How are the IPI warriors?

Hi Sue,

 I hope all the symptoms means you're a responder. I was on Ipi from 3/08- 10/08 and I'm NED. My WBC is still slightly low. I had some of the side effects you are having such as rash, headaches and a low grade temperature. If your headaches become severe (like nothing helps to get rid of them) and if they continue on a daily basis (I had them for 2 weks) urge your doctor to do a brain MRI. That's how my hypophysitis ( swelling of the pituitary gland) was discovered.

God Bless,

 Jim M.

Hi Sue,

 I hope all the symptoms means you're a responder. I was on Ipi from 3/08- 10/08 and I'm NED. My WBC is still slightly low. I had some of the side effects you are having such as rash, headaches and a low grade temperature. If your headaches become severe (like nothing helps to get rid of them) and if they continue on a daily basis (I had them for 2 weks) urge your doctor to do a brain MRI. That's how my hypophysitis ( swelling of the pituitary gland) was discovered.

God Bless,

 Jim M.

Sue,

Will be thinking of you during your scan the next few days! 

Sending hugs,

Linda

Sue,

Will be thinking of you during your scan the next few days! 

Sending hugs,

Linda

Hi Sue, I'll be joining you for my third treatment on October 26th!!  You sound like you might be a great responder!! So far very little side effects, but my doctor did notice shrinkage on my 100 or more (no exaggeration) of cutaneous tumors on my right leg, last time…so I'm saying a prayer that it's working too….Jim M, saw your note…I remember you were the first person to tell me to check out ipi but at that point only option I had was a 50-50 (and believe me I would never win a lottery) so I took interferon..glad I am on the compassionate ipi trial now!!!  Val 

Hi Sue, I'll be joining you for my third treatment on October 26th!!  You sound like you might be a great responder!! So far very little side effects, but my doctor did notice shrinkage on my 100 or more (no exaggeration) of cutaneous tumors on my right leg, last time…so I'm saying a prayer that it's working too….Jim M, saw your note…I remember you were the first person to tell me to check out ipi but at that point only option I had was a 50-50 (and believe me I would never win a lottery) so I took interferon..glad I am on the compassionate ipi trial now!!!  Val 

Hi Sue,

I'm going for my 3rd round of Ipi on Nov 4, and like Val, I have not experienced any side effects to speak of. Good luck on your go at round 3. Let's all kick mel's butt together!

Hugs

Sharyn

Stage IV

Hi Sue,

I'm going for my 3rd round of Ipi on Nov 4, and like Val, I have not experienced any side effects to speak of. Good luck on your go at round 3. Let's all kick mel's butt together!

Hugs

Sharyn

Stage IV

Hi Sue,

Hope your 6 week scans are ok.  As I mentioned in a previous post, some increase in tumor size is not uncommon, apparently due to inflammatory response to the Ipi.  The criteria to remain in our trial are no more that 25% aggregate increase (total of all tumors), with no new ones.  It is not possible to distinguish between a small amount of growth from disease progression amd inflammatory response, and the 25% figure is somewhat arbitrary.  I go for my 12 weeks scans at MDA next week. 

Side effects may change somewhat over time, but more a matter of degree usually.  I have developed more rash from the 4th infusion, as well as more itching, but nothing intolerable.  My one visible tumor on my left leg has become slightly smaller (measured weekly) and softer since my 4th treatment (but not before the last treatment), so I am somewhat encouraged by  that. 

Remember, responses can vary considerably in degree and timing, so each of us has a different story to tell that may not be an indicator of what you, or any other Ipi recipient, may experience.  Sending positive thoughts your way.

Best Wishes,

Jim

Hi Sue,

Hope your 6 week scans are ok.  As I mentioned in a previous post, some increase in tumor size is not uncommon, apparently due to inflammatory response to the Ipi.  The criteria to remain in our trial are no more that 25% aggregate increase (total of all tumors), with no new ones.  It is not possible to distinguish between a small amount of growth from disease progression amd inflammatory response, and the 25% figure is somewhat arbitrary.  I go for my 12 weeks scans at MDA next week. 

Side effects may change somewhat over time, but more a matter of degree usually.  I have developed more rash from the 4th infusion, as well as more itching, but nothing intolerable.  My one visible tumor on my left leg has become slightly smaller (measured weekly) and softer since my 4th treatment (but not before the last treatment), so I am somewhat encouraged by  that. 

Remember, responses can vary considerably in degree and timing, so each of us has a different story to tell that may not be an indicator of what you, or any other Ipi recipient, may experience.  Sending positive thoughts your way.

Best Wishes,

Jim