Any survivors with experience with chemo cell-death assays?

NKCell

Hello,

This is my first time posting. I  am Stage IV with bone mets, have been on anti-estrogen therapy since my diagnosis a little more than a year ago, as recommended by doctors I consulted at Sloan-Kettering, Dana Farber, St. Vincents, NYU, and Weill-Cornell. But the cancer has grown and there is now lymph node involvement. My oncologist at NYU recommended Xeloda, a relatively nontoxic chemotherapy. However, I also consulted a Dr. William Grace (affiliated with Lenox Hill) for a second opinion, and he is an outlier. He disapproves of my treatment so far and recommends treatment based on results of chemosensitivity assays (cell-death assays, not the molecular growth assays, he is quick to emphasize) from the Rational Therapeutics lab founded by Dr. Robert Nagourney. He says I can be cured (whereas mainstream oncology considers Stage IV incurable) and wants to biopsy breast tumor & give me systemic chemo based on the assay, and then either a mastectomy or (if I don't want a mastectomy), chemo to my mammary and axillary arteries and radiation. He says he's never had a patient recurrence with these assays and that it's unethical not to use them. He claims no financial ties to the assay tests. So I'm wondering if anyone on this board has received chemotherapy treatment based on cell-death (apoptosis) assays, and what your assessment is based on personal experience. Thank you in advance.

bak94

Very interesting, I have not heard of it. I am triple neg and don't know if that is why. Sounds like he is very leading edge. I hope you get some answers here!

lrr4993

Is this where they test the tumor after biopsy to see what chemo it responds to? If so, I was told these are not considered reliable because the chemo works differently in you body than outside of it. Personally, I find it incredible that there is no way to do this sort of test with reliability. At the very least, it seems more reliable than the "who knows if it is working" approach used for post surgery chemo. I would be curious to learn more.

NKCell

Yes, it is where they test biopsied tumor. My doctors at NYU and Dana Farber think there is not enough evidence that it is worthwhile but Dr. Grace says that the assays most doctors are familiar with are the unreliable molecular cell-growth assays, whereas the cell-death (apoptosis) assays from Rational Therapeutics are far more reliable. They are expensive and not covered so I hope to make an informed decision!

NKCell

The tests are applicable to triple-negative patients so that wouldn't be why you haven't heard of it. It's not mainstream. Most oncologists say the evidence isn't there, but a small group of oncologist and other doctors swear by it. The first doctor I heard about it from was Pamela Yee at the Center for Health and Healing (NY)--not an oncologist. She referred me to Dr. Grace.

 The lab website is here: http://www.rational-t.com/

toomuch

NKCell-I wish that I had sent my tumor to Rational Therapuetics before they encased it in parafin but I didn't know the tests existed. GITANE is active on the Stage III and ILC threads and her chemo was based on the results from Rational Therapuetics. If she doesn't post on this thread you can send her a PM (private message).You can find many of her posts on the thread for pleomorphic ILC. I hope this helps. Best of luck making your decisions.

1Athena1

This is fascinating.

If what you are discussing is the same as chemosensitivity testing, you folks might be interested in reading some posts by deenahon the Comp/Alt. threads. She is double neg, Her2+ stage IV and she writes that they extracted a small part of her lung and did assays before the tumour had been corrupted by all the substances they put on it. That way, they were able to determine which chemos her cancer would or would not respond to.

http://community.breastcancer.org/forum/79/topic/765299?page=55

Gitane

I had the test done by Rational Therapeutics on my residual breast tumor cells after 4 rounds of AC.  By that time the tumor cells were resistant to everything they tested except AC.  It was still responding to that at an "intermediate" response level, so I had 2 more rounds of AC.  Had the testing not been done, the plan was for 12 weekly rounds of Taxol.  The testing showed the cells were resistant to Taxanes, so I'm pretty sure I was saved from a probably useless chemo and saved the Taxane SE's.  They test chemo combinations as well as individual chemos.  

I think this is a very useful test.  There is a bad side to it, too, knowing that after 4 rounds of AC my tumor cells had developed resistance to almost everything available.  That's a bit hard to take.   G. 

NKCell

Thank you so much Gitane. I wonder why your tumor cells would develop resistance to drugs other than AC when that was the only drug you were taking? That doesn't seem to make sense! How does your doctor/the lab explain it?

 Also, have you met others who have used the Rational Therapeutics assays?

 Again, thanks immeasurably for sharing.

deenah

I used RT. I just had my surgery 2 weeks ago Friday and started chemo Friday. You can read the long version of my story in the link Athena, but I'll post the Clift notes version here. I was diagnoses with bc march 2010 (stage IIIC). I did a/c followed by taxotere/herceptin. PET/CT was clear after chemo. I had bilateral mx with levels 1-2 axilary node dissection in September. Path showed 3cm original tumor (itnhad shrunk a little) and 18/51 + nodes. Radiation in nov-dec. PET/CT showed lung mets and cancer in left supraclavicular nodes in Jan this year. Added tykerb to herceptin. PET/CT showed lungs stable and cancer gone from nodes. I had another PET/CT 2 months later and had progression in lungs. My UCSF onc and my local onc wanted me to try xeloda/herceptin next. I opted to do dr. Nagourney's assay before deciding on my next treatment. I had surgery 2 weeks ago. They removed 4 tumors that were on my lower left lobe. They need at least 1 gram of tissuento do the testing. They got 3.7 grams. They tested everything and the kitchen sink. My cancer was resistant to xeloda/herceptin, so I would have been adding 100% toxicity with no benefit AND wasting another 2 months without this testing. Instead, my cancer was extremely sensitive to Navelbine/herceptin. I had been being treated with herceptin/tykerb though, so I decided to continue on the tykerb as well. Well scan again in 6 weeks. Time will tell if this is going to work! The key to this assay is that there be a large enough sample (a biopsy is not enough), and the sample must be still alivenwhen tested. In my case, I had the surgery across the street from rational therapeutics and the cancer wax still attached to my lung tissue and it's blood supply. It is the closest thing you can do short of testing drugs inside your body, I am very glad I did this. I only wish I had known about it before my mx so I could have avoided lung surgery. Good luck with your decision. As far as cost, some insurances are starting to pay for this testing. It costs $4,000 if you have to pay out of pocket, and they require payment in full up front. But, there is foundation that helps people who want to do the testing, but cannot afford it. That info is on their website. Dr. Nagourney is passionate about what he does. He did a phone consult with us before we went down there to explain what he does, which we really appreciated. His offices are very modest and old. Nothing fancy at all. He is very obviously not doing what he does for money.

Gitane

My oncologist explained that it was common for cells to develop resistance to chemo after treatment.  He also said my cells may have had de novo resistance and having had AC was not the issue.  Since I did not have sensitivity testing done before treatment I will never know the answer to this.  Why this resistance develops and why it develops to other chemos I don't know.  That would be a good question to ask someone who knows a lot more than I do.  If you get answers to this I'd appreciate it if you would share them with me.

I have never met anyone else who used Rational Therapeutics, but I know that many, many people do.  To be honest, I am not active at all in the local breast cancer community, so would not be likely to know anyone personally.  My oncologist and my breast surgeon both use Rational Therapeutics regularly.  The gynecological oncologist I go to (for a simple hyst., no cancer there, thank goodness!) also uses his services.  RT is used by doctors and their family members especially.  Dr. Nagourney has a reputation as the doctors' oncologist.  His services are used a great deal here in southern California, perhaps because he is located here.

I will keep you in my thoughts.  Hugs,  G. 

deenah

Ditto what G said about Dr. Nagourney being known as the doctor's oncologist. That is what I have heard too. When I had my surgery at long beach memorial, the nurses kept asking me why I came all the way from normal for surgery. When I told them it was for Dr. Nagourney's assay, I can't tell you how many told me they knew someone who's life he saved. He is very well known there. It is common knowledge at that hospital that his survival rates are twice the national average.

babs6287

I also just went to Dr. Grace recently. I found it a bit unnerving that he said that others with initial dx similar to mine that he treated had no re-occurances. How could we verify this? I was recommended to him by my BS who has become my friend and has followed with al my progression. I'm currently being treated at MSKCC which is supposed to be the premiere ca center so I'm a but confused now.

Would like others input

Thanks!!!

Babs