My story, new to this board, looking for guidance, positivity, and prayers

I was in your position 2.5 years ago – facing lymph node dissection of pelvis & rt groin. I’ve had more ups than downs, and I am still here battling. Once you have a PET you can be properly staged 3 or 4. Interferon is usually only offered for stage 3 and has a low success rate vs the side effects. There are clinical trials for stage 3 also. This site has lots of information available on treatment options and the community is very supportive. Survival statistics are outdated based on the two new melanoma drugs approved last year and some of the exciting results being seen in clinical trials recently. Educate yourself, find a good melanoma oncologist, and face the fact that melanoma or not, there are no guarantees for any of us. Appreciate today.

I was in your position 2.5 years ago – facing lymph node dissection of pelvis & rt groin. I’ve had more ups than downs, and I am still here battling. Once you have a PET you can be properly staged 3 or 4. Interferon is usually only offered for stage 3 and has a low success rate vs the side effects. There are clinical trials for stage 3 also. This site has lots of information available on treatment options and the community is very supportive. Survival statistics are outdated based on the two new melanoma drugs approved last year and some of the exciting results being seen in clinical trials recently. Educate yourself, find a good melanoma oncologist, and face the fact that melanoma or not, there are no guarantees for any of us. Appreciate today.

I was in your position 2.5 years ago – facing lymph node dissection of pelvis & rt groin. I’ve had more ups than downs, and I am still here battling. Once you have a PET you can be properly staged 3 or 4. Interferon is usually only offered for stage 3 and has a low success rate vs the side effects. There are clinical trials for stage 3 also. This site has lots of information available on treatment options and the community is very supportive. Survival statistics are outdated based on the two new melanoma drugs approved last year and some of the exciting results being seen in clinical trials recently. Educate yourself, find a good melanoma oncologist, and face the fact that melanoma or not, there are no guarantees for any of us. Appreciate today.

Hi Roger!  Glad you postedhere – I forgot to tell you about the recommended places in MO – this info is from the Melanoma International Foundation site which is also a great source of info along with the MRF.  You might be able to get a referral to these places – call your insurance or your doc.  http://www.melanomainternational.org/resources/cancercenters.html

Hi Roger!  Glad you postedhere – I forgot to tell you about the recommended places in MO – this info is from the Melanoma International Foundation site which is also a great source of info along with the MRF.  You might be able to get a referral to these places – call your insurance or your doc.  http://www.melanomainternational.org/resources/cancercenters.html

Hi Roger!  Glad you postedhere – I forgot to tell you about the recommended places in MO – this info is from the Melanoma International Foundation site which is also a great source of info along with the MRF.  You might be able to get a referral to these places – call your insurance or your doc.  http://www.melanomainternational.org/resources/cancercenters.html

Hi…I go to Dr. Gerald Linette at Siteman Cancer in St. Louis.  He is a melanoma specialist and a good Dr.  I wish you the very best of luck and blessings.

Hi…I go to Dr. Gerald Linette at Siteman Cancer in St. Louis.  He is a melanoma specialist and a good Dr.  I wish you the very best of luck and blessings.

Hi…I go to Dr. Gerald Linette at Siteman Cancer in St. Louis.  He is a melanoma specialist and a good Dr.  I wish you the very best of luck and blessings.

Hi Roger,

Attitude and your diet are very important as well as getting some sunshine on your skin.

Avoid stress the best that you can. Drink lots of Spring water and get adequate amount of sleep.

The following info is what I gave to my oncologist when he wanted me to take interferon, (this is from another forum group) I refused to take it and still I am happy about my decision even though I progressed to stage IV. Remember It is your choice and your body!

 

Re: Interferon Posted: 4:40:56 pm on 1/4/2008 Modified: 4:45:13 pm on 1/4/2008   Interferon can be a tough treatment to take. The research on it has been controversial, with opponents saying it only extends time of recurrence but not overall survival. Many centers of excellence don't prescribe it for melanoma treatment and that includes, Sloane Kettering, Mayo Clinic, Penn, and Johns Hopkins. It was once thought that the initial high dose might be the part that does something but that hasn't panned out.   I hope you have discussed this with your doctor and you may need another opinion about it as well.  Re: Stage IIIA-To Interferon or Not To Interferon?   As a patient advocate I just want you to consider what you are choosing very carefully.  I totally understand your reasons for choosing a toxic therapy such as interferon, as there really are no alternatives. (leukine or watch and wait) It is a scary prospect to think about melanoma recurring.  But let me reiterate what the experts have told me:  interferon does not prevent recurrence, or extend lifetime survival,  it MAY extend recurrence time by one year.  You may lose one year of productivity and quality of life.  Do not choose interferon if you have a family history or personal history of depression or mental illness of any kind. It is known to exacerbate these conditions and it can be long term debilitation.

Here is where I would start. Obtain, read and understand the book "The Maker's Diet". Have your blood tested for vitamind-3 and spend the time learning about your cancer. I believe that my melanoma was caused by the lack of sun, my diet and poor sleeping habits. Best Wishes,  Gene

Here is an excellent video about cancer in general, it is a must see video!

http://www.youtube.com/watch?v=WnaBG177VIw&feature=related

Hi Roger,

Attitude and your diet are very important as well as getting some sunshine on your skin.

Avoid stress the best that you can. Drink lots of Spring water and get adequate amount of sleep.

The following info is what I gave to my oncologist when he wanted me to take interferon, (this is from another forum group) I refused to take it and still I am happy about my decision even though I progressed to stage IV. Remember It is your choice and your body!

 

Re: Interferon Posted: 4:40:56 pm on 1/4/2008 Modified: 4:45:13 pm on 1/4/2008   Interferon can be a tough treatment to take. The research on it has been controversial, with opponents saying it only extends time of recurrence but not overall survival. Many centers of excellence don't prescribe it for melanoma treatment and that includes, Sloane Kettering, Mayo Clinic, Penn, and Johns Hopkins. It was once thought that the initial high dose might be the part that does something but that hasn't panned out.   I hope you have discussed this with your doctor and you may need another opinion about it as well.  Re: Stage IIIA-To Interferon or Not To Interferon?   As a patient advocate I just want you to consider what you are choosing very carefully.  I totally understand your reasons for choosing a toxic therapy such as interferon, as there really are no alternatives. (leukine or watch and wait) It is a scary prospect to think about melanoma recurring.  But let me reiterate what the experts have told me:  interferon does not prevent recurrence, or extend lifetime survival,  it MAY extend recurrence time by one year.  You may lose one year of productivity and quality of life.  Do not choose interferon if you have a family history or personal history of depression or mental illness of any kind. It is known to exacerbate these conditions and it can be long term debilitation.

Here is where I would start. Obtain, read and understand the book "The Maker's Diet". Have your blood tested for vitamind-3 and spend the time learning about your cancer. I believe that my melanoma was caused by the lack of sun, my diet and poor sleeping habits. Best Wishes,  Gene

Here is an excellent video about cancer in general, it is a must see video!

http://www.youtube.com/watch?v=WnaBG177VIw&feature=related

Hi Roger,

Attitude and your diet are very important as well as getting some sunshine on your skin.

Avoid stress the best that you can. Drink lots of Spring water and get adequate amount of sleep.

The following info is what I gave to my oncologist when he wanted me to take interferon, (this is from another forum group) I refused to take it and still I am happy about my decision even though I progressed to stage IV. Remember It is your choice and your body!

 

Re: Interferon Posted: 4:40:56 pm on 1/4/2008 Modified: 4:45:13 pm on 1/4/2008   Interferon can be a tough treatment to take. The research on it has been controversial, with opponents saying it only extends time of recurrence but not overall survival. Many centers of excellence don't prescribe it for melanoma treatment and that includes, Sloane Kettering, Mayo Clinic, Penn, and Johns Hopkins. It was once thought that the initial high dose might be the part that does something but that hasn't panned out.   I hope you have discussed this with your doctor and you may need another opinion about it as well.  Re: Stage IIIA-To Interferon or Not To Interferon?   As a patient advocate I just want you to consider what you are choosing very carefully.  I totally understand your reasons for choosing a toxic therapy such as interferon, as there really are no alternatives. (leukine or watch and wait) It is a scary prospect to think about melanoma recurring.  But let me reiterate what the experts have told me:  interferon does not prevent recurrence, or extend lifetime survival,  it MAY extend recurrence time by one year.  You may lose one year of productivity and quality of life.  Do not choose interferon if you have a family history or personal history of depression or mental illness of any kind. It is known to exacerbate these conditions and it can be long term debilitation.

Here is where I would start. Obtain, read and understand the book "The Maker's Diet". Have your blood tested for vitamind-3 and spend the time learning about your cancer. I believe that my melanoma was caused by the lack of sun, my diet and poor sleeping habits. Best Wishes,  Gene

Here is an excellent video about cancer in general, it is a must see video!

http://www.youtube.com/watch?v=WnaBG177VIw&feature=related

I can't offer any help or advice because my husband, Scott was just diagnosed a week ago too, stage IV.   We are in the search for Doctors and what to do too.  We are in Indianapolis. 

The only thing that I can offer is prayers.  I will be thinking/praying for you and your wife, baby when I pray for us. 

We are pretty messed up by all this and it really takes a toll on your mind/body.  I do know what you are going through.  We are there too. 

This site has been the best.  I think it will help you. You will learn so much and be encouraged.  There are lots of people on here that are doing way better than the odds. 

Take care, Lisa

I can't offer any help or advice because my husband, Scott was just diagnosed a week ago too, stage IV.   We are in the search for Doctors and what to do too.  We are in Indianapolis. 

The only thing that I can offer is prayers.  I will be thinking/praying for you and your wife, baby when I pray for us. 

We are pretty messed up by all this and it really takes a toll on your mind/body.  I do know what you are going through.  We are there too. 

This site has been the best.  I think it will help you. You will learn so much and be encouraged.  There are lots of people on here that are doing way better than the odds. 

Take care, Lisa

I can't offer any help or advice because my husband, Scott was just diagnosed a week ago too, stage IV.   We are in the search for Doctors and what to do too.  We are in Indianapolis. 

The only thing that I can offer is prayers.  I will be thinking/praying for you and your wife, baby when I pray for us. 

We are pretty messed up by all this and it really takes a toll on your mind/body.  I do know what you are going through.  We are there too. 

This site has been the best.  I think it will help you. You will learn so much and be encouraged.  There are lots of people on here that are doing way better than the odds. 

Take care, Lisa