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Clinical trial?????

tasha_111's picture
tasha_111
Posts: 2041
Joined: Oct 2008

I saw my rad onco this afternoon and she is recommending me for clinical trial of cyber-knife.  One shot rad treatment.  Anyone had exp of this?  Cool Tash xxxx

1surfermom's picture
1surfermom
Posts: 259
Joined: Mar 2009

Hi Tash

I have not had experience with the cyber knife. I did however participate in a clinical trial for a chemo protocol. I felt that if it didn't benefit me directly it would hopefully benefit someone. Just be prepared to sign a mountain of paperwork  it can be pretty overwhelming. I remember feeling very stressed when I was going through the paperwork with the clinical trail coordinator.This was right after   I was dx'd so I was a wreak anyway. At my cancer center the clinical trial participants had some extra perks, I remember being able to get appointments easier if I name dropped the trial. Maybe I'm not that altruistic lol. Good luck with whatever you decide. Love Surf

camul's picture
camul
Posts: 2017
Joined: Dec 2010

If you gst more info I would love to hear about it. I am starting my 3rd round of rads Monday. She was telling me about Quadramet which is an internal rads, my boys both read up on it and do not want me to do it. It can kill the prod of platelets and lower your white count to he point of getting super infections. I dont think I have many treatment options now but they think the possible se are too great.
Would love to know more about this trial though.
Carol

VickiSam's picture
VickiSam
Posts: 8229
Joined: Aug 2009

Have you decided or participate in the clincial trial?  Rad's started,  how are you doing with them?  I am thinking about you - sending positive thoughts and prayers in your direction.

I envision you with your boxing gloves on - walking thru the Oncology room kicking asssss, and ready to take on the World.

 

Vicki Sam

tasha_111's picture
tasha_111
Posts: 2041
Joined: Oct 2008

Nor started yet, scared stiff, but will know more after friday,,, onco meet and mri,,, fingers crossed hun?

tasha_111's picture
tasha_111
Posts: 2041
Joined: Oct 2008

Nor started yet, scared stiff, but will know more after friday,,, onco meet and mri,,, fingers crossed hun?

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

Wishing you the best oucome, Tasha.  I thik thre is some misconception amongst the general public that participating in a clinical trial means you've volunteered to be a "guinea pig".  I don't believe that is the case and I know that if one is in a clinical trial, you do get really top notch attention.  This is a list of 10 things about clinical trials from my cancer center:  I think it's all good things.   I actually participated in a clinical trial for my endometrial cancer, but all I had to do is give them my uterus . . . . .amd I don't remember what they used it for. 

  1. By participating in a cancer clinical trial, you have access to the newest and most advanced treatments, before they are widely available.
  2. In a clinical trial, you are cared for by leading physicians in the field of cancer research.
  3. Before a new treatment is tested in a clinical trial, it undergoes extensive laboratory testing, often for many years. Only the most promising new treatments make it to clinical trials.
  4. Cancer patients decide to participate in clinical trials for many reasons, usually because they hope for a cure, a longer lifespan, an improved quality of life or to benefit other cancer patients in the future.
  5. By California law, cancer clinical trials are nearly always covered by insurance.
  6. Cancer clinical trials are governed by protocols, or plans, that spell out exactly what will happen and why. Protocols are carefully reviewed to make sure they safeguard patients and have scientific merit. Before a patient consents to participate in a clinical trial, he or she receives extensive information about the potential risks and benefits of the trial.
  7. If it becomes clear during a clinical trial that one treatment is better than another, the trial is stopped so that all patients receive the treatment. The patients in the trial are the first to benefit.
  8. Placebos are almost never used in cancer clinical trials. No patient goes without treatment, where a treatment is available.
  9. In a clinical trial, you receive close monitoring of your health care and any side effects.
  10. You may leave a clinical trial at any time, and choose instead to talk with your physician about other treatment options.
JuJuBeez's picture
JuJuBeez
Posts: 332
Joined: Apr 2010

In June 2010, I participated in the B39 trial. It was 5 day/week rads vs 2x day for 5 days rads. I did the 2x day for 5 day rads, no chemo. The study was to prove that the partial-breast rads for 5 days is as effective in the 30-50 age range, than the 5 day week for 6-7 weeks. My oncotype score was 12, so I didn't do chemo. I am thrilled to have been able to participate in a trial. I told them to take and study whatever they needed because I want to help end this beast. I filled out a questionnaire with about every question imaginable, plus they took blood to 'study'. I do have several risk factors for breast cancer. I started my period young (11), I had my first child late (36), I didn't breast feed, I worked several years on 3rd shift, I have been over 200 lbs for most of the last 10 years, I've used hormone birth control in the past, and my vit D level is in the single digits.

I would recommend the partial-breast rads to anyone who qualifies for it. I am large busted (DDD), and I had no burning or peeling from the rads. It did look a little pink, then tanned, and was warm to the touch.  Because of the direct beam, there is less chance for tissue damage to the heart and lung. It is a stronger dose of radiation. By the end of the week I was exhausted, and even more so the following week. It is very doable.

Good luck with your decision and treatment. Please let us know how it worked out for you. These trials are very important for the next generation, my daughter and her friends.

 

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