MRF-Logo2019-Horizontal-RGB
New to Treatment
REGISTER
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.

New to Treatment

› Forums › General Melanoma Community › New to Treatment

  • Post
    • May 10, 2011 at 4:40 pm
    MMarieMetcalfe
    Participant

      I just had surgery on 4/12/2011.  I had a tumor sized at 4.5mm, that was removed from the upper back/right shoulder.  My scar is pretty huge.  It is about 7 inches long.  I wasn't expecting that.  I just had the remainder of my stitches removed, but there is a lot of tension and sleeping is rough.  I want to know if there is an alternate than pain medication.  I start the Interferon on 5/23/2011, and I am still trying to wrap my head around that too.  I was also diagnosed in March with Fatty Liver Disease, and I know there are some health issues w

      I just had surgery on 4/12/2011.  I had a tumor sized at 4.5mm, that was removed from the upper back/right shoulder.  My scar is pretty huge.  It is about 7 inches long.  I wasn't expecting that.  I just had the remainder of my stitches removed, but there is a lot of tension and sleeping is rough.  I want to know if there is an alternate than pain medication.  I start the Interferon on 5/23/2011, and I am still trying to wrap my head around that too.  I was also diagnosed in March with Fatty Liver Disease, and I know there are some health issues with the Interferon.  My doctor seems to think it is okay, but it still makes me nervous.  Any words of wisdom?  Thanks…

    Viewing 5 reply threads
    • Replies
        • May 10, 2011 at 4:58 pm
        Carol Taylor
        Participant

          Hi Marie,

          To make sure: is your dr at the cancer center you're going to a melanoma specialist? If so, good. If not, please ask to be transferred to one. As you're new to this, don't take it for granted, make sure. It's vital that you be in the hands of melanoma specialists from ow on and that includes your dermatologist, oncologist, and surgical onc.

          You'll learn to deal with scars. They're bumps in the road, but you move on. And that's important that you realize you're moving through this. Try to be positive and focused, clear-headed. I read your profile, you've got a lot of great stuff going on…two young daughters, a fiance. 

          You're at a good place here. There are some fantastically knowledgable people here when it comes to the medical aspects of melanoma.

          words of wisdom: make sure all drs of every kind are melanoma specialists. Don't give in to panic and fear. While they can have their place in the beginning, they can also work against you. Stay clear-headed and focused. You'll need to make decisions and you'll want to be able to make the best possible ones for you. Don't sleep on your sore side. Put that fiance to work by gentllllyyyyyyy massaging around the tense area where your stitches were. A physical therapist might be of help. The pain will ease up as the healing continues.  Remember, you had a mass of tissue removed so you're not just dealing with a wound that needs to close. Concentrate on being alive! You've been through a lot and we can identitfy, but consider the alternative and give thanks.

          Grace and peace Friend,

          Carol stage 3b

            • May 10, 2011 at 5:40 pm
            Erinmay22
            Participant

              Marie –

              Sorry to hear you're going thru this.  We all know how scary it can be.  Our stories sound very similar (at least the beginning).  I had a 4.5mm nodular melanoma removed from my upper right back.(http://melanomaandthecity.blogspot.com/2011/03/warning-graphic-pictures-battle-wounds.html) shows the scar I was left with.  Like you it was NOT what I was expecting when they said I'd be left with a "sizeable defect".  Not sure how this keystone flap they did was any better than a 7" slash! 

              But anyway – I opted not to do interferon and was trying to get in a clinical trial in Jan for Ipi when they discovered spots on my lungs.  Biopsy March 1st did confirm Melanoma so that puts me in the stage IV group.  Still trying to figure out what treatment route I take since the 2nd trial (BRAF) I was trying to get in to I don't qualify for.  I am BRAF +, but luckily my April scans showed improvement (or maybe there were just false positives before?).

              Hang in there!  It's crazy how fast all this comes at us.  It seems like for me the surgery part was all quick – found out on a Thursday I had melanoma and Tuesday I was having the WLE and sentinel lymph node biopsy (which in my case did come back positive).  All other lymph nodes in the region were clear!  All this was done while I was switching jobs and moving from NC to NJ.  It's the deciding treatment route that seems to take so long for me! 

              Best of luck!  Thoughts and prayers with you.
              Erin

              • May 11, 2011 at 6:21 pm
              rbruce
              Participant

                Erin, your story is VERY similar to mine.  I had a spot on my upper back removed early March, found out it was melanoma on March 11.  PET/CT showed what the docs called "areas of concern" on my lungs but told me they could very well be scar tissue or nothing.  Had VATS in March 28th on my lungs for a biopsy and it came back positive that I had a number of tiny tumors in both lungs that were melanoma.  Went to UCSF melanoma specialist Dr. Adil Daud.  He said that they were making great progress with new "inhibitor drugs" that sounded like a cake walk compared to IL-2, IPI or Interferon.  Had my tissue blocks sent to UCSF for genetic testing and I am not BRAF+, but instead I am NRAS Wild Type (about 20% of melanoma patients) and I did not qualify either for the cool new therapy!. Do you know what your specific mutation is?  It is important when considering trials.  I was offered a trial at UCSF that is Carboplatin and Taxol with the addition of Axitinib, pretty much very old drugs with a twist.  SO….I flew to se Dr. Steven O'Day at The Angeles Clinic in Los Angeles for a 2nd opinion.  Dr. O'Day is a leading mel doc very involved in bringing Yervoy (Ipilumibab) to market.  He suggested I wait a couple of weeks until i qualified for another PET/CT to see if things have grown or metastasized anywhere else. My next PET/CT is tomorrow the 12th then Onc appt at UCSF on the 17th.  Gotta make some decisions.   I have spent all this time looking up clinical trials and trying to understand if I qualify for them.  Have you seen the TIL Treatment offered by Dr. Steven Rosenberg at the National Cancer Institute?  TIL stands for Tumor Infiltreating Lymphocytes.  The treatment uses your own tumor cells, which have been reengineered in the lab and put back into your body to kill the cancer cells.  I have obtained a copy of the most recent report, dated April 15, 2011, and the results have been remarkable for those who qualify.  I have just begun communicating with them to see if I qualify.  I don't know about you, but the waiting has been awful.  I did find a local cancer support group that has helped me immensely.  That, and this forum have kept me motivated to search out trials.  NO ONE will do a better job of finding trials than you.  There is a webiste that has a clinical trial finder and support people that will help you navigate the various trials.  I'm sorry this mesage is so long, but I felt compelled to write after seeing your post and our similiarities.  Let me know if you want a copy of the report on TIL and the clinical trial finder for melanoma.  One last suggestion, checkout Joe Fornear's story at http://www.strongholdministry.org.  Joe is a 8 year stage IV mel survivor that has a ministry just for cancer patients.  Is story is nothing short of miraculous.  I am in regular communication with him and consider him part of my team. 

                • May 12, 2011 at 1:05 am
                Erinmay22
                Participant

                  hi –

                  thanks for the info!  It's amazing thru this journey how many folks I've run in to with similiar stories.  Sorry to have to meet you guys this way!  I have heard of the TIL.  I'm kind of in wait mode at the moment.  I'm meeting my doctor again on Friday to figure out what we do next.  We have figured out I'm B-raf + but didn't qualify for the trial because the spots left on my lungs are too small…  which I know I should be happy about yet I still want to feel like I'm doing something. 

                  So this whole thing is just a rollercoaster!  🙂  I"m guessing when I see the doctor on Friday he'll schedule the next set of scans.  I have a feeling he'll suggest maybe waiting to see if things have changed.  If so – depending on size maybe suggest ipi first.  Who knows!  I go to Sloan right now – so I feel like I am in good hands but always looking at what the options are out there!

                  Stay strong and keep us posted on how things are going!  I'll have to check out Joe's story. Thanks for all the info!

                  • May 12, 2011 at 1:05 am
                  Erinmay22
                  Participant

                    hi –

                    thanks for the info!  It's amazing thru this journey how many folks I've run in to with similiar stories.  Sorry to have to meet you guys this way!  I have heard of the TIL.  I'm kind of in wait mode at the moment.  I'm meeting my doctor again on Friday to figure out what we do next.  We have figured out I'm B-raf + but didn't qualify for the trial because the spots left on my lungs are too small…  which I know I should be happy about yet I still want to feel like I'm doing something. 

                    So this whole thing is just a rollercoaster!  🙂  I"m guessing when I see the doctor on Friday he'll schedule the next set of scans.  I have a feeling he'll suggest maybe waiting to see if things have changed.  If so – depending on size maybe suggest ipi first.  Who knows!  I go to Sloan right now – so I feel like I am in good hands but always looking at what the options are out there!

                    Stay strong and keep us posted on how things are going!  I'll have to check out Joe's story. Thanks for all the info!

                    • May 11, 2011 at 6:21 pm
                    rbruce
                    Participant

                      Erin, your story is VERY similar to mine.  I had a spot on my upper back removed early March, found out it was melanoma on March 11.  PET/CT showed what the docs called "areas of concern" on my lungs but told me they could very well be scar tissue or nothing.  Had VATS in March 28th on my lungs for a biopsy and it came back positive that I had a number of tiny tumors in both lungs that were melanoma.  Went to UCSF melanoma specialist Dr. Adil Daud.  He said that they were making great progress with new "inhibitor drugs" that sounded like a cake walk compared to IL-2, IPI or Interferon.  Had my tissue blocks sent to UCSF for genetic testing and I am not BRAF+, but instead I am NRAS Wild Type (about 20% of melanoma patients) and I did not qualify either for the cool new therapy!. Do you know what your specific mutation is?  It is important when considering trials.  I was offered a trial at UCSF that is Carboplatin and Taxol with the addition of Axitinib, pretty much very old drugs with a twist.  SO….I flew to se Dr. Steven O'Day at The Angeles Clinic in Los Angeles for a 2nd opinion.  Dr. O'Day is a leading mel doc very involved in bringing Yervoy (Ipilumibab) to market.  He suggested I wait a couple of weeks until i qualified for another PET/CT to see if things have grown or metastasized anywhere else. My next PET/CT is tomorrow the 12th then Onc appt at UCSF on the 17th.  Gotta make some decisions.   I have spent all this time looking up clinical trials and trying to understand if I qualify for them.  Have you seen the TIL Treatment offered by Dr. Steven Rosenberg at the National Cancer Institute?  TIL stands for Tumor Infiltreating Lymphocytes.  The treatment uses your own tumor cells, which have been reengineered in the lab and put back into your body to kill the cancer cells.  I have obtained a copy of the most recent report, dated April 15, 2011, and the results have been remarkable for those who qualify.  I have just begun communicating with them to see if I qualify.  I don't know about you, but the waiting has been awful.  I did find a local cancer support group that has helped me immensely.  That, and this forum have kept me motivated to search out trials.  NO ONE will do a better job of finding trials than you.  There is a webiste that has a clinical trial finder and support people that will help you navigate the various trials.  I'm sorry this mesage is so long, but I felt compelled to write after seeing your post and our similiarities.  Let me know if you want a copy of the report on TIL and the clinical trial finder for melanoma.  One last suggestion, checkout Joe Fornear's story at http://www.strongholdministry.org.  Joe is a 8 year stage IV mel survivor that has a ministry just for cancer patients.  Is story is nothing short of miraculous.  I am in regular communication with him and consider him part of my team. 

                      • May 10, 2011 at 5:40 pm
                      Erinmay22
                      Participant

                        Marie –

                        Sorry to hear you're going thru this.  We all know how scary it can be.  Our stories sound very similar (at least the beginning).  I had a 4.5mm nodular melanoma removed from my upper right back.(http://melanomaandthecity.blogspot.com/2011/03/warning-graphic-pictures-battle-wounds.html) shows the scar I was left with.  Like you it was NOT what I was expecting when they said I'd be left with a "sizeable defect".  Not sure how this keystone flap they did was any better than a 7" slash! 

                        But anyway – I opted not to do interferon and was trying to get in a clinical trial in Jan for Ipi when they discovered spots on my lungs.  Biopsy March 1st did confirm Melanoma so that puts me in the stage IV group.  Still trying to figure out what treatment route I take since the 2nd trial (BRAF) I was trying to get in to I don't qualify for.  I am BRAF +, but luckily my April scans showed improvement (or maybe there were just false positives before?).

                        Hang in there!  It's crazy how fast all this comes at us.  It seems like for me the surgery part was all quick – found out on a Thursday I had melanoma and Tuesday I was having the WLE and sentinel lymph node biopsy (which in my case did come back positive).  All other lymph nodes in the region were clear!  All this was done while I was switching jobs and moving from NC to NJ.  It's the deciding treatment route that seems to take so long for me! 

                        Best of luck!  Thoughts and prayers with you.
                        Erin

                      • May 10, 2011 at 4:58 pm
                      Carol Taylor
                      Participant

                        Hi Marie,

                        To make sure: is your dr at the cancer center you're going to a melanoma specialist? If so, good. If not, please ask to be transferred to one. As you're new to this, don't take it for granted, make sure. It's vital that you be in the hands of melanoma specialists from ow on and that includes your dermatologist, oncologist, and surgical onc.

                        You'll learn to deal with scars. They're bumps in the road, but you move on. And that's important that you realize you're moving through this. Try to be positive and focused, clear-headed. I read your profile, you've got a lot of great stuff going on…two young daughters, a fiance. 

                        You're at a good place here. There are some fantastically knowledgable people here when it comes to the medical aspects of melanoma.

                        words of wisdom: make sure all drs of every kind are melanoma specialists. Don't give in to panic and fear. While they can have their place in the beginning, they can also work against you. Stay clear-headed and focused. You'll need to make decisions and you'll want to be able to make the best possible ones for you. Don't sleep on your sore side. Put that fiance to work by gentllllyyyyyyy massaging around the tense area where your stitches were. A physical therapist might be of help. The pain will ease up as the healing continues.  Remember, you had a mass of tissue removed so you're not just dealing with a wound that needs to close. Concentrate on being alive! You've been through a lot and we can identitfy, but consider the alternative and give thanks.

                        Grace and peace Friend,

                        Carol stage 3b

                        • May 11, 2011 at 11:33 am
                        FormerCaregiver
                        Participant

                          Thanks for completing your profile. I see that you have just been diagnosed, and are naturally
                          feeling nervous and stressed. The people in this forum really do understand how you must
                          been feeling at the moment. I think that there is no better place for up to date info and support
                          than the forum you have just joined. So, please try not to panic as there is no urgent need to
                          decide on what treatment options you should look at.

                          I share your concerns about interferon, which is a very old drug for melanoma but its efficacy is
                          still debatable. Some doctors probably recommend it because that is what they have been
                          doing for a long time. As interferon is a difficult treatment for many people who don't have
                          pre-existing liver disease, I really feel that you should consider newer less toxic therapies
                          instead.

                          Has your doctor given you any specific pain medication?

                          Frank from Australia

                          • May 11, 2011 at 11:33 am
                          FormerCaregiver
                          Participant

                            Thanks for completing your profile. I see that you have just been diagnosed, and are naturally
                            feeling nervous and stressed. The people in this forum really do understand how you must
                            been feeling at the moment. I think that there is no better place for up to date info and support
                            than the forum you have just joined. So, please try not to panic as there is no urgent need to
                            decide on what treatment options you should look at.

                            I share your concerns about interferon, which is a very old drug for melanoma but its efficacy is
                            still debatable. Some doctors probably recommend it because that is what they have been
                            doing for a long time. As interferon is a difficult treatment for many people who don't have
                            pre-existing liver disease, I really feel that you should consider newer less toxic therapies
                            instead.

                            Has your doctor given you any specific pain medication?

                            Frank from Australia

                            • May 13, 2011 at 10:49 pm
                            MMarieMetcalfe
                            Participant

                              It never crossed my mind to see if my doctor specialized in melanoma.  This is something I will look into immediately.  I go on Tuesday for a class to discuss what is going to happen with the Interferon.  I know that my doctor stated that with my history with my liver, the benefit outweights the risk.  I see it that way, but then I don't.  I was shocked to say the least when he wanted to put me into therapy, because I am only stage IIC.  My thoughts were originally whatever will help, especially being so young.

                              It is nice to know there are other people who understand, because it has been so much information in such a short time.  Thank you…Michelle

                              • May 13, 2011 at 10:49 pm
                              MMarieMetcalfe
                              Participant

                                It never crossed my mind to see if my doctor specialized in melanoma.  This is something I will look into immediately.  I go on Tuesday for a class to discuss what is going to happen with the Interferon.  I know that my doctor stated that with my history with my liver, the benefit outweights the risk.  I see it that way, but then I don't.  I was shocked to say the least when he wanted to put me into therapy, because I am only stage IIC.  My thoughts were originally whatever will help, especially being so young.

                                It is nice to know there are other people who understand, because it has been so much information in such a short time.  Thank you…Michelle

                            Viewing 5 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