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And Our Battle Begins!!!

Forums General Melanoma Community And Our Battle Begins!!!

  • Post
    dani_elle
    Participant
      Hello everyone
      Just thought i would share my husbands story with you all. We really dont know what to except, this is all still so new tu us.
      Let me begin by saying.. My husband has always been pretty healthy. I can honestly say i have only seen him come down with any kind of illness about 3 or 4 times in 7 years! Well it all started about 6 years ago he developed a colorless callus on his left inner heel. He noticed it growing and did get it checked out 2 different times. Drs just ordered x-rays and said it was a callus that could be caused by his work boots ( Hes a cement worker.)
      so years past by and the “callus” kept growing and started to bleed and have a smelly discharge. This is when i started to get worried. My husband was always self conscious about this “callus” and would NEVER let me see it!!! it was always covered with neosporin and a bandaid.

      So fast foward to march 2011. A dermotologist did a biopsy and on april 18 he was diagnosed with melanoma. We were told that amputation was most likely going to be the plan of care. Later that day i recieved a call from another dermatologist who explained the disease to me & advised me to begin making funeral arrangements and prepare his will !!!!! ofcourse i broke down, i was still in shock… But i managed to put on a straight face.. I had to! We have a 4 year old daughter who i refuse to raise on my own!!!! shes daddys little girl & hes my other half. I wasnt about to start planning a funeral for my 26 year old husband!!!!!

      So then next step we talked to an oncologist who answered some of our questions, referred us to a surgeon, & Ordered a CT scan. The ct scan came back normal, But it wasnt until later when i requested records
      where i read about an abnormal ct scan “lung nodule” I dont think theres anything normal about that! I asked the Dr to explain the ct scan and she said sometimes these nodules arent cancerous. Is this trueeee?!?!? well she wants to repeat the ct scan in november.

      On May 24th my husband Miguel had a wide local excision and a sentinal lymph node biopsy. His wound was left opened and hes got a wound vac over it. A nurse comes out 3 times a week for dressing changes. He didnt tolerate the negative pressure vac very well, the dressing changes were especially painful. Ive never in my life seen a man in so much pain before!!!

      We went back to the surgeons for his weekly checkup where the pathology report was given to us. It came back he had a breslow thickness of 19mm & clark level V. The margins were free of cancer so that was a relief.. Atleast his foot can b saved!! Although Melanoma cells were found in 2 of 3 lymph nodes. From what ive read this is not good at all, but i believe in GOD and nothing is impossible for him. The next step is his lymph node dissection which is scheduled for the 21st or the 1st, whichever date is available. Hes also going to have reconstruction surgery on his heel the same day. Im hoping for the best!
      I was also wondering what your opinions were on aloe vera. Alot of people reccomend it, so my husband had been drinking aloe vera gel along with supplements from Forever Living Products.

      Thanks for reading!
      Danielle <3

    Viewing 19 reply threads
    • Replies
        Wilfred
        Participant

          I am concerned about the length of time that this has taken, and is still taking, to get resolved. It appears to me that there is no sense of urgency on the part of the doctors. One of the dangers with melanoma is the speed with which it can move from place to place. Is it possible to get another Oncologist to have a look at all your records/reports and examine your husband? What hospital is he being treated in?

          Please don't see my comments as an attempt to scare you. My doctors, and my whole team stress, testing and speed. My last melanoma was confirned on 5/3/11; my wife and I were at our cottage in Canada. We left the cottage on 5/5 and went straight to Sinai Hospital in Baltimore where we met with the surgical oncology team at 11:00am on 5/6. Blood tests and xrays that day, PET/CT scan on 5/9; MRI on 5/10, surgery was done on 5/11. This was my 5th melanoma – all of them on my right ear. The results have always been the same – clear margins and good pathology in the nodes. So I'm optimistic, I would like you to be as well. And, one more thing, you are correct, God has a plan, he watches over us and he cares. May you and your husband see your daughter married and happy when she is 44.

            jbronicki
            Participant

              Hi Danielle,

               

              My husband was just diagnosed with melanoma this February and his breslow depth is 19mm and Clark level 5.  We are in Houston (Pearland) and going to MD Anderson.  I read your story and just want to say I'm thinking about you.  It's a shocking new reality we are having to live in.  I'm so sorry you have to go through this but not alone. 

               

              God Bless,

              Jackie

              jbronicki
              Participant

                Hi Danielle,

                 

                My husband was just diagnosed with melanoma this February and his breslow depth is 19mm and Clark level 5.  We are in Houston (Pearland) and going to MD Anderson.  I read your story and just want to say I'm thinking about you.  It's a shocking new reality we are having to live in.  I'm so sorry you have to go through this but not alone. 

                 

                God Bless,

                Jackie

                jbronicki
                Participant

                  Hi Danielle,

                   

                  My husband was just diagnosed with melanoma this February and his breslow depth is 19mm and Clark level 5.  We are in Houston (Pearland) and going to MD Anderson.  I read your story and just want to say I'm thinking about you.  It's a shocking new reality we are having to live in.  I'm so sorry you have to go through this but not alone. 

                   

                  God Bless,

                  Jackie

                Wilfred
                Participant

                  I am concerned about the length of time that this has taken, and is still taking, to get resolved. It appears to me that there is no sense of urgency on the part of the doctors. One of the dangers with melanoma is the speed with which it can move from place to place. Is it possible to get another Oncologist to have a look at all your records/reports and examine your husband? What hospital is he being treated in?

                  Please don't see my comments as an attempt to scare you. My doctors, and my whole team stress, testing and speed. My last melanoma was confirned on 5/3/11; my wife and I were at our cottage in Canada. We left the cottage on 5/5 and went straight to Sinai Hospital in Baltimore where we met with the surgical oncology team at 11:00am on 5/6. Blood tests and xrays that day, PET/CT scan on 5/9; MRI on 5/10, surgery was done on 5/11. This was my 5th melanoma – all of them on my right ear. The results have always been the same – clear margins and good pathology in the nodes. So I'm optimistic, I would like you to be as well. And, one more thing, you are correct, God has a plan, he watches over us and he cares. May you and your husband see your daughter married and happy when she is 44.

                  Wilfred
                  Participant

                    I am concerned about the length of time that this has taken, and is still taking, to get resolved. It appears to me that there is no sense of urgency on the part of the doctors. One of the dangers with melanoma is the speed with which it can move from place to place. Is it possible to get another Oncologist to have a look at all your records/reports and examine your husband? What hospital is he being treated in?

                    Please don't see my comments as an attempt to scare you. My doctors, and my whole team stress, testing and speed. My last melanoma was confirned on 5/3/11; my wife and I were at our cottage in Canada. We left the cottage on 5/5 and went straight to Sinai Hospital in Baltimore where we met with the surgical oncology team at 11:00am on 5/6. Blood tests and xrays that day, PET/CT scan on 5/9; MRI on 5/10, surgery was done on 5/11. This was my 5th melanoma – all of them on my right ear. The results have always been the same – clear margins and good pathology in the nodes. So I'm optimistic, I would like you to be as well. And, one more thing, you are correct, God has a plan, he watches over us and he cares. May you and your husband see your daughter married and happy when she is 44.

                    Wilfred
                    Participant

                      I am concerned about the length of time that this has taken, and is still taking, to get resolved. It appears to me that there is no sense of urgency on the part of the doctors. One of the dangers with melanoma is the speed with which it can move from place to place. Is it possible to get another Oncologist to have a look at all your records/reports and examine your husband? What hospital is he being treated in?

                      Please don't see my comments as an attempt to scare you. My doctors, and my whole team stress, testing and speed. My last melanoma was confirned on 5/3/11; my wife and I were at our cottage in Canada. We left the cottage on 5/5 and went straight to Sinai Hospital in Baltimore where we met with the surgical oncology team at 11:00am on 5/6. Blood tests and xrays that day, PET/CT scan on 5/9; MRI on 5/10, surgery was done on 5/11. This was my 5th melanoma – all of them on my right ear. The results have always been the same – clear margins and good pathology in the nodes. So I'm optimistic, I would like you to be as well. And, one more thing, you are correct, God has a plan, he watches over us and he cares. May you and your husband see your daughter married and happy when she is 44.

                      MichaelFL
                      Participant

                        Hi, and welcome to the forum where no-one wants to be a member by choice.

                        I see by your profile that you live in Houston. Are you going to a melanoma center of excellence? MD Anderson is one located there.

                        http://www.mdanderson.org/

                        I am also not a doctor, but I did not see where foot amputation would do any good as it is already in the lymph nodes.

                        Michael

                        MichaelFL
                        Participant

                          Hi, and welcome to the forum where no-one wants to be a member by choice.

                          I see by your profile that you live in Houston. Are you going to a melanoma center of excellence? MD Anderson is one located there.

                          http://www.mdanderson.org/

                          I am also not a doctor, but I did not see where foot amputation would do any good as it is already in the lymph nodes.

                          Michael

                          lhaley
                          Participant

                            Danielle,

                            I'm sorry you've had to join us but hopefully we can share some hope and information with you.

                            I see in your profile that you live in Houston.  You really need to look into MD Anderson. They are probably the top melanoma hospital in the country and you have them in your back door.  Never talk to that one dermatologist again that told you to start planning your husband's funeral!  That shows that he doesn't have  a clue.  This is serious, but many of us have found that melanoma is not a death sentence.

                            Please post on how the lymph node disection goes.  We're here for you.

                            Linda

                            Stage IV since 06

                            lhaley
                            Participant

                              Danielle,

                              I'm sorry you've had to join us but hopefully we can share some hope and information with you.

                              I see in your profile that you live in Houston.  You really need to look into MD Anderson. They are probably the top melanoma hospital in the country and you have them in your back door.  Never talk to that one dermatologist again that told you to start planning your husband's funeral!  That shows that he doesn't have  a clue.  This is serious, but many of us have found that melanoma is not a death sentence.

                              Please post on how the lymph node disection goes.  We're here for you.

                              Linda

                              Stage IV since 06

                              Carmon in NM
                              Participant

                                Hi Danielle – I'm glad you found the forum. You will find a wealth of information and support here from people who truly understand what you and your husband are experiencing.

                                To answer your question about lung nodules, yes, they can be caused by many things that aren't cancer! Especially since your husband works with concrete, they could be due to an infection or fungus. I had several show up on a CT scan while I was in the middle of chemotherapy and my oncologist told me that 30% of the population will have benign lung nodules show up on scans. So please don't worry about that one until you have a reason to!

                                Please stay in touch and let us know how things go for you both. We will all hold you up in thought and prayer.

                                Carmon in NM
                                Participant

                                  Hi Danielle – I'm glad you found the forum. You will find a wealth of information and support here from people who truly understand what you and your husband are experiencing.

                                  To answer your question about lung nodules, yes, they can be caused by many things that aren't cancer! Especially since your husband works with concrete, they could be due to an infection or fungus. I had several show up on a CT scan while I was in the middle of chemotherapy and my oncologist told me that 30% of the population will have benign lung nodules show up on scans. So please don't worry about that one until you have a reason to!

                                  Please stay in touch and let us know how things go for you both. We will all hold you up in thought and prayer.

                                  Carol Taylor
                                  Participant

                                    Hi Dani,

                                    I too am sorry you're here because your husband has melanoma, but you're at the right place. As you can tell from the other responses, we have more concerns than the aloe vera he's drinking. But, since you asked about that, I decided to see what the American Cancer Society says because I'd expect  Forever Living Products and others like them to promote them. Here's a link to what ACS says:

                                    http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/HerbsVitaminsandMinerals/aloe

                                    http://www.webmd.com/cancer/understanding-cancer-treatment

                                    I'd talk with his melanoma specialist, and I'm sure that after reading the other recommendations, that's what you're going to get…a specialist. That will be vital, Dani.

                                    Prayers for all of you.

                                    Lord, in Your mercy, we lift up Dani, Miguel, and their daughter. Open doors for him to get the best care and Your wisdom on aloe vera and any other treatment. Amen.

                                    Grace and peace,

                                    Carol

                                    Carol Taylor
                                    Participant

                                      Hi Dani,

                                      I too am sorry you're here because your husband has melanoma, but you're at the right place. As you can tell from the other responses, we have more concerns than the aloe vera he's drinking. But, since you asked about that, I decided to see what the American Cancer Society says because I'd expect  Forever Living Products and others like them to promote them. Here's a link to what ACS says:

                                      http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/HerbsVitaminsandMinerals/aloe

                                      http://www.webmd.com/cancer/understanding-cancer-treatment

                                      I'd talk with his melanoma specialist, and I'm sure that after reading the other recommendations, that's what you're going to get…a specialist. That will be vital, Dani.

                                      Prayers for all of you.

                                      Lord, in Your mercy, we lift up Dani, Miguel, and their daughter. Open doors for him to get the best care and Your wisdom on aloe vera and any other treatment. Amen.

                                      Grace and peace,

                                      Carol

                                      LynnLuc
                                      Participant

                                        I had a 6.8 centemeter melanoma in the lymph node by my superior vena cave and they gave me 6-9 months…I went to Mayo Clinic in Rochester in June 09….Here it June 2011 with stage 4 melanoma and I have no evidence of disease…honey, I believe in mercy and miracles! I cried for a couple weeks and tired to accept the diagnosis…then after that I became very busy fighting the battle my  old doctors walked away from…just because they say something doesn't make it so…The Heavenly Father made every cell and he can even count them…surely He can heal them too!!

                                        Alive, Not Dead…Lynn

                                          LynnLuc
                                          Participant

                                            PS..If you already went to MD Anderson, you can come visit me! I go to Moffitt@ Temple Terrace  (Tampa) and I have Dr Weber.

                                            LynnLuc
                                            Participant

                                              PS..If you already went to MD Anderson, you can come visit me! I go to Moffitt@ Temple Terrace  (Tampa) and I have Dr Weber.

                                            LynnLuc
                                            Participant

                                              I had a 6.8 centemeter melanoma in the lymph node by my superior vena cave and they gave me 6-9 months…I went to Mayo Clinic in Rochester in June 09….Here it June 2011 with stage 4 melanoma and I have no evidence of disease…honey, I believe in mercy and miracles! I cried for a couple weeks and tired to accept the diagnosis…then after that I became very busy fighting the battle my  old doctors walked away from…just because they say something doesn't make it so…The Heavenly Father made every cell and he can even count them…surely He can heal them too!!

                                              Alive, Not Dead…Lynn

                                              dani_elle
                                              Participant
                                                Thank you All For your posts. I am also concered about the time its taking for all the tests and surgeries And the minute i asked if there was a way they could be done sooner like STAT, I was told that it had already been there 5 years so another 2 weeks wouldnt make a difference!!!!!

                                                We are currently not at a cancer center yet. My husband doesnt have insurance so Everything is being done at Ben Taub hospital. They accept something called a gold card.I have a friend who works at MD Anderson, and is trying to see what she can do to help us out.

                                                thanks again for your words.

                                                  LynnLuc
                                                  Participant

                                                    Does he get medicaid or medicare? Moffitt takes that and if you don't and you are accepted for a trial they will write it off if your income is low. I had insurance then I lost it when we moved here for the trial…now that I am working again, I have insurance again.  Yes no one was in a hurry when I was first diagnosed…they wanted me to wait for 2 weeks just for a PFT before I saw the oncologist…husband said forget that and he called Mayo and I went in within 3 days and they never even did the PFT …I had a pulm.function test when I went to a trial about7 months later…I keep thinking if it was themselves who had cancer they might be in a little more of a rush…don't you think

                                                    LynnLuc
                                                    Participant

                                                      Does he get medicaid or medicare? Moffitt takes that and if you don't and you are accepted for a trial they will write it off if your income is low. I had insurance then I lost it when we moved here for the trial…now that I am working again, I have insurance again.  Yes no one was in a hurry when I was first diagnosed…they wanted me to wait for 2 weeks just for a PFT before I saw the oncologist…husband said forget that and he called Mayo and I went in within 3 days and they never even did the PFT …I had a pulm.function test when I went to a trial about7 months later…I keep thinking if it was themselves who had cancer they might be in a little more of a rush…don't you think

                                                      Carol Taylor
                                                      Participant

                                                        Dani,

                                                        Read this and see if you are a fit.

                                                        http://www.mdanderson.org/about-us/facts-and-history/unsponsored-charity-care/index.html

                                                        After over five years of being misdiagnosed, they ought to consider him urgent. Prayers.

                                                        Lord, in Your mercy, open doors for proper treatment for Miguel. Amen.

                                                        Grace and peace,

                                                        Carol

                                                        Carol Taylor
                                                        Participant

                                                          Dani,

                                                          Read this and see if you are a fit.

                                                          http://www.mdanderson.org/about-us/facts-and-history/unsponsored-charity-care/index.html

                                                          After over five years of being misdiagnosed, they ought to consider him urgent. Prayers.

                                                          Lord, in Your mercy, open doors for proper treatment for Miguel. Amen.

                                                          Grace and peace,

                                                          Carol

                                                        dani_elle
                                                        Participant
                                                          Thank you All For your posts. I am also concered about the time its taking for all the tests and surgeries And the minute i asked if there was a way they could be done sooner like STAT, I was told that it had already been there 5 years so another 2 weeks wouldnt make a difference!!!!!

                                                          We are currently not at a cancer center yet. My husband doesnt have insurance so Everything is being done at Ben Taub hospital. They accept something called a gold card.I have a friend who works at MD Anderson, and is trying to see what she can do to help us out.

                                                          thanks again for your words.

                                                          JerryfromFauq
                                                          Participant

                                                            Danielle, Did they give a name to the type melanoma?  Their are numerous types and the type can determmine the treatments available.  From the location they might have said something like Acral Lentigimous.  If this is the type, the tumor should have a stain test for c-kit oncoprotein and if positive it should then have a more specialized DNA mutation test.  I have the c-kit mutation and have not given up yet! 

                                                             

                                                            I was told in Feb 2007 (after 3 1/2 years of misdiagnosis) that  I would have major breathing broplems within 30 days and the 50% of stage IV people will die within six months of diagnosis, so I should get my affairs in order. 

                                                             

                                                            I do agree that when one gets to stage IV, their spouse needs to learn the information that they will need to survive without the other.  Wills, etc suddenly seemed much more important to me.  Please learn the insuranace, bills, how they are paid, what is where.  At the same time learn as much as you can about this disease, as you are doing.  I believe that MD Anderson is at a state supported school.  Most state supported medical centers have special programs to help low or no income state residents.  Do check with them.  MD Anderson is  one of the world's top cancer institutes.  I have met Dr Wen-Jen Hwu and am highly impressed.  Her husband Patrick is head of the Oncology Department there. 

                                                            I livv in Virginia and go to UVA.

                                                            You shooulod also copy what you have above into a profile so that people can readily find it for forther post to prevent your retypiing it many times. 

                                                            JerryfromFauq
                                                            Participant

                                                              Danielle, Did they give a name to the type melanoma?  Their are numerous types and the type can determmine the treatments available.  From the location they might have said something like Acral Lentigimous.  If this is the type, the tumor should have a stain test for c-kit oncoprotein and if positive it should then have a more specialized DNA mutation test.  I have the c-kit mutation and have not given up yet! 

                                                               

                                                              I was told in Feb 2007 (after 3 1/2 years of misdiagnosis) that  I would have major breathing broplems within 30 days and the 50% of stage IV people will die within six months of diagnosis, so I should get my affairs in order. 

                                                               

                                                              I do agree that when one gets to stage IV, their spouse needs to learn the information that they will need to survive without the other.  Wills, etc suddenly seemed much more important to me.  Please learn the insuranace, bills, how they are paid, what is where.  At the same time learn as much as you can about this disease, as you are doing.  I believe that MD Anderson is at a state supported school.  Most state supported medical centers have special programs to help low or no income state residents.  Do check with them.  MD Anderson is  one of the world's top cancer institutes.  I have met Dr Wen-Jen Hwu and am highly impressed.  Her husband Patrick is head of the Oncology Department there. 

                                                              I livv in Virginia and go to UVA.

                                                              You shooulod also copy what you have above into a profile so that people can readily find it for forther post to prevent your retypiing it many times. 

                                                              soniagodwin
                                                              Guest

                                                                [email protected]
                                                                Hi Dear
                                                                How are you today, I hope all is well. My name is  miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don't let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response
                                                                ([email protected])

                                                                soniagodwin
                                                                Guest

                                                                  [email protected]
                                                                  Hi Dear
                                                                  How are you today, I hope all is well. My name is  miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don't let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response
                                                                  ([email protected])

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