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.

Needing some hope

Forums General Melanoma Community Needing some hope

  • Post
    Linda J
    Participant

    It turns out that the "infection" that 4 other doctors saw, is in fact more MM.  Nine years after the first little bugger and this literally has come back to bite me in the butt.  I am just feeling completely devestated.  It just seems so big and there are lymph nodes involved.  Is there any hope??

    I'm likely going to have to have some kind of skin grafting and a complete lymph node dissection along with radiation.  I was really looking forward to starting up a new school year (I'm a teacher and I was off last year with my son). 

    It turns out that the "infection" that 4 other doctors saw, is in fact more MM.  Nine years after the first little bugger and this literally has come back to bite me in the butt.  I am just feeling completely devestated.  It just seems so big and there are lymph nodes involved.  Is there any hope??

    I'm likely going to have to have some kind of skin grafting and a complete lymph node dissection along with radiation.  I was really looking forward to starting up a new school year (I'm a teacher and I was off last year with my son). 

    Please, if you have any stories of survival after a big MM or words of encouragement – I am really at the bottom here and I don't know how to get back up.

    Loading spinner
Viewing 6 reply threads
  • Replies
      TAC
      Participant

      I wish there were a magic bullet to make things OK but there isn't. But take heart…all is not lost. First make sure you have an oncologist who is well versed in treating melanoma. Second, if that is not the case, find one….there are lots depneding upon your location. Third, there are many trials that do offer real hope, You should get your oncologist to find one for you…IPI …is the current drug that has shown great promise. Fourth, reachout as you have done here to others and let hem help you and support you. If you don't ask they may not really know what to do or what you need. The journey will not be easy but there is HOPE and lots of it but you must be willing to learn as much as you can about melanoma and its various treatments so that you can participate with your doctors in making the decisions for you. Lastly, come here frequently even if it is to rant. We have walked in your shoes and there is lots of help, education, information and support here. Glad you found us so lean of us as you need to.

      Loading spinner
        W.
        Participant

        With respect to Ipi (Ipilimumab) be careful what trial you chose. If you take part in a trial with a placebo arm, you might get excluded from ever really getting Ipi, even much later when you do no longer take part in the original trial.

        Loading spinner
      ed_CT
      Participant

      I went Stage IV in 2005 and here I am now NED in 2010.   There is hope.   Find a good DR. at a research institution and pick a clinical trial that fits you.  I did Nexavar/Temodar.  Although it didn't turn out to be a big winner for most – it did work for me

      Best wishes

      Ed

      Loading spinner
      ed_CT
      Participant

      I went Stage IV in 2005 and here I am now NED in 2010.   There is hope.   Find a good DR. at a research institution and pick a clinical trial that fits you.  I did Nexavar/Temodar.  Although it didn't turn out to be a big winner for most – it did work for me

      Best wishes

      Ed

      Loading spinner
      Tim–MRF
      Guest

      Linda:

      I took a minute to look at your profile.  In 2003 when you wrote that you were just graduating and hoping to get into teacher's college.  Looks like you made it!

      Melanoma is tenacious, but not indestructible.  A lot has changed since you were first diagnosed.  Let me reiterate that–a LOT has changed since you were diagnosed.

      Getting to a good melanoma center is key, if it is at all possible.  Not sure where they are in Canada, but others might offer suggestions.

      If I understand your post correctly after this procedure you will still be Stage III.  This leaves a number of treatment options open to you, including a number of clinical trials.  And some of these trials are showing great promise.

      A few things to consider.  Learn as much about your tumor as possible.  Some trials are specific to people who have certain mutations in their tumor, and knowing that information can make a difference.  And take a bit of time to look into what choices are out there.  You heave heard about "ipi", but there are also vaccine trials, BRAF inhibitors, MEK inhibitors, PARP inhibitors, and the list goes on and on.

      Please keep us posted.

       

      Tim–MRF

       

       

      Loading spinner
      jim Breitfeller
      Participant

       

      "Today might be the worst day of your life…but tomorrow could be the best. You just have to get there."

      ~Unknown~

       

      http://www.box.net/shared/kjgr6dkztj

      Melanoma and the magic bullet

       

      http://melanomamissionary.blogspot.com/

      Take care and find a specialist in MELANOMA

      Loading spinner
      ValinMtl
      Participant

      Hi Linda,

      I'm so sorry you have had to come back here.  If you are still located in Ontario, I would suggest that perhaps you contact http://melanomanetwork.ca.  Annette Cyr, a melanoma survivor,  has been working closely in regards to melanoma with hospitals, in particularl, the Princess Margaret Hospital in Toronto and I am certain she can give you some guidance. Take a deep breath Linda, you can do this.  As Tim says, there has been tremendous improvements in treatment and Princess Margaret is one of the best in Canada.  Best wishes, Val in Motnreal, stage IV

      Loading spinner
      KRob
      Participant

      Linda,

      Recurrences are a shock that rock you to the core; I'm sorry that you're having to go through this again.

      My first diagnosis came in 1989, so when I moved up to stage IV sixteen years later it was a setback from which I didn't think I could recover. But here I am over 5 years later- hope does live even in the darkest moments!

      I agree with the others. Find a specialist; take control of your treatment plan; take stock in the stories of long-term survival that are here on the board.

      One more thing, besides my good response to the chemo, Temodar, I had a doctor who gave me so much hope when he told me that given the pattern of my cancer history, he thought that I had a good chance of having long stints of time between breakouts. I know that it was just a chance, but his words gave me real hope.

      My hope for you is that you find that one person who helps you believe that you have every chance to beat this, again, because you do.

      Prayers for you,

      Karen

      Loading spinner
        Linda J
        Participant

        Thank you. 

        I have been reading, and re-reading these replies every night before I go to bed.  Hope does live even in the darkest places.  I know I can beat this again! I have a great team of doctors.  The hardest part right now is just waiting for the treatment to start – I can feel the cancer and it just completely freaks me out.   I can hardly wait to start treatment and start living cancer free again.  I am a wife, a mother, a teacher and at the very bottom of that list is a cancer survivor/patient.  I will win this fight.  Thank you for your supportive words.

        Loading spinner
        Linda J
        Participant

        Thank you. 

        I have been reading, and re-reading these replies every night before I go to bed.  Hope does live even in the darkest places.  I know I can beat this again! I have a great team of doctors.  The hardest part right now is just waiting for the treatment to start – I can feel the cancer and it just completely freaks me out.   I can hardly wait to start treatment and start living cancer free again.  I am a wife, a mother, a teacher and at the very bottom of that list is a cancer survivor/patient.  I will win this fight.  Thank you for your supportive words.

        Loading spinner
Viewing 6 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.