming BRAF is positive then if will be Zelboraf. If BRAF WT then Yervoy or Biochem.

              I want to sincerely thanks everyone for their advice, suggested readings etc. This is a tough battle for all here. Your experience, time and advice is deeply appreciated from the bottom of my heart

              FertilityDoc
              Participant
                First, apologies to all for the late response. I have been in a downward spiral over the past week. I have had more scans than I ever new existed, As mentioned there is an 8cm liver mass involving both liver lobes and some lymph node/peritoneal mets, Now biopsy confirmed melanoma. More disturbing, the dura around my cauda equina is involved and I am losing my ability to walk. I am still waiting for the BRAF results. I have been advised to start Tx ASAP due to the rapid onset. I was told I may not be a candidate for adoptive T cell therapy due to my liver enzymes. Radiation therapy to the spine is to begin today? am meeting with Thomas Gawefski at the U of C. This Friday and then MDA 1 week later. Assuming BRAF is positive then if will be Zelboraf. If BRAF WT then Yervoy or Biochem.

                I want to sincerely thanks everyone for their advice, suggested readings etc. This is a tough battle for all here. Your experience, time and advice is deeply appreciated from the bottom of my heart

                FertilityDoc
                Participant
                  First, apologies to all for the late response. I have been in a downward spiral over the past week. I have had more scans than I ever new existed, As mentioned there is an 8cm liver mass involving both liver lobes and some lymph node/peritoneal mets, Now biopsy confirmed melanoma. More disturbing, the dura around my cauda equina is involved and I am losing my ability to walk. I am still waiting for the BRAF results. I have been advised to start Tx ASAP due to the rapid onset. I was told I may not be a candidate for adoptive T cell therapy due to my liver enzymes. Radiation therapy to the spine is to begin today? am meeting with Thomas Gawefski at the U of C. This Friday and then MDA 1 week later. Assuming BRAF is positive then if will be Zelboraf. If BRAF WT then Yervoy or Biochem.

                  I want to sincerely thanks everyone for their advice, suggested readings etc. This is a tough battle for all here. Your experience, time and advice is deeply appreciated from the bottom of my heart

                  FertilityDoc
                  Participant
                    Ayn,

                    My heart goes out to you. Most of us are in a stage of shock and disbelief after the initial diagnosis. I was diagnosed with Stage IIIB melanoma in 04/11. The options at this stage are not optimal. There is interferon of course. GM CSF was given at some centers. There were some studies on Ipilimumab the time. It was difficult understanding I’d be subject to randomization. I spoke to 3 oncologists before settling on Interferon. I know how to interpret the medical literature. I did the full year of interferon. I. Have a desk job. I found myself having to take a nap at lunch but was able to get through the day. I sit here 2 years later without a recurrence and with each passing day the odds get better. It is a very personal decision. Is the interferon the reason I am disease free today? I’ll never know. I never regretted the decision to do the interferon. I could not sit back and wait for things to happen. I could not live with myself saying “coulda or shoulda”. Whatever decision you make, close the door on it. Live life to the fullest and don’t allow the disease to define you.

                    FertilityDoc
                    Participant
                      Ayn,

                      My heart goes out to you. Most of us are in a stage of shock and disbelief after the initial diagnosis. I was diagnosed with Stage IIIB melanoma in 04/11. The options at this stage are not optimal. There is interferon of course. GM CSF was given at some centers. There were some studies on Ipilimumab the time. It was difficult understanding I’d be subject to randomization. I spoke to 3 oncologists before settling on Interferon. I know how to interpret the medical literature. I did the full year of interferon. I. Have a desk job. I found myself having to take a nap at lunch but was able to get through the day. I sit here 2 years later without a recurrence and with each passing day the odds get better. It is a very personal decision. Is the interferon the reason I am disease free today? I’ll never know. I never regretted the decision to do the interferon. I could not sit back and wait for things to happen. I could not live with myself saying “coulda or shoulda”. Whatever decision you make, close the door on it. Live life to the fullest and don’t allow the disease to define you.

                      FertilityDoc
                      Participant

                        As others have pointed out, it is a very personal decision.  For many Stage III patients with completely resected melanomas, the options are few.  It is mostly Interferon or Ipi. I am a stage IIIB melanoma patient.   I read most of the research on this before making a decision and consulted with 3 different oncologists.  Ultimately, I decided to go with the interferon.  I was diagnosed in 04/2009.  Finished the last interferon in 06/2010.   For some reason I found the high dose IV month to be easy.  The 11 subcutaneous months were more difficult.  I had many side effects but tiredness and muscle fatigue were the prominent ones.  I completed the full year.   I was thankful that I have a desk job.  I slowed down a little at work but was able to get through it.  If I had a physically demanding job, it would have been vastly more difficult.

                        Thus far my scans have been completely negative.  I was back to normal 1 month after finishing the interferon.  You forget how bad you feel on the interferon until you stop it and you are normal again  As the expression goes, It's a long way to Tipperary.  I am sincerely thankful to be disease and symptom free at this point.  Was it the interon or my underlying tumor biology?  I'll never know.  I'll never look back at the decision.  I had to make the decision in an aggressive and proactive way.   No regrets allowed.

                        Kevin L

                        FertilityDoc
                        Participant

                          As others have pointed out, it is a very personal decision.  For many Stage III patients with completely resected melanomas, the options are few.  It is mostly Interferon or Ipi. I am a stage IIIB melanoma patient.   I read most of the research on this before making a decision and consulted with 3 different oncologists.  Ultimately, I decided to go with the interferon.  I was diagnosed in 04/2009.  Finished the last interferon in 06/2010.   For some reason I found the high dose IV month to be easy.  The 11 subcutaneous months were more difficult.  I had many side effects but tiredness and muscle fatigue were the prominent ones.  I completed the full year.   I was thankful that I have a desk job.  I slowed down a little at work but was able to get through it.  If I had a physically demanding job, it would have been vastly more difficult.

                          Thus far my scans have been completely negative.  I was back to normal 1 month after finishing the interferon.  You forget how bad you feel on the interferon until you stop it and you are normal again  As the expression goes, It's a long way to Tipperary.  I am sincerely thankful to be disease and symptom free at this point.  Was it the interon or my underlying tumor biology?  I'll never know.  I'll never look back at the decision.  I had to make the decision in an aggressive and proactive way.   No regrets allowed.

                          Kevin L

                          FertilityDoc
                          Participant

                            As others have pointed out, it is a very personal decision.  For many Stage III patients with completely resected melanomas, the options are few.  It is mostly Interferon or Ipi. I am a stage IIIB melanoma patient.   I read most of the research on this before making a decision and consulted with 3 different oncologists.  Ultimately, I decided to go with the interferon.  I was diagnosed in 04/2009.  Finished the last interferon in 06/2010.   For some reason I found the high dose IV month to be easy.  The 11 subcutaneous months were more difficult.  I had many side effects but tiredness and muscle fatigue were the prominent ones.  I completed the full year.   I was thankful that I have a desk job.  I slowed down a little at work but was able to get through it.  If I had a physically demanding job, it would have been vastly more difficult.

                            Thus far my scans have been completely negative.  I was back to normal 1 month after finishing the interferon.  You forget how bad you feel on the interferon until you stop it and you are normal again  As the expression goes, It's a long way to Tipperary.  I am sincerely thankful to be disease and symptom free at this point.  Was it the interon or my underlying tumor biology?  I'll never know.  I'll never look back at the decision.  I had to make the decision in an aggressive and proactive way.   No regrets allowed.

                            Kevin L

                            FertilityDoc
                            Participant

                              As others have pointed out, it is a very personal decision.  For many Stage III patients with completely resected melanomas, the options are few.  It is mostly Interferon or Ipi. I am a stage IIIB melanoma patient.   I read most of the research on this before making a decision and consulted with 3 different oncologists.  Ultimately, I decided to go with the interferon.  I was diagnosed in 04/2009.  Finished the last interferon in 06/2010.   For some reason I found the high dose IV month to be easy.  The 11 subcutaneous months were more difficult.  I had many side effects but tiredness and muscle fatigue were the prominent ones.  I completed the full year.   I was thankful that I have a desk job.  I slowed down a little at work but was able to get through it.  If I had a physically demanding job, it would have been vastly more difficult.

                              Thus far my scans have been completely negative.  I was back to normal 1 month after finishing the interferon.  You forget how bad you feel on the interferon until you stop it and you are normal again  As the expression goes, It's a long way to Tipperary.  I am sincerely thankful to be disease and symptom free at this point.  Was it the interon or my underlying tumor biology?  I'll never know.  I'll never look back at the decision.  I had to make the decision in an aggressive and proactive way.   No regrets allowed.

                              Kevin L

                              FertilityDoc
                              Participant

                                DEnnest,

                                I have placed some information from the NIH below.  It is always a hard decision with imperfect data to guide us.  At stage 1 you might be okay but I would still discuss it with a melanoma specialist.  You have to take your own reproductive age into consideration.  If you are in your late 20's or early 30's you have time.  If you are in your mid thirties and beyond, you need to take overall fertility into consideration.

                                Hope it helps,

                                Kevin

                                 

                                Should women who previously were diagnosed with
                                melanoma avoid pregnancy?

                                The issue here is whether pregnancy activates micrometastatic
                                disease. There is no convincing evidence
                                that pregnancy activates or stimulates dormant micrometastatic
                                disease, although anecdotal case reports
                                certainly suggest that this may happen in some cases. One
                                of the difficulties in addressing this question is that it is
                                impossible to know prospectively which patients are harboring
                                micrometastases. One author noted similar fiveand
                                ten-year survival rates for 115 patients who were
                                pregnant with melanoma compared with 330 female
                                melanoma patients who were never pregnant during or after
                                their diagnosis.' The pregnant group, however, had a
                                higher frequency of lymph node involvement at the time
                                of diagnosis. A better survival was actually noted for 71
                                patients who were pregnant within a year before or five
                                years after a diagnosis of melanoma, but the control group
                                consisted of only 31 women who did not get pregnant
                                during a similar interval and who actually had higher
                                stage disease.47 In another study, women diagnosed with
                                melanoma before getting pregnant were compared with
                                women diagnosed after completing all pregnancies.39 The
                                latter group actually appeared to do worse at five years,
                                although statistical comparison was not provided. In a retrospective
                                study conducted at Duke University, 43
                                women with stage I melanoma who became pregnant
                                within the next five years had prognoses similar to those
                                of 337 women who did not get pregnant, both in terms of
                                relapse and disease-free survival.9
                                There is no evidence that nulliparous women as a
                                group differ from parous women as a group, in terms of
                                prognosis from the time of a subsequent diagnosis of
                                melanoma while pregnant. In a study that compared 85
                                women diagnosed with melanoma before their first pregnancy
                                with 143 women who had completed all pregnancies,
                                melanoma developed in 68 between pregnancies and
                                in 92 during pregnancy, and there was no difference in
                                these groups.39 Two other small studies also found no difference
                                in prognosis for nulliparous as opposed to parous
                                women,4M42 although the studies were small in scope. The
                                only trials that address the issue of the importance of subsequent
                                pregnancy on prognosis have failed to identify
                                parity as an important variable in multivariate analysis.39
                                In the absence of definitive data, many authorities have
                                recommended that women avoid pregnancy for two to
                                five years after a diagnosis of melanoma, mainly because
                                that is the time period during which most recurrences are
                                diagnosed.'944149 In one study, such patients who did become
                                pregnant were actually used as controls to compare
                                with patients who were being diagnosed with melanoma
                                for the first time while pregnant.37

                                Should women who previously were diagnosed with
                                melanoma during a pregnancy avoid subsequent pregnancy?
                                Historically, there has been great concern regarding
                                the risk of subsequent pregnancy in women who were initially
                                diagnosed with melanoma during a previous pregnancy,
                                based on the presumption that these melanomas in
                                particular may be influenced adversely by growth factors
                                and hormones secreted during pregnancy. Earlier observers
                                felt strongly that pregnancy worsened the prognosis
                                in this group of patients.2549 There is no objective
                                evidence that this group is at higher risk with subsequent
                                pregnancy, however. Despite this, the consensus is to recommend
                                the deferral of subsequent pregnancy for two to
                                three years in women in whom a primary melanoma developed
                                during pregnancy.7

                                Is there a risk of transplacental metastases to the fetus:?

                                There definitely is a risk of transplacental transmission
                                of melanoma from mother to fetus, but fortunately
                                this risk is low.  Placental involvement itself is indicative
                                of widespread hematogenous dissemination in the
                                mother, but placental involvement does not necessarily
                                mean that the newborn baby will have melanoma. Of 35
                                cases of placental or fetal involvement with cancer following
                                pregnancy, one study found that 11 were due to
                                melanoma, the most common cancer associated with this
                                phenomenon, followed by leukemia or lymphoma. Of
                                the 11 melanoma patients, the placenta was involved in 7
                                and the fetus in 6. Two of the infants with melanoma underwent
                                spontaneous regression of disease after delivery.
                                It has been suggested that only 25% of infants with placental
                                metastatic melanoma will actually die of metastatic
                                melanoma, and it is almost always manifest at the time
                                of delivery and then fails to regress spontaneously after
                                delivery. The implications of these observations are that
                                women diagnosed with metastatic melanoma during
                                pregnancy need not abort their fetus out of a fear of
                                transplacental spread, and active therapy for a fetus born
                                in the setting of placental metastases is not warranted. 

                                FertilityDoc
                                Participant

                                  DEnnest,

                                  I have placed some information from the NIH below.  It is always a hard decision with imperfect data to guide us.  At stage 1 you might be okay but I would still discuss it with a melanoma specialist.  You have to take your own reproductive age into consideration.  If you are in your late 20's or early 30's you have time.  If you are in your mid thirties and beyond, you need to take overall fertility into consideration.

                                  Hope it helps,

                                  Kevin

                                   

                                  Should women who previously were diagnosed with
                                  melanoma avoid pregnancy?

                                  The issue here is whether pregnancy activates micrometastatic
                                  disease. There is no convincing evidence
                                  that pregnancy activates or stimulates dormant micrometastatic
                                  disease, although anecdotal case reports
                                  certainly suggest that this may happen in some cases. One
                                  of the difficulties in addressing this question is that it is
                                  impossible to know prospectively which patients are harboring
                                  micrometastases. One author noted similar fiveand
                                  ten-year survival rates for 115 patients who were
                                  pregnant with melanoma compared with 330 female
                                  melanoma patients who were never pregnant during or after
                                  their diagnosis.' The pregnant group, however, had a
                                  higher frequency of lymph node involvement at the time
                                  of diagnosis. A better survival was actually noted for 71
                                  patients who were pregnant within a year before or five
                                  years after a diagnosis of melanoma, but the control group
                                  consisted of only 31 women who did not get pregnant
                                  during a similar interval and who actually had higher
                                  stage disease.47 In another study, women diagnosed with
                                  melanoma before getting pregnant were compared with
                                  women diagnosed after completing all pregnancies.39 The
                                  latter group actually appeared to do worse at five years,
                                  although statistical comparison was not provided. In a retrospective
                                  study conducted at Duke University, 43
                                  women with stage I melanoma who became pregnant
                                  within the next five years had prognoses similar to those
                                  of 337 women who did not get pregnant, both in terms of
                                  relapse and disease-free survival.9
                                  There is no evidence that nulliparous women as a
                                  group differ from parous women as a group, in terms of
                                  prognosis from the time of a subsequent diagnosis of
                                  melanoma while pregnant. In a study that compared 85
                                  women diagnosed with melanoma before their first pregnancy
                                  with 143 women who had completed all pregnancies,
                                  melanoma developed in 68 between pregnancies and
                                  in 92 during pregnancy, and there was no difference in
                                  these groups.39 Two other small studies also found no difference
                                  in prognosis for nulliparous as opposed to parous
                                  women,4M42 although the studies were small in scope. The
                                  only trials that address the issue of the importance of subsequent
                                  pregnancy on prognosis have failed to identify
                                  parity as an important variable in multivariate analysis.39
                                  In the absence of definitive data, many authorities have
                                  recommended that women avoid pregnancy for two to
                                  five years after a diagnosis of melanoma, mainly because
                                  that is the time period during which most recurrences are
                                  diagnosed.'944149 In one study, such patients who did become
                                  pregnant were actually used as controls to compare
                                  with patients who were being diagnosed with melanoma
                                  for the first time while pregnant.37

                                  Should women who previously were diagnosed with
                                  melanoma during a pregnancy avoid subsequent pregnancy?
                                  Historically, there has been great concern regarding
                                  the risk of subsequent pregnancy in women who were initially
                                  diagnosed with melanoma during a previous pregnancy,
                                  based on the presumption that these melanomas in
                                  particular may be influenced adversely by growth factors
                                  and hormones secreted during pregnancy. Earlier observers
                                  felt strongly that pregnancy worsened the prognosis
                                  in this group of patients.2549 There is no objective
                                  evidence that this group is at higher risk with subsequent
                                  pregnancy, however. Despite this, the consensus is to recommend
                                  the deferral of subsequent pregnancy for two to
                                  three years in women in whom a primary melanoma developed
                                  during pregnancy.7

                                  Is there a risk of transplacental metastases to the fetus:?

                                  There definitely is a risk of transplacental transmission
                                  of melanoma from mother to fetus, but fortunately
                                  this risk is low.  Placental involvement itself is indicative
                                  of widespread hematogenous dissemination in the
                                  mother, but placental involvement does not necessarily
                                  mean that the newborn baby will have melanoma. Of 35
                                  cases of placental or fetal involvement with cancer following
                                  pregnancy, one study found that 11 were due to
                                  melanoma, the most common cancer associated with this
                                  phenomenon, followed by leukemia or lymphoma. Of
                                  the 11 melanoma patients, the placenta was involved in 7
                                  and the fetus in 6. Two of the infants with melanoma underwent
                                  spontaneous regression of disease after delivery.
                                  It has been suggested that only 25% of infants with placental
                                  metastatic melanoma will actually die of metastatic
                                  melanoma, and it is almost always manifest at the time
                                  of delivery and then fails to regress spontaneously after
                                  delivery. The implications of these observations are that
                                  women diagnosed with metastatic melanoma during
                                  pregnancy need not abort their fetus out of a fear of
                                  transplacental spread, and active therapy for a fetus born
                                  in the setting of placental metastases is not warranted. 

                                  FertilityDoc
                                  Participant

                                    My upper abdomal pain had driven me crazy over the past week.  I had my CT of the chest and abdomen this morning.  I probably drove the tech crazy by letting me look at the liver images after getting up off the table.  They kindly indulged me.  Had a quick review by the radiologist and they could not find anything compared with my prior scans.  I don't have to worry about this for another 6 blissful months.  I told the radiologist it was my Christmas present.

                                    Again sincere thanks to all for sharing their experiences with a similar situation.  It helped to calm me down prior to my scan.  I never lose sight of the fact that so many of you who frequent this board persevere through your own personal struggles.  I will say a silent prayer for all this evening.  I wish all of you a very Happy Thanksgiving full of joy, peace and special times with your families.

                                    Prosit,

                                    Kevin

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