MRFUser2011

It sounds like you have a lot of unanswered questions.  I can share with you the things I have learned during my journey with melanoma.  I don't say mistakes I made because I was doing the best I could at the time with what I knew, as we all are.  So if you find in the weeks ahead that there are things you wish you had done differently, don't be hard on yourself.  Learn and move on.  You want to minimize stress as much as possible and being kind to yourself is really important! If waiting until next month for more information is really going to be difficult for you, I would encourage you to call your oncologist's office and see if they can get you in earlier.  Even a week could make a big difference if you are feeling a lot of concern.

I did not start by working with a melanoma specialist.  My dermatologist Dx my melanoma and sent me to a surgical oncologist that specializes in melanoma to perform my WME and node disection at a comprehensive cancer center 4 hours away, but then I returned home to the care of a general oncologist.  Fortunately, it worked out fine and when something became alarming she said "surgery" and I returned to my surgeon.  I have now seen a melanoma specialist twice and will continue to consult with him in the future.  I do my 3 month checks with my local dermatologist and scans with my general oncologist but feel having the added expertise will be important to my long term care.

I would also suggest writing out your questions with space for each answer.  I know this sounds so simple but my first visit to the surgeon I had a list and no space for answers.  Time was limited and I jotted all my answers on separate pages and then when I went back to read them, a lot of it meant nothing to me.  I have found that going into an appointment prepared helps me get the best information.  This is routine for the doctors and I continue to learn about things I was not aware of, had no idea to ask the doctor and it didn't occur to the doctor to tell me.  So I just keep learning!  

Ask for copies of EVERYTHING at your appointments.  It is much easier to collect it as you go than try to get it all later (another lesson I have learned).  I now have a binder with copies of all my reports, pathology findings, blood tests, etc.  I even have a set of disks of PET/CT scans and MRIs.  It just makes it so much easier when you need these things to have them at hand.  

Don't overwhelm yourself by reading about every possible outcome or problem or treatment.  There is so much information out there, and some of it is pretty frightening, you can easily overwhelm yourself.  Start with the questions that occur to you and ask your own physicians.  This site is a great place for support and answers about what to expect with certain procedures or for information on certain treatments.  But your case is individual and remember that.  One of the best things a doctor told me is that statistics are for economizing medicine, not for predicting individual outcomes.  

Blessings, Shari

It sounds like you have a lot of unanswered questions.  I can share with you the things I have learned during my journey with melanoma.  I don't say mistakes I made because I was doing the best I could at the time with what I knew, as we all are.  So if you find in the weeks ahead that there are things you wish you had done differently, don't be hard on yourself.  Learn and move on.  You want to minimize stress as much as possible and being kind to yourself is really important! If waiting until next month for more information is really going to be difficult for you, I would encourage you to call your oncologist's office and see if they can get you in earlier.  Even a week could make a big difference if you are feeling a lot of concern.

I did not start by working with a melanoma specialist.  My dermatologist Dx my melanoma and sent me to a surgical oncologist that specializes in melanoma to perform my WME and node disection at a comprehensive cancer center 4 hours away, but then I returned home to the care of a general oncologist.  Fortunately, it worked out fine and when something became alarming she said "surgery" and I returned to my surgeon.  I have now seen a melanoma specialist twice and will continue to consult with him in the future.  I do my 3 month checks with my local dermatologist and scans with my general oncologist but feel having the added expertise will be important to my long term care.

I would also suggest writing out your questions with space for each answer.  I know this sounds so simple but my first visit to the surgeon I had a list and no space for answers.  Time was limited and I jotted all my answers on separate pages and then when I went back to read them, a lot of it meant nothing to me.  I have found that going into an appointment prepared helps me get the best information.  This is routine for the doctors and I continue to learn about things I was not aware of, had no idea to ask the doctor and it didn't occur to the doctor to tell me.  So I just keep learning!  

Ask for copies of EVERYTHING at your appointments.  It is much easier to collect it as you go than try to get it all later (another lesson I have learned).  I now have a binder with copies of all my reports, pathology findings, blood tests, etc.  I even have a set of disks of PET/CT scans and MRIs.  It just makes it so much easier when you need these things to have them at hand.  

Don't overwhelm yourself by reading about every possible outcome or problem or treatment.  There is so much information out there, and some of it is pretty frightening, you can easily overwhelm yourself.  Start with the questions that occur to you and ask your own physicians.  This site is a great place for support and answers about what to expect with certain procedures or for information on certain treatments.  But your case is individual and remember that.  One of the best things a doctor told me is that statistics are for economizing medicine, not for predicting individual outcomes.  

Blessings, Shari

Charlie, I am curious how it is that you continue to get treatment (obviously owing a lot from previous treatment still)? I am fairly new to the melanoma treatment experience so have only had experience with two surgeries.  I am just wondering what happens if you already owe for previous bills and need more treatment how it is handled?

Blessings, Shari

Charlie, I am curious how it is that you continue to get treatment (obviously owing a lot from previous treatment still)? I am fairly new to the melanoma treatment experience so have only had experience with two surgeries.  I am just wondering what happens if you already owe for previous bills and need more treatment how it is handled?

Blessings, Shari

I am glad to know I didn't upset you, Ayn.  I hope that you get answers and some peace of mind when you see your doctor.

Blessings, Shari

I am glad to know I didn't upset you, Ayn.  I hope that you get answers and some peace of mind when you see your doctor.

Blessings, Shari

Hi Kellie,

Thanks for sharing your experience with Leukine.  Can you tell me what kind of side effects (if any) you had?  Are the injections painful?  How easy is it to learn to do it for yourself?  I may be starting it soon and am looking for more details.  Thanks.

I hope the BRAF is successful for you.  

Blessings, Shari

Hi Kellie,

Thanks for sharing your experience with Leukine.  Can you tell me what kind of side effects (if any) you had?  Are the injections painful?  How easy is it to learn to do it for yourself?  I may be starting it soon and am looking for more details.  Thanks.

I hope the BRAF is successful for you.  

Blessings, Shari

Hi Mary,  

I am not sure what I am going to do.  Ipi has not been mentioned to me by any of my doctors but I keep reading about it here and it sounds like a pretty good treatment but I wasn't sure how hard it is to take.  I have been told by my surgical oncologist that he advises I take Leukine injections, self-administered, 2 weeks on/2 weeks off for a year.  Not something I am looking forward to and of fairly low success in preventing future occurences from what all my docs have said.  Even the surgeon said it is about a 5% boost to non-reccurence.  But at this point, I will take the 5% and do the treatment if no other options are available to me.

I don't even know if Ipi is an option for me right now and will have to ask my doctors.  I am well, no symptoms, my nodules were found on scans.  My only melanoma complications are post-op stuff and all very manageable.  I am still dealing with pleural effusion and my surgeon says no point in getting another PET/CT to follow the left nodule until I am completely recovered from first VATS and ready to face another surgery.  I agree and am currently working on healing fully.

Thanks for sharing your info.  I appreciate it and send you many NED wishes! 

Blessings, Shari

Hi Mary,  

I am not sure what I am going to do.  Ipi has not been mentioned to me by any of my doctors but I keep reading about it here and it sounds like a pretty good treatment but I wasn't sure how hard it is to take.  I have been told by my surgical oncologist that he advises I take Leukine injections, self-administered, 2 weeks on/2 weeks off for a year.  Not something I am looking forward to and of fairly low success in preventing future occurences from what all my docs have said.  Even the surgeon said it is about a 5% boost to non-reccurence.  But at this point, I will take the 5% and do the treatment if no other options are available to me.

I don't even know if Ipi is an option for me right now and will have to ask my doctors.  I am well, no symptoms, my nodules were found on scans.  My only melanoma complications are post-op stuff and all very manageable.  I am still dealing with pleural effusion and my surgeon says no point in getting another PET/CT to follow the left nodule until I am completely recovered from first VATS and ready to face another surgery.  I agree and am currently working on healing fully.

Thanks for sharing your info.  I appreciate it and send you many NED wishes! 

Blessings, Shari

I was offered Leukine post-op in 5/08 and I declined.  I had regional lymph nodes involved and removed.  When I saw my surgeon last month to have the lung nodule removed, he said he probably would have made the same decision that I did.  My local oncologist had told me that Leukine had a less than 5% effective rate and did nothing to prolong survival.  Well, that was back when I listened to statistics!

My surgeon said it actually is shown to have a more marked benefit for stage IV melanoma patients than Stage III.   I am now strongly considering beginning Leukine injections after my next PET/CT (if it shows the left nodule has shrunk or disappeared which I am told can happen post-op for removal of another met because the immune system ramps up) or after surgery to remove the nodule if it is still there.  According to the medical oncologist and my surgical oncologist, it gives me a statistical 5% increased chance of survival  (maybe more, each of us is an individual) and that feels a LOT more important now than when I believed I was done with melanoma for life.

Blessings, Shari