melonoma getting worse. Need information about treatment Please respond

Jim, the side effects were manageable for me.  As soon as I got the diahrrea my doc put me on endocort C, which is a steroid that only works in the gut, so you don't have to stop the ipi by staying on it as you sometimes do with a regular steroid, and the ipi rash was manageable for me bacause my doc used doxipin (generic name for old anti-depressant) which was the only thing that worked.

I had only a partial response to Ipi, although there is a slight chance I might still respond, I am scheduled to begin IL-2 on Tuesday.  compared to IL-2's reported side-effects, ipi side-effects were milder.  I believe the worst side effects for ipi were reported during the trial phase when they were using 10 mg. per infusion, now they use 3mg.  

Don't get me wrong, you do have to be monitored quite closely on Ipi, and report ANY and ALL side effects to the doc.  Mine said to me, "you can't call me too much–it's your job to report in and it's my job to do the worrying if necessary."  I've never gotten such good care and immediate call-backs as I did when on  Ipi.

Good luck to you,

karen

Jim, the side effects were manageable for me.  As soon as I got the diahrrea my doc put me on endocort C, which is a steroid that only works in the gut, so you don't have to stop the ipi by staying on it as you sometimes do with a regular steroid, and the ipi rash was manageable for me bacause my doc used doxipin (generic name for old anti-depressant) which was the only thing that worked.

I had only a partial response to Ipi, although there is a slight chance I might still respond, I am scheduled to begin IL-2 on Tuesday.  compared to IL-2's reported side-effects, ipi side-effects were milder.  I believe the worst side effects for ipi were reported during the trial phase when they were using 10 mg. per infusion, now they use 3mg.  

Don't get me wrong, you do have to be monitored quite closely on Ipi, and report ANY and ALL side effects to the doc.  Mine said to me, "you can't call me too much–it's your job to report in and it's my job to do the worrying if necessary."  I've never gotten such good care and immediate call-backs as I did when on  Ipi.

Good luck to you,

karen

This drug was known as vemurafenib or PLX4032 during the study phase.  You can do a search on either of these names also on this board for info.  Are you BRAF positive ?  That is the only thing it works for. 

This drug was known as vemurafenib or PLX4032 during the study phase.  You can do a search on either of these names also on this board for info.  Are you BRAF positive ?  That is the only thing it works for. 

Hi Jim,

 I had 4 infusions of Ipi/Yervoy in 08. It hadn't been approved at that time. All the patients and I were given a high dose at 10kg/mg. At that dose there were probably more severe side effects. I am a responder to Ipi as it boosted my immune system significantly, a response that my doctor sees in 10-20% of patients. I started the trial with resected melanoma.

 My response came at a cost as Ipi attacked the pituitary gland. Since Nov. of 08 I've been on a steroid as a hormone replacement as the pituitary didn't regain it's function. Since then I've had 2 cases of cellulitis, a bacterial infection under the skin. Apparently people on steroids may be at greater risk for this and other infections as steroids weaken the immune system. Kind of crazy, thinking that my positive response would put me on steroids( 50% of patients are able to taper off the steroids).

 That being said most of my other side effects were minor and manageable. I don't want to scare you but just want to share my experience. I believe the standard dose given for Yervoy is 3kg/mg. It's true, if you are a responder (around 30% are), Yervoy has the capacity to rev up your immune system to take down tumors. I don't know anything about Zelboraf.

 Best of success and God Bless,

Jim M.

stage 3C

NED: 3 years 10 months

Hi Jim,

 I had 4 infusions of Ipi/Yervoy in 08. It hadn't been approved at that time. All the patients and I were given a high dose at 10kg/mg. At that dose there were probably more severe side effects. I am a responder to Ipi as it boosted my immune system significantly, a response that my doctor sees in 10-20% of patients. I started the trial with resected melanoma.

 My response came at a cost as Ipi attacked the pituitary gland. Since Nov. of 08 I've been on a steroid as a hormone replacement as the pituitary didn't regain it's function. Since then I've had 2 cases of cellulitis, a bacterial infection under the skin. Apparently people on steroids may be at greater risk for this and other infections as steroids weaken the immune system. Kind of crazy, thinking that my positive response would put me on steroids( 50% of patients are able to taper off the steroids).

 That being said most of my other side effects were minor and manageable. I don't want to scare you but just want to share my experience. I believe the standard dose given for Yervoy is 3kg/mg. It's true, if you are a responder (around 30% are), Yervoy has the capacity to rev up your immune system to take down tumors. I don't know anything about Zelboraf.

 Best of success and God Bless,

Jim M.

stage 3C

NED: 3 years 10 months

ZELBORAF was approved only for those that have the BRAF V600E mutation.  If you have this mutation it may provide a rapid reduction in your tumor load.  How long the benefits will last is still under investigation.

ZELBORAF was approved only for those that have the BRAF V600E mutation.  If you have this mutation it may provide a rapid reduction in your tumor load.  How long the benefits will last is still under investigation.

It looks as if you are seeking comments concerning Zelboraf on this post; I hope the following helps.

In March 2010 I started on Zelboraf as part of the phase 2 or BRIM2 trial and today I am still part of that trial.

When I started on the trial, my lung mets measured 8.9 x 6.8 cm and 5.2 x 2.5 cm.  I had a very bad cough, had breathing difficulty, and it was difficult to speak without having to stop to catch my breath.  Within three weeks of taking Zelboraf, these conditions were greatly improved.  At six weeks in, I had my first set of monitoring scans and the mets were now 6.6 x 5.3 cm and 4.5 x 2.3 cm for a combined shrinkage of 38%.

Every six weeks I would have monitoring scans and continued to experience significant shrinkage.  By mid-December 2010, mets were 2.7 x .5 cm and 2.3 x 1.1 cm.  More importantly, the PET scan showed no “abnormal hypermetabolic activity to suggest malignancy”, condition and approximate size I have today.

I am also very fortunate to not have severe side effects.  Over the course of treatment, I experienced: mild joint pain, mild fatigue, body rash (none on face), photosensitivity, body hair loss (not head), mild neuropathy/ swelling in feet, and warts (one of which turned out to be a squamous cell carcinoma).

As of today I still have: mild body rash (none on face), photosensitivity, body hair loss (it's growing back), and mild neuropathy/ swelling in feet.

While I recognize my Zelboraf results are extraordinary there are other individuals experiencing phenomenal results.  Should you ultimately decide to proceed with Zelboraf, I can only hope that you too have similar results.

Dick

It looks as if you are seeking comments concerning Zelboraf on this post; I hope the following helps.

In March 2010 I started on Zelboraf as part of the phase 2 or BRIM2 trial and today I am still part of that trial.

When I started on the trial, my lung mets measured 8.9 x 6.8 cm and 5.2 x 2.5 cm.  I had a very bad cough, had breathing difficulty, and it was difficult to speak without having to stop to catch my breath.  Within three weeks of taking Zelboraf, these conditions were greatly improved.  At six weeks in, I had my first set of monitoring scans and the mets were now 6.6 x 5.3 cm and 4.5 x 2.3 cm for a combined shrinkage of 38%.

Every six weeks I would have monitoring scans and continued to experience significant shrinkage.  By mid-December 2010, mets were 2.7 x .5 cm and 2.3 x 1.1 cm.  More importantly, the PET scan showed no “abnormal hypermetabolic activity to suggest malignancy”, condition and approximate size I have today.

I am also very fortunate to not have severe side effects.  Over the course of treatment, I experienced: mild joint pain, mild fatigue, body rash (none on face), photosensitivity, body hair loss (not head), mild neuropathy/ swelling in feet, and warts (one of which turned out to be a squamous cell carcinoma).

As of today I still have: mild body rash (none on face), photosensitivity, body hair loss (it's growing back), and mild neuropathy/ swelling in feet.

While I recognize my Zelboraf results are extraordinary there are other individuals experiencing phenomenal results.  Should you ultimately decide to proceed with Zelboraf, I can only hope that you too have similar results.

Dick

Jim,

I'm the poster child for Yervoy/ipi followed immediately by BRAF.

Read my profile for full details, but the two in combination was literally a lifesaver.

Very little side effects with ipi=fatigue, some dizziness and nausea. BRAF side effects=rash which worked down from my neck/torso to my legs. Ugly but manageable. A little fatigue, also.

Best of luck!

TracyLee

Jim,

I'm the poster child for Yervoy/ipi followed immediately by BRAF.

Read my profile for full details, but the two in combination was literally a lifesaver.

Very little side effects with ipi=fatigue, some dizziness and nausea. BRAF side effects=rash which worked down from my neck/torso to my legs. Ugly but manageable. A little fatigue, also.

Best of luck!

TracyLee