Any metastatic melanoma survivors?

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Comments

  • Terrified_mom
    Terrified_mom Member Posts: 3
    yalleh said:

    Here's one
    I have been battling for almost 5 yrs now. I had 5 tumors in my brain, 7 in my lungs and about a dozen others... Down to about half a dozen. The good news is it sounds like yours is a slow moving Melanoma but still the odds arent good. Mine is a very fast moving (uber aggresive) Melanoma.... but I'm uber stubborn and as of late have a chemo that seems to be helping. Keep up the good fight.

    Stage4 Metastastic Melanoma with Brain Metastases
    You are about as close to my son's (26yrs old)diagnoses as anyone here. He was to start a trial that was FDA approved in the USA but not yet available here except by "Special Access" namely the trial. The day he was to start we had our world come down on us and were told he had 7 brain tumours with 2wks without treatment and 2+months with to live... another doctor said with the Radiation he could have as much as 7 months. My son was EXCELLENT health before all this started in fall 2010 and at one point thought we were out of the woods but all that was happening was the hospital just never bothered to call us on the new scans last summer to say it had spread to his Ilium (one on each side) and a sub centimetre lesion within his liver... 3 months wasted before we found out.. well that was Jan 31 2012 when we got the devastating news about the brain tumours and he started Radiation immediately with the drug Decrodan (sp?) he is being weened off at the moment and last night was insanely hard. Tomorrow Valentines Day is his last Radiation treatment and honestly I have no clue what is in store after that until we see the doctor. He did tell us he could do the trial after the brain mets were treated but I have read different since then so just don't know and the emotional roller coaster is brutal for both of us. The steroid is causing rage outbursts and vomitting all kinds of thing thrush can't walk without assistance... ANY of this?? Have you gone thru?? and how are your tumours now? What other things have you tried?? Willing to swap emails/numbers to speak off the discussion boards We are currently doing fundraising to get the funds together to take my son elsewhere for better treatment as our local Cancer Clinic rank the bottom of the list and just last week the Head of Cancer Care at the hospital was let go with a hefty severance for not properly over seeing the program.. BTW WE WILL NOT GIVE UP RESEARCHING OR FIGHTING TO FIND TREATMENT ~ My son is a HARD CORE FIGHTER and we believe there's something out there ~ we just have to keep looking. God Bless everyone on here and may this disease leave your bodies so that you may all,live life with little to no limitations Chele
  • Terrified_mom
    Terrified_mom Member Posts: 3
    millard said:

    metastatis
    Yes, I have that too. Went from my arm to my axilla nodes which I had all removed. Surgeons took their time and cut around and may have spread it more. None the less for now they cannot find more cancer.

    I am a stage three c.

    I got mine around 2009 from a Mexican laser doc that used wrong laser on a birth mark. He knew not to do it but wanted the money.

    Brain cancer is a different animal. In San Diego there is a clinic that only treats brain cancer.

    How are you doing?

    Lin

    @ Metatastis (Millard )
    @ Metatastis (Millard ) PLS tell me about this San Diego clinic ~ PLSSSSSS ~ we can connect offline if you wish swap email/numbers I will give u mine if u r more comfortable that way but just pls promise to call or I can take yours We r willing to listen to anything truthful by those who have been there.
  • Nathan08
    Nathan08 Member Posts: 3

    I am David
    Stage 4 met

    I went to oncology last week and I was told the tumor in my lung was enlarged. Sarcastically said, my Dr. told me she didn't even need another Dr. to help see what she was looking at, because of the large size. That was the only laughing we were doing.

    I knew that she was right, because I have been experiencing pain in my chest, again.
    What we are not sure about is what the tumor is doing, because it is now 18 months since I had radiation in that lung and on that tumor. From what I understand 18 months is the time of radiation effects and some of this could be scar tissue or just fluid from the radiation. My oncologist told me she wasn't sure what to do at present and whether or not more radiation treatments could be done, due to the amount given previously.

    I told her I was going to my Radiation Cancer Dr. on Friday the December 9, 2011 and we would wait to find out what could be done and more test if necessary. She agreed too, so we are waiting for the next step in my living with melanoma cancer.

    Now as a side note: I went to my Eye Dr. at Duke yesterday on December 6, 2011 and again I was given news that my eye condition had deteriorated. I was told because of the radiation to my eye in 2003, my eye had more blood vessels growing inside and cutting off the ability for my eye to release fluids and therefore making my eye pressure to and in unsafe limits.

    After consultation with the Dr.'s they decided to inject a medicine in my eye to stop the blood vessels from growing and allow my eye to drain properly. Then they put another needle in my eye to extract some of the fluid that was creating the pressure. Now, when I was done with this procedure the pressure was down to almost nothing and safe. I was given a prescription for more medicine and antibiotics to prevent infection.

    I wish I could tell you how this felt, but I do not think you really want to know. They of course said they wanted me back in 6 months and that I might require more injections to fix the problem; however they weren't as optimistic as they had been in the past, because they considered this Glaucoma and I was told it was the worst stage of it and that eventually I could have my eye enucleated, if the pain became too bad. The one thing said that made me feel better was that because I am already blind in my left eye they could use laser to fix the condition or at least lessen the effects.

    I will update everyone following my condition after I see the Dr.'s on Friday. Thanks everyone for your prayers and as God has blessed me, I hope and pray for Gods' will to be done and from there I will do whatever He has planned for me.

    Please visit my website: bradleydallasnorth.net or .com

    Yervoy
    My brother Jeff has stage IV melanoma on his lungs and took his first treatment of Yervoy last week. He has to
    Have fluid drained from his lungs daily. The side effects from the Yervoy that he has experienced so far is tiredness and
    A rash on his legs. We are praying the Yervoy is working and the cancer is leaving his body.
    Anyone out there ever taken the cancer drug Yervoy. Please tell me what your experience has been with this drug. Praying for
    Everyone on this post. God bless you all.
  • Nathan08
    Nathan08 Member Posts: 3

    my husband has metastatic melanoma
    my husband has had melanoma cancer since he was 17yrs old he tried to tell his mom that he had it and she told him he was lying so he just over looked it well when he was about 27 yrs old he was out on his own and decided to start the fight on this cancer thats when he found out what type of cancer he did have when he went to get it checked on it was at stage 3 there was a mole on the side of his face the cancer tumor was wraped around his jaw, eye socket, neck and sholder and going into his tempel region that was all taken out by surgery and he went through radation treatment here locally he had about 9 months of radation then he was in remission for like 7 months it came back around his heart which means he had stage 4 melanoma they put him on IL-2 and VEGF-trap for one treatment his body did well with the IL-2 but the VEGF-trap almost blew up his heart so the stopped the treatment immedatly and after 5 months of the IL-2 treatments it stopped the cancer in its tracks from going any farther to his heart then it shot down to his adrenal glands so they put him on a treatment called Yervoy he has made it past the 4th treatment which is farther than some has made it to hes a little weak on walking and on couple of other things but hes a fighter and he will never give up willingly he will go as far as his mind and body will let him he just had a cat scan today and we go back to Pittsburgh Friday to see how they looked i pray to god that we get good news that it has been treated and is gone....my husband is now 30 yrs old and most of the drs he has seen locally has said he wouldnt have seen til the end of the month, next month, the end of this year, next year, or even see 30 well he has proved all of them wrong he will be turning 31 in August :)

    Yervoy
    Felicia, how many times did ur husband get the Yervoy treatments?
    My brother has stage IV melanoma on his lungs. He got his first treatment
    Last week. We are believing God for a miracle. Docs have given him
    25% survival rate. He's starting to feel the side affects.
  • Nathan08
    Nathan08 Member Posts: 3

    My survival is Gods' Miracle
    Jessica,

    Imagine traveling to Duke Medical Center for what is called a Hail Mary chance for life. A team of physicians, the top oncologist in the world are reviewing your case file and assessing your condition to determine what course of treatment is left or available. When they have completed their evaluation, the decision is made, there is nothing can be done to save or prolong your life.
    In 2004, I was sent home with less than 2 months to live (stage 4). The melanoma tumor which started in my left eye had metastasis throughout my lymph system, liver, lungs and brain.

    I couldn’t even be given experimental chemotherapy, because it would have no affect crossing the blood barrier in the brain. When the Dr. told me this, I looked up and said, “Thank You Lord, now You and I can work this out together.” My Dr. looked at me like I was crazy and then he told me, “They would keep me comfortable until I was gone.”
    As we left the hospital, I was in shock. I had to try and comfort my sister who had driven me that day. I was on large doses of morphine for the pain and was unable to drive myself. She was really upset about what the Dr’s. had said. I told her everything was going to be alright. Everything was in God’s hands, not mine nor the Doctor’s.
    On the way home I shut my eyes and started thinking about the things I was going to miss. I wasn’t even going to see my daughter graduate High School later that year.

    I thanked God for all the blessing’s I had had in my life. I never asked God to save my life. I did say “Lord, You know I have been all over the world helping people and if it is Your Will for me to come home, then I am ready; however if You give me the opportunity, I will write three books in Your Honor.”

    In 2005, I fulfilled my covenant with God and I am here today. I still have seven nods in my lungs. After the second book was written, my doctor’s and I realized I had had a miracle occur. All the cancer was out of my body. I was immediately tested again with cats, pets, bone scans, x-rays and labs.

    In May 2010, I had stereotactic radiation to stop the bleeding and kill the nod that grew into a tumor. I’ve had surgery, radiation, pain medicines and thank God for Dr.’s and scientist.
    The rest of this story can be found on my website: bradleydallasnorth.net

    Don't give up on God or yourself, nothing is easy about this disease.

    Your miracle
    Praise God you are here today to give others hope in
    God. My brother has had his first Yeroy treatment. It's been
    Rough on his body and docs given him 25% survival rate
    But we serve a God who gives life and life abundantly. My
    Brother has melanoma on his lungs. The lungs docs told
    Him to go home and prepare to die. His cancer doc said he
    Would try Yervoy and see what happened. My brother Jeff is
    Starting to feel the side affects like tiredness and rashes on his
    Body. We are believing for a miracle. Please pray for Jeff and
    Believe with us. Thank God I read ur blog. It has greatly
    Encouraged me. Be blessed as you walk in your healing.
  • Nathan08 said:

    Yervoy
    Felicia, how many times did ur husband get the Yervoy treatments?
    My brother has stage IV melanoma on his lungs. He got his first treatment
    Last week. We are believing God for a miracle. Docs have given him
    25% survival rate. He's starting to feel the side affects.

    Nathan08
    Well on there ther is 4 treatments every three weeks I think if i remember properly this is her husbent Frank and it can be harsh and some say it has a 25% but it dependson some aspects of the cancer so in some cases some experts say 50% no remember this drug is dangeruse can cuse memory lost,weekness, i know in one case death it cuseed a a man have a bowl burst that had a bowl sendrum allso i know on this drug you will have to report almost any thing can be agervateing and this drug you have sharp stabeing pains or a steady pain thatis unbarble they tell you to report to the er. also my wife up there got the il2 and v-trap and il2 mixed up also. Remimber one thing also docs cant tell you that you are gona decess ive been told over 100 times i was dead man walken I was told i was gona decess in a week, even one time they gave me a day locl docs arnt always the best mainly here in West Virgina.
  • Question
    I will be starting interferon A here in about two weeks, I am scared to death about it. I am 25 years old with 2 young girls , a husband who is in the military ( who will be gone for most of my battle with chemo) and family who is 12 hours away. Is this the type of chemo your on and if so what were/are your side effects? Mine was found in the back of my head with a little bit of lymph node in it. When they did the sentinel lymph node biopsy and removed the margins everything came back clear. The doctor said the chemo is a preventive measure. I am diagnosed with stage 3A. Most of the posts I've read on here says that's a high stage to have. I know your no doctor but from what your told / been through the chances of it coming back are high?

    interferon
    Flu like symptom,vomiting,muscle ache,joint pains,bacteria vomiting and outhers i remimber that much inleast.
  • Question
    I will be starting interferon A here in about two weeks, I am scared to death about it. I am 25 years old with 2 young girls , a husband who is in the military ( who will be gone for most of my battle with chemo) and family who is 12 hours away. Is this the type of chemo your on and if so what were/are your side effects? Mine was found in the back of my head with a little bit of lymph node in it. When they did the sentinel lymph node biopsy and removed the margins everything came back clear. The doctor said the chemo is a preventive measure. I am diagnosed with stage 3A. Most of the posts I've read on here says that's a high stage to have. I know your no doctor but from what your told / been through the chances of it coming back are high?

    interferon
    Flu like symptom,vomiting,muscle ache,joint pains,bacteria vomiting and outhers i remimber that much inleast.
  • Amber_17
    Amber_17 Member Posts: 3

    Nathan08
    Well on there ther is 4 treatments every three weeks I think if i remember properly this is her husbent Frank and it can be harsh and some say it has a 25% but it dependson some aspects of the cancer so in some cases some experts say 50% no remember this drug is dangeruse can cuse memory lost,weekness, i know in one case death it cuseed a a man have a bowl burst that had a bowl sendrum allso i know on this drug you will have to report almost any thing can be agervateing and this drug you have sharp stabeing pains or a steady pain thatis unbarble they tell you to report to the er. also my wife up there got the il2 and v-trap and il2 mixed up also. Remimber one thing also docs cant tell you that you are gona decess ive been told over 100 times i was dead man walken I was told i was gona decess in a week, even one time they gave me a day locl docs arnt always the best mainly here in West Virgina.

    Any Metastatic Melanoma Survivors??
    Any Metastatic Melanoma Surviors?

    Submitted by Amber_17 on March 17, 2012 - 1:11am




    Hi!
    I was 17 years old when I found out I had Metastatic Melanoma. I was shaving my legs at 15 when I cut my right leg just above the ankle, well I couldn't get it to heal right, played heck with it. It grew like a mole dose. Well two years and five doctors later, I find out its Metastatic Melanoma late Stage 3. So I go through Surgery after surgery, treament after treatment. When I was 18 doctors give me two year, again at 21 they gave 2 yrs, again at 24 doctors give me 3 months. At 25 I find out the cancer as reached the bone in that leg, doctors tell me, We apputate 6-8inch below the knee or your mom puts you in the ground? Well I allow them to take my leg, Which from what I understand the cancer is now at stage 4 and at 25 almost 26 I'm still here living life to the fullest. I'm welling to talk with anyone who want more info or just wants to talk. Feel free to messg me at anytime.
  • MemphisMargaret
    MemphisMargaret Member Posts: 18

    Stage4 Metastastic Melanoma with Brain Metastases
    You are about as close to my son's (26yrs old)diagnoses as anyone here. He was to start a trial that was FDA approved in the USA but not yet available here except by "Special Access" namely the trial. The day he was to start we had our world come down on us and were told he had 7 brain tumours with 2wks without treatment and 2+months with to live... another doctor said with the Radiation he could have as much as 7 months. My son was EXCELLENT health before all this started in fall 2010 and at one point thought we were out of the woods but all that was happening was the hospital just never bothered to call us on the new scans last summer to say it had spread to his Ilium (one on each side) and a sub centimetre lesion within his liver... 3 months wasted before we found out.. well that was Jan 31 2012 when we got the devastating news about the brain tumours and he started Radiation immediately with the drug Decrodan (sp?) he is being weened off at the moment and last night was insanely hard. Tomorrow Valentines Day is his last Radiation treatment and honestly I have no clue what is in store after that until we see the doctor. He did tell us he could do the trial after the brain mets were treated but I have read different since then so just don't know and the emotional roller coaster is brutal for both of us. The steroid is causing rage outbursts and vomitting all kinds of thing thrush can't walk without assistance... ANY of this?? Have you gone thru?? and how are your tumours now? What other things have you tried?? Willing to swap emails/numbers to speak off the discussion boards We are currently doing fundraising to get the funds together to take my son elsewhere for better treatment as our local Cancer Clinic rank the bottom of the list and just last week the Head of Cancer Care at the hospital was let go with a hefty severance for not properly over seeing the program.. BTW WE WILL NOT GIVE UP RESEARCHING OR FIGHTING TO FIND TREATMENT ~ My son is a HARD CORE FIGHTER and we believe there's something out there ~ we just have to keep looking. God Bless everyone on here and may this disease leave your bodies so that you may all,live life with little to no limitations Chele

    Stage IV Metastatic Melanoma
    My husband was diagnosed on December 19th. We start Yervoy on top of Zelboraf on Monday. We go for radiation consult on Tuesday for full brain radiation. No rage when my husband was on decadron. I sent you a friend request. Feel free to email me at gert42101@bellsouth.net and we can talk more.
  • MemphisMargaret
    MemphisMargaret Member Posts: 18
    Nathan08 said:

    Your miracle
    Praise God you are here today to give others hope in
    God. My brother has had his first Yeroy treatment. It's been
    Rough on his body and docs given him 25% survival rate
    But we serve a God who gives life and life abundantly. My
    Brother has melanoma on his lungs. The lungs docs told
    Him to go home and prepare to die. His cancer doc said he
    Would try Yervoy and see what happened. My brother Jeff is
    Starting to feel the side affects like tiredness and rashes on his
    Body. We are believing for a miracle. Please pray for Jeff and
    Believe with us. Thank God I read ur blog. It has greatly
    Encouraged me. Be blessed as you walk in your healing.

    Let's keep in touch
    My husband has his first Yervoy infusion this coming Monday. I am wondering if you would mind keeping in touch about the treatments. Be Blessed!
  • MemphisMargaret
    MemphisMargaret Member Posts: 18
    Nathan08 said:

    Yervoy
    My brother Jeff has stage IV melanoma on his lungs and took his first treatment of Yervoy last week. He has to
    Have fluid drained from his lungs daily. The side effects from the Yervoy that he has experienced so far is tiredness and
    A rash on his legs. We are praying the Yervoy is working and the cancer is leaving his body.
    Anyone out there ever taken the cancer drug Yervoy. Please tell me what your experience has been with this drug. Praying for
    Everyone on this post. God bless you all.

    Update
    Nathan,
    My husband had his first Yervoy this past Tuesday and radiation began this week as well. He is so very tired and has had some nausea. How is Jeff doing? Well I hope.
  • lmaso1
    lmaso1 Member Posts: 9

    Question
    I will be starting interferon A here in about two weeks, I am scared to death about it. I am 25 years old with 2 young girls , a husband who is in the military ( who will be gone for most of my battle with chemo) and family who is 12 hours away. Is this the type of chemo your on and if so what were/are your side effects? Mine was found in the back of my head with a little bit of lymph node in it. When they did the sentinel lymph node biopsy and removed the margins everything came back clear. The doctor said the chemo is a preventive measure. I am diagnosed with stage 3A. Most of the posts I've read on here says that's a high stage to have. I know your no doctor but from what your told / been through the chances of it coming back are high?

    Interferon
    My husband was on that for a year, he did pretty good, before each treatment he took tylenol & a benadryl. Which helped for pain & the flu like symptoms. Good luck!!!
  • lmaso1
    lmaso1 Member Posts: 9

    Stage IV Metastatic Melanoma
    My husband was diagnosed on December 19th. We start Yervoy on top of Zelboraf on Monday. We go for radiation consult on Tuesday for full brain radiation. No rage when my husband was on decadron. I sent you a friend request. Feel free to email me at gert42101@bellsouth.net and we can talk more.

    Yervoy
    My husband tried Zelboraf in the fall of 2011, but could not tolerate it. How is the Yervoy going?
  • lmaso1
    lmaso1 Member Posts: 9
    Nathan08 said:

    Yervoy
    Felicia, how many times did ur husband get the Yervoy treatments?
    My brother has stage IV melanoma on his lungs. He got his first treatment
    Last week. We are believing God for a miracle. Docs have given him
    25% survival rate. He's starting to feel the side affects.

    Yervoy
    How is your brother doing on the Yervoy, my husband starts his next week. His metastatic melanoma started last year September, he has the BRAF gene and he started the Zelboraf but was unsucessfull in being able to handle the side effects. So they took him off of it & did PET scan all clear that was in November. Found another lump in same area last month, took biopsy, again cancer was scheduled to take all lymph nodes out but PET scan showed it has spread to his lungs, liver & spine, started Yervoy, wondering how things were going with your brother. Thanks!!!
  • marlee425
    marlee425 Member Posts: 12
    yalleh said:

    Heloo ihatemelanoma
    My course of treatment is the entire gamet and all the tricks in the book known to Oncologists. I started off with an 8 inch skin removal on my back as wells as all the lymph nodes in my arm pit (from stage 2 to 3). I did 1 month of high dose Interferon followed by 12 months of the inject yourself every second day (this was Stage 3 Melanoma). The tests came back clear with no Melanoma for almost a year after Interferon. It was then found that I had progressed to stage 4, so I become a lab rat for a new trial chemotherapy. After 3 months it showed no progress so I did biochemotherapy along with 3 other known Melanoma chemotherapies (IL-2 + abraxane, decarpozine and one other ). The tumors showed no more progression but it also had not gone away. SO I stayed on Abraxane and decarpazine in the hopes that we could contain the tumors in my hilar lymph node and my upper right lung. We would then remove the lung and lymph node. The tumors did not stay contained, they were now spread all over the lungs and throughout the body (but not the brain). I then went on another trial (which by the way is the one that is working but was not approved by the FDA because it has not shown high enough success). After three months it had further progressed and was now in the brain. I was taken off the trail so that I could get stereotactic raditation in the brain. I had to wait a month (off of treatment) before I could get the radiation on three tumors. So I did the radiation (at which time I now had 5 tumors in the brain but they could only work on three of them). I was then was tested again a month later. This time it showed that the tumors operated on were stable and the other two had gone away. I was then rushed back on the trial that looked like it worked and now here I am.

    I'm sorry to say that I cant say I have beat it, I still have tumors in my lungs, brain and throughout the body, but I can say I'm in a much better position than I was almost a year ago.

    I can tell you that what helped my wife more than anything is to focus her energy on something positive. She did a walk to raise money for melanoma (the website is AIM for Melanoma). I would also suggest (coming from the side of the person with cancer) that you live in the moment, spend as much positive time with your Nana as possible and if you can only spend a little time with her make sure it is good time for both of you. I know I had to shoulder the burden of many family members and its not fun or easy to do. I know I really appreciated a smiling face and a good joke (even if the joke was at my expense.. not sure if your Nana wants you to make fun or tease her).

    Hopefully this helps and good luck for you and your loved ones

    Very Aggressive Melanoma
    My significant other has been diagnosed with a very aggressive melanoma, as well. It started with a spot on his back (misdiagnosed as a cyst by his family physician). After an appointment with a local general surgeon who did the first excision (with clear margins), we were sent to a second general surgeon for a larger excision. At the consultation, enlarged lymph nodes were found and we were off to the lab for a biopsy which indicated positive for melanoma. An MRI and PET/CT scan were ordered, showing no other hot spots other than the lymph nodes under the left arm. A second surgery was scheduled for a larger excision on the back and the removal of the nodes (17 total with 1 the size of a golf ball - 6mm - positive). Here again, clear margins. After 5 weeks of healing, we met with an oncologist and were given 3 options: Observation (not recommended); Interferon; or a clinical study with 3 arms - Interferon, Yervoy 3mg, or Yervoy 10 mg. We chose the clinical study which required another MRI and PET/CT scan. The PET/CT scan was clear; however, the MRI showed 2 spots on the brain which kicked him out of the study. The oncologist recommended Yervoy with Dacarbazine after the brain mets were taken care of. We met with a radiation oncologist who recommended stereotactic radiation. We then went to Johns Hopkins for a second opinion. Their recommendation was stereotactic radiation for the brain, but Temodor only as the chemo treatment. We opted to go with the more aggressive route of the Yervoy plus Dacarbazine. Prior to the stereotactic radiation, another MRI was ordered showing 3 spots instead of 2. The radiation procedure took place on April 11 and the first infusion of the Yervoy plus Dacarbazine took place on April 17 . . . so far, so good . . . with little or no side effects. However, our oncologist said some patients get through the first infusion and the second is the telltale.

    Is this treatment similar to what you have done?

    This is a horrible disease, showing low survival rates when I was researching and researching and researching some more.

    It has helped me to read some of the blogs and see that there are more survivors battling this disease very courageously.

    May we continue to pray, hope and believe in miracles.

    Marlee
  • marlee425
    marlee425 Member Posts: 12

    Stage4 Metastastic Melanoma with Brain Metastases
    You are about as close to my son's (26yrs old)diagnoses as anyone here. He was to start a trial that was FDA approved in the USA but not yet available here except by "Special Access" namely the trial. The day he was to start we had our world come down on us and were told he had 7 brain tumours with 2wks without treatment and 2+months with to live... another doctor said with the Radiation he could have as much as 7 months. My son was EXCELLENT health before all this started in fall 2010 and at one point thought we were out of the woods but all that was happening was the hospital just never bothered to call us on the new scans last summer to say it had spread to his Ilium (one on each side) and a sub centimetre lesion within his liver... 3 months wasted before we found out.. well that was Jan 31 2012 when we got the devastating news about the brain tumours and he started Radiation immediately with the drug Decrodan (sp?) he is being weened off at the moment and last night was insanely hard. Tomorrow Valentines Day is his last Radiation treatment and honestly I have no clue what is in store after that until we see the doctor. He did tell us he could do the trial after the brain mets were treated but I have read different since then so just don't know and the emotional roller coaster is brutal for both of us. The steroid is causing rage outbursts and vomitting all kinds of thing thrush can't walk without assistance... ANY of this?? Have you gone thru?? and how are your tumours now? What other things have you tried?? Willing to swap emails/numbers to speak off the discussion boards We are currently doing fundraising to get the funds together to take my son elsewhere for better treatment as our local Cancer Clinic rank the bottom of the list and just last week the Head of Cancer Care at the hospital was let go with a hefty severance for not properly over seeing the program.. BTW WE WILL NOT GIVE UP RESEARCHING OR FIGHTING TO FIND TREATMENT ~ My son is a HARD CORE FIGHTER and we believe there's something out there ~ we just have to keep looking. God Bless everyone on here and may this disease leave your bodies so that you may all,live life with little to no limitations Chele

    Terrified mom . . . what
    Terrified mom . . . what clinical study was your son going to participate in? My significant other was to go into a clinical study and prior to another MRI was ordered which showed 2 brain mets kicking him out of the trial. He recently underwent stereotactic radiation for the brain mets (actually 3, with another very thinly sliced MRI) and had his first infusion of Yervoy plus Dacarbazine. I, too, am terrified. May God bless all with healing.
  • marlee425
    marlee425 Member Posts: 12

    Let's keep in touch
    My husband has his first Yervoy infusion this coming Monday. I am wondering if you would mind keeping in touch about the treatments. Be Blessed!

    How is your husband doing with the Yervoy infusions?
    Memphis Margaret . . . How is your husband doing with the Yervoy infusions? My signifcant other had his first Yervoy plus Dacarbazine infusion last Tuesday. He seems to have handled the first one with few side effects . . . some lightheadedness and dizziness but nothing more. Our oncologist said some have no side effects with the first infusion; the second one is the telltale. Hope your husband is doing well!
  • mark2012
    mark2012 Member Posts: 2
    metastatic melanoma
    I was diagnosed with metastatic melanoma back in 1998. It progressed and I lost my left leg to melanoma in 2001. 1 year later it was returning at rapid rate. In March of 2002 I was told I may not see New Year's 2004. I was stage 4 melanoma and I got involved in cancer Trial at the University of Pittsburgh. It was a 1 year trial. By the grace of God and the UPMC trial I'm here! Cancer free since July of 2004. Never give up, stay positve!!
  • mark2012
    mark2012 Member Posts: 2
    Amber_17 said:

    Any Metastatic Melanoma Survivors??
    Any Metastatic Melanoma Surviors?

    Submitted by Amber_17 on March 17, 2012 - 1:11am




    Hi!
    I was 17 years old when I found out I had Metastatic Melanoma. I was shaving my legs at 15 when I cut my right leg just above the ankle, well I couldn't get it to heal right, played heck with it. It grew like a mole dose. Well two years and five doctors later, I find out its Metastatic Melanoma late Stage 3. So I go through Surgery after surgery, treament after treatment. When I was 18 doctors give me two year, again at 21 they gave 2 yrs, again at 24 doctors give me 3 months. At 25 I find out the cancer as reached the bone in that leg, doctors tell me, We apputate 6-8inch below the knee or your mom puts you in the ground? Well I allow them to take my leg, Which from what I understand the cancer is now at stage 4 and at 25 almost 26 I'm still here living life to the fullest. I'm welling to talk with anyone who want more info or just wants to talk. Feel free to messg me at anytime.

    Survivor
    Your an inspiration!!