Starting IPI/Temodar trial at MDA

Glad you are in the trial. The travel back and forth can be difficult and expensive. While there and if you'll contact the Social Services office at MDA, they offer the equivalent of Angel Flight (they use another name) where private pilots will fly you back and forth to Houston from Atlanta at no cost to you. Obviously you have to schedule well in advance of your trip so that pilots and planes can be scheduled. I have a friend who goes to MDA and she is able rarely to get onto the corporate plane to go there so I gave her the info to check at MDA for their Angel Flight travel. Best wishes.

I have another friend who is in the IPI trial in South Carolina, just over the Georgia line at Seneca. She only receives and infusion of IPI every 3 weeks no Temodar. Don't know if this would be an option for you to go there to receive your infusion and then just take your Temodar pills. Would save you some trips to MDA except for critical meetings with your docs there.

Best wishes.

Glad you are in the trial. The travel back and forth can be difficult and expensive. While there and if you'll contact the Social Services office at MDA, they offer the equivalent of Angel Flight (they use another name) where private pilots will fly you back and forth to Houston from Atlanta at no cost to you. Obviously you have to schedule well in advance of your trip so that pilots and planes can be scheduled. I have a friend who goes to MDA and she is able rarely to get onto the corporate plane to go there so I gave her the info to check at MDA for their Angel Flight travel. Best wishes.

I have another friend who is in the IPI trial in South Carolina, just over the Georgia line at Seneca. She only receives and infusion of IPI every 3 weeks no Temodar. Don't know if this would be an option for you to go there to receive your infusion and then just take your Temodar pills. Would save you some trips to MDA except for critical meetings with your docs there.

Best wishes.

Hi Sue,

I am in this Trial as is "Mel in DC" (David) who post here also.  I just had my 2nd Ipi infusion 2 days ago (Tuesday) and David has his today (I think).  As you know, the Temodar is in pill form – I take 4 – 100 mg pills before bedtime (around 10 pm for me), after taking a Zofran (an anti nausea medication) tablet 30 minutes beforehand.  There are a laundry list of possible side effects that Dr. Hwu has or will go over with you when you sign the Consent Agreement (I see Dr. Wen Jen Hwo – no relation).  You can also ask the Study Nurse questions about side effects.  The possible Temodar side effects are well known and documented, but the Ipi side effects are characterized differently as simply possible (or something like that).

I asked questions going over these two lists about what Dr. Hwu's personal experience has been with both.  Her experience is that common Ipi symptoms include rash, mouth sores, diharrea (offset by the Temodar causing constipation), and white patches on the skin (hair can turn white as well).  Contrary to what at least one Ipi receiver has said on here, the white hair may or may not happen – if it does happen, that does not necessarily mean that you are responding to the Ipi, and conversely that if you do not have hair turning white that you are not responding.  In short, the side effects are mild.  I have experienced none so far.  Dr. Hwu also told me that side effects will usually get less severe with each treatment if there are any to begin with.

I have experienced mild constipation and occasional mild headaches from the Temodar.  I take Tylenol, but nothing for constipation so far.  Temodar is a 3rd generation Chemotherapy and has far fewer side effects compared to the old infused variety used in the past.  Nausea is the most common side effect, but it is controlled beautifully by the Zofran.  Hair loss is apparently pretty uncommon with Temodar – very little if at all.  My experience may not be the same as yours, David's, or anyone else's, but I want to offer some reassurance that the side effects have been very minor in my case and hopefully yours as well.

You will want to give your local Oncologist and Primary Physican's contact information to MDA (including email address, so be sure to get that information before you go to Houston) so that if there are any significan side effects, that they can be addressed locally (in Atlanta).  Let your Docs know what you are doing, if you haven't already,and hopefully they will be happy to assist you if you need anything.  You will get weekly blood draws in Atlanta from on of your Docs there or a Quest Diagnostics office (I use a Quest office located a mile from my home), and tests will be done with results Faxed to MDA.  They arer looking for low white blood cell counts, which can happen with Ipi.  If that happens, it can be controlled fairly easily by medication.

If your experience is anything like mine, you will be pleasantly surprised how few side effects you will have, especially compared to IL2.  I have read on this board and elsewhere quite a bit about IL2 treatment, and it sounds like a real doozie regarding side effects.  The Ipi and Temodar is nothing like that, in my experience.  I hope this helps you, Sue.  Be positive – you are getting both a very promising treatment as well as the outstanding care that MDA offers patients – that place is amazing!  Dr. Hwu is exceptionally competent, as are his staff.  You cannot get better care anywhere.  Let me (us) know if you have more questions, but please don't re-run that "IL2 Movie" in your head – it is not like that at all.  One final thing – no alcohol is allowed, which has not been an issue for me.  I will have a glass of champagne when I am NED 🙂

Hope that helps.  Keep posting and best wishes to you!

Jim in Denver

P.S. Travel has not been a major issue for me – approx. 2 hour flight from Denver on Soutwest into Hobby Airport – much closer than the other airport (Bush Intercontinental) to MDA, and cost around $250.   Houston traffic is awful, but then again Atlanta's is no picnic either, right?   Lots of hotel options – check out the Rotary House/Marriot at MDA for your next trip because you need at least 3 weeks lead time to book a room there – ultra convenient (right next to MDA, free parking) and cost around $110/nt.  Many other hotels nearby – ask for a "Medical Center" rate and call the property directly, not an 800 number.  I have used the Holiday Inn and they have suites for $140/nt, rooms for $120 – but there are many options you can find on Hotels.com or other sites.  Some hotels have shuttle buses, but I have rented a car and parked on one of the 2 ramps flanking the main MDA building, which cost up to $15/day, for convenience.  Our insurance covers travel expenses and part of the hotel cost – we are very fortunate to have that covered.

Hi Sue,

I am in this Trial as is "Mel in DC" (David) who post here also.  I just had my 2nd Ipi infusion 2 days ago (Tuesday) and David has his today (I think).  As you know, the Temodar is in pill form – I take 4 – 100 mg pills before bedtime (around 10 pm for me), after taking a Zofran (an anti nausea medication) tablet 30 minutes beforehand.  There are a laundry list of possible side effects that Dr. Hwu has or will go over with you when you sign the Consent Agreement (I see Dr. Wen Jen Hwo – no relation).  You can also ask the Study Nurse questions about side effects.  The possible Temodar side effects are well known and documented, but the Ipi side effects are characterized differently as simply possible (or something like that).

I asked questions going over these two lists about what Dr. Hwu's personal experience has been with both.  Her experience is that common Ipi symptoms include rash, mouth sores, diharrea (offset by the Temodar causing constipation), and white patches on the skin (hair can turn white as well).  Contrary to what at least one Ipi receiver has said on here, the white hair may or may not happen – if it does happen, that does not necessarily mean that you are responding to the Ipi, and conversely that if you do not have hair turning white that you are not responding.  In short, the side effects are mild.  I have experienced none so far.  Dr. Hwu also told me that side effects will usually get less severe with each treatment if there are any to begin with.

I have experienced mild constipation and occasional mild headaches from the Temodar.  I take Tylenol, but nothing for constipation so far.  Temodar is a 3rd generation Chemotherapy and has far fewer side effects compared to the old infused variety used in the past.  Nausea is the most common side effect, but it is controlled beautifully by the Zofran.  Hair loss is apparently pretty uncommon with Temodar – very little if at all.  My experience may not be the same as yours, David's, or anyone else's, but I want to offer some reassurance that the side effects have been very minor in my case and hopefully yours as well.

You will want to give your local Oncologist and Primary Physican's contact information to MDA (including email address, so be sure to get that information before you go to Houston) so that if there are any significan side effects, that they can be addressed locally (in Atlanta).  Let your Docs know what you are doing, if you haven't already,and hopefully they will be happy to assist you if you need anything.  You will get weekly blood draws in Atlanta from on of your Docs there or a Quest Diagnostics office (I use a Quest office located a mile from my home), and tests will be done with results Faxed to MDA.  They arer looking for low white blood cell counts, which can happen with Ipi.  If that happens, it can be controlled fairly easily by medication.

If your experience is anything like mine, you will be pleasantly surprised how few side effects you will have, especially compared to IL2.  I have read on this board and elsewhere quite a bit about IL2 treatment, and it sounds like a real doozie regarding side effects.  The Ipi and Temodar is nothing like that, in my experience.  I hope this helps you, Sue.  Be positive – you are getting both a very promising treatment as well as the outstanding care that MDA offers patients – that place is amazing!  Dr. Hwu is exceptionally competent, as are his staff.  You cannot get better care anywhere.  Let me (us) know if you have more questions, but please don't re-run that "IL2 Movie" in your head – it is not like that at all.  One final thing – no alcohol is allowed, which has not been an issue for me.  I will have a glass of champagne when I am NED 🙂

Hope that helps.  Keep posting and best wishes to you!

Jim in Denver

P.S. Travel has not been a major issue for me – approx. 2 hour flight from Denver on Soutwest into Hobby Airport – much closer than the other airport (Bush Intercontinental) to MDA, and cost around $250.   Houston traffic is awful, but then again Atlanta's is no picnic either, right?   Lots of hotel options – check out the Rotary House/Marriot at MDA for your next trip because you need at least 3 weeks lead time to book a room there – ultra convenient (right next to MDA, free parking) and cost around $110/nt.  Many other hotels nearby – ask for a "Medical Center" rate and call the property directly, not an 800 number.  I have used the Holiday Inn and they have suites for $140/nt, rooms for $120 – but there are many options you can find on Hotels.com or other sites.  Some hotels have shuttle buses, but I have rented a car and parked on one of the 2 ramps flanking the main MDA building, which cost up to $15/day, for convenience.  Our insurance covers travel expenses and part of the hotel cost – we are very fortunate to have that covered.

I live near Atlanta but have to do Ipi treatments in Knoxville. Atlanta had no trials at the time. I finished my fourth treatment on Monday. I have felt very limited side effects a little rash and that is about it. In regards to Temodar, most people just have fatgue.

I took Temodar for 24 months but I was on six different chemos at the same time.

If you need someone while in Atlanta, send me an e-mail and I will give you my number. Unfortunitly I cannot drive

I live near Atlanta but have to do Ipi treatments in Knoxville. Atlanta had no trials at the time. I finished my fourth treatment on Monday. I have felt very limited side effects a little rash and that is about it. In regards to Temodar, most people just have fatgue.

I took Temodar for 24 months but I was on six different chemos at the same time.

If you need someone while in Atlanta, send me an e-mail and I will give you my number. Unfortunitly I cannot drive