June 9, 2010 at 5:43 pm #38955gavinModerator
I am very sorry to hear this news. Not what any of us wanted to hear. I wish there was something that I could say that would help, but you know we’re all here for you.
I can’t add much really about the chemo question and if someone didn’t want to do that then I wouldn’t argue with them. In my dads case, I always told him that I would support him in whatever he decided to do or not do. Spending your time having a damn good time sounds like the plan to me and I hope that you enjoy going back to Milwaukee in August to see the family.
My best to you and Teddy,
GavinJune 9, 2010 at 2:51 pm #38954elainewSpectator
I wish you had received better news, but your fight is far from over. One thing you and Ted have always done is to inspire other people to be realistic, fight the good fight and never give up. You still have plenty of quality time left to be there for each other, and I know you’ll use it doing what makes you feel good. My prayers are with you both.
ElaineJune 9, 2010 at 2:47 pm #38953rick-kampMember
So sorry to hear about the surgical consult. It sounds like that cancer is being a buggar now. Is it worth trying to get another opinion on it? I’m sending prayers your way and wishes for this to get figured out!
We were just in Milwaukee for a few days, sounds like we are just missing each other. I hope you have a good time there.
RickJune 9, 2010 at 2:11 pm #38952
Thank you Darla, Kristin from KY, posted me today and one of her doctors had said the exact same thing. The weird thing is if you saw Teddy you would not even know he is sick. I have to keep telling myself that he is in discomfort and he is tired a lot and that is the beginning or what ever pint we are at but it is there as a reminder. It’s so hard to answer his questions but I am being very honest with him. Today he asked me about hospice as he doesn’t want to go to the hospital and I explained that to him and that he can stay home. He asked about pain control. Yesterday we were shocked even though we expected it, and today I am teary and numb, didn’t sleep last night, but he won’t let me cry! I told him I would wait until he was at Mass. For some reason he feels if I cry he has failed me. I told him the chemo was his decision that I could only gather the facts. I am thinking he thinks if all he will gain is a not so good month or 2 what is the use as long as he will be on pain pills. We have to wait and see until our visit to the Onc, who I am calling this morning. We did have the ONC scheduled for June 25th for our duo appt. but the surgeon said not to wait. Another MmmmmmJune 9, 2010 at 1:50 pm #38951darlaSpectator
Not the news any of us wanted to hear. I am no expert, (although I am beginning to feel like I know more than I ever wanted to know about CC). I have never heard of that chemo theory either and I think you are right to research this further and then go with your gut. I guess all we can do is the best we can do and only Teddy and you can decide what is best. I would chose quality over quantity, but who knows, maybe he can have both. He is the “Miracle Man” after all! Keep the attitude it will make a difference.
Thinking of you both.
Hugs & Love,
DarlaJune 9, 2010 at 1:01 pm #38950
Oh, thanks, Kristin and what your doctor said was exactly the words ours used. I think I will be asking the ONC about Gemzar and Avastin.
How are you doing and how did your visit go yesterday?June 9, 2010 at 12:42 pm #38949kristinSpectator
I’m so sorry to hear Teddy’s news. But Teddy has always been an exception to EVERYTHING and I expect that will continue!
My old (awful) oncologist did recommend Gemzar for me, because it would give me a higher quality of life even though not stopping the tumor, so I have heard of that. It’s called palliative chemo.
At the time I just stuck my fingers in my ears and said lalalalala, and it’s a good thing I didn’t listen to him, because that was 3 1/2 years ago, and it’s only now that I might seriously need chemo.
I think it’s time for another Teddy Miracle– God, are you listening?
KrisitnJune 9, 2010 at 12:14 pm #38948betsySpectator
I’m so devastated for you and Teddy. I don’t have any chemo. advice to recommend but I am sending lots of hugs.
BetsyJune 9, 2010 at 11:24 am #38947devoncatSpectator
I to am sorry to hear the news. I did VERY well on gemzar/cis. For me, the only side effects were tiredness and once in awhile wonky blood values…but I never felt any different with wonky blood values.
I have never heard of chemo being given for the effects of cancer…only to shrink it or keep it stable. We all have seen people respond very well to chemo (wish I was one of them). Who knows what the future holds? Chemo doesnt work for me, yet here I am 18 months after reoccurance still going strong…despite some tumor growth and spread. Even my doctor thinks I should be dead by now. But instead I skipped, yes skipped down the hall to the radiation room. Like you said attitude is everything.
KrisJune 9, 2010 at 3:35 am #38946donna9Member
I am so sorry to hear the news. Jim stopped the gemzar and had 5 good weeks.
He too looked healthy and not like someone dying in 4 weeks. Hang in there, enjoy the goos days. DonnaJune 9, 2010 at 2:22 am #38945
Thanks Beth, I will ask the ONC when we see him. Have you ever heard of Chemo being given so that the effects of the Cancer as it progresses are not as bad?June 9, 2010 at 2:12 am #38944beth-oSpectator
Lainy- sorry to hear the news of no surgery. Has he ever tried Avastin? It is an option to discus with the onc. It has not been studied in cc but it had in renal cell ca and lung ca in a palliative setting and has had some decent reults just keeping things at bay. If he is feeling that good maybe this would just keep him there longer. Worth a try. It is a 10 minute IV every 2 weeks with little side effects….unless he has a history of GI bleed.
Good luck. Glad to hear you are still dancing. There isn’t much better.June 9, 2010 at 2:06 am #3639
We went to the surgeon today to find out that surgery cannot be done. The tumor wrapped itself around his right ureter and connected itself to his bowel (which was all rearranged from the Whipple)and none of it can be got to for surgery. He cannot have Radiation as it is in almost the exact place as before and the tissues there will not handle more Radiation.The Surgeon is suggesting the chemo, Gemcitabine which has very few side effects? The question Teddy has to mull over is, if it extends his year by only 2 months or so is it worth going through? The Doc explained that taking chemo will not stop the growth but will ease the Cancer side effects as we go along. Still looking in to that until we are convinced.
We have an appointment the 25th with our ONC but the Surgeon wants us to see him sooner no matter what decision Teddy makes about Chemo.
We have decided to go to Milwaukee for 2 weeks in August to spend time with family. Anyone who would see him now would think we were lying! He not only looks good he feels pretty good.
With that aside we are going to spend our time having a damn good time! We still hear the music playing for our Cancer Dance!
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