› Forums › General Melanoma Community › No clue how to proceed
- This topic has 30 replies, 6 voices, and was last updated 9 years, 11 months ago by
Cathy M.
- Post
-
- March 31, 2016 at 3:48 am
I will have the sutures removed this Monday from primaries 8,and 9. Primary number 7 was just a few weeks earlier . In the meantime, I have several new lesions popping up all over. Forehead , neck,back,legs,and abdomen . They all look as funky as can be…a few dark as coal. Even among my sea of a typicals the new ones stand out. I saw my primary care nurse practitioner on Monday ,who helps with biopsies between visits to the dermatologist . I told her I am now experiencing fatigue like I have never known . She asked me what the oncologist wanted to do,and I explained that he said nothing he could offer until I reached a different stage. He did send me for a pet/CT scan a couple of years ago when I was on about my 4th,or 5th primary , combined at that time, with put me on the floor pelvic bowl pain. I lit up both scans in exactly the same area of my pain. Was scoped front and back,with nothing found,and in general have only experienced that same pain a few times since. She suggested another pet scan now.
I am totally confused as what to do here. Technically I am still stage 1,but something is definitely going on. I've only been on this road for 5 ,or 6 years now but the changes on my body are speeding up. If I had Mets to anywhere would I still be throwing out all these InSitu , and stage 1 lesions ? My surgeon actually said to me after primary number 7 that I was a ticking time bomb. I actually appreciated the comment , as it seemed real,and mirrored my thinking . Then a week later we were at it again , and most likely it's going to be repeated in a couple of weeks . …..wtf ?
Appreciate any thoughts on this you all may have.
Aloha ,
Bob
- Replies
-
-
- March 31, 2016 at 7:56 am
Bob – I'm at a loss, but looked at the best source I could find – the only possibilities I see are a) just plain bad luck, multiple primary melanomas, luckily in situ, or b) epidermatrophic metastatic melanoma, which frankly I have never heard of until I looked at this source. Definition: Epidermotropic metastatic melanoma is rare. In this case, the metastases develop more superficially than usual, within the epidermis. Epidermotropic metastatic melanoma is often initially misdiagnosed as primary melanoma. The diagnosis of epidermotropic metastatic melanoma should be considered if multiple lesions arise with similar pathology. Source:
https://www.melanoma.org/comment/reply/31717#comment-form
This might be something to query with your doc – it's very rare, apparently, but if your lesions have the same pathology (whatever that means), it might be worth looking into. If for no other reason than to strike it off the list of possibilities. It's not right that you are in the dark like this, you need some certainty.
-
- March 31, 2016 at 7:56 am
Bob – I'm at a loss, but looked at the best source I could find – the only possibilities I see are a) just plain bad luck, multiple primary melanomas, luckily in situ, or b) epidermatrophic metastatic melanoma, which frankly I have never heard of until I looked at this source. Definition: Epidermotropic metastatic melanoma is rare. In this case, the metastases develop more superficially than usual, within the epidermis. Epidermotropic metastatic melanoma is often initially misdiagnosed as primary melanoma. The diagnosis of epidermotropic metastatic melanoma should be considered if multiple lesions arise with similar pathology. Source:
https://www.melanoma.org/comment/reply/31717#comment-form
This might be something to query with your doc – it's very rare, apparently, but if your lesions have the same pathology (whatever that means), it might be worth looking into. If for no other reason than to strike it off the list of possibilities. It's not right that you are in the dark like this, you need some certainty.
-
- March 31, 2016 at 7:56 am
Bob – I'm at a loss, but looked at the best source I could find – the only possibilities I see are a) just plain bad luck, multiple primary melanomas, luckily in situ, or b) epidermatrophic metastatic melanoma, which frankly I have never heard of until I looked at this source. Definition: Epidermotropic metastatic melanoma is rare. In this case, the metastases develop more superficially than usual, within the epidermis. Epidermotropic metastatic melanoma is often initially misdiagnosed as primary melanoma. The diagnosis of epidermotropic metastatic melanoma should be considered if multiple lesions arise with similar pathology. Source:
https://www.melanoma.org/comment/reply/31717#comment-form
This might be something to query with your doc – it's very rare, apparently, but if your lesions have the same pathology (whatever that means), it might be worth looking into. If for no other reason than to strike it off the list of possibilities. It's not right that you are in the dark like this, you need some certainty.
-
- March 31, 2016 at 12:04 pm
Hi Bob,
Your situation sounds very difficult and I'm sorry you have to deal with it.
It sounds to me like you're in insurance "hell." I'm not sure where your located, but your language suggests the USA – so I'll assume that.
Your problem is your treatment options are hamstrung by the insurance protocols. Similar would be true in countries with national systems. In either case, as you probably recognize, protocols don't provide for treatments at stage 1 or 2 (really). I suppose if a doctor was okay with it, you could pay to have certain more advanced protocols. The world we operate in, with many issues, is just not designed for people like you. And as much as a cure for cancer or melanoma, or whatever, would be great, the reality is, we certainly should also focus on people like you, who may be a "timebomb," but that we could do something about.
What you may want to look into are potential trials or see of your doctor would allow an off-label use. As someone mentioned above, if all the melanomas are of a similar path, you really might qualify for a lot more treatment than is apparent on its face.
My biggest advice though, is to be aggressive. It sucks, but while your hamstrung on on level, you have some time to really investigate and look for options.
Best of luck
-Justin
-
- April 1, 2016 at 8:46 am
Yes Justin , I live on the big island of Hawaii . Learning to navigate the system is at times as challenging as the disease itself for me. I take your advice to heart,and thank you for your words,and encouragement to go full steam ahead . ..which is exactly what I plan on doing .
Aloha ,
Bob
-
- April 1, 2016 at 8:46 am
Yes Justin , I live on the big island of Hawaii . Learning to navigate the system is at times as challenging as the disease itself for me. I take your advice to heart,and thank you for your words,and encouragement to go full steam ahead . ..which is exactly what I plan on doing .
Aloha ,
Bob
-
- April 1, 2016 at 8:46 am
Yes Justin , I live on the big island of Hawaii . Learning to navigate the system is at times as challenging as the disease itself for me. I take your advice to heart,and thank you for your words,and encouragement to go full steam ahead . ..which is exactly what I plan on doing .
Aloha ,
Bob
-
- March 31, 2016 at 12:04 pm
Hi Bob,
Your situation sounds very difficult and I'm sorry you have to deal with it.
It sounds to me like you're in insurance "hell." I'm not sure where your located, but your language suggests the USA – so I'll assume that.
Your problem is your treatment options are hamstrung by the insurance protocols. Similar would be true in countries with national systems. In either case, as you probably recognize, protocols don't provide for treatments at stage 1 or 2 (really). I suppose if a doctor was okay with it, you could pay to have certain more advanced protocols. The world we operate in, with many issues, is just not designed for people like you. And as much as a cure for cancer or melanoma, or whatever, would be great, the reality is, we certainly should also focus on people like you, who may be a "timebomb," but that we could do something about.
What you may want to look into are potential trials or see of your doctor would allow an off-label use. As someone mentioned above, if all the melanomas are of a similar path, you really might qualify for a lot more treatment than is apparent on its face.
My biggest advice though, is to be aggressive. It sucks, but while your hamstrung on on level, you have some time to really investigate and look for options.
Best of luck
-Justin
-
- March 31, 2016 at 12:04 pm
Hi Bob,
Your situation sounds very difficult and I'm sorry you have to deal with it.
It sounds to me like you're in insurance "hell." I'm not sure where your located, but your language suggests the USA – so I'll assume that.
Your problem is your treatment options are hamstrung by the insurance protocols. Similar would be true in countries with national systems. In either case, as you probably recognize, protocols don't provide for treatments at stage 1 or 2 (really). I suppose if a doctor was okay with it, you could pay to have certain more advanced protocols. The world we operate in, with many issues, is just not designed for people like you. And as much as a cure for cancer or melanoma, or whatever, would be great, the reality is, we certainly should also focus on people like you, who may be a "timebomb," but that we could do something about.
What you may want to look into are potential trials or see of your doctor would allow an off-label use. As someone mentioned above, if all the melanomas are of a similar path, you really might qualify for a lot more treatment than is apparent on its face.
My biggest advice though, is to be aggressive. It sucks, but while your hamstrung on on level, you have some time to really investigate and look for options.
Best of luck
-Justin
-
- March 31, 2016 at 1:03 pm
Hey Bob! Dang. Lost my original post so this is a little shorter.
This sucks, but people with DNS are much more likely to have multiple primaries than others. Didn't read the other article but I'm not sure you can chock this up to anything else but DNS. Yes, you could have something else going on with the fatigue. Depression jumps to mind first, and I can't imagine anyone not being depressed going through what is happening to you. But there also may be benign things. I had been so fatigued recently that I asked my derm to do a blood test looking for a cause (no insurance between jobs) and I was immediately admitted to the hospital. I was critically anemic. CT revealed no melanoma mets but that was the elephant in the room until ruled out. I don't see anyone offering adjuvant therapy except possibly Interferon and even that is extremely unlikely. But Interferon doesn't have great numbers. I don't see someone offering the newer drugs. Mainly, these drugs are geared for for systemic control of disease and may have zero effect on new primaries. Just thinking out loud here but I'm not sure what else to suggest. PET is a good start but I might also prefer a CT with its better resolution. Let us know if you get any more input from the medical community – sorry I really can't think of anything constructive to add to your plight. Maybe you could ask for a phone consult from one of the melanoma guys at UCSF?
Janner
-
- March 31, 2016 at 1:03 pm
Hey Bob! Dang. Lost my original post so this is a little shorter.
This sucks, but people with DNS are much more likely to have multiple primaries than others. Didn't read the other article but I'm not sure you can chock this up to anything else but DNS. Yes, you could have something else going on with the fatigue. Depression jumps to mind first, and I can't imagine anyone not being depressed going through what is happening to you. But there also may be benign things. I had been so fatigued recently that I asked my derm to do a blood test looking for a cause (no insurance between jobs) and I was immediately admitted to the hospital. I was critically anemic. CT revealed no melanoma mets but that was the elephant in the room until ruled out. I don't see anyone offering adjuvant therapy except possibly Interferon and even that is extremely unlikely. But Interferon doesn't have great numbers. I don't see someone offering the newer drugs. Mainly, these drugs are geared for for systemic control of disease and may have zero effect on new primaries. Just thinking out loud here but I'm not sure what else to suggest. PET is a good start but I might also prefer a CT with its better resolution. Let us know if you get any more input from the medical community – sorry I really can't think of anything constructive to add to your plight. Maybe you could ask for a phone consult from one of the melanoma guys at UCSF?
Janner
-
- April 1, 2016 at 8:36 am
Yeah Janner, I am definitely depressed and have been for some time,which is not all that unusual for me under normal circumstances . The fatigue I've been experiencing for many months now is out of the realm of what I would consider normal for me. Even sitting up straight does not come easy,which is something that is relatively new for me . The energy I use to maintain a good posture while sitting , or driving etc.,drains me on a scale that's different from my "normal " depression . Enough so that I question what is the cause. So many changes I am noticing has thrown me for a loop. I have tried medication in the past,but I am one of those that gets all the side effects , without enough benefits to justify continuing the meds.
Thanks as always for the support , and all you do for everyone here.
Aloha ,
Bob
-
- April 1, 2016 at 8:36 am
Yeah Janner, I am definitely depressed and have been for some time,which is not all that unusual for me under normal circumstances . The fatigue I've been experiencing for many months now is out of the realm of what I would consider normal for me. Even sitting up straight does not come easy,which is something that is relatively new for me . The energy I use to maintain a good posture while sitting , or driving etc.,drains me on a scale that's different from my "normal " depression . Enough so that I question what is the cause. So many changes I am noticing has thrown me for a loop. I have tried medication in the past,but I am one of those that gets all the side effects , without enough benefits to justify continuing the meds.
Thanks as always for the support , and all you do for everyone here.
Aloha ,
Bob
-
- April 1, 2016 at 8:36 am
Yeah Janner, I am definitely depressed and have been for some time,which is not all that unusual for me under normal circumstances . The fatigue I've been experiencing for many months now is out of the realm of what I would consider normal for me. Even sitting up straight does not come easy,which is something that is relatively new for me . The energy I use to maintain a good posture while sitting , or driving etc.,drains me on a scale that's different from my "normal " depression . Enough so that I question what is the cause. So many changes I am noticing has thrown me for a loop. I have tried medication in the past,but I am one of those that gets all the side effects , without enough benefits to justify continuing the meds.
Thanks as always for the support , and all you do for everyone here.
Aloha ,
Bob
-
- March 31, 2016 at 1:03 pm
Hey Bob! Dang. Lost my original post so this is a little shorter.
This sucks, but people with DNS are much more likely to have multiple primaries than others. Didn't read the other article but I'm not sure you can chock this up to anything else but DNS. Yes, you could have something else going on with the fatigue. Depression jumps to mind first, and I can't imagine anyone not being depressed going through what is happening to you. But there also may be benign things. I had been so fatigued recently that I asked my derm to do a blood test looking for a cause (no insurance between jobs) and I was immediately admitted to the hospital. I was critically anemic. CT revealed no melanoma mets but that was the elephant in the room until ruled out. I don't see anyone offering adjuvant therapy except possibly Interferon and even that is extremely unlikely. But Interferon doesn't have great numbers. I don't see someone offering the newer drugs. Mainly, these drugs are geared for for systemic control of disease and may have zero effect on new primaries. Just thinking out loud here but I'm not sure what else to suggest. PET is a good start but I might also prefer a CT with its better resolution. Let us know if you get any more input from the medical community – sorry I really can't think of anything constructive to add to your plight. Maybe you could ask for a phone consult from one of the melanoma guys at UCSF?
Janner
-
- April 1, 2016 at 3:07 am
I googled the information Anonymous provided and found this
http://www.ncbi.nlm.nih.gov/pubmed/7943535
It is certainly possible that you have this. In which case a PET/CT combination would be a really good idea to rule out internal metastasis.
If you do have this version of the disease, some of your skin lesions would be defined as metastasis and you would likely qualify for the newest drugs.
-
- April 1, 2016 at 3:07 am
I googled the information Anonymous provided and found this
http://www.ncbi.nlm.nih.gov/pubmed/7943535
It is certainly possible that you have this. In which case a PET/CT combination would be a really good idea to rule out internal metastasis.
If you do have this version of the disease, some of your skin lesions would be defined as metastasis and you would likely qualify for the newest drugs.
-
- April 1, 2016 at 7:54 am
Just realised I posted the wrong link. Here's my source on epidermatropic metastatic melanoma:
http://www.dermnetnz.org/lesions/metastatic-melanoma.html
It's mentioned in a tiny paragraph under heading 'cutaneous metastatic melanoma'.
I'd just like Bob to be able to get to the bottom of his troubles, and this is one option to consider and hopefully dismiss as not applying to him. .
-
- April 1, 2016 at 7:54 am
Just realised I posted the wrong link. Here's my source on epidermatropic metastatic melanoma:
http://www.dermnetnz.org/lesions/metastatic-melanoma.html
It's mentioned in a tiny paragraph under heading 'cutaneous metastatic melanoma'.
I'd just like Bob to be able to get to the bottom of his troubles, and this is one option to consider and hopefully dismiss as not applying to him. .
-
- April 1, 2016 at 8:19 am
I really appreciate the information on this. I certainly never heard of this either , and spent several hours after your original post researching it. I will go over every pathology report with my team and try to eliminate this as a possibility . I definitely fit into the defining criteria to look at this closer. My last 5 lesions have been InSitu , which from everything I read last night,and tonight , suggest that that alone as being worthy of being suspicious of this as a cause.
Many thanks
Bob
-
- April 1, 2016 at 8:19 am
I really appreciate the information on this. I certainly never heard of this either , and spent several hours after your original post researching it. I will go over every pathology report with my team and try to eliminate this as a possibility . I definitely fit into the defining criteria to look at this closer. My last 5 lesions have been InSitu , which from everything I read last night,and tonight , suggest that that alone as being worthy of being suspicious of this as a cause.
Many thanks
Bob
-
- April 1, 2016 at 8:19 am
I really appreciate the information on this. I certainly never heard of this either , and spent several hours after your original post researching it. I will go over every pathology report with my team and try to eliminate this as a possibility . I definitely fit into the defining criteria to look at this closer. My last 5 lesions have been InSitu , which from everything I read last night,and tonight , suggest that that alone as being worthy of being suspicious of this as a cause.
Many thanks
Bob
-
- April 1, 2016 at 7:54 am
Just realised I posted the wrong link. Here's my source on epidermatropic metastatic melanoma:
http://www.dermnetnz.org/lesions/metastatic-melanoma.html
It's mentioned in a tiny paragraph under heading 'cutaneous metastatic melanoma'.
I'd just like Bob to be able to get to the bottom of his troubles, and this is one option to consider and hopefully dismiss as not applying to him. .
-
- April 1, 2016 at 8:57 am
Hi Maggie. I also Googled the same thing last night on what anonymous posted. In much of what I found , it read like a description of what I am experiencing . I will move forward with the scans to start ruling out things.
Thanks a lot for the post,and I do hope you are doing , and feeling well !
Aloha ,
Bob
-
- April 1, 2016 at 8:57 am
Hi Maggie. I also Googled the same thing last night on what anonymous posted. In much of what I found , it read like a description of what I am experiencing . I will move forward with the scans to start ruling out things.
Thanks a lot for the post,and I do hope you are doing , and feeling well !
Aloha ,
Bob
-
- April 1, 2016 at 8:57 am
Hi Maggie. I also Googled the same thing last night on what anonymous posted. In much of what I found , it read like a description of what I am experiencing . I will move forward with the scans to start ruling out things.
Thanks a lot for the post,and I do hope you are doing , and feeling well !
Aloha ,
Bob
-
- April 3, 2016 at 4:44 pm
Definitely get the scan. My husband has been stage 4 since 11/2013 first just right lung. Dermatologist removed a small red spot next to his nose,a lump area from same area and one black spot from the leg. Path came back metastatic melanoma for the nose and evolving for the leg. He now has melanoma both lungs and liver. Definitely get your scan and fight from there. PET scans pick this up after melanoma has grown. Really small stuff won’t get picked up. Good luck and keep searching for answers! -
- April 3, 2016 at 4:44 pm
Definitely get the scan. My husband has been stage 4 since 11/2013 first just right lung. Dermatologist removed a small red spot next to his nose,a lump area from same area and one black spot from the leg. Path came back metastatic melanoma for the nose and evolving for the leg. He now has melanoma both lungs and liver. Definitely get your scan and fight from there. PET scans pick this up after melanoma has grown. Really small stuff won’t get picked up. Good luck and keep searching for answers! -
- April 3, 2016 at 4:44 pm
Definitely get the scan. My husband has been stage 4 since 11/2013 first just right lung. Dermatologist removed a small red spot next to his nose,a lump area from same area and one black spot from the leg. Path came back metastatic melanoma for the nose and evolving for the leg. He now has melanoma both lungs and liver. Definitely get your scan and fight from there. PET scans pick this up after melanoma has grown. Really small stuff won’t get picked up. Good luck and keep searching for answers!
-
- April 1, 2016 at 3:07 am
I googled the information Anonymous provided and found this
http://www.ncbi.nlm.nih.gov/pubmed/7943535
It is certainly possible that you have this. In which case a PET/CT combination would be a really good idea to rule out internal metastasis.
If you do have this version of the disease, some of your skin lesions would be defined as metastasis and you would likely qualify for the newest drugs.
-
- You must be logged in to reply to this topic.