Stage 3B with +Lymph nodes, surgery done, what now?

Hello Terra,  regret the bad news, melanoma is a beast.

My husband is from may 2012 stage 3A. My husband had at that time 38 years old. At that time the options for stage 3A were watch and wait or pegylated interferon  for 2 years. My husband opted to try the pegylated interferon , is a very personal desicion . God willing in October 2014 would be the two years ending with pegylated interferom . Despite a trouble to have this damn disease , my husband has a normal life working full time . The side effects of pegylated interferon is depends on the person.

You can visit my post about the side effects of pegylated interferon having my husband :

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/experience-pegylated

I did not know that IPI is used to stage 3, I had understood that it was only for stage 4 .

Her anxiety is normal , I assure you that in time the anxiety will decrease . We are very nervous every 6 months when my husband should do the CT or PET of control.

You can ask me whatever you want.

Best wishes.

gaby (from Argentina )

Hi Gaby,

just to clarify, the ipi vs interferon trial was not available for stage 3A, only 3B or 3C. 

Thandster

Hi Gaby,

just to clarify, the ipi vs interferon trial was not available for stage 3A, only 3B or 3C. 

Thandster

Hi Gaby,

just to clarify, the ipi vs interferon trial was not available for stage 3A, only 3B or 3C. 

Thandster

Hello Terra,  regret the bad news, melanoma is a beast.

My husband is from may 2012 stage 3A. My husband had at that time 38 years old. At that time the options for stage 3A were watch and wait or pegylated interferon  for 2 years. My husband opted to try the pegylated interferon , is a very personal desicion . God willing in October 2014 would be the two years ending with pegylated interferom . Despite a trouble to have this damn disease , my husband has a normal life working full time . The side effects of pegylated interferon is depends on the person.

You can visit my post about the side effects of pegylated interferon having my husband :

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/experience-pegylated

I did not know that IPI is used to stage 3, I had understood that it was only for stage 4 .

Her anxiety is normal , I assure you that in time the anxiety will decrease . We are very nervous every 6 months when my husband should do the CT or PET of control.

You can ask me whatever you want.

Best wishes.

gaby (from Argentina )

Hello Terra,  regret the bad news, melanoma is a beast.

My husband is from may 2012 stage 3A. My husband had at that time 38 years old. At that time the options for stage 3A were watch and wait or pegylated interferon  for 2 years. My husband opted to try the pegylated interferon , is a very personal desicion . God willing in October 2014 would be the two years ending with pegylated interferom . Despite a trouble to have this damn disease , my husband has a normal life working full time . The side effects of pegylated interferon is depends on the person.

You can visit my post about the side effects of pegylated interferon having my husband :

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/experience-pegylated

I did not know that IPI is used to stage 3, I had understood that it was only for stage 4 .

Her anxiety is normal , I assure you that in time the anxiety will decrease . We are very nervous every 6 months when my husband should do the CT or PET of control.

You can ask me whatever you want.

Best wishes.

gaby (from Argentina )

I had a 2 cm x 1.9 cm x 1.5 cm metastic melanoma tumor on my left parotid gland.  My surgery, parotidectomy and radical dissection of the lymph glands on the left side of my neck, was June 6th, 25 years after my father was diagnosed with metastic melanoma.  (He died 7 1/2 months later, right after his 81st birthday.)  My daughter convinced me to enter the trial.  I was randomized into arm C.  My first (3 mg/Kg body mass) infusion was July 30, 2013.  My second infusion was August 20th. September 10th there was no (3rd) infusion because I had diarrhea.  The following week I had a colonoscopy and I was told I had ipi induced colitis.  In October 2013, I spent 24 days in the hospital.  I had inflammatory ulcerative colitis.  While in the hosptial, I received 9 units of blood, two infusions of infleximab (Remicade), and massive doses of prednisone.  I recently had an ACTH test to see if my adrenal glands have recovered from the "prednisone shock."  I am following the colitis diet.  I have to exercise to restore my strength, especially in my legs. Never the less. I AM GLAD THAT I'M IN THE CLINICAL TRIAL.  I will be 72 this Sunday.  Was my irAE, immune related Adverse Event, a function of my age?  I don't know.  Ironically, the resident assigned to me during my hospital stay in the intermediate care unit had surgery for melanoma while he was a medical student.  He was on interferon and had to leave medical school for a year.  Join the trial ASAP.  If you aren't in the trial, you'd be on interferon anyway.  Most reactions to ipilimamub, especially 3 mg, are not as extreme as mine.  Contact your oncologist as soon as something happens.  Go over the "what ifs" with the clinical research coordinator nurse.  Do not be shy about calling the oncology fellow on call if you have to speak to someone at night.  Good luck!

I had a 2 cm x 1.9 cm x 1.5 cm metastic melanoma tumor on my left parotid gland.  My surgery, parotidectomy and radical dissection of the lymph glands on the left side of my neck, was June 6th, 25 years after my father was diagnosed with metastic melanoma.  (He died 7 1/2 months later, right after his 81st birthday.)  My daughter convinced me to enter the trial.  I was randomized into arm C.  My first (3 mg/Kg body mass) infusion was July 30, 2013.  My second infusion was August 20th. September 10th there was no (3rd) infusion because I had diarrhea.  The following week I had a colonoscopy and I was told I had ipi induced colitis.  In October 2013, I spent 24 days in the hospital.  I had inflammatory ulcerative colitis.  While in the hosptial, I received 9 units of blood, two infusions of infleximab (Remicade), and massive doses of prednisone.  I recently had an ACTH test to see if my adrenal glands have recovered from the "prednisone shock."  I am following the colitis diet.  I have to exercise to restore my strength, especially in my legs. Never the less. I AM GLAD THAT I'M IN THE CLINICAL TRIAL.  I will be 72 this Sunday.  Was my irAE, immune related Adverse Event, a function of my age?  I don't know.  Ironically, the resident assigned to me during my hospital stay in the intermediate care unit had surgery for melanoma while he was a medical student.  He was on interferon and had to leave medical school for a year.  Join the trial ASAP.  If you aren't in the trial, you'd be on interferon anyway.  Most reactions to ipilimamub, especially 3 mg, are not as extreme as mine.  Contact your oncologist as soon as something happens.  Go over the "what ifs" with the clinical research coordinator nurse.  Do not be shy about calling the oncology fellow on call if you have to speak to someone at night.  Good luck!

I had a 2 cm x 1.9 cm x 1.5 cm metastic melanoma tumor on my left parotid gland.  My surgery, parotidectomy and radical dissection of the lymph glands on the left side of my neck, was June 6th, 25 years after my father was diagnosed with metastic melanoma.  (He died 7 1/2 months later, right after his 81st birthday.)  My daughter convinced me to enter the trial.  I was randomized into arm C.  My first (3 mg/Kg body mass) infusion was July 30, 2013.  My second infusion was August 20th. September 10th there was no (3rd) infusion because I had diarrhea.  The following week I had a colonoscopy and I was told I had ipi induced colitis.  In October 2013, I spent 24 days in the hospital.  I had inflammatory ulcerative colitis.  While in the hosptial, I received 9 units of blood, two infusions of infleximab (Remicade), and massive doses of prednisone.  I recently had an ACTH test to see if my adrenal glands have recovered from the "prednisone shock."  I am following the colitis diet.  I have to exercise to restore my strength, especially in my legs. Never the less. I AM GLAD THAT I'M IN THE CLINICAL TRIAL.  I will be 72 this Sunday.  Was my irAE, immune related Adverse Event, a function of my age?  I don't know.  Ironically, the resident assigned to me during my hospital stay in the intermediate care unit had surgery for melanoma while he was a medical student.  He was on interferon and had to leave medical school for a year.  Join the trial ASAP.  If you aren't in the trial, you'd be on interferon anyway.  Most reactions to ipilimamub, especially 3 mg, are not as extreme as mine.  Contact your oncologist as soon as something happens.  Go over the "what ifs" with the clinical research coordinator nurse.  Do not be shy about calling the oncology fellow on call if you have to speak to someone at night.  Good luck!

link got cut off

http://www.primeoncology.org/online_education/solid_tumor/2012/parismelanoma2012_webcast/session_6/weber.aspx

still not working.

try this

http://Update on ipilimumab in the adjuvant setting – prIME Oncology

still not working.

try this

http://Update on ipilimumab in the adjuvant setting – prIME Oncology

still not working.

try this

http://Update on ipilimumab in the adjuvant setting – prIME Oncology

link got cut off

http://www.primeoncology.org/online_education/solid_tumor/2012/parismelanoma2012_webcast/session_6/weber.aspx

link got cut off

http://www.primeoncology.org/online_education/solid_tumor/2012/parismelanoma2012_webcast/session_6/weber.aspx

I certainly understand your concern with there being 8 deaths in the high dose arm (when my husband signed his initial consent there had been 3 and that gave us pause).  Is your oncologist a melanoma specialist?  I ask because the more familiar the doctors are with using Ipi the quicker they are to jump on side effects.  My husband has had significant side effects but he has been able to continue working full time (with some time off for surgergy/ infusions/appointments etc) and all his side effects have basically been reversible. This trial is being run in many many locations.  Some of the trial doctors have less experience than others in managing side effects (and without proper management Ipi side effects are very dangerous). It is absolutely crucial, if you decide to take Ipi, that you are aware of all potential side effects and report them immediately!

Another way to perhaps look at the 10mg/kg dose arm:  They stopped the accural in that arm for several months while they reviewed the data and then they decided to restart……  It might be interpretted to mean that the very preliminary data from the study (there are NO official results) are very promising?????

There are a couple of adjuvant trials for people who are Braf + (Braf alone vs placebo) and (Braf + MEK vs. placebo) so it isn't quite true that there is no reason to test tumors in Stage III

Kate

Terra,

It seems likely your oncologist has experience giving Ipi.  I would just make sure you know the plan for communicating any and all side effects.  If you are randomized into an Ipi arm, continue to familiarize yourself with the side effects and how they can present.

We had decided against the Braf vs placebo trial even before his results came back (he is negative) because of the placebo aspect of the trials.

You might also wish to watch the Aim presentation that JerryfromFauq linked  (see TIL/ACT post).  The presentation also includes a despcription by a patient who is doing Interferon (as part of the same trial) and a guy who did Ipi (for Stage IV).

Once you make up your mind just move forward.  My husband and I have no regrets. Despite having to stop the Ipi due to side effects, he's glad to have had the opportunity to receive it.  Also, 7 months since his last dose he is still having some side effects (rash and itching) which remind him his immune system is still "revved up."

When do you see your doctor?

Best,

Kate

How did your appointment go?

Kate

Update (perhaps with a new topic so it isn't lost)  when you are randomized etc. best of luck. Eventually, you will settle into a "new normal"

Kate

Update (perhaps with a new topic so it isn't lost)  when you are randomized etc. best of luck. Eventually, you will settle into a "new normal"

Kate

Update (perhaps with a new topic so it isn't lost)  when you are randomized etc. best of luck. Eventually, you will settle into a "new normal"

Kate

How did your appointment go?

Kate

How did your appointment go?

Kate

Terra,

It seems likely your oncologist has experience giving Ipi.  I would just make sure you know the plan for communicating any and all side effects.  If you are randomized into an Ipi arm, continue to familiarize yourself with the side effects and how they can present.

We had decided against the Braf vs placebo trial even before his results came back (he is negative) because of the placebo aspect of the trials.

You might also wish to watch the Aim presentation that JerryfromFauq linked  (see TIL/ACT post).  The presentation also includes a despcription by a patient who is doing Interferon (as part of the same trial) and a guy who did Ipi (for Stage IV).

Once you make up your mind just move forward.  My husband and I have no regrets. Despite having to stop the Ipi due to side effects, he's glad to have had the opportunity to receive it.  Also, 7 months since his last dose he is still having some side effects (rash and itching) which remind him his immune system is still "revved up."

When do you see your doctor?

Best,

Kate

Terra,

It seems likely your oncologist has experience giving Ipi.  I would just make sure you know the plan for communicating any and all side effects.  If you are randomized into an Ipi arm, continue to familiarize yourself with the side effects and how they can present.

We had decided against the Braf vs placebo trial even before his results came back (he is negative) because of the placebo aspect of the trials.

You might also wish to watch the Aim presentation that JerryfromFauq linked  (see TIL/ACT post).  The presentation also includes a despcription by a patient who is doing Interferon (as part of the same trial) and a guy who did Ipi (for Stage IV).

Once you make up your mind just move forward.  My husband and I have no regrets. Despite having to stop the Ipi due to side effects, he's glad to have had the opportunity to receive it.  Also, 7 months since his last dose he is still having some side effects (rash and itching) which remind him his immune system is still "revved up."

When do you see your doctor?

Best,

Kate

I certainly understand your concern with there being 8 deaths in the high dose arm (when my husband signed his initial consent there had been 3 and that gave us pause).  Is your oncologist a melanoma specialist?  I ask because the more familiar the doctors are with using Ipi the quicker they are to jump on side effects.  My husband has had significant side effects but he has been able to continue working full time (with some time off for surgergy/ infusions/appointments etc) and all his side effects have basically been reversible. This trial is being run in many many locations.  Some of the trial doctors have less experience than others in managing side effects (and without proper management Ipi side effects are very dangerous). It is absolutely crucial, if you decide to take Ipi, that you are aware of all potential side effects and report them immediately!

Another way to perhaps look at the 10mg/kg dose arm:  They stopped the accural in that arm for several months while they reviewed the data and then they decided to restart……  It might be interpretted to mean that the very preliminary data from the study (there are NO official results) are very promising?????

There are a couple of adjuvant trials for people who are Braf + (Braf alone vs placebo) and (Braf + MEK vs. placebo) so it isn't quite true that there is no reason to test tumors in Stage III

Kate

I certainly understand your concern with there being 8 deaths in the high dose arm (when my husband signed his initial consent there had been 3 and that gave us pause).  Is your oncologist a melanoma specialist?  I ask because the more familiar the doctors are with using Ipi the quicker they are to jump on side effects.  My husband has had significant side effects but he has been able to continue working full time (with some time off for surgergy/ infusions/appointments etc) and all his side effects have basically been reversible. This trial is being run in many many locations.  Some of the trial doctors have less experience than others in managing side effects (and without proper management Ipi side effects are very dangerous). It is absolutely crucial, if you decide to take Ipi, that you are aware of all potential side effects and report them immediately!

Another way to perhaps look at the 10mg/kg dose arm:  They stopped the accural in that arm for several months while they reviewed the data and then they decided to restart……  It might be interpretted to mean that the very preliminary data from the study (there are NO official results) are very promising?????

There are a couple of adjuvant trials for people who are Braf + (Braf alone vs placebo) and (Braf + MEK vs. placebo) so it isn't quite true that there is no reason to test tumors in Stage III

Kate

Yes  it was the only medication he was on at the time other than the GMCSF.

Yes  it was the only medication he was on at the time other than the GMCSF.

Yes  it was the only medication he was on at the time other than the GMCSF.

My husband just finished his 4th infusion of 10mg ipi. Side effects were manageable. Benadryl took care of the itching and figuring out what foods got his GI symptoms going along with occasional immodium. No real fatigue issues. I was terrified when he started but I am glad he did. He. Was stage 3c .labs have been all normal. His maintenance dose starts in June . Good luck

My husband just finished his 4th infusion of 10mg ipi. Side effects were manageable. Benadryl took care of the itching and figuring out what foods got his GI symptoms going along with occasional immodium. No real fatigue issues. I was terrified when he started but I am glad he did. He. Was stage 3c .labs have been all normal. His maintenance dose starts in June . Good luck

My husband just finished his 4th infusion of 10mg ipi. Side effects were manageable. Benadryl took care of the itching and figuring out what foods got his GI symptoms going along with occasional immodium. No real fatigue issues. I was terrified when he started but I am glad he did. He. Was stage 3c .labs have been all normal. His maintenance dose starts in June . Good luck

Wilmot isn't listed on this site as a melanoma treatment center but it is listed as a treatment center on Melanoma International's site.

You just need to make sure that your doctor specializes in melanoma and is not a general oncologist or general dermatologist. Melanoma specialists look at this stuff on a daily basis so they probably will not overlook something that a generalist might overlook.

Melanoma isn't called "the Beast" for nothing. For one, it doesn't respond to conventional chemotherapy. This is why a generalist is not your best option. Doctors must use immunotherapy to treat melanoma. The world of melanoma treatment has made HUGE strides just since 2011. Only a doctor who specializes in it can keep up with that kind of pace and provide you with information on the latest options for treatment.

Breast cancer patients was a breast cancer specialist, prostate cancer patients want a prostate cancer specialist, is melanoma more so than other cancers in terms of having a specialist? 

Breast cancer patients was a breast cancer specialist, prostate cancer patients want a prostate cancer specialist, is melanoma more so than other cancers in terms of having a specialist? 

Breast cancer patients was a breast cancer specialist, prostate cancer patients want a prostate cancer specialist, is melanoma more so than other cancers in terms of having a specialist? 

If he's sitting on a team that meets regularly to discuss melanoma treatments for patients, then it sounds like you're in good hands.

Go with your gut. If you're comfortable with the guy, then stick with him.

If he's sitting on a team that meets regularly to discuss melanoma treatments for patients, then it sounds like you're in good hands.

Go with your gut. If you're comfortable with the guy, then stick with him.

If he's sitting on a team that meets regularly to discuss melanoma treatments for patients, then it sounds like you're in good hands.

Go with your gut. If you're comfortable with the guy, then stick with him.

Hi Terra,

Bottom line is if you are comfortable at Wilmot and prefer not to make any changes, then do what you believe is best.  Just as with interferon, there's no right or wrong.  Sorry if my comments resulted in added stress.  Be your own advocate, ask lots of questions and get yourself treated at the place in which you are most comfortable.

Hi Terra,

Bottom line is if you are comfortable at Wilmot and prefer not to make any changes, then do what you believe is best.  Just as with interferon, there's no right or wrong.  Sorry if my comments resulted in added stress.  Be your own advocate, ask lots of questions and get yourself treated at the place in which you are most comfortable.

Hi Terra,

Bottom line is if you are comfortable at Wilmot and prefer not to make any changes, then do what you believe is best.  Just as with interferon, there's no right or wrong.  Sorry if my comments resulted in added stress.  Be your own advocate, ask lots of questions and get yourself treated at the place in which you are most comfortable.

Wilmot isn't listed on this site as a melanoma treatment center but it is listed as a treatment center on Melanoma International's site.

You just need to make sure that your doctor specializes in melanoma and is not a general oncologist or general dermatologist. Melanoma specialists look at this stuff on a daily basis so they probably will not overlook something that a generalist might overlook.

Melanoma isn't called "the Beast" for nothing. For one, it doesn't respond to conventional chemotherapy. This is why a generalist is not your best option. Doctors must use immunotherapy to treat melanoma. The world of melanoma treatment has made HUGE strides just since 2011. Only a doctor who specializes in it can keep up with that kind of pace and provide you with information on the latest options for treatment.

Wilmot isn't listed on this site as a melanoma treatment center but it is listed as a treatment center on Melanoma International's site.

You just need to make sure that your doctor specializes in melanoma and is not a general oncologist or general dermatologist. Melanoma specialists look at this stuff on a daily basis so they probably will not overlook something that a generalist might overlook.

Melanoma isn't called "the Beast" for nothing. For one, it doesn't respond to conventional chemotherapy. This is why a generalist is not your best option. Doctors must use immunotherapy to treat melanoma. The world of melanoma treatment has made HUGE strides just since 2011. Only a doctor who specializes in it can keep up with that kind of pace and provide you with information on the latest options for treatment.

My husband who is ib the 10 mg ipi arm is being treated at a kaiser hospital in California. He is getting excellent care. The protocol is very strict so you will get carefully observed. Stay close to home if you can. If you get in the interferon arm you may want to reconsider. I think ipi is going to be approved for stage3 soon so why put up with interferon?good luck and join the trial!

My husband who is ib the 10 mg ipi arm is being treated at a kaiser hospital in California. He is getting excellent care. The protocol is very strict so you will get carefully observed. Stay close to home if you can. If you get in the interferon arm you may want to reconsider. I think ipi is going to be approved for stage3 soon so why put up with interferon?good luck and join the trial!

My husband who is ib the 10 mg ipi arm is being treated at a kaiser hospital in California. He is getting excellent care. The protocol is very strict so you will get carefully observed. Stay close to home if you can. If you get in the interferon arm you may want to reconsider. I think ipi is going to be approved for stage3 soon so why put up with interferon?good luck and join the trial!

i'm sorry i meant…according to his doctor his 2 treamtments are now equivilant to 4 of the new dose. Who knows if his melanoma has been kept away from these treatments or if it just wouldn't have come back regardless. Thats what makes it so hard to decide.

i'm sorry i meant…according to his doctor his 2 treamtments are now equivilant to 4 of the new dose. Who knows if his melanoma has been kept away from these treatments or if it just wouldn't have come back regardless. Thats what makes it so hard to decide.

i'm sorry i meant…according to his doctor his 2 treamtments are now equivilant to 4 of the new dose. Who knows if his melanoma has been kept away from these treatments or if it just wouldn't have come back regardless. Thats what makes it so hard to decide.