Where to go from here?

[barbara w]

Hi everyone -

I haven't posted or been online in so long, but it already feels comforting to be in the company of people who know what I'm going through. I've updated my profile so you can see how crazy the past few months have been for my dad and us. My sister also got married in October - thankfully my dad was with us to enjoy the day and dance away - which just added to the frenzy.

Anyhow, my dad has had a rough road. It seens that after his trial of Velcade each successive chemo was never completed, thereby failing. Since his WBR is finished, I assumed the onc would suggest another chemo or possibly tarceva - but she's not. She mentioned hospice which sort of surprised me since I thought ' why did we put him through brain surgery and WBR for this?' His recent brain MRI has revealed a small lesion at the site of the resected brain tumor. His liver function is fine, pain level is managable, and he wants to continue treatment. His mental status is definately altered since the surgery, and moreso since the radiation. He's not as active as he once was - who would be? - but he is still getting up, appetite is improving, cares for his appearance, etc? He's just getting over a tough reaction to the compazine he was taking - it was making his super anxious. While his onc thinks it might be time for hospice to make it easier on us, his palliative care dr. doesn't think it is time - nor do we.

I guess my question is ' what do you think? when do you know you've done enough? Or does anyone have any suggestions of where to go from here. Is there any hope in trying a new treatment - his onc doesn't feel so, but I think we just haven't hit it right yet - each treatment after the carbo/gemzar and then the trial was interrupted. Help!

Thnaks in advance.

Barbara

[Ry]

Well just let me address one part of your post and that is the comment on hospice. Your doctor may not mean he needs hospice now but he is asking you to start thinking about it. I used to sit on the board of a local hospice and one of the huge problems we had was doctors waiting too long to refer patients. Sometimes we didn't even have them a day before they passed away. Hospice can help with pain control and caring for someone at home and its best to think about it before you need it. If you have several in your area, you need to find out which is best.

Best wishes~

Rochelle

[stand4hope]

guess my question is ' what do you think? when do you know you've done enough?

I guess it doesn't really matter what we think. Only your dad can answer that question. From what I've read on this board, most of the time, the patient knows when he/she has had enough. From your other comment that "he wants to continue", it sure sounds pretty clear to me .... which leads me to your second question:

Or does anyone have any suggestions of where to go from here. Is there any hope in trying a new treatment

I don't see Iressa anywhere in your profile, and that might be a wonderful option. Also, if he just has the one brain met, stereotactic radiation (i.e., gamma knife, Novalis, etc.) might be an option.

If his current onc isn't willing to try other things, and your dad does "want to continue", then I would quickly ask your dad if he would be willing to get a second opinion.

Just my thoughts based on your post.

Sending my prayers and hope for a great future for your dad.

Love,

Peggy

[dadstimeon]

Hi Barbara,

Sorry to hear about your dad. I live just outside of (North) Boston. I have a fantastic doctor, have complete trust, faith and confidence in her. Trust her with my life. I have had great results under her care. If you/your father are interested in a second opinion of if your father needs someone to talk to be glad to help if I can. I also sent you a PM.

Rich

[Snowflake]

Barbara,

My suggestion is to go with your gut. It sounds to me (and I am NOT a professional) that you/your father are not satisfied with the answers you have just received to a question you did not ask. I would suggest seeking a second opinion. The insurance SHOULD cover it (though you may want to call the company and double check).

My oncologist set me up with my second opinion, set it all in motion. He lined me up with MD Anderson in Houston and I flew down less than two weeks after my first meeting with my oncologist (about four weeks after surgery).

As long as your dad wants to fight, keep finding him the weapons he needs. He surely doesn't sound defeated to me!

Welcome to the family, by the way.

Becky

[teresa567]

It sounds like you and your family do not have a lot of confidence in your doc at this point (and I don't blame you). If your dad feels he can withstand some more treatment, there will be a doctor out there that will find a treatment to try. It would be another story if dad was ready to give up but his family wasn't (I think that's what will happen with me...I can't stand the thought of losing my dad). A lot of it comes down to quality of life....if he's comfortable where he's at...check out another doctor at least to see what they reccommend!! You'll be in my prayers.

[barbara w]

Thanks everyone for your responses and care - we're going for a dr. visit today, so we'll see what happens. Over the weekend he's been acting really strange - almost like a form of dementia- which I medication related. He's still as strong as a bull, just really dopey. I'll let you know how it all works out. Thanks again.