HER2 Support Group Forums - View Single Post - Hi I'm new here/ Q re length of Herceptin treatment

Cannon · 10-30-2007, 08:20 PM

Hi again - thanks for all the love for my dog - it's actually his name that is Cannon, I borrowed it for my username. He's 7 and a total love. He was supposed to be a guide dog, but honest-to-goodness, he's afraid of cats, so they failed him (they call it "career-changing").

Saw my onc today and he said he would not recommend continuing on Herceptin past a year, with me not being Stage IV, and given the possibility of cardio-toxicity. I got the impression if I had pressed, he probably would have continued a little longer, but I'm pretty sure I'm ready to risk it.

He did tell me that he knew of another drug (for a different disease, not sure if it was even a cancer) that had a similar gene-modifying effect - or whatever it is that Herceptin does - that they could not get enough people to go off for a good A/B test. But some patients did take themselves off it, and they found that the disease did come back.

I asked him if this was a relatively low risk thing to try going off Herceptin, though, since there was a high likelihood that if I recurred, the Herceptin would work again. He did agree with this thinking.

He also told me of a patient he has who has BC, and had a bone met 25 years ago! treated with whatever they had at the time, driven into remission. Had a new bone met last year, and she is back in remission now. He cares so much!

So, I will have my last Herceptin in early December, and then do the scan thing again. My markers have all been normal for a long time.

10-30-2007, 08:20 PM	#9
Cannon Senior Member Join Date: Oct 2007 Posts: 203	My onc's answer Hi again - thanks for all the love for my dog - it's actually his name that is Cannon, I borrowed it for my username. He's 7 and a total love. He was supposed to be a guide dog, but honest-to-goodness, he's afraid of cats, so they failed him (they call it "career-changing"). Saw my onc today and he said he would not recommend continuing on Herceptin past a year, with me not being Stage IV, and given the possibility of cardio-toxicity. I got the impression if I had pressed, he probably would have continued a little longer, but I'm pretty sure I'm ready to risk it. He did tell me that he knew of another drug (for a different disease, not sure if it was even a cancer) that had a similar gene-modifying effect - or whatever it is that Herceptin does - that they could not get enough people to go off for a good A/B test. But some patients did take themselves off it, and they found that the disease did come back. I asked him if this was a relatively low risk thing to try going off Herceptin, though, since there was a high likelihood that if I recurred, the Herceptin would work again. He did agree with this thinking. He also told me of a patient he has who has BC, and had a bone met 25 years ago! treated with whatever they had at the time, driven into remission. Had a new bone met last year, and she is back in remission now. He cares so much! So, I will have my last Herceptin in early December, and then do the scan thing again. My markers have all been normal for a long time. __________________ Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++ Neoadjuvant A/C 4X Dose Dense 11/06 Bilateral Mastectomy (no choice on the right, my choice on the left) Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07 33 Rads Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier) Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause BRCA negative - lots of cancer in my family survivor of thyroid cancer also have Crohn's disease CT and bone scan say NED as of 5/13 dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35 1/13 Acute pancreatitis - are you kidding me? 9/13 started Humira for Crohn's. starting to have some energy again B12 and Vit D both needed supplementation Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years? 4/14 Kidney stones/blockage/infection - related to Crohn's Disease 5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year 6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.