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

[lapsaria]

My dad moved overseas about a month ago due to the current recession in the states and was doing part of his new job check up, which resulted in the diagnosis of Stage IV NSCLC-adenocarcinoma just last week. This came out of nowhere for us as my dad is 50 (51 in a month), has never smoked, and regularly competes in swimming competitions and mountain hiked with us just 2 months ago with no issues. The prognosis is 4-6 months. They're doing his brain and bone scans next week and I guess he's started taking vitamins (for chemo?!?!). My parents also bought Iressa (legal where they are) and my dad's started taking the pills already--he has a rash after 2 days, which I guess is a common side effect.

I'm still stuck in the states and my brother and I are going to be trading off going overseas to be with my parents, but I don't know how much is too much. Neither my brother or I speak the language overseas that well and I can't tell if it'll be additional stress for my mother to also have to watch over/feed us if we're there. My parents won't be the ones to say no to us coming over, but I don't know how to figure out if I can be helpful and not a burden if we stay for longer periods of time.

I feel really powerless and part of it is that I'm stuck across an ocean from them and I'm receiving all the information from my mom somewhat sporadically and then translated. I managed to get an actual CT and biopsy report in English, but since I'm not actually over there, I don't have any doctors I can talk to to get more information. I'm also scared that if I do go over there, I won't be able to learn more because of my limited language skills.

All I can get out of my mom is that my dad seems a little quiet and down and he's also apparently losing weight already--how is this possible?! He wasn't losing weight before the diagnosis, so is he just dropping weight very rapidly now?! My mom has asked me to also look into potential second opinions in the states, but this seems very expensive to do especially since they gave up their US health insurance when they moved and I don't know where to start to gather more research. When people say you should aggressively fight the cancer, what does this mean? If I start researching other treatments...do I just start blind emailing hospitals to see if they would take my dad?

I also don't know what to talk about with my parents now. My dad's x-ray happened 3 days after my engagement, which they were thrilled about. Should I keep planning for a wedding now? It seems not as important given the news...but I'm not sure if the rest of us are still supposed to move forward with things like that. Is it worse to do that if the prognosis means that he may not be around for the wedding?

Any advice, insight, stories would be extremely helpful. This was sort of long and rambly, but I've been holding a lot in. I can't get into the mood to talk to any of my friends and everyone just wants to call and congratulate me, which makes me feel awful...and I'm just not sure what to do.

[pbj11]

Hi and welcome to the forums,

I'm very sorry about this diagnosis for your Dad. It IS a shock because most people have no clue that non-smokers and people who quit decades ago are at risk for lung cancer. There are many of both types of people here on these forums.

I may have missed it, but did you say where all in his body they've found the cancer? Weight loss can be pretty sudden and dramatic as the tumor's grow.

Also --- did the doctor prescribe the Iressa to go along with the chemo regimen that it sounds like he's being prepped for? Your parents aren't self-medicating him, are they? This had me worried a bit. If he had a vitamin shot of B-12, sounds like they may be going with Alimta.

As long as they are doing appropriate CT and PET scans to determine the extent of the cancer and following standardized treatment regimens established for NSCLC, he SHOULD be okay without a second opinion. You'll need to find out exactly what the plan is for his treatment. There is minimal tailoring of these plans depending on the sub-type of the cancer for most first-line therapies.

Until all the tests come back, you may want to consider holding off on the wedding plans to see how extensive the cancer is.

May I ask if your father is Asian? Iressa and Tarvceva seem to show the best results in the Asian female population.

I know your mind is all over the place right now and I'm truly sorry. The shock of the diagnosis will wear off and you seem like someone who really wants to learn the information needed to help.

We'll be here, so feel free to keep asking questions and we're specialists in "rambling posts" because we've been there!

God bless and hope to hear from you soon,
PBJ

[lapsaria]

Thank you for the reply. It helps a lot more hearing back from someone than I would have thought.

The cancer is in his right lower lobe (3.5x7x8cm), left side of the adrenal gland, and nodules at the right middle lobes suggesting lung to lung metases. It's also in his lymph nodes.

I think my parents are self medicating him...the doctor didn't prescribe it, I'm not sure if he said it was ok for him to take or what the deal with. My parents said they would be willing to pay for it while they wait for other (bone/brain tests) to come in.

What is considered to be the standardized treatment established for NSCLC? My mother said that the doctor had suggested that chemotherapy +a ctarget drug was not preferable and even if that was the choice, they should wait 9 weeks into chemotherapy before starting the drug. My mother thinks 9 weeks is too late to wait and she's concerned about the side effects of chemo.

She told me that if the test comes back positive with the gene mutation that the target drugs seem to work on (my dad is Chinese) then they were leaning towards taking just the drug and skipping chemotherapy altogether. Is this a wise decision?!?

Also, how do people keep up their weights? My mom says that my dad doesn't feel like eating meat much (so I guess he's not) and he's eating a lot of fruits...but I'm really concerned about weight loss.

I'm angry. Really really angry. And I don't know how get over the anger of this.

[lapsaria]

Sorry, I guess I have more questions.

When people say that Stage IV is incurable or inoperable, what does that exactly mean? Does that simply mean it's spread too far? If chemo and drugs shrink tumors, is it not possible to shrink them complete away? Or can't you shrink them down small enough to operate?

[dano]

lapsaria; Welcome again to this forum. I had all the same questions when I was diagnosed with stage IV NSCLC, I also was a non-smoker. And about the time I was diagnosed I started loosing weight, I lost about 45 lbs in a two month period. I was very surprised to find in an MRI of my brain that I had mets there too. I had a lot of friends and family trying to help which was nice but made it confusing, try this ,use that, I read this ans that. I stayed with the doctors plans but kept them informed on how I was feeling and they made the needed adjustments. The chemo was hard to go through but I felt it was needed, I was coughing so bad. they found that I had blood clots in my lungs produced by the cancer, they put me on Lovinox injections and that helped turn me around quickly. I could start sleeping though the night. I had whole brain radiation to stop the brain mets. Then they change chemo treatments to Alimta and I started feeling better. I took the families advice and and got a second opinion, which my doctors supported me doing. And I found that I had good doctors at a capable hospital that could handle cancer patients. Some places offer more treatment but you have to have your own money to cover the extra costs. I'm still on Alimta and working full time for the last year, and doing quite well. Hope this can give you some encouragement.
God Bless
Dan

[lapsaria]

Dano,

Thank you so much for your answer. Your words bring up a lot of hope and encouragement and I copied some of your post to show my dad that.

Since you are on the other side of this, can I ask what you found to be most helpful/less stressful for your friends/family to help you? I imagine it must be very exhausting talking about how you're feeling or treatments/doctors constantly with people, but is it better to pretend that nothing is wrong? I just want to know what I can do to be supportive, without being smothering.

My dad's scans came back today negative for the cancer in the bone and brain (although they're not completely positive on the brain yet. It was done with a CT scan--I guess a PET scan is more accurate? But that would have to be completely paid out of pocket by my parents). I think this is good news right?

[dano]

lapsaria;
The only way I know of for checking the brain is with an MRI with contrast, I hope he can get test there.
As far as helping goes, just be respectful and find out how he would like you to help. I had a friend and a brother that would bring me juices and potions, some of it I tried but I was already going through so much I did not really keep up with what they wanted. I was glad that most of the family was back on the main land. As my breathing got better with out the blood clots in my lungs things got better little by little. Eating was difficult due to my tendency to want to throw up. Just a smell could set me off in a bad way, I survived for a while just drinking ensure. Little things that helped were having something I really enjoyed to eat or drink and it had to sound good to me or just the thought of the wrong food could set me off. The first thing that sounded good to me was a chocolate milk shake at McDonald's, but no hard food. Later when it sounded good I had fries with the shake. And that's how I came back to eating, junk food. But I was eating and slowly started gaining the weight back, and I have gained it all back. I'm not saying he has to eat junk food, just what he thinks sounds good. Do things that makes him feel better what ever it is. It would be helpful to know where you and your dad live, that can play a part of his situation.
Dan

[lapsaria]

My dad currently lives in Taiwan. I brought up your point about the MRI to check the brain since everything else I read said the same thing...unfortunately, I don't know what's going on, but it seems that CT brain scan is the norm in Taiwan and they have decided not to do anything else after the CT came back negative for bone/brain. The PET scan also showed nothing in the brain but likely cancer in the adrenal gland, lymphnodes near the aorta, lymphnodes in the chest. My brother's email also said that the main tumor was so large that some of the cells are already dead? dying?

They're starting him on chem and avastin tomorrow and then I guess possibly exploring moving back to the states...but if first-line treatment is pretty standardized for this stage, then I'm not sure how it'll be different. My dad doesn't want to move back unless there's going to be a tangible benefit in moving back to the States.

The gene sequencing for a gene mutation also came back negative so they've ruled out TKI drugs.

The situation is just so absurd. IT doesn't seem real at all. I just keep thinking he's going to get to be one of the lucky ones who respond to treatment.

[lapsaria]

So my dad started chemo and avastin last night. So far, he appears to have no side effects (or he claims he doesn't even feel it). Because it's his first time though, they went really slow--and I think diluted it so it would take longer?

I was wondering if anyone could tell me about the side effects of chemo and how long it takes for them to show. For instance, those who get nauseous from it, are they immediately nauseous? Does it take a day to show? Etc.

And for a slightly more cheery question, my brother has asked me to invest in some stylish hats for my dad (in case hair loss occurs from the chemo). Does anyone have any experience or knowledge on buying these? I'm afraid my experience with buying hats for men is somewhat limited.

And at the same time, what are some good supplies for people going through chemo? Hats? Scarves? Mittens? I remember my grandmother being really cold when she was going through the process (for pancreatic cancer), but would like some ideas since I can't remember much.

[dano]

Hi
For me it takes about three days to feel it on average and that is with Alimta, but it has had little if any effect the first couple days, the 4th, 5th days have been the worst. As I got more used to the chemo, I find doing things I like doing such as going camping helps keep my mind off of me, otherwise at homw that is about all I do think about. Was your dad ever in the military? Get him a hat for what ever service he was in, for me I never served but my son is in the Navy, so I wear a Navy cap, so without hair and a military cap fits well here in Hawaii which has a high military presence. Most people assume I'm in the Navy. The special hats seem to make people look sick, but it is mostly warm here and I don't worry about a cold head.
Dan

[simplyklb]

So my dad started chemo and avastin last night. So far, he appears to have no side effects (or he claims he doesn't even feel it). Because it's his first time though, they went really slow--and I think diluted it so it would take longer?

I was wondering if anyone could tell me about the side effects of chemo and how long it takes for them to show. For instance, those who get nauseous from it, are they immediately nauseous? Does it take a day to show? Etc.

And for a slightly more cheery question, my brother has asked me to invest in some stylish hats for my dad (in case hair loss occurs from the chemo). Does anyone have any experience or knowledge on buying these? I'm afraid my experience with buying hats for men is somewhat limited.

And at the same time, what are some good supplies for people going through chemo? Hats? Scarves? Mittens? I remember my grandmother being really cold when she was going through the process (for pancreatic cancer), but would like some ideas since I can't remember much.

Hi,
Do you know the name of the chemo drugs they are giving your dad? My mom had Carboplatin/Taxol/Avastin to start off her treatment. The cocktail did nothing to her cancer. Then she had two rounds of Cisplatin/Etoposide along with 35 radiation treatments following that. She was off treatment for nearly eight months. The onc put her on Alimta whoich dd nothing to stop the growth. Now my mom takes Tarceva once a day. She has a CT scan on Mon., Oct. 12th to see where we are.

Mom's oncologist told us that she would never have a clean scan. He also told her that her cancer was not curable. We treat it like a chronic condition.

The effects of chemo do not normally start showing up until three days after the infusion. And it depends on the drugs given.

Kristi

[lapsaria]

My dad is on cisplatin & pemetrexed (alimta). He's having a check-up tomorrow since it's his first time doing chemo. They'll also do an x-ray at that time to see if there's any change in the tumor--although one week seems kidn of fast? They don't want to do a CT scan since they said it wouldn't be good to hit his body with radiation that often. He'll go back in two weeks for another round of the same chemo treatment with an x-ray then. Is an X-ray the usual follow-up to evaluate tumor reaction to chemo or should I ask my parents to push for a CT scan?

I'm sorry to hear about your mom Kristi. I hope the CT scan on monday has some postive results. My dad apparently does feel a little sick, but it doesn't seem to be too limiting. His treatment was all day Saturday and he was back at work on Tuesday. Of course, they also took it really slowly on Saturday. I assume in future treatments, the effects might hit harder since it's the same dosage in a much shorter amoutn of time.

Is it just me or do chemo drugs just seem like a crapshoot? I feel like everything I read is something along the lines of "try this drug, if it doesn't work, try another, and repeat, with nothing sure to work or not."

My dad was in the military. But only in Taiwan and only because everyone is required to do some time in the military! Still, I like your idea Dan. I agree with you that I've never been fond of those special hats even before this, because they seem to mark people as being sick. I currently work for the State Department, so I'm going to see if I can at least find him a cap here with the logo on it.

Sometimes I feel like it's completely fine and none of it seems real and sometimes I find myself crying at work or in bed. Sometimes I read the forums and the stories are incredibly encouraging, and sometimes I just get depressed reading them, because the chances of that happening for my dad seem so small. I know you're supposed to be hopeful and think optimistically, but everytime my family's done that, it's been followed with bad news that feels even worse. They didn't even think my dad had cancer first since the first fine needle biopsy came back negative. Then we thought it was the early stages since he had absolutely no signs of weight loss or tiredness and only coughed once or twice a day. Then we at least thought he would have the mutation since he was Asian and a non-smoker. It's tiring to think positively and then I feel really guilty. I don't want to mourn my dad when he's still here-it's so morbid and it seems unfair to him.

But then he's walking around with my mom at night and he still has no signs besides a cough and some tiredness; his weight is pretty stable--and it's like ok, maybe he's fine; maybe he'll just be fine. And then you hear about how the end comes so quick or whatnot. The doctors told us 4-6 months and I just find myself counting down and I don't know how to stop that. But if he's walking around fine now how can it only be 6 months? I guess I don't really expect any answers...I just need to know I'm not a crazy person from others in the same spot. Because I can hear myself in my head and if I think about actually saying these things to people, I feel like I'm crazy.

[simplyklb]

Hi,
My mom has not had a chest x-ray since she went thru radiation last year. My mom has been getting CT scans about once every two to three months. That is how the oncologist can tell if her cancer is growing or not. Thanks for the good thoughts about the scans on Monday. We will get the results on Tues.

Non small cell lung cancer can be really resistant to chemo and radiation from what I have read and seen firsthand with my mom. Yes, it seems that chemo can be a crapshot. I just call the cancer stubborn!!!!

Let's hope that the cisplatin and alimta can be the winning cocktail for your dad!

Kristi

[simplyklb]

Hi,
Is your dad being treated by the military? Or is he having to get his treatment elsewhere? Any way the military can have his reassigned to the United States?

Kristi

[sallythenurse]

Lapsaria...
Please see the link below. Mass General has a program to test lung cancer tumors for specific mutations that may respond to new treatments.
You must get your Dad there. Good luck. Sally

www.massgeneral.org/fingerprint