Am I getting the most aggressive treatment

[tulips]

I have metastic breast cancer with heavy liver involvement and bone (right femur). I am due to start a clinical trial next week. Is this route (clinical trials) the only option for stage IV cancer or is there proven chemo that will work without experimenting? I am not being offered anything else and want to know if I should be. Please help.

[tulips]

Kass, Wow! What a survivor. Thanks for the info and the encouragement. I, too, would like to know where you went in Germany and who is doing the trial in Boston. Best of luck to you as you progress. If anyone can do it, you sure can. Tulips

[nam]

Hi Kass,

Can you tell me where you went in Germany, and also who is doing the trial in Boston?

Thanks,

Nam
nam.***@****

[Kassy500]

Hi Tulips,
  I had a lump for 32 years in my right breast. A Dr.decided to  removed in 4-'92. Was told it was benign, but it started growing rapidly within days after surgery.  3 yrs later I had another biopsy done, and it says cancer.  I had HepC too, and didn't think I would survive conventional treatment, so I tried every alternative that sounded like it would help. By Aug '01,(9 years later) I had a 7"tumor in my breast with a thick line of lumps leading from the tumor, under arm pit and a few inches up my under arm. I also had 22 bone mets.  I knew the tumor was about to breach the skin so I decided to go to a clinic in Germany, that used Mistletoe from the apple tree and SSR treatments. Spent 5 weeks in the clinic and brought 6 months of treatment home. By Dec. '01 my tumor was 1/2 the size and my cancer markers were up to 2000. I knew there was a lot of die-off being counted in the marker test. By 4-'02, my tumor was almost gone, and 6 of my bone mets were gone.  The rest of the bone lesions were markedly smaller.  Now the tumor is gone.  My cancer markers are down to 34, but still going up to 50 and back down.  The Mistletoe was injected directly into the tumor and when the tumor got too small to inject it safely, I started taking the Mistletoe in an IV at home.  Had to get a friend to help since it isn't recognized treatment. I am doing great, and now face the problem of going off the pain medication.
I have no more pain, and I'm really frightened about trying to stop taking 75mc Duragesic Patch and 4mg Dilaudid injection. But I will get past this too.
  I've been living with this disease for 11 years now. Nothing worked like the Mistletoe.  They are doing a trial on it in Boston right now.  Keep looking, there are new treatments out there waiting for us to find them.  
   If I can help, let me know.
       Keep smiling,
         Kass

[heidiho]

I, too, share your negative experience for the sake of clincal trials, which is probably the only negative experience I've had with my months of treatment at a major teaching university / medical center.  I was dx'd with Stage IIB BC 6 weeks ago.  Although I expected the diagnosis after a really bad mammo, there's nothing really quite like getting the official work, i.e., "Yes, your biopsy did show breast cancer", after which my onco left the room & came in with his supervisor, who immediately proceeded to: Quickly go through the motions of examining me, questioned me re. my personal financial situation (how was I supporting myself), & then asked me to join a clinical trial re. How the Practice of Yoga Could Induce Relaxation in BC Patients.  I was totally shocked, offended and infuriated at his lack of sensitivity re. my diagnosis only several minutes ago.  At my next post-surgery visit, the same onco again called in his supervising MD, who printed out a sheet re. my percentage-wise prognosis for 10-year survival & then telling my that probably if I jointed in ANOTHER trial, in which a computer would decide my 1st line of chemo treatment, maybe he could up the odds to another 6% or so. (Declined, took standard chemo protocol.)  I informed his secy that I did not wish to participate in any trials; but I did have to interview with him as a newly-diagnosed patient that next week, at which time he again proposed a new trial, which I reluctantly agreed to (a little less risky) bec. I wanted to get on ahead with my treatment.  He described the trial at length, but only skimmed over my actual proposed chemo treatment. Although no one held a gun to my head, I did feel I was pressured into entering the trial, at a weak, vulnerable time, and which may or may not help
me, and may harm me. I think the use of trials is compromising actual patient care in a big way--this issue needs to be addressed as to its NEGATIVE impact, as well as possible benefits.

[omacar]

If your doctor does not seem to want to discuss treatment  then maybe you should get a new doctor.  It is important for you and he to be part of a team  handling your case.  Communication is very important.  You need to be an informed patient  and be allowed to ask questions when needed and receive appropriate answers.  Good luck to you!!  hugs

[CCF-RN,MSN-JS]

Dear tulips, Goals of treatment for metastatic breast cancer are control of the disease and symptoms.  There are approved therapies that are available that may accomplish these goals.  

Part of the process of informed consent to participate in a clinical trial is being informed of what other treatment options are available to you outside of the clinical trial.  The risks and benefits of these therapies, and the risks and benefits of the trial need to be discussed in order for you to make an informed decision.  Then you can, if you still are interested, give your informed consent to participate in the clinical trial.
Since you have not been offered anything else, I'd advise to ask this question of your doctor, "what are my treatment alternatives besides this clinical trial?"