IPI question

Posted By
8/11/2010 10:45pm
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Replies: 7

I've heard you don't know if one is respondng to IPI for three months.  Buddy had one tumor shrink and the others that were measured increase in size.  He's had no side effects, the fatigue was there already due to craniology and WBR--He has numerous tumors - liver, lungs, spleen and the brain mets.  Dr. said he is anemic, will have blood transfusion next week.  Also, if he has any more imbalance while walking, he will need MRI - said he could get gamma knife and still continue with IPI- do you think they would do a gamma knife to brain mets if he has more than 3?  Is there a pill or something for blood - H&H is 11 - going south quickly, will transfuse at 9 - has blood work Sunday.  Is there anything to do to prevent a seizure that we are not doing now? 

Sharyn - (8/12/2010 - 8:37am)

I had 4 brain mets treated in the one session of gamma. Best of luck to Buddy.



Stage IV

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

SusanE - (8/12/2010 - 9:35am)

Hi Nancy. Jerry gets procrit when he is under 10 for his red count. Here they won't transfuse unless he is under 8. He is also taking slow release iron to see is we can improve that part of his blood work. He takes the iron 3 times a day.

Take care,

Susan wife of Jerry

Sharon in Reno - (8/12/2010 - 7:49pm)

The only thing I know of to stop a sizure is steroids but his doctor should know that. As soon as my brain MRI come in my doctor called me and told me to immediately take 3 dex's. I already had the RX on hand, doc order RX before the brain MRI. he said he wanted me to have them....just in case....Good Luck & God Bless love, Sharon in Reno Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

James from Sydney - (8/12/2010 - 7:53pm)

Hi Nancy

our son had completed his 2nd Ipi treatment back in Nov 2008 his Mets started to grow i believe this was due to inflammation from Immune response from Ippi not disease progression. I am only passing this on as our Docs did not keep  treating, back then not every Doc realised this was  Ippi related.

As far as Gamma do it if Buddy is up for it, it is his decision. The more stable you can get him the more time you have for treatment to show response.

best wishes


Kevin from Atlanta - (8/12/2010 - 8:13pm)

How many Ipi treatments has Buddy recieved?

Knutes Pam - (8/13/2010 - 11:05am)

Knute had low blood counts after radiation of his lung tumor in April.  Knut is on an anti seizure med currently-- Keppra  it was given after ER visit with what they think was an optical seizure narrowing of vision to a tunnel and "swirling" in the peripheral vision.  He has had nothing like it since surgery in July.  Is Buddy suffering from seizures currently?   If not I guess I would watch for any signs and use that as a guide to what might be happening in the brain.  

Great to hear of no major side effects!


BGL530830 - (8/18/2010 - 3:27pm)

My husband just finished three rounds of Ipi.  He also developed Anemia after he started the Ipi.  His Hemoglobin became dangerously low.  He has had two blood transfusions and just finshed 5 rounds of iron infusions.  DO you know what kind of anemia your loved one has?  i wonder if my husband developed autoimmune anemia because of the ipi revving up his immune system.  

what other side effects did he have?  my husband has frequent fevers, rash, weakness, fatigue, pain and the anemia.  he also developed a pleural effusion.  we will find out in 2 weeks when he gets scanned.  i hope it worked.