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Recurrence – 18+ spots

Forums General Melanoma Community Recurrence – 18+ spots

  • Post
    LizzieWA
    Participant

      My mom has been diagnosed with Stage 3C melanoma (6 lymph nodes affected, one extracapsular extension).  She had surgery, lymph node removal and radiation on the lymphs.  The original site never healed from the surgery (6 mos + ago).  Recently, little black spots started popping up between the original site and the lymph nodes.  At least 18 of them. We learned they are melanoma.  What does this mean for her? 

      My mom has been diagnosed with Stage 3C melanoma (6 lymph nodes affected, one extracapsular extension).  She had surgery, lymph node removal and radiation on the lymphs.  The original site never healed from the surgery (6 mos + ago).  Recently, little black spots started popping up between the original site and the lymph nodes.  At least 18 of them. We learned they are melanoma.  What does this mean for her? 

    Viewing 7 reply threads
    • Replies
        bcl
        Participant

          If I were her I would do some sort of systemic treatment, I know that sounds terrifying but if you read some of the other posts you will see many success stories. For this your mom should seek out the best melanoma specialists. If you need help with this please post her location, there is a lot of experience here.

            LizzieWA
            Participant

              Thank you for your response.  She is being offered chemotherapy (after a CAT), but she's nervous about it, having had post-surgical and radiation complications.  She's in Canada (but the family is in the US), so once we get the scans back, maybe we can look at clinical trials in the US.  Thank you for the encouragement.  I'll look for the success stories.  

              bcl
              Participant

                Hi, I answered you post anon as I am an early stager.. hoped some of the others with experience would chime in.. but there is a lot going on right now.  We have Canadians here ( I am one too:)  Please let us know if we can direct your mom to a melanoma specialist… here in BC we have no melanoma specialists and regularly refer posters to the Cross Cancer institute in Edmonton. Some of the treatments are easier to take than others, people here can help your mom with that. If you prefer to remain anon let me know and I will give you my email, just remember, the more you share the more others can help:) take care, linda

                LizzieWA
                Participant

                  Hi Linda, and thank you.  If you can refer us to someone in Edmonton, and if that is where i can find a melanoma specialist, that would be much appreciated.  My mom is in BC, too.  She has worked with some lovely people, but not a melanoma specialist.  If anyone can share more about treatments that are easier to handle, I would greatly appreciate it.  Thanks for the kind and helpful words.  

                  I don't know if it matters, but the lesions appeared a week ago and have grown from a pinprick to a mole size in that time.  Every day there are more of them.  Today, maybe 5 more than yesterday. 

                  bcl
                  Participant

                    Hi Lizzie, Doctor Smylie in Edmonton is who I would recommend without hesitation..  I will give you his contact info below. He is a great doctor and takes a real interest in his patients. Your mom will love him:)  Val mentioned ipi,  I'm sure he will have the compassionate access by now, as he thought back in April it would only be another 4 – 6 weeks. 

                     

                     

                    http://www.oncology.med.ualberta.ca/faculty/facultymember.cfm?id=60

                     

                    Research Interests

                    • Melanoma and Lung Cancers
                    • Site Leader – Clinical Trials Committee – Cross Cancer Institute NCIC Melanoma Group Leader and very active in designing and participating in malignant melanoma
                    • Targeted therapy and new drug development in metastatic melanoma
                    • He has chaired several National Melanoma Meetings and organized the past three National Melanoma Conferences in Canada
                    • Chair – Mary Johnston Professorship in Melanoma Research – 2006-2007. This is a $1,000,000 donation from the Mary Johnston family and the Alberta Government through their endowment fund has guaranteed to match this contribution dollar for dollar. In recognition of this patient and her family, Cross Cancer Institute has created the endowed Mary Johnston Professorship in melanoma research. In October of 2007, Dr. Alan Underhill, Department of Medical Genetics of the University of Alberta took over the Chair Position of this Professorship. Dr. Underhill and Dr. Smylie are keen in objectives in basic research to identify targets in melanoma. This is the first research in this field in Canada.
                    bcl
                    Participant

                      Hi Lizzie, Doctor Smylie in Edmonton is who I would recommend without hesitation..  I will give you his contact info below. He is a great doctor and takes a real interest in his patients. Your mom will love him:)  Val mentioned ipi,  I'm sure he will have the compassionate access by now, as he thought back in April it would only be another 4 – 6 weeks. 

                       

                       

                      http://www.oncology.med.ualberta.ca/faculty/facultymember.cfm?id=60

                       

                      Research Interests

                      • Melanoma and Lung Cancers
                      • Site Leader – Clinical Trials Committee – Cross Cancer Institute NCIC Melanoma Group Leader and very active in designing and participating in malignant melanoma
                      • Targeted therapy and new drug development in metastatic melanoma
                      • He has chaired several National Melanoma Meetings and organized the past three National Melanoma Conferences in Canada
                      • Chair – Mary Johnston Professorship in Melanoma Research – 2006-2007. This is a $1,000,000 donation from the Mary Johnston family and the Alberta Government through their endowment fund has guaranteed to match this contribution dollar for dollar. In recognition of this patient and her family, Cross Cancer Institute has created the endowed Mary Johnston Professorship in melanoma research. In October of 2007, Dr. Alan Underhill, Department of Medical Genetics of the University of Alberta took over the Chair Position of this Professorship. Dr. Underhill and Dr. Smylie are keen in objectives in basic research to identify targets in melanoma. This is the first research in this field in Canada.
                      LizzieWA
                      Participant

                        Hi Linda, and thank you.  If you can refer us to someone in Edmonton, and if that is where i can find a melanoma specialist, that would be much appreciated.  My mom is in BC, too.  She has worked with some lovely people, but not a melanoma specialist.  If anyone can share more about treatments that are easier to handle, I would greatly appreciate it.  Thanks for the kind and helpful words.  

                        I don't know if it matters, but the lesions appeared a week ago and have grown from a pinprick to a mole size in that time.  Every day there are more of them.  Today, maybe 5 more than yesterday. 

                        bcl
                        Participant

                          Hi, I answered you post anon as I am an early stager.. hoped some of the others with experience would chime in.. but there is a lot going on right now.  We have Canadians here ( I am one too:)  Please let us know if we can direct your mom to a melanoma specialist… here in BC we have no melanoma specialists and regularly refer posters to the Cross Cancer institute in Edmonton. Some of the treatments are easier to take than others, people here can help your mom with that. If you prefer to remain anon let me know and I will give you my email, just remember, the more you share the more others can help:) take care, linda

                          LizzieWA
                          Participant

                            Thank you for your response.  She is being offered chemotherapy (after a CAT), but she's nervous about it, having had post-surgical and radiation complications.  She's in Canada (but the family is in the US), so once we get the scans back, maybe we can look at clinical trials in the US.  Thank you for the encouragement.  I'll look for the success stories.  

                          bcl
                          Participant

                            If I were her I would do some sort of systemic treatment, I know that sounds terrifying but if you read some of the other posts you will see many success stories. For this your mom should seek out the best melanoma specialists. If you need help with this please post her location, there is a lot of experience here.

                            ValinMtl
                            Participant

                              This sounds very similar to what has happened to me.  After several surgeries plus radiation (February), I noticed several little black spots on my upper thigh in March.  After biopsy…dermatologist at that time told me that if I had been anybody else but a melanoma survivor she wouldn't be worried..it had returned.  The spots have multiplied…I now have over 100 from March to August..diagnosed with regional melanoma in April and considered stage IV due to numbers. 

                              In a later response, you mention she will be having chemotherapy.  After my recurrence, I was tested for the B-RAF mutation which I did not have so could not participate with that trial and was not accepted for IL-21 because of the size of my lesions (too small).  I would have preferred to do one of them as a first option but….

                              I did temodar  (oral chemotherapy) which is less harsh and seems to have a better response (although you never know, everybody is different). It cost $4,000 for week's supply, 90% covered by my husband's private insurance through his company. In Quebec, the government medicare only covers dicarbazine except for rare exceptions.  I did only one month since I showed absolutely no response and continued growth, I will now be on the compassionate ipilimumab trial which has finally arrived in Montreal after scans next week. Check to see if this trial is offered in Edmonton…be careful, you DO NOT want the ipi/placebo trial but rather the 'compassionate ipi' where everybody has the opportunity to participate.

                              Never give up…my oncologist told me that he has had one case similar to mine…patient was on the earlier ipi/placebo trial and fortunately received the 'ipi'…her spots disappeared completely…there is always hope!

                              I read quite regularly here that Dr. Smylie at the Cross Cancer Institute is wonderful and compassionate!  All the best, and if you have any questions please don't hesitate to contact me.  Val

                              ValinMtl
                              Participant

                                This sounds very similar to what has happened to me.  After several surgeries plus radiation (February), I noticed several little black spots on my upper thigh in March.  After biopsy…dermatologist at that time told me that if I had been anybody else but a melanoma survivor she wouldn't be worried..it had returned.  The spots have multiplied…I now have over 100 from March to August..diagnosed with regional melanoma in April and considered stage IV due to numbers. 

                                In a later response, you mention she will be having chemotherapy.  After my recurrence, I was tested for the B-RAF mutation which I did not have so could not participate with that trial and was not accepted for IL-21 because of the size of my lesions (too small).  I would have preferred to do one of them as a first option but….

                                I did temodar  (oral chemotherapy) which is less harsh and seems to have a better response (although you never know, everybody is different). It cost $4,000 for week's supply, 90% covered by my husband's private insurance through his company. In Quebec, the government medicare only covers dicarbazine except for rare exceptions.  I did only one month since I showed absolutely no response and continued growth, I will now be on the compassionate ipilimumab trial which has finally arrived in Montreal after scans next week. Check to see if this trial is offered in Edmonton…be careful, you DO NOT want the ipi/placebo trial but rather the 'compassionate ipi' where everybody has the opportunity to participate.

                                Never give up…my oncologist told me that he has had one case similar to mine…patient was on the earlier ipi/placebo trial and fortunately received the 'ipi'…her spots disappeared completely…there is always hope!

                                I read quite regularly here that Dr. Smylie at the Cross Cancer Institute is wonderful and compassionate!  All the best, and if you have any questions please don't hesitate to contact me.  Val

                                JoanR
                                Participant

                                  I am so sorry to hear about your Mother. I, too, am in BC, Victoria to be exact. There are no melanoma specialists in BC, if you can get your Mother to Dr.Smylie that would be wonderful, phone and talk to his office first. If you need numbers, etc, just post here and we can give you all the information you need. Where in BC are you? If you are on the coast, then Dr.Thompson in Seattle at Fred Hitchinson is another fabulous mel specialist. DId your Mother have a SNB? So many questions,  please don't feel intimidated with the folks here, this is a credible site and I have been here for 10 years…this is the best place for good solid ,current, reiable information and support..I wish you well, and remember we are here to help…Joan R

                                  JoanR
                                  Participant

                                    I am so sorry to hear about your Mother. I, too, am in BC, Victoria to be exact. There are no melanoma specialists in BC, if you can get your Mother to Dr.Smylie that would be wonderful, phone and talk to his office first. If you need numbers, etc, just post here and we can give you all the information you need. Where in BC are you? If you are on the coast, then Dr.Thompson in Seattle at Fred Hitchinson is another fabulous mel specialist. DId your Mother have a SNB? So many questions,  please don't feel intimidated with the folks here, this is a credible site and I have been here for 10 years…this is the best place for good solid ,current, reiable information and support..I wish you well, and remember we are here to help…Joan R

                                    LizzieWA
                                    Participant

                                      I'll call Dr.  Smylie on Monday.  This is really fabulous information.  My mom did have an SNB (sentinol node biopsy?) and it was positive for melanoma (1.3 cm tumor, extracapsular extension).  5 of 9 nodes were positive with evidence of in-transit mets.  Last night, she found 25 more spots on her chest (the original lesion was on her foot), so it looks like the lesions are spreading quickly and are no longer just confined to her leg.  She is very scared.  She also has a sizable lump in her leg under the skin.  The original lesion was Breslow Level V, if I remember correctly; it had been an open wound for 8 months before a Dr finally biopsied it and started us down this path.  

                                      This is all very scary, but hearing your proactive solutions and success stories is incredibly helpful and makes the next journey sound manageable.  Thank you for your generosity.  I will absolutely call Dr. Smylie on Monday.

                                      I should also say that we've paid for a few consults at Fred Hutchinson.  Perhaps that will be a good option as well (although expensive).  I am on the East Coast, so I'll also call NIH. 

                                      Thank you.

                                        ValinMtl
                                        Participant

                                          Hi Lizzie,

                                          One more thing…in order to participate in the compassionate ipi trial, you must have taken an earlier stage IV drug and failed…so dicarbazine is one, if she starts there first.  As I said, I took temodar, expensive but easier on the system..both have 20% success rate…hey, somebody has got to be in that number…it could be your mom…Best, Val

                                          ValinMtl
                                          Participant

                                            Hi Lizzie,

                                            One more thing…in order to participate in the compassionate ipi trial, you must have taken an earlier stage IV drug and failed…so dicarbazine is one, if she starts there first.  As I said, I took temodar, expensive but easier on the system..both have 20% success rate…hey, somebody has got to be in that number…it could be your mom…Best, Val

                                            JoanR
                                            Participant

                                              Hi Lzzie, so pleased so many have pitched in with information..and that you found this site in the first place. Has your Mother even seen an oncologist in BC? The system is quite differnet here than in the states, you see your GP for Dx, then a surgeen, then after pathology, usually will be sent to the cancer agency to see if they can do chemo or radiation. If neither are appropriate, then you are usually turned back over to your GP for management. The system does not provide adequate care or attention for cancer parients, just treatment. The fact there are no Mel specialists here doesn't help either. There is an oncologist who works independently in Vancouver at Lion's Gate Hospital..Dr.Klimo..many people see him when they are not satified with the BC cancer agency. It is great you have stepped in as an advocate for your Mother…you need to be strong and assertive and don't take "no ", or "wait and see" for answers.  Please keep in touch with this bulletin board. Please use Kathy Barnard's name when talking to Dr.Smylie..that will get you some attention. She is a Vancouver mel paitient who sees Smylie and he takes her to seminars etc, She has a great mel  survival story..don't give up hope..but you are going to have to work diligently and quickly to get some attention for your Mother…Cheers Joan

                                              JoanR
                                              Participant

                                                Hi Lzzie, so pleased so many have pitched in with information..and that you found this site in the first place. Has your Mother even seen an oncologist in BC? The system is quite differnet here than in the states, you see your GP for Dx, then a surgeen, then after pathology, usually will be sent to the cancer agency to see if they can do chemo or radiation. If neither are appropriate, then you are usually turned back over to your GP for management. The system does not provide adequate care or attention for cancer parients, just treatment. The fact there are no Mel specialists here doesn't help either. There is an oncologist who works independently in Vancouver at Lion's Gate Hospital..Dr.Klimo..many people see him when they are not satified with the BC cancer agency. It is great you have stepped in as an advocate for your Mother…you need to be strong and assertive and don't take "no ", or "wait and see" for answers.  Please keep in touch with this bulletin board. Please use Kathy Barnard's name when talking to Dr.Smylie..that will get you some attention. She is a Vancouver mel paitient who sees Smylie and he takes her to seminars etc, She has a great mel  survival story..don't give up hope..but you are going to have to work diligently and quickly to get some attention for your Mother…Cheers Joan

                                                bcl
                                                Participant

                                                  Hi Lizzie, at least the consult with Dr Smylie is free… just have her get a referral from her regular doctor if she does not want to ask her oncologist.. I did that and only had to pay for the airfare. The Cross has names of hotels that provide discounts to cancer patients (pick one with a shuttle bus service to and from the airport). Once mom gets to the hospital she will find a vast army of volunteer drivers who drive patients where they need to go. Let us know how it goes.. and good luck!! linda

                                                  paul
                                                  Participant

                                                    Just a thought. If the spots are confined to the surface of the skin, you might consult with your oncologist and/or dermatologist about the possibility of benefitting from Aldera cream. I have been using it for a few months on my face, and it seems (at this point) to have helped.

                                                    paul
                                                    Participant

                                                      Just a thought. If the spots are confined to the surface of the skin, you might consult with your oncologist and/or dermatologist about the possibility of benefitting from Aldera cream. I have been using it for a few months on my face, and it seems (at this point) to have helped.

                                                      bcl
                                                      Participant

                                                        Hi Lizzie, at least the consult with Dr Smylie is free… just have her get a referral from her regular doctor if she does not want to ask her oncologist.. I did that and only had to pay for the airfare. The Cross has names of hotels that provide discounts to cancer patients (pick one with a shuttle bus service to and from the airport). Once mom gets to the hospital she will find a vast army of volunteer drivers who drive patients where they need to go. Let us know how it goes.. and good luck!! linda

                                                      LizzieWA
                                                      Participant

                                                        I'll call Dr.  Smylie on Monday.  This is really fabulous information.  My mom did have an SNB (sentinol node biopsy?) and it was positive for melanoma (1.3 cm tumor, extracapsular extension).  5 of 9 nodes were positive with evidence of in-transit mets.  Last night, she found 25 more spots on her chest (the original lesion was on her foot), so it looks like the lesions are spreading quickly and are no longer just confined to her leg.  She is very scared.  She also has a sizable lump in her leg under the skin.  The original lesion was Breslow Level V, if I remember correctly; it had been an open wound for 8 months before a Dr finally biopsied it and started us down this path.  

                                                        This is all very scary, but hearing your proactive solutions and success stories is incredibly helpful and makes the next journey sound manageable.  Thank you for your generosity.  I will absolutely call Dr. Smylie on Monday.

                                                        I should also say that we've paid for a few consults at Fred Hutchinson.  Perhaps that will be a good option as well (although expensive).  I am on the East Coast, so I'll also call NIH. 

                                                        Thank you.

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