Eric is struggling and wants to stop looking for treatments

Jill,

I know it is hard when things look bad.  Don't give up.  talk to the doctors about the pain.  There is a lot of medication out there that should help.  I just went through radiation treatment and they prescribed Vicodin and Gabapentin for the pain.  it helped.  Nobody should have to suffer through the pain when there are a variety of options available.

I am not an expert on all of the options available since I have only been going through this nightmare since March 2010.

My Melanoma oncologist is part of the IPI trial that is going on.  Have you discussed this with your dr?

Have you have other blood test for HLA2? (I think that is what it is called).  If Eric is positive for HLA2, then there is a vaccine that NIH in Bethesda has available.

Have his tumors been tested for the BRAF mutation?  Mine was and I am positive for the Braf mutation.  Luckily I am currently NED after surgery and radiation (ended last week) and have a PET scan scheduled for this Friday.  If I have a reoccurance of Melanoma, then the pill PXL4032 is probably the next avenue I will pursue.

http://www.suite101.com/content/plx4032-targets-melanomas-with-braf-mutation-a167459

There are still other options out there if you check out http://clinicaltrials.gov/.

The doctors are researching different avenues all the time and what is available now was not available 5 years ago.  Hopefully what is available 5 years from now will be much improved over what is currently available.  We just have to keep at it to make sure we are around in 5 years to be able to take advantage of any new options as they become available.

I know that Eric is in a bad place right now and things look bleak, but plenty of other people on this board have had it as bad or worse and keep trying other options to get better.  I know it is hard, but if he can get the pain under control, maybe his outlook will improve enough that he is ready to try something else.  Mel sucks.

Good luck and God bless.  My thoughts and prayers are with you.

Bill

Jill,

I know it is hard when things look bad.  Don't give up.  talk to the doctors about the pain.  There is a lot of medication out there that should help.  I just went through radiation treatment and they prescribed Vicodin and Gabapentin for the pain.  it helped.  Nobody should have to suffer through the pain when there are a variety of options available.

I am not an expert on all of the options available since I have only been going through this nightmare since March 2010.

My Melanoma oncologist is part of the IPI trial that is going on.  Have you discussed this with your dr?

Have you have other blood test for HLA2? (I think that is what it is called).  If Eric is positive for HLA2, then there is a vaccine that NIH in Bethesda has available.

Have his tumors been tested for the BRAF mutation?  Mine was and I am positive for the Braf mutation.  Luckily I am currently NED after surgery and radiation (ended last week) and have a PET scan scheduled for this Friday.  If I have a reoccurance of Melanoma, then the pill PXL4032 is probably the next avenue I will pursue.

http://www.suite101.com/content/plx4032-targets-melanomas-with-braf-mutation-a167459

There are still other options out there if you check out http://clinicaltrials.gov/.

The doctors are researching different avenues all the time and what is available now was not available 5 years ago.  Hopefully what is available 5 years from now will be much improved over what is currently available.  We just have to keep at it to make sure we are around in 5 years to be able to take advantage of any new options as they become available.

I know that Eric is in a bad place right now and things look bleak, but plenty of other people on this board have had it as bad or worse and keep trying other options to get better.  I know it is hard, but if he can get the pain under control, maybe his outlook will improve enough that he is ready to try something else.  Mel sucks.

Good luck and God bless.  My thoughts and prayers are with you.

Bill

Jill, you are not selfish!  If you were you would not have stayed in this battle with Eric.  Some Onc. are not geared toward pain management so you may need to ask for a referral.  If you can be proactive about the pain and get that at least bearable, hopefully Eric will begin to have a brighter outlook. 

If you have followed Will's battle on this site you would realize that what Will is feeling is not unusual.  If he can see same progress or get relief from the pain, you will again see hope in his eyes.

Hang in there.

Jill, you are not selfish!  If you were you would not have stayed in this battle with Eric.  Some Onc. are not geared toward pain management so you may need to ask for a referral.  If you can be proactive about the pain and get that at least bearable, hopefully Eric will begin to have a brighter outlook. 

If you have followed Will's battle on this site you would realize that what Will is feeling is not unusual.  If he can see same progress or get relief from the pain, you will again see hope in his eyes.

Hang in there.

Jill, what sometimes happens with a patient, is that they start having quality of life issues.  Rather than putting things in the perspective of fighting or quitting(black or white), it will probably make it easier to first address the things that are really bothering Eric, ie pain/things he still wants to do, etc.  Taking a break for a while is not the same as quitting, it is ok to take a time out and think, to evaluate all of the negative information you have been recieving with his treatments so far.  Sometimes that alone can get somebody back into a fighting spirit.  Figure out some things that you guys want(and can) do together, do those, and then go from there(think things through on a romantic weekend).  That way, you can enjoy life and make big decisions at the same time.

Best

John

Jill, what sometimes happens with a patient, is that they start having quality of life issues.  Rather than putting things in the perspective of fighting or quitting(black or white), it will probably make it easier to first address the things that are really bothering Eric, ie pain/things he still wants to do, etc.  Taking a break for a while is not the same as quitting, it is ok to take a time out and think, to evaluate all of the negative information you have been recieving with his treatments so far.  Sometimes that alone can get somebody back into a fighting spirit.  Figure out some things that you guys want(and can) do together, do those, and then go from there(think things through on a romantic weekend).  That way, you can enjoy life and make big decisions at the same time.

Best

John

Jill, I am so sorry ya'll are going through this. Being in pain and seeing one you love in pain is the worst. Is he on anything for pain now? Are you seeing a melanoma specialist?  Keep hope alive….maybe this next treatment will be the magic bullet for him. Hope you have some good support of family and friends near you…..a caretakers job is a tough one. 

Take care,

molly

Jill, I am so sorry ya'll are going through this. Being in pain and seeing one you love in pain is the worst. Is he on anything for pain now? Are you seeing a melanoma specialist?  Keep hope alive….maybe this next treatment will be the magic bullet for him. Hope you have some good support of family and friends near you…..a caretakers job is a tough one. 

Take care,

molly

Jill,

Have you and Eric ruled out Ipilimumab?  It has shown promise and would be worth consideration.  He would seem to be eligible for the "compassionate use" trial, although there is not a site in Pittburgh.  For more information, look at :

http://www.clinicaltrials.gov/ct2/show/NCT00495066?term=ipilimumab&recr=Open&rank=8

Best wishes to both of you!

Jim

Jill,

Have you and Eric ruled out Ipilimumab?  It has shown promise and would be worth consideration.  He would seem to be eligible for the "compassionate use" trial, although there is not a site in Pittburgh.  For more information, look at :

http://www.clinicaltrials.gov/ct2/show/NCT00495066?term=ipilimumab&recr=Open&rank=8

Best wishes to both of you!

Jim

Jill-

I have a young wife who is also stage 4 and has been through numerosu treatments.  Like many have already said what about PLX or IPI.  My wife was on PLX for 6 months, and for that time it at least kept the disease from progressing.  This time allowed her to regain some strength and do some of the things she had been missing.  My wife has also had severe bouts with pain.  She wers a Fentanyl patch and takes morphine for breakthrough pain.  Depending on your doctor ask him or her for stronger pain medication.  If you can control the pain it definitely will help to change the attitude.  Best of luck

B

Jill-

I have a young wife who is also stage 4 and has been through numerosu treatments.  Like many have already said what about PLX or IPI.  My wife was on PLX for 6 months, and for that time it at least kept the disease from progressing.  This time allowed her to regain some strength and do some of the things she had been missing.  My wife has also had severe bouts with pain.  She wers a Fentanyl patch and takes morphine for breakthrough pain.  Depending on your doctor ask him or her for stronger pain medication.  If you can control the pain it definitely will help to change the attitude.  Best of luck

B

Hi Jill,

I'm so sorry to hear about the pain that Eric is going through. As we have discussed, I am running a similar course with 100s of cutaneous tumors on my leg and just having scans am worried that there is more progression than that, waiting.  I know you mentioned Dr. Weber discussed B-RAF..that was going to be the first option for me..but I was negative.  I have heard that the treatment is not too 'tough', I like Eric will be trying ipi now within a few weeks. 

Why doesn't Eric take a 'break' for a few weeks, ask Dr. Weber to refer him to a 'pain' specialist while they test one of his tumors from surgery for the B-RAF mutation. It will give him much needed time to recoop from all this pain.

Also during our discussions a few months ago, somebody wrote that their family member had the same progression as ours and they were doing a clinical trial in Fort Myers that appears to be working well.

I know it includes Carbpolatin which Eric has taken but the study is largely about Everolimus..I don't know much about this but perhaps you can speak to Dr. Weber about this as well.

I wish both you and Eric a successful treatment and much less pain.  Val

Hi Jill,

I'm so sorry to hear about the pain that Eric is going through. As we have discussed, I am running a similar course with 100s of cutaneous tumors on my leg and just having scans am worried that there is more progression than that, waiting.  I know you mentioned Dr. Weber discussed B-RAF..that was going to be the first option for me..but I was negative.  I have heard that the treatment is not too 'tough', I like Eric will be trying ipi now within a few weeks. 

Why doesn't Eric take a 'break' for a few weeks, ask Dr. Weber to refer him to a 'pain' specialist while they test one of his tumors from surgery for the B-RAF mutation. It will give him much needed time to recoop from all this pain.

Also during our discussions a few months ago, somebody wrote that their family member had the same progression as ours and they were doing a clinical trial in Fort Myers that appears to be working well.

I know it includes Carbpolatin which Eric has taken but the study is largely about Everolimus..I don't know much about this but perhaps you can speak to Dr. Weber about this as well.

I wish both you and Eric a successful treatment and much less pain.  Val

Hi Jill

sorry to hear of your situation. I know of many on this Board who in the most desperate position actually turn the corner. One notable person is Mark from Catskills, who had progressed so far with Mel that he was confined to a wheel chair. Ippi changed his life. Tell Eric to read his old posts.

See if you can get into an Ippi trial. In the short term  you might like to look up Oncovex who have a Trial that is for tumors that can be directly injected. It is a vrus combined with GMCSF which helps boost the immune system.

best wishes

James

Hi Jill

sorry to hear of your situation. I know of many on this Board who in the most desperate position actually turn the corner. One notable person is Mark from Catskills, who had progressed so far with Mel that he was confined to a wheel chair. Ippi changed his life. Tell Eric to read his old posts.

See if you can get into an Ippi trial. In the short term  you might like to look up Oncovex who have a Trial that is for tumors that can be directly injected. It is a vrus combined with GMCSF which helps boost the immune system.

best wishes

James

Hi Jill and Eric,

I am so sorry that you're having to deal with all that's happening to you right now.   I do hope you will find peace and comfort in God's love.  I am having to seek that same kind of peace, it is so hard to understand why things are as they are.  I'm sure Eric is glad that you're there for him.  Being a care giver to a loved one has to be one of the most difficult things ever.

I love you both, and I'll keep you in my prayers…

Nancy 

Hi Jill and Eric,

I am so sorry that you're having to deal with all that's happening to you right now.   I do hope you will find peace and comfort in God's love.  I am having to seek that same kind of peace, it is so hard to understand why things are as they are.  I'm sure Eric is glad that you're there for him.  Being a care giver to a loved one has to be one of the most difficult things ever.

I love you both, and I'll keep you in my prayers…

Nancy 

Hi Jill, I am so sorry to hear this but totally understand what you are going through, as you know my Eric just got out of the hospital after 6 days. Now that the pain is better, he says to give him a day or two and he will be  back in the fight. Pain really was hard on him and he was unable to see anything past the pain. I am also sorry it appears some posters are getting us mixed up, I think I read someone mentioned Dr Weber to you, I know it is confusing having both of us on here with the same names. The pallitive care team really took care of the pain for my Eric hopefully afer a few days of rest we can get back in the fight. Dr Weber said tonight if we did nothing at all Eric would be dead in 4 months so we are going to keep fighting and praying but first we are going to take a few pain free days and just regroup, refocus and love one another. Please ask for a pain sepcialist, your Eric should not have to suffer so much even if he decides to not continue treatment. It is not selfish to want him to keep fighting but as I know you know his quality is most important, I think once you get a pain team involved, even if they put him on heavy meds like they did for my Eric you will see the light back in his eyes and maybe the fight back in his step. I am always praying for you guys and I am here if you need me.

Love

Jill

(the other Jill and Eric)

Hi Jill, I am so sorry to hear this but totally understand what you are going through, as you know my Eric just got out of the hospital after 6 days. Now that the pain is better, he says to give him a day or two and he will be  back in the fight. Pain really was hard on him and he was unable to see anything past the pain. I am also sorry it appears some posters are getting us mixed up, I think I read someone mentioned Dr Weber to you, I know it is confusing having both of us on here with the same names. The pallitive care team really took care of the pain for my Eric hopefully afer a few days of rest we can get back in the fight. Dr Weber said tonight if we did nothing at all Eric would be dead in 4 months so we are going to keep fighting and praying but first we are going to take a few pain free days and just regroup, refocus and love one another. Please ask for a pain sepcialist, your Eric should not have to suffer so much even if he decides to not continue treatment. It is not selfish to want him to keep fighting but as I know you know his quality is most important, I think once you get a pain team involved, even if they put him on heavy meds like they did for my Eric you will see the light back in his eyes and maybe the fight back in his step. I am always praying for you guys and I am here if you need me.

Love

Jill

(the other Jill and Eric)

Jill, Base on Eric's medical history, it looks like the therapies are not breaking the tolerance of the immune system. Once the tumors take hold they secrete immunosuppressive cytokines allowing them (tumors) to control the microenviroment.

The therapy that is needed is one that breaks the tolerance of the Tregs. Ipilimumab may be that therapy.

Jill, Base on Eric's medical history, it looks like the therapies are not breaking the tolerance of the immune system. Once the tumors take hold they secrete immunosuppressive cytokines allowing them (tumors) to control the microenviroment.

The therapy that is needed is one that breaks the tolerance of the Tregs. Ipilimumab may be that therapy.

Jill, Base on Eric's medical history, it looks like the therapies are not breaking the tolerance of the immune system. Once the tumors take hold they secrete immunosuppressive cytokines allowing them (tumors) to control the microenviroment.

The therapy that is needed is one that breaks the tolerance of the Tregs. Ipilimumab may be that therapy.

Jill, Base on Eric's medical history, it looks like the therapies are not breaking the tolerance of the immune system. Once the tumors take hold they secrete immunosuppressive cytokines allowing them (tumors) to control the microenviroment.

The therapy that is needed is one that breaks the tolerance of the Tregs. Ipilimumab may be that therapy.

Jill,

Is Eric BRAF positive? Have you considered PLX4032. 60% of all melanoma cancers are BRAF positive, and PLX4032 has an 80 to 90% probability of shrinking the tumors.  I have stage 4. I started PLX4032 February 28, 2010 and it has reduced my tumors by 54%. It has relatively few side effects. It would be worth a shot. My strategy is to allow it to shrink my cancer as much as possible, or kill it, and if it stops working shift over to ipilimibaub and hope to manage or kill it.  Ipi will likely be FDA approved by the end of the year, and PLX4032 will likely be FDA approved by the end of 2011. 

See this link: http://www.melanoma.org/learn-more/melanoma-101/american-society-clinical-oncology-asco-june-2010-update

Cheryl

Jill,

Is Eric BRAF positive? Have you considered PLX4032. 60% of all melanoma cancers are BRAF positive, and PLX4032 has an 80 to 90% probability of shrinking the tumors.  I have stage 4. I started PLX4032 February 28, 2010 and it has reduced my tumors by 54%. It has relatively few side effects. It would be worth a shot. My strategy is to allow it to shrink my cancer as much as possible, or kill it, and if it stops working shift over to ipilimibaub and hope to manage or kill it.  Ipi will likely be FDA approved by the end of the year, and PLX4032 will likely be FDA approved by the end of 2011. 

See this link: http://www.melanoma.org/learn-more/melanoma-101/american-society-clinical-oncology-asco-june-2010-update

Cheryl

You have a great option with the BRAF inhibitor drug.  There is a better response rate to this drug than any other.  With a BRAF mutation, he has an 80% chance of seeing results.  These results are quick and amazing.  Unfortunately, it takes months to know if ipi is effective, and he will likely feel worse in the meantime.  This is all relatively new, so your specialist may not have first hand experience with the inhibitor drugs.  

Lauren (mom to Jenna)  

You have a great option with the BRAF inhibitor drug.  There is a better response rate to this drug than any other.  With a BRAF mutation, he has an 80% chance of seeing results.  These results are quick and amazing.  Unfortunately, it takes months to know if ipi is effective, and he will likely feel worse in the meantime.  This is all relatively new, so your specialist may not have first hand experience with the inhibitor drugs.  

Lauren (mom to Jenna)