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Ok running out of options for Mum – why does this have to be so rare?

Forums General Melanoma Community Ok running out of options for Mum – why does this have to be so rare?

  • Post
    Ashykay
    Participant

      Hi all,

      I probably posted on this bulletin about 2 months ago about my Mum.

      Since then she has a full course of radiation on both the large tumour on the L4 of the spine as well as the spot at the top of the leg.

      On Thursday (today is Saturday in Australia) she received her ct-scans. It has been about 6 weeks since the radiation and Mum decided to have her ct-scans early as she started getting a bit of pain back.

      Hi all,

      I probably posted on this bulletin about 2 months ago about my Mum.

      Since then she has a full course of radiation on both the large tumour on the L4 of the spine as well as the spot at the top of the leg.

      On Thursday (today is Saturday in Australia) she received her ct-scans. It has been about 6 weeks since the radiation and Mum decided to have her ct-scans early as she started getting a bit of pain back.

      The scans were not good. Although they didn't reveal any extra spots, it appears the large tumour and the spot on the top of the leg have not been affected by the radiation at all. There may be an indication also that the tumour has grown slightly.

      We're (being Mum, Dad and me) are going to the oncologist on Tuesday. Mum is feeling very negative at the moment which is absolutely heartbreaking for our family.

      BRAF results came back negative….oncologist also has c-kit results but hasn't told us yet which is making us think that it's negative, so Gleevac is probably a no go.

      So basically it's a non-skin related melanoma, no primary (unknown primary) with no c-kit or braf mutation.

      Where to from here? Surgery is still not an option. Dad and I have desperately tried researching options and contacting researchers from the US, China (including Dana Faber etc.), and no-one has replied.

      Feeling very desperate now. Does anyone have any suggestions? Your help would be incredibly appreciated.

      Cheers from Australia,

      Ashley

    Viewing 15 reply threads
    • Replies
        James from Sydney
        Participant

          Hi Ashley 

          Unknown Primaries affect about 7% of the Melanoma population. It is believed that the Primary regressed when the bodies Immune system got rid of it but cells spread before it disappeared. Our son's Melanoma 1st appeared in a face gland.

          i noted from one of your previous posts that you mentioned the Doctors had said the Tumor tested positive for CKIT. If that is the case then Gleevec would be a good option. Yervoy has just been approved in Australia so that could be an option. It was formally known as Ippilimumab. The other new drugs in Trials are E7080 which is available in Australia or Anti PD1, i am not sure if that has started here yet it is a monoclonal antibody like Yervoy but appears to have less side effects.

          If you need other opinions in Australia you could contact Peter McCallum Cancer Centre in Melbourne or The Melanoma Institute Australia in North Sydney. Unfortunately only certain Trials are available at each Institution so when one says we have nothing more to offer you have to enquire at another Institution to see what they have available.

          best wishes

          James

            Ashykay
            Participant

              Hi James,

              Thanks so much for your response. Will definitely look into the treatments you have suggested.

              It's seems so incredibly frustrating in an amazingly wonderful country like Australia that the doctors (and hospitals) don't seem to be keen to talk to each other about a patient….my Dad and I will be seeing the oncologist again tomorrow along with Mum of course, and we will be pushing for whatever we can (we have a plan of attack!). We have all the treatment/location suggestions from this post printed out and ready to go! I will definitely also get in touch with the 2 centres you have recommended.

              Thanks again for your assistance.

              Cheers,

              Ashley

              Ashykay
              Participant

                Hi James,

                Thanks so much for your response. Will definitely look into the treatments you have suggested.

                It's seems so incredibly frustrating in an amazingly wonderful country like Australia that the doctors (and hospitals) don't seem to be keen to talk to each other about a patient….my Dad and I will be seeing the oncologist again tomorrow along with Mum of course, and we will be pushing for whatever we can (we have a plan of attack!). We have all the treatment/location suggestions from this post printed out and ready to go! I will definitely also get in touch with the 2 centres you have recommended.

                Thanks again for your assistance.

                Cheers,

                Ashley

              James from Sydney
              Participant

                Hi Ashley 

                Unknown Primaries affect about 7% of the Melanoma population. It is believed that the Primary regressed when the bodies Immune system got rid of it but cells spread before it disappeared. Our son's Melanoma 1st appeared in a face gland.

                i noted from one of your previous posts that you mentioned the Doctors had said the Tumor tested positive for CKIT. If that is the case then Gleevec would be a good option. Yervoy has just been approved in Australia so that could be an option. It was formally known as Ippilimumab. The other new drugs in Trials are E7080 which is available in Australia or Anti PD1, i am not sure if that has started here yet it is a monoclonal antibody like Yervoy but appears to have less side effects.

                If you need other opinions in Australia you could contact Peter McCallum Cancer Centre in Melbourne or The Melanoma Institute Australia in North Sydney. Unfortunately only certain Trials are available at each Institution so when one says we have nothing more to offer you have to enquire at another Institution to see what they have available.

                best wishes

                James

                MichaelFL
                Participant

                  It states in your profile and in your first post that she is C-KIT positive, now the docs are saying she is not?

                    Ashykay
                    Participant

                      Hi anon – sorry for the confusion – please see the post I wrote this morning clearing this up! 🙂

                      Ashykay
                      Participant

                        Hi anon – sorry for the confusion – please see the post I wrote this morning clearing this up! 🙂

                      MichaelFL
                      Participant

                        It states in your profile and in your first post that she is C-KIT positive, now the docs are saying she is not?

                        Teodora
                        Guest

                          Ashley,

                          Dana Farber have been slow in responding because they were in transition recently-since February they moved to the new Yawkay building-and somewhat still not very organised.

                          Contact Dr.Hodi's /The Melanoma Oncology  Director/ Assistant Natacha Hyacinthe directly on her E-mail:

                           

                          Natacha Hyacinthe
                          Administrative Assistant
                          DF/HCC
                          Dana-Farber Cancer Institute
                          44 Binney Street
                          Boston, MA, 02115
                          Phone: 617-632-4715 Fax: 617-582-7992
                          [email protected] 

                          and she will be able to assist you with arranging an appointment.She is very helpful.

                          Good luck to you and your mom.

                          Teodora

                            Ashykay
                            Participant

                              Hi Teodora – thank you so much for your information. Dad and I have been trying to get in touch with Dr Hodi for a while now.

                              We're located in Australia but we are (and by saying that, my Mum obviously!) more than happy to do whatever it takes to get some action – if that means travelling to the US, so be it!

                              Thanks again for your help, incredibly appreciated.

                              Ashley

                              Ashykay
                              Participant

                                Hi Teodora – thank you so much for your information. Dad and I have been trying to get in touch with Dr Hodi for a while now.

                                We're located in Australia but we are (and by saying that, my Mum obviously!) more than happy to do whatever it takes to get some action – if that means travelling to the US, so be it!

                                Thanks again for your help, incredibly appreciated.

                                Ashley

                              Teodora
                              Guest

                                Ashley,

                                Dana Farber have been slow in responding because they were in transition recently-since February they moved to the new Yawkay building-and somewhat still not very organised.

                                Contact Dr.Hodi's /The Melanoma Oncology  Director/ Assistant Natacha Hyacinthe directly on her E-mail:

                                 

                                Natacha Hyacinthe
                                Administrative Assistant
                                DF/HCC
                                Dana-Farber Cancer Institute
                                44 Binney Street
                                Boston, MA, 02115
                                Phone: 617-632-4715 Fax: 617-582-7992
                                [email protected] 

                                and she will be able to assist you with arranging an appointment.She is very helpful.

                                Good luck to you and your mom.

                                Teodora

                                Teodora
                                Guest

                                  Ashley,

                                  On a second reading I am somewhat confused.You mentioned your mom's melanoma is C-kit positive therefore doctors are assuming  is either mucosal or acral.Then you mention she might be C-kit negative as doctors are withholding her results?Could  this confusion be  attributed to the fact that you have dealt with different 8 doctors and  they had given you contradicting  information?

                                  There are two red lamps blinking in my head  here that make me think this possibly  could be cutaneous melanoma with unknown primary:the location/ spine/-for mucosal melanoma you need mucosal/wet/ tissue where it develops on and having spread without mucosal primary identified/present  is  highly unlikely, and the fact your mentioned twice your mom was a sun-worshipper back in her days. 

                                  No matter of the type of melanoma-cutaneous, acral, mucosal or uveal/ocular/-not all melanomas have permutations.Many have none at all.Mine  is mucosal and right now they are testing my slides and I just have the feeling that as rare as it is,it will not have any specific gene mutations either/just gut feeling/.Also only 60% of the cutaneous melanomas have the BRAF mutation.The rest  have no permutations.

                                  So I need further testing is needed in your mom's case and see a specialist. Dr.Hodi from Dana Farber took special interest in mucosal melanoma so contact them ASAP.

                                   

                                  Good Luck,

                                  Teodora

                                  Teodora
                                  Guest

                                    Ashley,

                                    On a second reading I am somewhat confused.You mentioned your mom's melanoma is C-kit positive therefore doctors are assuming  is either mucosal or acral.Then you mention she might be C-kit negative as doctors are withholding her results?Could  this confusion be  attributed to the fact that you have dealt with different 8 doctors and  they had given you contradicting  information?

                                    There are two red lamps blinking in my head  here that make me think this possibly  could be cutaneous melanoma with unknown primary:the location/ spine/-for mucosal melanoma you need mucosal/wet/ tissue where it develops on and having spread without mucosal primary identified/present  is  highly unlikely, and the fact your mentioned twice your mom was a sun-worshipper back in her days. 

                                    No matter of the type of melanoma-cutaneous, acral, mucosal or uveal/ocular/-not all melanomas have permutations.Many have none at all.Mine  is mucosal and right now they are testing my slides and I just have the feeling that as rare as it is,it will not have any specific gene mutations either/just gut feeling/.Also only 60% of the cutaneous melanomas have the BRAF mutation.The rest  have no permutations.

                                    So I need further testing is needed in your mom's case and see a specialist. Dr.Hodi from Dana Farber took special interest in mucosal melanoma so contact them ASAP.

                                     

                                    Good Luck,

                                    Teodora

                                    FormerCaregiver
                                    Participant

                                      Ashley, I am sorry to read that your mum seems to be running out of options.
                                      Unfortunately, melanoma can be fairly resistant to radiation treatment. However, it is good
                                      that the CT scan didn't show any more areas that could be melanoma.

                                      Melanoma with an unknown primary is treated the same way as if the primary is known
                                      (once the initial lesion has been removed). However, it would be important to know the
                                      details of any pathology report (of a biopsy that has been done) as it is unclear as to
                                      what type of melanoma we are dealing with.

                                      As Yervoy has recently been approved by the TGA in Australia, I think that could be well
                                      worth considering as your mum's next step. It is the best drug that we have at the
                                      moment, so hopefully the oncologist will know how your mum can get access to it.

                                      However, I feel that TIL treatment (adoptive cell therapy) is the most promising therapy
                                      that is available. As far as I know, it is not yet available locally.

                                      The difficult thing with some clinical trials is knowing who to contact, as the
                                      researchers are often too busy to reply.

                                      I encourage you to keep in touch with us in this forum. There are some very
                                      knowledgeable people here who are really up to date with the latest treatment
                                      information.

                                      Hope this helps.

                                      Frank from Australia

                                        Ashykay
                                        Participant

                                          Thanks so much for your post Frank, have written those treatment details down and will pose them to the oncologist tomorrow!

                                          Cheers,

                                          Ashley

                                          Ashykay
                                          Participant

                                            Thanks so much for your post Frank, have written those treatment details down and will pose them to the oncologist tomorrow!

                                            Cheers,

                                            Ashley

                                          FormerCaregiver
                                          Participant

                                            Ashley, I am sorry to read that your mum seems to be running out of options.
                                            Unfortunately, melanoma can be fairly resistant to radiation treatment. However, it is good
                                            that the CT scan didn't show any more areas that could be melanoma.

                                            Melanoma with an unknown primary is treated the same way as if the primary is known
                                            (once the initial lesion has been removed). However, it would be important to know the
                                            details of any pathology report (of a biopsy that has been done) as it is unclear as to
                                            what type of melanoma we are dealing with.

                                            As Yervoy has recently been approved by the TGA in Australia, I think that could be well
                                            worth considering as your mum's next step. It is the best drug that we have at the
                                            moment, so hopefully the oncologist will know how your mum can get access to it.

                                            However, I feel that TIL treatment (adoptive cell therapy) is the most promising therapy
                                            that is available. As far as I know, it is not yet available locally.

                                            The difficult thing with some clinical trials is knowing who to contact, as the
                                            researchers are often too busy to reply.

                                            I encourage you to keep in touch with us in this forum. There are some very
                                            knowledgeable people here who are really up to date with the latest treatment
                                            information.

                                            Hope this helps.

                                            Frank from Australia

                                            ValinMtl
                                            Participant

                                              Hi Ashley, If you want to e-mail me at [email protected], I can give you a contact # for NIH..they can probably tell you if any of their trials are suitable for your mom.  That's if it's possible for your mom to travel to the U.S. I leave Tuesday to go back to NIH for TIL trial.  Val

                                                Gene_S
                                                Participant

                                                  Ashley, remember there is no space in val lowe but the correct way is val_lowe

                                                  Best wishes to YOU…  Gene

                                                  Gene_S
                                                  Participant

                                                    Ashley, remember there is no space in val lowe but the correct way is val_lowe

                                                    Best wishes to YOU…  Gene

                                                    Ashykay
                                                    Participant

                                                      Thanks Val – I will be in touch via email!

                                                      Cheers,

                                                      Ashley

                                                      Ashykay
                                                      Participant

                                                        Thanks Val – I will be in touch via email!

                                                        Cheers,

                                                        Ashley

                                                      ValinMtl
                                                      Participant

                                                        Hi Ashley, If you want to e-mail me at [email protected], I can give you a contact # for NIH..they can probably tell you if any of their trials are suitable for your mom.  That's if it's possible for your mom to travel to the U.S. I leave Tuesday to go back to NIH for TIL trial.  Val

                                                        Ashykay
                                                        Participant

                                                          Hi all,

                                                          Thank you so much for your responses.

                                                          So sorry for the confusion about c-kit – I was a little confused at first myself. What happened was that Mum's original biopsy swabbed for c-kit staining. However, now we have actually sent the biopsy for the definitive c-kit test…and we think that it is going to be negative which is odd.

                                                          I will definitely try to get in touch with Dr Hodi per the address you have provided – I have tried to get in touch with him as well as my Dad without success – however this now makes sense why!

                                                          Mum is off to the oncologist tomrorow so it will be interesting to see what he says. Dad and I are armed with our next lot of questions and options. We have also been aware of the successful (well, 3 patients…) treatment of leukemia patients with gene therapy, and I have put an email off to them t o see if they'd be interesting in using Mum as a test for other cancers and the gene therapy.

                                                          Thanks again for your help…I will let you all know how the oncologist goes tomorrow.

                                                          Cheers,

                                                          Ashley

                                                          Ashykay
                                                          Participant

                                                            Hi all,

                                                            Thank you so much for your responses.

                                                            So sorry for the confusion about c-kit – I was a little confused at first myself. What happened was that Mum's original biopsy swabbed for c-kit staining. However, now we have actually sent the biopsy for the definitive c-kit test…and we think that it is going to be negative which is odd.

                                                            I will definitely try to get in touch with Dr Hodi per the address you have provided – I have tried to get in touch with him as well as my Dad without success – however this now makes sense why!

                                                            Mum is off to the oncologist tomrorow so it will be interesting to see what he says. Dad and I are armed with our next lot of questions and options. We have also been aware of the successful (well, 3 patients…) treatment of leukemia patients with gene therapy, and I have put an email off to them t o see if they'd be interesting in using Mum as a test for other cancers and the gene therapy.

                                                            Thanks again for your help…I will let you all know how the oncologist goes tomorrow.

                                                            Cheers,

                                                            Ashley

                                                            jag
                                                            Participant

                                                              test

                                                              jag
                                                              Participant

                                                                test

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