Should we stick with stable?

Thank you Melinda. I shared your post with Mom and also some of your news articles. Not surprisingly she loved the fighting attitude and said to share how much she admires your courage. She now has the boxing gloves on. You are inspirational. Catherine.

Hello,

I’m glad we pushed rather than wait for progression and then go back on chemo. We asked our ONC to have the “tumor board” team to take another look and their suggestion was to go and do the Y90 again (had it done in Feb). They stated that since she has been stable since then (no mets anywhere else) and she has responded so well to the 3 chemo cycles and SIRT, to go back and hit it hard. Goal is not only to kill the tumor, but to effectively have a radiation lobectomy. Since the left lobe is so much smaller, plenty of right left to function well. Additionally, right lobe has already increased in size to pick up damage they did to left in Feb.

So far, I only found one reference to radiation lobectomy and the HCC patients had a 46% 5-year survival (not too shabby), but that Mom is ICC and in a lousy location, we’ll see how it goes (this is my concern not something doctor said). However, we are very happy with going down this road. The Y90 is outpatient and fatigure for about 2 weeks. She will have to go on xeloda 2 weeks prior and 4 weeks after to promote uptake of the radiation. PET scan will be 3 months later. Hopefully we are doing this soon enough.

Catherine

Hi. We pushed to see if we should be aggressive rather than wait for a bad scan and then restart chemo. Meeting is Tuesday with interventional radiology and we may do more SIRT. I read another post today which mentioned that because surgery was not an option all they could do was chemo. I hope all are looking into other options as well (rfa,radiation,sirt,etc) . You need an interdisciplinary team and not just an Oncologist. Onc view seemed to be that Mom already has surpassed the norms, but I do not think she knows that the norm has changed and although gem/cis is standard first line, targeted treatments are contributing to longer survival times.

To use Lainy’s term- YIPPEE!!!

Met with Mom’s oncologist, and tumor even got a bit smaller (3.5×4.1) from residual radiation effects from SIRT she had in Feb. We were told come back in another 3 months. From what I’ve read, treatment free for such a long spell is a blessing – we were so thankful for the results.

However, I still worry that we should be doing more. I asked about RFA and just sent her doctor recent references (thank you Gavin) showing how patients after SIRT went on to eradicate a single tumor using RFA. I also sent an article from last month where the mean survial was 38 months (out to 69 months) for this treatment. It was a small study group, but guess that is the norm for CC.
http://www.ncbi.nlm.nih.gov/pubmed/24637151.

Mom mentioned on the ride home that she feels like she is living with a ticking bomb inside of her. Her oncologist said she would confer with the team and see their thoughts on additional targeted therapy. Dr. Moeslein (Percy has mentioned him) did her SIRT and also is a pioneer in nanoknife . I’m not sure if he does RFA as well.

I worry that we may be missing an opportunity while the tumor is small to treat it, but also worry that I am pushing to put her through more invasive treatments that may not prolong her life. I guess what no one has definitively answered (and probably don’t know) is if we get rid of the one tumor, will it give us a longer stretch of time till it progresses.

Her doctor only treats a handful of CC patients, and Mom has already exceeeded her expectations from first diagnosis last October. They (Univ of MD) do have a diverse tumor team, and so far I feel her treatment has been the best possible mix of agressive treatment with minimal impact to well being and quality of life.

Thank you all for being here.

Catherine