Ipi vs radiation – second opinion WAY different

Hi,

I have been following your course of illness and treatments and think how hard it must be to deal with melanoma of the scalp and neck….mine is on my leg where I can hide the scars, etc. Your picture shows a radiantly beautiful woman and your posts show how strong and capable you are! Regarding the Ipi…..if you are a responder it can work miracles for you like it did me. I am sure you are reading up on it. I had few side effects, mostly fatigue, some nausea, and more recently some "athritis" like issues. I did have a non itchy rash for two or three weeks. I chose not to work as I have some other health issues (poorly healing surgical wider excisions wounds for 11 months). 

I hope you consider trying Ipi. Good luck in your decision making.

Vermont_Donna, stage 3a

This is an excerpt from an article about cancer treatments for melanoma, that was written by: 

Ipilimumab and Beyond: New Therapies Imminent in Melanoma

By: SUSAN LONDON, Internal Medicine News Digital Network:

Targeted Immunotherapy: Ipilimumab

The major breakthrough, of course, is ipilimumab, a monoclonal antibody that was recently approved for the treatment of metastatic melanoma. By targeting CTLA4 (cytotoxic T-lymphocyte antigen 4), which acts as a brake on T-cell activation, this antibody enhances the cells’ antitumor activity.

"What’s important with this paradigm shift with this treatment is that we are not targeting the tumor; we are targeting the patient’s immune system," Dr. O’Day said. "So what we are trying to do is change the immune system to be able to contain the cancer, not eradicate the cancer."

The drug achieves durable responses or stable disease in 20%-30% of patients, and the responses last not weeks or months, but years. An additional 10% of patients have a durable delayed response, characterized by early tumor progression on imaging (which biopsies suggest may actually be tumor flare) followed by regression, even to complete remission in some cases.

There have been two registration trials for ipilimumab. One trial randomized patients to DTIC plus ipilimumab vs. DTIC plus placebo as first-line therapy. Full results will likely be presented at the 2011 annual meeting of the American Society of Clinical Oncology.

The other trial, conducted in the second-line setting and presented by Dr. O’Day at ASCO 2010, compared ipilimumab, the gp100 melanoma vaccine, and the combination, which was expected to show synergy. But there was a similar improvement in overall survival relative to the vaccine with ipilimumab alone (hazard ratio, 0.66; P = .0026) and with the combination (HR, 0.68; P = .0004) (J. Clin. Oncol. 2010;28[suppl., abstract 4]:18).

The study stands out as the first randomized, phase III trial to show a survival benefit in metastatic melanoma. An especially noteworthy finding has been a sustained plateau in survival curves beyond 2 years – now approaching 7 years – with no late recurrences, Dr. O’Day said. "These were … landmark survival curves that we had never seen in stage IV melanoma."

The long-term survivors still have visible tumors on radiographic imaging, and some of the tumors even show metabolic activity on PET imaging. But the tumors are completely stable.

Of note, the patients in this ipilimumab trial had poor risk features, such as visceral metastases and elevated LDH levels, he said. "So this was a community-representative patient, [who] really had not been looked at much in sort of more sophisticated interleukin-2–based protocols."

And from a health economics perspective, the treatment is advantageous in that these benefits were achieved with four doses of the drug given over 12 weeks, without any maintenance treatment, Dr. O’Day added.

As expected, the drug’s adverse-effect profile is autoimmune in nature. "But it correlates with an antitumor response," he said. "So we want to see some autoimmunity because it means we are breaking tolerance."

About 30% of patients develop colitis, manifesting as watery, nonbloody diarrhea. He recommended early, aggressive management of this adverse effect with fluids, hydration, and high-dose steroids followed by a taper.

"A fascinating thing is that [in patients having a tumor response to ipilimumab], T cells targeting the tumor are resistant to apoptosis from the steroids, whereas the autoimmune T cells are not," Dr. O’Day noted. "So we can turn the autoimmunity off on a dime, and yet it’s incredibly rare, if the patient’s responding at that point, to lose control of the tumor."

Another important autoimmune adverse effect is hypophysitis, which occurs in about 10% of patients and manifests as profound fatigue or behavior change, headache, and/or visual changes such as photophobia or double vision. This adverse effect can be managed with replacement therapy to address the hormone deficits, according to Dr. O’Day. Most patients recover, but some will require lifelong therapy for persistent hormone deficits.

Hi,

I have been following your course of illness and treatments and think how hard it must be to deal with melanoma of the scalp and neck….mine is on my leg where I can hide the scars, etc. Your picture shows a radiantly beautiful woman and your posts show how strong and capable you are! Regarding the Ipi…..if you are a responder it can work miracles for you like it did me. I am sure you are reading up on it. I had few side effects, mostly fatigue, some nausea, and more recently some "athritis" like issues. I did have a non itchy rash for two or three weeks. I chose not to work as I have some other health issues (poorly healing surgical wider excisions wounds for 11 months). 

I hope you consider trying Ipi. Good luck in your decision making.

Vermont_Donna, stage 3a

This is an excerpt from an article about cancer treatments for melanoma, that was written by: 

Ipilimumab and Beyond: New Therapies Imminent in Melanoma

By: SUSAN LONDON, Internal Medicine News Digital Network:

Targeted Immunotherapy: Ipilimumab

The major breakthrough, of course, is ipilimumab, a monoclonal antibody that was recently approved for the treatment of metastatic melanoma. By targeting CTLA4 (cytotoxic T-lymphocyte antigen 4), which acts as a brake on T-cell activation, this antibody enhances the cells’ antitumor activity.

"What’s important with this paradigm shift with this treatment is that we are not targeting the tumor; we are targeting the patient’s immune system," Dr. O’Day said. "So what we are trying to do is change the immune system to be able to contain the cancer, not eradicate the cancer."

The drug achieves durable responses or stable disease in 20%-30% of patients, and the responses last not weeks or months, but years. An additional 10% of patients have a durable delayed response, characterized by early tumor progression on imaging (which biopsies suggest may actually be tumor flare) followed by regression, even to complete remission in some cases.

There have been two registration trials for ipilimumab. One trial randomized patients to DTIC plus ipilimumab vs. DTIC plus placebo as first-line therapy. Full results will likely be presented at the 2011 annual meeting of the American Society of Clinical Oncology.

The other trial, conducted in the second-line setting and presented by Dr. O’Day at ASCO 2010, compared ipilimumab, the gp100 melanoma vaccine, and the combination, which was expected to show synergy. But there was a similar improvement in overall survival relative to the vaccine with ipilimumab alone (hazard ratio, 0.66; P = .0026) and with the combination (HR, 0.68; P = .0004) (J. Clin. Oncol. 2010;28[suppl., abstract 4]:18).

The study stands out as the first randomized, phase III trial to show a survival benefit in metastatic melanoma. An especially noteworthy finding has been a sustained plateau in survival curves beyond 2 years – now approaching 7 years – with no late recurrences, Dr. O’Day said. "These were … landmark survival curves that we had never seen in stage IV melanoma."

The long-term survivors still have visible tumors on radiographic imaging, and some of the tumors even show metabolic activity on PET imaging. But the tumors are completely stable.

Of note, the patients in this ipilimumab trial had poor risk features, such as visceral metastases and elevated LDH levels, he said. "So this was a community-representative patient, [who] really had not been looked at much in sort of more sophisticated interleukin-2–based protocols."

And from a health economics perspective, the treatment is advantageous in that these benefits were achieved with four doses of the drug given over 12 weeks, without any maintenance treatment, Dr. O’Day added.

As expected, the drug’s adverse-effect profile is autoimmune in nature. "But it correlates with an antitumor response," he said. "So we want to see some autoimmunity because it means we are breaking tolerance."

About 30% of patients develop colitis, manifesting as watery, nonbloody diarrhea. He recommended early, aggressive management of this adverse effect with fluids, hydration, and high-dose steroids followed by a taper.

"A fascinating thing is that [in patients having a tumor response to ipilimumab], T cells targeting the tumor are resistant to apoptosis from the steroids, whereas the autoimmune T cells are not," Dr. O’Day noted. "So we can turn the autoimmunity off on a dime, and yet it’s incredibly rare, if the patient’s responding at that point, to lose control of the tumor."

Another important autoimmune adverse effect is hypophysitis, which occurs in about 10% of patients and manifests as profound fatigue or behavior change, headache, and/or visual changes such as photophobia or double vision. This adverse effect can be managed with replacement therapy to address the hormone deficits, according to Dr. O’Day. Most patients recover, but some will require lifelong therapy for persistent hormone deficits.

Oh Tracy, my scalp sister. I will pray that the ipi works for you. Some on here are complete responders and we wish nothing less for you!

BTW, what makes you bordering on Stage 4, the node in your neck?

Nicki, Stage 3b, scalp

Oh Tracy, my scalp sister. I will pray that the ipi works for you. Some on here are complete responders and we wish nothing less for you!

BTW, what makes you bordering on Stage 4, the node in your neck?

Nicki, Stage 3b, scalp

Tracy, I think Ipi, if it works, would be the way to go.  Sounds like you really need a systemic treatment of some sort.  I have two reservations.  1) You may want to consider cutting back at work if that is possible, or making arrangements to work at home part of the time.  It's a lot easier if you don't have to get up and get dressed or you can jump in the tub when you start itching too much.  2) I have not yet heard of anyone getting it through their insurance, nor have I heard of anyone getting approved for the manufacturers financial assistances yet. 

Insurance should start to cover this, because somewhere I read that Interferon injections(high dose) were actually about the same cost.  But start working with your doc on #2 first, since it seems like you have a great boss you can work out item #1 later.  It's a crime we have to worry about these things.  Sometimes I think I'll suffocate in paperwok.

Good Luck

Mary

Stage 3

Tracy, I think Ipi, if it works, would be the way to go.  Sounds like you really need a systemic treatment of some sort.  I have two reservations.  1) You may want to consider cutting back at work if that is possible, or making arrangements to work at home part of the time.  It's a lot easier if you don't have to get up and get dressed or you can jump in the tub when you start itching too much.  2) I have not yet heard of anyone getting it through their insurance, nor have I heard of anyone getting approved for the manufacturers financial assistances yet. 

Insurance should start to cover this, because somewhere I read that Interferon injections(high dose) were actually about the same cost.  But start working with your doc on #2 first, since it seems like you have a great boss you can work out item #1 later.  It's a crime we have to worry about these things.  Sometimes I think I'll suffocate in paperwok.

Good Luck

Mary

Stage 3

I think that you have been given good advice. The depth of your primary melanoma is of concern,
and this is a reason why systemic treatment with Yervoy is well worth considering.

You mention that you are working 40 hours per week. I wonder if you are able to reduce your
workload and the stress that goes with that? I ask this because stress is a factor that is often
overlooked in the recovery process.

Here is a link to an article about stress and cancer in general:
http://www.cancer.gov/cancertopics/factsheet/Risk/stress
It states that: "Studies have indicated that stress can affect tumor growth and spread …"

Therefore, it might be wise for you to discuss your situation with your boss. If you or your boss
needs any info about why you might need to spend less time at work, don't hesitate to ask.

Please don't feel guilty, as some things in life are out of our control.

Frank from Australia

I think that you have been given good advice. The depth of your primary melanoma is of concern,
and this is a reason why systemic treatment with Yervoy is well worth considering.

You mention that you are working 40 hours per week. I wonder if you are able to reduce your
workload and the stress that goes with that? I ask this because stress is a factor that is often
overlooked in the recovery process.

Here is a link to an article about stress and cancer in general:
http://www.cancer.gov/cancertopics/factsheet/Risk/stress
It states that: "Studies have indicated that stress can affect tumor growth and spread …"

Therefore, it might be wise for you to discuss your situation with your boss. If you or your boss
needs any info about why you might need to spend less time at work, don't hesitate to ask.

Please don't feel guilty, as some things in life are out of our control.

Frank from Australia

Hi,

Like Donna I too am an ipi responder.  Like you I work full time and continued to do so during my ipi treatments (Compassionate Use Trial). I eventually had some side effects after receiving 5 doses of ipi, but they were managable and I was able to continue working.   I experienced only a very, very light 'lacey' rash on upper backt – I couldn't really even see it but my doctors did.  I also experienced some autoimmune issues with my eyes – treated by steriods.  And yes, I'd do it again if I ever got a recurrence…

Wishing you well with your treatments!

Rocco, Stage IV

Hi,

Like Donna I too am an ipi responder.  Like you I work full time and continued to do so during my ipi treatments (Compassionate Use Trial). I eventually had some side effects after receiving 5 doses of ipi, but they were managable and I was able to continue working.   I experienced only a very, very light 'lacey' rash on upper backt – I couldn't really even see it but my doctors did.  I also experienced some autoimmune issues with my eyes – treated by steriods.  And yes, I'd do it again if I ever got a recurrence…

Wishing you well with your treatments!

Rocco, Stage IV