Thanks Eileen.

I still don't have a clear understanding as to why, but sis-in-law has something against Sloan Kettering. She cancelled the appointment that it took me nearly 8 weeks to get. They have cancelled two appointments there now, and argue with the family when we question their logic. As she is considered his primary care giver being his wife, I don't really have any sort of standing to override her - and sadly, my brother is too weak minded right now to override her himself.

Although I'm not defending anyone i know I get defensive when other people question the decisions my husband and I have made regarding his treatment. I realize family members want to help and that in itself is a wondeful thing, however it tends to make me nervous and defensive as I believe we make the best decisons based on what his doctors discuss with us. Believe me when I say your brother may have already made his decision about how far he's willing to go. My husband has told me that this is his decision, not mine, and he will let me know when he's had enough. Please know I have only the best intentions and wish you peace in this most stressful of times.
Sue

Is it only Sloan or does she not want a second opinion from any hospital other than one he is being treated in? There are several other good hospitals in NYC. If she is willing to go to another one, maybe Brian could recommend one for you. Actually, his current doctor should be able to recommend one also.

Take care,
Eileen

Colleen, This sounds like an incredibly hard and confusing time for you, your brother and sister-in-law and the rest of the family. I'm so sorry. The thing about "time for hospice" is that no one really knows for sure. Its a doctor thinking that he is *likely* to have 6 months or less to live. That's all.

That doesn't mean that there may not still be treatments that can ease his symptoms or give him a little more time. Radiation can sometimes be used as palliative treatment and I think someone needs to be asking if that is why it is recommended. Same for the chemo. What I would want to know is what are the advantages of having radiation and chemo at this point? Is it being recommended because there is a chance of remission of his disease or is it just goung to maybe slow it down? If it's the latter, how MUCH does it slow the progression down on the average and what are the side effects he will be experienceing in exchange for the time it buys or MIGHT buy?

Personally, I would not want to go through more radiation or chemo unless I knew it would probably add some good quality time to my life. If it only adds a month or two, on average, and might make me really sick, I realy wouldn't be interested. But we all make our own choices at this point. Some people want to fight as hard as they can for absolutely as long as they can. But good decisions can't be made unless he gets those questions answered.

Nelie

Colleen,

Like I said before I think you should get to a CCC, like Sloan, ASAP. Don't waste another second and get an appointment and see what they say. Be sure and take all his records and scans. Pick up the phone right now and get moving. That's a friendly order.

With all due respect, it is the patient's decision.

Good morning.

They are giving him the radiation and chemo as palliative measures. I appreciate all the sound advice on getting him to a CCC center, etc. However, as said previously, I AM NOT his primary person, that is his wife, and she cancels every appointment I make.

That said, our concerns have run the gamut - last week it was his platelets (now up), then it was his white count (still waaay too high), but the last two or three days it has been his breathing. It is very labored, and the doctors have said the cancer in his lungs is just too profuse. They told him Saturday that he was terminal and would not survive. He seems to have accepted it (I think he knew anyway), but still vows to fight on.

I was worried I had become to close to the situation and had lost my perspective on how bad he was, and I had. When my other brothers and sister arrived they were all shell shocked.

Having been at the bedsides of my mother and uncle when they passed, I have come to understand that he is very near to where they were in the days just before. I anticipate that God will take him before mid-June.

Thanks again everyone for all of your support.

Colleen,

I am so sorry you feel so powerless to help your brother. It must be an awful feeling and I pray that you have the strength to simply be there for him and your siblings during his last days.

Sending hugs and thoughts,

Deb

Colleen, I was so sorry to read your latest news about your brother. I know what you mean about losing perspective. My father, who had congestive heart failure problems for years, went suddenly downhill right before he died and my mother didn't really notice it the way others did beause she was there for him everyday. It's good your other siblings are there now- I hope you can all be present with him in the time you have left and also be a comfort to each other.

I am keeping you in my thoughts.

Nelie

You must feel terrible about this situation, but maybe it's your brothers wishes not to be treated with rads and chemo if they won't keep him living years longer. You have all my best feelings going with you, but if I have to do it again, I want a guarantee that I get years not a few weeks. I want what life I have left to be quality and me in control. My family agrees with this.