Hi

I am stage 3b, I had 17 lymph nodes removed 6/29/11. I started interferon the 1st of Oct. everyday for 3 weeks. The side effects were so bad I had to stop the high dose IV. The next week I had one shot of the interferon and had to stop those also because of vomiting up blood, bad headache and high fever. I had a CT last week and it was clean. Just remember with interferon it only give s you about a 7% that it will work. Some oncologist will tell you 20%, but that is not true if you check out all the information they have on interferon.  But all that said, I wanted to try it because its the best they have to offer for melanoma. My oncologist said some people can take interferon and never know they are taking it, other about die. Check out all the side effects before you start, you may be one of those that can take it without any problems. I just take one day at a time now and thank God for every day He gives me. I think cancer will change all of us for the better or worst, I choose better. So the choice is yours, follow your heart and you will do what is best for you. I have found that drs just don't know how to treat melanoma. I was amazed at how little they know about this cancer. But interferon may work for you, I sure hope it does.

Vickykay Stage 3b

Hi

I am stage 3b, I had 17 lymph nodes removed 6/29/11. I started interferon the 1st of Oct. everyday for 3 weeks. The side effects were so bad I had to stop the high dose IV. The next week I had one shot of the interferon and had to stop those also because of vomiting up blood, bad headache and high fever. I had a CT last week and it was clean. Just remember with interferon it only give s you about a 7% that it will work. Some oncologist will tell you 20%, but that is not true if you check out all the information they have on interferon.  But all that said, I wanted to try it because its the best they have to offer for melanoma. My oncologist said some people can take interferon and never know they are taking it, other about die. Check out all the side effects before you start, you may be one of those that can take it without any problems. I just take one day at a time now and thank God for every day He gives me. I think cancer will change all of us for the better or worst, I choose better. So the choice is yours, follow your heart and you will do what is best for you. I have found that drs just don't know how to treat melanoma. I was amazed at how little they know about this cancer. But interferon may work for you, I sure hope it does.

Vickykay Stage 3b

Hi

I am stage 3b, I had 17 lymph nodes removed 6/29/11. I started interferon the 1st of Oct. everyday for 3 weeks. The side effects were so bad I had to stop the high dose IV. The next week I had one shot of the interferon and had to stop those also because of vomiting up blood, bad headache and high fever. I had a CT last week and it was clean. Just remember with interferon it only give s you about a 7% that it will work. Some oncologist will tell you 20%, but that is not true if you check out all the information they have on interferon.  But all that said, I wanted to try it because its the best they have to offer for melanoma. My oncologist said some people can take interferon and never know they are taking it, other about die. Check out all the side effects before you start, you may be one of those that can take it without any problems. I just take one day at a time now and thank God for every day He gives me. I think cancer will change all of us for the better or worst, I choose better. So the choice is yours, follow your heart and you will do what is best for you. I have found that drs just don't know how to treat melanoma. I was amazed at how little they know about this cancer. But interferon may work for you, I sure hope it does.

Vickykay Stage 3b

Sorry to hear about your diagnosis about 7% of Melanomas are from an Unknown origin in other words the mole may have regressed but a few cells have moved on. You are stage 4 now so Interferon is usually prescribed for Stage 3 patients.  There are some on this Board that have taken Bio Chemo, it usually consists of 3 chemo drugs and IL2 and Interferon.  Your Tumor sample should be tested for any Mutations as there are new drugs that can be targeted towards certain Mutations so you should be ready in the event that it comes back. In the meantime taking the Bio Chemo may or may not halt the Melanoma coming back. Its only my view but Melanoma is an aggressive disease and whilst you are fit and strong i would look into it. 

best wishes

James

Sorry to hear about your diagnosis about 7% of Melanomas are from an Unknown origin in other words the mole may have regressed but a few cells have moved on. You are stage 4 now so Interferon is usually prescribed for Stage 3 patients.  There are some on this Board that have taken Bio Chemo, it usually consists of 3 chemo drugs and IL2 and Interferon.  Your Tumor sample should be tested for any Mutations as there are new drugs that can be targeted towards certain Mutations so you should be ready in the event that it comes back. In the meantime taking the Bio Chemo may or may not halt the Melanoma coming back. Its only my view but Melanoma is an aggressive disease and whilst you are fit and strong i would look into it. 

best wishes

James

Sorry to hear about your diagnosis about 7% of Melanomas are from an Unknown origin in other words the mole may have regressed but a few cells have moved on. You are stage 4 now so Interferon is usually prescribed for Stage 3 patients.  There are some on this Board that have taken Bio Chemo, it usually consists of 3 chemo drugs and IL2 and Interferon.  Your Tumor sample should be tested for any Mutations as there are new drugs that can be targeted towards certain Mutations so you should be ready in the event that it comes back. In the meantime taking the Bio Chemo may or may not halt the Melanoma coming back. Its only my view but Melanoma is an aggressive disease and whilst you are fit and strong i would look into it. 

best wishes

James

Okay, take a deep breath.  Like you, I had an unknown primary that when first detected, was metastatic.  No mole, skin lesion or nothing……….just showed up inside my body.

I've been told over the years that an unknown primary 1)occurs in 2% of the melanoma population  2) may not be unknown (occult) because the primary has not been found 3) Melanoma is one of few cancers known to spontaneously regress and 3 can be mis-diagnosed due to the varieties of melanoma.

MD Anderson is a fine place.  Been there and had a good experience.  However, no matter where you go with an unknown primary it is important to back up to the pathology…………….and question that pathology with a fresh opinion from a derma-path.

Here is why:  There are several forms of melanoma: acral, mucosal, occular, lentigo  and some sub-typ[es.

The treatment approach is different for each one.  So, get the CORRECT pathology first.

Though it IS your choice because it IS your chance as far as treatments go, without a true dermapath report, you would be operating without the benefit of an informed medical decision.

I don't wish to scare you, but you are in deep do-doo ,  though not intractable, your doctors need to give you more information.

I implore you, start with the pathology and  INSIST upon a read from a dermapath, before moving forward……one treatment for melanoma, wrongly applied can ignite melanoma; or it can dampen it……………………start with the path.

Options abound, but it is imperative that you know what you have in order to know ho treat it.

Breathe deep once more.

Cheers,

Charlie S

Okay, take a deep breath.  Like you, I had an unknown primary that when first detected, was metastatic.  No mole, skin lesion or nothing……….just showed up inside my body.

I've been told over the years that an unknown primary 1)occurs in 2% of the melanoma population  2) may not be unknown (occult) because the primary has not been found 3) Melanoma is one of few cancers known to spontaneously regress and 3 can be mis-diagnosed due to the varieties of melanoma.

MD Anderson is a fine place.  Been there and had a good experience.  However, no matter where you go with an unknown primary it is important to back up to the pathology…………….and question that pathology with a fresh opinion from a derma-path.

Here is why:  There are several forms of melanoma: acral, mucosal, occular, lentigo  and some sub-typ[es.

The treatment approach is different for each one.  So, get the CORRECT pathology first.

Though it IS your choice because it IS your chance as far as treatments go, without a true dermapath report, you would be operating without the benefit of an informed medical decision.

I don't wish to scare you, but you are in deep do-doo ,  though not intractable, your doctors need to give you more information.

I implore you, start with the pathology and  INSIST upon a read from a dermapath, before moving forward……one treatment for melanoma, wrongly applied can ignite melanoma; or it can dampen it……………………start with the path.

Options abound, but it is imperative that you know what you have in order to know ho treat it.

Breathe deep once more.

Cheers,

Charlie S

Okay, take a deep breath.  Like you, I had an unknown primary that when first detected, was metastatic.  No mole, skin lesion or nothing……….just showed up inside my body.

I've been told over the years that an unknown primary 1)occurs in 2% of the melanoma population  2) may not be unknown (occult) because the primary has not been found 3) Melanoma is one of few cancers known to spontaneously regress and 3 can be mis-diagnosed due to the varieties of melanoma.

MD Anderson is a fine place.  Been there and had a good experience.  However, no matter where you go with an unknown primary it is important to back up to the pathology…………….and question that pathology with a fresh opinion from a derma-path.

Here is why:  There are several forms of melanoma: acral, mucosal, occular, lentigo  and some sub-typ[es.

The treatment approach is different for each one.  So, get the CORRECT pathology first.

Though it IS your choice because it IS your chance as far as treatments go, without a true dermapath report, you would be operating without the benefit of an informed medical decision.

I don't wish to scare you, but you are in deep do-doo ,  though not intractable, your doctors need to give you more information.

I implore you, start with the pathology and  INSIST upon a read from a dermapath, before moving forward……one treatment for melanoma, wrongly applied can ignite melanoma; or it can dampen it……………………start with the path.

Options abound, but it is imperative that you know what you have in order to know ho treat it.

Breathe deep once more.

Cheers,

Charlie S

Charlie is so correct.  You need more information to have an idea which way to go.  One of my first items on an unknown primary (possibly a colon or intestinal primary) would be to get a c-kit oncoprotein test run on the tumor material by a local lab.  Should be available at any local lab.  Insurance should over it.  The cost is usually around $125.00.  If the removed tumor contains c-kit there are several cancer targeted chemo drugs that have been FDA approved for GIST, CML, and leukemia that can be used off-label.  They are currently under clinical trials for various c-kit DNA mutations.  Gleevec is one that seems to be most effective against exon 11 C-kit DNA-mutations.  I have been on it for almost 3 years now for c-kit anal mucosal melanoma. 

 If the c-kit oncoprotein test is positive then a specialist lab should run the c-kit DNA mutation test.  If both test are positive you will have a good idea of one treatment path to follow if the melanoma were to return.

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045%2809%2970036-1/abstract

Melanoma of the small intestine

Intestinal melanomas can be primary tumours or metastases of cutaneous, ocular, or anal melanomas. Primary intestinal melanoma is extremely rare, whereas metastatic melanoma of the small bowel is common because of the tendency for cutaneous melanoma to metastasise to the gastrointestinal tract. Because distinguishing between primary and metastatic intestinal melanoma can be difficult, the main features of each are discussed, and the diagnostic images used to detect intestinal melanoma are assessed. Routine barium examinations and CT have limited sensitivity, but PET imaging can improve detection of melanoma metastases to the small bowel. Although various treatment strategies have been tried in patients with intestinal melanoma, surgical removal of intestinal metastases is the treatment of choice in patients with resectable tumours.

********************

Also of interest is: http://findarticles.com/p/articles/mi_7453/is_200804/ai_n32268337/

***************************

If the initil c-kit test is ngative, then I would be interested in getting  BRAF tst on tumor tissue.

Charlie is so correct.  You need more information to have an idea which way to go.  One of my first items on an unknown primary (possibly a colon or intestinal primary) would be to get a c-kit oncoprotein test run on the tumor material by a local lab.  Should be available at any local lab.  Insurance should over it.  The cost is usually around $125.00.  If the removed tumor contains c-kit there are several cancer targeted chemo drugs that have been FDA approved for GIST, CML, and leukemia that can be used off-label.  They are currently under clinical trials for various c-kit DNA mutations.  Gleevec is one that seems to be most effective against exon 11 C-kit DNA-mutations.  I have been on it for almost 3 years now for c-kit anal mucosal melanoma. 

 If the c-kit oncoprotein test is positive then a specialist lab should run the c-kit DNA mutation test.  If both test are positive you will have a good idea of one treatment path to follow if the melanoma were to return.

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045%2809%2970036-1/abstract

Melanoma of the small intestine

Intestinal melanomas can be primary tumours or metastases of cutaneous, ocular, or anal melanomas. Primary intestinal melanoma is extremely rare, whereas metastatic melanoma of the small bowel is common because of the tendency for cutaneous melanoma to metastasise to the gastrointestinal tract. Because distinguishing between primary and metastatic intestinal melanoma can be difficult, the main features of each are discussed, and the diagnostic images used to detect intestinal melanoma are assessed. Routine barium examinations and CT have limited sensitivity, but PET imaging can improve detection of melanoma metastases to the small bowel. Although various treatment strategies have been tried in patients with intestinal melanoma, surgical removal of intestinal metastases is the treatment of choice in patients with resectable tumours.

********************

Also of interest is: http://findarticles.com/p/articles/mi_7453/is_200804/ai_n32268337/

***************************

If the initil c-kit test is ngative, then I would be interested in getting  BRAF tst on tumor tissue.

Charlie is so correct.  You need more information to have an idea which way to go.  One of my first items on an unknown primary (possibly a colon or intestinal primary) would be to get a c-kit oncoprotein test run on the tumor material by a local lab.  Should be available at any local lab.  Insurance should over it.  The cost is usually around $125.00.  If the removed tumor contains c-kit there are several cancer targeted chemo drugs that have been FDA approved for GIST, CML, and leukemia that can be used off-label.  They are currently under clinical trials for various c-kit DNA mutations.  Gleevec is one that seems to be most effective against exon 11 C-kit DNA-mutations.  I have been on it for almost 3 years now for c-kit anal mucosal melanoma. 

 If the c-kit oncoprotein test is positive then a specialist lab should run the c-kit DNA mutation test.  If both test are positive you will have a good idea of one treatment path to follow if the melanoma were to return.

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045%2809%2970036-1/abstract

Melanoma of the small intestine

Intestinal melanomas can be primary tumours or metastases of cutaneous, ocular, or anal melanomas. Primary intestinal melanoma is extremely rare, whereas metastatic melanoma of the small bowel is common because of the tendency for cutaneous melanoma to metastasise to the gastrointestinal tract. Because distinguishing between primary and metastatic intestinal melanoma can be difficult, the main features of each are discussed, and the diagnostic images used to detect intestinal melanoma are assessed. Routine barium examinations and CT have limited sensitivity, but PET imaging can improve detection of melanoma metastases to the small bowel. Although various treatment strategies have been tried in patients with intestinal melanoma, surgical removal of intestinal metastases is the treatment of choice in patients with resectable tumours.

********************

Also of interest is: http://findarticles.com/p/articles/mi_7453/is_200804/ai_n32268337/

***************************

If the initil c-kit test is ngative, then I would be interested in getting  BRAF tst on tumor tissue.

I was diagnosed with melanoma after having a large lymph node removed from under my arm. I also have an unknown primary but since I had MANY sun burns in my younger days my docs think it began on my shoulder or arm. I decided to join a clinical trial and was assigned the bio-chemotherapy arm (Interferon was the other arm). 

I had a complete axillary lymph node dissection and then 3 rounds of bio-chemo. My treatment included IL2, interferon, dicarbazine, vinblastin and cisplatin. The treatment was pretty rough…lots of side affects…but was do-able. That was over 5 years ago…..I am one of the lucky ones…I remain NED without any reoccurrence. I can't say that I would be NED without the treatment or that I would be…..that's life with melanoma. You've  already been given some good advice from the others….so my advice is to do the research pick a treatment plan that works for you and go forward without looking in the rearview mirror.

Please don't hesitate to contact me if you have any specific bio-chemo questions.

All my best!

Kevin

I was diagnosed with melanoma after having a large lymph node removed from under my arm. I also have an unknown primary but since I had MANY sun burns in my younger days my docs think it began on my shoulder or arm. I decided to join a clinical trial and was assigned the bio-chemotherapy arm (Interferon was the other arm). 

I had a complete axillary lymph node dissection and then 3 rounds of bio-chemo. My treatment included IL2, interferon, dicarbazine, vinblastin and cisplatin. The treatment was pretty rough…lots of side affects…but was do-able. That was over 5 years ago…..I am one of the lucky ones…I remain NED without any reoccurrence. I can't say that I would be NED without the treatment or that I would be…..that's life with melanoma. You've  already been given some good advice from the others….so my advice is to do the research pick a treatment plan that works for you and go forward without looking in the rearview mirror.

Please don't hesitate to contact me if you have any specific bio-chemo questions.

All my best!

Kevin

I was diagnosed with melanoma after having a large lymph node removed from under my arm. I also have an unknown primary but since I had MANY sun burns in my younger days my docs think it began on my shoulder or arm. I decided to join a clinical trial and was assigned the bio-chemotherapy arm (Interferon was the other arm). 

I had a complete axillary lymph node dissection and then 3 rounds of bio-chemo. My treatment included IL2, interferon, dicarbazine, vinblastin and cisplatin. The treatment was pretty rough…lots of side affects…but was do-able. That was over 5 years ago…..I am one of the lucky ones…I remain NED without any reoccurrence. I can't say that I would be NED without the treatment or that I would be…..that's life with melanoma. You've  already been given some good advice from the others….so my advice is to do the research pick a treatment plan that works for you and go forward without looking in the rearview mirror.

Please don't hesitate to contact me if you have any specific bio-chemo questions.

All my best!

Kevin

I did preventive biochemo in 2003 at the University of Colorado Cancer Center after a Stage IIIc diagnosis (14 malignant nodes), and have never experienced a recurrence.  It is indeed very rough stuff, but it's very doable for an otherwise healthy person (I was 50 at the time).  I was pretty heavily sedated during the inpatient infusion days, so that time passed pretty quickly.  The first 7-10 days out of the hospital were pretty rough with flu-like symptoms, but I felt better day by day and enjoyed several days of feeling pretty normal, although very tired, between rounds.  After the fourth and final round, I pretty rapidly recovered but it took some time and effort to regain physical strength because I'd lost a lot of weight during treatment.

Best wishes to you.  Rich

http://www.hotelmelanoma.blogspot.com

I did preventive biochemo in 2003 at the University of Colorado Cancer Center after a Stage IIIc diagnosis (14 malignant nodes), and have never experienced a recurrence.  It is indeed very rough stuff, but it's very doable for an otherwise healthy person (I was 50 at the time).  I was pretty heavily sedated during the inpatient infusion days, so that time passed pretty quickly.  The first 7-10 days out of the hospital were pretty rough with flu-like symptoms, but I felt better day by day and enjoyed several days of feeling pretty normal, although very tired, between rounds.  After the fourth and final round, I pretty rapidly recovered but it took some time and effort to regain physical strength because I'd lost a lot of weight during treatment.

Best wishes to you.  Rich

http://www.hotelmelanoma.blogspot.com

I did preventive biochemo in 2003 at the University of Colorado Cancer Center after a Stage IIIc diagnosis (14 malignant nodes), and have never experienced a recurrence.  It is indeed very rough stuff, but it's very doable for an otherwise healthy person (I was 50 at the time).  I was pretty heavily sedated during the inpatient infusion days, so that time passed pretty quickly.  The first 7-10 days out of the hospital were pretty rough with flu-like symptoms, but I felt better day by day and enjoyed several days of feeling pretty normal, although very tired, between rounds.  After the fourth and final round, I pretty rapidly recovered but it took some time and effort to regain physical strength because I'd lost a lot of weight during treatment.

Best wishes to you.  Rich

http://www.hotelmelanoma.blogspot.com

My friend Linda had melanoma in her intestines…never showed up on any scan…she had pain and they did surgery…-

…cancer was wide spread

-resected all of ascending and transverse colons…that is 2/3 of large intestines

-procedure called a right hemicolectomy & bowel resection

-tumor size of large grapefruit…some tumor still inside…unresectable 

She was told and I was also told when it's in the intestines they need to go in there and look with a camera and that PET/CT and MRI'S will not show it.

She is on anti pd 1 and peptide trial and doing awesomely well now.

My friend Linda had melanoma in her intestines…never showed up on any scan…she had pain and they did surgery…-

…cancer was wide spread

-resected all of ascending and transverse colons…that is 2/3 of large intestines

-procedure called a right hemicolectomy & bowel resection

-tumor size of large grapefruit…some tumor still inside…unresectable 

She was told and I was also told when it's in the intestines they need to go in there and look with a camera and that PET/CT and MRI'S will not show it.

She is on anti pd 1 and peptide trial and doing awesomely well now.

My friend Linda had melanoma in her intestines…never showed up on any scan…she had pain and they did surgery…-

…cancer was wide spread

-resected all of ascending and transverse colons…that is 2/3 of large intestines

-procedure called a right hemicolectomy & bowel resection

-tumor size of large grapefruit…some tumor still inside…unresectable 

She was told and I was also told when it's in the intestines they need to go in there and look with a camera and that PET/CT and MRI'S will not show it.

She is on anti pd 1 and peptide trial and doing awesomely well now.