Re: I think I'm in trouble!
 

Carol Ann, Thanks....actually I found it funny. I am NOT an alarmist and I just stood there stunned for a few minutes until I figure out exactly what had happened. Then I found it rather humorous!

I suspect there WILL be more biopsies in my future given the clinical trial that I am joining. I have already decided that prior to surgery I want another MRI and biopsy of the second site. This is because in the second site, there was only ONE DCIS which usually isn't even considered cancer. You have to have THREE in the pathology for it to be considered DCIS. With my history, they counted that one as DCIS, but I will want to be very sure before surgery and will demand a second biopsy of that site before surgery. ....especially since I will have had the immunotherapy and NO ONE knows what effect immunotherapy has on DCIS. In the only other trial for immotherapy and DCIS (not the same treatment I am receiving), in 40% of the ER-, PR- HER 2 3+ DCIS there remained NO DCIS at all after SIX weeks of treatment.

So, given the ONE in the second site and the history of immunotherapy in DCIS I will demand a second biopsy of that site prior to surgery. This is the same site that just "exploded" on me!

Isn't this quite the adventure? ;-)

Re: I think I'm in trouble!
 

Undoubtedly! :)

CA

Re: I think I'm in trouble!
 

Signed my life away yesterday! 24 pages of informed consent, but I am now officially enrolled in this immunotherapy clinical trial! Now if my insurance and MD Anderson could just get on the same page, we would be set to go! I spent 4.5 hours on the phone between the two today trying to get them on the same page. Boy does this get complicated when MD Anderson is "out of network" for my insurance but will pay if part of a clinical trial.....but the paperwork is unimaginable! (not to mention time on the phone)

I'm curious, does anyone have experience with Leukine? This is the second drug given with the vaccine.....looks like it increases white blood cell count? Anyone have experience with it and know what to expect from this half of the cocktail? ;-)

Re: I think I'm in trouble!
 

As you can see from my signature, I used Leukine as my white blood cell booster instead of Neulasta during chemo. I chose and fought to do this as Leukine boosts all white cell components, most notably the dendrites. Neulasta boosts the neutrophils primarily which fight infection. I wanted dendrites as they are the scouts who find all abnormalities. Then they code it and prompt the killer T cell production. This assists in either self vaccination (my goal as I was not in a vaccine study) or assists immune response in a vaccine study.

The only thing with Leukine is the first shot, and only the first shot, can make you extremely weak. I was almost incapacitated. It never happened again and I had to have a shot a day for 10 days after every round of chemo. It was scary but again, only the first shot and it is rare side effect. You should be aware though. You may also get a couple of hives near the injection site after time goes on. This is supposedly a good thing. I was happy to get them as it shows an immune resonse which is what you are going for. If you have any other questions, let me know.

Re: I think I'm in trouble!
 

Thanks Becky! Yes, they warned me about the hives and perhaps feeling like I had the flu for 4-6 hours.

I find it particularly interesting that my white blood count is below normal......even without any treatment. This is my pretreatment levels. I wonder if my low white blood count could be a piece of why I have this cancer to begin with!

The Leukine is part of trial and given to everyone, both those in the active arm and those in the placebo arm. From my perspective even if I was in the placebo arm boosting my immune system can only be a good thing!

They are enrolling 48 patients, 32 of which will be in the active arm and 16 in the placebo arm. All will receive Leukine and the 32 will receive the vaccine as well.

I was told I am the FIRST to enroll! That would make me nervous except this vaccine has been used in women with later stage cancer and it has been highly effective for those that achieved NED. In fact, 94% remain cancer free after 10 years (I think it was 10 years but dont' hold me to that) Compared to the placebo arm where 78% remained cancer free after 5 years. (yes I think the years of study were different because they followed the active arm longer) But don't hold me to that either. I'm going off of memory here.

So, being the first to enroll doesn't worry me. It does make me wonder if it increases my odds of being in the active arm though? hmm..........only time will tell.

Re: I think I'm in trouble!
 

I've had some glitches with my insurance refusing to call MD Anderson 'in network' and of course MD Anderson wouldn't accept me even as a trial participant without "in network" status. This fighting sure does get old sometimes.

Anyway, it looks like most of the glitches are now solved and we can progress to scheduling these injections. Hopefully tomorrow the last paperwork will be agreed by the insurance and MD Anderson.

In the mean time I had an appointment with a naturopathic doctor who did her internship with the cancer center of America. Interesting discussion. And, while I can discredit her on her lipid knowledge, I'm still deciding if she knows something about naturopathic oncology. I'm on the fence and decided that I would adopt the things that I didn't think could hurt me, and reject those that are contrary to accepted medical practice.

SO, has anyone heard of rubbing caster oil and Vit A on the affected breast and then applying heat? Sounds a little wacky to me but I can't really see the harm in it? Thoughts?

Re: I think I'm in trouble!
 

I dont' think I've posted since July....mostly because I have been "processing" In July I signed the 24 page informed consent for the clinical trial in immunotherapy at the MD Anderson Cancer center, but my insurance put up a stink and I had to fly back home until they settled the payment issues. The following week the PI notified me that the trial had been put on hold due to another trial that uses the same drug. There had been a glitch in the other trial and until they sorted it out, all trials using that drug were on hold. That was in July. In September I had another MRI and this time for the first time, there was clear indication of disease progression. So, I scheduled surgery for October 5th. And, on October 5th I underwent a very very large lumpectomy. (7.2 cm of DCIS) Fortunately for me, they didn't find any indication of invasive disease. I fully expected there to be an invasive component given the size and the speed at which it had grown from June to September (2.5 cm in three months). But? So unpredictable. My closest margin was 5 mm which was fantastic. Now I am in the process of deciding if I will have radiation therapy and if so, what kind.

Re: I think I'm in trouble!
 

Glad you checked in. It is a lot to process. I hope the remainder of your treatment goes smoothly and your decisions are clear and easy for you.

Re: I think I'm in trouble!
 

I have hesitated to post this because I know that my "bumps" and decisions don't in any way compare to what many of you have and are facing.

However, I changed my mind yesterday because I realized that there may be other's "out there" who are in my boat and are silent for the same reasons I have been silent. (how dare we speak about our petty little problems in contrast to what most of you are facing?)

As some of you may know, protocol treatment for DCIS (her2 + and HER2- both) is surgery followed by radiation treatment. I was good with it until I started asking questions....and then I wasn't so "good with it." Eventually I sent the following message to my radiation oncologist asking if my assessment was correct. He agreed with my entire assessment.

I understand my expected rate of recurrence to be 30% without radiation. IF the rate of recurrence without radiation were 30% then the odds of staying disease free would be 70%.

If radiation therapy were given then the rate of recurrence should be about half or 15%. What this means is that 70% of women would remain disease free with or without radiation and 15% of women would have a recurrence with or without radiation. So, for 85% of women radiation makes no difference at all. Radiation WOULD then make a difference for the remaining 15% of women. My radiation oncologist added that if radiation is given the TIME to recurrence is often longer.



My understanding is that radiation now would mean my only option in the future was mastectomy. However, if radiation were not given now, then lumpectomy and radiation might be possible at the time of recurrence. (although I think YOU said radiation can be given now and later?) Considering that 15% of women would recur even with initial radiation, this is significant to me. Particularly given my position on retaining my breast!
I also asked about the “odds” of long term side effects such as radiation induced fibrosis. There were no odds to be given so I asked about risk factors for heightened fibrosis. Among those given to me were smoking (not a problem for me), autoimmune disorders (not a problem), heightened inflammatory response (THIS IS A PROBLEM for me), and multiple breast surgeries. I then asked if larger lumpectomies might have the same effect as multiple breast surgeries. She thought a large lumpectomy might increase the risk of fibrosis just as multiple breast surgeries do. This is a concern to me as well since my lumpectomy removed over 10 cm of tissue 7.2 cm of which contained DCIS. The radiation oncologist also added that there is a genetic disposition to fibrosis as well but we have no way of determining our risk of developing fibrosis.



There is an increased risk of invasive disease if radiation therapy is not given. (15% versus 7.5%) Certainly invasive cancer changes the entire picture and is not territory that I wish to enter! But are the negatives of radiation worth the 7.5% reduction in invasive cancer? Particularly if I am especially vigilant in follow up and surveillance? These are questions I ask myself and ultimately only I can make that decision.



After discussing all of this with my radiation oncologist I asked about my rates of dying with and without radiation treatment. Oddly enough, my rates of death are the same if I receive radiation treatment and if I don't.



I made the decision to forgo radiation treatment. For 85% of women with high grade negative HER2+ DCIS it makes no difference if they receive radiation treatment. 70% will remain cancer free and 15% will have their cancer come back (half as DCIS and half as invasive) The other 15% are the only women for whom radiation therapy will help. And, I prefer to keep my options open for therapies in the future. ....either way, my chances of dying from this disease are the same. Imagine that?


I asked my radiation oncologist WHY radiation is considered protocol considering these statistics. He said it is because the ONLY thing considered when decided on therapies is the rates of recurrence. Nothing else matters in the protocols. Quality of life doesn't matter. Period. He was in agreement with me deciding to forgo radiation treatment and he would have supported treatment as well. He truly believes either choice is correct.


I then went to another institution and received a second opinion. She was much more insistent on radiation therapy but when I asked my questions and told her what I believed to be the accurate statistics, she agreed that my information was indeed correct! She agreed with ALL the statistics. But she also said that it was her job to promote protocol.


Funny how when I started asking questions, what was once an easy decision became a much harder one. And, ultimately I chose to go against protocol.


Interesting indeed.

Re: I think I'm in trouble!
 

Glad you came to a comfortable decision. It's not ease for anyone. There is no right choice. Doctors want to throw everything at it so they can say they did all then could. No, little thought is given to cost/benefit. They tell you the risks, feed you the stats but ultimately it has to be your choice, what are you willing to live with. Many live with guilt and self doubt and Heaven forbid it does return, they face scorn from family and medical staff for not having done all they could in the beginning. There's no way to know where you fall within the statistics. Don't you just wish you had a crystal ball?

Whatever you do, do not doubt your choice. You did the research, you asked the questions, you wrestled with yourself. You made a sound, logical decision. Don't let anyone cause you to second guess that. Peace be with you.

Re: I think I'm in trouble!
 

What Tracy just said. :)

Carol Ann

Re: I think I'm in trouble!
 

What Carol Ann just said ;-)

Re: I think I'm in trouble!
 

Wow, just read this thread....thank you Tracy for your words. None of the choices we make along this journey are easy. And no one can truly know what choice they would make unless put in the exact same position (and that can never happen as we are all individuals). I have doubted some of the choices I have made but realize doubting is not productive/healthy. The only right choice is our own choice.