Very Late Herceptin for early stage

AlaskaAngel · 12-01-2005, 09:17 AM

The bone scan looks at bones for hot spots (which include things like arthritis) and the CT looks at all tissues in "slices". There may be differing philosophies among us about what to use if you do not have symptoms and particularly if you are NED. So I hope that it is understood that we may disagree with each other without animosity and only in providing food for thought.

The CT uses much more radiation than mammograms and so I believe it should be reserved for use for those with symptoms. The bone scan only looks at the bones and it is hard to distinguish other things like arthritis from cancer with the bone scan.

If you are HER2-positive and NED and symptom-free it would be my inclination to USE that to your advantage, and investigate the Bayer serum test or any others like it, along with breast cancer markers like the CA 15-3 or CA 28.29 plus other blood tests like your alk-phos and your ALT and AST (SGOT, SGPT) first before going to imaging. Imaging will still be there as an option if you are not satisfied by those test results.

AlaskaAngel

RobinP · 12-02-2005, 11:19 AM

The more I think of the 50% increase in DFS in the HERA study group, the more I want Herceptin, even if it is late in starting. This is particularly true with the lower response to Herceptin in the metastatic setting. I hope my oncol. will consent to it when I see him next week. I will let you folks know. I am also anxious to see if they address late Herceptin at the San Anton. breast conference. Well, we'll see.

Robin P.

12-09-2005, 04:07 PM

I always enjoy reading your posts Alasa Angel and what you say makes good sense. I was early stage and haven't had any, but did hear that the CT scan has a lot of radiation compared to the PET. As I said, I haven't had any, but would probably choose the PET over the CT. Just my two cents...

Barbara H. · 12-10-2005, 03:49 AM

I have posted this before but I was diagnosed stage 11b or 111 a in June of 98 and had my recurrence to the brain, lungs, and liver, and mainly thorough out my body except bones in May of 04. That is 6 years out. Two doses of Herceptin put my tumor markers in the the normal range and they have remained normal with no other chemo. If I had been in the trial, they would have seen me as responding to the Herceptin. The results of the trial are excellent, but it is way too soon to decide when and if someone should get or not get Herceptin. After what happened to me, I would fight to receive this drug if you are HER+++. Even if I had eventually relapsed with Herceptin, I believe it would have been later, and I would have had a longer time to fight it.
Best of luck to all of you.
Barbara H.

amya · 12-10-2005, 05:59 AM

I saw my onc. yesterday. She is not a breast specialist but is very good. I am 2 years out, stage IIb, 2 nodes, HER2+++, grade 3, Control arm of study (no herceptin). My onc and I have been having the Herceptin conversation since April and she initially gave me the "no data" line. She presented my case at Dana Farber and was told no Herceptin was recommended. We talked again yesterday and went through all the issues once more. She is no longer in opposition of the Herceptin and said my arguements make sense to her. She is sending me for a PET scan, Muga, and submitting to my insurance. If the insurance declines she seems to think I will have no problem getting a recommendation from a second opinion. The plan is to start by the end of January. She wants to start weekly until she is comfortable that I am tolerating and then will consider the 3 week plan. She has had 2 patients with serious cardiac complications and is concerned although I am very healthy and athletic. I want to thank all on this site. If not for Mamaca and all of you I would not have had the information I needed to advocate for myself. This is a difficult and personal decision for each of us.

12-10-2005, 06:48 AM

Here are interesting links on PET / CT /SPECT.

I have seen it reported that the new generation 4 axis machines techniques are capable of detection down to 4.5mm, 3d imaging, ability to differnertiate cancerous from non cancerous etc..

http://news-service.stanford.edu/new...head-0112.html

http://www.medicalimagingmag.com/iss...2005-06_01.asp

http://www.umm.edu/petct/physician_information.html

http://www.medicalnewstoday.com/medi...p?newsid=28116

RB

AlaskaAngel · 12-10-2005, 06:59 AM

2 cents plus 2 cents plus 2 cents... We may never get terribly rich here but we are better off than we were without sharing what we have to offer...

The drawback with PET is that it is more expensive, and as I understand it, it has limits in showing smaller tumors.

The biggest problem with the CT is that because it is now available in more places and is cheaper, even though the dose of rads is higher with it, more doctors are ordering it simply because they can. Again, I don't think I can say this too often or too loudly, but no one is keeping track of your total rads exposure (which is cumulative).

The study that Tom posted that discussed the 25% of breast cancer patients who have had chemo and eventually are diagnosed with another cancer later down the road may very well be a reflection not just of the chemo but of the continuing exposure these patients get to radiation through such procedures as CT, x-rays, mammography, etc.