Clinical Trial or Tarceva

• By cuddles53
• Posted October 15, 2009 at 11:28 pm
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I would get some opinions from the people at the hospital on this one. it is a tough decision. Phase one is where they test the dosing amount, right? so this could be dangerous. I don't think you should put yourself in anymore danger than you already are in, You have cancer already. I do understand wanting to try a clinical trial I am going to be trying something that is experimental myself, but not at a phase 1 level, this is the one right after animal testing. Are you sure you want to take this chance? Ask many others before doing this, you are much too young.
God bless you in whatever your decision is. Sandy

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• By lbp08
• Posted October 16, 2009 at 12:12 am
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Salty - I am not the patient, only the caregiver on this journey. My youngest sister and her husband both have worked at two hospitals under,now four different oncologists, both are involved in the area of clinic trials. Not with LC - their areas were HIV/AIDS and Multiple Myeloma - both adult and peds. I know that from what she has learned and what she has shared with me over the years - we would not want my mother (the LC patient) to be involved in a phase I trial.
I realize that there have to be people willing and able to be in the trials in order for new meds to make it to the market....maybe I should rephrase that and say only as the very last resort would we consider a Phase I trial.
What all do you know about the proposed trial?
Bridget

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• By easterbaby
• Posted October 16, 2009 at 5:01 am
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I agree with both replies so far. My sister's onc told her if it ever got to the point where trials was an option then it would be to get her in phase 2 or 3 with 3 being preferrable.

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• By beckylynn
• Posted October 16, 2009 at 5:25 am
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Salty,
Did your dr. do a mutation test to say Tarceva would be good for you or he just feels that it has such good response from others that it would be good for you.

After reading all the wonderful things happening with folks on this site who are on Tarceva, I would lean more toward that.

Let us know what you decide to do.
Becky :)

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• By chessie-too
• Posted October 16, 2009 at 5:44 am
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I've been on tarceva almost 3 years and I am so glad I decided to go with it. Never had any IV chemo and don't want any.
There are some side effects with tarceva but you know up front what to expect and can prepare for them.

As for the trial, don't think I would want to go where something is so untried. But that's just my opinion. To me that would be like playing Russian roulette.

Good luck with your decision and God Bless whatever you decide to do.

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• By cards7up
• Posted October 16, 2009 at 6:43 am
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Personally, I wouldn't do a trial unless it was a last resort. Try the Tarceva and see how the first phase goes and maybe you can try the 2nd or 3rd phase if the Tarceva doesn't work for you. Take care, JC

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• By curepoint
• Posted October 16, 2009 at 8:20 am
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I know that great feeling regarding the break from chemotherapy and it's not to be discounted. I agree with the poster above that you continue with the Tarceva,determine it's effectiveness and hold the trials to future consideration.

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• By Barb267
• Posted October 16, 2009 at 6:58 pm
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Salty,
I am with everyone else, with two small boys, I wouldn't want to be in a phase 1 trial.

Blessings,
Barb

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• By terisa
• Posted October 16, 2009 at 11:55 pm
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well... I dont know what the best is for you, but I can share my story. i recently got re-staged to IV after doing carbo/taxol and radiation for my first round. This second round I was determined to find a trial if possible, since options later down the road, as I understand it, change per what you do early on. I went across the state, as my onc could not find one here in Spokane, to portland and to Fred hutch and swedish w/ dr west in Seattle, with conciderations of doing it every 3wks. I got proactive, whereas my first round I was in such a blurr I trusted what I was told and everything was expedited I didnt have time to research, nordid I want to scare myself to the extreme at the time. After those 2nd opinions and weighing, and doing a couple weeks research, my brother actually found another onc that was offering a trial here in my town. I met with him, learned that he does the genetic testing thru Response Genetics in LA (his explainations of why to not use rationaltheraputics isanother topic), got mine done, and found out why the previous treatment didnt stick, that Alimta was what would work and not the tarceva htat another dr wanted me to do. So one has to wonder... I am on Alimta (pematrexed) every 3wks and a 2nd phase BIBF 1120 trial pills 2x's per day. 7wks now and Ct Scans shows it has reduced the tumor sizes. I am excited that both this onc and the trial sponsor approved the items my natropath recommended.
As I understand it... the trials are particular about waht you have done prior, or it may eliminate you from the trial. phase 1 could be more complicated, though it still has to be safe, you just may have more side effects. Mine were pretty strong in that I was soo tired that I wanted off the trial, but the onc got my counteractiv drugs balanced out and I stuck with it. Trials you can quit any time you should want, they dont hold you in contract.
I personally wanted to know that I tried something abouve and beyond the "standard of treatment" and perhaps help others by use of my study.
You need to do what feels right for yourself. Right up to the last minute of them giving me the drugs, I was still afraid, and partly cuz it was a new dr, and not sure about how my biopsy said it was poorly differentiated, and my prior onc was recommending just standard treatment... I just had to trust... that for some reason, my brother had found this new dr and that I was led down this new path.
I wish you the best of luck.

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• By frenchy
• Posted October 17, 2009 at 4:25 am
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I thought long and hard about a clinical trial I was offered..it was a Stage 1, after reading all the side effects I opted for a stage 3 trial. I was taken off the trial because my tumor doubled in size in just 6 weeks, of course I did not know if I got the placebo or real thing. To say the least, I was very disappointed but glad I opted for the latter stage trial. I hope whatever you decide works out for you, best wishes.

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• By TinaIrena
• Posted October 17, 2009 at 8:21 am
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Garret, I think you should go with something that is already known to work first and leave the clinical trials as a last resort. Good luck with whatever you decide to do.
Tina

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• By BeBeReader
• Posted October 17, 2009 at 11:34 am
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Not a doctor, just a lay person, but why be a guinea pig on a Phase 1 trial when you can try an FDA approved drug that has been through all the trials
and has been effective with many people? (unless there is something very particular to your situation that makes Tarceva seem a real long shot, even more of one than the clinical trial).

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• By terisa
• Posted October 17, 2009 at 12:59 pm
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You probably know how the trials work in that they are usually given in combo with a chemo - at least this was my experience. I guess I write this for all others that havent tried the search.
I was given 3 chemo type options and 2 without chemo, at all 3 of my 2nd opinions.
1) Taxotere (standard of care for my 2nd round)
2) Alimta (pematrexed)
3) Tarceva
4) possibly Avastin
5) No Chemo
All of these options will be available to me down the road, is what I was told.

It then became about what trials were available with the different chemos and where. Then about whether I fit the requirements to take the trial. When going thru figuring out if I was eligible, they started finding a couple more trials out there.
Then it became about what phase that trial was in, and my choice of what kind of side effects I was willing to put up with, first with the chemo that went with the trial and then with the phase of the trial. The percentages of chance of getting those side effects, etc.
I knew if I chose one trial, that I needed to be comfortable with the chemo that I was getting with it first off, as that is what I would stay with for as long as needed (my onc would like to do a yr since its working, but everyone is different). Then, I new I would probably have some side effects from the trial, since I had been in remission for 6mths and my body would be sensitive before it got used to the drugs. and we know that phase 1 trials are about figuring out what doses work well and so there will be a period of figuring that out.
I was fortunate to be eligible for a phase 2, BIBF1120 (does similar effects as a vascular disruptive drug) by a company in germany that is studying trials in several countries.
Would I do a phase 1 trial? harder decision, but if it was with a chemo I felt comfortable with first, (I tested to respond best to Alimta, not tarceva) I would then try the trial for a month, knowing that I could stop it if need be. In my mind I needed to know that I had tried everything available to me.

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• By Tworosescd
• Posted October 17, 2009 at 2:32 pm
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Hi,
Earlier this year when I had a particularly bad scan I contacted the Cancer Center of America in Arizona. In speaking with one of the doctors online, he told me that a clinical rial should be the last resort. As long as there are other options, they should be used. Best wishes on either decision. God bless

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• By tlm2005
• Posted October 17, 2009 at 5:38 pm
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Garrett,
Whatever you choose, I wish you the very best...my thoughts and prayers are with you and your family. Let me know how it goes and what you decide.
God bless,
Tracey

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• By caden
• Posted October 17, 2009 at 7:12 pm
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I was offered a phase 3 clinical trial and jumped at the chance. I figured phase 3 was pretty safe and I wanted to make sure I had done everything I possibly could and not look back and say what if? It was not a blind trial and I cried when they called to tell me I would not be getting the trial drug but would be part of the control group. Guess what? They stopped the trial because people on the trial drug are dying and they are investigating it. Would I do a phase 1 trial? No way. I know people need to do them but it won't be me! Good luck with whatever decision you make.
Cathy

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• By saltypenguin
• Posted October 19, 2009 at 8:49 pm
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Thank you for all your input. I have decided to go with the Tarceva. After I posted this I did a lot of research and much of it places clinical trials as a last resort or something to do after all other options.

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• By bizezgrrrl
• Posted October 20, 2009 at 9:18 am
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Tarceva is at its most effective when it is a first line treatment in people with the EGFR mutation. In people without the mutation, it sometimes can be effective as a later treatment option.

I am 41-year-old mom, a non-smoker, stage IV without the mutation. Aside from the cancer, of which I have virtually no symptoms, I am very healthy. If I had the mutation, I would have done Tarceva in a heartbeat. Since I do not, I decided to participate in a clinical trial. The only way to kick this cancer is to continue researching and testing new agents.

I was in a phase 1 trial as my first line treatment last spring. I was monitored very closely and pulled from it when it became too toxic after three months. While it wasn't the miracle drug I'd hoped it would be, it kept things pretty stable.

I continue to feel great and have been on a 21-day cycle of Alimta, which for me has very mild side effects. I'll continue as long as I am stable, but will absolutely consider another clinical study when my cancer shows some progression.

I am chomping at the bit to be tested for some of the newer mutations they're researching treatment for, but my onc assures me we don't want to do anything until the Alimta stops working.

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• By saltypenguin
• Posted October 22, 2009 at 10:27 pm
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I took my first Tarceva Pill 1 hour ago. My Doctor did not think the EFGR test is worth the time since he would give me Tarceva either way.

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• By radar212
• Posted October 23, 2009 at 11:18 am
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My onc said the same about the mutation testing. We would know if the Tarceva was working before we would get the mutation results. I am on Day 10 and the fluid in my upper right lobe has lessened. The coughing is better. Can't say much for the rash but I'll take it if it is working. Good luck and let us know how it is going.

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