New to board Stage 4 survivor

This topic has 38 replies, 6 voices, and was last updated 13 years, 2 months ago by dodgedh2.

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- July 19, 2011 at 5:40 pm
- Quote
dodgedh2
Participant
I'm new to this board. I was diagnosed with Stage 4 melanoma (unknown primary) 3 years ago. Following a CT scan for an unrelated ailment, the doctor found a single tumor in my sacrum which was removed surgically and treated with a gamma knife. Since then, I have thankfully been NED. Although I am adjusting to this life changing event, I still worry that it will return. I'd like to hear from others who have survived Stage 4 and especially those who may have experienced recurrance.

I'm new to this board. I was diagnosed with Stage 4 melanoma (unknown primary) 3 years ago. Following a CT scan for an unrelated ailment, the doctor found a single tumor in my sacrum which was removed surgically and treated with a gamma knife. Since then, I have thankfully been NED. Although I am adjusting to this life changing event, I still worry that it will return. I'd like to hear from others who have survived Stage 4 and especially those who may have experienced recurrance. I'd like to know how long before recurrance, severity when it returned, and generally what I might need to expect. I realize that Stage 4 isn't good and I'm aware of the prognosis, however, I've heard of people who have been Stage 4 for decades and I'd like to hear from more that have similar circumstances.

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- - July 19, 2011 at 5:59 pm
  - Quote
  ValinMtl
  Participant
  I think you might like to 'search and find Charlie S. "Stage IV…roll call for the undead please". It has 90 replies. It's very encouraging!
  
  Charlie S
  
  11/8/2010
  
  9:25pm
  
  Val, Stage IV, currently on TIL
  - July 19, 2011 at 6:07 pm
    
    Quote
    dodgedh2
    Participant
    
    Thanks. I performed a search on the board right after posting. I found his thread and it was just what I've been looking for.
  - July 19, 2011 at 6:07 pm
    
    Quote
    dodgedh2
    Participant
    
    Thanks. I performed a search on the board right after posting. I found his thread and it was just what I've been looking for.
- - July 19, 2011 at 5:59 pm
  - Quote
  ValinMtl
  Participant
  I think you might like to 'search and find Charlie S. "Stage IV…roll call for the undead please". It has 90 replies. It's very encouraging!
  
  Charlie S
  
  11/8/2010
  
  9:25pm
  
  Val, Stage IV, currently on TIL
- - July 20, 2011 at 3:23 am
  - Quote
  Harry in Fair Oaks
  Participant
  That's great about your sacrum met. I also had a sacrum met (on scans of 2/11 and 5/11) that disappeared on my most recent scan (7/11). It was giving me referred pain in my right leg for a while – so good riddance!
  
  I'm into my 10th week of a trial of BRAF/MEK inhibitors. The drugs seemed to have shrunk and/or "disappeared" most of my bone and soft tissue mets.
  
  I'm an 11-year Stage IV survivor (diagnosed with a lung met in 2000). I was NED for more than 10-years until this February. There are many long-term Stage IV survivors lurking here. We may not all be NED (though that's a great place to be), but we're hanging in there!
  
  Best wishes,
  
  Harry
- - July 20, 2011 at 3:23 am
  - Quote
  Harry in Fair Oaks
  Participant
  That's great about your sacrum met. I also had a sacrum met (on scans of 2/11 and 5/11) that disappeared on my most recent scan (7/11). It was giving me referred pain in my right leg for a while – so good riddance!
  
  I'm into my 10th week of a trial of BRAF/MEK inhibitors. The drugs seemed to have shrunk and/or "disappeared" most of my bone and soft tissue mets.
  
  I'm an 11-year Stage IV survivor (diagnosed with a lung met in 2000). I was NED for more than 10-years until this February. There are many long-term Stage IV survivors lurking here. We may not all be NED (though that's a great place to be), but we're hanging in there!
  
  Best wishes,
  
  Harry
  - July 20, 2011 at 12:30 pm
    
    Quote
    dodgedh2
    Participant
    
    Thanks for the reply. It's good to hear that there are long term Stage 4 survivors around. My biggest worry is if and when it returns. I've been reading some of the posts on this board, and thry give me alot more hope on being around to enjoy my grandkids. I must say though, that the posts regarding SSI are scary. Are you on disability? Is there really a large problem/hassle with SSI when they call for re-evaluation? I would think that Stage 4 Melonoma wouldn't be questioned, even if classified as NED. Any experience in this issue?
  - July 20, 2011 at 12:30 pm
    
    Quote
    dodgedh2
    Participant
    
    Thanks for the reply. It's good to hear that there are long term Stage 4 survivors around. My biggest worry is if and when it returns. I've been reading some of the posts on this board, and thry give me alot more hope on being around to enjoy my grandkids. I must say though, that the posts regarding SSI are scary. Are you on disability? Is there really a large problem/hassle with SSI when they call for re-evaluation? I would think that Stage 4 Melonoma wouldn't be questioned, even if classified as NED. Any experience in this issue?
  - July 20, 2011 at 1:23 pm
    
    Quote
    lhaley
    Participant
    
    Sounds like your doing great! I'm another long term stage 4 survivor. Currently 6 weeks NED. My primary was in 79 and it metasticized in 06 – 5 years ago!
    
    I had no issue getting SSI. I worked the first 2 years but when it went to my bladder then other issues arose. While currently NED I haven't had longer then 8 months clear since 09 so right now SSI hasn't caused me any issues. There was someone that posted just in the past few weeks that has been NED for 3 years and working part time. She lost her appeal and will be loosing her SSI. I think she might still be trying.
    
    You do need to keep up with the latest drugs but I won't dwell on it. Go out, enjoy your grandkids and realize that in the past few years the treatments have come a long way. I remember during my first PET/CT in 06 the tech saying to me that there have been so many advances in melanoma since your primary in 27 years ago. I knew better. Yes, there were now 2 FDA drugs but neither were showing great response. But now, 5 years later that statement is so true!
    
    I've gone the surgery route except for a trial with Leukine. Had a scare last week and my mel specialist told me that my waiting game is over and we discussed treatments. WAs lucky and it was fatty tissue by last months excision site. Currently doing radiation to mop up cells.
    
    Grandbaby just left from an overnight visit. Life is good
    
    Linda
  - July 20, 2011 at 1:37 pm
    
    Quote
    lhaley
    Participant
    
    Just a correction. I'm on SSD, not SSI.
  - July 20, 2011 at 1:37 pm
    
    Quote
    lhaley
    Participant
    
    Just a correction. I'm on SSD, not SSI.
  - July 20, 2011 at 2:21 pm
    
    Quote
    dodgedh2
    Participant
    
    Thanks. SSD is what I meant, still learning the terms and such. I enjoy the grandkids whenever I can. Thankfully, they live close by. I'm holding off on going on disability as long as I feel well enough to work. That gives me better insurance and helps build up my pension (l one of the lucky people that still has one). I don't want to go on SSD and then lose it and have nothing.
  - July 20, 2011 at 2:21 pm
    
    Quote
    dodgedh2
    Participant
    
    Thanks. SSD is what I meant, still learning the terms and such. I enjoy the grandkids whenever I can. Thankfully, they live close by. I'm holding off on going on disability as long as I feel well enough to work. That gives me better insurance and helps build up my pension (l one of the lucky people that still has one). I don't want to go on SSD and then lose it and have nothing.
  - July 20, 2011 at 1:23 pm
    
    Quote
    lhaley
    Participant
    
    Sounds like your doing great! I'm another long term stage 4 survivor. Currently 6 weeks NED. My primary was in 79 and it metasticized in 06 – 5 years ago!
    
    I had no issue getting SSI. I worked the first 2 years but when it went to my bladder then other issues arose. While currently NED I haven't had longer then 8 months clear since 09 so right now SSI hasn't caused me any issues. There was someone that posted just in the past few weeks that has been NED for 3 years and working part time. She lost her appeal and will be loosing her SSI. I think she might still be trying.
    
    You do need to keep up with the latest drugs but I won't dwell on it. Go out, enjoy your grandkids and realize that in the past few years the treatments have come a long way. I remember during my first PET/CT in 06 the tech saying to me that there have been so many advances in melanoma since your primary in 27 years ago. I knew better. Yes, there were now 2 FDA drugs but neither were showing great response. But now, 5 years later that statement is so true!
    
    I've gone the surgery route except for a trial with Leukine. Had a scare last week and my mel specialist told me that my waiting game is over and we discussed treatments. WAs lucky and it was fatty tissue by last months excision site. Currently doing radiation to mop up cells.
    
    Grandbaby just left from an overnight visit. Life is good
    
    Linda
  - July 20, 2011 at 2:15 pm
    
    Quote
    NancyGM
    Participant
    
    After 3 years on benefits one is considered to be medically improved if NED unless one can prove one has long term impairments resulting from the cancer or the treatment. I am on my second appeal of that decision right now….However, if one had been put under the catagory of "not likely to improve" rather than "improvement possible", one would not be re-evaluated for 7 years rather than at the 3 year mark….I know it sounds crazy and makes no sense considering our prognosis. Congrats on your NED and best of luck to you.
  - July 20, 2011 at 2:26 pm
    
    Quote
    dodgedh2
    Participant
    
    Thanks for your reply. It looks like I'll have to have a serious talk with my oncologist and the patient advocates at the hospitol. Maybe they can give me more insight on how they handle their part of the decision. I'm trying to keep working as long as I can so I don't run into such problems. Once I'm out of the workforce, I don't think I'll be able to get back in. especially with this economy, my age, health, etc. And I know I won't be able to get near asa good of a benefits package these days.
  - July 20, 2011 at 3:29 pm
    
    Quote
    lhaley
    Participant
    
    Believe it or not they actually don't give a suggestion. They send in reports of scans and other records. At least that's what I was told by the person that handled my paperwork at the oncologists office.
    
    I would think since you have been working (if I'm correct) and you have been NED for 3 years they would not approve. But I might be wrong.
    
    Nancy, how do you know which category you were put in? What paperwork would I look at? I try not to call the SS office, don't want them to know I'm around. I know right now it's not a problem but I don't need the stress of thinking about a review.
    
    Linda
  - July 20, 2011 at 3:29 pm
    
    Quote
    lhaley
    Participant
    
    Believe it or not they actually don't give a suggestion. They send in reports of scans and other records. At least that's what I was told by the person that handled my paperwork at the oncologists office.
    
    I would think since you have been working (if I'm correct) and you have been NED for 3 years they would not approve. But I might be wrong.
    
    Nancy, how do you know which category you were put in? What paperwork would I look at? I try not to call the SS office, don't want them to know I'm around. I know right now it's not a problem but I don't need the stress of thinking about a review.
    
    Linda
  - July 20, 2011 at 4:22 pm
    
    Quote
    nicoli
    Participant
    
    The very first paperwork I received being approved for SSI told me the category I was in. You should have kept that paperwork cuz it is like an award letter. Read every word and see if it tells you.
    
    Nicki, Stage 3b
  - July 20, 2011 at 4:22 pm
    
    Quote
    nicoli
    Participant
    
    The very first paperwork I received being approved for SSI told me the category I was in. You should have kept that paperwork cuz it is like an award letter. Read every word and see if it tells you.
    
    Nicki, Stage 3b
  - July 20, 2011 at 5:48 pm
    
    Quote
    lhaley
    Participant
    
    Thanks Nicki, It's been awhile since read the letter. I'm 3 years. I guess they think I have a chance of improving my health! I think I'll gather my last 4 recurrances since I got the letter and just submit the info. Maybe they will leave me alone then……
  - July 20, 2011 at 5:48 pm
    
    Quote
    lhaley
    Participant
    
    Thanks Nicki, It's been awhile since read the letter. I'm 3 years. I guess they think I have a chance of improving my health! I think I'll gather my last 4 recurrances since I got the letter and just submit the info. Maybe they will leave me alone then……
  - July 20, 2011 at 6:15 pm
    
    Quote
    dodgedh2
    Participant
    
    My understanding is that Stage 4 Melanoma automatically qualifies even if you are in remission. I'm not trying to get on now, as I feel that I can still work, however, I'm trying to find out as much as I can before I HAVE to go on SSD so that I can be prepared or even avoid the stress of re-evaluation. Believe me, there are days that I wonder why I keep working and didn't file for SSD already. Everyday I work helps my family and also helps me to deal with the big Mel gorilla in the room. Otherwise I think I'd go nuts.
  - July 20, 2011 at 6:34 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    I don't think you are correct. I would be very surprised if someone who was , for example, 5 years NED and asymptomatic at the time of application would qualify for SSD. If you could show some lasting impairement from a bout with MM, it could of course be different. I'm talking about things like permanent neuropathy from chemo or nerves being cut, or loss of use of an organ or limb.
    
    Best wishes,
    
    Harry
  - July 20, 2011 at 7:45 pm
    
    Quote
    dodgedh2
    Participant
    
    I never said I was asymptomatic . In fact I do have nerve damage and reduction in use of my right leg. All I said was that I was Stage 4 NED and I choose to work as long as I can. Also, if you read my posts, I am not currently trying to get on SSD, I am only trying to find out as much as I can as to what to expect in the case I feel that it is just too much for me to keep working.
  - July 20, 2011 at 8:20 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    I know it may not be fair, but you may be doing damage to your chances to get on SSD by continuing to work. The reviewers MAY look at that as prima facia evidence that you are not disabled. Before you apply, you should make sure that your recent medical records reflect your limitations. They definitely look at your records, and those must show a disability. So if you haven't done so, complain to your docs regularly about your issues.
    
    It's different with newly diagnosed Stage IV (or even Stage III) patients. These almost automatically get approved (especially with a disabling treatment regimen), but they are reviewed in a few years and the benefits can be taken away if they are NED and with no long-term MM related issues.
    
    All the above said, the process can be fickle. Sometimes the SSD people get thing very wrong – both ways. I just don't think assumptions in this regard are safe.
    
    Best wishes,
    
    Harry
  - July 21, 2011 at 1:24 pm
    
    Quote
    dodgedh2
    Participant
    
    My records definitly show the damage and on-going complaints (nerve damage, uncontrolled leg cramps, partial loss of control, etc. etc.). I don't plan on applying unless I get to the point where I don't feel that I can work any longer, as that is the intent of SSD to begin with. As long as I'm working, it helps give me inner strength that I can survive with Mel. I've lost too many family members to varius cancers and I don't want to surrender to it myself.
  - July 21, 2011 at 1:24 pm
    
    Quote
    dodgedh2
    Participant
    
    My records definitly show the damage and on-going complaints (nerve damage, uncontrolled leg cramps, partial loss of control, etc. etc.). I don't plan on applying unless I get to the point where I don't feel that I can work any longer, as that is the intent of SSD to begin with. As long as I'm working, it helps give me inner strength that I can survive with Mel. I've lost too many family members to varius cancers and I don't want to surrender to it myself.
  - July 20, 2011 at 8:20 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    I know it may not be fair, but you may be doing damage to your chances to get on SSD by continuing to work. The reviewers MAY look at that as prima facia evidence that you are not disabled. Before you apply, you should make sure that your recent medical records reflect your limitations. They definitely look at your records, and those must show a disability. So if you haven't done so, complain to your docs regularly about your issues.
    
    It's different with newly diagnosed Stage IV (or even Stage III) patients. These almost automatically get approved (especially with a disabling treatment regimen), but they are reviewed in a few years and the benefits can be taken away if they are NED and with no long-term MM related issues.
    
    All the above said, the process can be fickle. Sometimes the SSD people get thing very wrong – both ways. I just don't think assumptions in this regard are safe.
    
    Best wishes,
    
    Harry
  - July 20, 2011 at 7:45 pm
    
    Quote
    dodgedh2
    Participant
    
    I never said I was asymptomatic . In fact I do have nerve damage and reduction in use of my right leg. All I said was that I was Stage 4 NED and I choose to work as long as I can. Also, if you read my posts, I am not currently trying to get on SSD, I am only trying to find out as much as I can as to what to expect in the case I feel that it is just too much for me to keep working.
  - July 20, 2011 at 6:34 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    I don't think you are correct. I would be very surprised if someone who was , for example, 5 years NED and asymptomatic at the time of application would qualify for SSD. If you could show some lasting impairement from a bout with MM, it could of course be different. I'm talking about things like permanent neuropathy from chemo or nerves being cut, or loss of use of an organ or limb.
    
    Best wishes,
    
    Harry
  - July 20, 2011 at 6:15 pm
    
    Quote
    dodgedh2
    Participant
    
    My understanding is that Stage 4 Melanoma automatically qualifies even if you are in remission. I'm not trying to get on now, as I feel that I can still work, however, I'm trying to find out as much as I can before I HAVE to go on SSD so that I can be prepared or even avoid the stress of re-evaluation. Believe me, there are days that I wonder why I keep working and didn't file for SSD already. Everyday I work helps my family and also helps me to deal with the big Mel gorilla in the room. Otherwise I think I'd go nuts.
  - July 20, 2011 at 2:26 pm
    
    Quote
    dodgedh2
    Participant
    
    Thanks for your reply. It looks like I'll have to have a serious talk with my oncologist and the patient advocates at the hospitol. Maybe they can give me more insight on how they handle their part of the decision. I'm trying to keep working as long as I can so I don't run into such problems. Once I'm out of the workforce, I don't think I'll be able to get back in. especially with this economy, my age, health, etc. And I know I won't be able to get near asa good of a benefits package these days.
  - July 20, 2011 at 2:15 pm
    
    Quote
    NancyGM
    Participant
    
    After 3 years on benefits one is considered to be medically improved if NED unless one can prove one has long term impairments resulting from the cancer or the treatment. I am on my second appeal of that decision right now….However, if one had been put under the catagory of "not likely to improve" rather than "improvement possible", one would not be re-evaluated for 7 years rather than at the 3 year mark….I know it sounds crazy and makes no sense considering our prognosis. Congrats on your NED and best of luck to you.
  - July 20, 2011 at 5:55 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    I have been on SSD since 2004 – I was actually something like 4 years NED at the time (though there were always small "UFOs" we were looking at in my lungs that never grew). But I did have long-term pain and stiffness in my neck and shoulder from the radical neck dissection I had in 2007. So apparently the SSD people don't look just at how long you have been NED – they also look at your ability/inability to work.
    
    They told me in 2007 that they might review, and they had me fill out a questionnaire. They wrote me back stating they would not review "at this time." That was the last I heard from them. This year I have been diagnosed with multiple bone mets, so I'm sure I would "pass" a review!
    
    Best wishes,
    
    Harry
  - July 20, 2011 at 6:02 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    Oops! I meant to say that my neck dissection was in 1997. – Harry
  - July 20, 2011 at 6:02 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    Oops! I meant to say that my neck dissection was in 1997. – Harry
  - July 20, 2011 at 5:55 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    I have been on SSD since 2004 – I was actually something like 4 years NED at the time (though there were always small "UFOs" we were looking at in my lungs that never grew). But I did have long-term pain and stiffness in my neck and shoulder from the radical neck dissection I had in 2007. So apparently the SSD people don't look just at how long you have been NED – they also look at your ability/inability to work.
    
    They told me in 2007 that they might review, and they had me fill out a questionnaire. They wrote me back stating they would not review "at this time." That was the last I heard from them. This year I have been diagnosed with multiple bone mets, so I'm sure I would "pass" a review!
    
    Best wishes,
    
    Harry