Anyone enrolled in IPI/Temodar trial at MDA in Houston?

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8/5/2010 6:18pm
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Replies: 11

Spoke with Dr. Hwu at MDA yesterday regarding the IPI/Temodar trial.  If you are enrolled in this trial at MDA,  I would be interested in finding out how you are tolerating side effects and also handling travel if you don't live in Houston?

Thanks for your help.

Sue 

Stage IV, lung mets

Hi Sue

Check out...

7/31/2010
9:30pm
 
and
 

Jim in Denver

8/1/2010

7:28pm

 

... Val

Live Laugh Love
Nothing is worth more than this day!

Hi Sue,

I am a patient of Dr. Wen Jen Hwu and began the Ipi/Temador trial two days ago.  I had the Ipi infusion on Tuesday, and have taken the Temador for 3 days now - at night, so I just took my 3rd dose.  Taking Zofran (an anit nausea drug that is prescribed as part of the trial) before the Temador is very effctive for me.  I have had no side effects (yet) from either Ipi or Temador, but I understand that can change over time.  So there may be more significant side effects in the future, but none so far.  Dave starts tomorrow, so you can ask later about any issues, although we both will post here.

As for travel, I have flown on Southwest into Hobby so I don't have a long drive to the Medical Center area of Houston.  I live in Denver, so it is about a 2 hour flight for me.  There are many good hotel options in the area.  One tip is to call the hotel directly when booking and ask for a discount for being a patient at MD Anderson.  I did not know about that one until checking in at the Holiday Inn and the front desk person asked if I was a patient, then offered me a discount - very nice.  You can find rates for around $100 - 125, although also higher and lower.  I have made 2 trips to Houston so far - the first for 3 days and this week for 2 days.  I go back again in 3 weeks and will probably fly in and out the same day.  I will only get the Ipi infustion, and that takes 90 minutes, but thater is also another 60 minutes on saline solution afterwards.

Hope that helps!  Best wishes........

Jim in Denver

 

In case you don't knoiw, MDA can arrange for you to take advantage of Angel Flight ( private pilots fly you to and from MDA at no cost to you). Contact Patient Services to check this out. Obviously you need to do this well in avance of your appt at MDA, probably a week or so to have everything arranged for you.

I also took Angel Flight for free. I also got my Hotel rooms for free, even a fancy smacy Japanese room at $450.00 a night. Check with either your MDA's social worker or your doctor'soffice lesion/ social worker person, keep calling around till you find them, no need to pay for things,  we have enough to think about. Good Luck & God Bless. love, Sharon in Reno Stage IV

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

Sharon:

I thought the flights and accommodations were available for patients who cannot afford all of this.  I guess we don't know   if we can either.  We have not heard whether our insurance will cover or not.  Thanks for your input.  I read all of your posts.  Feel like I know you!!!!

Take care.

 

Sue in Hotlanta

 

Hi Sue,

You don't have to be broke, you just have to have cancer (sucks)....so  if you keep paying for all these services your own self then you'll soon be broke. Dont let that happen check out all cancer groups this is what they do, let them pay for everything, they are great, then save you money for fun stuff.  Give 'em a call, they'll been waiting for ya. love, Sharon in Reno Stage IV......then have ya some fun!!

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

Hello Sue,

I am starting today so I wil post any issues. I feel very lucky to be eligible to be on this trial. I was diagnosed a year ago and just graduated to stage IV two weeks ago and none of the treatments felt right, if I would have excepted any of the treatment they recommended it would have made me uneligible for this trial. I have been watching everyone and researching over the past year and this looks the most promising for me and hopefully the entire Mel community.

Best wishes,

David

Fully rely on GOD & try not to ruin today by worrying about tomorrow

Hi Sue I started the Ipi /temodar tial about four weeks ago. You posted 8-1 Still neediany feedback?

It's agood life if you don't weaken--- borrowed from a friend

Jeff:

We are in Florida this week for a some R&R before I start treatment.  I checked out Moffitt in Tampa last week and they have an overflow of patients for the IPI compassionate trial so they are sending everyone to MDAnderson in Orlando.  Dr. Weber at Moffitt suggested I go to MDA in Houston.  I am also being checked for BRAF D & K.  I do not have the 600E.

My husband and I were very impressed with MDA.  It is an amazing place.  The doc I met with is Patrick Hwu...liked him and his staff.  So after vacation I have to get the ball rolling to start the trial.  I am very concerned about the side effects since I have a very sensitive system and will turn 60 in December. I had 2 treatments of IL-2 but did not tolerate very well due to the blood pressure dropping.  I also had VATS surgery in June to remove 2 spots on my lung.  A couple of days out of the hospital my lung collapsed and I was back in.  I am concerned about care once we are home in case of emergencies.  We live south of Atlanta.  My oncologist is at Emory. which is 40 miles away. 

What type of side effects do you have and where do you live?  How are you handling the travel back and forth?  Where are you staying in Houston?

Thanks for your help.

Sue

 

 

 

Hi Sue,

I agree that MDA is an amazing place.  Dr. Hwu can communicate with your Doc at Emory if you give receptionist at the Melanoma Clinic his/her contact information, including email.  I am sure your Atlanta Doc will have heard of or even met Dr. Hwu since he is well known as both researcher and practitioner. Your concerns about potential copmplications are understandable, but you might consider giving yourself an extra day in Houston after treatment to reduce the chances of an immediate problem.  Your local Onc Doc is ther to help you with any issues that may arise when you are not in Houston, but you should communicate with Him/her about your treatment plan before starting at MDA (at least that is what I did).  Ipi is not associated with any respiratory issues that i am aware of, but you should discuss this with Dr. Hwu.  You will need to have weekly blood work on the trial, drawn either at Emory or a Quest Lab near you, then anaylzed and faxed to MDA.

My side effects from my first treatnent have been minimal from both Ipi and Temador - mild headaches and mild constipation. That can change over time, however, so vigilance is required.  Hope that helps.

Best Wishes,

Jim in Denver

 

Sue, a friend is enrolled in the IPI trial in Senaca, SC through the doctors at Emory, David Lawson. She drives up, just over the Georgia line, for her treatments. You might check with Emory to see if you can get into this trial since it is "local".