Stage IV resected – Need help deciding what to do

Personally, I would go for the trial and if you get interfuron you could always drop out!  I've been in that situation since 06 when I went to stage IV. 

Enjoy every moment.  Another thought is radiation in the area but of course that doesn't help the loose rouge cells.   I have had several recurrances: breast, bladder (twice) here and there lymph nodes and then in Oct a brain met. 

Linda

Personally, I would go for the trial and if you get interfuron you could always drop out!  I've been in that situation since 06 when I went to stage IV. 

Enjoy every moment.  Another thought is radiation in the area but of course that doesn't help the loose rouge cells.   I have had several recurrances: breast, bladder (twice) here and there lymph nodes and then in Oct a brain met. 

Linda

Personally, I would go for the trial and if you get interfuron you could always drop out!  I've been in that situation since 06 when I went to stage IV. 

Enjoy every moment.  Another thought is radiation in the area but of course that doesn't help the loose rouge cells.   I have had several recurrances: breast, bladder (twice) here and there lymph nodes and then in Oct a brain met. 

Linda

Personally, I would go for the trial and if you get interfuron you could always drop out!  I've been in that situation since 06 when I went to stage IV. 

Enjoy every moment.  Another thought is radiation in the area but of course that doesn't help the loose rouge cells.   I have had several recurrances: breast, bladder (twice) here and there lymph nodes and then in Oct a brain met. 

Linda

Personally, I would go for the trial and if you get interfuron you could always drop out!  I've been in that situation since 06 when I went to stage IV. 

Enjoy every moment.  Another thought is radiation in the area but of course that doesn't help the loose rouge cells.   I have had several recurrances: breast, bladder (twice) here and there lymph nodes and then in Oct a brain met. 

Linda

Personally, I would go for the trial and if you get interfuron you could always drop out!  I've been in that situation since 06 when I went to stage IV. 

Enjoy every moment.  Another thought is radiation in the area but of course that doesn't help the loose rouge cells.   I have had several recurrances: breast, bladder (twice) here and there lymph nodes and then in Oct a brain met. 

Linda

I know how you feel and just wanted to reach out to you and pass on what I’ve been told. I had a mole on my chest positive for melanoma and had it removed did nothing else and just did wait and see and get checked often.stayed cancer free for 5 years exactly, then I found a lump in my breast and it came back positive for melanoma. Had it removed and was told by one of the best hospitals for melanoma that there isn’t any data showing treatment would be helpful and to continue watching scans MRI blood work every three months then 6 months but after first 6 month check the cancer has spread to my lungs! So I’m now qualified for a pd1 antibody trial going on many places around the country. That was told to me yesterday! I’m signing up for the trial which is called CT-2012-01! I know how unsettling it can be when they say just watch closely. But I have to trust my doctor and believe in what she’s telling me! I’m grateful that this trial is available to me otherwise I’d have nothing! I would recommend H Lee Moffitt center in Tampa Fl if possible for you! Many have told me they are number one in country for melanoma treatment! Keep positive and educate yourself as much as possible! Trust your guy! I believe this is going to work for me and there’s just no other option for me! The mind is a powerful thing and I’m not giving up! I’m scared to death! But have lots of love and support and prayer! I wish you the best! Feel free to contact me anytime!! Take care!!

I know how you feel and just wanted to reach out to you and pass on what I’ve been told. I had a mole on my chest positive for melanoma and had it removed did nothing else and just did wait and see and get checked often.stayed cancer free for 5 years exactly, then I found a lump in my breast and it came back positive for melanoma. Had it removed and was told by one of the best hospitals for melanoma that there isn’t any data showing treatment would be helpful and to continue watching scans MRI blood work every three months then 6 months but after first 6 month check the cancer has spread to my lungs! So I’m now qualified for a pd1 antibody trial going on many places around the country. That was told to me yesterday! I’m signing up for the trial which is called CT-2012-01! I know how unsettling it can be when they say just watch closely. But I have to trust my doctor and believe in what she’s telling me! I’m grateful that this trial is available to me otherwise I’d have nothing! I would recommend H Lee Moffitt center in Tampa Fl if possible for you! Many have told me they are number one in country for melanoma treatment! Keep positive and educate yourself as much as possible! Trust your guy! I believe this is going to work for me and there’s just no other option for me! The mind is a powerful thing and I’m not giving up! I’m scared to death! But have lots of love and support and prayer! I wish you the best! Feel free to contact me anytime!! Take care!!

I know how you feel and just wanted to reach out to you and pass on what I’ve been told. I had a mole on my chest positive for melanoma and had it removed did nothing else and just did wait and see and get checked often.stayed cancer free for 5 years exactly, then I found a lump in my breast and it came back positive for melanoma. Had it removed and was told by one of the best hospitals for melanoma that there isn’t any data showing treatment would be helpful and to continue watching scans MRI blood work every three months then 6 months but after first 6 month check the cancer has spread to my lungs! So I’m now qualified for a pd1 antibody trial going on many places around the country. That was told to me yesterday! I’m signing up for the trial which is called CT-2012-01! I know how unsettling it can be when they say just watch closely. But I have to trust my doctor and believe in what she’s telling me! I’m grateful that this trial is available to me otherwise I’d have nothing! I would recommend H Lee Moffitt center in Tampa Fl if possible for you! Many have told me they are number one in country for melanoma treatment! Keep positive and educate yourself as much as possible! Trust your guy! I believe this is going to work for me and there’s just no other option for me! The mind is a powerful thing and I’m not giving up! I’m scared to death! But have lots of love and support and prayer! I wish you the best! Feel free to contact me anytime!! Take care!!

Hi,

A very hard call – nobody wants to sit and do nothing when such a challenge may pop up at any time.  One approach might be, to sit tight and watch this thing very closely.  In the meantime, work with your doctors to gather some important information that will help you decide what options will be available and best for you should it come back.  Checking for BRAF and getting your HLA typing done come to my mind.  Personally, I would look at other trial options before jumping into the one you listed. 

Things seem to be happening pretty fast (for the melanoma world) and there are so many trials that are trying new things, comparing new and old things, combining things, etc.  In my mind the longer one can safely postpone treatment – the more good data about options you will have.  Unfortunately, our treatment options are not very clear at this time.

I wish the very best and remember to lean on those close to you – they want to help.

Best, Troy

Hi,

A very hard call – nobody wants to sit and do nothing when such a challenge may pop up at any time.  One approach might be, to sit tight and watch this thing very closely.  In the meantime, work with your doctors to gather some important information that will help you decide what options will be available and best for you should it come back.  Checking for BRAF and getting your HLA typing done come to my mind.  Personally, I would look at other trial options before jumping into the one you listed. 

Things seem to be happening pretty fast (for the melanoma world) and there are so many trials that are trying new things, comparing new and old things, combining things, etc.  In my mind the longer one can safely postpone treatment – the more good data about options you will have.  Unfortunately, our treatment options are not very clear at this time.

I wish the very best and remember to lean on those close to you – they want to help.

Best, Troy

Hi,

A very hard call – nobody wants to sit and do nothing when such a challenge may pop up at any time.  One approach might be, to sit tight and watch this thing very closely.  In the meantime, work with your doctors to gather some important information that will help you decide what options will be available and best for you should it come back.  Checking for BRAF and getting your HLA typing done come to my mind.  Personally, I would look at other trial options before jumping into the one you listed. 

Things seem to be happening pretty fast (for the melanoma world) and there are so many trials that are trying new things, comparing new and old things, combining things, etc.  In my mind the longer one can safely postpone treatment – the more good data about options you will have.  Unfortunately, our treatment options are not very clear at this time.

I wish the very best and remember to lean on those close to you – they want to help.

Best, Troy

Linda, just saw your posting and curious as to what you decided? I am in a very similar situation and unsure what to do. Stage 4 resected but have had this twice now and again doc is recommending observation. Unfortunately I had interferon before (recurred in 6 months while on it…in lymph nodes) so I don’t qualify for clin trial. But ipilimumab is approved and I have another doctor recommending to take it. Having trouble weighing all pros and cons. So just wondering how this played out for you?
Thx, Shane

Linda, just saw your posting and curious as to what you decided? I am in a very similar situation and unsure what to do. Stage 4 resected but have had this twice now and again doc is recommending observation. Unfortunately I had interferon before (recurred in 6 months while on it…in lymph nodes) so I don’t qualify for clin trial. But ipilimumab is approved and I have another doctor recommending to take it. Having trouble weighing all pros and cons. So just wondering how this played out for you?
Thx, Shane

Linda, just saw your posting and curious as to what you decided? I am in a very similar situation and unsure what to do. Stage 4 resected but have had this twice now and again doc is recommending observation. Unfortunately I had interferon before (recurred in 6 months while on it…in lymph nodes) so I don’t qualify for clin trial. But ipilimumab is approved and I have another doctor recommending to take it. Having trouble weighing all pros and cons. So just wondering how this played out for you?
Thx, Shane

Sorry that last reply was for cldeters…

Sorry that last reply was for cldeters…

Sorry that last reply was for cldeters…