IPI & Temador @ MD Anderson

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7/31/2010 9:30pm
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Replies: 12

Hey everyone,

I went for two month scans last week at MD and was upstaged to stage 4. Dr Bedekian gave me my options and I am going for the IPI and Temador they have started. Luckily my insurance is paying for it with a $100 copay on the Temador. I will have a IV for 90 minutes for the IPI and take the Temador one pill a day for four days at home. And repeat every three weeks. They will do scans at six weeks (two doses) to see if it is working and to go further or stop if no responce. 

I would love any thoughts, concerns or advice for these drugs and their side effects.

Thank You,

David

King - (7/31/2010 - 9:41pm)

 Hi David,

I've never received either one of those drugs but many on this board have.  I'm not sure how many people have taken them at the same time though.  Is this a trial?  As you probably know, Ipi is not yet approved by the FDA but many think it will be soon.  Could you share a little more info...where is the mets that upgraded you to Stage IV?  Many experience tumor growth with Ipi prior to showing a shrinkage response.

Hopefully, you'll get lots of helpful responses.  The new format of this Board was just this week so many of us are still getting used to it.

Stay Strong

King

Stage IV 7/05 Liver mets

Hey King,

Yes it is a trial that will take 64 patients. My mets are 4 sub centimeter in the lungs and one subcutanous around 1 cm on the lower back.

David

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

I am glad to hear they are starting to combine Ipi with other drugs.

The main side effect from Temador is fatigue. Ipi skin rashes and diareha(sp)

 

ValinMtl - (7/31/2010 - 9:57pm)

Hi David

I can offer a little bit of inof on temodar..started first dosage July 19th, I could have chosen dicarbazine at no cost due to medicare in Quebec, however, temodar is much easier on the system so with my husband's retirement package I was able to go on it for 6 months at $4,000/month...90% being paid by his package we will soak up the rest.  If this is unsuccessful next step will be the 'ipi' trial.

So far so good. After taking 4 pills a day for five days, I had few side effects although I did take an anti nausea pill Sandoz...first day was so easy thought I would not take the anti nausea pill...big mistake TAKE IT.  Also I decided against the laxative and went to the cottage for the week...big regret..TAKE the laxative pill too that they should prescribe!  The day after my 5-day treatment I had a fever of 102.5..went to bed with two Tylenol and lots of water and within 2 hours it was down.  Right now a week later, I'm feeling quite fatigued, sleep a lot but am able to function..blood test on Tuesday, will see what's happening. Temodar is certainly doable and is not as rough as interferon was by a long shot!! Thank goodness. Best wishes on your treatment. Val

Live Laugh Love
Nothing is worth more than this day!

I was offered Ipi just last wk by my onc. I dont have the details yet but Ithink I'll be on the same schedukle, sot every 3 wks for 4 times, then scans and then go from there. I  have to do the gamet of scans first. I'm strongly leaning towards going with Ipi. It sounding like my best option at this point I need systemic treatment (again). I cant comment on the temador side effects. I had it mixed in with my BioChemo cocktail last yr so I dont kow what drugs were doing what. I do know 8 months later I go a brain met.. Sending you positive vibes for a compete response....kick butt!!...love, Sharon in Reno, Stage IV

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

 I am entering this trial on Tuesday, 10/3.  I will post above with more info.  Let's compare notes going forward, if you would like.  Best wishes....

 

Jim in Denver

 

 

Went to MDA last week for scans and they found new metastesis on my lungs, liver, and spine.  I also had lots of fluid on my left lung so they pulled off a liter and sent it for analysis.  Got the word today that the fluid containde Melanoma cells.  Dr. Holmsi told us last week that he would put me in the IPI/Temador trial if the results came back positive for cancer so I guess I will be starting this soon. 

I am glad to find this site so we can get some information and updates on the trial.  I am a school teacher so I will just have to deal with the side effects because I sure can't affor to retire yet.

I will go down with this ship, I won't cry my eyes out and surrender. There'll be no white flag above my door. I will live!

Nebr78 - (8/9/2010 - 12:58am)

I am Stage IV melanoma and have taken Temodar for 3 months.  Not too many side effects at all. Fatigue.  Some pain at first but Pain Pills took care of that.  Melanoma kept growing I guess.   I took CT Scan and report came back that all spots were same size. I questions about a specific spot, Lymph Node by right armpit.  They couldn't answer it at first then 2 days later after Oncologist questioned them, the lymph node had grown 30%. I really don't think the Radiologist or whoever measured the thing the first time.  I am going to do something about it but don't know what yet.  Am waiting for approval of IPI and may take that.  Although I have very serious heart disease.  Good Luck to you.

There are many sites aound the country where Ipi is available right now on a "Compassionate Use" basis, so you do not have to wait until it is FDA approved.  You might want to look into that idea, so here is a link:

http://clinicaltrials.gov/ct2/show/NCT00495066

Best Wishes,

Jim in Denver

Thanks for the replies.  We are going back to MDA tomorrow and having blood work and EKG, the last two things we need for the trial.  Hopefully Dr. Holmsi will have some answers for us when we get there and I hope to start the trial as soon as possible.  I am encouraged to read that the side effects are doable since I am in a classroom everyday.  My kids (students) are all so supportive, I get 15-20 texts a day letting me know they are there for me if I need them.

Tomorrow is my 62 birthday and I will spend it getting information at MDA.  I am excited about that.  Just before my 60th birthday I was griping about turning 60 and making it known to anyone who would sit still and listen.  5 days before my 60th I had a major heart attack.  After that I was thrilled to turn 60, so having this at 62 isn't so bad.

Karen and I pray for all of you daily....even though we don't know all your names, God does.

Dick

I will go down with this ship, I won't cry my eyes out and surrender. There'll be no white flag above my door. I will live!

Thanks for the replies.  We are going back to MDA tomorrow and having blood work and EKG, the last two things we need for the trial.  Hopefully Dr. Holmsi will have some answers for us when we get there and I hope to start the trial as soon as possible.  I am encouraged to read that the side effects are doable since I am in a classroom everyday.  My kids (students) are all so supportive, I get 15-20 texts a day letting me know they are there for me if I need them.

Tomorrow is my 62 birthday and I will spend it getting information at MDA.  I am excited about that.  Just before my 60th birthday I was griping about turning 60 and making it known to anyone who would sit still and listen.  5 days before my 60th I had a major heart attack.  After that I was thrilled to turn 60, so having this at 62 isn't so bad.

Karen and I pray for all of you daily....even though we don't know all your names, God does.

Dick

I will go down with this ship, I won't cry my eyes out and surrender. There'll be no white flag above my door. I will live!

Having a Denver catheter put in tomorrow.  The fluid in my lung is building up and we need to keep it drained off.  I was upgraded to Stage IV Metastatic Melanoma.  Tuesday we are having a stress test to see if the heart is strong enough to get in the trial.  My cardiologist signed off but evidently that is not good enough.

Keep the faith friends,

Dick

I will go down with this ship, I won't cry my eyes out and surrender. There'll be no white flag above my door. I will live!