New and confused.

[Guest]

Hi, my name is Anya. My best friend was diagnosed with lung cancer a week ago. He's 49 and was a very heavy smoker. He seemed perfectly healthy until I took him in because he was having pain and couldn't move his arm. Then after tons of tests I was told that he had a small tumor in his lung that has spread to several spots in his brain and to the sack around his heart. I was in shock and know very little about cancer so everything they told me went over my head and ended up a jumbled mess. He's already started the treatments. He has had 1 chemo treatment and is on his 2nd radiation treatment for the brain. They also said he would keep getting fluid around his heart. They told me they didn't expect him to make it past 3 months.

I really don't know what to ask. I'm still kind of in a cloud. And all of this medical stuff goes over my head. But I'm his only family so that means I will be taking care of him through this alone. I need to know, is there truly any hope for someone who's cancer has already spread this much and is only just now being diagnosed?

Please help me prepare. I need to be prepared for what comes next. Right now he's feeling really good but as he gets further into the treatments will he get really sick? What should he be doing or not doing during treatments? What do they usually do next if the treatments don't work? His bills are coming due, should I apply for disability for him now even though he's still feeling pretty good at this point? I read that disability can take 6 months. So I don't know what to do.

I know we need to not give up hope. But what if they are right and in 3 months we lose the battle. What will he be facing when the end nears? I'm not prepared to watch my best friend die. I don't know if I can be strong enough for both of us but I guess I have no choice. I don't want to go into this blindly. So I find myself coming here in hopes of finding some real answers, no matter how hard they may be to hear.

[RandyW]

I need to know, is there truly any hope for someone who's cancer has already spread this much and is only just now being diagnosed?

There is hope in every breath and every new day!!! Research goes on fast and furious for fighting this disease!!

1)

They told me they didn't expect him to make it past 3 months.

Don't believe that one !! Doctors don't know how long anyone will live. Welcome to the place no one wants to be but is glad they are at right now.

2)

I was told that he had a small tumor in his lung that has spread to several spots in his brain and to the sack around his heart.

TH fluid should be able to be taken care of by a surgical procedure called a pericardial effusion. A tube is inserted into the sack around the heart and the fluid is draine out and tube removed!

3)

should I apply for disability for him now even though he's still feeling pretty good at this point? I read that disability can take 6 months. So I don't know what to do.

Yes apply right away because it is not retro active

4)

He's 49 and was a very heavy smoker.

Try and quit!! Chemo works a Heck of a lot better if You don't smoke!! This is scientifically proven also!

5)

I'm not prepared to watch my best friend die.

Don't be prepared to die Live laugh and Love Enjoy life to the fullest This is a new normal we have to get used to. IT s not a fun normal but a new one. Anya this is a difficult adjustment in life. Just a hurdle to overcome. You are going to get a lot more advice from a lot of people this weekend or Monday. Its all good advice! Try and check out the inspirational forum and the good news forums when Ya get time. They are full of inspiration and Hope!! You have a lot to deal with and yes it is overwhelming at first, but when things start to settle a little bit you will feel a little bit more comfortable with things going on around you..

[MsC1210]

Hello Anya and welcome

Your post touched my heart as I was in a very, very similar situation just over 3 yrs ago. I know what you are going through and I am so glad you found this site now!

Please know we are here for you and we will do our best to help you understand things and answer all your questions and offer you our best advice. There are a lot of very, very good people on here and they are always willing to help in any way they can.

One thing I would like to say now is to take a notebook or small tape recorder with you to all of the appointments and write everything down. Keep track of tests, results, treatments, dr visits, EVERYTHING. Get copies of all the test results so you have everything in one place when/if you need a 2nd opinion (We all highly recommend 2nd opinions and even 3rd or 4th!!!)

Keep the hope and let us know how we can be of help

Many hugs and prayers to you and your friend,

Christine

[ts]

Social Security Disability takes 6 months before they will start paying, assuming eligibility - which it sounds like he has.

Check to see if he has short term or long term disability either on his own or through his employer - they may have a different waiting period.

There are also some other financial assistance opportunities out there. The American Cancer Society has booklets that outline some of these - for instance, if he has no income (or low income) they may be able to treat him with no out of pocket costs, some prescription drugs can be provided free or at 50% of the copay charge, sometimes local non-profit cancer support centers have some $ to offer, as well as transportation assistance, free social workers and therapists for both of you to talk to, even free housecleaning services.

It's a lot to look into while you are concentrating on the treatment itself - it would be great if you have a friend or family member who could help? They might not be up to helping with your friend and the treatment, but this is more like a "game" and might appeal to someone else.

During treatment - don't be afraid of asking lots of questions - the same ones if needed. A couple of points - your friend needs to keep hydrated, get plenty of rest, keep his weight up, and stay nausea and reasonably pain free. This may require medication and lots of small meals/snacks. You may get a lot closer than you want as primary care giver - this includes asking about bowel movements! One of the worst side effects of pain medications and some chemo is constipation - stool softeners and stronger stuff like Milk of Magnesia may be needed along the way. Use them as needed and don't let this get ahead of him. For many of us, this contributed to some of our worst days.

You, my dear, need to be able to ask for help. You can start with the social worker at the hospital, as well as here. If you let us know where you are located, we may be able to direct you to some more specific resources.

Take care of yourself and let us know what you need and how your friend is doing.

[Barb73]

Welcome, Dear Anya,

After reading the other posts, there is not much of import that I can offer. They have been most thorough in their insights.

Except, there is one thing, and it is that over four years ago, my husband was a stage IIIB, and it went to a Stage IV within less than a year. It had metastasized to his neck, and a bit later, to his brain.

He is, after over five or more regimens of treatment, doing well and still (albeit a bit tired) actively involved in everyday activities. We are thankful to God, and the wonderful doctors.

You will receive much support here. This is a great site and has many people ready to help.

Please let us know how everything is going with your best friend. It is most always confusing at first, but as treatment plans emerge, things do settle down somewhat.

Reading about other journeys with this disease, you may be enlightened as to which questions to ask of the doctors.

When Bill and I began this "sojourn," we didn't know which end was "up," nor did we have a clue as to what to ask. This community is a very good place to begin. There is an oncologist, Dr. West, who is excellent, and most helpful in answering questions.

Barbara

[cat127]

You've been given a lot of great advice. I will add one small correction, since you specifically said that the medical terms and such are very confusing to you.

The fluid around the heart is not corrected by a pericardial effusion, it IS pericardial effusion. One method they may use to correct it is a pericardiocentesis. You may also hear about a pericardial window as another method to treat it.

I understand how hard it is for many people to deal with the medical terms, it is like a second language and it helps to be as fluent in it as you can. I spend a lot of time helping family and friends out, since I'm bilingual in English and Medical.

I hope you look around and see all the people here who are Stage 4 and see how well they are blasting away at the numbers. My sister is Stage 3b and doing better than I'm sure most doctors would have told her she'd do. I'm grateful that her dr was not one of those to stamp an expiration date on his patients.

Take care and your friend is obviously quite lucky to have you!!

[recce101]

Hi, Anya, welcome to the group. The first thing you should do, as others have said, is forget about this 3-month thing. Lung cancers are NOT all the same, and some respond very well to treatment. We have members here who were given this 3-month or 6-month line several years ago, and you'll probably be hearing from some of them.

Right now he's feeling really good but as he gets further into the treatments will he get really sick?

Not necessarily. The most common side effect is fatigue, and the others vary a lot depending on what specific drugs he is being given. If you can find out the names (they're often given in pairs) of the chemo he is receiving, we can be more helpful. Nausea is not nearly as common as it once was because of special "premed" medications given by IV just before each chemo session. I've been on one treatment or another for 30 months and there's never been a day when I was unable to get around and do something productive.

Best wishes and plenty of Aloha,

Ned

[SandraL]

Hi Anya and welcome to the group. I am so sorry to hear about your friend. He is obviously very lucky to have you looking out for him. You have received lots of great advice already. Just take it one day at a time. Everyone responds to treatments differently so you just need to wait and see what happens and most likely it will be pretty bearable. Do have him drink lots during chemo as that helps. Even at the expense of eating, drink all you can. Please take care and let us know how you and your friend are doing.

Sandra

[Outrider1]

Just a note about Social Security.

All lung cancers are considered permanently disabling by the Federal Government and SSA. As a matter of fact I can't think if any cancers that are not on the list. The list is available in their webpage.

Apply for SSI (Supplemental Social Security insurance) and SSDI (Social Security Disablility insurance) at the same time. The ssi starts immediately (if you are qualified, ei. make no or very little income) and comes with medicaid. The medicaid disappears for 24 months when you start to receive the SSDI with has an (arbitrary no reason for it) waiting period of 5 months and you do not get any back pay for the months you wait or if receiving SSI the difference in the two.

I had a nationally know law firm tell me that you have to be destitute to get what the federal government deemed by law that you have to contribute to. And they were not lying. I know from experience. SSI is a pittance (I got $637 a month...tell me that is enough for a household with a 16 year old and mother with cancer). My disability is not much more, which is ridiculous considering how much I have paid in since I was 16 years old, served in the military ( a lot of people that have not served do not know that military members pay the same taxes) and worked my butt off and realistically speaking not expecting it to be paid for the next twenty years. (Not being a downer, just realistic. I would love another twenty and will take it anyway I can get it with or with out the Federal government's help)

If he is able, he needs to make the claim himself or ensure that you have power of attorney to do it for him as it will just make it much easier.

If you need other assistance of any kind from financial, to insurance to just about anything, here are a few places I either visited on the web or spoke to on the phone.

Any Cancer Treatment Center of America. The counselors on the phone have tons of website resources at their fingertips that they will give you. They will e-mail the entire phone conversation to you so that you have all that information.

United way is only good for telling you about the local services available in the state. That is all that they do and they do not have a complete list. It can still be a help as they may have something listed that no one else dose.

Contact the Health and Human Services dept. and the Aid for the Elderly and Disabled Depts. of your state. They may have additional programs

I also believe that Lungevity has a links page as well as the folks over at the Lung Cancer Alliance page.

Don't bother to go to the ACS (American Cancer Society) except for very basic information on the types of cancer and possible care supplies.

AS far as the information part of it...excellent idea of taking a notebook or a recorder. I would take the recorder as it is hard to takes notes in that setting and with the recorder you rewind and play back anything that you don't hear or understand for further research. Be very pro-active. If you don't understand something make them explain it and don't take no for an answer. If you still don't, get another opinion, and another and another until you understand it the way that you need to. These people are being paid (one way or another, insurance, medicaid/care, out of your pocket, whatever) and they work for YOU. They sometimes forget that.

If you do research on the internet,DO NOT read and believe the statistics. The majority of cancer statistics are 20 years old and as cancer treatments have really changed with in the last 5 to 10 years there is not enough data to support new statistics. Statistics also do not take in to account every person who does not fit into the average. They are an average of all treatments and all people. Also be reminded that statistics can be and are manipulated to show certain things (I learned that from a college course in theory and statistics) that the researcher wants and are therefore suspect. Take all statistics with a large grain of salt.

When you do research on various treatments, modalities and types of cancers try to stay with independent, verifiable sites. By that I mean stay away from the sites subsidized by the government or large pharmacuetical companies such as (unfortunately) the American Cancer Society and the National Institutes of Health. Independent researchers do not have to toe the "Party line" so to speak which means that they can, will and do publish findings contrary to the majority that may be of value and that they are publishing based on the interest to helping and not motivated by how much money they can make. A word of warning, there are a lot of sites out there that seem to be legit, but are not. If it seems like a miracle cure or to good to be true, they are probably just that. A way to part you from the little money you have. You can verify the information by looking for material the has been published in well know medical journals and air on TV such as Discovery health (just remember to back up what you hear with written accounts in the journals).

I was diagnosed with SCLC (small cell lung cancer) which is virulent and spreads like wild fire. If I had laid down believing what the statistics say, I would probably not be here today. I decided right then and there, that statistics were not going to define my life and I was going to do whatever it took to get whatever time I could and damned the statistics. And that is what I am still doing.

Your best friend is not a statistic and don't let anyone, doctor, friend, stranger, treat him as such. He is a human being and therefore that makes him worthy of being more than a number.

This website is one of the best at giving thorough and correct information without espousing gold standards of treatment and care (there are no gold standards as nothing works for everyone and you have to try as much as possible to find something that works) and for the loving, caring, non-judgemental support. These people are absolutely fabulous and will help you in any way that they can.

If there is anything I can help you with just feel free to ask. Also please know that, although I may seem a little abrupt (in your face may be a better way to put it, lol) and a downer; that I don't mean to be. I have an aversion to giving false hope and am committed to giving as much correct, up-to-date information as possible as realistically as possible.

I am living proof, as are a lot of people on this site. that what the statistics say are bunk. Be pro-active, try to stay positive and if you need some support in that, visit here.

Dawn

[Guest]

Thank you everyone for replying! I appreciate it SO MUCH! It's been so exhausting trying to take this all in and even half way act like I know what is going on. I am so relieved to hear that there is hope for longer than 3 months. The doctor said his cancer was inoperable, but how do they determine that? Does he say that because it's around the heart too? They never did a biopsy either, don't they need to do that anymore?

Yes I do remember them mentioning putting in a window if the fluid comes back. And I'm glad to hear that he may not get sick during treatments. That had me worried when they started giving him all these pills for his stomach already. They gave him Prilosec, Prochlorper, and Zofran for his stomach.

Thanks so much for the info on disability and SSI. I have a pretty good idea of what to do now. It sounds like disability doesn't give you enough to be able to pay bills and get groceries. I guess they expect people to make a choice between utilities or food! I will look into the disability right away, it'll be better than nothing at all. But now Larry seems to think that since he feels real good that he's going to go back to work in 2 weeks. He thinks that as soon as he's done with this 2 weeks radiation treatments and another chemo that he's done. But he's not done is he? Don't they then have to check all the spots again to make sure they are shrinking? Don't you still have to continue treatments to try to stop it from spreading again? It's almost as if he thinks the cancer will just be gone forever after he completes these treatments in 2 weeks. I don't know maybe this is a denial stage? I guess I'll just let him be in denial for now, it seems to make him happy. And he did quit smoking but he is still drinking beer. They had said his liver was damaged from some sort of back flow or something. So I just wish he'd leave the beer alone.

I will also take the advice and get a recorder. Since he started treatments I haven't seen any of the doctors. While in the hospital he has talked with them a few times when I wasn't in the room but he doesn't always tell me what they have said. The few answers I did get from them before were very vague. Ever since they told Larry he has cancer he's refused to really seriously talk about it. So I don't know what kind of chemo he's getting either. I didn't even know there are different kinds of chemo, that's how in the dark I am here about cancer. I did get a document taken care of to give me power of attorney for health care for him. So now maybe I can get more info out of the doctors the next time I see one.

Larry's feet and ankles keep swelling up really big. So he's keeping them elevated but is it better to just elevate them or should he be doing some walking? They are giving him Dexamethason. I'll be sure to keep at him about drinking enough fluids (well all fluids except beer). He's not constipated yet but today I'll get him some stool softner and milk of magnesia so we are prepared.

Again, thank you to all of you for helping me with this stuff. Thank you!!

[cat127]

Regarding the tumor being inoperable - what it boils down to is the fact that even if they could remove the tumor, it would not positively impact the course of the disease and could possibly negatively impact it as it is a difficult surgery and he would then be without a lobe (or more) of his lungs. The fact that he has cancer cells in places other than the primary lung tumor, tells them that the cancer has gotten out of the lung and into the blood stream. Some liken surgery at this point to closing the barn door after the horse is out. You will also hear doctors refer to it as a "local treatment for a systemic disease" - meaning that he has cancer in places other than the lung but the surgery only treats the lung.

Does that help at all?

Again though, you need look no further than this board to see people who were not eligible for surgery and yet are defying the odds every day. So - always reason to hope.

I'd say leave no stone unturned as far as the financial aspect of it. The worst you can hear is that he doesn't qualify. I have a friend who lost his job just as he was diagnosed with lymphoma. The social worker at the hospital he goes to for chemo has been an ANGEL and found him all sorts of aid to help him with co-pays and such.

Can't say enough, your friend is very lucky to have you.

[Patti B]

HI Anya-

Welcome to our family altho I am sorry you found the need to be here.

You have received so much good advice from other members but I just wanted to reiterate the fact that you DON'T listen to statistics!! Your friend is NOT a statistics, je is an individual. I was one of those people who was told 12 months tops and I am still here, annoying people after 29 months!!! And I just got another stable scan!! I do whatever I want to do, albeit a little slower sometimes, but I am far from being bedridden. So please, please, forget you heard that (I know thats easier said than done) and continue to have HOPE every day!!

To echo what CAT said, your friend truly is lucky to have you by his side!!

Please keep us posted on how both you and him are doing!!

Hugs - Patti B.

[cat127]

There was a great line on Grey's Anatomy last week, when talking about someone's cancer diagnosis, one of the interns said "Odss are, the odds are crap". I like that line. And she was referring to them not being worth listening to, not that they were bad odds. Just to clarify for those that maybe didn't see it.