The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

My Results

Forums General Melanoma Community My Results

  • Post
    Lisa13
    Participant

      Well, the results today wern't good news – the nodules in my lungs are melanoma. That being said, my onc. was very optimistic and never for a moment made me feel like I was doomed. I have low bulk disease in my lungs which is growing slowly. I'm going to go into the IL-21 trial versus decarbazine as this is my first line of treatment.

      Well, the results today wern't good news – the nodules in my lungs are melanoma. That being said, my onc. was very optimistic and never for a moment made me feel like I was doomed. I have low bulk disease in my lungs which is growing slowly. I'm going to go into the IL-21 trial versus decarbazine as this is my first line of treatment. Of course if this doesn't work, we are going straight into ipi.  I was so happy he didn't make me feel like I had months to live as he said that stats were old and that there were so many new drugs for melanoma that were prolonging people's lives.  I have no choice other to be positive and focused and pray that one of these treatments will get rid of these nodules.

      I would love to hear of other people's stories who've had numerous lung nodules. I must believe that these can shrink and disappear and I know it's been possible for many people.

      Lisa

    Viewing 15 reply threads
    • Replies
        Carol Taylor
        Participant

          Lisa,

          I'm sorry the results weren't what you (and us!) hoped for.  But I commend you for your determination to do what you have to do, to stay focused, and be positive.

          There are a growing number of promising treatments, so we'll be praying that your name is on one. I'm glad you've got such a great onc. That's a big battle won already.

          Give your little girl & hubby lots of hugs and let them be a source of constant inspiration for you. Hang tight and be strong & tough. You can do this and beat this.

          Lord, in Your mercy, open the doors for treatment that Lisa needs that will work. Thank You. Amen and Amen.

          Grace and peace,

          Carol

            BethA in VA
            Participant

              Amen!!  What a great reply!  I couldn't say anything more…so thanks you for expressing the good wishes to Lisa and her family. 

              Praying Lisa…         Beth 3/B

              BethA in VA
              Participant

                Amen!!  What a great reply!  I couldn't say anything more…so thanks you for expressing the good wishes to Lisa and her family. 

                Praying Lisa…         Beth 3/B

              Carol Taylor
              Participant

                Lisa,

                I'm sorry the results weren't what you (and us!) hoped for.  But I commend you for your determination to do what you have to do, to stay focused, and be positive.

                There are a growing number of promising treatments, so we'll be praying that your name is on one. I'm glad you've got such a great onc. That's a big battle won already.

                Give your little girl & hubby lots of hugs and let them be a source of constant inspiration for you. Hang tight and be strong & tough. You can do this and beat this.

                Lord, in Your mercy, open the doors for treatment that Lisa needs that will work. Thank You. Amen and Amen.

                Grace and peace,

                Carol

                Lori C
                Participant

                  Lisa, Will's lung nodules were shrunk by IL-2 and never grew again.  He had other disease (liver) that was the problem, but I know that there are a lot of people out there with long-term stable lung mel. 

                  I am sorry they were melanoma, but don't get discouraged, there are many many options.

                   

                  Lori

                  Lori C
                  Participant

                    Lisa, Will's lung nodules were shrunk by IL-2 and never grew again.  He had other disease (liver) that was the problem, but I know that there are a lot of people out there with long-term stable lung mel. 

                    I am sorry they were melanoma, but don't get discouraged, there are many many options.

                     

                    Lori

                    Erinmay22
                    Participant
                      Lisa – so sorry to hear about the mets in lungs. I am in a similar place as you. I had 12+ nodules in my lungs in Jan. Mar confirmed Mel. In April I had a new scan and my spots are gone! Now I had a ct scan today… So we will see if that trend holds up.

                      So glad to hear your onc stays positive! Thru all this I have always felt so much better seeing my onc cuz he makes me feel so much better! Now I am in a goofy spot cuz I am braf+ but can’t get in trial because I have no measurable growth (even though confirmed staff 4…). We haven’t even discussed doing il-2. First things will be ipi.

                      So hang in there! Great to see such a positive attitude!
                      Thoughts and prayers!
                      Erin

                      Erinmay22
                      Participant
                        Lisa – so sorry to hear about the mets in lungs. I am in a similar place as you. I had 12+ nodules in my lungs in Jan. Mar confirmed Mel. In April I had a new scan and my spots are gone! Now I had a ct scan today… So we will see if that trend holds up.

                        So glad to hear your onc stays positive! Thru all this I have always felt so much better seeing my onc cuz he makes me feel so much better! Now I am in a goofy spot cuz I am braf+ but can’t get in trial because I have no measurable growth (even though confirmed staff 4…). We haven’t even discussed doing il-2. First things will be ipi.

                        So hang in there! Great to see such a positive attitude!
                        Thoughts and prayers!
                        Erin

                        MichaelFL
                        Participant

                          I would like to make everyone aware that IL-2 and IL-21 are not the same. IL-21 is a experimental drug which is currently in clinical trials.

                          IL-21 was approved for clinical trials in metastatic melanoma and renal cell carcinoma patients. It was shown to be safe for administration with flu-like symptoms as side effects. Dose-limiting toxicities included low lymphocyte, neutrophil, and thrombocyte count as well as hepatotoxicity. According to the Response Evaluation Criteria in Solid Tumors (RECIST) response scale, 2 out of 47 MM patients and 4 out of 19 RCC patients showed complete and partial responses, respectively. In addition, there was an increase of peforin, granzyme B, IFN-Y, and CXCR3 mRNA in peripheral NK cells and CD8+ T-cells. This suggested that IL-21 enhances the CD8+ effector functions thus leading to anti-tumor response. IL-21 proceeded to Phase 2 clinical trials where it was administered alone or coupled with drugs as sorafinib and rituximab.

                          Here is the trial:

                          http://clinicaltrials.gov/ct2/show/NCT01152788?term=il-21+melanoma&recr=Open&rank=1

                          There is also a phase II trial, but it is not recruiting patients at this time.

                          Good luck to you Lisa,

                          Michael

                          MichaelFL
                          Participant

                            I would like to make everyone aware that IL-2 and IL-21 are not the same. IL-21 is a experimental drug which is currently in clinical trials.

                            IL-21 was approved for clinical trials in metastatic melanoma and renal cell carcinoma patients. It was shown to be safe for administration with flu-like symptoms as side effects. Dose-limiting toxicities included low lymphocyte, neutrophil, and thrombocyte count as well as hepatotoxicity. According to the Response Evaluation Criteria in Solid Tumors (RECIST) response scale, 2 out of 47 MM patients and 4 out of 19 RCC patients showed complete and partial responses, respectively. In addition, there was an increase of peforin, granzyme B, IFN-Y, and CXCR3 mRNA in peripheral NK cells and CD8+ T-cells. This suggested that IL-21 enhances the CD8+ effector functions thus leading to anti-tumor response. IL-21 proceeded to Phase 2 clinical trials where it was administered alone or coupled with drugs as sorafinib and rituximab.

                            Here is the trial:

                            http://clinicaltrials.gov/ct2/show/NCT01152788?term=il-21+melanoma&recr=Open&rank=1

                            There is also a phase II trial, but it is not recruiting patients at this time.

                            Good luck to you Lisa,

                            Michael

                              dian in spokane
                              Participant

                                oh thanks Michael! I was just going to go check into what study might be going with IL 21 when you supplied the info!

                                you are always on the spot!

                                dian

                                dian in spokane
                                Participant

                                  oh thanks Michael! I was just going to go check into what study might be going with IL 21 when you supplied the info!

                                  you are always on the spot!

                                  dian

                                dian in spokane
                                Participant

                                  Hi lisa,

                                  Sorry for the bad news, but good job on getting a plan right into action. Can you tell me.. did you mean 'IL21" or IL2" I've not heard of IL 21, but I know there are a lot of interlukens out there

                                  dian

                                    Lisa13
                                    Participant

                                      Hi Dian.

                                      It's IL-21 – very much different than IL-2.  I believe it's new and been in trials versus decarbazine.  It's toxic, but not as toxic as IL-2.

                                      Lisa

                                      Lisa13
                                      Participant

                                        Hi Dian.

                                        It's IL-21 – very much different than IL-2.  I believe it's new and been in trials versus decarbazine.  It's toxic, but not as toxic as IL-2.

                                        Lisa

                                      dian in spokane
                                      Participant

                                        Hi lisa,

                                        Sorry for the bad news, but good job on getting a plan right into action. Can you tell me.. did you mean 'IL21" or IL2" I've not heard of IL 21, but I know there are a lot of interlukens out there

                                        dian

                                        lhaley
                                        Participant

                                          Lisa,

                                          I'm so sorry to hear that you got bad news.  It sounds like your onc is ready with options and is in positive mode. 

                                          I have 2 nodules in my lungs that they have been watching and at this point are stable (no drugs) and they aren't actually sure if they are mel or not.  I have had slow progressing stage IV disease since 06.  Just wanted you to know that we are each individuals and not statistics.

                                          You will be one of the success stories!  Keep us up to date and surround yourself with the love of your young family.

                                          Linda

                                            Lisa13
                                            Participant

                                              It definately sucks to be in the land of Stage 4. I knew there was a chance, but when I was told, it really threw me into some kind of survival mode.  My last scan was April 27th, so I'm most certainly happy my onc. got me a CT scan this past Monday. I can't imagine what another 2 months would have shown.  There has been no biopsy – just progression of growth which tells the story.

                                              I think I'm going to do the decarbazine route first rather than the clinical trial. My onc said we will know in 2 weeks if this is working, but would wait longer for results in IL-21.  If it works, then we keep with what's working – if not, we move into IPI and hope that works.  Apparently both these drugs work better on patients with lung/skin mets. Decarbazine can work for 9-12 months, so if it works and then doesn't down the road, I have another great choice that hopefully will work. If neither one of those work, then I start shitting my pants 🙂  He also mentioned being able to use my tumour in 6 months since I gave it to the lab in February for TIL studies. He's great!  Never once made me feel this was over and seemed very opptimistic about melanoma and it's new treatment.  He never said this is grim, you have 6-9 months to live or anything to do with death – he made me feel hopeful which is what we all need.

                                              Has anyone tried the decarbazine route as a first line of treatment?  Apparently in Canada we don't dive right into ipi and need to try this approach (or a trial first).

                                              This situation sucks, but it isn't the end by far. There are lots of success stories on here and I pray that I will be one of them too.  For now, I do treatment and enjoy this beautiful summer with my daughter and look forward to our new house in August. 

                                              Lisa

                                              Stage 4 – lung mets 

                                              FormerCaregiver
                                              Participant

                                                Sorry to read of your stage 4 diagnosis. Please remember that there are some really
                                                promising treatments emerging, and that there is always hope that you will be able to get
                                                things under control.

                                                I have been looking at the treatment history of some long-term stage 4 people, and I think
                                                that it is good for everyone to do the same. You may have seen my recent post about
                                                promising treatments (another update will be needed soon) but in case you haven't, here
                                                is the link:
                                                http://www.melanoma.org/community/mpip-melanoma-patients-information-page/most-promising-treatments-comments-invited

                                                Why don't you try IL-21 or Yervoy, if your oncologist thinks that's a good idea? TIL
                                                therapy probably hold the greatest potential for success, but it isn't an easy process.
                                                Decarbazine is truly an ancient chemo drug that can always be tried later if the others
                                                don't work as they should.

                                                Hope this helps.

                                                Frank from Australia

                                                FormerCaregiver
                                                Participant

                                                  Sorry to read of your stage 4 diagnosis. Please remember that there are some really
                                                  promising treatments emerging, and that there is always hope that you will be able to get
                                                  things under control.

                                                  I have been looking at the treatment history of some long-term stage 4 people, and I think
                                                  that it is good for everyone to do the same. You may have seen my recent post about
                                                  promising treatments (another update will be needed soon) but in case you haven't, here
                                                  is the link:
                                                  http://www.melanoma.org/community/mpip-melanoma-patients-information-page/most-promising-treatments-comments-invited

                                                  Why don't you try IL-21 or Yervoy, if your oncologist thinks that's a good idea? TIL
                                                  therapy probably hold the greatest potential for success, but it isn't an easy process.
                                                  Decarbazine is truly an ancient chemo drug that can always be tried later if the others
                                                  don't work as they should.

                                                  Hope this helps.

                                                  Frank from Australia

                                                  Lisa13
                                                  Participant

                                                    Hi Frank,

                                                    In Canada, we're unable to use Yervoy as a first line treatment, which is why I have a choice between decarbazine or the IP-21 versus decarbazine trial.  I've had no treatment since being diagnosed in January, so my oncologist felt that we try one of these options first. Decarbazine has a 20% response rate and I was told can last 9-12 months if it works. He also mentioned that since my mel. is limited to my lungs, the decarbazine seems to work better under these conditions. While being on decarbazine, I will know in 2 weeks whether it's working or not and if it isn't, we can get right on to IPI and try that. If I was on the IL-21 trial, then my wait to see if it was working would be longer and possibly making the disease spread more.    I've read alot of people in the U.S. use IL-2 or Biochemotherapy, but we don't use those here.

                                                    Since the cancer has spread very slowly since April, I have some time. Ultimately, I hope one of these will work for me or else I'll have to have a good list of other options – any thoughts?

                                                    Lisa

                                                    Lisa13
                                                    Participant

                                                      Hi Frank,

                                                      In Canada, we're unable to use Yervoy as a first line treatment, which is why I have a choice between decarbazine or the IP-21 versus decarbazine trial.  I've had no treatment since being diagnosed in January, so my oncologist felt that we try one of these options first. Decarbazine has a 20% response rate and I was told can last 9-12 months if it works. He also mentioned that since my mel. is limited to my lungs, the decarbazine seems to work better under these conditions. While being on decarbazine, I will know in 2 weeks whether it's working or not and if it isn't, we can get right on to IPI and try that. If I was on the IL-21 trial, then my wait to see if it was working would be longer and possibly making the disease spread more.    I've read alot of people in the U.S. use IL-2 or Biochemotherapy, but we don't use those here.

                                                      Since the cancer has spread very slowly since April, I have some time. Ultimately, I hope one of these will work for me or else I'll have to have a good list of other options – any thoughts?

                                                      Lisa

                                                      FormerCaregiver
                                                      Participant

                                                        Lisa, I must admit that I am not a fan of standard chemo drugs like decarbazine. They are
                                                        crude in their design and are very cytotoxic. Therefore, they are toxic to both good cells
                                                        as well as to the melanoma cells. They also have a lot of side effects, and the duration
                                                        of response is fairly short in most people. Unfortunately, melanoma seems to have little
                                                        trouble in outsmarting drugs like decarbazine in a matter of months.

                                                        Therefore, I feel that treatments that are more sophisticated should be tried first or as
                                                        soon as possible. Newer treatments are cleverer in how they act, and may result in a
                                                        better prognosis.

                                                        I wonder if you would be eligible for GM-CSF (Leukine) treatment? Is it available in your
                                                        area?

                                                        Genetic testing and targeted treatments are being developed, and look promising. An
                                                        example of this approach are BRAF inhibitors and these would certainly be worth
                                                        considering, depending on eligibility. Here are the clinical trials that are currently
                                                        recruiting patients in Canada:
                                                        http://www.clinicaltrials.gov/ct2/results?term=&recr=Open&rslt=&type=Intr&cond=melanoma&intr=&outc=&lead=&spons=&id=&state1=&cntry1=NA%3ACA&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

                                                        Hope this helps

                                                        Frank from Australia

                                                        Lisa13
                                                        Participant

                                                          Hi Frank,

                                                          I'm not a big fan of chemo either considering it doesn't last long, but I have to attempt something for a first line of treatment. Although chemo is toxic, he told me decarbazine is better tolerated.  In the IL-21 versus decarbazine trial, I may not get the IL-21 anyway, so it's kind of a toss up. At least trying the chemo, it might work – especially on low grade mets in lungs, so if it works for a bit and stops, I can then switch to Yervoy.  I know Yervoy has a 25-30% response rate so it's not guranteed either, but I pray that it ends up being the magic bullet.  If Yervoy was being used as a first line treatment, that would be my first choice.

                                                          We don't do Leukine or IL-2 here in Canada.  I think if decarbazine and yervoy didn't work, I'd do biochemo or IL-2 route in the States if possible. If I can find something to zap this disease for a while or at least keep it stable, there is hope that I can either be NED or stable for years.

                                                          I'm not BRAF positive which sucks. I even told him that I'm frustrated that they were finding all these drugs that worked in conjunction to B-RAF, but he said they're now trying to figure out what to do with the 50% that arn't positive. 

                                                          They're currently working on the TIL therapy here but arn't allowed to put it in human's yet. He's working as fast as he can to get it going, but said it could be 6 months.

                                                          Thanks for your help Frank.  I want to try the IL-21 trial, but waiting for scans in the trial is much longer and I'd want to know sooner if this cancer is growing and spreading.

                                                          Lisa

                                                          lhaley
                                                          Participant

                                                            Lisa,

                                                            Have them test your blood for your HLA factor.  There are several trials in the states for those who have hla A-2 positive factors.  That could be a future option if needed. 

                                                            When they thought my lung nodules were active my mel specialist talked about putting me on Temadore for a month, instead of the DTIC and then into Ippi compassionate.  The side effects aren't as harsh.

                                                            When is the plan for you to start? 

                                                            Our thoughts and prayers are with you.

                                                            Linda

                                                            lhaley
                                                            Participant

                                                              Lisa,

                                                              Have them test your blood for your HLA factor.  There are several trials in the states for those who have hla A-2 positive factors.  That could be a future option if needed. 

                                                              When they thought my lung nodules were active my mel specialist talked about putting me on Temadore for a month, instead of the DTIC and then into Ippi compassionate.  The side effects aren't as harsh.

                                                              When is the plan for you to start? 

                                                              Our thoughts and prayers are with you.

                                                              Linda

                                                              Lisa13
                                                              Participant

                                                                Hi Frank,

                                                                I'm not a big fan of chemo either considering it doesn't last long, but I have to attempt something for a first line of treatment. Although chemo is toxic, he told me decarbazine is better tolerated.  In the IL-21 versus decarbazine trial, I may not get the IL-21 anyway, so it's kind of a toss up. At least trying the chemo, it might work – especially on low grade mets in lungs, so if it works for a bit and stops, I can then switch to Yervoy.  I know Yervoy has a 25-30% response rate so it's not guranteed either, but I pray that it ends up being the magic bullet.  If Yervoy was being used as a first line treatment, that would be my first choice.

                                                                We don't do Leukine or IL-2 here in Canada.  I think if decarbazine and yervoy didn't work, I'd do biochemo or IL-2 route in the States if possible. If I can find something to zap this disease for a while or at least keep it stable, there is hope that I can either be NED or stable for years.

                                                                I'm not BRAF positive which sucks. I even told him that I'm frustrated that they were finding all these drugs that worked in conjunction to B-RAF, but he said they're now trying to figure out what to do with the 50% that arn't positive. 

                                                                They're currently working on the TIL therapy here but arn't allowed to put it in human's yet. He's working as fast as he can to get it going, but said it could be 6 months.

                                                                Thanks for your help Frank.  I want to try the IL-21 trial, but waiting for scans in the trial is much longer and I'd want to know sooner if this cancer is growing and spreading.

                                                                Lisa

                                                                FormerCaregiver
                                                                Participant

                                                                  Lisa, I must admit that I am not a fan of standard chemo drugs like decarbazine. They are
                                                                  crude in their design and are very cytotoxic. Therefore, they are toxic to both good cells
                                                                  as well as to the melanoma cells. They also have a lot of side effects, and the duration
                                                                  of response is fairly short in most people. Unfortunately, melanoma seems to have little
                                                                  trouble in outsmarting drugs like decarbazine in a matter of months.

                                                                  Therefore, I feel that treatments that are more sophisticated should be tried first or as
                                                                  soon as possible. Newer treatments are cleverer in how they act, and may result in a
                                                                  better prognosis.

                                                                  I wonder if you would be eligible for GM-CSF (Leukine) treatment? Is it available in your
                                                                  area?

                                                                  Genetic testing and targeted treatments are being developed, and look promising. An
                                                                  example of this approach are BRAF inhibitors and these would certainly be worth
                                                                  considering, depending on eligibility. Here are the clinical trials that are currently
                                                                  recruiting patients in Canada:
                                                                  http://www.clinicaltrials.gov/ct2/results?term=&recr=Open&rslt=&type=Intr&cond=melanoma&intr=&outc=&lead=&spons=&id=&state1=&cntry1=NA%3ACA&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

                                                                  Hope this helps

                                                                  Frank from Australia

                                                                  Lisa13
                                                                  Participant

                                                                    It definately sucks to be in the land of Stage 4. I knew there was a chance, but when I was told, it really threw me into some kind of survival mode.  My last scan was April 27th, so I'm most certainly happy my onc. got me a CT scan this past Monday. I can't imagine what another 2 months would have shown.  There has been no biopsy – just progression of growth which tells the story.

                                                                    I think I'm going to do the decarbazine route first rather than the clinical trial. My onc said we will know in 2 weeks if this is working, but would wait longer for results in IL-21.  If it works, then we keep with what's working – if not, we move into IPI and hope that works.  Apparently both these drugs work better on patients with lung/skin mets. Decarbazine can work for 9-12 months, so if it works and then doesn't down the road, I have another great choice that hopefully will work. If neither one of those work, then I start shitting my pants 🙂  He also mentioned being able to use my tumour in 6 months since I gave it to the lab in February for TIL studies. He's great!  Never once made me feel this was over and seemed very opptimistic about melanoma and it's new treatment.  He never said this is grim, you have 6-9 months to live or anything to do with death – he made me feel hopeful which is what we all need.

                                                                    Has anyone tried the decarbazine route as a first line of treatment?  Apparently in Canada we don't dive right into ipi and need to try this approach (or a trial first).

                                                                    This situation sucks, but it isn't the end by far. There are lots of success stories on here and I pray that I will be one of them too.  For now, I do treatment and enjoy this beautiful summer with my daughter and look forward to our new house in August. 

                                                                    Lisa

                                                                    Stage 4 – lung mets 

                                                                  lhaley
                                                                  Participant

                                                                    Lisa,

                                                                    I'm so sorry to hear that you got bad news.  It sounds like your onc is ready with options and is in positive mode. 

                                                                    I have 2 nodules in my lungs that they have been watching and at this point are stable (no drugs) and they aren't actually sure if they are mel or not.  I have had slow progressing stage IV disease since 06.  Just wanted you to know that we are each individuals and not statistics.

                                                                    You will be one of the success stories!  Keep us up to date and surround yourself with the love of your young family.

                                                                    Linda

                                                                    Wally
                                                                    Participant

                                                                      Really sorry to hear this, Lisa. Hang in there! It is really surprising how a possitive Oncologist can affect your outlook under these circumstances. I had a single large tumour in my right lung diagnosed as stage 4 Met MM that was surgically removed in April 2011. Primary was thought to have been a stage 1 MM surgically removed from right ear some 5 years previously but now they are unsure whether that is the case so primary at this stage unknown. The Oncologist told me post op before giving me the diagnosis that it was good news in that it was totally removed and there was no sign of it having spread. No treatment required – wait and monitor strategy suggested – only a follow-up visit every 3 months with some blood tests and a chest X-ray. Not sure if an X-ray is sufficient to identify a recurrance but hey, they know what the position is.

                                                                      I am new to this Melanoma thing so cannot understand why they do not cut the blighters in your lung out like they did mine? Is there really a need to go the treatment route? Just enquiring because the options appear to be so inconsistant!

                                                                        Lisa13
                                                                        Participant

                                                                          I have 15 nodules in my lungs – the biggest measuring 11mm.  It would do more bad then good by cutting 15 nodules out as well as chunks of my lungs, so systemic is the best route. If I had no more than 3, he said they would operate.  I have no symptoms right now, normal blood work and feel great – I have the strength to do the systemic thing now.  If it doesn't work, I'll move right along to Yervoy.  I would feel alot better if I could get these 15 down to a lower number or kill them all. 

                                                                          Lisa

                                                                          Lisa13
                                                                          Participant

                                                                            I have 15 nodules in my lungs – the biggest measuring 11mm.  It would do more bad then good by cutting 15 nodules out as well as chunks of my lungs, so systemic is the best route. If I had no more than 3, he said they would operate.  I have no symptoms right now, normal blood work and feel great – I have the strength to do the systemic thing now.  If it doesn't work, I'll move right along to Yervoy.  I would feel alot better if I could get these 15 down to a lower number or kill them all. 

                                                                            Lisa

                                                                          Wally
                                                                          Participant

                                                                            Really sorry to hear this, Lisa. Hang in there! It is really surprising how a possitive Oncologist can affect your outlook under these circumstances. I had a single large tumour in my right lung diagnosed as stage 4 Met MM that was surgically removed in April 2011. Primary was thought to have been a stage 1 MM surgically removed from right ear some 5 years previously but now they are unsure whether that is the case so primary at this stage unknown. The Oncologist told me post op before giving me the diagnosis that it was good news in that it was totally removed and there was no sign of it having spread. No treatment required – wait and monitor strategy suggested – only a follow-up visit every 3 months with some blood tests and a chest X-ray. Not sure if an X-ray is sufficient to identify a recurrance but hey, they know what the position is.

                                                                            I am new to this Melanoma thing so cannot understand why they do not cut the blighters in your lung out like they did mine? Is there really a need to go the treatment route? Just enquiring because the options appear to be so inconsistant!

                                                                            mom3girlsFL
                                                                            Participant

                                                                              Hi Lisa,

                                                                              I am so sorry about your news.  I do not have experience with this, but I just wanted to send you support and best wishes with your treatment.

                                                                              Laurie

                                                                              mom3girlsFL
                                                                              Participant

                                                                                Hi Lisa,

                                                                                I am so sorry about your news.  I do not have experience with this, but I just wanted to send you support and best wishes with your treatment.

                                                                                Laurie

                                                                            Viewing 15 reply threads
                                                                            • You must be logged in to reply to this topic.
                                                                            About the MRF Patient Forum

                                                                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                                            Popular Topics