Scared, confused, and looking for all kinds of help…

I am really sorry you had to join us.Please know that this is a wonderful  community where  you will find  a lots of support and encouragement throughout this journey.

I understand that you are looking feverishly for answers and that's  a quite  normal reaction.But I promise you that  it gets easier with the time as I came to find out;yes, I was in your shoes and trying to get all the answers on my own, but please do not apply everything you read on the Internet to your case-we are all inividuals and melanoma is such an individual disease.As to staging yourself even doctors  sometimes get it wrong-I have very rare mucosal melanoma and they are still confused about how to stage me-as mucosal is a melanoma in its own league. I was given not long to live-hey, I have my 1 year anniversary  this July 12th!!!, still alive and pretty much kicking.

I am not really sure why they never biopsied your suspicious spot;10 months after having my primary removed via 2 surgeries  and all subsequtive  scans clear, I had some suspicious cells showing via pap smear  and it came back positive after biopsy/the doctor was not even melanoma specialist but very proactive-thank you, D-r Larie Small from Maine Medical, you saved my life once again/.Currently almost completing radiation as a precauton measure.The safest  way to go  with melanoma is the  old-fashioned way-find it/ as early as possible/, cut it out.

I am puzzled as to why they never investigated the suspicious activity, moreover melanoma specialists.

Anyway there  are many wonderful people here-I call them my fellow melanoma warriors- that will come to you as they did for me with compassion and good advices.There are many people here that live very productive lives with stage 4 for years.Melanoma sounds scary because up untill recently it used to mean a certain death sentence, but not so much anymore;a progress is being made  daliy by a lots wonderful people out there , scientists and doctors who work tirelessly to find a way to effectively controll thit unpredictable disease.Especially lately there has been  an explosion in melanoma research and new promising drugs have been approved just recently /yervoy,vemurafenib/to combat the beast.

Sending your ways good wishes and positive thoughts,

Teodora

stage 3

I am really sorry you had to join us.Please know that this is a wonderful  community where  you will find  a lots of support and encouragement throughout this journey.

I understand that you are looking feverishly for answers and that's  a quite  normal reaction.But I promise you that  it gets easier with the time as I came to find out;yes, I was in your shoes and trying to get all the answers on my own, but please do not apply everything you read on the Internet to your case-we are all inividuals and melanoma is such an individual disease.As to staging yourself even doctors  sometimes get it wrong-I have very rare mucosal melanoma and they are still confused about how to stage me-as mucosal is a melanoma in its own league. I was given not long to live-hey, I have my 1 year anniversary  this July 12th!!!, still alive and pretty much kicking.

I am not really sure why they never biopsied your suspicious spot;10 months after having my primary removed via 2 surgeries  and all subsequtive  scans clear, I had some suspicious cells showing via pap smear  and it came back positive after biopsy/the doctor was not even melanoma specialist but very proactive-thank you, D-r Larie Small from Maine Medical, you saved my life once again/.Currently almost completing radiation as a precauton measure.The safest  way to go  with melanoma is the  old-fashioned way-find it/ as early as possible/, cut it out.

I am puzzled as to why they never investigated the suspicious activity, moreover melanoma specialists.

Anyway there  are many wonderful people here-I call them my fellow melanoma warriors- that will come to you as they did for me with compassion and good advices.There are many people here that live very productive lives with stage 4 for years.Melanoma sounds scary because up untill recently it used to mean a certain death sentence, but not so much anymore;a progress is being made  daliy by a lots wonderful people out there , scientists and doctors who work tirelessly to find a way to effectively controll thit unpredictable disease.Especially lately there has been  an explosion in melanoma research and new promising drugs have been approved just recently /yervoy,vemurafenib/to combat the beast.

Sending your ways good wishes and positive thoughts,

Teodora

stage 3

Take a deep breath.  Fear can paralyze you. 

There is a reason they use the term NED.  No evidence of disease. Things can be there and be small but they just don't show on the scans.  An ultrasound can give information but it is the biopsy that ultimately gives the information.  I had a spot that was showing behind the clavicle for over a year. It never changed and the SUV remained low. Finally on a scan it lit up bright. The biopsy proved to be melanoma. 

There is often suspicious things that show up on scans. If they go on a hunt everytime unfortunatelly we would be in surgery all of the time!  My Doctors have been watching lung nodules now for 7 months. They have remained stable.

Just this past week I felt a lump. It didn't show on yesterdays scans. My onc arranged for an FNA yesterday. Don't know the results yet but he told me that even if it comes back clear he feels because of the location that it needs to be removed – very close to surgery site from 4 weeks ago.  If the results from the FNA are positive I'm going systemic. This is after 5 years of watch and wait and many recurrances. I've put this off as long as I felt was safe.

If this is removed for you, and nothing else shows up, and if you are then stage IV you will be NED. That means there are little options. One thing is to ask for your hla factor to be tested – that's a blood test. There is at least 1 trial out there for people who are stage IV with HLA 0201 positive.   There is also another trial that my Doctor discussed with me yesterday. It's ippi at a different dose vs interfuron. Who knows what arm you would get.  I find it interesting that interfuron has never been recommended for stage IV but now they are using it in a trial…..

You might want to consider leaving this in if you want to do something systemic.  I know for me it took a long time to make this decision. We are each different.

Changes I made: At first I continued working and did a year in a trial of GMCSF. Was later disclosed and I did get the drug, results of the trial showed that it did not make significant difference in survival. When it came back to the bladder I decided to get rid of some stress in my life and never went back to work the day after diagnosis. That was a difficult decision and is right for some and not for others. I had been a teacher for 34 years at that point so that does make a difference.  I stay busy!  I have gone through periods of times where I have  changed my diet but ultimately I slip back to my old ways.  I do live for the moment and try to laugh as much as possible. During this journey we have moved to be closer to a grandchild and she has helped with the laughter.  What is interesting is since the move I've had many issues flare up. My onc who has now known me for several years has told us NO MORE MOVES! He comes out and says that this stress didn't help.  (we are renovating our home)

Find a support group. It helps if it is melanoma but it's not mandatory. If you go that way make sure it's a variety of cancers so the subject doesn't get bogged down onto one type of cancer.

Journaling has also helped me. That might be why so many cancer patients end up with a blog. Putting your fears down on paper does help.

Come into chat. If someone sees your name they will come in and join you.

Linda

5 year anniversary stage IV today.

Take a deep breath.  Fear can paralyze you. 

There is a reason they use the term NED.  No evidence of disease. Things can be there and be small but they just don't show on the scans.  An ultrasound can give information but it is the biopsy that ultimately gives the information.  I had a spot that was showing behind the clavicle for over a year. It never changed and the SUV remained low. Finally on a scan it lit up bright. The biopsy proved to be melanoma. 

There is often suspicious things that show up on scans. If they go on a hunt everytime unfortunatelly we would be in surgery all of the time!  My Doctors have been watching lung nodules now for 7 months. They have remained stable.

Just this past week I felt a lump. It didn't show on yesterdays scans. My onc arranged for an FNA yesterday. Don't know the results yet but he told me that even if it comes back clear he feels because of the location that it needs to be removed – very close to surgery site from 4 weeks ago.  If the results from the FNA are positive I'm going systemic. This is after 5 years of watch and wait and many recurrances. I've put this off as long as I felt was safe.

If this is removed for you, and nothing else shows up, and if you are then stage IV you will be NED. That means there are little options. One thing is to ask for your hla factor to be tested – that's a blood test. There is at least 1 trial out there for people who are stage IV with HLA 0201 positive.   There is also another trial that my Doctor discussed with me yesterday. It's ippi at a different dose vs interfuron. Who knows what arm you would get.  I find it interesting that interfuron has never been recommended for stage IV but now they are using it in a trial…..

You might want to consider leaving this in if you want to do something systemic.  I know for me it took a long time to make this decision. We are each different.

Changes I made: At first I continued working and did a year in a trial of GMCSF. Was later disclosed and I did get the drug, results of the trial showed that it did not make significant difference in survival. When it came back to the bladder I decided to get rid of some stress in my life and never went back to work the day after diagnosis. That was a difficult decision and is right for some and not for others. I had been a teacher for 34 years at that point so that does make a difference.  I stay busy!  I have gone through periods of times where I have  changed my diet but ultimately I slip back to my old ways.  I do live for the moment and try to laugh as much as possible. During this journey we have moved to be closer to a grandchild and she has helped with the laughter.  What is interesting is since the move I've had many issues flare up. My onc who has now known me for several years has told us NO MORE MOVES! He comes out and says that this stress didn't help.  (we are renovating our home)

Find a support group. It helps if it is melanoma but it's not mandatory. If you go that way make sure it's a variety of cancers so the subject doesn't get bogged down onto one type of cancer.

Journaling has also helped me. That might be why so many cancer patients end up with a blog. Putting your fears down on paper does help.

Come into chat. If someone sees your name they will come in and join you.

Linda

5 year anniversary stage IV today.

We are not long term survivors (yet), but I felt the need to respond to your post. My husband and I only found out he was Stage IV the end of April, so it was not so very long ago that we were where you are. 

We also switched doctors and hospitals after having my husband's care mismanaged (my husband's Melanoma spread extremely quickly and his doctor was not proactive with his case at all). 

Trust me when I say we have definitely had that terrified feeling you are experiencing. 

So this is what I would say: DON'T go reading/believing all the statistics crap. Everyone's case is different and with all the new treatments coming out, the prognosis is better than ever before. DON'T let fear rule your decisions. DO your research. Learn as much as you can about the disease and treatments thereof. DO be your own advocate. DO ask every question that comes to mind…and DON'T let "I don't know" be the answer. Don't leave the office until you have gotten all the questions answered to your satisfaction. I would also highly recommend having someone else to go with you to appointments. Sometimes it's very difficult to remember everything you talked about and/or all the details of the treatment options. Either that, or take a recorder with you so you can review it later. 

Early on Charlie (at least I think it was Charlie…) gave us some great advice: Doctors are there to manage your health, but it's your life. YOU are in the driver's seat. Drive the car yourself… or you WILL be driven. (and not always to a destination you want)

Wishing you the very best of luck. 

Michelle, wife of Don, Stage IV

We are not long term survivors (yet), but I felt the need to respond to your post. My husband and I only found out he was Stage IV the end of April, so it was not so very long ago that we were where you are. 

We also switched doctors and hospitals after having my husband's care mismanaged (my husband's Melanoma spread extremely quickly and his doctor was not proactive with his case at all). 

Trust me when I say we have definitely had that terrified feeling you are experiencing. 

So this is what I would say: DON'T go reading/believing all the statistics crap. Everyone's case is different and with all the new treatments coming out, the prognosis is better than ever before. DON'T let fear rule your decisions. DO your research. Learn as much as you can about the disease and treatments thereof. DO be your own advocate. DO ask every question that comes to mind…and DON'T let "I don't know" be the answer. Don't leave the office until you have gotten all the questions answered to your satisfaction. I would also highly recommend having someone else to go with you to appointments. Sometimes it's very difficult to remember everything you talked about and/or all the details of the treatment options. Either that, or take a recorder with you so you can review it later. 

Early on Charlie (at least I think it was Charlie…) gave us some great advice: Doctors are there to manage your health, but it's your life. YOU are in the driver's seat. Drive the car yourself… or you WILL be driven. (and not always to a destination you want)

Wishing you the very best of luck. 

Michelle, wife of Don, Stage IV

Sorry to hear that you are going thru this.  and that you had to wait so long to find out something like this.  I am being seen by doctors at Sloan and what I love about my oncologist is that he doesn't want to wait to get answers on things.  In Jan when my CT scan showed a dozen small nodules in my lungs his reaction was – I want you to see a thoracic surgeon immediately and get a biopsy.  Other oncologists would have had me wait 3 months and rescan to see if anything changed.

While the VAT's procedure wasn't fun… it did confirm melanoma in my lungs.  In April I was scanned again and the nodules were gone!  My doctors comment was – glad we did the biopsy otherwise I'd just think you had an infection.  This way we can monitor you more closely.

I think all of your reactions are normal – we've all gone thru them.  I'd be mad too!  We know how tricky and sometimes agressive this can be and this reminds us how forward and proactive we must be in our own care. 

I am with you on the fear part and how you tell those around you.  The week I found out I had melanoma I had resigned from my employer to take a new job in New Jersey.  I struggled with how do I tell them?  I had to tell them – I needed time off for surgery!  I have been with my new company 8 months now and very few people in the office know what I'm going thru – I struggle sometimes with if they should know since it has very much effected my job performance. 

Hang in there.  This is a great group of folks to help offer support and guidance (or at least even an 'ear' to listen). 

I am still pretty new to the stage 4 club – but I will say that my attitude towards things has changed.  I believe in remaining positive and upbeat.  It's hard to figure out who to tell about our challenges – but I also believe a strong support network is a must!  We will all take all the positive thoughts and prayers we can get! 

I would also think about if you are highly active in your community – how do you turn this in to a way to create awareness?

Sorry to hear that you are going thru this.  and that you had to wait so long to find out something like this.  I am being seen by doctors at Sloan and what I love about my oncologist is that he doesn't want to wait to get answers on things.  In Jan when my CT scan showed a dozen small nodules in my lungs his reaction was – I want you to see a thoracic surgeon immediately and get a biopsy.  Other oncologists would have had me wait 3 months and rescan to see if anything changed.

While the VAT's procedure wasn't fun… it did confirm melanoma in my lungs.  In April I was scanned again and the nodules were gone!  My doctors comment was – glad we did the biopsy otherwise I'd just think you had an infection.  This way we can monitor you more closely.

I think all of your reactions are normal – we've all gone thru them.  I'd be mad too!  We know how tricky and sometimes agressive this can be and this reminds us how forward and proactive we must be in our own care. 

I am with you on the fear part and how you tell those around you.  The week I found out I had melanoma I had resigned from my employer to take a new job in New Jersey.  I struggled with how do I tell them?  I had to tell them – I needed time off for surgery!  I have been with my new company 8 months now and very few people in the office know what I'm going thru – I struggle sometimes with if they should know since it has very much effected my job performance. 

Hang in there.  This is a great group of folks to help offer support and guidance (or at least even an 'ear' to listen). 

I am still pretty new to the stage 4 club – but I will say that my attitude towards things has changed.  I believe in remaining positive and upbeat.  It's hard to figure out who to tell about our challenges – but I also believe a strong support network is a must!  We will all take all the positive thoughts and prayers we can get! 

I would also think about if you are highly active in your community – how do you turn this in to a way to create awareness?