Oncologist says no clinical trials for me

candlegranny · 10-02-2010, 09:38 PM

I guess I am confused. I thought after treatment I would go into some kind of clinical trial to do something to " help myself" prevent return of cancer.

I have completed all the treatments doctor ordered. When i asked about clinical trials i could get into, my oncologist said you dont qualify for any. He said we gave you the standard treatment with chemo and herceptin and it worked. He asked me what would a clinical trial prove?? He said I was in remission now. I am excited about that and thankful to God, but I am so afraid of it returning i feel like i need to do something besides worry, sit and wait.
My cancer is HER 2+++ and was stage 3C and local mestastis to my neck. I had 31 nodes removed 18 were positive and i had 2 that they could not get to so that is 20 nodes with involvement. Everything I read talks positive about stage 1 and 2 but statistics show stage 3 can come back and usually does.
Any suggestions for me? it is the Her2+++ that scares me and the stage and the node involvement.

I dont have any underlying health issues of any kind and my doctor keeps telling me that is a great thing. A blessing I call it. :-)

kiwigirl · 10-02-2010, 11:11 PM

Hi I'm not sure your location but I've been traveling to Seattle for a vaccine trial that has had good results, others on this board have been on it. You have to still be on herceptin. There are no side affects (for me any way) Have a look at The Tumor Vaccine Group, at the University of Washington. They are a great group I'm half way through this treatment and feel I've now given it my best shot at not getting cancer back. All the best. Jacqui

DiDi70 · 10-03-2010, 08:31 AM

Hello Candlegranny,

I can't answer any of your questions about clinical trials, but I can tell you that statistics show that with a complete pathological response to chemotherapy and with the use of Herceptin, the chance of stage 3 cancer returning is about 15%. I hope that this makes you feel a bit better.

Didi

Debbie L. · 10-03-2010, 09:15 AM

Candlegranny,

You could search the database at clinicaltrials.gov, but I'm not sure what you'd call what you want. Post-adjuvant treatment, perhaps?

Where are you getting your treatment? If you have not already done so, it's always a good idea to get a second opinion at an NCI-designated comprehensive cancer center. They might also be more in touch with new trials. http://cancercenters.cancer.gov/canc...ters-list.html

It does seem that almost all clinical trials are for the actual adjuvant treatment, not for after adjuvant treatment ends. And for metastatic disease, of course.

I am hopeful about vaccine trials but cautious too when reading results. They will report "positive responses" when all they mean is that they were able to measure some response of the immune system that changed. It doesn't mean (necessarily) that they actually saw fewer recurrences or longer times of NED in those who had those responses. At least not so far.

You're still getting Herceptin, right? It seems to me like there are women on this list who continued Herceptin past 1 year, after some stage III diagnoses. Do I remember that correctly? Again, I think that this is an excellent time for that 2nd (or even 3rd) opinion.

If it's specifically a trial that you want (as opposed to a 2nd opinion on where to go from here), you might also try one of the websites that say they assist people with finding trials. I do not know anything about these websites (sorry) so can't actually recommend them. If you do try them (the trial-finding websites), would you report back to us about how that went?

http://www.emergingmed.com/

http://www.clinicalconnection.com/joincc.aspx?gclid=CJC-wMuJt6QCFQn6iAodShOxFg

Debbie Laxague

10-03-2010, 11:27 AM

Not sure why your doctor would say you don't qualify for a trial. My cynical view is that your onc is worried about losing you as a patient. With your profile, I would think you would qualify for many trials. Have you seen any oncs at an NCI site who may be more involved in clinical trials and thus more aware of trials you would qualify for? It may be very helpful to you.

BonnieR · 10-03-2010, 02:46 PM

I don't see why a physician would deny someone a trial if they qualified. Perhaps you simply do not fit any of the criteria at the moment. Maybe I am naive, but isn't a "trial" just that? Not specfically a treatment but a blind test of a proceedure or medication?
Your question sounds more like you are wishing for additional treatment as a form of insurance. And I dont blame you for feeling that way.

Jackie07 · 10-03-2010, 03:49 PM

Doctors have their egos.

My breast surgeon's (surgical oncologist) first reaction to my recurrence was "You are my first patient that have recurred!" [So it was 'my' fault?

] The medical oncologist continues to act as if I'm hypochondriac - trying to assure me that I'm 'cured' [and I should fall into the 'trap' the second time?

]

My family doctor had no clue about my 'family' history - can't blame him, all of my family members live overseas except the ones by marriage... But shouldn't he have at least brought it up? Oh, no, he couldn't. He didn't know that I'd had a long brain surgery 20 years ago and a GKRS for recurrence 2 years before I became his patient - do they really read the long medical history questionnaire I fill out each time?]

Since they won't take any active role in my health care (none of my cancer diagnosis was found by their 'clinical exams', lab work, or mammograms [they had seen things, but dismissed it as 'scar tissue' and told me everything looked 'fine'.]), I had to take initiative to undergo prophylactic procedure (the genetic counselor at the hospital did/said nothing about my test result except charting my family history - I could have done that myself!)

Thanks to this wonderful site and caring members (Marcia helped me getting my genetic result 'corrected' by a genetic expert - I had mistaken the upper case of 'i' for the lower case of 'L') I was able to find some research articles regarding my genome and my risk (possible HNPCC based on family history - figured that one out after my 2nd Brother had undergone colon cancer surgery and chemotherapy) Ever since my prophylactic hysterectomy/oophorectomy, I've not had dry lips (caused by 'low grade fever' - a sign of inflammation somewhere. My doctor could never have detected it because the cold water from the water fountain by his office always gave me a very low temperature reading - and he never questioned why my temperature had always been way low...[I drank the water because I was thirsty...because of the temperature that had resulted in very dry and chapped lips - but he just thought I was agitated and short of sleep (which was actually caused by the growing tumors inside of my brain

])

Yes, we have to be our own adavocate. Check out the links Debbie provided and seek out the clinical trials that you qualify. It is true that what you've had so far is like on the control arm (traditional chemo+Herceptin treatment) of a clinical trial. But he shouldn't have discouraged you from seeking further information/treatment.

Chelee · 10-04-2010, 02:02 AM

CG,
Congratulations on the complete response..that's great. However what your feeling right now is very normal. When we are first dx with bc it seems like full speed ahead of endless appts! It's just so over whelming. Then when your done they send you on your way and you feel like your doing nothing to keep your cancer from coming back. I think most of us have felt that way...I did!

I think it's very normal for you to be looking for clinical trials. It's good that you want to stay informed and vigilant. I do agree with Debbie that this would be a great time for a 2nd and even 3rd opinion. (Go outside your network/group.) There are lots of trials...which ones you might fit into I don't know? But there are several good clinical trial sites. One I use you can put all your information in & it will give you results that match your dx. It's called "Breast Cancer Trials.org". Here's the link and see if it turns anything up for you in your area.

https://www.breastcancertrials.org/bct_nation/home.seam?cid=5057

That's interesting that your onc would tell you matter of fact that there are no trials for you. I really highly suggest seeking 2nd opinions...this is a perfect time for that. Also what is your onc's doing to moniter you now that your done with trt? How often does he want to see you now? I'm so happy to see you are doing all the right things! It's good you are researching, learning all you can now. But do remember some really don't recur. We have quite a few on this board alone that haven't & are doing well.

Keep us updated.

Chelee

'lizbeth · 10-04-2010, 07:33 PM

CandleGranny,

I'm so happy for you that you finished your chemotherapy. When are you completed with Herceptin?

There are several vaccine trials for women who have recently completed primary treatment. SandraGa & I are participating in the Walter Reed vaccine trial. The Mayo clinic has another vaccine trial. I'm sure more are available. You've got to enroll in these within 3 to 6 months after finishing your treatment. You don't have to rely on your doctor to get you enrolled. You can make arrangements on your own. Expect to have to travel to participation. I flew from San Diego to San Antonio every 3-4 weeks for 6 visits. Now I'm in the booster program - every 6 months.

Don't sit around and wait and see. I highly encourage you to do something. Even participation in an exercise clinical trial or meditation clinical trial has shown benefit to participants.

I'm part of a Phase II trial for the GPII peptide vaccine to see if it is effective. I'm thrilled to be able to be involved. SandraGA is in the AE37 arm. We'd be happy to answer questions about our experience.

Starting searching the clinical trial sites, don't wait on your doctor and think about second opinions.