Sister's Fight

[MaggieD]

All,

I really appreciate the feedback that you provided on this. Your comments/suggestions really helped me to come up with much better questions for the oncologist. I have gone to so many appointments and was sort-of at a low point with this one, probably because I was expecting more bad news...so thanks as well for your supportive words.

Well, some good news -- the scans showed that her disease is stable thus far on the lapatinib/herceptin combo. She will have another set of scans in 4 weeks and we are hopeful for unchanged or, God willing, some improvement! A few other follow-ups based on your comments:

- Cathya, thanks for the idea to contact Dr Slamon...will investigate this. We are on the East Coast / Boston area, but possibly he would do a phone consult. I will let you know what I find out.

- Sherryg683, I asked about various liver treatments based on your suggestion and a booklet I picked up on liver cancer listing all the possible treatments (NCI publication - "What you need to know about Liver Cancer). The oncologist said that all these procedures would only treat the tip of the iceberg in her case and would have risks. I think he might have been more willing to consider this if she was symptomatic. This is something I would like to explore further in a 2nd opinion because she only has 1 lesion. It is hard to know if it makes more sense to be proactive to deal with that tumor or wait-and-see if she will hit on the right drug combo that will improve things systemically.

- Chrisy, I appreciate all the time you took in your reply...honestly, helped me a great deal right when I needed it! I asked if the BMS study drug my sister was on previously was a taxane. The oncologist said no, but it was similar so that is one of the reasons why we did not move onto Taxol next (the other reason is that she was getting so weakened by chemo that taking a break with lapatinib/herceptin seemed to make the most sense). I am so glad that Taxol worked so well for you!! I will be looking into the other suggestions that you pointed me to...thanks!

- I asked about the HER2 status of her tissue sample and if that should be retested or she should have the Bayer test. The oncologist said that we could take another biopsy now, but her cancer definitely acts like an HER2 cancer (small tumors, very aggressive, tends to return) and that he still wants to give her Herceptin regardless....which probably makes sense. After we left, I was wondering if I should have also asked if there was a way we could determine if she is still ER/PR-. Can that be done via a blood test?

I asked the oncologist if some people have to try several different treatments before hitting the "jackpot" as Chris stated, and he said this happens "frequently". This is a good reason never to lose hope!

Any others thoughts/ideas are always appreciated. I will keep you all updated on progress.

Maggie