› Forums › General Melanoma Community › Ipi 3 on hold – brain exploding headaches!
- This topic has 18 replies, 5 voices, and was last updated 10 years, 2 months ago by
Dave from Ormond.
- Post
-
- February 27, 2014 at 10:03 pm
Hi friends,
Ok I exaggerate for color and and to keep things interesting, but you get my drift. Up until 10 days ago the only side effect I had from Ipi 1 & 2 was tiredness, but even that wasn't too bad. Then 10 days ago everything slowly ramped (boiling the frog?) up to wanting to sleep 12 hours and brain exploding headaches.
So yesterday when I went in for my third Ipi infusion, and rather than getting it, I got a bag of steroids and an brain MRI. Rock Star Doc figures it's a swollen pituitary glad that's making my head want to explode, as it seems to be a fairly common side effect with ipi. I should find out more after he gets the results of the MRI, but I see steroids and daily replacement drugs in my future.
On the good news side, I found out that I am BRAF + with a "rare" subtype. Nice to know.
Blessing!!
Julie
- Replies
-
-
- February 27, 2014 at 10:21 pm
Julie,
Welcome to the exploding brain club and may I say I'm sorry you are here. Myself, TinaD, and Dave from Ormond can definitely relate to what you are going through. You should find if you haven't already that the steriods take care of the headaches pretty quick. If you do some searches for myself, Tina, and Dave's post you might get some useful info. If you can't find them let me know and I'll try to provide the links. Hope you are feeling better.
Brian
-
- February 27, 2014 at 10:21 pm
Julie,
Welcome to the exploding brain club and may I say I'm sorry you are here. Myself, TinaD, and Dave from Ormond can definitely relate to what you are going through. You should find if you haven't already that the steriods take care of the headaches pretty quick. If you do some searches for myself, Tina, and Dave's post you might get some useful info. If you can't find them let me know and I'll try to provide the links. Hope you are feeling better.
Brian
-
- February 27, 2014 at 10:21 pm
Julie,
Welcome to the exploding brain club and may I say I'm sorry you are here. Myself, TinaD, and Dave from Ormond can definitely relate to what you are going through. You should find if you haven't already that the steriods take care of the headaches pretty quick. If you do some searches for myself, Tina, and Dave's post you might get some useful info. If you can't find them let me know and I'll try to provide the links. Hope you are feeling better.
Brian
-
- February 27, 2014 at 11:50 pm
Hi Julie,
I, too, had the 'brain exploding' headaches-you are not exaggerating. I still see an endocrinologist (two years now) and 5mg of prednisone keeps it in check.
Good luck.
Brendan
-
- February 28, 2014 at 1:41 am
Hey Brendan,
Not as long as you, but I'm also on the 5mg a day. Do you ever take 2.5 in the evenings? Endocrinologist says that's an option for me but so far I haven't felt like I needed it.
Also just found out I'm low on testosterone as well so now I'm taking that. 🙁
Anyone else with the pituitary inflamation have heat surges as a result. I'm telling you what, I get periods where it's like a furnace went off inside of me and I even start sweating. Just started the testosterone and after a few days it seems like the furnance has been turned down a little but I'm still getting the hot flashes. Hoping it will go away completely once my testosterone levels get back up to normal.
Brian
-
- February 28, 2014 at 6:55 pm
Hey Brian,
I've also had hot flashes. I just figured it was "normal". Yikes!
On the good side, the bag of steroids have taken the explosion from a 7-9 down to a 1-2 and I can think again. Yea! Also , Rock Star Doc's office just called and said that my MRI looked good and that the majority of my boodwork was also fine. Just waiting on the adrenal and pituatary hormone tests now.
Ipi 3 is scheduled for next week.
Julie
-
- February 28, 2014 at 6:55 pm
Hey Brian,
I've also had hot flashes. I just figured it was "normal". Yikes!
On the good side, the bag of steroids have taken the explosion from a 7-9 down to a 1-2 and I can think again. Yea! Also , Rock Star Doc's office just called and said that my MRI looked good and that the majority of my boodwork was also fine. Just waiting on the adrenal and pituatary hormone tests now.
Ipi 3 is scheduled for next week.
Julie
-
- February 28, 2014 at 6:55 pm
Hey Brian,
I've also had hot flashes. I just figured it was "normal". Yikes!
On the good side, the bag of steroids have taken the explosion from a 7-9 down to a 1-2 and I can think again. Yea! Also , Rock Star Doc's office just called and said that my MRI looked good and that the majority of my boodwork was also fine. Just waiting on the adrenal and pituatary hormone tests now.
Ipi 3 is scheduled for next week.
Julie
-
- February 28, 2014 at 1:41 am
Hey Brendan,
Not as long as you, but I'm also on the 5mg a day. Do you ever take 2.5 in the evenings? Endocrinologist says that's an option for me but so far I haven't felt like I needed it.
Also just found out I'm low on testosterone as well so now I'm taking that. 🙁
Anyone else with the pituitary inflamation have heat surges as a result. I'm telling you what, I get periods where it's like a furnace went off inside of me and I even start sweating. Just started the testosterone and after a few days it seems like the furnance has been turned down a little but I'm still getting the hot flashes. Hoping it will go away completely once my testosterone levels get back up to normal.
Brian
-
- February 28, 2014 at 1:41 am
Hey Brendan,
Not as long as you, but I'm also on the 5mg a day. Do you ever take 2.5 in the evenings? Endocrinologist says that's an option for me but so far I haven't felt like I needed it.
Also just found out I'm low on testosterone as well so now I'm taking that. 🙁
Anyone else with the pituitary inflamation have heat surges as a result. I'm telling you what, I get periods where it's like a furnace went off inside of me and I even start sweating. Just started the testosterone and after a few days it seems like the furnance has been turned down a little but I'm still getting the hot flashes. Hoping it will go away completely once my testosterone levels get back up to normal.
Brian
-
- March 1, 2014 at 4:21 am
That is the perfect description of that nasty pituitary headache. Like Brian said, I also got this after my third dose. The steroids cleared it up SO fast! I continue on a maintenance dose of 5 mg to present time. It is a GOOD sign though, to have such an immune response to the ipi. It means your immune system is indeed ramped up for action! Now it can go kick some melanoma to the curb! I hope you are already feeling better and that everything else checked out fine.
Tina
-
- March 1, 2014 at 4:21 am
That is the perfect description of that nasty pituitary headache. Like Brian said, I also got this after my third dose. The steroids cleared it up SO fast! I continue on a maintenance dose of 5 mg to present time. It is a GOOD sign though, to have such an immune response to the ipi. It means your immune system is indeed ramped up for action! Now it can go kick some melanoma to the curb! I hope you are already feeling better and that everything else checked out fine.
Tina
-
- March 5, 2014 at 1:41 pm
It definitely means your immune system is ramped up. However it didn't mean that it worked in my case. I got the major Ipi headache, swollen pit gland and the works and still had new growths 3 months after I finished my 4th dose of Ipi.
Good luck to you and remember that there are quite a few new treatment options that are getting great results if the Ipi doesn't work. Stay positive!
-
- March 5, 2014 at 1:41 pm
It definitely means your immune system is ramped up. However it didn't mean that it worked in my case. I got the major Ipi headache, swollen pit gland and the works and still had new growths 3 months after I finished my 4th dose of Ipi.
Good luck to you and remember that there are quite a few new treatment options that are getting great results if the Ipi doesn't work. Stay positive!
-
- March 5, 2014 at 1:41 pm
It definitely means your immune system is ramped up. However it didn't mean that it worked in my case. I got the major Ipi headache, swollen pit gland and the works and still had new growths 3 months after I finished my 4th dose of Ipi.
Good luck to you and remember that there are quite a few new treatment options that are getting great results if the Ipi doesn't work. Stay positive!
-
- March 1, 2014 at 4:21 am
That is the perfect description of that nasty pituitary headache. Like Brian said, I also got this after my third dose. The steroids cleared it up SO fast! I continue on a maintenance dose of 5 mg to present time. It is a GOOD sign though, to have such an immune response to the ipi. It means your immune system is indeed ramped up for action! Now it can go kick some melanoma to the curb! I hope you are already feeling better and that everything else checked out fine.
Tina
-
- You must be logged in to reply to this topic.