50yr old Dad Stage IV-Help without Stressing out Parents?

lapsaria · Regular Joined: 21 Sep 2009 Posts: 11

Hi all,

Thank you everyone for the responses; I'm sorry I haven't managed to reply earlier but I'm now in Taiwan visiting my dad. For the most part, he seems ok, but moves a little slower. He has definitely lost his gut and seems thinner to me, although the scale says his weight is the same...I'm guessing that this may be due to muscle mass? He's still working almost full time starting 1-2 days after chemo. Sometimes he eats a big breakfast, but then nothing for dinner. Ionno--he definitely eats less than what he used to, but we're a family of big eaters to start with.

I was wondering if anyone could answer some questions about their experience in the States. I've been doing a lot of research; unfortunately, most of it has only managed to familarize me with what's going on in the States and I want to confirm whether or not this is true--it's possible that things are done differently in Taiwan, but if so I want to know for sure.

[b]Radiation + Chemotherapy:[/b] I've been reading that receiving both is currently the standard in the States and that survival chances are better for those who concurrently receive treatment. Is this the case for most people or are there people here receiving just chemo and do they know why? My dad is currently receiving only chemotherapy...but I'm not sure of the reason. I suspect if I ask them they will reply with the dangers of overradiating.

At this point, my dad has had his 2nd chemo round already, but they only took an X-ray at the time. They plan on doing a CT-scan during his third round of chemo to accurately determine if the chemo is working. When my brother asked them why they were doing it this way, they mentioned the over radiation thing. While this kind of sounds logical to me, it sounds like this is definitely not the norm in the States?

[b]Standard Treatments:[/b] From what I can gather, it sounds like there is a "standard" form of treatment for lung cancer patients at the late game stage. But if this is the case, then why do people switch doctors? Is it only when most stuff is not working? Do different doctors have different opinions on which drugs to take? Etc. My mother is of the opinion that we try everything at one hospital and if nothing works, then we move on to another doctor--but I want to know if this is usually how people works, because it doesn't sound right.

[b]Eye-twiching: [/b]My dad is currently on cisplatin/alitma + Avastin. I've read that carboplatin is the preferred in the States and that while cisplatin might have a slight advantage in survival, it is far more toxic. I've noticed that my dad now has an eyelid twitch sometimes that he didn't used to. As cisplatin can cause nerve damage, I'm extremely concerned. Are side effects like this considered normal/bearable? I plan on asking the doctor about this, but am curious to see what other people's experiences are with side effects and what is considered acceptable.

mimirdh · Posted: Mon Nov 02, 2009 6:35 pm Post subject: hi lapsaria

i am going through a very similar situation. my mom is 54, smoker though who has a lesion on her right lung with little speckles throughout both lungs, and a tumor in the right and left side of her occipital region of her brain. she has had a biopsy today and we are just waiting for the news.

my life as yours has just been wonderful until 5 days ago and now i feel like i'm living a complete nightmare! i'm supposed to get married may 21, 2010. we live in ny and are(were) having a destination wedding in dominican republic. right now we are living day to day hoping for a promising outcome from the doctors when they get the results of the bioopsy. just hoping that she can be treated and live, even if its not forever! i've went from bridespacing on the interenet to brainspacing for hours trying to research anything and everything about cancer. everyone keeps asking me what am i going to do about the wedding. i can't even imagine my mom not being there. i'm the only girl and my 2 bro's are already married.

all i can do right now is have faith and try to trust that the doc;s and medicine will do its job.

you are definately not alone in this fight!!

lapsaria · Regular Joined: 21 Sep 2009 Posts: 11

Sorry you're in the same boat as I am mimirdh, but thank you--it is nice to know that we're not alone!

I completely understand where you're coming from--my bridespacing days became completely filled with lung cancer research in the first month. Like you, I'm the only girl and I've been desperately hoping that my father will be able to walk me down the aisle. My wedding isn't for another year though and my parents are afraid that barring prognosis (piece of poo in my opinion) they probably won't be able to take the 19 hour flight or so back to the States. Instead, my fiance and I are going to have a large engagement banquet in Taiwan with my parents and do a lot of the traditional wedding ceremony stuff this December. Still, I share a lot of the wedding stuff with my parents because it makes them happy and is a motivation for them to hopefully make it if it's possible--I'm sure the same holds for your mother.

Additionally, I know this site has already been shared by some, but I thought I'd share it here since I've found it invaluable for medical advice and information (since I'm essentially trying to compare treatment in the States vs. overseas): http://www.cancergrace.org Dr. West and the other doctors usually respond to my medical concerns in a few hours.

Stay strong! For me, being as knowledgeable about the cancer and treatment options is my string to sanity. And don't abandon any wedding plans just yet!

mimirdh · Posted: Wed Nov 04, 2009 7:36 pm Post subject: :)

lapsaria,
thanks for your words of encouragement!!! lord knows its very easy to be discouraged with the info and statistics but we do have to be positive. my mom is very determined to give a good fight if she needs to because she doesn't want me to make any changes to my wedding plans. i hope i don't either but will do whatever it takes to have my mom there, if i had to get married in the hospital and walk down the corridor as my aisle so be it . i laught at the picture in my mind of it though. as i continue to look online at all the info the statistics are so poor i don't think i'm going to have the doc's give us a time frame. my friends mom was given 3-6 months and its been 3 years and counting and she's living a quality life still. well i just wanted to say thanks and although its a really sad situation its nice to be able to share my feelings with someone who is going through the same thing! so thank you!!!!

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