Very Late Herceptin for early stage - Page 2

RobinP · 12-06-2005, 05:42 PM

DFS denotes disease free survival, in other words, time where your cancer has not relapsed from initial stage.

Lolly · 12-06-2005, 06:02 PM

"...Anyway, I suppect that the cardiac damage will be much less in the adjuvant setting than the metastatic setting as Herceptin is used more frequently and longer in the later..."

I think this is an excellent point and would like to add that most of us in the metastatic setting on Herceptin are also on/off various chemo combo's which no doubt add to the cardiac risk.

<3 Lolly

RobinP · 12-06-2005, 06:12 PM

Lolly,

I agree that the cardiac damage would be much less in the adjuvant setting, particularly if Herceptin would follow AC as opposed to commitant use with anthracyclines which are already cytoxic.

nancymarie · 12-09-2005, 12:31 PM

Robin,

I was initially diagnosed back in 2002 - IDC, Stage IIB, Her2 3+. I was in the clinical trial for Herceptin but I just got put into the control group that just got the normal chemo - AC and Taxotere.

After hearing all the positive news about Herceptin, I pushed my oncologist into letting me have it. My breast surgeon also said that if he declined, to get a 2nd opinion so I am really glad he is letting me get it.

Today is my Herceptin. I will be getting it every 3 weeks for a year.

-Nancy

RobinP · 12-09-2005, 01:59 PM

Good luck to you. Yes, I have seen four separate oncologist for late herceptin, 3 are breast oncologist. All four said no to late herceptin so far due to lack of medical benifit late after treatment. As for me, I am still investigating the ins and outs of adjuvant herceptin late and still talking with oncologists about it. Just got my serum her2 done, awaiting results.

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.