› Forums › General Melanoma Community › Ipilimumab During Brain Radiation? (SRS or WBR)
- This topic has 6 replies, 3 voices, and was last updated 13 years, 9 months ago by
Jan in OC.
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- March 9, 2011 at 1:20 am
Hello! This is my first post amongst all you people of such beautiful energy! Surely, the first of many, considering how grateful I am for all of your inspiring, educational, and deeply connecting words I have been reading over the past six months. What took me so long to finally post, right?
Hello! This is my first post amongst all you people of such beautiful energy! Surely, the first of many, considering how grateful I am for all of your inspiring, educational, and deeply connecting words I have been reading over the past six months. What took me so long to finally post, right?
Dad is the patient, and his stats are below. I have a bucket load of questions, but I’ll start with this: Can Dad be treated with Ipi while he's receiving brain radiation treatment, without any waiting period in between or requirement to stop one before starting the other?
We realize that often there is a requested waiting period between radiation treatment ending and Ipi starting according to clinical trial protocols, but since he would be receiving it based on compassionate use, are the clinics required to treat him in accordance with those protocols? It clearly makes sense for clinical trial purposes to have the grace period, but it seems to me that for compassionate use, the waiting has significantly different relevance.
Anyone out there been treated with Ipi infusions while undergoing SRS or WBR, or at least not been required to wait the 14 to 28 day waiting period? Is this the doctor’s decision, or are the clinics under restriction from a compassionate use rule system?
Dad: 81 years old, relatively healthy prior to melanoma, aside from low-grade non-hodgkins lymphoma; stage 4, mets to liver first, then brain; Kaiser patient, temador for one month, little-to-no effect on liver lesions, blood platelets fell to risky level, (platelets eventually increased to safe level); blood clots in lung, as byproduct of melanoma; no prior history of cardiovascular or pulmonary challenges; pursuing compassionate use Ipi, failed B-Raf mutation test; most likely beginning brain radiation treatment this week; hopefully SRS, but possibly WBR.
Thank you! And I'm really looking forward to contributing to this amazingly supportive community!
CZ
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- March 9, 2011 at 1:31 am
Here's the link for the compasionate use posting:
Note that there is NO waiting period between radiation and ipi. However there may be other exclusions or criteria that have to be met.
Please call or email any one of the trial centers or the BMS contact. You will find them very helpful. Also, it appears that the FDA approval for IPI could occur within the next month at that time SOME of the criteria will be relaxed.
Jerry from Cape Cod
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- March 9, 2011 at 1:31 am
Here's the link for the compasionate use posting:
Note that there is NO waiting period between radiation and ipi. However there may be other exclusions or criteria that have to be met.
Please call or email any one of the trial centers or the BMS contact. You will find them very helpful. Also, it appears that the FDA approval for IPI could occur within the next month at that time SOME of the criteria will be relaxed.
Jerry from Cape Cod
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- March 10, 2011 at 12:23 pm
Hi CZ,
I agree with Jerry. I don't think your Dad would have to wait. I'm in a compassionate use ipi trial in Montreal, responding well from the neck down. I did one 12-week round from Sept – Nov, then took the required 12 weeks off, and I was supposed to resume ipi for round 2 last week. However, some new brain lesions were discovered, and I had to have more SRS and a craniotomy (Feb 21), and some follow-up SRS this coming Wed (Mar 16). I am hoping to be back on ipi by March 24, that is, if my CT scan (tomorrow) comes back favourable. Hope that helps. All the best to your Dad. It's a great advantage that he is so healthy otherwise.
Hugs
Sharyn
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- March 10, 2011 at 12:23 pm
Hi CZ,
I agree with Jerry. I don't think your Dad would have to wait. I'm in a compassionate use ipi trial in Montreal, responding well from the neck down. I did one 12-week round from Sept – Nov, then took the required 12 weeks off, and I was supposed to resume ipi for round 2 last week. However, some new brain lesions were discovered, and I had to have more SRS and a craniotomy (Feb 21), and some follow-up SRS this coming Wed (Mar 16). I am hoping to be back on ipi by March 24, that is, if my CT scan (tomorrow) comes back favourable. Hope that helps. All the best to your Dad. It's a great advantage that he is so healthy otherwise.
Hugs
Sharyn
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- March 10, 2011 at 5:28 pm
Hi, Just wanted to let you know that we just got SRS for my husband's brain mets last Thursday and yesterday he had his third IPI infusion. There was no waiting (other than for the MRI and planning) and we had no problems with doing brain radiation while on compassionate use IPI at UCLA.
I think the waiting period is usually when you go from one trial to another, depends on the protocol.
Jan, wife to Dirk, stage 4
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- March 10, 2011 at 5:28 pm
Hi, Just wanted to let you know that we just got SRS for my husband's brain mets last Thursday and yesterday he had his third IPI infusion. There was no waiting (other than for the MRI and planning) and we had no problems with doing brain radiation while on compassionate use IPI at UCLA.
I think the waiting period is usually when you go from one trial to another, depends on the protocol.
Jan, wife to Dirk, stage 4
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