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My mom has been given 6 months to live. Can anyone help me with any information

Forums General Melanoma Community My mom has been given 6 months to live. Can anyone help me with any information

  • Post
    reyjay123
    Participant

     

     

    -The melanoma fist was found when she was 25 and they cut it out of her lower leg.
    -Now at age 55, it moved into to her limp nodes on the same leg.
    -They surgically removed the limp nodes and she had a major infection to deal with for several weeks.
    -After more biopsies and appointments they found that the cancer had moved in the form of a tumor wrap around her main artery in her leg.
    -They gave her 6 months to live and told her there is nothing else they can do.
    -I have heard of people getting through these things or at least having hope and living a longer healthier life then they would have if they had given up.  
    -My main concern is finding somewhere that treats mind body and soul.  She needs to have someone to talk to who is positive and makes her feel better, and this has not happened.
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  • Replies
      Linda/Kentucky
      Participant

      I am so sorry to hear about this for you and your mother.  I really don't know what to tell you other than don't give up, if she is willing to fight this battle help her fight with everything in her because with melanoma that's what it takes. It is a very smart booger.  I can tell you I pray for everyone going through this horrible disease and I pray you will find some answers on here.  This is a very supportive website and I visit it daily just to read all the updates.  It is also very informative as to what treatments others are going through and maybe help find something for your mother.  Just remember it is up to you and her to seek out the best options for her, stay informed and up to date on all the clinical trials and treatments.  I wish you both luck and mostly peace with this journey.

       

      Linda/Kentucky

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      Linda/Kentucky
      Participant

      I am so sorry to hear about this for you and your mother.  I really don't know what to tell you other than don't give up, if she is willing to fight this battle help her fight with everything in her because with melanoma that's what it takes. It is a very smart booger.  I can tell you I pray for everyone going through this horrible disease and I pray you will find some answers on here.  This is a very supportive website and I visit it daily just to read all the updates.  It is also very informative as to what treatments others are going through and maybe help find something for your mother.  Just remember it is up to you and her to seek out the best options for her, stay informed and up to date on all the clinical trials and treatments.  I wish you both luck and mostly peace with this journey.

       

      Linda/Kentucky

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        LynnLuc
        Participant

        Linda I am 54. I was given 6-9 months…last May 09.

        I am still here and with no evidence of disease. She should be seen by a melanoma specialist and become enrolled ina clinical trial.  James Graham Brown Cancer Center in Louisville is the only one I know of in your state…There are several here in the USA, like Moffitt in Tampa Fl,  NIH/NCI in Baltimore, MD , Sloan Kettering in New York, MD Anderson in Texas and many others…

        My oncologist gave up on me…but I didn't! I found oncologists who would work with me…I love Moffitt in Tampa Florida…but I actually live in North Dakota. We are moving to Florida soon…you do what you gotta do in order to beat the beast!

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        LynnLuc
        Participant

        Linda I am 54. I was given 6-9 months…last May 09.

        I am still here and with no evidence of disease. She should be seen by a melanoma specialist and become enrolled ina clinical trial.  James Graham Brown Cancer Center in Louisville is the only one I know of in your state…There are several here in the USA, like Moffitt in Tampa Fl,  NIH/NCI in Baltimore, MD , Sloan Kettering in New York, MD Anderson in Texas and many others…

        My oncologist gave up on me…but I didn't! I found oncologists who would work with me…I love Moffitt in Tampa Florida…but I actually live in North Dakota. We are moving to Florida soon…you do what you gotta do in order to beat the beast!

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      Sherron
      Participant

      HI, I think most here will you she needs to be seen by a Melanoma specialist, if she is not already.  Maybe, a minister or someone like can better treat her spirit and mind, and give her hope….There are many people here that will give you good advice.  Wishing you and your mother the very best.  The bulletin board has a wealth of knowledge and information on Melanoma.

      Take Care,

      Sherron, wife to Jim

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      Sherron
      Participant

      HI, I think most here will you she needs to be seen by a Melanoma specialist, if she is not already.  Maybe, a minister or someone like can better treat her spirit and mind, and give her hope….There are many people here that will give you good advice.  Wishing you and your mother the very best.  The bulletin board has a wealth of knowledge and information on Melanoma.

      Take Care,

      Sherron, wife to Jim

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      Laurie from maine
      Participant

      hi,

      Where do you live?  I am surprised they are telling her nothing they can do, I am hoping people here can help with more advice and options for her on the medical end of things.   You are right to also seek out ways to help her build hope and positive thinking, they both can help her fight. 

      I am so sorry you are both going thru this.  Keep us updated and i will pray that you and your mom find a answer.  Melanoma is a hard disease and I know it is tough on the patient but it seems to be equally tough on their family, take care.

      laurie from maine

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      Laurie from maine
      Participant

      hi,

      Where do you live?  I am surprised they are telling her nothing they can do, I am hoping people here can help with more advice and options for her on the medical end of things.   You are right to also seek out ways to help her build hope and positive thinking, they both can help her fight. 

      I am so sorry you are both going thru this.  Keep us updated and i will pray that you and your mom find a answer.  Melanoma is a hard disease and I know it is tough on the patient but it seems to be equally tough on their family, take care.

      laurie from maine

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      bill58
      Participant

      I am sorry to hear of your moms situation.  Melanoma sucks, but there are many on this board who have beaten it.  There are many more who are battling the beast and are winning. I don't know which of the Scripps hospital you are going to, but I did a quick look of melanoma clinical trials in California.  You can check this out and see what is available.

      http://www.clinicaltrials.gov/ct2/results?term=melanoma+and+california&recr=Open

      Don't give up.  There are treatment options out there, even if they can only extend things for a short while.  They might make things easier to deal with.  There are plenty of other treatment options that are available, some with better success rates than others.  Your mother should have her tumor tested for BRAF mutation or Ckit mutation.  She might have one or the other and if she does, there are trials that have success rates over 50% for providing shrinkage of tumors.  She should have her blood tested to see if she is HLA-A2 positive.  IF so, there are various vaccines and clinical trials for that option.

      Each clinical trial has different selection/exclusion criteria.  Some require prior systemic treatment, either chemo or Immuno treatment.  Others require the person to be treatment naive, having received no prior treatment.

      Another option is compassionate use Ipilimumab, but as I am learning after being diagnosed stage IV a few weeks ago, that she has to have failed some other systemic treatment for her disease. 

      There is always the old stand by's, Dacarbazine, Temador or IL2 as an initial treatment or subsequent treatment if one of the clinical trials fails.  There are probably other options available as well, but I keep on learning about them every day via this board.

      Just like the other posters have said.  If that is the response you are getting from your current oncologist, run, don't walk to another oncologist who specializes in Melanoma in your area or anywhere you are willing to travel to.  I started with a regular oncologist for 2 visits and then switched to a Melanoma specialist.  You can search through other profiles on this board to see if anyone is in your area and who their primary physician is.

      There should be general cancer support groups in your area.  Check with the American Cancer Society in your area.  There might be melanoma specific support groups as well.  There are a few organizations that can link you up with someone else who has a similar cancer diagnosis as your mom.  The organization I connected with is Immerman Angels.  http://www.imermanangels.org/

      I think they have connections around the country, but since you would correspond via email or phone, it does not matter where they live.

      I have connected with someone via Immerman Angels and also some local patients that live near me that I found on this very board.

      Good luck with your journey.  The ball is in your court.  You have to push to get the best doctors you can find and afford.

      Bill

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      bill58
      Participant

      I am sorry to hear of your moms situation.  Melanoma sucks, but there are many on this board who have beaten it.  There are many more who are battling the beast and are winning. I don't know which of the Scripps hospital you are going to, but I did a quick look of melanoma clinical trials in California.  You can check this out and see what is available.

      http://www.clinicaltrials.gov/ct2/results?term=melanoma+and+california&recr=Open

      Don't give up.  There are treatment options out there, even if they can only extend things for a short while.  They might make things easier to deal with.  There are plenty of other treatment options that are available, some with better success rates than others.  Your mother should have her tumor tested for BRAF mutation or Ckit mutation.  She might have one or the other and if she does, there are trials that have success rates over 50% for providing shrinkage of tumors.  She should have her blood tested to see if she is HLA-A2 positive.  IF so, there are various vaccines and clinical trials for that option.

      Each clinical trial has different selection/exclusion criteria.  Some require prior systemic treatment, either chemo or Immuno treatment.  Others require the person to be treatment naive, having received no prior treatment.

      Another option is compassionate use Ipilimumab, but as I am learning after being diagnosed stage IV a few weeks ago, that she has to have failed some other systemic treatment for her disease. 

      There is always the old stand by's, Dacarbazine, Temador or IL2 as an initial treatment or subsequent treatment if one of the clinical trials fails.  There are probably other options available as well, but I keep on learning about them every day via this board.

      Just like the other posters have said.  If that is the response you are getting from your current oncologist, run, don't walk to another oncologist who specializes in Melanoma in your area or anywhere you are willing to travel to.  I started with a regular oncologist for 2 visits and then switched to a Melanoma specialist.  You can search through other profiles on this board to see if anyone is in your area and who their primary physician is.

      There should be general cancer support groups in your area.  Check with the American Cancer Society in your area.  There might be melanoma specific support groups as well.  There are a few organizations that can link you up with someone else who has a similar cancer diagnosis as your mom.  The organization I connected with is Immerman Angels.  http://www.imermanangels.org/

      I think they have connections around the country, but since you would correspond via email or phone, it does not matter where they live.

      I have connected with someone via Immerman Angels and also some local patients that live near me that I found on this very board.

      Good luck with your journey.  The ball is in your court.  You have to push to get the best doctors you can find and afford.

      Bill

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      Tim–MRF
      Guest

      To echo some questions:

      –where does she live?

      –is she being seen by a person who sees a lot of advanced melanoma?

      I don't know of anyone who has been told they have six months to live and there is nothing more they can do.  I know of people who have been told they have six months to live if they do nothing.  I know of people who have been told there is nothing more that can be done, after they have gone through many, many different treatment options.

      I am not a doctor and don't know who is treating your mom, but I strongly suggest she get a second opinion, and from someone who is at the top of the game.

      That is not to say that she will be cured or that she will live longer.  But a lot of new and developing treatments are available now that have extended life for many patients and, in some cases, have led to complete remission.  Your mom may be one of those people.

      If she wants to talk to someone have her call me.  Or you can call or email me and we can set up a time to talk.

      Tim–MRF

      [email protected]

      202/347-9675

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      Tim–MRF
      Guest

      To echo some questions:

      –where does she live?

      –is she being seen by a person who sees a lot of advanced melanoma?

      I don't know of anyone who has been told they have six months to live and there is nothing more they can do.  I know of people who have been told they have six months to live if they do nothing.  I know of people who have been told there is nothing more that can be done, after they have gone through many, many different treatment options.

      I am not a doctor and don't know who is treating your mom, but I strongly suggest she get a second opinion, and from someone who is at the top of the game.

      That is not to say that she will be cured or that she will live longer.  But a lot of new and developing treatments are available now that have extended life for many patients and, in some cases, have led to complete remission.  Your mom may be one of those people.

      If she wants to talk to someone have her call me.  Or you can call or email me and we can set up a time to talk.

      Tim–MRF

      [email protected]

      202/347-9675

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      MaryD
      Participant

      I have to say that I think it is is really critical that your Mom gets seen by a specialist at a major melanoma center.  It seems way to early to give up right now without seeking second and/or third opinions.   It would be important to investigate all the surgical options, limb perfusion, and the newest treatments that are out there right now.

      I'm sure many on this board can give you some positive feedback . .please don't give up yet!

       

      Mary

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      MaryD
      Participant

      I have to say that I think it is is really critical that your Mom gets seen by a specialist at a major melanoma center.  It seems way to early to give up right now without seeking second and/or third opinions.   It would be important to investigate all the surgical options, limb perfusion, and the newest treatments that are out there right now.

      I'm sure many on this board can give you some positive feedback . .please don't give up yet!

       

      Mary

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      MaryD
      Participant

      I have to say that I think it is is really critical that your Mom gets seen by a specialist at a major melanoma center.  It seems way to early to give up right now without seeking second and/or third opinions.   It would be important to investigate all the surgical options, limb perfusion, and the newest treatments that are out there right now.

      I'm sure many on this board can give you some positive feedback . .please don't give up yet!

       

      Mary

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      MaryD
      Participant

      I have to say that I think it is is really critical that your Mom gets seen by a specialist at a major melanoma center.  It seems way to early to give up right now without seeking second and/or third opinions.   It would be important to investigate all the surgical options, limb perfusion, and the newest treatments that are out there right now.

      I'm sure many on this board can give you some positive feedback . .please don't give up yet!

       

      Mary

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      makedoandmend
      Participant

      In my humble opinion you should find the best melanoma specialist you can in a radius you are willing to travel (Md anderson in TX and sloan kettering in NYC are two good ones if you are anywhere near there) and make an appointment asap. I feel like you need a second opinion.  I feel like the top melanoma hospitals are far ahead of the pack and can offer the best and newest options.  Maybe the place you were treated just doesn't have the resources to help you.  I've only been fighting this disease for a month or so but I haven't learned that support and knowledge are two of the best weapons a person with melanoma can have.

      -pat on li

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      makedoandmend
      Participant

      In my humble opinion you should find the best melanoma specialist you can in a radius you are willing to travel (Md anderson in TX and sloan kettering in NYC are two good ones if you are anywhere near there) and make an appointment asap. I feel like you need a second opinion.  I feel like the top melanoma hospitals are far ahead of the pack and can offer the best and newest options.  Maybe the place you were treated just doesn't have the resources to help you.  I've only been fighting this disease for a month or so but I haven't learned that support and knowledge are two of the best weapons a person with melanoma can have.

      -pat on li

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      Jim M.
      Participant

      You can email my oncologist, Dr. Jeffrey Weber, from Moffitt Cancer Center in Tampa, Fl. He's one of the most knowledgeable doctors. If you email him early on a weekday morning like 7:30 AM he usually responds the same day. Eventhough he's not your mom's doctor he DOES answer emails.

       God Bless,

       Jim M.

       

       

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      Jim M.
      Participant

      You can email my oncologist, Dr. Jeffrey Weber, from Moffitt Cancer Center in Tampa, Fl. He's one of the most knowledgeable doctors. If you email him early on a weekday morning like 7:30 AM he usually responds the same day. Eventhough he's not your mom's doctor he DOES answer emails.

       God Bless,

       Jim M.

       

       

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      kthekhal
      Participant

      About me – I live in New Jersey  –  I was diagnosed with stage 3b melanoma in June 2008 on left forearm – had the primary removed and all lymph nodes also removed from the left hand – and the doctor told me that my chances of making 5 years is 30% !!

      Needless to say, I was very very depressed until I met this Yoga Guru (he is 58 years old and practicing Yoga for the last 40 years)  – he taught me various Yoga methods (postures and breathing techniques ) which brought back the confidence in me and today I am NED (since October 2008).  Yoga really does wonders in cancer patients because it treats the mind, body and soul  – but it is to be practised atleast an hour every day.

      I am willing to teach these techniques to your mother any time  – but has to be done personally (of course at no cost whatsoever !)  – if Western medicine has given up on your mother  , Yoga is the way to save her life and bring her back to health.

      If you are interested , please email me at [email protected]

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      kthekhal
      Participant

      About me – I live in New Jersey  –  I was diagnosed with stage 3b melanoma in June 2008 on left forearm – had the primary removed and all lymph nodes also removed from the left hand – and the doctor told me that my chances of making 5 years is 30% !!

      Needless to say, I was very very depressed until I met this Yoga Guru (he is 58 years old and practicing Yoga for the last 40 years)  – he taught me various Yoga methods (postures and breathing techniques ) which brought back the confidence in me and today I am NED (since October 2008).  Yoga really does wonders in cancer patients because it treats the mind, body and soul  – but it is to be practised atleast an hour every day.

      I am willing to teach these techniques to your mother any time  – but has to be done personally (of course at no cost whatsoever !)  – if Western medicine has given up on your mother  , Yoga is the way to save her life and bring her back to health.

      If you are interested , please email me at [email protected]

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      washoegal
      Participant

      Cancer Centers in or near La Jolla:

      University of California, San Diego Cancer Center
      9500 Gilman Drive
      La Jolla, CA 92093-0658
      (858) 534-7600
      (619) 543-3456
      (866) 558-7933
      Dr. Constance Naqi

      The Burnham Institute Cancer Center
      10901 North Torrey Pines Road
      La Jolla, California 92037
      (858) 646-3100
      .
      .

      Salk Institute Cancer Center
      10010 North Torrey Pines Road
      La Jolla, California 92037
      (858) 453-4100 X1386

       

      I can't recommend any of these personally but call and see if they have melanoma specialist.

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      washoegal
      Participant

      Cancer Centers in or near La Jolla:

      University of California, San Diego Cancer Center
      9500 Gilman Drive
      La Jolla, CA 92093-0658
      (858) 534-7600
      (619) 543-3456
      (866) 558-7933
      Dr. Constance Naqi

      The Burnham Institute Cancer Center
      10901 North Torrey Pines Road
      La Jolla, California 92037
      (858) 646-3100
      .
      .

      Salk Institute Cancer Center
      10010 North Torrey Pines Road
      La Jolla, California 92037
      (858) 453-4100 X1386

       

      I can't recommend any of these personally but call and see if they have melanoma specialist.

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      donswife
      Participant

      Hi – I am also surprised to hear that there is nothing that they can do. My husband's first site was his leg. He had a perfusion and infusion on the leg. It cleared all the tumours in the leg. Unfortunately, the cancer has spread above the leg and we are still faced with several options. His melanoma was treated at the Roswell Cancer Insitute in Buffalo. They are amazing. You must contact them. We also went to the Dana Farber Institute in Boston. They agreed with the leg treatment in Buffalo. We are from toronto Canada and can't say enough about our Amercian friends.

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      donswife
      Participant

      Hi – I am also surprised to hear that there is nothing that they can do. My husband's first site was his leg. He had a perfusion and infusion on the leg. It cleared all the tumours in the leg. Unfortunately, the cancer has spread above the leg and we are still faced with several options. His melanoma was treated at the Roswell Cancer Insitute in Buffalo. They are amazing. You must contact them. We also went to the Dana Farber Institute in Boston. They agreed with the leg treatment in Buffalo. We are from toronto Canada and can't say enough about our Amercian friends.

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      Sharyn
      Participant

      This is so wrong on so many fronts!   First of all, no one can predict how much time a patient has. Mine started in my leg, and I was given 3-mos to 3 yrs when I was diagnosed. That was 5 years ago, and I'm still going strong.

      Second, I agree with all the previous responders in that your Mom should consult with a melanoma specialist. If you told us where you live, someone here could likely recommend someone reputable.

      Third, there is a lot more that can be done besides giving up. Heck, it hasn't even gone to an organ yet! If this tumor is wrapped around a main artery, why not do an Isolated Limb Perfusion, or an Isolated Limb Infusion, or even amputate? I'd certainly trade my leg for an extended lifespan.

      Fourth, I doubt the infection from the lymph node dissection

      I doubt the infection from the Lymph Node Dissection has any bearing on the situation. I had an infection too, and was a long time recovering from it. It's just that the groin is a very difficult place to heal, and its location makes it prone to infection.

      Tell your mother to NOT give up, and DO get a second opinion from someone who knows about melanoma. Good luck, and let us know where you live so we can help you more.

      Hugs

      Sharyn

      Stage IV

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      Sharyn
      Participant

      This is so wrong on so many fronts!   First of all, no one can predict how much time a patient has. Mine started in my leg, and I was given 3-mos to 3 yrs when I was diagnosed. That was 5 years ago, and I'm still going strong.

      Second, I agree with all the previous responders in that your Mom should consult with a melanoma specialist. If you told us where you live, someone here could likely recommend someone reputable.

      Third, there is a lot more that can be done besides giving up. Heck, it hasn't even gone to an organ yet! If this tumor is wrapped around a main artery, why not do an Isolated Limb Perfusion, or an Isolated Limb Infusion, or even amputate? I'd certainly trade my leg for an extended lifespan.

      Fourth, I doubt the infection from the lymph node dissection

      I doubt the infection from the Lymph Node Dissection has any bearing on the situation. I had an infection too, and was a long time recovering from it. It's just that the groin is a very difficult place to heal, and its location makes it prone to infection.

      Tell your mother to NOT give up, and DO get a second opinion from someone who knows about melanoma. Good luck, and let us know where you live so we can help you more.

      Hugs

      Sharyn

      Stage IV

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      LynnLuc
      Participant

      PS… I just attened a MRF Symposium at Moffitt this past weekend and we had a guest speaker and he discussed Hyperthermic regional perfusion for melanoma of the limbs and how promising it has been. Please check this out for your mom.

      I responsed a few minutes ago but thought you were from Kentucky…sorry… 

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      LynnLuc
      Participant

      PS… I just attened a MRF Symposium at Moffitt this past weekend and we had a guest speaker and he discussed Hyperthermic regional perfusion for melanoma of the limbs and how promising it has been. Please check this out for your mom.

      I responsed a few minutes ago but thought you were from Kentucky…sorry… 

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