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Old 04-04-2007, 11:42 AM   #1
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jeaniek HB User
What Next

Hi Everyone. I was debating on posting this amid all the great news I read today on the board - always great to see some happiness here!
Unfortunately my dad has taken a turn for the worst this week....let me back up a bit...he is at stage 4 sclc w/several mets to his brain. with chemo the tumor in his lung was successfully shrunk from 2.7cm to .9cm and many of the lesions in his brain shunk significantly with radiation. He received this good news about 3-4 weeks ago after he completed his treatment plan.
Over the weekend he was visiting my aunt, and she noticed that he had symptoms like what he had initially when he was diagnosed...slurred speech, difficulty walking, forgetfulness. My dad went into the hospital on Monday and after further tests, it was determined that there are 2 new lesions on his brain that shows the cancer has returned. They are not recommending more radiation or chemo at this point, and that everything that could be done was already done. His doctor did mention that there maybe the possibility of treatment using cyberknife or maybe more aggessive chemo to treat. We are meeting with his oncologist this afternoon to discuss everything....but was wondering if anyone had any information on any of this? I did some research on the cyberknife and it looks promising - actually i don't understand why it's not used in place of traditional radiation. I guess pallative care will come in and speak to us about hospice and what to expect. Sorry to post some bad news, was just hoping to see if anyone knew what to expect at this point - I know every person is different when treating this, but I'm not sure where else to turn to right now.
Thanks
Jeanie

 
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Old 04-07-2007, 09:19 AM   #2
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Re: What Next

Hello again Everyone.
We met with the doctor over the week and it was confirmed that nothing really can be done at this point. There is still hope for a gamma ray surgery or again the more aggressive chemo, we have an appt. on Monday to speak with his oncologist. Hospice will start coming in on Monday and although it is a scary place to be, it eases my mind a bit to have them helping. From what I read here, it seems like they do an excellent job of teaching the family what to expect and keeping their patients comfortable. It's again pretty scary to be at this point, but my dad is in good spirits and is enjoying giving my mom a difficult time this weekend - they've been divorced for many years but they're better friends then married couple....we're trying to make the best of these days he has with us, taking him to places and we'll take a family picture net week - if he's feeling up to it, he's been sleeping a lot...his appetite is there, but once he has the food in front of him he just picks at it. he's been cold a lot as well. Any suggestions on what I can do to make him comfy or get him to eat as well? Or just what to expect as well?

 
Old 04-07-2007, 10:23 AM   #3
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Kimslos HB UserKimslos HB UserKimslos HB UserKimslos HB User
Re: What Next

Hi Jeanie,
Oh, how I feel for you and have you are up against. I was surprised to read they were suggesting gama knife because based on what we have been told with SCLC (I thought that is what your dad has) it is not possible to isolate the brain tumors. They explained to us with SCLC that it just spreads everywhere and once they zap one tumor another pops up very quickly as it knows something is going on. We were told that is why when they have SCLC that has gone to the brain they will only do whole brain radiation, which I am thankful Stan had not done in Sept. 05. I honestly don't think he would be here today. I wish I could tell you how to make your dad comfortable as I am in about the same boat with Stan lately. He eats, but not as much as before and is very picky about what he wants. I let him try to make the decisions or throw out ideas to him and let him pick in hopes he will enjoy the meal and eat it. Stan LOVES baguettes so I went to the French Bakery last week and picked up a nice warm one for him and he enjoyed it. I use to make a lot of homemade soups, but over time Stan needed a change so now I go out to Panera and buy him soups that he enjoys. It is so hard to say what your dad might enjoy compared to someone else so do hope you can come up with some of your dad's favorites. I keep everything smaller in portion as it overwhelms Stan and gets upset when he sees a plate of food that looks overwhelming in size. (not that it is a huge portion, but what he use to eat) Stan runs cold too so he has a couple of favorite blankets I keep on him during the day in his Lazy Boy chair. He also wears sweat pants and sweat shirt. It just has not warmed up here in sunny Calif yet!
You are a wonderful daughter to your dad and hope your dad can still have some quality of life without too much discomfort.
You hang in there and also think it neat your mom still is friends with your dad!
Big Hugs to you! I can really relate to what you are going thru, but we are not to the point of Hospice and know what adds even more emotions. May you enjoy the time with your dad and keep faith.
Kim

 
Old 04-08-2007, 08:04 AM   #4
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jeaniek HB User
Re: What Next

Thank you so much Kim.
Stan has become an insperation to both me and my dad (Gene) I have always mentioned this board and the caring people here and that it is a place to find people who understand and care.
Living with sclc since 05 is amazing! I am so happy for you and Stan. I know things can get tough with this disease, but it's always wonderful to see that!
You're right, my dad does have sclc, when mentioning the gamma knife,I felt like the doctor was kinda stringing us along...making empty promises when they knew that the likely hood of something being done was next to zero...you can see thru plastic smiles and uncaring eyes. Of course, the person who I can't wait to speak to is his oncologist tomorrow. I will be sure to mention this fact to her, as nobody has ever told us this concern about the surgery - they are the ones who brought up the idea as well!
My father did have the full brain radiation last year when he was diagnosed. I wonder know if he chose not to do so, would he be at this stage? i know you never can tell or know, and I try not to second guess his choices...but it's hard not to at times.
I understand completely about Stan seeing food and feeling like he's wasting it...my dad has been doing the same. It's not a large amount of food, what he normally used to eat, but he kept appologizing for not finishing the 2 pieces of chicken i made him a few days ago. I will definately use the trick of putting portions on a smaller plate.
He has his "blankie" he takes everywhere with him, but he's still complaining about being cold. I have so many questions for both his doctor and hospice tomorrow that I'm making a list. We're not pushing him, he suggests things he would like to, and we were able able to take him for a drive yesterday, but he fell asleep in the car for most of the ride. I understand though.... It's not spring here yet either - gotta love chicago weather 30's this morning - but the flowers are starting to bloom and the grass is very green and coming up...it was nice to take a ride into the "countryside" and just enjoy the scenary for a while.
Hope you and Stan have a wonderful weekend - and a very happy easter

Last edited by jeaniek; 04-08-2007 at 08:09 AM.

 
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