Tom's cancer is back

DanaMB3 said:

Praying for you and your husband
I will certainly say some prayers for you and your husband and I am sorry for the not so good news. However, I will think positively that you'll have more good times ahead.

In response to your other note about Dr. Vilaflor. We were there yesterday from 12:30-3:30 (met with her for about 40 minutes). We did like her. She was pretty easy to talk with and definitely came across as confident and a top doc in this area. But, we were not prepared/did not know that she needed one more test to be done before she could put a plan together for him. (The EUS - which we were never told we needed by the 1st doctor) - so now we wait some more...they are trying to schedule that down there next week. She gave us an idea of what her chemo plan would be (cisplatin, 5-FU) and would also do radiation. She had my dad's CT slides run down to the surgeon/Dr. Ferguson while we were there and he looked at them briefly in between surgeries. He said he could not detemine if he would be operable or not based on the slides and would need the EUS results.

She did mention her trials going on now - one for operable patients being the ACOSOG trial. It is cisplatin, docetaxel and panitumumab followed by radiation. Is that similar to what your husband did? We certainly have a decision to make about that - I think a trial is something we only thought we would consider if he was deemed inoperable. We are just so confused and praying we make the best decisions.

Where is your husband having his chemo carried out? My parents live in the Schaumburg area so it's definitely a drive and as you know the traffic is horrible. We know it's not going to be convenient but will do the best we can.

Trials
We were there just before you and left before you arrived...

My husband's trial drugs were cisplatin, taxol and erbitux...

His schedule was brutal....radiation every day..Chemo on Wednesday...it took 8 hours with all the stuff they do in between + radiation..and every Thursday and Friday hydration therapy which is really important. All of this had to be done at the U of C since it was a trial. Dr. Villifor likes to keep an eye on her patients...all of them.

We live in NW Indiana and he generally rode the South Shore Train in...when he got off the train, the shuttle to the U of C picked him up and dropped him off right there. Many times I would drive him up or take him to the station and then he would call and I would go up and get him...via the Skyway and Indiana Tollroad...fortunately for both of us I will literally drive anywhere and in any traffic...

Now since this isn't a trial he can have his chemo done locally at that's 5 mins from our house...driving to the U of C is no picnic and in the winter, well that's a whole different ball game entirely. He will be supervised by the liason doctor from the U of C we met in 2009...he will keep in touch with Dr. Villifor and Dr. Campbell. We know so much more than we did in Sept 2009...it's a steep learning curve, but the board can help you in that area...if you have a question ask.

As far as operable..the surgeon pretty much decides that..Tom had one active lymph mode in the clavicle area that nixed the surgery for him..

Making the right decision...first of all you are at the best place in the Chicago area for your Dad's care. She is a top specialist in the field..the chemo treatment area will give your Dad excellent care and supervision...I can vouch for that.

Dr. Villifor and Dr. Campbell will help you with the decisions and you will find your gut feelings are generally good ones.

I hate that your family has to go through this...everyone here will say the same thing...but you have good doctors...and that makes a big difference.

They'll get that test done quickly...they don't keep you waiting and waiting..so you're in luck there.

You can email me if you like..you can also call...your Dad can talk to my husband if he'd like...

I know you're scared...terrified might be a better word...we're all scared..we've all been shocked, horrified, confused, numb and in a daze..once everything starts it will be better..because you'll be working toward the goal of beating the cancer...

Let me know if I can help you in any way...even if it's just a shoulder to cry on..I'll be here for you.

jan

Are there any trains he can take? It's a good option for constantly driving..

EUS...would that be the endscope ultra sound test? Our local hospital does not do that..they don't have that...but our original gastro dr..told us u of c does and sent us to Dr. Wallace...here's a good one..our original gastro dr..graduated with our oldest son and use to study AP Chem in our living room..