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Brand New to This – Help me please

Forums Cutaneous Melanoma Community Brand New to This – Help me please

  • Post
    kbc123
    Participant

    Hello ~  This is totally new to me and I am looking for answers, support, sanity, sleep, not all in that order.

    Hello ~  This is totally new to me and I am looking for answers, support, sanity, sleep, not all in that order.

    I am currently in the very beginning stages of my new life-  with Melanoma.  I had a strange mole on my back that was removed last week, got the "unfortunately its Melanoma"  telephone call on Friday.  By Monday, I was seen by a doctor in our local Cancer Institute (CINJ)  who really gave me a better outlook on things, but nonetheless, I am petrified.  I am going for a lymphoscintigraphy and for more surgery to take off more skin/tumor area and I will have a lovely scar on my back ( who really cares about that anyway).   I will take all the scars they can give me, but I want my life back.

    Someone on here, please tell me I am going to get through this, because as of last night, my brain can't deal with this. Sleep is minimal, I can't turn it off. 

    I will owe you the world if someone could just give me peace of mild. 

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  • Replies
      JakeinNY
      Participant

      Hi.

      I know it sucks…been there before, but you have to wait for your doctors to conclude where things are at and what the choices for treatment or no treatment are.

      Best thing is to speak to a good psychologist about how to deal with this until you get answers.

      Obviously, the worrying and not sleeping does not help. Hopefully the psychologist can help you get your mind off of it.

      Best wishes for a long life.

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      JakeinNY
      Participant

      Hi.

      I know it sucks…been there before, but you have to wait for your doctors to conclude where things are at and what the choices for treatment or no treatment are.

      Best thing is to speak to a good psychologist about how to deal with this until you get answers.

      Obviously, the worrying and not sleeping does not help. Hopefully the psychologist can help you get your mind off of it.

      Best wishes for a long life.

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      mayeast
      Participant

      I have a similar scenario and  had surgery post lymphoscintigraphy in August . I had 9 lymph nodes under my arm removed also because the sentinel node was malignant. I researched treatment and consulted with 5 oncologists and my dermatologist. I did 16/20 treatments of Interferon at CINH Nov.-Dec. I just had repeat body scans for re-staging and I am waiting for results nervously.  I completely understand your fears. They never go away, but as time passes, they are not "all-consuming". A wonderful Nun at St. Peter's told me to "stay in the moment," not to dwell on what might be; to get through each treatment/test/procedure one at a time. That is what I have to do. I'm not always successful, but I certainly am stronger in mind and spirit. I hope that helps you,too.

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      mayeast
      Participant

      I have a similar scenario and  had surgery post lymphoscintigraphy in August . I had 9 lymph nodes under my arm removed also because the sentinel node was malignant. I researched treatment and consulted with 5 oncologists and my dermatologist. I did 16/20 treatments of Interferon at CINH Nov.-Dec. I just had repeat body scans for re-staging and I am waiting for results nervously.  I completely understand your fears. They never go away, but as time passes, they are not "all-consuming". A wonderful Nun at St. Peter's told me to "stay in the moment," not to dwell on what might be; to get through each treatment/test/procedure one at a time. That is what I have to do. I'm not always successful, but I certainly am stronger in mind and spirit. I hope that helps you,too.

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        kbc123
        Participant

        Hello Mayeast. 

        Thank you for responding to my post.  I am a nervous wreck, just a few months behind you.  STrangely enough, did you notice we live around the corner from each other and go to the same doctors?  My Doctor in CINJ is Goydos.  Very nice doctor.  I am waiting on the lymphoscintigrphy, lymphnode removal and the surgery as well for the mole area.   I

        I do agree, time is making it a bit easier, but it is on my mind, day in day out.  I have younger kids and I am not accepting the fact that this is going to take me down.  What ever treatment they hand me – so be it.  Did you see local oncologists around here? And do you have a recommended dermotologist?  I do want to check in with Univ or Penn possibly this month.  Just to clear my head of any questioning.  I am a big believer that all doctors do not treat things the same and you have to be comfortable with the type of treatment you get – physically and mentally…

        Hope you are doing well and I hope that your results are in and good news…

         

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        kbc123
        Participant

        Hello Mayeast. 

        Thank you for responding to my post.  I am a nervous wreck, just a few months behind you.  STrangely enough, did you notice we live around the corner from each other and go to the same doctors?  My Doctor in CINJ is Goydos.  Very nice doctor.  I am waiting on the lymphoscintigrphy, lymphnode removal and the surgery as well for the mole area.   I

        I do agree, time is making it a bit easier, but it is on my mind, day in day out.  I have younger kids and I am not accepting the fact that this is going to take me down.  What ever treatment they hand me – so be it.  Did you see local oncologists around here? And do you have a recommended dermotologist?  I do want to check in with Univ or Penn possibly this month.  Just to clear my head of any questioning.  I am a big believer that all doctors do not treat things the same and you have to be comfortable with the type of treatment you get – physically and mentally…

        Hope you are doing well and I hope that your results are in and good news…

         

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        mayeast
        Participant

        I was so happy to hear from you!

        My dermatologist is Dr. Jane Lee in Metuchen. She called a Melanoma doctor at Sloan-Kettering who thought I should just do the wait and watch choice, but he recommended another opinion from Dr. Anna Pavlick at NYU Cancer Center. I saw her in October and she said that although the research shows a low 7% decrease in the likelihood of recurrence of Melanoma with Interferon

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

        some people want to try any option. Unlike the 2 other oncologists I saw, Dr. Lampert and Dr. Toomey, she felt one month's treatment was enough instead of the additional 11 months of self-injecting. Dr. Pavlick contacted a former colleague, Dr. Mehnert and that is how I started my treatment at CINJ. I recommend getting a port put in because I was so glad the nurses didn't have tp do a lot of "digging" to get blood and give treatment. The nurses at CINJ are wonderful, so if you want treatment, feel secure in their care.

        My " kids" are in their 30s and I have a one-year old granddaughter, who I watch twice a week now that I finished treatment.

        Please keep in touch. We can all fight this battle together! Cheryl

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        mayeast
        Participant

        I was so happy to hear from you!

        My dermatologist is Dr. Jane Lee in Metuchen. She called a Melanoma doctor at Sloan-Kettering who thought I should just do the wait and watch choice, but he recommended another opinion from Dr. Anna Pavlick at NYU Cancer Center. I saw her in October and she said that although the research shows a low 7% decrease in the likelihood of recurrence of Melanoma with Interferon

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

        some people want to try any option. Unlike the 2 other oncologists I saw, Dr. Lampert and Dr. Toomey, she felt one month's treatment was enough instead of the additional 11 months of self-injecting. Dr. Pavlick contacted a former colleague, Dr. Mehnert and that is how I started my treatment at CINJ. I recommend getting a port put in because I was so glad the nurses didn't have tp do a lot of "digging" to get blood and give treatment. The nurses at CINJ are wonderful, so if you want treatment, feel secure in their care.

        My " kids" are in their 30s and I have a one-year old granddaughter, who I watch twice a week now that I finished treatment.

        Please keep in touch. We can all fight this battle together! Cheryl

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        kbc123
        Participant

        Hi Cheryl –

        Thank you for the info.  I have been beating myself up, do I call another just to cross my T's and dot my I's.  I decided to call University of Penn and got an appointment for next week…I dont know if I am jumping the gun, I just want to KNOW EVERYTHING There is about what I should be doing right NOW> 

        I have teenagers, so they keep me busy enough that I am not sitting here, sitting, waiting, thinking, thinking and thinking.  Its so hard to deal with this however it is a bit easier as the time goes on.  Not knowing right now I thought, was a bad thing but maybe I dont want to know? 

        I did hear good things about Dr. Lee.  That is so funny you said her name.  I was thinking of calling her for an appointment after all this settles down and I go for my three month check ups.

        You keep in touch as well.  I am ready for the fight, just getting started…

        Kathy

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        kbc123
        Participant

        Hi Cheryl –

        Thank you for the info.  I have been beating myself up, do I call another just to cross my T's and dot my I's.  I decided to call University of Penn and got an appointment for next week…I dont know if I am jumping the gun, I just want to KNOW EVERYTHING There is about what I should be doing right NOW> 

        I have teenagers, so they keep me busy enough that I am not sitting here, sitting, waiting, thinking, thinking and thinking.  Its so hard to deal with this however it is a bit easier as the time goes on.  Not knowing right now I thought, was a bad thing but maybe I dont want to know? 

        I did hear good things about Dr. Lee.  That is so funny you said her name.  I was thinking of calling her for an appointment after all this settles down and I go for my three month check ups.

        You keep in touch as well.  I am ready for the fight, just getting started…

        Kathy

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        mayeast
        Participant

        " KNOW EVERYTHING" is exactly how I feel. You have know all your options before you can make any progress combatting this cancer. Dr. Lee is hard to get into, so make sure that you tell the receptionist that you have Melanoma.I'll be looking forward to what is said at the University of PA. Cheryl

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        mayeast
        Participant

        " KNOW EVERYTHING" is exactly how I feel. You have know all your options before you can make any progress combatting this cancer. Dr. Lee is hard to get into, so make sure that you tell the receptionist that you have Melanoma.I'll be looking forward to what is said at the University of PA. Cheryl

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        kbc123
        Participant

        PS>… I think we should ALL go talk to the wonderful nun at St. Pete's – She is oh so very right….

        Will keep you posted –  Be well.

        Kathy

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        kbc123
        Participant

        PS>… I think we should ALL go talk to the wonderful nun at St. Pete's – She is oh so very right….

        Will keep you posted –  Be well.

        Kathy

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        mayeast
        Participant

        How are you doing? I am now in a clinical trial for E7080 at Morristown. I hope you are well into some good treatment.

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        mayeast
        Participant

        How are you doing? I am now in a clinical trial for E7080 at Morristown. I hope you are well into some good treatment.

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        mayeast
        Participant

        Hi.

        How are you?

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        kbc123
        Participant

        Hi !  Glad to hear from you.. Actually I am on my way to CINJ today.  I have a lump on my opposite arm that I need to get checked out.  Medi Merge tells me its a lymph node possibly but I assumed that this was probably another doctor Jumping The Gun because of the "M" diagnosis.  I called CINJ and they too think it is very unlikely but to come in. 

        I went to NYU  – wanting to see Anna Pavlik but seeing Dr.Ott because of an emergency that she was not there.  I liked him.  He was very thorough.  He sent me on to Dr. Burman in NYU who is a surgeon, questioning whether to take all of my lymph nodes out or not.  ( did i tell you that info, my sentinal node had very very small trace of cells under the staining pathology….)  CINJ is not overly worried about it and NYU is really on teh fence as well.  NYU wanted to do their own patholgoy on my slides.  That was a train-wreck.  They basically misplaced/forgot/mishandled them and I just finally got the results on Friday from them.  They are still on the fence.! 

        So back to Square One?   I am really leaning towards taking them all, just to have peace of mind? (Will we ever have peace of mind? )   I guess this decision will all rest on WHAT the hell is the lump in my other arm?  It is right on my elbow.  Not sure about it at all.  My son and daughter dermatologist told me that he would biopsy it.  Soooooo, I am assuming CINJ will tell me the same thing today.

        I can't wait until this is all behind me …

        How are you feeling?  Have you had any update since I last emailed?

        Hope all is well on your end.  And a happy belated Easter to you !

        Kathy

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        kbc123
        Participant

        Hi !  Glad to hear from you.. Actually I am on my way to CINJ today.  I have a lump on my opposite arm that I need to get checked out.  Medi Merge tells me its a lymph node possibly but I assumed that this was probably another doctor Jumping The Gun because of the "M" diagnosis.  I called CINJ and they too think it is very unlikely but to come in. 

        I went to NYU  – wanting to see Anna Pavlik but seeing Dr.Ott because of an emergency that she was not there.  I liked him.  He was very thorough.  He sent me on to Dr. Burman in NYU who is a surgeon, questioning whether to take all of my lymph nodes out or not.  ( did i tell you that info, my sentinal node had very very small trace of cells under the staining pathology….)  CINJ is not overly worried about it and NYU is really on teh fence as well.  NYU wanted to do their own patholgoy on my slides.  That was a train-wreck.  They basically misplaced/forgot/mishandled them and I just finally got the results on Friday from them.  They are still on the fence.! 

        So back to Square One?   I am really leaning towards taking them all, just to have peace of mind? (Will we ever have peace of mind? )   I guess this decision will all rest on WHAT the hell is the lump in my other arm?  It is right on my elbow.  Not sure about it at all.  My son and daughter dermatologist told me that he would biopsy it.  Soooooo, I am assuming CINJ will tell me the same thing today.

        I can't wait until this is all behind me …

        How are you feeling?  Have you had any update since I last emailed?

        Hope all is well on your end.  And a happy belated Easter to you !

        Kathy

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        mayeast
        Participant

        Hi.

        How are you?

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      filbert
      Participant

      Dear "Brand New"…

      Yes, the initial diagnosis is a real shock.   When it was given to me I really felt a blow ….our son had just gone thru oral cancer and my wife and I had seen some ugly aspects of cancer.

      I was blessed with a wife that possesses "the glass if half full" attitude which is a good thing.  You learn to take one day at a time and not dwell on the "what ifs".   I have had a number of surgeries removing tumors from the intestines, spinal chord area and still have a good sized-tumor in the right lung.   Learn what is out there for your particular situation and ask questions.  I have done Ipi treatments and IL2 and one other clinical trial (which I didn't finish because something new popped up during the course of that trial).

       

      I am stage 4 melanoma but am still here since the diagnosis 2 1/2 years ago.   I have down days but I also think it is so important to look at all the things that are going right in your life.   All I have to do is watch the nightly news at that makes me realize how good I have it!

       

      All the best,

      Phil in Vancouver, Washington

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      filbert
      Participant

      Dear "Brand New"…

      Yes, the initial diagnosis is a real shock.   When it was given to me I really felt a blow ….our son had just gone thru oral cancer and my wife and I had seen some ugly aspects of cancer.

      I was blessed with a wife that possesses "the glass if half full" attitude which is a good thing.  You learn to take one day at a time and not dwell on the "what ifs".   I have had a number of surgeries removing tumors from the intestines, spinal chord area and still have a good sized-tumor in the right lung.   Learn what is out there for your particular situation and ask questions.  I have done Ipi treatments and IL2 and one other clinical trial (which I didn't finish because something new popped up during the course of that trial).

       

      I am stage 4 melanoma but am still here since the diagnosis 2 1/2 years ago.   I have down days but I also think it is so important to look at all the things that are going right in your life.   All I have to do is watch the nightly news at that makes me realize how good I have it!

       

      All the best,

      Phil in Vancouver, Washington

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        kbc123
        Participant

        Hello Phil –

        Thank you for responding.  You have had your share of cancer as of right now, wow, what strong people you are.  To have a son with an illness, is more than enough.  I hope all is well with that.

        I am learning that questions do need to be asked.  I also need to KNOW it all .  Its a pet peeve of mine, I want to know treatments, types, surgeries, etc.. but first thing first, I need a true diagnosis and that is what is driving me crazy.  I am having the lymphoscintigraphy next week and I also have a second opinion with another facility next Thursday.   So needless to say this is consuming me. 

        You are still here, you are still fighting and God Bless you for it.  Hope this response finds you well and having a good day.

         

        Kathy

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        kbc123
        Participant

        Hello Phil –

        Thank you for responding.  You have had your share of cancer as of right now, wow, what strong people you are.  To have a son with an illness, is more than enough.  I hope all is well with that.

        I am learning that questions do need to be asked.  I also need to KNOW it all .  Its a pet peeve of mine, I want to know treatments, types, surgeries, etc.. but first thing first, I need a true diagnosis and that is what is driving me crazy.  I am having the lymphoscintigraphy next week and I also have a second opinion with another facility next Thursday.   So needless to say this is consuming me. 

        You are still here, you are still fighting and God Bless you for it.  Hope this response finds you well and having a good day.

         

        Kathy

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      mayeast
      Participant

      How are you doing? Weren't you going to PA this week? With this horrible weather everything seems to be put on hold, except the worries.

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      mayeast
      Participant

      How are you doing? Weren't you going to PA this week? With this horrible weather everything seems to be put on hold, except the worries.

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      JakeinNY
      Participant

      I see Dr. Pavlick at NYU and I would recommend her to anyone.

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      JakeinNY
      Participant

      I see Dr. Pavlick at NYU and I would recommend her to anyone.

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      Arashkya
      Participant

      Hi,

      I completely understand how you might be feeling. My melanoma was also on my back. I was diagnosed at stage 3 (weeks from stage 4) back in '08; durring a visit to my parents house in the summer. Needless to say I never left that 'vacation'. My doctors imediately told me that I wouldn't be able to return to school or my life back in San Francisco until everything was over.

      No one was able to explain anything to me, as far as how grim it was. Within the next 3 months I had surgery done on my lower back, under my right arm, and on the right side of my groin. I was given a pict line for one month after surgery for the beginning on my treatment. After that month, I was stuck with self injections of interferon for the next year.

      I would have to say that I took it a lot better than friends and family. I just always acted like it was no big deal. The doctors would fix it. So far I'm one month into my one year cancer free…. it's just hoping that it stays that way. My issue  now is that because of the effects of the interferon, my thyroid has stopped working. Now I suffer from Hypothyroidism, with a small tumor on my petuitary gland. Right now my doctors are all monotoring me to see if I may need brain surgery to remove the tumor. I have high hopes though. :)

      Just remember to stay positive. And try your best to stay busy and healthy. Time will fly by!

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      Arashkya
      Participant

      Hi,

      I completely understand how you might be feeling. My melanoma was also on my back. I was diagnosed at stage 3 (weeks from stage 4) back in '08; durring a visit to my parents house in the summer. Needless to say I never left that 'vacation'. My doctors imediately told me that I wouldn't be able to return to school or my life back in San Francisco until everything was over.

      No one was able to explain anything to me, as far as how grim it was. Within the next 3 months I had surgery done on my lower back, under my right arm, and on the right side of my groin. I was given a pict line for one month after surgery for the beginning on my treatment. After that month, I was stuck with self injections of interferon for the next year.

      I would have to say that I took it a lot better than friends and family. I just always acted like it was no big deal. The doctors would fix it. So far I'm one month into my one year cancer free…. it's just hoping that it stays that way. My issue  now is that because of the effects of the interferon, my thyroid has stopped working. Now I suffer from Hypothyroidism, with a small tumor on my petuitary gland. Right now my doctors are all monotoring me to see if I may need brain surgery to remove the tumor. I have high hopes though. :)

      Just remember to stay positive. And try your best to stay busy and healthy. Time will fly by!

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        mayeast
        Participant

        You sound very strong and I admire your attitude. I just got results of CAT scan post Interferon and a spot on my liver has to be biopsied in 2 days. I am so scared, but I'll try to keep stoies like yours as a positive approach. Thank you.

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        mayeast
        Participant

        You sound very strong and I admire your attitude. I just got results of CAT scan post Interferon and a spot on my liver has to be biopsied in 2 days. I am so scared, but I'll try to keep stoies like yours as a positive approach. Thank you.

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      JerryfromFauq
      Participant

      Hhi Kathy, I'm trying to catch up on many of the great people on here.  What is the status of having the WLE and SNB?

      Yes, this is a bother that none of us likes.  Just remember that you are an individual, not a mass statistic. 

      The number one thing is to not panic but if things go like most at the low stages, just be vigalent.  Kbow your own body and do your self checks.  I have found more tumors than the scans have for myself and though stage IV four after 3 1/2 years of mis-diagnosis by the local MD and am still 'rolling along'. 

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      JerryfromFauq
      Participant

      Hhi Kathy, I'm trying to catch up on many of the great people on here.  What is the status of having the WLE and SNB?

      Yes, this is a bother that none of us likes.  Just remember that you are an individual, not a mass statistic. 

      The number one thing is to not panic but if things go like most at the low stages, just be vigalent.  Kbow your own body and do your self checks.  I have found more tumors than the scans have for myself and though stage IV four after 3 1/2 years of mis-diagnosis by the local MD and am still 'rolling along'. 

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        kbc123
        Participant

        So, I had the surgery on my back and SNB done last week.  Now I am left to wait and wait and wait.  My surgery went well, although my bruising is horrible (looks like someone opened my arm up with a can opener.) 

        Reading daily what all are going through sometimes helps me but also sometimes hurts me.  It is very frightening to think about what tomorrow is going to bring me.  Will I be going for more treatment?  Did I catch it in time and I am watching and waiting?  All I can do is pray that I get good news next week  when I go back for my recheck ( Will they even know any results by then?)

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        kbc123
        Participant

        So, I had the surgery on my back and SNB done last week.  Now I am left to wait and wait and wait.  My surgery went well, although my bruising is horrible (looks like someone opened my arm up with a can opener.) 

        Reading daily what all are going through sometimes helps me but also sometimes hurts me.  It is very frightening to think about what tomorrow is going to bring me.  Will I be going for more treatment?  Did I catch it in time and I am watching and waiting?  All I can do is pray that I get good news next week  when I go back for my recheck ( Will they even know any results by then?)

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      washoegal
      Participant

      My heart goes out to you.  About this time last year I was in your position.  What a whirl wind. 

      My tactic was just to keep myself as busy as possible.  Luckily for me, my great husband decided that between the WLE and SNB (Wide Lateral Excision and Sentinel Node Biopsy) and having a Complete Lymph Node Removal we should go on a short cruise to use up the time in between.  I thought he was crazy, but it was a good diversion.  

      Sleep on the other hand,  is something I can't help with.  Mel will still creep into my thoughts as I try to go to sleep.  But I'm here and so far cancer free (NED). 

      This site, the American Cancer Society and if you look  at one of Janner's positing at the bottom you'll find a link, all these have good information.  You'll have decisions to make, Mel is not like many cancers, there is not an accepted protocol yet.  So you need to understand options for your particular stage.   By the way, if you are in fact, Stage 1, as you profile says than you have caught this thing very early and have every reason to be optimistic.  If you lymph nodes are clear than you should be able to dance the happpy dance!

       

      Good Luck,

      Mary

      Stage 3

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      washoegal
      Participant

      My heart goes out to you.  About this time last year I was in your position.  What a whirl wind. 

      My tactic was just to keep myself as busy as possible.  Luckily for me, my great husband decided that between the WLE and SNB (Wide Lateral Excision and Sentinel Node Biopsy) and having a Complete Lymph Node Removal we should go on a short cruise to use up the time in between.  I thought he was crazy, but it was a good diversion.  

      Sleep on the other hand,  is something I can't help with.  Mel will still creep into my thoughts as I try to go to sleep.  But I'm here and so far cancer free (NED). 

      This site, the American Cancer Society and if you look  at one of Janner's positing at the bottom you'll find a link, all these have good information.  You'll have decisions to make, Mel is not like many cancers, there is not an accepted protocol yet.  So you need to understand options for your particular stage.   By the way, if you are in fact, Stage 1, as you profile says than you have caught this thing very early and have every reason to be optimistic.  If you lymph nodes are clear than you should be able to dance the happpy dance!

       

      Good Luck,

      Mary

      Stage 3

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      Lovemymum
      Participant

      Hi kbc123,

      I'm not  a patient but a caregiver who is taking care of my mum – recently diagnosed stage 4 – brain, lungs and stomach. Her primary was on her back which began as a stage 2 about  7 years ago.

      I can't begin to imagine how you are feeling right now, I only know what I feel, the thoughts I have had as a person who loves and adores her mum and is terrified every day about what the future may hold. My mum and I have banded together and are determined to fight this beast all the way! The advice I can give you after going through this for the last 5 weeks is stay strong, stay positive, eat well, get advice from the people on this site who are going through the same thing. Maybe try meditation to help with those 'scary' thoughts. Don't ever ask for statistics, stay away from google and stay away from negative people! Most of all don't let ANYONE ever take away your hope. You will and you can get through this, everyone is different and every case is different, I have read what I think is every positive story out there and believe me there are SO many!

      I have a huge list of wonderful, inspirational posts from people on this site and others that I have put together for my mum, mostly success stories that she reads every night before she goes to bed, I know for sure that this helps with the sleepless nights, let me know if you would like me to email them through to you.

      Take care of yourself.

      xx

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        kbc123
        Participant

        Thank you so much for your words of encouragement.  It is just such a hard thing to deal with – accepting this diagnosis.  waiting patiently for results.  I am so sorry for your Mum.  I can only imagine your fear as well.  My family knows minimal ( besides my husband, sister and my own kids who only know very little)  I don't want to scare anyone as well as they can then see my fear.  I am a firm believer of not looking at statistics.  They really mean nothing.  The people I have come across on here are well past statistic time and are all an inspiration.

        I would love for you to send me whatever you have.  My email is [email protected].  Thank you again and warm wishes for your Mum as well as you.! Kathy

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        kbc123
        Participant

        Thank you so much for your words of encouragement.  It is just such a hard thing to deal with – accepting this diagnosis.  waiting patiently for results.  I am so sorry for your Mum.  I can only imagine your fear as well.  My family knows minimal ( besides my husband, sister and my own kids who only know very little)  I don't want to scare anyone as well as they can then see my fear.  I am a firm believer of not looking at statistics.  They really mean nothing.  The people I have come across on here are well past statistic time and are all an inspiration.

        I would love for you to send me whatever you have.  My email is [email protected].  Thank you again and warm wishes for your Mum as well as you.! Kathy

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        kbc123
        Participant

        Thank you so much for your words of encouragement.  It is just such a hard thing to deal with – accepting this diagnosis.  waiting patiently for results.  I am so sorry for your Mum.  I can only imagine your fear as well.  My family knows minimal ( besides my husband, sister and my own kids who only know very little)  I don't want to scare anyone as well as they can then see my fear.  I am a firm believer of not looking at statistics.  They really mean nothing.  The people I have come across on here are well past statistic time and are all an inspiration.

        I would love for you to send me whatever you have.  My email is [email protected].  Thank you again and warm wishes for your Mum as well as you.! Kathy

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        kbc123
        Participant

        Thank you so much for your words of encouragement.  It is just such a hard thing to deal with – accepting this diagnosis.  waiting patiently for results.  I am so sorry for your Mum.  I can only imagine your fear as well.  My family knows minimal ( besides my husband, sister and my own kids who only know very little)  I don't want to scare anyone as well as they can then see my fear.  I am a firm believer of not looking at statistics.  They really mean nothing.  The people I have come across on here are well past statistic time and are all an inspiration.

        I would love for you to send me whatever you have.  My email is [email protected].  Thank you again and warm wishes for your Mum as well as you.! Kathy

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        kbc123
        Participant

        Thank you so much for your words of encouragement.  It is just such a hard thing to deal with – accepting this diagnosis.  waiting patiently for results.  I am so sorry for your Mum.  I can only imagine your fear as well.  My family knows minimal ( besides my husband, sister and my own kids who only know very little)  I don't want to scare anyone as well as they can then see my fear.  I am a firm believer of not looking at statistics.  They really mean nothing.  The people I have come across on here are well past statistic time and are all an inspiration.

        I would love for you to send me whatever you have.  My email is [email protected].  Thank you again and warm wishes for your Mum as well as you.! Kathy

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        kbc123
        Participant

        Thank you so much for your words of encouragement.  It is just such a hard thing to deal with – accepting this diagnosis.  waiting patiently for results.  I am so sorry for your Mum.  I can only imagine your fear as well.  My family knows minimal ( besides my husband, sister and my own kids who only know very little)  I don't want to scare anyone as well as they can then see my fear.  I am a firm believer of not looking at statistics.  They really mean nothing.  The people I have come across on here are well past statistic time and are all an inspiration.

        I would love for you to send me whatever you have.  My email is [email protected].  Thank you again and warm wishes for your Mum as well as you.! Kathy

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        kbc123
        Participant

        Thank you so much for your words of encouragement.  It is just such a hard thing to deal with – accepting this diagnosis.  waiting patiently for results.  I am so sorry for your Mum.  I can only imagine your fear as well.  My family knows minimal ( besides my husband, sister and my own kids who only know very little)  I don't want to scare anyone as well as they can then see my fear.  I am a firm believer of not looking at statistics.  They really mean nothing.  The people I have come across on here are well past statistic time and are all an inspiration.

        I would love for you to send me whatever you have.  My email is [email protected].  Thank you again and warm wishes for your Mum as well as you.! Kathy

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        kbc123
        Participant

        Thank you so much for your words of encouragement.  It is just such a hard thing to deal with – accepting this diagnosis.  waiting patiently for results.  I am so sorry for your Mum.  I can only imagine your fear as well.  My family knows minimal ( besides my husband, sister and my own kids who only know very little)  I don't want to scare anyone as well as they can then see my fear.  I am a firm believer of not looking at statistics.  They really mean nothing.  The people I have come across on here are well past statistic time and are all an inspiration.

        I would love for you to send me whatever you have.  My email is [email protected].  Thank you again and warm wishes for your Mum as well as you.! Kathy

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      Lovemymum
      Participant

      Hi kbc123,

      I'm not  a patient but a caregiver who is taking care of my mum – recently diagnosed stage 4 – brain, lungs and stomach. Her primary was on her back which began as a stage 2 about  7 years ago.

      I can't begin to imagine how you are feeling right now, I only know what I feel, the thoughts I have had as a person who loves and adores her mum and is terrified every day about what the future may hold. My mum and I have banded together and are determined to fight this beast all the way! The advice I can give you after going through this for the last 5 weeks is stay strong, stay positive, eat well, get advice from the people on this site who are going through the same thing. Maybe try meditation to help with those 'scary' thoughts. Don't ever ask for statistics, stay away from google and stay away from negative people! Most of all don't let ANYONE ever take away your hope. You will and you can get through this, everyone is different and every case is different, I have read what I think is every positive story out there and believe me there are SO many!

      I have a huge list of wonderful, inspirational posts from people on this site and others that I have put together for my mum, mostly success stories that she reads every night before she goes to bed, I know for sure that this helps with the sleepless nights, let me know if you would like me to email them through to you.

      Take care of yourself.

      xx

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      mygirlmaddy
      Participant

      My mantra since my husband was diagnosed is that I can't control it.  No amount of worry, lost sleep and stress is going to change the outcome.  Do the research, ask A LOT of questions,  eat right, excercise,  don't accept everything you are told because it's coming from a doctor and tell yourself every day how lucky you are to be here still because at any moment the miracle cure could be discovered. 

      Best of luck to you.

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      mygirlmaddy
      Participant

      My mantra since my husband was diagnosed is that I can't control it.  No amount of worry, lost sleep and stress is going to change the outcome.  Do the research, ask A LOT of questions,  eat right, excercise,  don't accept everything you are told because it's coming from a doctor and tell yourself every day how lucky you are to be here still because at any moment the miracle cure could be discovered. 

      Best of luck to you.

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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.

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