Forum Replies Created
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- December 4, 2012 at 6:24 pm
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
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- December 4, 2012 at 6:24 pm
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
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- December 4, 2012 at 6:24 pm
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
-
- December 4, 2012 at 6:21 pm
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
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- December 4, 2012 at 6:21 pm
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
-
- December 4, 2012 at 6:21 pm
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
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- June 3, 2011 at 11:54 pm
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.
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- June 3, 2011 at 11:54 pm
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.
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- April 8, 2011 at 4:05 am
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
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- April 8, 2011 at 4:05 am
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
-
- April 8, 2011 at 4:04 am
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
-
- April 8, 2011 at 4:04 am
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
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- March 6, 2011 at 1:19 am
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.37Should 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.7Is 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. -
- March 6, 2011 at 1:19 am
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.37Should 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.7Is 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. -
- November 24, 2010 at 11:56 pm
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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