Devastating scan results – need advice for discussion with Dr tomorrow

I am not a specialist so can’t give you as much advice as a specialist could. It would be worth getting several opinions if you feel you have time. My Dad has had 4 melanomas though (luckily all stage I so far) and I can never get him to search more widely for opinions. That would be my first bit of “advice” ….you may need to let him take the lead. If he doesn’t want to visit other specialists, it may be his way of seeking some control in an awful situation. If he’s willing to look, I’m sure others with good oncs for stage IV will suggest some.

Of the ones you mentioned, yervoy is the same as ipi / ipilimumab….so that’s one class of treatments. It’s an immune system stimulant in general. I’m not sure if you need to be disease-free before starting it? The vemurafenib is what’s called a B-RAF inhibitor, meaning it stops a particular marker on certain melanomas. Your Dad’s tumors would need to be tested to see if they have that marker. Other immune system stimulants are GM-CSF but that is usually for resected stage III in my understsnding.

IL-2 is a pretty brutal treatment. You don’t mention how old your Dad is but it’s possible they may not consider him physically strong enough for that. It would be a question to ask.

I’m sorry you’re going through this (and your Dad). For what it’s worth, these mets may have been there all along, since he already had groin metastases when diagnosed. I do agree your onc should have had a whole body PET scan done immediately after the first resection (it sounds like they didn’t bother staging him properly in the first place….just-as you say- focussed on the foot without thinking of looking more broadly) but if there’s any upside to that, it could mean that these aren’t “sudden” and fast growing new mets that have all just popped up. It’s no less awful that they’re there but it may not mean 40 new tumors just appeared….they may have been there for a bit. It’s good that he has your support…

I wish there was more I/we could do…..

Thinking of you

AlisonC
Stage IIIB
NED since 2001

I am not a specialist so can’t give you as much advice as a specialist could. It would be worth getting several opinions if you feel you have time. My Dad has had 4 melanomas though (luckily all stage I so far) and I can never get him to search more widely for opinions. That would be my first bit of “advice” ….you may need to let him take the lead. If he doesn’t want to visit other specialists, it may be his way of seeking some control in an awful situation. If he’s willing to look, I’m sure others with good oncs for stage IV will suggest some.

Of the ones you mentioned, yervoy is the same as ipi / ipilimumab….so that’s one class of treatments. It’s an immune system stimulant in general. I’m not sure if you need to be disease-free before starting it? The vemurafenib is what’s called a B-RAF inhibitor, meaning it stops a particular marker on certain melanomas. Your Dad’s tumors would need to be tested to see if they have that marker. Other immune system stimulants are GM-CSF but that is usually for resected stage III in my understsnding.

IL-2 is a pretty brutal treatment. You don’t mention how old your Dad is but it’s possible they may not consider him physically strong enough for that. It would be a question to ask.

I’m sorry you’re going through this (and your Dad). For what it’s worth, these mets may have been there all along, since he already had groin metastases when diagnosed. I do agree your onc should have had a whole body PET scan done immediately after the first resection (it sounds like they didn’t bother staging him properly in the first place….just-as you say- focussed on the foot without thinking of looking more broadly) but if there’s any upside to that, it could mean that these aren’t “sudden” and fast growing new mets that have all just popped up. It’s no less awful that they’re there but it may not mean 40 new tumors just appeared….they may have been there for a bit. It’s good that he has your support…

I wish there was more I/we could do…..

Thinking of you

AlisonC
Stage IIIB
NED since 2001

I am not a specialist so can’t give you as much advice as a specialist could. It would be worth getting several opinions if you feel you have time. My Dad has had 4 melanomas though (luckily all stage I so far) and I can never get him to search more widely for opinions. That would be my first bit of “advice” ….you may need to let him take the lead. If he doesn’t want to visit other specialists, it may be his way of seeking some control in an awful situation. If he’s willing to look, I’m sure others with good oncs for stage IV will suggest some.

Of the ones you mentioned, yervoy is the same as ipi / ipilimumab….so that’s one class of treatments. It’s an immune system stimulant in general. I’m not sure if you need to be disease-free before starting it? The vemurafenib is what’s called a B-RAF inhibitor, meaning it stops a particular marker on certain melanomas. Your Dad’s tumors would need to be tested to see if they have that marker. Other immune system stimulants are GM-CSF but that is usually for resected stage III in my understsnding.

IL-2 is a pretty brutal treatment. You don’t mention how old your Dad is but it’s possible they may not consider him physically strong enough for that. It would be a question to ask.

I’m sorry you’re going through this (and your Dad). For what it’s worth, these mets may have been there all along, since he already had groin metastases when diagnosed. I do agree your onc should have had a whole body PET scan done immediately after the first resection (it sounds like they didn’t bother staging him properly in the first place….just-as you say- focussed on the foot without thinking of looking more broadly) but if there’s any upside to that, it could mean that these aren’t “sudden” and fast growing new mets that have all just popped up. It’s no less awful that they’re there but it may not mean 40 new tumors just appeared….they may have been there for a bit. It’s good that he has your support…

I wish there was more I/we could do…..

Thinking of you

AlisonC
Stage IIIB
NED since 2001

Trisha,

Your overwhelmed. To me it's obviously that your dad needs a second opinion.   There is a different diagnosis with an mri then a PET/CT.  The pet does not give the idea of what is going on in the brain.

Some of the drugs your mentioning are the same thing….. for example Yervoy and Ippi. Now that's it's fda approved the name has changed.   Your dad has to have a tumor tested to see if he has a particular mutation.  Being on the bottom of the foot could possible be c-kit.   There is so much new info out there that specialists have other options.  Right now there are new trials being opened with PD1 trials. 

You now can't worry about backwards and what has happened, now it's time to get your dad's options.   Let us know where your dad is located and the first decision is to get to a melanoma specialist.  Different hospitals offer different trials.  

Decisions can be discussed but it shouldn't  start tomorrow.  Ask for copies of all scans, hard copies as well as on a DVD.  At some point they must have biopsies, tell them that you want them tested.  Take notes, ask questions and tell them that you want them to help you get a second opinion.  

Linda

Trisha,

Your overwhelmed. To me it's obviously that your dad needs a second opinion.   There is a different diagnosis with an mri then a PET/CT.  The pet does not give the idea of what is going on in the brain.

Some of the drugs your mentioning are the same thing….. for example Yervoy and Ippi. Now that's it's fda approved the name has changed.   Your dad has to have a tumor tested to see if he has a particular mutation.  Being on the bottom of the foot could possible be c-kit.   There is so much new info out there that specialists have other options.  Right now there are new trials being opened with PD1 trials. 

You now can't worry about backwards and what has happened, now it's time to get your dad's options.   Let us know where your dad is located and the first decision is to get to a melanoma specialist.  Different hospitals offer different trials.  

Decisions can be discussed but it shouldn't  start tomorrow.  Ask for copies of all scans, hard copies as well as on a DVD.  At some point they must have biopsies, tell them that you want them tested.  Take notes, ask questions and tell them that you want them to help you get a second opinion.  

Linda

Trisha,

Your overwhelmed. To me it's obviously that your dad needs a second opinion.   There is a different diagnosis with an mri then a PET/CT.  The pet does not give the idea of what is going on in the brain.

Some of the drugs your mentioning are the same thing….. for example Yervoy and Ippi. Now that's it's fda approved the name has changed.   Your dad has to have a tumor tested to see if he has a particular mutation.  Being on the bottom of the foot could possible be c-kit.   There is so much new info out there that specialists have other options.  Right now there are new trials being opened with PD1 trials. 

You now can't worry about backwards and what has happened, now it's time to get your dad's options.   Let us know where your dad is located and the first decision is to get to a melanoma specialist.  Different hospitals offer different trials.  

Decisions can be discussed but it shouldn't  start tomorrow.  Ask for copies of all scans, hard copies as well as on a DVD.  At some point they must have biopsies, tell them that you want them tested.  Take notes, ask questions and tell them that you want them to help you get a second opinion.  

Linda

http://www.cancer.gov/cancertopics/pdq/treatment/melanoma/HealthProfessional/page9

Best wishes,
Jule

http://www.cancer.gov/cancertopics/pdq/treatment/melanoma/HealthProfessional/page9

Best wishes,
Jule

http://www.cancer.gov/cancertopics/pdq/treatment/melanoma/HealthProfessional/page9

Best wishes,
Jule

Trisha,

Where is your dad being treated?  If they have a tumor board it is very possible there is a melanoma specialist there.  Also have you read all the information on this web site.  Ipi/Yervoy is probably not the best option as it is often very slow acting.  However, make sure you have one of the tumors genetically tested.  There are several new protocols in testing phase (one one that is approved) that specifically address genetic mutations.  Make sure you or some one goes with your dad to the next appointment.  There is just way too much information for one person to take in.  Go with a written list of questions.  I've had to tell doctors "Wait, Wait I'm not done yet" as they were turning toward the door.  Make sure you get the time you need. 

Good Luck,

Mary

Trisha,

Where is your dad being treated?  If they have a tumor board it is very possible there is a melanoma specialist there.  Also have you read all the information on this web site.  Ipi/Yervoy is probably not the best option as it is often very slow acting.  However, make sure you have one of the tumors genetically tested.  There are several new protocols in testing phase (one one that is approved) that specifically address genetic mutations.  Make sure you or some one goes with your dad to the next appointment.  There is just way too much information for one person to take in.  Go with a written list of questions.  I've had to tell doctors "Wait, Wait I'm not done yet" as they were turning toward the door.  Make sure you get the time you need. 

Good Luck,

Mary

Trisha,

Where is your dad being treated?  If they have a tumor board it is very possible there is a melanoma specialist there.  Also have you read all the information on this web site.  Ipi/Yervoy is probably not the best option as it is often very slow acting.  However, make sure you have one of the tumors genetically tested.  There are several new protocols in testing phase (one one that is approved) that specifically address genetic mutations.  Make sure you or some one goes with your dad to the next appointment.  There is just way too much information for one person to take in.  Go with a written list of questions.  I've had to tell doctors "Wait, Wait I'm not done yet" as they were turning toward the door.  Make sure you get the time you need. 

Good Luck,

Mary

Trisha, I saddened and dismayed to read this update about your dad. I don't know how his doctor can say that he has maybe 2 months to live or a year with poor quality of life, because there is little about melanoma and its treatments that is predictable. Can you remind me about the treatments that he has had so far?

It is very understandable that your head is spinning. The first thing that I feel that one should do now is to make a treatment plan. This should be done when you talk to his oncologist. If you or your dad is not happy with what the oncologist says, then a second opinion is a good option. Ask for your dad's tumour to be tested genetically. The c-kit mutation comes to mind as a likely possibility.

Regarding treatments, there are a number that can be tried at stage 4. Yervoy is the new name for ipi or Ipilimumab, IL-2 is interleukin-2, Zelboraf is the new name for vemurafenib (BRAF enzyme inhibitor), and Temodar is a form of chemotherapy. 

I can see why you feel that the doctors have dragged their feet. Unfortunately, many doctors are very busy and they may not be fully up to date with the latest in melanoma treatments. In addition, melanoma may not be the doctor's specialty and therefore vigilance may not always be seen as a high priority.

Hope this helps.

Frank from Australia

Trisha, I saddened and dismayed to read this update about your dad. I don't know how his doctor can say that he has maybe 2 months to live or a year with poor quality of life, because there is little about melanoma and its treatments that is predictable. Can you remind me about the treatments that he has had so far?

It is very understandable that your head is spinning. The first thing that I feel that one should do now is to make a treatment plan. This should be done when you talk to his oncologist. If you or your dad is not happy with what the oncologist says, then a second opinion is a good option. Ask for your dad's tumour to be tested genetically. The c-kit mutation comes to mind as a likely possibility.

Regarding treatments, there are a number that can be tried at stage 4. Yervoy is the new name for ipi or Ipilimumab, IL-2 is interleukin-2, Zelboraf is the new name for vemurafenib (BRAF enzyme inhibitor), and Temodar is a form of chemotherapy. 

I can see why you feel that the doctors have dragged their feet. Unfortunately, many doctors are very busy and they may not be fully up to date with the latest in melanoma treatments. In addition, melanoma may not be the doctor's specialty and therefore vigilance may not always be seen as a high priority.

Hope this helps.

Frank from Australia

Trisha, I saddened and dismayed to read this update about your dad. I don't know how his doctor can say that he has maybe 2 months to live or a year with poor quality of life, because there is little about melanoma and its treatments that is predictable. Can you remind me about the treatments that he has had so far?

It is very understandable that your head is spinning. The first thing that I feel that one should do now is to make a treatment plan. This should be done when you talk to his oncologist. If you or your dad is not happy with what the oncologist says, then a second opinion is a good option. Ask for your dad's tumour to be tested genetically. The c-kit mutation comes to mind as a likely possibility.

Regarding treatments, there are a number that can be tried at stage 4. Yervoy is the new name for ipi or Ipilimumab, IL-2 is interleukin-2, Zelboraf is the new name for vemurafenib (BRAF enzyme inhibitor), and Temodar is a form of chemotherapy. 

I can see why you feel that the doctors have dragged their feet. Unfortunately, many doctors are very busy and they may not be fully up to date with the latest in melanoma treatments. In addition, melanoma may not be the doctor's specialty and therefore vigilance may not always be seen as a high priority.

Hope this helps.

Frank from Australia

Trish, please re-read my response on 7/11 to your 7/9 post and on 10/2 to your 9/27 post. 

Given the previous delay and efforts to eliminate melanoma repeatedly with radiation (Not often very successful), my current opinion would be to look very strongly at getting an immediate c-kit oncoprotein c-kit test (has at least a 20-30% chance of being positive. (Can be done essentially overnight at almost any local lab.)

If the first test is positive then the choice for me would be whether to start a c-kit type targeted drug immediately, to be tested for heart, breathing, kidneys and an Brain MRI to try to start IL-2 within a week or so.or to see if I could get into aPD-! trial IMMEDIATELY.

These first two treatments should be available to be started within days. If the oncoprotein test is positive, one may start either a Gleevec type drug while getting the c-kit DNA test conducted (Takes about a month). If the DNA test is negative the targeted drug can be stopped immediately.

The IL-2 could be started within days if one passes the physical tests needed for it. If the IL-2 seems to be working, an indication should be available within a month or so after starting the treatments. The problem with Yervoy, in this case would be that it may well take months to tell if one is responding to it

   .For the BRAF targeted drugs, It is likely to take 3 or more weeks to get the results of BRAF testing, again one question is,  can this delay be accepted? This testing could also be done while one is receiving IL-2 treatments.

The third option I would be interested in would be if entry into an clinical trial to PD1 could be started immediately. Again, timing might be critical.

You are welcome to print out any of my responses to your posts to discuss with your melanoma Oncologists. My Team (tumor board) at the University are all respected Melanoma specialists and melanoma researchers, They know that they do not know everything going on in the melanoma world, but they are willing to listen and to investigate what patients come up with as well as their normal processes..

    I have known of locations that upon obtaining positive results from the oncoprotein c-kit test, started patients on Gleevec while getting the results from the C-kit DNA tests. If ones DNA test are then negative, they stop the Gleevec type targeted drug and move on to another treatment. After the IL-2 treatments stopped working on me after 20 months; my melanoma went totally wild with growth. Thirty days after starting the Gleevec all growth stabilized. I have remained in essentially the same status now since March 2009.

    Good  luck with the meeting and I hope your parents tell the Oncologists that they want you in the room for the discussions.  If your parents request it, the Oncologist should have no problem with your prescence.  i have never had a problem with having anyone I wanted with me at my meetings.  I always want an extra ear.

Trish, please re-read my response on 7/11 to your 7/9 post and on 10/2 to your 9/27 post. 

Given the previous delay and efforts to eliminate melanoma repeatedly with radiation (Not often very successful), my current opinion would be to look very strongly at getting an immediate c-kit oncoprotein c-kit test (has at least a 20-30% chance of being positive. (Can be done essentially overnight at almost any local lab.)

If the first test is positive then the choice for me would be whether to start a c-kit type targeted drug immediately, to be tested for heart, breathing, kidneys and an Brain MRI to try to start IL-2 within a week or so.or to see if I could get into aPD-! trial IMMEDIATELY.

These first two treatments should be available to be started within days. If the oncoprotein test is positive, one may start either a Gleevec type drug while getting the c-kit DNA test conducted (Takes about a month). If the DNA test is negative the targeted drug can be stopped immediately.

The IL-2 could be started within days if one passes the physical tests needed for it. If the IL-2 seems to be working, an indication should be available within a month or so after starting the treatments. The problem with Yervoy, in this case would be that it may well take months to tell if one is responding to it

   .For the BRAF targeted drugs, It is likely to take 3 or more weeks to get the results of BRAF testing, again one question is,  can this delay be accepted? This testing could also be done while one is receiving IL-2 treatments.

The third option I would be interested in would be if entry into an clinical trial to PD1 could be started immediately. Again, timing might be critical.

You are welcome to print out any of my responses to your posts to discuss with your melanoma Oncologists. My Team (tumor board) at the University are all respected Melanoma specialists and melanoma researchers, They know that they do not know everything going on in the melanoma world, but they are willing to listen and to investigate what patients come up with as well as their normal processes..

    I have known of locations that upon obtaining positive results from the oncoprotein c-kit test, started patients on Gleevec while getting the results from the C-kit DNA tests. If ones DNA test are then negative, they stop the Gleevec type targeted drug and move on to another treatment. After the IL-2 treatments stopped working on me after 20 months; my melanoma went totally wild with growth. Thirty days after starting the Gleevec all growth stabilized. I have remained in essentially the same status now since March 2009.

    Good  luck with the meeting and I hope your parents tell the Oncologists that they want you in the room for the discussions.  If your parents request it, the Oncologist should have no problem with your prescence.  i have never had a problem with having anyone I wanted with me at my meetings.  I always want an extra ear.

Trish, please re-read my response on 7/11 to your 7/9 post and on 10/2 to your 9/27 post. 

Given the previous delay and efforts to eliminate melanoma repeatedly with radiation (Not often very successful), my current opinion would be to look very strongly at getting an immediate c-kit oncoprotein c-kit test (has at least a 20-30% chance of being positive. (Can be done essentially overnight at almost any local lab.)

If the first test is positive then the choice for me would be whether to start a c-kit type targeted drug immediately, to be tested for heart, breathing, kidneys and an Brain MRI to try to start IL-2 within a week or so.or to see if I could get into aPD-! trial IMMEDIATELY.

These first two treatments should be available to be started within days. If the oncoprotein test is positive, one may start either a Gleevec type drug while getting the c-kit DNA test conducted (Takes about a month). If the DNA test is negative the targeted drug can be stopped immediately.

The IL-2 could be started within days if one passes the physical tests needed for it. If the IL-2 seems to be working, an indication should be available within a month or so after starting the treatments. The problem with Yervoy, in this case would be that it may well take months to tell if one is responding to it

   .For the BRAF targeted drugs, It is likely to take 3 or more weeks to get the results of BRAF testing, again one question is,  can this delay be accepted? This testing could also be done while one is receiving IL-2 treatments.

The third option I would be interested in would be if entry into an clinical trial to PD1 could be started immediately. Again, timing might be critical.

You are welcome to print out any of my responses to your posts to discuss with your melanoma Oncologists. My Team (tumor board) at the University are all respected Melanoma specialists and melanoma researchers, They know that they do not know everything going on in the melanoma world, but they are willing to listen and to investigate what patients come up with as well as their normal processes..

    I have known of locations that upon obtaining positive results from the oncoprotein c-kit test, started patients on Gleevec while getting the results from the C-kit DNA tests. If ones DNA test are then negative, they stop the Gleevec type targeted drug and move on to another treatment. After the IL-2 treatments stopped working on me after 20 months; my melanoma went totally wild with growth. Thirty days after starting the Gleevec all growth stabilized. I have remained in essentially the same status now since March 2009.

    Good  luck with the meeting and I hope your parents tell the Oncologists that they want you in the room for the discussions.  If your parents request it, the Oncologist should have no problem with your prescence.  i have never had a problem with having anyone I wanted with me at my meetings.  I always want an extra ear.

Hello! I think is pretty unfair for your onc to suggest either do nothing or try something that will have minimal effects when at this time there are options for melanoma stage 4 patients.. First of all i suggest if possible go to a melanoma specialist, it is more possible that he/she will be more familiar to the new therapies or to possible new trials.. If you are from America it is worthy to ask for possible seats as antipd1 (immunotherapy drug) is more and more accessible to the patients.. It is very important to know if your father carries a braf mutation.. If he is braf positive he has the potential to take zelboraf which is known to have guick and dramatic responses thought it is said that its affect will stop after some months.. Also there is ipilimumab which is known since it is fda approved by his commercial name (yervoy).. It is known that it takes some time to kick in but it has good responses.. So here comes a good plan for me: First you should do a toumor biopsy from one of your father's toumors so that they can see wether he carries the braf mutation.. There will be about 2-3 weeks to have results..If he is currently asymptomatic he should have ipilimumab ASAP! If he is symptomatic and braf positive he may start with zelboraf to regress the toumor burden and some months after start ipilimumab.. Also i noticed that your father will have an mri for his brain.. If he has brain mets this problem can be resolved with gamma knife.. Gamma knife is neurosurgery and it can take care of all the visible toumors that are shown on mri.. Also thery may suggest you to try WBR (whole brain radiation therapy). As far as i have read it is not so affective for brain because melanoma is radioressistant.. I wish every best for your father.

Hello! I think is pretty unfair for your onc to suggest either do nothing or try something that will have minimal effects when at this time there are options for melanoma stage 4 patients.. First of all i suggest if possible go to a melanoma specialist, it is more possible that he/she will be more familiar to the new therapies or to possible new trials.. If you are from America it is worthy to ask for possible seats as antipd1 (immunotherapy drug) is more and more accessible to the patients.. It is very important to know if your father carries a braf mutation.. If he is braf positive he has the potential to take zelboraf which is known to have guick and dramatic responses thought it is said that its affect will stop after some months.. Also there is ipilimumab which is known since it is fda approved by his commercial name (yervoy).. It is known that it takes some time to kick in but it has good responses.. So here comes a good plan for me: First you should do a toumor biopsy from one of your father's toumors so that they can see wether he carries the braf mutation.. There will be about 2-3 weeks to have results..If he is currently asymptomatic he should have ipilimumab ASAP! If he is symptomatic and braf positive he may start with zelboraf to regress the toumor burden and some months after start ipilimumab.. Also i noticed that your father will have an mri for his brain.. If he has brain mets this problem can be resolved with gamma knife.. Gamma knife is neurosurgery and it can take care of all the visible toumors that are shown on mri.. Also thery may suggest you to try WBR (whole brain radiation therapy). As far as i have read it is not so affective for brain because melanoma is radioressistant.. I wish every best for your father.

Hello! I think is pretty unfair for your onc to suggest either do nothing or try something that will have minimal effects when at this time there are options for melanoma stage 4 patients.. First of all i suggest if possible go to a melanoma specialist, it is more possible that he/she will be more familiar to the new therapies or to possible new trials.. If you are from America it is worthy to ask for possible seats as antipd1 (immunotherapy drug) is more and more accessible to the patients.. It is very important to know if your father carries a braf mutation.. If he is braf positive he has the potential to take zelboraf which is known to have guick and dramatic responses thought it is said that its affect will stop after some months.. Also there is ipilimumab which is known since it is fda approved by his commercial name (yervoy).. It is known that it takes some time to kick in but it has good responses.. So here comes a good plan for me: First you should do a toumor biopsy from one of your father's toumors so that they can see wether he carries the braf mutation.. There will be about 2-3 weeks to have results..If he is currently asymptomatic he should have ipilimumab ASAP! If he is symptomatic and braf positive he may start with zelboraf to regress the toumor burden and some months after start ipilimumab.. Also i noticed that your father will have an mri for his brain.. If he has brain mets this problem can be resolved with gamma knife.. Gamma knife is neurosurgery and it can take care of all the visible toumors that are shown on mri.. Also thery may suggest you to try WBR (whole brain radiation therapy). As far as i have read it is not so affective for brain because melanoma is radioressistant.. I wish every best for your father.

Hi Trisha,

I am sorry that your father's melanoma progressed so quickly.  I am a newbie to MM as well and have learned so much from people in this forum. As others have said, the first thing is to get him tested to see whether he has the c-kit or braf mutation. This will determine what treatment options are available to him. 

Yervoy (aka IPI, Ipilimumab) is an immunotherapy and it does take some time to work.  Anti-PD1, only available through clinical trials now,  is also an immunotherapy and it too may take some time to work.  Zelboraf (aka vemurafenib) is for patients who have the BRAF mutation.  There are other inhibitors that work on those with C-kit mutations (dasatanib, or Gleevac (immatinib).  Temador and Decarbazine (DTIC) are chemotherapies.  

If you can, I suggest you go to the doctor's appointment with your father because there are alot of information.  Write down your questions and bring them with you.  When my father has his doctor's appointments,at least one of us will go with him so that we dont any miss information from the doctor.  If you can't be there, see if you can call in, I have done this with my father's appointments and his doctor is very accomodating. Ask all your questions regardless of how basic they seem.

Good luck with his treatment and keep us updated on how things go.

Chau

Hi Trisha,

I am sorry that your father's melanoma progressed so quickly.  I am a newbie to MM as well and have learned so much from people in this forum. As others have said, the first thing is to get him tested to see whether he has the c-kit or braf mutation. This will determine what treatment options are available to him. 

Yervoy (aka IPI, Ipilimumab) is an immunotherapy and it does take some time to work.  Anti-PD1, only available through clinical trials now,  is also an immunotherapy and it too may take some time to work.  Zelboraf (aka vemurafenib) is for patients who have the BRAF mutation.  There are other inhibitors that work on those with C-kit mutations (dasatanib, or Gleevac (immatinib).  Temador and Decarbazine (DTIC) are chemotherapies.  

If you can, I suggest you go to the doctor's appointment with your father because there are alot of information.  Write down your questions and bring them with you.  When my father has his doctor's appointments,at least one of us will go with him so that we dont any miss information from the doctor.  If you can't be there, see if you can call in, I have done this with my father's appointments and his doctor is very accomodating. Ask all your questions regardless of how basic they seem.

Good luck with his treatment and keep us updated on how things go.

Chau

Hi Trisha,

I am sorry that your father's melanoma progressed so quickly.  I am a newbie to MM as well and have learned so much from people in this forum. As others have said, the first thing is to get him tested to see whether he has the c-kit or braf mutation. This will determine what treatment options are available to him. 

Yervoy (aka IPI, Ipilimumab) is an immunotherapy and it does take some time to work.  Anti-PD1, only available through clinical trials now,  is also an immunotherapy and it too may take some time to work.  Zelboraf (aka vemurafenib) is for patients who have the BRAF mutation.  There are other inhibitors that work on those with C-kit mutations (dasatanib, or Gleevac (immatinib).  Temador and Decarbazine (DTIC) are chemotherapies.  

If you can, I suggest you go to the doctor's appointment with your father because there are alot of information.  Write down your questions and bring them with you.  When my father has his doctor's appointments,at least one of us will go with him so that we dont any miss information from the doctor.  If you can't be there, see if you can call in, I have done this with my father's appointments and his doctor is very accomodating. Ask all your questions regardless of how basic they seem.

Good luck with his treatment and keep us updated on how things go.

Chau