Anyone in the PTEN/Herceptin trial?

atdec05 · 02-23-2007, 12:25 PM

I just got the preliminary results of a biopsy - so far I have a local recurrence near my mastectomy scar.

This appeared as a little pimple that sprouted up in my last month of Herceptin!

I've been reading that some women don't respond to Herceptin because of low levels of PTEN protein, and there are trials for women to take Herceptin with something that ups the PTEN levels.

Anyone doing this?

This may be premature because I have no hormonal results yet, but just trying to plan ahead.

Also will do a total body PET/CT MRI for the first time. What's that like? I'm bummed they can't use my port.

- Anna

Becky · 02-23-2007, 01:11 PM

I am not sure there are PTEN promoters. Theorectically, there can be active PTEN, no PTEN or an inactive form. Obviously, there may be little you can do if PTEN is not present. However, the inactive form has been shown in a petri dish to be activated with beta glucan - an active ingredient in maitake mushrooms. When I was on Herceptin, I took maitake (still do but not as much). I can't even tell you how much to take - it may be a moot point that I took it as the amount may have been insignificant. I took 100% dried maitake that was 575 mg per capsule - 9 capsules per day (3 with each meal).

Never had a Pet/Ct but heard they're not bad. Local recurrences do not mean that Herceptin did not work in your body. Scar tissue is extremely difficult for chemo or Herceptin to penetrate due to poor circulation in scar tissue so if rads didn't "get it" or if you had no rads, that is usually what happens as chemo and/or Herceptin do well everywhere else but that darn scar.

Probability is in your favor that the rest of you is clean as a whistle but the Pet scan is important to ensure this.

Try to rest easy.

atdec05 · 02-23-2007, 01:45 PM

Thanks, Becky.

You're always a fount of information, as well as a source of reassurance!
I did not have radiation - thought that was one benefit of a mastectomy. At the time I was relieved because my radiation oncologist said something about my tumor being very close to my heart and that a very small beam would be used if I had gone with a lumpectomy. Looks like radiation will be in my future now.

My recurrence showed up near my scar. Maybe scar tissue extends a way from the scar?

- Anna

heblaj01 · 02-23-2007, 03:25 PM

MD Anderson is supposed to run a clinical trial with either RAD001 (everolimus) or triciribine, which are PI3K inhibitors in the hope that they will overcome the absence of PTEN in making Herceptin active against resistant HER-2 positive cancer cells according to this piece of 2006 news:http://www.news-medical.net/print_article.asp?id=17230
Lack of response to herceptin may be reversed with PI3K inhibiting agents

Adriana Mangus · 02-23-2007, 04:24 PM

I have had MRI/Pet scan done in the past and there is nothing...you will do just fine;as for the other question, I have no clue, I believe Becky knows the answer to your question....Good Luck and please let us know the results of your studies, we are always here, you can talk to us anytime....

StephN · 02-23-2007, 04:34 PM

Anna -
Sorry this is going on with you. ALl the best with this round.

I had been told by my surgeon that the scar areas needed to be watched for the reasons that Becky described. The surgeons should know what to look for.

As for the PET/CT - this is the fusion of the two scans which are taken one after another in the SAME machine without you having to get up. You do have to fast and then be injected with the radioactive substance. After resting a while the nurse brings in a bottle of contrast to drink. It is a little different than the really thick, chalky stuff you usually have for a CT. It was just a bit easier to get down. Then you have a second one to drink part of and then they give you the rest just before the CT portion of the scan.

For the PET part, they do the 7-minute intervals as the camera moves down your body, so it takes about 35 minutes for this part.
At my hospital they seem to have stopped giving the Atavan prior to the test. I was glad so I could drive myself to and from the hospital and no one had to wait through this long test for me.

I have my next one already set for April 12. Normally since I am NED, there would not be any need to have them so often. It is just since I am taking the Herceptin break, that my med onc wants these scans.

atdec05 · 02-23-2007, 05:05 PM

Thanks for the PET/CT explanation.

I am such a coward about anything involving needles - guess I picked the right disease :-)

Plus I've been spoiled by being able to use my port for everything over the past 1+ year.

I'm so fortunate to be in a good health system. I saw my surgeon today - she called to see if the results were ready and at least was able to give me a preliminary confirmation. Then she called my oncologist and I was able to walk over and get at PET/CT scan scheduled for next Tues and an appt with my onc. for Wed. So there won't be too much waiting involved.

I figure I will have radiation; I wonder if I'll have any additional chemo. I didn't have Taxol being originally stage 1. Goes to show how aggressive these C cells can be.

- Anna