Just two more question

Not meaning to be blunt, but your wife has stage 4 melanoma and needs to run, not walk to a melanoma specialist ASAP!! It doesn’t matter that she had her tumors removed, they were in various places in her body, so melanoma cells have already been in her blood and lymph nodes, so she is still Stage 4!!!!! My husband became Stage 4 in July 2011 with one lung tumor which he had removed, but he was NED (No evidence of disease) for only 2 months before the cells made their way to his brain. I don’t mean to scare you, but melanoma is a tricky, relentless, unpredictable disease and you need to get to a MELANOMA DOCTOR right away and start some form of treatment! Advocate for your wife, and give her the best possible chance! By the way, after a lot of treatment, my husband is still doing well and enjoying life, 18 months after his Stage 4 diagnosis. And, to answer your second question, the most treatment options are available to Stage 4 patients. BE STRONG AND FIGHT!! Best wishes, Valerie (Phil’s wife)

Not meaning to be blunt, but your wife has stage 4 melanoma and needs to run, not walk to a melanoma specialist ASAP!! It doesn’t matter that she had her tumors removed, they were in various places in her body, so melanoma cells have already been in her blood and lymph nodes, so she is still Stage 4!!!!! My husband became Stage 4 in July 2011 with one lung tumor which he had removed, but he was NED (No evidence of disease) for only 2 months before the cells made their way to his brain. I don’t mean to scare you, but melanoma is a tricky, relentless, unpredictable disease and you need to get to a MELANOMA DOCTOR right away and start some form of treatment! Advocate for your wife, and give her the best possible chance! By the way, after a lot of treatment, my husband is still doing well and enjoying life, 18 months after his Stage 4 diagnosis. And, to answer your second question, the most treatment options are available to Stage 4 patients. BE STRONG AND FIGHT!! Best wishes, Valerie (Phil’s wife)

Not meaning to be blunt, but your wife has stage 4 melanoma and needs to run, not walk to a melanoma specialist ASAP!! It doesn’t matter that she had her tumors removed, they were in various places in her body, so melanoma cells have already been in her blood and lymph nodes, so she is still Stage 4!!!!! My husband became Stage 4 in July 2011 with one lung tumor which he had removed, but he was NED (No evidence of disease) for only 2 months before the cells made their way to his brain. I don’t mean to scare you, but melanoma is a tricky, relentless, unpredictable disease and you need to get to a MELANOMA DOCTOR right away and start some form of treatment! Advocate for your wife, and give her the best possible chance! By the way, after a lot of treatment, my husband is still doing well and enjoying life, 18 months after his Stage 4 diagnosis. And, to answer your second question, the most treatment options are available to Stage 4 patients. BE STRONG AND FIGHT!! Best wishes, Valerie (Phil’s wife)

I'm new to this world too, so others are going to have better information.  But my understanding is 

1) Your cancer stage never goes down, although it may go up.  Once you are stage IV, you are stage IV even if all your tumors are removed and if you have no evidence of disease.  

2) Definitely both the stage and the locations and many other variables, such as your b-raf status or your overall health and age, determine the type of treatment.  I found the NCCN Guidelines for Patients – Melanoma to be a useful "beginners" guide to treatment, while also being quite detailed.

http://www.nccn.com/files/cancer-guidelines/melanoma/index.html#/1/zoomed

Good luck at Kaiser Riverside; is your wife seeing Dr Gailani?  My father (stage IV, skull met) has just been referred to him, and we expect to be getting an appointment in the next few weeks.  Please let us know how your appointment goes.  Dr Gailani seems to specialize in IL-2 treatment and is also working on mixing it with an experimental vaccine.  I think my father is not a good candidate for IL-2, at 76 years of age, but I expect Dr Gailani to be well informed on all types of treatment as a melanoma specialist.

 

My best wishes to your wife.

I'm new to this world too, so others are going to have better information.  But my understanding is 

1) Your cancer stage never goes down, although it may go up.  Once you are stage IV, you are stage IV even if all your tumors are removed and if you have no evidence of disease.  

2) Definitely both the stage and the locations and many other variables, such as your b-raf status or your overall health and age, determine the type of treatment.  I found the NCCN Guidelines for Patients – Melanoma to be a useful "beginners" guide to treatment, while also being quite detailed.

http://www.nccn.com/files/cancer-guidelines/melanoma/index.html#/1/zoomed

Good luck at Kaiser Riverside; is your wife seeing Dr Gailani?  My father (stage IV, skull met) has just been referred to him, and we expect to be getting an appointment in the next few weeks.  Please let us know how your appointment goes.  Dr Gailani seems to specialize in IL-2 treatment and is also working on mixing it with an experimental vaccine.  I think my father is not a good candidate for IL-2, at 76 years of age, but I expect Dr Gailani to be well informed on all types of treatment as a melanoma specialist.

 

My best wishes to your wife.

I'm new to this world too, so others are going to have better information.  But my understanding is 

1) Your cancer stage never goes down, although it may go up.  Once you are stage IV, you are stage IV even if all your tumors are removed and if you have no evidence of disease.  

2) Definitely both the stage and the locations and many other variables, such as your b-raf status or your overall health and age, determine the type of treatment.  I found the NCCN Guidelines for Patients – Melanoma to be a useful "beginners" guide to treatment, while also being quite detailed.

http://www.nccn.com/files/cancer-guidelines/melanoma/index.html#/1/zoomed

Good luck at Kaiser Riverside; is your wife seeing Dr Gailani?  My father (stage IV, skull met) has just been referred to him, and we expect to be getting an appointment in the next few weeks.  Please let us know how your appointment goes.  Dr Gailani seems to specialize in IL-2 treatment and is also working on mixing it with an experimental vaccine.  I think my father is not a good candidate for IL-2, at 76 years of age, but I expect Dr Gailani to be well informed on all types of treatment as a melanoma specialist.

 

My best wishes to your wife.

To answer your questions:

1. Stage IV means that the cancer has metastasized to distant organs. Once you are Stage IV, you are always Stage IV. However, when your tumors are gone, you are termed "Stage IV NED" (no evidence of disease). Some people become NED forever.

2. For cost/benefit reasons (cancer treatments are very expensive) very few treatments are available for Stages I, II, or III. I think the idea is why spend all that money and go through all those side-effects if the cancer MIGHT not come back? Several different, mostly new, treatments are available for Stage IV melanoma. Depending on the number and location of the tumor(s) your doctors might recommend surgery, radiation (either standard or "gamma knife"), chemotherapy (including the newer Zelboraf and about-to-be-approved MEK inhibitors), or immunotherapy (including IL-2 and the new ipi antibody). 

It sounds to me like you are beginning to learn one of the most difficult and stressful aspects of a melanoma diagnosis– you must educate YOURSELF and advocate for the best treatment YOURSELF. Melanoma is so complex and the treatments for it are evolving so quickly that very few doctors can keep up with it all. As a consequence, they might not think about or be comfortable recommending new treatments (especially those still in clinical trials). But those new treatments might be just the thing for you. The patients on this board who have had the most success fighting melanoma are those who took the time to educate themselves about melanoma and its treatment and then lobbied their doctors (or demanded a referral) to try something new or get them into a clinical trial. I think the best sources of information about mealnoma are the Melanoma International Foundation webinars ( melanomainternational.org/news/index.html ) and the AIM at Melanoma website ( aimatmelanoma.org/ ). And, of course, this is the best forum for asking questions and getting good advice. 

Before committing to a course of treatment, I would get a second opinion about your options. Dr. Gailiani at Kaiser Riverside has a good reputation. But he specializes in biochemo and he's only one doctor. The Angeles Clinic is a major melanoma center and they do a lot of clinical trials for melanoma. I suggest you get a consult with them, even if you have to pay for it out of your own pocket (I heard a figure of $400, but I'm not sure). BRAF testing of your wife's tumor is absolutely essential, and testing for nRAS and cKIT mutations is a good idea, too. 

I have read several posts on this board about patients struggling with Kaiser to pay for various referrals and treatments. Some say that Kaiser was great and they had no problem having their treatment covered. Others say that Kaiser was a real pain and had to be hounded into paying for some treatment or some specialist outside Kaiser's normal protocols. I hope you have no problem with Kaiser. However, again, you will have to be your own best advocate and be prepared to go to the mat for your wife if necessary. 

I am sorry that you and your wife have to join our community. But I hope we will be able to use our experience and the lessons we have learned and make your journey easier.

To answer your questions:

1. Stage IV means that the cancer has metastasized to distant organs. Once you are Stage IV, you are always Stage IV. However, when your tumors are gone, you are termed "Stage IV NED" (no evidence of disease). Some people become NED forever.

2. For cost/benefit reasons (cancer treatments are very expensive) very few treatments are available for Stages I, II, or III. I think the idea is why spend all that money and go through all those side-effects if the cancer MIGHT not come back? Several different, mostly new, treatments are available for Stage IV melanoma. Depending on the number and location of the tumor(s) your doctors might recommend surgery, radiation (either standard or "gamma knife"), chemotherapy (including the newer Zelboraf and about-to-be-approved MEK inhibitors), or immunotherapy (including IL-2 and the new ipi antibody). 

It sounds to me like you are beginning to learn one of the most difficult and stressful aspects of a melanoma diagnosis– you must educate YOURSELF and advocate for the best treatment YOURSELF. Melanoma is so complex and the treatments for it are evolving so quickly that very few doctors can keep up with it all. As a consequence, they might not think about or be comfortable recommending new treatments (especially those still in clinical trials). But those new treatments might be just the thing for you. The patients on this board who have had the most success fighting melanoma are those who took the time to educate themselves about melanoma and its treatment and then lobbied their doctors (or demanded a referral) to try something new or get them into a clinical trial. I think the best sources of information about mealnoma are the Melanoma International Foundation webinars ( melanomainternational.org/news/index.html ) and the AIM at Melanoma website ( aimatmelanoma.org/ ). And, of course, this is the best forum for asking questions and getting good advice. 

Before committing to a course of treatment, I would get a second opinion about your options. Dr. Gailiani at Kaiser Riverside has a good reputation. But he specializes in biochemo and he's only one doctor. The Angeles Clinic is a major melanoma center and they do a lot of clinical trials for melanoma. I suggest you get a consult with them, even if you have to pay for it out of your own pocket (I heard a figure of $400, but I'm not sure). BRAF testing of your wife's tumor is absolutely essential, and testing for nRAS and cKIT mutations is a good idea, too. 

I have read several posts on this board about patients struggling with Kaiser to pay for various referrals and treatments. Some say that Kaiser was great and they had no problem having their treatment covered. Others say that Kaiser was a real pain and had to be hounded into paying for some treatment or some specialist outside Kaiser's normal protocols. I hope you have no problem with Kaiser. However, again, you will have to be your own best advocate and be prepared to go to the mat for your wife if necessary. 

I am sorry that you and your wife have to join our community. But I hope we will be able to use our experience and the lessons we have learned and make your journey easier.

To answer your questions:

1. Stage IV means that the cancer has metastasized to distant organs. Once you are Stage IV, you are always Stage IV. However, when your tumors are gone, you are termed "Stage IV NED" (no evidence of disease). Some people become NED forever.

2. For cost/benefit reasons (cancer treatments are very expensive) very few treatments are available for Stages I, II, or III. I think the idea is why spend all that money and go through all those side-effects if the cancer MIGHT not come back? Several different, mostly new, treatments are available for Stage IV melanoma. Depending on the number and location of the tumor(s) your doctors might recommend surgery, radiation (either standard or "gamma knife"), chemotherapy (including the newer Zelboraf and about-to-be-approved MEK inhibitors), or immunotherapy (including IL-2 and the new ipi antibody). 

It sounds to me like you are beginning to learn one of the most difficult and stressful aspects of a melanoma diagnosis– you must educate YOURSELF and advocate for the best treatment YOURSELF. Melanoma is so complex and the treatments for it are evolving so quickly that very few doctors can keep up with it all. As a consequence, they might not think about or be comfortable recommending new treatments (especially those still in clinical trials). But those new treatments might be just the thing for you. The patients on this board who have had the most success fighting melanoma are those who took the time to educate themselves about melanoma and its treatment and then lobbied their doctors (or demanded a referral) to try something new or get them into a clinical trial. I think the best sources of information about mealnoma are the Melanoma International Foundation webinars ( melanomainternational.org/news/index.html ) and the AIM at Melanoma website ( aimatmelanoma.org/ ). And, of course, this is the best forum for asking questions and getting good advice. 

Before committing to a course of treatment, I would get a second opinion about your options. Dr. Gailiani at Kaiser Riverside has a good reputation. But he specializes in biochemo and he's only one doctor. The Angeles Clinic is a major melanoma center and they do a lot of clinical trials for melanoma. I suggest you get a consult with them, even if you have to pay for it out of your own pocket (I heard a figure of $400, but I'm not sure). BRAF testing of your wife's tumor is absolutely essential, and testing for nRAS and cKIT mutations is a good idea, too. 

I have read several posts on this board about patients struggling with Kaiser to pay for various referrals and treatments. Some say that Kaiser was great and they had no problem having their treatment covered. Others say that Kaiser was a real pain and had to be hounded into paying for some treatment or some specialist outside Kaiser's normal protocols. I hope you have no problem with Kaiser. However, again, you will have to be your own best advocate and be prepared to go to the mat for your wife if necessary. 

I am sorry that you and your wife have to join our community. But I hope we will be able to use our experience and the lessons we have learned and make your journey easier.

I was very satisfied with the treatment I got from Dr. Gailain and Kaiser Riverside. They're probably one of the highest volume providers of IL-2 in the country, and were totally professional and top-flight throughout my 2 courses/4 cycles of IL-2 I got, in the summer of 2010.

Yervoy and Zelboraf were not yet approved then, but I know from talking to Dr. Gailani's nurse since, that they're doing "a ton" of Yervoy down there now (and presumably Zelboraf as well.) 

Dr. Gailani is the real deal, in my experience and opinion, and is listed in the Aim at Melanoma web site's list of melanoma specializing oncologists in the U.S. 

I was very satisfied with the treatment I got from Dr. Gailain and Kaiser Riverside. They're probably one of the highest volume providers of IL-2 in the country, and were totally professional and top-flight throughout my 2 courses/4 cycles of IL-2 I got, in the summer of 2010.

Yervoy and Zelboraf were not yet approved then, but I know from talking to Dr. Gailani's nurse since, that they're doing "a ton" of Yervoy down there now (and presumably Zelboraf as well.) 

Dr. Gailani is the real deal, in my experience and opinion, and is listed in the Aim at Melanoma web site's list of melanoma specializing oncologists in the U.S. 

I was very satisfied with the treatment I got from Dr. Gailain and Kaiser Riverside. They're probably one of the highest volume providers of IL-2 in the country, and were totally professional and top-flight throughout my 2 courses/4 cycles of IL-2 I got, in the summer of 2010.

Yervoy and Zelboraf were not yet approved then, but I know from talking to Dr. Gailani's nurse since, that they're doing "a ton" of Yervoy down there now (and presumably Zelboraf as well.) 

Dr. Gailani is the real deal, in my experience and opinion, and is listed in the Aim at Melanoma web site's list of melanoma specializing oncologists in the U.S.