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Stage IIIa diagnosis in Canada

Forums General Melanoma Community Stage IIIa diagnosis in Canada

  • Post
    slouttit
    Participant

      I was diagnosed as stage IIIa in early 2016 with a 1.5MM primary on the ear tip, no ulceration, 4/sq mm mitatic rate.  After a removal and SNLB, 2 of 5 nodes had micrometatasis (.65 and .7mm).  I then had a CNLD of the neck and all 50+ nodes were clear. 

      I entered the interferon/pembro clinical trial and drew the interferon arm.  I only lasted one week on interferon but am still being watched closely.  My July CT and PetScan came back clear.  My next CT is scheduled for Nov 17. I have not had an MRI. 

      As Ipi is not yet approved for stage III in Canada, I'm wondering if it worth my while to travel to Seattle for treatment with IPI?  Any thoughts?  iF so, who should I see in Seattle?

      Also, I've been having mild headaches for the past two months.  At my last appointment with my oncologist he thought this was not a problem as I would find the headaches getting worse.  However, the headaches keep coming. I will see my oncologist next week and will ask if I should have a brain MRI.  I also will see my eye doctor as  hopefully the headaches are related to vision changes.  Otherwise, I feel fine. 

      Thanks for your support and advice. 

      Stacie

       

    Viewing 11 reply threads
    • Replies
        jennunicorn
        Participant

          A brain MRI is standard for staging melanoma patients in the US and to get a base line image of a patient's brain for future MRI's. It should be standard in CA, if not, then definitely request one. There should be no guessing when it comes to the brain. Your headaches may have nothing to do with brain mets or anything dangerous, but there's no reason to wait and see on that. 

          jennunicorn
          Participant

            A brain MRI is standard for staging melanoma patients in the US and to get a base line image of a patient's brain for future MRI's. It should be standard in CA, if not, then definitely request one. There should be no guessing when it comes to the brain. Your headaches may have nothing to do with brain mets or anything dangerous, but there's no reason to wait and see on that. 

              SOLE
              Participant

                Dear Jenn,

                I cannot agree more with you! But my docs tell me that the US docs order too many scans and that they get a financial reward esch time they do. Same with the meds. 

                I am desperately seeking a doctor here who would be willing to get me an MRI and a CT. I am willing to pay for it but the protocol here says it has to be ordered from your treating oncologist. So I am trying to change my whole medical team and start clear. It's really tiresome that we have to advocate for ourselves… I could really get some help from the medical profession 

                SOLE
                Participant

                  Dear Jenn,

                  I cannot agree more with you! But my docs tell me that the US docs order too many scans and that they get a financial reward esch time they do. Same with the meds. 

                  I am desperately seeking a doctor here who would be willing to get me an MRI and a CT. I am willing to pay for it but the protocol here says it has to be ordered from your treating oncologist. So I am trying to change my whole medical team and start clear. It's really tiresome that we have to advocate for ourselves… I could really get some help from the medical profession 

                  jennunicorn
                  Participant

                    It's unfortunate that a brain MRI is not standard where you are, very frustrating as many on here would say a routine brain MRI helped save their life, since there are not always symptoms of brain mets or mets in general.

                    Have you never had a full body CT scan? 

                    jennunicorn
                    Participant

                      It's unfortunate that a brain MRI is not standard where you are, very frustrating as many on here would say a routine brain MRI helped save their life, since there are not always symptoms of brain mets or mets in general.

                      Have you never had a full body CT scan? 

                      SOLE
                      Participant

                        Had a full bodt PET/CT in August. plus another chest CT. All negative then. Its been three months and I just about loose it now

                        SOLE
                        Participant

                          Had a full bodt PET/CT in August. plus another chest CT. All negative then. Its been three months and I just about loose it now

                          jennunicorn
                          Participant

                            Ok good. They don't do the 3 month scan interval for the first year there?

                            jennunicorn
                            Participant

                              Ok good. They don't do the 3 month scan interval for the first year there?

                              SOLE
                              Participant

                                No!!!!! Am scheduled to have next scan March 2017… Hoping to be transferred to new medical center with a better team and hoping to be able to do CT and MRI of brain…

                                SOLE
                                Participant

                                  No!!!!! Am scheduled to have next scan March 2017… Hoping to be transferred to new medical center with a better team and hoping to be able to do CT and MRI of brain…

                                  jennunicorn
                                  Participant

                                    So sorry you're having a hard time getting what you want as a patient, I've been there before with a previous health insurance company in the states. I hope you do find a great center so you can get the care that will make you feel more confident in your medical team.

                                     

                                    jennunicorn
                                    Participant

                                      So sorry you're having a hard time getting what you want as a patient, I've been there before with a previous health insurance company in the states. I hope you do find a great center so you can get the care that will make you feel more confident in your medical team.

                                       

                                      jennunicorn
                                      Participant

                                        So sorry you're having a hard time getting what you want as a patient, I've been there before with a previous health insurance company in the states. I hope you do find a great center so you can get the care that will make you feel more confident in your medical team.

                                         

                                        SOLE
                                        Participant

                                          No!!!!! Am scheduled to have next scan March 2017… Hoping to be transferred to new medical center with a better team and hoping to be able to do CT and MRI of brain…

                                          jennunicorn
                                          Participant

                                            Ok good. They don't do the 3 month scan interval for the first year there?

                                            SOLE
                                            Participant

                                              Had a full bodt PET/CT in August. plus another chest CT. All negative then. Its been three months and I just about loose it now

                                              jennunicorn
                                              Participant

                                                It's unfortunate that a brain MRI is not standard where you are, very frustrating as many on here would say a routine brain MRI helped save their life, since there are not always symptoms of brain mets or mets in general.

                                                Have you never had a full body CT scan? 

                                                SOLE
                                                Participant

                                                  Dear Jenn,

                                                  I cannot agree more with you! But my docs tell me that the US docs order too many scans and that they get a financial reward esch time they do. Same with the meds. 

                                                  I am desperately seeking a doctor here who would be willing to get me an MRI and a CT. I am willing to pay for it but the protocol here says it has to be ordered from your treating oncologist. So I am trying to change my whole medical team and start clear. It's really tiresome that we have to advocate for ourselves… I could really get some help from the medical profession 

                                                jennunicorn
                                                Participant

                                                  A brain MRI is standard for staging melanoma patients in the US and to get a base line image of a patient's brain for future MRI's. It should be standard in CA, if not, then definitely request one. There should be no guessing when it comes to the brain. Your headaches may have nothing to do with brain mets or anything dangerous, but there's no reason to wait and see on that. 

                                                  SOLE
                                                  Participant

                                                    Hi Stacey

                                                    I am from Montreal and was diagnosed last summer Stage 3b. I hope your part of the health system is better than ours in Quebec. Just awful here. 7 weeks elapsed between my derm first biopsy and my WLE and SLNB.

                                                    As for adjuvant ipi for us, it's outrageous not having it. But tell me, unless you are wealhty – which is fine – or you have some connections overthere, how would you get ipi in the states?

                                                    Let me know because I would be very interested in getting ipi myself!

                                                    Best wishes

                                                    SOLE
                                                    Participant

                                                      Hi Stacey

                                                      I am from Montreal and was diagnosed last summer Stage 3b. I hope your part of the health system is better than ours in Quebec. Just awful here. 7 weeks elapsed between my derm first biopsy and my WLE and SLNB.

                                                      As for adjuvant ipi for us, it's outrageous not having it. But tell me, unless you are wealhty – which is fine – or you have some connections overthere, how would you get ipi in the states?

                                                      Let me know because I would be very interested in getting ipi myself!

                                                      Best wishes

                                                        slouttit
                                                        Participant

                                                          Hi Sole

                                                          My wait time before WLE and SNLB was closer to 10 weeks.  However my surgeon was excellent.  As for US treatment I'm assuming it would be out of pocket and prohibitively expensive.  I'm not even sure IPI is right for  me as I hear some US oncologists are reluctant to prescribe  it.  But worth looking into.

                                                          stacie

                                                          slouttit
                                                          Participant

                                                            Hi Sole

                                                            My wait time before WLE and SNLB was closer to 10 weeks.  However my surgeon was excellent.  As for US treatment I'm assuming it would be out of pocket and prohibitively expensive.  I'm not even sure IPI is right for  me as I hear some US oncologists are reluctant to prescribe  it.  But worth looking into.

                                                            stacie

                                                            slouttit
                                                            Participant

                                                              Hi Sole

                                                              My wait time before WLE and SNLB was closer to 10 weeks.  However my surgeon was excellent.  As for US treatment I'm assuming it would be out of pocket and prohibitively expensive.  I'm not even sure IPI is right for  me as I hear some US oncologists are reluctant to prescribe  it.  But worth looking into.

                                                              stacie

                                                              jennunicorn
                                                              Participant

                                                                Just to give you a price idea, whenever I got the bill after an infusion (I did Ipi at 10mg/kg for stage 3 adjuvant treatment) it showed the pharmacy charge which is $198,533 for 1 infusion. I didn't pay a penny of it, but without insurance and help from the pharmacutical company there's no way I could even attempt. 

                                                                jennunicorn
                                                                Participant

                                                                  Just to give you a price idea, whenever I got the bill after an infusion (I did Ipi at 10mg/kg for stage 3 adjuvant treatment) it showed the pharmacy charge which is $198,533 for 1 infusion. I didn't pay a penny of it, but without insurance and help from the pharmacutical company there's no way I could even attempt. 

                                                                  jennunicorn
                                                                  Participant

                                                                    Just to give you a price idea, whenever I got the bill after an infusion (I did Ipi at 10mg/kg for stage 3 adjuvant treatment) it showed the pharmacy charge which is $198,533 for 1 infusion. I didn't pay a penny of it, but without insurance and help from the pharmacutical company there's no way I could even attempt. 

                                                                  SOLE
                                                                  Participant

                                                                    Hi Stacey

                                                                    I am from Montreal and was diagnosed last summer Stage 3b. I hope your part of the health system is better than ours in Quebec. Just awful here. 7 weeks elapsed between my derm first biopsy and my WLE and SLNB.

                                                                    As for adjuvant ipi for us, it's outrageous not having it. But tell me, unless you are wealhty – which is fine – or you have some connections overthere, how would you get ipi in the states?

                                                                    Let me know because I would be very interested in getting ipi myself!

                                                                    Best wishes

                                                                    lmccann2016
                                                                    Participant
                                                                      Hi Stacey did u have removal of nodes in neck neck disection. If so how was healing. I am swollen pretty bad left side and ts hard. No fever but my neck is tight and when I touch my neck it feels hard as rock. Will this improve I am only 5 days after surgery
                                                                      lmccann2016
                                                                      Participant
                                                                        Hi Stacey did u have removal of nodes in neck neck disection. If so how was healing. I am swollen pretty bad left side and ts hard. No fever but my neck is tight and when I touch my neck it feels hard as rock. Will this improve I am only 5 days after surgery
                                                                          slouttit
                                                                          Participant

                                                                            Hi Lisa,

                                                                            About 5 days after my cold my neck started to swell.  My surgeon put me on antibiotics for good measure.  It took a long time to look normal again but it did happen.  I also had shoulder weakness.  Now after 5 months it is much better.  I recommend finding a good PT.  Hang in there.

                                                                            Stacie

                                                                            slouttit
                                                                            Participant

                                                                              Hi Lisa,

                                                                              About 5 days after my cold my neck started to swell.  My surgeon put me on antibiotics for good measure.  It took a long time to look normal again but it did happen.  I also had shoulder weakness.  Now after 5 months it is much better.  I recommend finding a good PT.  Hang in there.

                                                                              Stacie

                                                                              slouttit
                                                                              Participant

                                                                                Hi Lisa,

                                                                                About 5 days after my cold my neck started to swell.  My surgeon put me on antibiotics for good measure.  It took a long time to look normal again but it did happen.  I also had shoulder weakness.  Now after 5 months it is much better.  I recommend finding a good PT.  Hang in there.

                                                                                Stacie

                                                                                slouttit
                                                                                Participant

                                                                                  I meant to say CNLD. Not cold.

                                                                                  slouttit
                                                                                  Participant

                                                                                    I meant to say CNLD. Not cold.

                                                                                    slouttit
                                                                                    Participant

                                                                                      I meant to say CNLD. Not cold.

                                                                                    lmccann2016
                                                                                    Participant
                                                                                      Hi Stacey did u have removal of nodes in neck neck disection. If so how was healing. I am swollen pretty bad left side and ts hard. No fever but my neck is tight and when I touch my neck it feels hard as rock. Will this improve I am only 5 days after surgery
                                                                                      bcl
                                                                                      Participant

                                                                                        Hi Stacie, have you connected with Kathy Barnard over in Vancouver at the Save Your Skin Foundation? She is a long time stage 4 survivor and is a wealth of information. 

                                                                                        If I read your profile correctly it looks like you live in Victoria. If Dr Bernstein is still an oncologist there I've heard she acts on patient concerns and moves with the times. Kathy would have better info though. 

                                                                                        Dr Smiley in Edmonton is marvellous. 

                                                                                         

                                                                                         

                                                                                         

                                                                                        bcl
                                                                                        Participant

                                                                                          Hi Stacie, have you connected with Kathy Barnard over in Vancouver at the Save Your Skin Foundation? She is a long time stage 4 survivor and is a wealth of information. 

                                                                                          If I read your profile correctly it looks like you live in Victoria. If Dr Bernstein is still an oncologist there I've heard she acts on patient concerns and moves with the times. Kathy would have better info though. 

                                                                                          Dr Smiley in Edmonton is marvellous. 

                                                                                           

                                                                                           

                                                                                           

                                                                                            slouttit
                                                                                            Participant

                                                                                              Thanks for that. I will contact Kathy.   I did see Dr. Smiley in a June and he was excellent.  However he could only offer me a clinical trial comparing pembro to placebo?  I decided to go with the Vancouver trial instead but unfortunately drew interferon instead of pembro.  

                                                                                              slouttit
                                                                                              Participant

                                                                                                Thanks for that. I will contact Kathy.   I did see Dr. Smiley in a June and he was excellent.  However he could only offer me a clinical trial comparing pembro to placebo?  I decided to go with the Vancouver trial instead but unfortunately drew interferon instead of pembro.  

                                                                                                slouttit
                                                                                                Participant

                                                                                                  Thanks for that. I will contact Kathy.   I did see Dr. Smiley in a June and he was excellent.  However he could only offer me a clinical trial comparing pembro to placebo?  I decided to go with the Vancouver trial instead but unfortunately drew interferon instead of pembro.  

                                                                                                bcl
                                                                                                Participant

                                                                                                  Hi Stacie, have you connected with Kathy Barnard over in Vancouver at the Save Your Skin Foundation? She is a long time stage 4 survivor and is a wealth of information. 

                                                                                                  If I read your profile correctly it looks like you live in Victoria. If Dr Bernstein is still an oncologist there I've heard she acts on patient concerns and moves with the times. Kathy would have better info though. 

                                                                                                  Dr Smiley in Edmonton is marvellous. 

                                                                                                   

                                                                                                   

                                                                                                   

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