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New report on pregnancy and melanoma

Forums General Melanoma Community New report on pregnancy and melanoma

  • Post
    OkieJen
    Participant

      So, just wondering if anyone else is worried about the new report on pregnancy and melanoma. I am 40 years old and diagnosed with a Stage 1a melanoma last September (0.25mm breslow depth reclassified from 0.4mm following a re-read at MDA and <1 mitotic figure). I had a subsequent WLE at MD Anderson in October. (no SLNs biopsies taken). I have a two year old daughter and when looking back at photos my melanoma was present when I was pregnant. I have a recheck appointment at MDA in April for thoracic radiographs (aka chest x-rays) and am seeing my local dermatologist for a skin re-check in February. According to the report, melanoma in pregnant women or women diagnosed soon after giving birth  (including stage 0 and stage 1) are at increased risk of metastases and their melanomas are more aggressive. Just wondering if I should be getting rechecks more often rather than every 6 months. Even more spooked now.

    Viewing 11 reply threads
    • Replies
        uccio2014
        Participant

          My wife was diagnosed of a large melanoma when pregnant (7 mounth) and immediatelly there was the surgey.

          Unfortunatelly 1 year later (when stop to breastfeed- do it matters?) there was a lot of spread in bones liver lung and sthomac.

          she start zelboraf and most spread disappear, but 1 year later (this summer) there was spread to brain.

          She had wbr and at now brian meets are stable and next week i can tell you abot the rest of the body.

          In any case she feel really well a part common z side effects.

          uccio2014
          Participant

            My wife was diagnosed of a large melanoma when pregnant (7 mounth) and immediatelly there was the surgey.

            Unfortunatelly 1 year later (when stop to breastfeed- do it matters?) there was a lot of spread in bones liver lung and sthomac.

            she start zelboraf and most spread disappear, but 1 year later (this summer) there was spread to brain.

            She had wbr and at now brian meets are stable and next week i can tell you abot the rest of the body.

            In any case she feel really well a part common z side effects.

              OkieJen
              Participant

                I am so sorry that you, your family, and everyone battling melanoma is having to go through this. We should be enjoying our time with our new babies and young children and families and not dealing with fear or battling the spread of this disease. Thank you for being open with me. I am definitely scared of the wait and see approach. I have a medical background and I think that just makes it worse. I did call MDA and they said they are not recommending anything different. I just have to be deligent in monitoring my moles and hope I will not have evidence of metastases at my check ups.  I will be praying for your family and hope your wife continues to feel well and improves with her treatment!

                OkieJen
                Participant

                  I am so sorry that you, your family, and everyone battling melanoma is having to go through this. We should be enjoying our time with our new babies and young children and families and not dealing with fear or battling the spread of this disease. Thank you for being open with me. I am definitely scared of the wait and see approach. I have a medical background and I think that just makes it worse. I did call MDA and they said they are not recommending anything different. I just have to be deligent in monitoring my moles and hope I will not have evidence of metastases at my check ups.  I will be praying for your family and hope your wife continues to feel well and improves with her treatment!

                  OkieJen
                  Participant

                    I am so sorry that you, your family, and everyone battling melanoma is having to go through this. We should be enjoying our time with our new babies and young children and families and not dealing with fear or battling the spread of this disease. Thank you for being open with me. I am definitely scared of the wait and see approach. I have a medical background and I think that just makes it worse. I did call MDA and they said they are not recommending anything different. I just have to be deligent in monitoring my moles and hope I will not have evidence of metastases at my check ups.  I will be praying for your family and hope your wife continues to feel well and improves with her treatment!

                  uccio2014
                  Participant

                    My wife was diagnosed of a large melanoma when pregnant (7 mounth) and immediatelly there was the surgey.

                    Unfortunatelly 1 year later (when stop to breastfeed- do it matters?) there was a lot of spread in bones liver lung and sthomac.

                    she start zelboraf and most spread disappear, but 1 year later (this summer) there was spread to brain.

                    She had wbr and at now brian meets are stable and next week i can tell you abot the rest of the body.

                    In any case she feel really well a part common z side effects.

                    WithinMySkin
                    Participant
                      Hi OkieJen. You included a solution in your post – pictures! Take pictures of every part of your skin. I mean it. Every part. Compare these pics to your skin every month. My husband and I have a monthly “skin date” to see if anything has changed. If you are extra worried, then during these monthly checks, feel your lymph nodes.

                      I’m very much a proponent of self checks. If it CHANGES, get it checked. You don’t want to be swiss cheese due to fear.

                      Plus, I don’t think most insurance would accept monthly derm visits. Trust yourself and trust your body. And trust the derm every 6 months 😉

                      Good luck! WithinMySkin

                        OkieJen
                        Participant

                          Thanks so much for the advice. I have taken pictures of my surgical site but not my other moles. I will start doing whole body pictures. To be honest I am suprised that my dermatologist isn't doing it. She specializes in skin cancer. I suppose it would take too much time. I am not sure my insurance would cover montly visits, but I am currently going in every three months with my dermatologist for check ups and to MDA every 6 months. Insurance has been paying so far.  I will go right in if I see anything out of the ordinary pop up. Thanks again for the support!

                          OkieJen
                          Participant

                            Thanks so much for the advice. I have taken pictures of my surgical site but not my other moles. I will start doing whole body pictures. To be honest I am suprised that my dermatologist isn't doing it. She specializes in skin cancer. I suppose it would take too much time. I am not sure my insurance would cover montly visits, but I am currently going in every three months with my dermatologist for check ups and to MDA every 6 months. Insurance has been paying so far.  I will go right in if I see anything out of the ordinary pop up. Thanks again for the support!

                            OkieJen
                            Participant

                              Thanks so much for the advice. I have taken pictures of my surgical site but not my other moles. I will start doing whole body pictures. To be honest I am suprised that my dermatologist isn't doing it. She specializes in skin cancer. I suppose it would take too much time. I am not sure my insurance would cover montly visits, but I am currently going in every three months with my dermatologist for check ups and to MDA every 6 months. Insurance has been paying so far.  I will go right in if I see anything out of the ordinary pop up. Thanks again for the support!

                              WithinMySkin
                              Participant
                                That’s what we’re here for! Unfortunately, only some derms take pictures of moles to keep track. I think most melanoma patients have lots of moles, so it would be difficult to do so (Medical software isn’t always user friendly). 3 months is right on for derm checks and in between keep your eyes peeled!

                                WithinMySkin

                                WithinMySkin
                                Participant
                                  That’s what we’re here for! Unfortunately, only some derms take pictures of moles to keep track. I think most melanoma patients have lots of moles, so it would be difficult to do so (Medical software isn’t always user friendly). 3 months is right on for derm checks and in between keep your eyes peeled!

                                  WithinMySkin

                                  WithinMySkin
                                  Participant
                                    That’s what we’re here for! Unfortunately, only some derms take pictures of moles to keep track. I think most melanoma patients have lots of moles, so it would be difficult to do so (Medical software isn’t always user friendly). 3 months is right on for derm checks and in between keep your eyes peeled!

                                    WithinMySkin

                                  WithinMySkin
                                  Participant
                                    Hi OkieJen. You included a solution in your post – pictures! Take pictures of every part of your skin. I mean it. Every part. Compare these pics to your skin every month. My husband and I have a monthly “skin date” to see if anything has changed. If you are extra worried, then during these monthly checks, feel your lymph nodes.

                                    I’m very much a proponent of self checks. If it CHANGES, get it checked. You don’t want to be swiss cheese due to fear.

                                    Plus, I don’t think most insurance would accept monthly derm visits. Trust yourself and trust your body. And trust the derm every 6 months 😉

                                    Good luck! WithinMySkin

                                    WithinMySkin
                                    Participant
                                      Hi OkieJen. You included a solution in your post – pictures! Take pictures of every part of your skin. I mean it. Every part. Compare these pics to your skin every month. My husband and I have a monthly “skin date” to see if anything has changed. If you are extra worried, then during these monthly checks, feel your lymph nodes.

                                      I’m very much a proponent of self checks. If it CHANGES, get it checked. You don’t want to be swiss cheese due to fear.

                                      Plus, I don’t think most insurance would accept monthly derm visits. Trust yourself and trust your body. And trust the derm every 6 months 😉

                                      Good luck! WithinMySkin

                                      ashley_k
                                      Participant

                                        Hi!,

                                        Yes, this news has sort of set me into a tailspin.  July 1st I was diagnosed with Stage 1A melanoma at 35 weeks pregnant.  I had the mole for years and it appeared after I had my 2nd kid (I believe back in 2010) – and had a dermatologist look at it in 2013 who told me not to worry about it (it was on my stomach).  

                                        An OB saw it mid June 2015 when I was pregnant with my 3rd child and sent me to her dermatologist (she had melanoma herself 10 years prior).  Biopsy and WLE (done July 26th) were clear.  Since then had 7 additional moles removed and all have been mildly atypical.  

                                        Baby was born the first week in August.  What was really frustrating was that the doctors could not agree on when to do the WLE (with baby in tummy or after I had delivered or if I should be induced between OB/High Risk/Derm) to the point I put my foot down and told them I wanted the surgery done before delivery.

                                        So you are having chest xrays at MDA?  No one has mentioned this to me or told me it is even an option.

                                        I live in Virginia Beach and do not know if there is an melanoma specialist in the area – guess it can't hurt to have that information so if anyone can recommend a group …that would be great.

                                        Since mole mapping is not available in the area I had professional photographs taken of my body yesterday and just learned of some moles I did not know I had (from the photos).  

                                        Does anyone know how quickly a new mole can form and metatisize? (is 3 months a safe timeframe between appointments)?

                                        I know we are looking for 'changes' in the moles but what about those moles I've had for ages that could be melanoma, how do I know I don't already have it somewhere else on my body?  I have a lot of abnormal looking moles.

                                        Also, I'm a bit concerned as some light brown pigment is returning where the melanoma was around my 'sharkbite' or WLE scar.  The melanoma was super dark, like black so I don't know if I should be concerned about light brown pigment returning.

                                        Keep me posted…Ash

                                          OkieJen
                                          Participant

                                            Hello Ash,

                                               I would definitely try to find a melanoma speciality group in your area. I live in Oklahoma (used to live in Blacksburg, VA-a beautiful place) and was refered to local plastic surgeon to remove my melanoma but cancelled that appoitment and immediately called MD Anderson in Houston, TX. I made an appointment there and had a WLE surgery the next day with a surgical oncologist. Right now I am getting recheck skin checks with my local dermatologist in Oklahoma City (who specialized in skin cancer) every 3 months and recheck exams and chest x-rays at MD Anderson every six months with my surgical oncologist. It's a 7-8 hours drive to Houston, so not too bad. I am toying with the idea of whether I should consult with medical oncologist that specializes in melanoma just to make sure my basis are covered. I think it good to have a foot in the door just in case my condition gets worse (crossing figers), and I need more aggressive treatment. MD Anderson also seems to have clinical trials that go on every now and then.

                                            My husband and I were wanting to have another baby, and I got the okay from MD Anderson and my dermatologist following my surgery (in October 2015), but with this new report on pregnancy, we have decided to not have any other children. I want to be here/alive for my daughter and watch her grow up as long as possible. I know you do too! Thankfully your melanoma was diagnosed early too. I wish I could find someone to do professional photographs. I can't even imagine where I would start looking for someone to do that. I do worry about only being checked for lung mets with chest x-rays every 6 months. The alternative is excessive exposure to radiation from x-rays more frequently which can cause other problems/tumors. I also recently had some brown pigmentation return right smack dab in the middle of my scar. I happened to be in Australia on vacation when I noticed it. I immediately freaked out and took pictures and sent them to my doctor at MD Anderson. He told me they were freckles and to monitor them monthly. MD Anderson has a great patient portal where you can communicate/email your doctor with questions and concerns. They respond really quickly. It may not always be my sugical oncologist that responds, but it will either be him, his fellow/resident, or his nurse who will have spoken with him. directly. MDA is fine oiled machine that takes patient care seriously. So far, I am happy going there. Anyway, hang in there. I definitely understand your stress and anxiety. It comes and goes in waves for me. I try to keep busy with activities and reading. Enjoy your three babies! I am so jealous. We really would have loved to have another child, but just don't want to risk it.  Take care. -Jen

                                            OkieJen
                                            Participant

                                              Hello Ash,

                                                 I would definitely try to find a melanoma speciality group in your area. I live in Oklahoma (used to live in Blacksburg, VA-a beautiful place) and was refered to local plastic surgeon to remove my melanoma but cancelled that appoitment and immediately called MD Anderson in Houston, TX. I made an appointment there and had a WLE surgery the next day with a surgical oncologist. Right now I am getting recheck skin checks with my local dermatologist in Oklahoma City (who specialized in skin cancer) every 3 months and recheck exams and chest x-rays at MD Anderson every six months with my surgical oncologist. It's a 7-8 hours drive to Houston, so not too bad. I am toying with the idea of whether I should consult with medical oncologist that specializes in melanoma just to make sure my basis are covered. I think it good to have a foot in the door just in case my condition gets worse (crossing figers), and I need more aggressive treatment. MD Anderson also seems to have clinical trials that go on every now and then.

                                              My husband and I were wanting to have another baby, and I got the okay from MD Anderson and my dermatologist following my surgery (in October 2015), but with this new report on pregnancy, we have decided to not have any other children. I want to be here/alive for my daughter and watch her grow up as long as possible. I know you do too! Thankfully your melanoma was diagnosed early too. I wish I could find someone to do professional photographs. I can't even imagine where I would start looking for someone to do that. I do worry about only being checked for lung mets with chest x-rays every 6 months. The alternative is excessive exposure to radiation from x-rays more frequently which can cause other problems/tumors. I also recently had some brown pigmentation return right smack dab in the middle of my scar. I happened to be in Australia on vacation when I noticed it. I immediately freaked out and took pictures and sent them to my doctor at MD Anderson. He told me they were freckles and to monitor them monthly. MD Anderson has a great patient portal where you can communicate/email your doctor with questions and concerns. They respond really quickly. It may not always be my sugical oncologist that responds, but it will either be him, his fellow/resident, or his nurse who will have spoken with him. directly. MDA is fine oiled machine that takes patient care seriously. So far, I am happy going there. Anyway, hang in there. I definitely understand your stress and anxiety. It comes and goes in waves for me. I try to keep busy with activities and reading. Enjoy your three babies! I am so jealous. We really would have loved to have another child, but just don't want to risk it.  Take care. -Jen

                                              OkieJen
                                              Participant

                                                Hello Ash,

                                                   I would definitely try to find a melanoma speciality group in your area. I live in Oklahoma (used to live in Blacksburg, VA-a beautiful place) and was refered to local plastic surgeon to remove my melanoma but cancelled that appoitment and immediately called MD Anderson in Houston, TX. I made an appointment there and had a WLE surgery the next day with a surgical oncologist. Right now I am getting recheck skin checks with my local dermatologist in Oklahoma City (who specialized in skin cancer) every 3 months and recheck exams and chest x-rays at MD Anderson every six months with my surgical oncologist. It's a 7-8 hours drive to Houston, so not too bad. I am toying with the idea of whether I should consult with medical oncologist that specializes in melanoma just to make sure my basis are covered. I think it good to have a foot in the door just in case my condition gets worse (crossing figers), and I need more aggressive treatment. MD Anderson also seems to have clinical trials that go on every now and then.

                                                My husband and I were wanting to have another baby, and I got the okay from MD Anderson and my dermatologist following my surgery (in October 2015), but with this new report on pregnancy, we have decided to not have any other children. I want to be here/alive for my daughter and watch her grow up as long as possible. I know you do too! Thankfully your melanoma was diagnosed early too. I wish I could find someone to do professional photographs. I can't even imagine where I would start looking for someone to do that. I do worry about only being checked for lung mets with chest x-rays every 6 months. The alternative is excessive exposure to radiation from x-rays more frequently which can cause other problems/tumors. I also recently had some brown pigmentation return right smack dab in the middle of my scar. I happened to be in Australia on vacation when I noticed it. I immediately freaked out and took pictures and sent them to my doctor at MD Anderson. He told me they were freckles and to monitor them monthly. MD Anderson has a great patient portal where you can communicate/email your doctor with questions and concerns. They respond really quickly. It may not always be my sugical oncologist that responds, but it will either be him, his fellow/resident, or his nurse who will have spoken with him. directly. MDA is fine oiled machine that takes patient care seriously. So far, I am happy going there. Anyway, hang in there. I definitely understand your stress and anxiety. It comes and goes in waves for me. I try to keep busy with activities and reading. Enjoy your three babies! I am so jealous. We really would have loved to have another child, but just don't want to risk it.  Take care. -Jen

                                              ashley_k
                                              Participant

                                                Hi!,

                                                Yes, this news has sort of set me into a tailspin.  July 1st I was diagnosed with Stage 1A melanoma at 35 weeks pregnant.  I had the mole for years and it appeared after I had my 2nd kid (I believe back in 2010) – and had a dermatologist look at it in 2013 who told me not to worry about it (it was on my stomach).  

                                                An OB saw it mid June 2015 when I was pregnant with my 3rd child and sent me to her dermatologist (she had melanoma herself 10 years prior).  Biopsy and WLE (done July 26th) were clear.  Since then had 7 additional moles removed and all have been mildly atypical.  

                                                Baby was born the first week in August.  What was really frustrating was that the doctors could not agree on when to do the WLE (with baby in tummy or after I had delivered or if I should be induced between OB/High Risk/Derm) to the point I put my foot down and told them I wanted the surgery done before delivery.

                                                So you are having chest xrays at MDA?  No one has mentioned this to me or told me it is even an option.

                                                I live in Virginia Beach and do not know if there is an melanoma specialist in the area – guess it can't hurt to have that information so if anyone can recommend a group …that would be great.

                                                Since mole mapping is not available in the area I had professional photographs taken of my body yesterday and just learned of some moles I did not know I had (from the photos).  

                                                Does anyone know how quickly a new mole can form and metatisize? (is 3 months a safe timeframe between appointments)?

                                                I know we are looking for 'changes' in the moles but what about those moles I've had for ages that could be melanoma, how do I know I don't already have it somewhere else on my body?  I have a lot of abnormal looking moles.

                                                Also, I'm a bit concerned as some light brown pigment is returning where the melanoma was around my 'sharkbite' or WLE scar.  The melanoma was super dark, like black so I don't know if I should be concerned about light brown pigment returning.

                                                Keep me posted…Ash

                                                ashley_k
                                                Participant

                                                  Hi!,

                                                  Yes, this news has sort of set me into a tailspin.  July 1st I was diagnosed with Stage 1A melanoma at 35 weeks pregnant.  I had the mole for years and it appeared after I had my 2nd kid (I believe back in 2010) – and had a dermatologist look at it in 2013 who told me not to worry about it (it was on my stomach).  

                                                  An OB saw it mid June 2015 when I was pregnant with my 3rd child and sent me to her dermatologist (she had melanoma herself 10 years prior).  Biopsy and WLE (done July 26th) were clear.  Since then had 7 additional moles removed and all have been mildly atypical.  

                                                  Baby was born the first week in August.  What was really frustrating was that the doctors could not agree on when to do the WLE (with baby in tummy or after I had delivered or if I should be induced between OB/High Risk/Derm) to the point I put my foot down and told them I wanted the surgery done before delivery.

                                                  So you are having chest xrays at MDA?  No one has mentioned this to me or told me it is even an option.

                                                  I live in Virginia Beach and do not know if there is an melanoma specialist in the area – guess it can't hurt to have that information so if anyone can recommend a group …that would be great.

                                                  Since mole mapping is not available in the area I had professional photographs taken of my body yesterday and just learned of some moles I did not know I had (from the photos).  

                                                  Does anyone know how quickly a new mole can form and metatisize? (is 3 months a safe timeframe between appointments)?

                                                  I know we are looking for 'changes' in the moles but what about those moles I've had for ages that could be melanoma, how do I know I don't already have it somewhere else on my body?  I have a lot of abnormal looking moles.

                                                  Also, I'm a bit concerned as some light brown pigment is returning where the melanoma was around my 'sharkbite' or WLE scar.  The melanoma was super dark, like black so I don't know if I should be concerned about light brown pigment returning.

                                                  Keep me posted…Ash

                                                  WithinMySkin
                                                  Participant

                                                    I was JUST talking with my onc's NP yesterday and she mentioned a link between estrogen and Melanoma. She said that higher levels of estrogen feed melanoma, thus making it more aggressive. She also stated that women with breast cancer have a higher rate of developing melanoma, but that the link hasn't been shown to go both ways (so we have the same chances of breast cancer with melanoma). 

                                                    With this in mind, you might want to follow protocols for estrogen-linked breast cancer. Avoid estrogens and phytoestrogens like soy, flax, conventional dairy and some birth controls. These changes surely woudn't hurt!

                                                    I haven't read the article you mention – could you post it? I've been taking flax seeds as an Omega-3 supplement, and now this has my interest peaked. Thank you and hope all is well!

                                                    WithinMySkin
                                                    Participant

                                                      I was JUST talking with my onc's NP yesterday and she mentioned a link between estrogen and Melanoma. She said that higher levels of estrogen feed melanoma, thus making it more aggressive. She also stated that women with breast cancer have a higher rate of developing melanoma, but that the link hasn't been shown to go both ways (so we have the same chances of breast cancer with melanoma). 

                                                      With this in mind, you might want to follow protocols for estrogen-linked breast cancer. Avoid estrogens and phytoestrogens like soy, flax, conventional dairy and some birth controls. These changes surely woudn't hurt!

                                                      I haven't read the article you mention – could you post it? I've been taking flax seeds as an Omega-3 supplement, and now this has my interest peaked. Thank you and hope all is well!

                                                      WithinMySkin
                                                      Participant

                                                        I was JUST talking with my onc's NP yesterday and she mentioned a link between estrogen and Melanoma. She said that higher levels of estrogen feed melanoma, thus making it more aggressive. She also stated that women with breast cancer have a higher rate of developing melanoma, but that the link hasn't been shown to go both ways (so we have the same chances of breast cancer with melanoma). 

                                                        With this in mind, you might want to follow protocols for estrogen-linked breast cancer. Avoid estrogens and phytoestrogens like soy, flax, conventional dairy and some birth controls. These changes surely woudn't hurt!

                                                        I haven't read the article you mention – could you post it? I've been taking flax seeds as an Omega-3 supplement, and now this has my interest peaked. Thank you and hope all is well!

                                                          OkieJen
                                                          Participant

                                                            Here is the link to the article you asked for:

                                                            Cleveland clinic finds pregnancy-associated melanoma is associated with higher death rates

                                                            http://medicalxpress.com/news/2016-01-cleveland-clinic-pregnancy-associated-melanoma-higher.html

                                                            OkieJen
                                                            Participant

                                                              Here is the link to the article you asked for:

                                                              Cleveland clinic finds pregnancy-associated melanoma is associated with higher death rates

                                                              http://medicalxpress.com/news/2016-01-cleveland-clinic-pregnancy-associated-melanoma-higher.html

                                                              OkieJen
                                                              Participant

                                                                Here is the link to the article you asked for:

                                                                Cleveland clinic finds pregnancy-associated melanoma is associated with higher death rates

                                                                http://medicalxpress.com/news/2016-01-cleveland-clinic-pregnancy-associated-melanoma-higher.html

                                                                OkieJen
                                                                Participant

                                                                  My dermatologist did tell me about the link to breast cancer. Thankfully I don't eat soy (I am from Oklahoma. We eat meat. Ha!) . I didn't know about flax. I do put that in my smoothies. I won't be using that from now on. I might start buying organic milk too. Thanks for that heads up!

                                                                  OkieJen
                                                                  Participant

                                                                    My dermatologist did tell me about the link to breast cancer. Thankfully I don't eat soy (I am from Oklahoma. We eat meat. Ha!) . I didn't know about flax. I do put that in my smoothies. I won't be using that from now on. I might start buying organic milk too. Thanks for that heads up!

                                                                    DZnDef
                                                                    Participant

                                                                      I would argue that raw milk is preferable to organic (and organic raw milk the best).  It's got good enzymes in it that are destroyed by the pasteurization process.

                                                                      DZnDef
                                                                      Participant

                                                                        I would argue that raw milk is preferable to organic (and organic raw milk the best).  It's got good enzymes in it that are destroyed by the pasteurization process.

                                                                        DZnDef
                                                                        Participant

                                                                          I would argue that raw milk is preferable to organic (and organic raw milk the best).  It's got good enzymes in it that are destroyed by the pasteurization process.

                                                                          OkieJen
                                                                          Participant

                                                                            My dermatologist did tell me about the link to breast cancer. Thankfully I don't eat soy (I am from Oklahoma. We eat meat. Ha!) . I didn't know about flax. I do put that in my smoothies. I won't be using that from now on. I might start buying organic milk too. Thanks for that heads up!

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