Husband newly diagnosed Stage IIIb, scared to death

I won't be too much help as I'm here strictly to learn (my husband is Stage I with multiple primaries), but there are lots of folks who will be able to provide you with much information.  Unfortunately, you might not get much response over the weekend.  Just be patient.

I do know one thing that you will be told over and over.  If your husband is not under the care of a melanoma specialist, you need to find one right away.  (The fact that the specimen was not read by a dermapathologist already makes me think that you are not seeing a specialist.)  Treatments for melanoma have changed dramatically just in the past few years, and specialists will have access to new treatments and clinical trials.  

Please try not to panic.  I know how scary it is to hear the word "melanoma", and even moreso to be immediately at Stage III.  However, this is not a death sentence.  There are many, many people here who were Stage III and even Stage IV and are now considered NED (no evidence of disease) years later.  More and more people are beating this disease, so stay calm and be strong for your husband and kiddos.  

I won't be too much help as I'm here strictly to learn (my husband is Stage I with multiple primaries), but there are lots of folks who will be able to provide you with much information.  Unfortunately, you might not get much response over the weekend.  Just be patient.

I do know one thing that you will be told over and over.  If your husband is not under the care of a melanoma specialist, you need to find one right away.  (The fact that the specimen was not read by a dermapathologist already makes me think that you are not seeing a specialist.)  Treatments for melanoma have changed dramatically just in the past few years, and specialists will have access to new treatments and clinical trials.  

Please try not to panic.  I know how scary it is to hear the word "melanoma", and even moreso to be immediately at Stage III.  However, this is not a death sentence.  There are many, many people here who were Stage III and even Stage IV and are now considered NED (no evidence of disease) years later.  More and more people are beating this disease, so stay calm and be strong for your husband and kiddos.  

I won't be too much help as I'm here strictly to learn (my husband is Stage I with multiple primaries), but there are lots of folks who will be able to provide you with much information.  Unfortunately, you might not get much response over the weekend.  Just be patient.

I do know one thing that you will be told over and over.  If your husband is not under the care of a melanoma specialist, you need to find one right away.  (The fact that the specimen was not read by a dermapathologist already makes me think that you are not seeing a specialist.)  Treatments for melanoma have changed dramatically just in the past few years, and specialists will have access to new treatments and clinical trials.  

Please try not to panic.  I know how scary it is to hear the word "melanoma", and even moreso to be immediately at Stage III.  However, this is not a death sentence.  There are many, many people here who were Stage III and even Stage IV and are now considered NED (no evidence of disease) years later.  More and more people are beating this disease, so stay calm and be strong for your husband and kiddos.  

What you describe is not something that I would call a stage IIIb, but that designation may work to your benefit. Just recently, a couple of clinical trials have started for stage III patients (most clinical trials are limited to stage IV patients). One of the most promising uses the MAGE-A3 vaccine. 

If you go to clinicaltrials.gov and search for NCT01425749 you can read about it. You can also use the "advanced search" function on the clinicaltrials.gov website and search for "mage, adjuvant, melanoma". There are a couple of trials going on for stage III post-surgery patients. 

Your husband's chances for recurrance are probably very low. However, if you are not comfortable with the "wait and see" approach, check into any clinical trials that may be appropriate. 

What you describe is not something that I would call a stage IIIb, but that designation may work to your benefit. Just recently, a couple of clinical trials have started for stage III patients (most clinical trials are limited to stage IV patients). One of the most promising uses the MAGE-A3 vaccine. 

If you go to clinicaltrials.gov and search for NCT01425749 you can read about it. You can also use the "advanced search" function on the clinicaltrials.gov website and search for "mage, adjuvant, melanoma". There are a couple of trials going on for stage III post-surgery patients. 

Your husband's chances for recurrance are probably very low. However, if you are not comfortable with the "wait and see" approach, check into any clinical trials that may be appropriate. 

What you describe is not something that I would call a stage IIIb, but that designation may work to your benefit. Just recently, a couple of clinical trials have started for stage III patients (most clinical trials are limited to stage IV patients). One of the most promising uses the MAGE-A3 vaccine. 

If you go to clinicaltrials.gov and search for NCT01425749 you can read about it. You can also use the "advanced search" function on the clinicaltrials.gov website and search for "mage, adjuvant, melanoma". There are a couple of trials going on for stage III post-surgery patients. 

Your husband's chances for recurrance are probably very low. However, if you are not comfortable with the "wait and see" approach, check into any clinical trials that may be appropriate. 

Read my profile.  
i started complaining to my PCP in Jan 2003.  I was misdiagnosed for over 3 1/2 years and within months of diagnosis (May 2006) was found to have much more melanoma invasion than your husband.  Was at stage IV in months. (The local surgeon did not followup nor even do lymph node checks.) In Feb 2007 I was told to not expect to be here six months in the future.  I got to a Melanoma Center of Excellence (Univ Of Va) and am still living life and having new grandkids and great-grandkids!.  There is much more hope now than there was for the first few years of my melanoma. 

HOPE? There is always room for hope.  I  have not been NED (No Evidence of Disease in scans) since 2006, but I am still here and functioning better than many Doctors can understand!  It is unusual for someone with no spread to the lymph nodes to be staged at Stage III, but as POW said this staging can get into trials that have recently opened down to the Stage III level.  I definitely consider this should be an option for at least Stage III, if not lower stage melanoma patients.  If your husband doesn't have intestional problems, do try for the Ipi treatment if they will include him without having measurable tumors.

    Many people here have become at least temporarily NED from the newer treatments (approved within the last 16 months).  Some have been NED for years folling their participation in trials.  Know one man that has been NED since being in an early IL-2 trial in 1991!  The Melanoma treatment world is moving much faster now than it did up until the late 2000's.

Read my profile.  
i started complaining to my PCP in Jan 2003.  I was misdiagnosed for over 3 1/2 years and within months of diagnosis (May 2006) was found to have much more melanoma invasion than your husband.  Was at stage IV in months. (The local surgeon did not followup nor even do lymph node checks.) In Feb 2007 I was told to not expect to be here six months in the future.  I got to a Melanoma Center of Excellence (Univ Of Va) and am still living life and having new grandkids and great-grandkids!.  There is much more hope now than there was for the first few years of my melanoma. 

HOPE? There is always room for hope.  I  have not been NED (No Evidence of Disease in scans) since 2006, but I am still here and functioning better than many Doctors can understand!  It is unusual for someone with no spread to the lymph nodes to be staged at Stage III, but as POW said this staging can get into trials that have recently opened down to the Stage III level.  I definitely consider this should be an option for at least Stage III, if not lower stage melanoma patients.  If your husband doesn't have intestional problems, do try for the Ipi treatment if they will include him without having measurable tumors.

    Many people here have become at least temporarily NED from the newer treatments (approved within the last 16 months).  Some have been NED for years folling their participation in trials.  Know one man that has been NED since being in an early IL-2 trial in 1991!  The Melanoma treatment world is moving much faster now than it did up until the late 2000's.

Read my profile.  
i started complaining to my PCP in Jan 2003.  I was misdiagnosed for over 3 1/2 years and within months of diagnosis (May 2006) was found to have much more melanoma invasion than your husband.  Was at stage IV in months. (The local surgeon did not followup nor even do lymph node checks.) In Feb 2007 I was told to not expect to be here six months in the future.  I got to a Melanoma Center of Excellence (Univ Of Va) and am still living life and having new grandkids and great-grandkids!.  There is much more hope now than there was for the first few years of my melanoma. 

HOPE? There is always room for hope.  I  have not been NED (No Evidence of Disease in scans) since 2006, but I am still here and functioning better than many Doctors can understand!  It is unusual for someone with no spread to the lymph nodes to be staged at Stage III, but as POW said this staging can get into trials that have recently opened down to the Stage III level.  I definitely consider this should be an option for at least Stage III, if not lower stage melanoma patients.  If your husband doesn't have intestional problems, do try for the Ipi treatment if they will include him without having measurable tumors.

    Many people here have become at least temporarily NED from the newer treatments (approved within the last 16 months).  Some have been NED for years folling their participation in trials.  Know one man that has been NED since being in an early IL-2 trial in 1991!  The Melanoma treatment world is moving much faster now than it did up until the late 2000's.

If you don't have them yet, get copies of all the scans, pathology reports, bloodwork reports, and the surgical notes.  Keep a copy.

Hi and Welcome to the group.

Sorry you had to join.

If you want read my husbands profile.  He started out stage III and had no lymph node involvement he then progressed to Stage IV after 4 surgeries and 2 1/2 years.  He had an unresectable tumor pushing up at the cervical spine and is on the Yervoy (Ipi trial) since March of 2011 and for the last 10 months has been NED (no evidence of disease).  

His melanoma never involved the lymph nodes but passed and spread through the blood.  

There is much hope that things will help your husband and he can live a long life and enjoy his children.  Good positive mental attitude is also a plus.  A good melanoma specialist as others have recommended is also a plus.

My husband also has his Vitamin D3 levels checked regularly and takes supplements to help keep it in the upper percentage and his oncologist believes it may be helping him.

Judy (loving wife of Gene Stage IV and now NED)

P.S.  We also know a man who was Stage III and he did the Ipi treatments after his was surgically removed and he is still doing well.

Hi and Welcome to the group.

Sorry you had to join.

If you want read my husbands profile.  He started out stage III and had no lymph node involvement he then progressed to Stage IV after 4 surgeries and 2 1/2 years.  He had an unresectable tumor pushing up at the cervical spine and is on the Yervoy (Ipi trial) since March of 2011 and for the last 10 months has been NED (no evidence of disease).  

His melanoma never involved the lymph nodes but passed and spread through the blood.  

There is much hope that things will help your husband and he can live a long life and enjoy his children.  Good positive mental attitude is also a plus.  A good melanoma specialist as others have recommended is also a plus.

My husband also has his Vitamin D3 levels checked regularly and takes supplements to help keep it in the upper percentage and his oncologist believes it may be helping him.

Judy (loving wife of Gene Stage IV and now NED)

P.S.  We also know a man who was Stage III and he did the Ipi treatments after his was surgically removed and he is still doing well.

Hi and Welcome to the group.

Sorry you had to join.

If you want read my husbands profile.  He started out stage III and had no lymph node involvement he then progressed to Stage IV after 4 surgeries and 2 1/2 years.  He had an unresectable tumor pushing up at the cervical spine and is on the Yervoy (Ipi trial) since March of 2011 and for the last 10 months has been NED (no evidence of disease).  

His melanoma never involved the lymph nodes but passed and spread through the blood.  

There is much hope that things will help your husband and he can live a long life and enjoy his children.  Good positive mental attitude is also a plus.  A good melanoma specialist as others have recommended is also a plus.

My husband also has his Vitamin D3 levels checked regularly and takes supplements to help keep it in the upper percentage and his oncologist believes it may be helping him.

Judy (loving wife of Gene Stage IV and now NED)

P.S.  We also know a man who was Stage III and he did the Ipi treatments after his was surgically removed and he is still doing well.

I agree with what others have said:

1) always get copies of all medical tests and reports AND get a CD of all scan images. Bring them to every doctor's appointment but do not allow the doctor to keep them. They can make copies, but you keep the originals. 

2) get your husband to a melanoma specialty clinic. Melanoma is too tricky and the treatments are advancing so quickly that it would be difficult for a general oncologist to keep up. Furthermore, melanom specialty clinics have teams of doctors from various specialities who meet to discuss the cases from their various perspectives. This team approach is very beneficial to the patient. There are several patients here who are with Kaiser. In some cases, Kaiser was very good about paying for treatment at a melanoma specialty center and other cases where Kaiser was a real pain-in-the-neck. If you continue to have trouble, post a message here and ask how others got Kaiser to pay.

And just to clarify, Phase I and Phase II clinical trials do not have "control arms"; Phase III trials have control arms (which may be a good thing or a bad thing depending on the trial). The one trial I mentioned yesterday does not have a control arm. The two arms are intradermal injections versus intramuscular injections. I am not advocating that your husband enter any clinical trials, much less which clinical trial. I just wanted you to know that not all clinical trials have control arms. 

I did relatively well on Interferon. I had a headache for a year, was nauseous a lot, nothing tasted the same, lost a bunch of weight, and was tired. However, I was able to keep up with much of my regular routine including working as an accountant for 30 hours a week and taking care of my kids. I was able to complete the entire year.

Now 13+ years later, I’m still here without ever having a reoccurrence. I see my derm every six months and my oncologist once a year. Was I one of the lucky ones? Was Interferon or the elective node removal what made me NED? We’ll never know nor do I really care as long as I got to this point.

Interferon can have some nasty and debilitating side effects for many. Had I been given a better choice at the time, I may have taken it. By all means, if a person can do something else, I would encourage that. But to try the “wait and see” instead of giving Interferon a chance, seems crazy to me! Some of the studies show the first month of Interferon is what does the most amount of good. Why not at least try a month? If it is horrible, stop! And a person may be lucky and have few but manageable side effects like I had and be able to complete the entire year.

It is certainly a personal decision so I wish you luck in whatever you choose. The one piece of advice I do have is once you have made a decision, stand behind it 110% and don’t look back. You can never win the “could of, should of, would of” game. Until recently, I had been on the MRF board for 9 years and have been exposed to quite a bite of melanoma research and information so I feel like I have a solid background in what I have seen and believe.

Should you want to contact me directly, my email address is [email protected]. Best of luck to your husband in his treatment and your family as caregivers helping out! That is an extremely important job!

Take care!

Cara

I did relatively well on Interferon. I had a headache for a year, was nauseous a lot, nothing tasted the same, lost a bunch of weight, and was tired. However, I was able to keep up with much of my regular routine including working as an accountant for 30 hours a week and taking care of my kids. I was able to complete the entire year.

Now 13+ years later, I’m still here without ever having a reoccurrence. I see my derm every six months and my oncologist once a year. Was I one of the lucky ones? Was Interferon or the elective node removal what made me NED? We’ll never know nor do I really care as long as I got to this point.

Interferon can have some nasty and debilitating side effects for many. Had I been given a better choice at the time, I may have taken it. By all means, if a person can do something else, I would encourage that. But to try the “wait and see” instead of giving Interferon a chance, seems crazy to me! Some of the studies show the first month of Interferon is what does the most amount of good. Why not at least try a month? If it is horrible, stop! And a person may be lucky and have few but manageable side effects like I had and be able to complete the entire year.

It is certainly a personal decision so I wish you luck in whatever you choose. The one piece of advice I do have is once you have made a decision, stand behind it 110% and don’t look back. You can never win the “could of, should of, would of” game. Until recently, I had been on the MRF board for 9 years and have been exposed to quite a bite of melanoma research and information so I feel like I have a solid background in what I have seen and believe.

Should you want to contact me directly, my email address is [email protected]. Best of luck to your husband in his treatment and your family as caregivers helping out! That is an extremely important job!

Take care!

Cara

I did relatively well on Interferon. I had a headache for a year, was nauseous a lot, nothing tasted the same, lost a bunch of weight, and was tired. However, I was able to keep up with much of my regular routine including working as an accountant for 30 hours a week and taking care of my kids. I was able to complete the entire year.

Now 13+ years later, I’m still here without ever having a reoccurrence. I see my derm every six months and my oncologist once a year. Was I one of the lucky ones? Was Interferon or the elective node removal what made me NED? We’ll never know nor do I really care as long as I got to this point.

Interferon can have some nasty and debilitating side effects for many. Had I been given a better choice at the time, I may have taken it. By all means, if a person can do something else, I would encourage that. But to try the “wait and see” instead of giving Interferon a chance, seems crazy to me! Some of the studies show the first month of Interferon is what does the most amount of good. Why not at least try a month? If it is horrible, stop! And a person may be lucky and have few but manageable side effects like I had and be able to complete the entire year.

It is certainly a personal decision so I wish you luck in whatever you choose. The one piece of advice I do have is once you have made a decision, stand behind it 110% and don’t look back. You can never win the “could of, should of, would of” game. Until recently, I had been on the MRF board for 9 years and have been exposed to quite a bite of melanoma research and information so I feel like I have a solid background in what I have seen and believe.

Should you want to contact me directly, my email address is [email protected]. Best of luck to your husband in his treatment and your family as caregivers helping out! That is an extremely important job!

Take care!

Cara

I am sorry to hear about your husband's diagnosis.

You're at the worst part of the whole process — the shock. Once that dies down your lives will return to normal. You're about to begin a new "normal" and anything new is scary.

You've been given a lot of good food for through. But here is my 2 cents worth —

Watch and wait (frequent observation) is a viable option and there are many survivors who are doing well on it. This option involves frequent doctor visits and scans. I think the first year you see the doctor every 3 months, second year every 4 months, and then every 6 months after that.

Interferon is a personal choice. Statistically speaking — interferon doesn't offer a whole lot more than doing watch and wait. I was shocked when a doctor told me the numbers. Aside from nasty side effects, it didn't offer much at all — except making you sick. It's slowly becoming "old school".

The clinical trial option is a good one. I'm in a MAGE trial right now. However, that particular trial is no longer recruiting. But I did see from another post in this thread that there is another MAGE trial going on. It's worth looking into. I chose my trial because it gave me the best of all worlds:

1. Frequent observation.

2. The study is a double-blind study that has a placebo arm with a 2 out of 3 chance of getting the drug.

3. Side effects of the vaccine in earlier studies showed it to have minimal/tolerable side effects.

I was diagnosed Stage III in December 2010. As of July 23, 2013, I am still NED!  NED is a great label to have — it stands for "No Evidence of Disease".  There are many Stage III patients on this forum who have been NED even longer than I have. At this point you need to hear that. When two separate friends of mine told me they each knew people with Stage III melanoma who had been around for 10+ years it was a huge morale booster for me.

That will be the doctor's main job: getting your husband to NED status and then making sure he stays there. And you've already made a good decision by making sure he heads to a melanoma center.

What's most important for both you and your husband right now: STAY AWAY FROM MEDICAL MELANOMA WEB SITES! Come to this forum or go to Melanoma International and fire away with questions or concerns between doctor visits. There's a lot of outdated stuff on melanoma on the web and it's best to stay away from it for now.

I am sorry to hear about your husband's diagnosis.

You're at the worst part of the whole process — the shock. Once that dies down your lives will return to normal. You're about to begin a new "normal" and anything new is scary.

You've been given a lot of good food for through. But here is my 2 cents worth —

Watch and wait (frequent observation) is a viable option and there are many survivors who are doing well on it. This option involves frequent doctor visits and scans. I think the first year you see the doctor every 3 months, second year every 4 months, and then every 6 months after that.

Interferon is a personal choice. Statistically speaking — interferon doesn't offer a whole lot more than doing watch and wait. I was shocked when a doctor told me the numbers. Aside from nasty side effects, it didn't offer much at all — except making you sick. It's slowly becoming "old school".

The clinical trial option is a good one. I'm in a MAGE trial right now. However, that particular trial is no longer recruiting. But I did see from another post in this thread that there is another MAGE trial going on. It's worth looking into. I chose my trial because it gave me the best of all worlds:

1. Frequent observation.

2. The study is a double-blind study that has a placebo arm with a 2 out of 3 chance of getting the drug.

3. Side effects of the vaccine in earlier studies showed it to have minimal/tolerable side effects.

I was diagnosed Stage III in December 2010. As of July 23, 2013, I am still NED!  NED is a great label to have — it stands for "No Evidence of Disease".  There are many Stage III patients on this forum who have been NED even longer than I have. At this point you need to hear that. When two separate friends of mine told me they each knew people with Stage III melanoma who had been around for 10+ years it was a huge morale booster for me.

That will be the doctor's main job: getting your husband to NED status and then making sure he stays there. And you've already made a good decision by making sure he heads to a melanoma center.

What's most important for both you and your husband right now: STAY AWAY FROM MEDICAL MELANOMA WEB SITES! Come to this forum or go to Melanoma International and fire away with questions or concerns between doctor visits. There's a lot of outdated stuff on melanoma on the web and it's best to stay away from it for now.

I am sorry to hear about your husband's diagnosis.

You're at the worst part of the whole process — the shock. Once that dies down your lives will return to normal. You're about to begin a new "normal" and anything new is scary.

You've been given a lot of good food for through. But here is my 2 cents worth —

Watch and wait (frequent observation) is a viable option and there are many survivors who are doing well on it. This option involves frequent doctor visits and scans. I think the first year you see the doctor every 3 months, second year every 4 months, and then every 6 months after that.

Interferon is a personal choice. Statistically speaking — interferon doesn't offer a whole lot more than doing watch and wait. I was shocked when a doctor told me the numbers. Aside from nasty side effects, it didn't offer much at all — except making you sick. It's slowly becoming "old school".

The clinical trial option is a good one. I'm in a MAGE trial right now. However, that particular trial is no longer recruiting. But I did see from another post in this thread that there is another MAGE trial going on. It's worth looking into. I chose my trial because it gave me the best of all worlds:

1. Frequent observation.

2. The study is a double-blind study that has a placebo arm with a 2 out of 3 chance of getting the drug.

3. Side effects of the vaccine in earlier studies showed it to have minimal/tolerable side effects.

I was diagnosed Stage III in December 2010. As of July 23, 2013, I am still NED!  NED is a great label to have — it stands for "No Evidence of Disease".  There are many Stage III patients on this forum who have been NED even longer than I have. At this point you need to hear that. When two separate friends of mine told me they each knew people with Stage III melanoma who had been around for 10+ years it was a huge morale booster for me.

That will be the doctor's main job: getting your husband to NED status and then making sure he stays there. And you've already made a good decision by making sure he heads to a melanoma center.

What's most important for both you and your husband right now: STAY AWAY FROM MEDICAL MELANOMA WEB SITES! Come to this forum or go to Melanoma International and fire away with questions or concerns between doctor visits. There's a lot of outdated stuff on melanoma on the web and it's best to stay away from it for now.

Brooke,

   I've read the other replies and have nothing much to add on the clinical side. I agree with the comment that the shock of diagnosis has been the worst part so far.

   I hope you will be able to find a way to do something for yourself in all of this – hard, I'm sure, with two little ones and being a primary caregiver. Ask your Kaiser oncologist if there is a cancer survivor/caregiver support group that you could go to, or perhaps just ask for a few sessions of private therapy to help you adjust to your new role. Or perhaps just ask your PCP whether s/he knows of resources in Steamboat Springs that you could tap into.

   I've written a little about this on my blog. Feel free to contact me if you think talking or emailing with another caregiver could help you.

~Hazel

Brooke,

   I've read the other replies and have nothing much to add on the clinical side. I agree with the comment that the shock of diagnosis has been the worst part so far.

   I hope you will be able to find a way to do something for yourself in all of this – hard, I'm sure, with two little ones and being a primary caregiver. Ask your Kaiser oncologist if there is a cancer survivor/caregiver support group that you could go to, or perhaps just ask for a few sessions of private therapy to help you adjust to your new role. Or perhaps just ask your PCP whether s/he knows of resources in Steamboat Springs that you could tap into.

   I've written a little about this on my blog. Feel free to contact me if you think talking or emailing with another caregiver could help you.

~Hazel

Brooke,

   I've read the other replies and have nothing much to add on the clinical side. I agree with the comment that the shock of diagnosis has been the worst part so far.

   I hope you will be able to find a way to do something for yourself in all of this – hard, I'm sure, with two little ones and being a primary caregiver. Ask your Kaiser oncologist if there is a cancer survivor/caregiver support group that you could go to, or perhaps just ask for a few sessions of private therapy to help you adjust to your new role. Or perhaps just ask your PCP whether s/he knows of resources in Steamboat Springs that you could tap into.

   I've written a little about this on my blog. Feel free to contact me if you think talking or emailing with another caregiver could help you.

~Hazel

Hi Brooke,

It doesn't matter if your husband chooses interferon, watch & wait, or a clinical trial — if the doctors find "something" during a scan, he'll be at Stage IIIC or IV. According to stastics, interferon will delay a recurrence only by a matter of a few months over wacth & wait (forget the exact number). Some folks don't want to make themselves sick for an entire year so they choose other options. Others just want to do "something" so they choose interferon. But as I mentioned earlier, it's becoming "old school".

What treatment he chooses is up to him. A good melanoma doctor will give him the details on each option so that he can make the best decision for himself.

If the melanoma center near you doesn't have he trial you want, you may have to travel to a center that does. For example, one forum member traveled from Washington state to Johns Hopkins in Baltimore because they had the trial that he was interested in.

Melanoma seems to be the "hot topic" in news these days. Over the past two years or so we've seen 4 new drugs approved. And this is HUGE! I'm in a Phase III trial for a MAGE vaccine and if results for this phase work out well, we'll see a new treatment option for Stage IIIB/C patients. The catch to this trial is that your tumor has to test positive for the MAGE protein.

Don't get me wrong, this still a serious cancer, but the survivor list is growing.

The doctor who told you to do your homework was an a$$. Good for you for seeking out a different doctor.

Brooke – I sent you a private message.

Brooke – I sent you a private message.

Brooke – I sent you a private message.

They probably won't test for the MAGE protein yet because the vaccine is still in a trial status.

It's good that he was tested for BRAF and KIT. It's good to get these done up front.

If you have family in MN, then I'd check out the Mayo Clinic.

Good thing you fired that doctor!

My husband is Stage IIIB, diagnosed in April 2008 with 3.4mm nodular melanoma. Things were fine at that point after wide excision and SNB.  18 months later recurred with a  5 cm lymph node with extranodal extension, not a pretty picture.  Had high dose radiation to axilla and LND.  Does have lymphedema.  Also received 1 year treatment with Leukine shots.  Now 3 1/2 years later after end of treatment he is just fine.  Still NED and now only gets a chest x-ray and skin checks every 6 months, no more scans.  There is alot of hope and success with different treatments.  It is all a crapshoot and you do your best with the advice you are given by the doctors who specialize in melanoma treatment.  In time you worry less but it never leaves your thoughts.  But we feel that the Leukine treatment for him probably beefed up his own immune system and at this stage has been able to fight off any melanoma that  could still be in his body.  Good luck to you as you wage this battle.  You have many friends on this support site and I know it was invaluable to us as we started down this road.  Many people go on living well after this dire of a diagnosis.  But it is frightening.  No doubt.     

My husband is Stage IIIB, diagnosed in April 2008 with 3.4mm nodular melanoma. Things were fine at that point after wide excision and SNB.  18 months later recurred with a  5 cm lymph node with extranodal extension, not a pretty picture.  Had high dose radiation to axilla and LND.  Does have lymphedema.  Also received 1 year treatment with Leukine shots.  Now 3 1/2 years later after end of treatment he is just fine.  Still NED and now only gets a chest x-ray and skin checks every 6 months, no more scans.  There is alot of hope and success with different treatments.  It is all a crapshoot and you do your best with the advice you are given by the doctors who specialize in melanoma treatment.  In time you worry less but it never leaves your thoughts.  But we feel that the Leukine treatment for him probably beefed up his own immune system and at this stage has been able to fight off any melanoma that  could still be in his body.  Good luck to you as you wage this battle.  You have many friends on this support site and I know it was invaluable to us as we started down this road.  Many people go on living well after this dire of a diagnosis.  But it is frightening.  No doubt.     

My husband is Stage IIIB, diagnosed in April 2008 with 3.4mm nodular melanoma. Things were fine at that point after wide excision and SNB.  18 months later recurred with a  5 cm lymph node with extranodal extension, not a pretty picture.  Had high dose radiation to axilla and LND.  Does have lymphedema.  Also received 1 year treatment with Leukine shots.  Now 3 1/2 years later after end of treatment he is just fine.  Still NED and now only gets a chest x-ray and skin checks every 6 months, no more scans.  There is alot of hope and success with different treatments.  It is all a crapshoot and you do your best with the advice you are given by the doctors who specialize in melanoma treatment.  In time you worry less but it never leaves your thoughts.  But we feel that the Leukine treatment for him probably beefed up his own immune system and at this stage has been able to fight off any melanoma that  could still be in his body.  Good luck to you as you wage this battle.  You have many friends on this support site and I know it was invaluable to us as we started down this road.  Many people go on living well after this dire of a diagnosis.  But it is frightening.  No doubt.     

Hi Brooke, You are in Colorado? I am in Castle Rock. I just want to tell you that I am a stage 3b. I had a 3.1mm ulcerated lesion on my lower leg and two of my groin lymph nodes had melanoma in them. This was in early 2001 and at the time all they offered for treatment was interferon, 1 month of high dose and 11 months of  low dose. I only lasted through 8 doses (high dose). That's it. No other treatment, no scans. I do still see my oncologist once or twice a year. I am, right now, sending positive thoughts your way.

Cynthia, 12 years NED

Hi Brooke, You are in Colorado? I am in Castle Rock. I just want to tell you that I am a stage 3b. I had a 3.1mm ulcerated lesion on my lower leg and two of my groin lymph nodes had melanoma in them. This was in early 2001 and at the time all they offered for treatment was interferon, 1 month of high dose and 11 months of  low dose. I only lasted through 8 doses (high dose). That's it. No other treatment, no scans. I do still see my oncologist once or twice a year. I am, right now, sending positive thoughts your way.

Cynthia, 12 years NED

Hi Brooke, You are in Colorado? I am in Castle Rock. I just want to tell you that I am a stage 3b. I had a 3.1mm ulcerated lesion on my lower leg and two of my groin lymph nodes had melanoma in them. This was in early 2001 and at the time all they offered for treatment was interferon, 1 month of high dose and 11 months of  low dose. I only lasted through 8 doses (high dose). That's it. No other treatment, no scans. I do still see my oncologist once or twice a year. I am, right now, sending positive thoughts your way.

Cynthia, 12 years NED

I am a Stage 3b melanoma case – diagnosed June 2008  –  4 mm primary (on left fore arm, Ulcerated ) , big satellite tumor, 2 lymph nodes affected  – and  my funeral has still  NOT  happened (5 years and still kicking ) !!

It is normal to be scared with the initial diagnosis  – but I feel you are over-reacting … there are a lot of treatment options these days and I am sure with proper conventional treatment/care (and avoiding mid day Sun , physical exercise, Yoga, supplements  etc. ) , your husband will survive this.  Also, I strongly suggest that your husband should opt for the one month strong dose of interferon instead of the one year thing.

I am a Stage 3b melanoma case – diagnosed June 2008  –  4 mm primary (on left fore arm, Ulcerated ) , big satellite tumor, 2 lymph nodes affected  – and  my funeral has still  NOT  happened (5 years and still kicking ) !!

It is normal to be scared with the initial diagnosis  – but I feel you are over-reacting … there are a lot of treatment options these days and I am sure with proper conventional treatment/care (and avoiding mid day Sun , physical exercise, Yoga, supplements  etc. ) , your husband will survive this.  Also, I strongly suggest that your husband should opt for the one month strong dose of interferon instead of the one year thing.

I am a Stage 3b melanoma case – diagnosed June 2008  –  4 mm primary (on left fore arm, Ulcerated ) , big satellite tumor, 2 lymph nodes affected  – and  my funeral has still  NOT  happened (5 years and still kicking ) !!

It is normal to be scared with the initial diagnosis  – but I feel you are over-reacting … there are a lot of treatment options these days and I am sure with proper conventional treatment/care (and avoiding mid day Sun , physical exercise, Yoga, supplements  etc. ) , your husband will survive this.  Also, I strongly suggest that your husband should opt for the one month strong dose of interferon instead of the one year thing.

I was diagnosed with Stage IV last August, had it removed along with an SNB.  The local hospitals here in Jacksonville are not Melanoma specialists and pushed me hard to go into the IPI vs interferon trial. IPI sounded interesting but was told that interferon has a 2-3% lift, so what?  It sounded like a full year of torture to me.  I did some research and determined MD Anderson, Moffitt, or Sloan would be good places to get second opinions from.

Thank god I made the trip to Moffitt.  I wasnt eligible for the PD-1 trial, but I did get into the Mage trial for Stage IV resected patients.  I was the 5th patient of Moffitt's to receive it.  It is not double-blind with a placebo.  You either get the Mage or Mage with a Poly immune booster.  I get the Mage with Poly IC:LC.  The side effects are minimal, fevers that decrease with each shot, a small rash at the injection site, soreness and some fatigue.  The results are really good , I'm still NED!  This may or may not be a cure.  My personal belief is that it may be a good roadblock, slowing the disease down.  If so, it's buying me time until better treatments or a cure is introduced.  Until then, I live from CAT scan to CAT scan.

All that I can say is that there is a huge diffference between visiting a local oncologist (that treats every cancer) versus going to a Melanoma specialist. Moffitt has a wing that does nothing but Melanoma treatment and research.  They have a super computer and their own laboratories with staff research scientists. There is so much research being done on Melanoma all over the U.S.

My advice? Do your own research and find a Melanoma specialist.  Spend the money, take the time,  make the trip.  Life is too precious.

I was diagnosed with Stage IV last August, had it removed along with an SNB.  The local hospitals here in Jacksonville are not Melanoma specialists and pushed me hard to go into the IPI vs interferon trial. IPI sounded interesting but was told that interferon has a 2-3% lift, so what?  It sounded like a full year of torture to me.  I did some research and determined MD Anderson, Moffitt, or Sloan would be good places to get second opinions from.

Thank god I made the trip to Moffitt.  I wasnt eligible for the PD-1 trial, but I did get into the Mage trial for Stage IV resected patients.  I was the 5th patient of Moffitt's to receive it.  It is not double-blind with a placebo.  You either get the Mage or Mage with a Poly immune booster.  I get the Mage with Poly IC:LC.  The side effects are minimal, fevers that decrease with each shot, a small rash at the injection site, soreness and some fatigue.  The results are really good , I'm still NED!  This may or may not be a cure.  My personal belief is that it may be a good roadblock, slowing the disease down.  If so, it's buying me time until better treatments or a cure is introduced.  Until then, I live from CAT scan to CAT scan.

All that I can say is that there is a huge diffference between visiting a local oncologist (that treats every cancer) versus going to a Melanoma specialist. Moffitt has a wing that does nothing but Melanoma treatment and research.  They have a super computer and their own laboratories with staff research scientists. There is so much research being done on Melanoma all over the U.S.

My advice? Do your own research and find a Melanoma specialist.  Spend the money, take the time,  make the trip.  Life is too precious.

I was diagnosed with Stage IV last August, had it removed along with an SNB.  The local hospitals here in Jacksonville are not Melanoma specialists and pushed me hard to go into the IPI vs interferon trial. IPI sounded interesting but was told that interferon has a 2-3% lift, so what?  It sounded like a full year of torture to me.  I did some research and determined MD Anderson, Moffitt, or Sloan would be good places to get second opinions from.

Thank god I made the trip to Moffitt.  I wasnt eligible for the PD-1 trial, but I did get into the Mage trial for Stage IV resected patients.  I was the 5th patient of Moffitt's to receive it.  It is not double-blind with a placebo.  You either get the Mage or Mage with a Poly immune booster.  I get the Mage with Poly IC:LC.  The side effects are minimal, fevers that decrease with each shot, a small rash at the injection site, soreness and some fatigue.  The results are really good , I'm still NED!  This may or may not be a cure.  My personal belief is that it may be a good roadblock, slowing the disease down.  If so, it's buying me time until better treatments or a cure is introduced.  Until then, I live from CAT scan to CAT scan.

All that I can say is that there is a huge diffference between visiting a local oncologist (that treats every cancer) versus going to a Melanoma specialist. Moffitt has a wing that does nothing but Melanoma treatment and research.  They have a super computer and their own laboratories with staff research scientists. There is so much research being done on Melanoma all over the U.S.

My advice? Do your own research and find a Melanoma specialist.  Spend the money, take the time,  make the trip.  Life is too precious.

sorry to hear about your husband and 'meet' you this way.  I was originally diagnosed 3b (in Oct 2010).  My primary was upper right back 4.5 mm with ulceration and positive sentinel lymph node.  While trying to get in the Ipi trial at Sloan in Jan 2011 they found a dozen spots on my lungs.  Never got in to that trial.  Tested positive for melanoma in lungs.  Then tried for the Zelboraf trial and scans showed no evidence of disease.  I went with a watch and wait.  Scans every 3 months.  In May last year it came back with a met to my small intestine.  Did Zelboraf for 4 months, then Ipi (with surgery in between to remove 8" of my small intestine).  Didn't take care of the small tumors in my lymph nodes near my small intestine.  So I started Merck's anti-pd1 trial in Jan.  Every scan still shows improvement.  I joke with my doctor that unless you saw a scan you'd never know I had cancer (I look ok and bloodwork is typically all perfect).  

As other said, and you've realized, it's so important to get with a melanoma specialist!  I am seen at Sloan Kettering.  Great team there.  It can make a big difference.  It's scary, but there have been so many advancements in the last few years!  

Hang in there.  Great folks/resources here!

Erin

sorry to hear about your husband and 'meet' you this way.  I was originally diagnosed 3b (in Oct 2010).  My primary was upper right back 4.5 mm with ulceration and positive sentinel lymph node.  While trying to get in the Ipi trial at Sloan in Jan 2011 they found a dozen spots on my lungs.  Never got in to that trial.  Tested positive for melanoma in lungs.  Then tried for the Zelboraf trial and scans showed no evidence of disease.  I went with a watch and wait.  Scans every 3 months.  In May last year it came back with a met to my small intestine.  Did Zelboraf for 4 months, then Ipi (with surgery in between to remove 8" of my small intestine).  Didn't take care of the small tumors in my lymph nodes near my small intestine.  So I started Merck's anti-pd1 trial in Jan.  Every scan still shows improvement.  I joke with my doctor that unless you saw a scan you'd never know I had cancer (I look ok and bloodwork is typically all perfect).  

As other said, and you've realized, it's so important to get with a melanoma specialist!  I am seen at Sloan Kettering.  Great team there.  It can make a big difference.  It's scary, but there have been so many advancements in the last few years!  

Hang in there.  Great folks/resources here!

Erin

sorry to hear about your husband and 'meet' you this way.  I was originally diagnosed 3b (in Oct 2010).  My primary was upper right back 4.5 mm with ulceration and positive sentinel lymph node.  While trying to get in the Ipi trial at Sloan in Jan 2011 they found a dozen spots on my lungs.  Never got in to that trial.  Tested positive for melanoma in lungs.  Then tried for the Zelboraf trial and scans showed no evidence of disease.  I went with a watch and wait.  Scans every 3 months.  In May last year it came back with a met to my small intestine.  Did Zelboraf for 4 months, then Ipi (with surgery in between to remove 8" of my small intestine).  Didn't take care of the small tumors in my lymph nodes near my small intestine.  So I started Merck's anti-pd1 trial in Jan.  Every scan still shows improvement.  I joke with my doctor that unless you saw a scan you'd never know I had cancer (I look ok and bloodwork is typically all perfect).  

As other said, and you've realized, it's so important to get with a melanoma specialist!  I am seen at Sloan Kettering.  Great team there.  It can make a big difference.  It's scary, but there have been so many advancements in the last few years!  

Hang in there.  Great folks/resources here!

Erin

Brooke:

Last February 2013 my wife noticed a small raised pink growth mid-line just under the hair line on the back of my neck.  She thought it looked like a harmless blood blister.  My son also thought it looked like a harmless blood blister and offered to lance the growth with a small sharp knife in order to drain the fluid from the growth.

I asked my wife to take a photo of the growth with her smart phone and email the photo to me.  I looked at the photo and it did not look like anything I had seen before.  I googled skin cancer and within a few minutes I found a photo of a nodular melanoma tumor that looked just like mine.  The caption under the photo said that the patient did not survive the melanoma disease.

Understandably I became quite concerned and showed the nodular melanoma tumor photo posted on the web site to my wife.  She thought I was over reacting.  I saw my general practitioner the next day.  He told me that the growth on my neck did not look suspicious to him, but that he would refer me to a dermatologist.  The dermatologist's office offered me an appointment four weeks from the date of the appointment I had with the general practitioner. Because of the information and photos I had seen on the Internet I called my dermatologist's office serveral times every day for four days until I was offered an appointment one week after I had seen my general practitioner.

My dermatologist also told me that the growth on my neck did not look suspicious, but that she would remove it and have it biopsied since I was so concerned that it might be nodular melanoma.  My dermatologist telephoned me one week after she removed the growth from the back of my neck and she breathlessly told me that the growth was a 2.9mm deep nodular melanoma tumor with a high mitotic rate.  She told me not to be fatalistic, that Interferon was available as a treatment and that there are also clinical trials for people who have been diagnosed with nodular melanoma.

I had WLE surgery with 2.5cm margins and a Sentinal Lymph Node biopsy.  The surgeon actually removed five lymph nodes from the back of my head and from the side of my neck because they all had detectable levels of radiation in them.  The WLE skin and all five lymph nodes were negative for melanoma.  I have been staged as 2A, even though my nodular tumor had a high mitotic rate and was 2.9mm deep.

I was not offered Interferon or any other treatment after my surgery.  I did have a brain MRI and a PET-CT scan after my surgery.  The brain MRI and the PET-CT scan did not detect any signs of melanoma.  I am seeing my surgeon and my dermatologist and my oncologist every three months.  My oncologist will be monitoring LDH in my blood, scheduling chest xrays, MRI's and PET-CT scans as appropriate.  The surgeon will be check for signs of lymph node enlargement in my upper body.  My dermatologist will be perform visual skin inspections to look for signs of new primary tumors or for signs of recurrance of cancer cells from the excised primary tumor.

As other people have suggested to you, find the best melanoma specialists that you possibly can.  Nodular melanoma only represents one percent of all skin cancers, but it is responsible for approximately thirty percent of all skin cancer fatalities.

Help your husband do everything possible to strengthen his immune system: diet, exercise, yoga, meditation, talking therapy.  It will also be important for you to do everything possible to keep yourself positive and healthy.

You and your husband have more allies in your battle against melanoma that you can imagine.  Best wishes to you and to your family.

Brooke:

Last February 2013 my wife noticed a small raised pink growth mid-line just under the hair line on the back of my neck.  She thought it looked like a harmless blood blister.  My son also thought it looked like a harmless blood blister and offered to lance the growth with a small sharp knife in order to drain the fluid from the growth.

I asked my wife to take a photo of the growth with her smart phone and email the photo to me.  I looked at the photo and it did not look like anything I had seen before.  I googled skin cancer and within a few minutes I found a photo of a nodular melanoma tumor that looked just like mine.  The caption under the photo said that the patient did not survive the melanoma disease.

Understandably I became quite concerned and showed the nodular melanoma tumor photo posted on the web site to my wife.  She thought I was over reacting.  I saw my general practitioner the next day.  He told me that the growth on my neck did not look suspicious to him, but that he would refer me to a dermatologist.  The dermatologist's office offered me an appointment four weeks from the date of the appointment I had with the general practitioner. Because of the information and photos I had seen on the Internet I called my dermatologist's office serveral times every day for four days until I was offered an appointment one week after I had seen my general practitioner.

My dermatologist also told me that the growth on my neck did not look suspicious, but that she would remove it and have it biopsied since I was so concerned that it might be nodular melanoma.  My dermatologist telephoned me one week after she removed the growth from the back of my neck and she breathlessly told me that the growth was a 2.9mm deep nodular melanoma tumor with a high mitotic rate.  She told me not to be fatalistic, that Interferon was available as a treatment and that there are also clinical trials for people who have been diagnosed with nodular melanoma.

I had WLE surgery with 2.5cm margins and a Sentinal Lymph Node biopsy.  The surgeon actually removed five lymph nodes from the back of my head and from the side of my neck because they all had detectable levels of radiation in them.  The WLE skin and all five lymph nodes were negative for melanoma.  I have been staged as 2A, even though my nodular tumor had a high mitotic rate and was 2.9mm deep.

I was not offered Interferon or any other treatment after my surgery.  I did have a brain MRI and a PET-CT scan after my surgery.  The brain MRI and the PET-CT scan did not detect any signs of melanoma.  I am seeing my surgeon and my dermatologist and my oncologist every three months.  My oncologist will be monitoring LDH in my blood, scheduling chest xrays, MRI's and PET-CT scans as appropriate.  The surgeon will be check for signs of lymph node enlargement in my upper body.  My dermatologist will be perform visual skin inspections to look for signs of new primary tumors or for signs of recurrance of cancer cells from the excised primary tumor.

As other people have suggested to you, find the best melanoma specialists that you possibly can.  Nodular melanoma only represents one percent of all skin cancers, but it is responsible for approximately thirty percent of all skin cancer fatalities.

Help your husband do everything possible to strengthen his immune system: diet, exercise, yoga, meditation, talking therapy.  It will also be important for you to do everything possible to keep yourself positive and healthy.

You and your husband have more allies in your battle against melanoma that you can imagine.  Best wishes to you and to your family.

Brooke:

Last February 2013 my wife noticed a small raised pink growth mid-line just under the hair line on the back of my neck.  She thought it looked like a harmless blood blister.  My son also thought it looked like a harmless blood blister and offered to lance the growth with a small sharp knife in order to drain the fluid from the growth.

I asked my wife to take a photo of the growth with her smart phone and email the photo to me.  I looked at the photo and it did not look like anything I had seen before.  I googled skin cancer and within a few minutes I found a photo of a nodular melanoma tumor that looked just like mine.  The caption under the photo said that the patient did not survive the melanoma disease.

Understandably I became quite concerned and showed the nodular melanoma tumor photo posted on the web site to my wife.  She thought I was over reacting.  I saw my general practitioner the next day.  He told me that the growth on my neck did not look suspicious to him, but that he would refer me to a dermatologist.  The dermatologist's office offered me an appointment four weeks from the date of the appointment I had with the general practitioner. Because of the information and photos I had seen on the Internet I called my dermatologist's office serveral times every day for four days until I was offered an appointment one week after I had seen my general practitioner.

My dermatologist also told me that the growth on my neck did not look suspicious, but that she would remove it and have it biopsied since I was so concerned that it might be nodular melanoma.  My dermatologist telephoned me one week after she removed the growth from the back of my neck and she breathlessly told me that the growth was a 2.9mm deep nodular melanoma tumor with a high mitotic rate.  She told me not to be fatalistic, that Interferon was available as a treatment and that there are also clinical trials for people who have been diagnosed with nodular melanoma.

I had WLE surgery with 2.5cm margins and a Sentinal Lymph Node biopsy.  The surgeon actually removed five lymph nodes from the back of my head and from the side of my neck because they all had detectable levels of radiation in them.  The WLE skin and all five lymph nodes were negative for melanoma.  I have been staged as 2A, even though my nodular tumor had a high mitotic rate and was 2.9mm deep.

I was not offered Interferon or any other treatment after my surgery.  I did have a brain MRI and a PET-CT scan after my surgery.  The brain MRI and the PET-CT scan did not detect any signs of melanoma.  I am seeing my surgeon and my dermatologist and my oncologist every three months.  My oncologist will be monitoring LDH in my blood, scheduling chest xrays, MRI's and PET-CT scans as appropriate.  The surgeon will be check for signs of lymph node enlargement in my upper body.  My dermatologist will be perform visual skin inspections to look for signs of new primary tumors or for signs of recurrance of cancer cells from the excised primary tumor.

As other people have suggested to you, find the best melanoma specialists that you possibly can.  Nodular melanoma only represents one percent of all skin cancers, but it is responsible for approximately thirty percent of all skin cancer fatalities.

Help your husband do everything possible to strengthen his immune system: diet, exercise, yoga, meditation, talking therapy.  It will also be important for you to do everything possible to keep yourself positive and healthy.

You and your husband have more allies in your battle against melanoma that you can imagine.  Best wishes to you and to your family.

If you don't have them yet, get copies of all the scans, pathology reports, bloodwork reports, and the surgical notes.  Keep a copy.

If you don't have them yet, get copies of all the scans, pathology reports, bloodwork reports, and the surgical notes.  Keep a copy.

I agree with what others have said:

1) always get copies of all medical tests and reports AND get a CD of all scan images. Bring them to every doctor's appointment but do not allow the doctor to keep them. They can make copies, but you keep the originals. 

2) get your husband to a melanoma specialty clinic. Melanoma is too tricky and the treatments are advancing so quickly that it would be difficult for a general oncologist to keep up. Furthermore, melanom specialty clinics have teams of doctors from various specialities who meet to discuss the cases from their various perspectives. This team approach is very beneficial to the patient. There are several patients here who are with Kaiser. In some cases, Kaiser was very good about paying for treatment at a melanoma specialty center and other cases where Kaiser was a real pain-in-the-neck. If you continue to have trouble, post a message here and ask how others got Kaiser to pay.

And just to clarify, Phase I and Phase II clinical trials do not have "control arms"; Phase III trials have control arms (which may be a good thing or a bad thing depending on the trial). The one trial I mentioned yesterday does not have a control arm. The two arms are intradermal injections versus intramuscular injections. I am not advocating that your husband enter any clinical trials, much less which clinical trial. I just wanted you to know that not all clinical trials have control arms. 

I agree with what others have said:

1) always get copies of all medical tests and reports AND get a CD of all scan images. Bring them to every doctor's appointment but do not allow the doctor to keep them. They can make copies, but you keep the originals. 

2) get your husband to a melanoma specialty clinic. Melanoma is too tricky and the treatments are advancing so quickly that it would be difficult for a general oncologist to keep up. Furthermore, melanom specialty clinics have teams of doctors from various specialities who meet to discuss the cases from their various perspectives. This team approach is very beneficial to the patient. There are several patients here who are with Kaiser. In some cases, Kaiser was very good about paying for treatment at a melanoma specialty center and other cases where Kaiser was a real pain-in-the-neck. If you continue to have trouble, post a message here and ask how others got Kaiser to pay.

And just to clarify, Phase I and Phase II clinical trials do not have "control arms"; Phase III trials have control arms (which may be a good thing or a bad thing depending on the trial). The one trial I mentioned yesterday does not have a control arm. The two arms are intradermal injections versus intramuscular injections. I am not advocating that your husband enter any clinical trials, much less which clinical trial. I just wanted you to know that not all clinical trials have control arms. 

Hi Brooke,

It doesn't matter if your husband chooses interferon, watch & wait, or a clinical trial — if the doctors find "something" during a scan, he'll be at Stage IIIC or IV. According to stastics, interferon will delay a recurrence only by a matter of a few months over wacth & wait (forget the exact number). Some folks don't want to make themselves sick for an entire year so they choose other options. Others just want to do "something" so they choose interferon. But as I mentioned earlier, it's becoming "old school".

What treatment he chooses is up to him. A good melanoma doctor will give him the details on each option so that he can make the best decision for himself.

If the melanoma center near you doesn't have he trial you want, you may have to travel to a center that does. For example, one forum member traveled from Washington state to Johns Hopkins in Baltimore because they had the trial that he was interested in.

Melanoma seems to be the "hot topic" in news these days. Over the past two years or so we've seen 4 new drugs approved. And this is HUGE! I'm in a Phase III trial for a MAGE vaccine and if results for this phase work out well, we'll see a new treatment option for Stage IIIB/C patients. The catch to this trial is that your tumor has to test positive for the MAGE protein.

Don't get me wrong, this still a serious cancer, but the survivor list is growing.

The doctor who told you to do your homework was an a$$. Good for you for seeking out a different doctor.

Hi Brooke,

It doesn't matter if your husband chooses interferon, watch & wait, or a clinical trial — if the doctors find "something" during a scan, he'll be at Stage IIIC or IV. According to stastics, interferon will delay a recurrence only by a matter of a few months over wacth & wait (forget the exact number). Some folks don't want to make themselves sick for an entire year so they choose other options. Others just want to do "something" so they choose interferon. But as I mentioned earlier, it's becoming "old school".

What treatment he chooses is up to him. A good melanoma doctor will give him the details on each option so that he can make the best decision for himself.

If the melanoma center near you doesn't have he trial you want, you may have to travel to a center that does. For example, one forum member traveled from Washington state to Johns Hopkins in Baltimore because they had the trial that he was interested in.

Melanoma seems to be the "hot topic" in news these days. Over the past two years or so we've seen 4 new drugs approved. And this is HUGE! I'm in a Phase III trial for a MAGE vaccine and if results for this phase work out well, we'll see a new treatment option for Stage IIIB/C patients. The catch to this trial is that your tumor has to test positive for the MAGE protein.

Don't get me wrong, this still a serious cancer, but the survivor list is growing.

The doctor who told you to do your homework was an a$$. Good for you for seeking out a different doctor.

They probably won't test for the MAGE protein yet because the vaccine is still in a trial status.

It's good that he was tested for BRAF and KIT. It's good to get these done up front.

If you have family in MN, then I'd check out the Mayo Clinic.

Good thing you fired that doctor!

They probably won't test for the MAGE protein yet because the vaccine is still in a trial status.

It's good that he was tested for BRAF and KIT. It's good to get these done up front.

If you have family in MN, then I'd check out the Mayo Clinic.

Good thing you fired that doctor!