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S1216 Trial-Lupron/TAK700--Began Today 2-11-14

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Posted 2/11/2014 10:56 PM (GMT 0)
Had a meeting with my Onco and the trial coordinator today.

Received my first supply of the TAK700. Dosage is 3 (100mg) pills, twice a day at 12 hour intervals. I will be taking the drug alone until Monday of next week.

On Monday I go in for the Lupron injection. My shot will be the 22.5, 3 month shot. My follow ups will be monthly for the first 6 months and then the schedule will change to longer terms.

Was given a calendar diary to keep of the daily pills and any side effects that are noticed as they occur.

I am really excited about beginning this phase of my journey. My Onco mentioned another patient that is on it and has already seen great response. My Onco is very high on the TAK and says he has seen data indicating that the response has been very good.

I hope it works well for me. I am beginning this with a PSA of 92.5 and a testosterone level of 439.

I will document for the record here as things progress. I hope that this info may prove valuable to others that are forced to venture in to the world of HT.

Sonny
Posted 2/11/2014 11:01 PM (GMT 0)
Outstanding, Sonny! I hope it gives you great results. Congratulations on getting into the trial, and even getting the arm you probably wanted.

Don't fear the Lupron. You may feel a little bruise sensation at the injection site for a day or so, but that's about it usually. The other effects come on quite slowly. You'll do fine with it. I just had my T checked and it was at 10, so Lupron can really hammer it down.

I liked what someone else said today - It's an odyssey really, a series of journeys!

All the best, brother!
Posted 2/11/2014 11:15 PM (GMT 0)
Sonny, the lupron is not that bad especially in the lower dose. I hope you have great results from the this treatment.

Best to you,
Don
Posted 2/12/2014 1:21 AM (GMT 0)
Redwing and Don, thanks for the words of encouragement. I am most pleased that the Lupron shot will be the 3 month variety.

From a little research I had done and conversations with folks actually on the drug, it appears that the 3 month SEs are a little more tolerable than those that accompany the 4 or 6 month shot. At least that is what I am hoping for.

I am in a very good and positive place about all of this. I am a firm believer in the thought that a positive attitude will carry me a long way towards dealing with any SEs that come my way. Of course that is just theory and yet to be proven anyway.

Thanks again for the kind words,

Sonny
Posted 2/12/2014 1:55 AM (GMT 0)
Wishing you all the best in this stage of your journey.
Every day is a bonus as well as a blessing -to share with others you love - that never changes.

hugs,
Bronson
Posted 2/12/2014 4:06 PM (GMT 0)
We will be watching your progress with great interest. My husband has been on Casodex for 7 weeks and Lupron (22.5mg) for 3 with not a single side effect (yet). Also 5 mg Cialis just in case which is working very well :). Reading the small print on the Lupron insert reveals the incidence of side effects--your odds are pretty good with hot flashes at 55% being the most common.

Curious if there are any TAK700 known SEs or is it these kind of trials that will establish the side effects data? Did they give you any literature on the TAK700?

Good luck.
Posted 2/12/2014 5:36 PM (GMT 0)
Sonny,

You will do well.   I had both Lupron and Eligard 6 month shots.   Really couldn't tell the side effects of one from the other.    My med onc and uro both told me that I would welcome half of many injections over the three year period and I bought their story.   My T plummeted to about 3 in 90 days or less and has stayed very low since.   Since my last shot should be wearing out, now I am hoping for the reversal, but it is all about gravity.....faster to fall than climb.

Posted 2/12/2014 5:43 PM (GMT 0)
Hi Sonny 3,
Peterdisablerd referred me to this post.
Is this your 1st course of Ht?
and where is the trial you are enrolled in Thanks
Lin
Posted 2/12/2014 6:06 PM (GMT 0)
Sonya:

Good luck. I will be watching this thread very carefully!

I was told that the HT SE would not kick in for almost 3 months, and that's what happened. I did start getting SE from Casodex earlier (boobs and boob pain). The Lupron SE for me were amazingly subtle. Eventually it did become significant, but you don't need to worry about that for many months.

Hey, Cheryl and I do hope to see you when we go to Florida in mid-May.

Mel

Posted 2/12/2014 6:24 PM (GMT 0)
The only immediate side effect from my first Lupron shot was a oddly circular black bruise on my bum.

If you remember your Treasure Island you will remember the Black Spot as a portent of bad things to come.

My reaction, as I recall: youtu.be/8ILcZj61QiI
Posted 2/12/2014 6:42 PM (GMT 0)
Sonny,

Good luck.

I have been on Lupron since July 2008.

Sam
Posted 2/12/2014 8:08 PM (GMT 0)
Once again, thank you all for your encouragement and support. I have taken 2 doses of the TAK so far, at 9pm last night and again at 9am this morning. The doses have been taken with and without food. Nothing new yet, too soon I am sure. But nothing is a good thing for me.

Haliday, they gave me a bunch of literature on the trial and the SEs of all of the drugs. For the most part they seem to mirror each other. The biggest difference is the <20% group and the >20% group. The TAK 700 has a much shorter list in the >20% group than the Casodex.

TAK700 Likely SE (>20%)
Nausea
Vomiting
Fatigue

Casodex Likely SE (>20%)
General Pain
Back Pain
Loss of strength or energy
Pelvic Pain
Breast Pain
Breast Enlargement
Hot Flashes
Sweating
Constipation
Fatigue

LSil (Lin), I am participating in the trial through what used to be MD Anderson of Orlando. The first of the year they became UF Health and Cancer Center. They are now part of the University of Florida Cancer Center and Medical Team.

Here is a link to the trial data:clinicaltrials.gov/show/NCT01809691

Apparently it is being offered at a number of institutions around the country. All of the contact data is in there, if you need to give someone a call.

I am really encouraged by many of you reporting that the Lupron SEs don't hit for a while. I would like to get through the GFMPH gathering before they kick in. That would certainly be a bonus. Although I must admit, I do have the "Sonya" shirts ready just in case.

Mel we look forward to seeing you in May.

Sonny
Posted 2/13/2014 12:22 AM (GMT 0)
Sonya,

I would have to refer to your other post of all the pre-treatments to see if you had a DEXA bone density test done to measure for osteoporosis and establish a baseline to measure future DEXA's against.

Since you are doing monthly follow ups the first 6 months anyway, may want to schedule a monthly Xgeva shot to prevent so-called skeletal events like fractures and spinal compression that Lupron makes us more susceptible to.

I can't remember when the Lupron Side effects kicked in (maybe a Lupron side effect on memory) but happy to say in my case 11 months later hot flashes are thing of the past. Was advised to think of the hot flashes as gentle reminders that the Lupron is on the job.

If it ever stops raining on the west side of Florida, I will call you about re-scheduling a cross-state trip to your side of FL before GFMPH so I can lug some pool chairs over to lend to you.

LupronJim
Posted 2/13/2014 12:22 AM (GMT 0)
Sonny,
Congratulations on getting into the TAK700 arm. Good luck on the HT SEs. They will tend to be subtle at first and then will probably get cranking in time for your summer in Florida. See you soon at your place.
SC
Posted 2/13/2014 1:12 AM (GMT 0)
My memory of the first hot flash was about 65 days after my first Eligard shot and it about knocked me over. For the first 6 months they would come on suddenly and leave just as quick. Now after three years they are like wearing a dark blue pair of slacks and wetting myself......I feel all warm, but no one notices. You will do fine, but you will not need to run the pool heater.
Posted 2/13/2014 3:40 PM (GMT 0)
Jim, yes I had a bone density scan as part of the baseline studies before beginning the drugs. At this point there was no discussion about adding anything for bones. I will pose the question when I go in for the Lupron shot next week. And yes it is raining over on the East coast too.

SC, look forward to you being here for GFMPH.

JNF, I guess I can look at the flashes as a cost saving measure. Reduction of the electrical bill by not having to run the pool heater is all right. But increased cost of turning down the AC thermostat will probably offset any savings.

Sonny
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