Brain Metastasis

I've been wondering how you've been doing.  Recently there has been people who posted that ippi caused them headaches. I hope yours is the same.  This is pollin and allergy season and hopefully that along with ippi is the cause.

Sending cyber hugs, please let us know the results. Harder to do than say but don't worry until evidence is in hand.

Linda

I've been wondering how you've been doing.  Recently there has been people who posted that ippi caused them headaches. I hope yours is the same.  This is pollin and allergy season and hopefully that along with ippi is the cause.

Sending cyber hugs, please let us know the results. Harder to do than say but don't worry until evidence is in hand.

Linda

I wish I had some words of wisdom.  I haven't taken treatment since 2006.  i had 7 lesions in the summer of 2006 then none in January 2007.  Weird.  I was informed I was in remission 2010.  I;ve had this disease since March 1984, I'm Staged 3B

I really wish you the best in your fight.  Be strong and never give in.  Best wishes and prayers to you.

C

I wish I had some words of wisdom.  I haven't taken treatment since 2006.  i had 7 lesions in the summer of 2006 then none in January 2007.  Weird.  I was informed I was in remission 2010.  I;ve had this disease since March 1984, I'm Staged 3B

I really wish you the best in your fight.  Be strong and never give in.  Best wishes and prayers to you.

C

Dear Wetterhorn:

I had horrible headaches after INF Therapy, surgery etc.  I had a consult with a neuro oncologist.  The tumor was the size of a quarter.  He said he couldn't tell if it was metastatic or benign.  So I had it removed and it was benign…..Yeah!….and then no more headaches.

The surgery is a bitch, I don't know if I'd do it again.  Think positive and strong….Kick ass.

Peace be with you

C

Dear Wetterhorn:

I had horrible headaches after INF Therapy, surgery etc.  I had a consult with a neuro oncologist.  The tumor was the size of a quarter.  He said he couldn't tell if it was metastatic or benign.  So I had it removed and it was benign…..Yeah!….and then no more headaches.

The surgery is a bitch, I don't know if I'd do it again.  Think positive and strong….Kick ass.

Peace be with you

C

Hi Wetterhorn,

I know several people who had an inflamed pituitary (hypophysitis) caused by Ipi.  The main symptom was a severe, constant headache.  In fact, this is a side effect that you should have been instructed to look for and report right away.  You might want to mention this to the tech doing the MRI tomorrow so the radiologist is certain to look for this.  Also, you might want to call your trial nurse/oncologist tomorrow.  If this is the case, blood work is needed, too, and medication to treat this problem.

Keep us posted.

Stay Strong

King

Stage IV 7/05 Liver mets

Hi Wetterhorn,

I know several people who had an inflamed pituitary (hypophysitis) caused by Ipi.  The main symptom was a severe, constant headache.  In fact, this is a side effect that you should have been instructed to look for and report right away.  You might want to mention this to the tech doing the MRI tomorrow so the radiologist is certain to look for this.  Also, you might want to call your trial nurse/oncologist tomorrow.  If this is the case, blood work is needed, too, and medication to treat this problem.

Keep us posted.

Stay Strong

King

Stage IV 7/05 Liver mets

I believe one of the stated side effects of Ipi is an inflamation of the pituitary gland, which can cause headaches.  I don't know if this is the cause of yours, but it is a possibility.

mzeigler

I believe one of the stated side effects of Ipi is an inflamation of the pituitary gland, which can cause headaches.  I don't know if this is the cause of yours, but it is a possibility.

mzeigler

Hi Wetterhorn —

Am in Week Six of ipi right now.  Feeling strong throbbing headache and joint pain pretty much all through my body.  Since I tested clean on a July 14 PET-CT(except for the one tumor we're trying to kill via ipi), I am fairly confident that I have no brain lesions at this thime (at least, let's hope not).

Sometimes, a headache is merely a headache…hope that's so for you as it is for me.

Hi Wetterhorn —

Am in Week Six of ipi right now.  Feeling strong throbbing headache and joint pain pretty much all through my body.  Since I tested clean on a July 14 PET-CT(except for the one tumor we're trying to kill via ipi), I am fairly confident that I have no brain lesions at this thime (at least, let's hope not).

Sometimes, a headache is merely a headache…hope that's so for you as it is for me.

I would advise you to get a brain MRI ASAP. I have been fighting melanoma for 10+ years and always had clear brain scans until July when multiple melanoma metastases showed up on my brain MRI. I started Whole Brain Radiation Treatment (WBRT) in late July but scheduled a second brain MRI for August 4th just to make sure the mets were there. Unfortunately they were still there. I completed the WBRT on August 10th, then another brain MRI on August 29th. On August 31st I met with my Radiation Oncologist who confirmed the mets are still present.

Prior to all this, I went through two 10 week infusion programs of Ipilimumab in 2010 and 2011 in the clinical trial prior to FDA approval as Yervoy. Yesterday I ran into another MPIPer at a meeting who told me that he too now has brain mets after completing Ipilimumab infusions. I'm not suggesting that there is a direct correlation here between Ipilimumab and subsequent brain mets, but I plan to discuss this with my oncologist next week as we develop a new plan of attack to knock down these mets to enable me to get to NIH for the t-cell replacement therapy clinical trial (criteria requires 3 or fewer brain mets to qualify for this trial).

Best of luck to you and keep fighting!

Bruce

I would advise you to get a brain MRI ASAP. I have been fighting melanoma for 10+ years and always had clear brain scans until July when multiple melanoma metastases showed up on my brain MRI. I started Whole Brain Radiation Treatment (WBRT) in late July but scheduled a second brain MRI for August 4th just to make sure the mets were there. Unfortunately they were still there. I completed the WBRT on August 10th, then another brain MRI on August 29th. On August 31st I met with my Radiation Oncologist who confirmed the mets are still present.

Prior to all this, I went through two 10 week infusion programs of Ipilimumab in 2010 and 2011 in the clinical trial prior to FDA approval as Yervoy. Yesterday I ran into another MPIPer at a meeting who told me that he too now has brain mets after completing Ipilimumab infusions. I'm not suggesting that there is a direct correlation here between Ipilimumab and subsequent brain mets, but I plan to discuss this with my oncologist next week as we develop a new plan of attack to knock down these mets to enable me to get to NIH for the t-cell replacement therapy clinical trial (criteria requires 3 or fewer brain mets to qualify for this trial).

Best of luck to you and keep fighting!

Bruce

So sorry to hear that you're battling headaches. Are the headaches anywhere specific? Are you having any vision issues?  If not, ignore the rest of this post. 

If so,you might see if your Onc/doc could add to your existing Brain MRI scan order to have them specifically add a scan of your orbits (eyes).  Basically it extends the time you're in the MRI tube, nothing more.  Results of the orbit scan would be of particular interest to any opthamologist you might need to see.

 I had 4 doses of Ipi and then one maintenance dose (5th dose).  Dose #5 caused me to have throbbing headaches specifically located across the front of my head above my eye brow line.  The cause was a VERY rarely seen autoimmune issue with my eyes (swelling of the eye muscles)  that was kicked off by Ipi (see my Patnet for all the details, "Rocco"). It was a long haul to figure out just what was causing it and how to alleviate it.  Heavy steriods and partnership between my Onc and a great Opthamology team.  Vision is now still 20/20. 

I've had a great response to Ipi with that last dose (#5) occuring in Feb 2009.  Since then I still received CTs chest/abdom/pelvis and a brain MRI every 3 months.

I wish you well in your fight and hope the MRI points to no mets.

Rocco, IV since 2005, ipi responder

So sorry to hear that you're battling headaches. Are the headaches anywhere specific? Are you having any vision issues?  If not, ignore the rest of this post. 

If so,you might see if your Onc/doc could add to your existing Brain MRI scan order to have them specifically add a scan of your orbits (eyes).  Basically it extends the time you're in the MRI tube, nothing more.  Results of the orbit scan would be of particular interest to any opthamologist you might need to see.

 I had 4 doses of Ipi and then one maintenance dose (5th dose).  Dose #5 caused me to have throbbing headaches specifically located across the front of my head above my eye brow line.  The cause was a VERY rarely seen autoimmune issue with my eyes (swelling of the eye muscles)  that was kicked off by Ipi (see my Patnet for all the details, "Rocco"). It was a long haul to figure out just what was causing it and how to alleviate it.  Heavy steriods and partnership between my Onc and a great Opthamology team.  Vision is now still 20/20. 

I've had a great response to Ipi with that last dose (#5) occuring in Feb 2009.  Since then I still received CTs chest/abdom/pelvis and a brain MRI every 3 months.

I wish you well in your fight and hope the MRI points to no mets.

Rocco, IV since 2005, ipi responder