Bummed out

[JoyceH]

I need some encouragement. My latest ct scan showed some growth in my tumor. My onc wants to put me on Taxol, but said the chances of it working is only 20% now. He's so discouraging. As I was digesting this news, the nurse is ordering a bone scan for me, and tells whoever she's talking with that I'm terminal... not something I wanted to hear, even if it is true. I cried all the way home from the doctor. He's not open to me trying Iressa it seems. I'm tired of his negative attitude. I think the only reason I still go there is that there's noone else around here that takes Medicaid, and I love the nurse who takes care of me during chemo. She's absolutely wonderful- very encouraging, positive, etc. I'm really bummed because I keep thinking I'm going to die from this. I have 3 kids, one is only 2. She won't even remember me. I'm just worried how my kids would handle this. I'm very close to my 14-year old daughter, this would devastate her. It makes me so sad to think about this. I know I'll be fine, I'll be in heaven! But still, to think about missing graduations, wedding, my daughters going through labor and having babies without their mom being there. I'm sorry if I'm depressing anyone. I'm just very upset about all this today. So frustrating having this disease. I never smoked. I don't deserve this! (not that anyone does...)

Joyce

[Angie Daughter of Bill]

My Dad is stage IV. He has been on Carboplatin(one infusion each cycle) and taxol. We just returned from the Dr.'s office. He had shrinkage again. He had a 55% shrinkage after two rounds. After the fourth round,he has had another almost 20% shrinkage!! It is worth trying the taxol. It really seems to work for some.

As for your Dr., I am sorry that he is so negative. That really puts a damper on your spirits, I'm sure. You might talk to him and tell him that you don't want to know all of the dismal statistics right now. Or, we could just gang up on him and MAKE him change his attitude.

Have a blessed day!

Angie

[Ry]

Ah Joyce~

First, terminal just means the thing most likely to cause death, doesn't mean it will, so put that nurses comment out of your mind.

Second, Denver's a big city must have another oncologist that takes Medicaid.

Lastly, you have to advocate for yourself. You need to make eye contact with your doctor and tell him that you want to try the Iressa. Tell him what you told us, you have kids and you want to try whatever will keep you with them. Look him in the eye and ask him what possible reason he would have to refuse you a drug you want to try?

I know it's hard. Feel so bad for you...

Rochelle

[Snowflake]

Joyce,

SHAME on that nurse for even SAYING that word! (Tattle, girlfriend, that is unacceptable and unethical - talk to the office manager, that is something to NOT be tolerated in a doctor's office and should never happen - and should never happen AGAIN.)

She was right, you are terminal, but so is everyone else. The one big kicker about life is that you don't get out of it alive...

You will dance at that 2 y/o's wedding! You WILL see your grandbabies, graduations, first time behind the wheel. Joyce, you will see all that because God has a sense of humor and is just testing you now for the stress you will have later with those kids!

Keep looking for a new doctor, see if anyone in the area helps with hardship cases, check the American Cancer Society in your area and see what they can do to help. Do NOT give up, do NOT give in.

I never smoked, either. I don't want to be here - what I am is PROOF that it isn't just smoking that causes lung cancer. I am here to be the "this could be you" picture on advertisements (I need to lose some weight and clear up my skin before then, but still). None of us deserve to be here, no one asked to be here...and here we are. Life has handed us all a bunch of lemons - here's to opening up a lemonade stand and enjoying our summer!

When you reach the end of your rope, tie a knot and hang on. ~Franklin D. Roosevelt

C'mon Joyce, get out of that rut...back up here on the road with the rest of us! We're waiting....and more than willing to pull you back up here, just reach and hang on!

Take care,

Becky

[-Cheryl-]

Dear Joyce,

Don't worry about bringing anyone down. I was well on my way, but not from your post my dear. I am home sick with a blasted cold, started my period, and don't get me started about the cancer. Everyone is entitled to feeling "Bumbed" sometimes. I went outsde to read, and just broke down in tears. My husband left and came back with the largest three musketers candy bar I have ever seen! Only I don't think chocholate will fix this. Sure would be nice if chocholate were given to cancer patients instead of chemo- heck it is probably just as effective. Ha! Anyway, I just wanted to say that sometimes medical professionals will exaggerate a situation when dealing with insurances and medicaid to get the treatment or scans we need because they are not deemed medically necessary. Joyce, I think just about everyone with a cancer diagnosis is considered terminal? Especially, with only a 13% survival rate for stage 3 and up! Lets prove them wrong, o.k.! I am praing for you and your children.

Cheryl

[john]

Try the center below. Some centers give free 2nd opinions. I think all NCI designated centers will take medicaid.

I am pretty sure my mom (she was retired) was on medicaid and she had no problems with insurance and finding good doctors

http://www.uccc.info/CancerCenter/conte ... ppointment

COLORADO

Paul A. Bunn, Jr., M.D.

Director

University of Colorado Cancer Center

University of Colorado Health Science Center 4200 East 9th Avenue, Box B188

Denver, Colorado 80262

Tel: 303/315-3007

Fax: 303/315-3304

(Comprehensive Cancer Center)

[Guest bean_si (Not Active)]

Big fat curse words for the nurse that used that terminology. Yeah, we know it's just a word and that we are all terminal but we don't need to hear on bad days.

I am an extremely shy person and understand how hard it is to stand up to your doctor and say, "Look, I want to try this treatment." It takes so much energy but it has to be done. Joyce, I sure want to see you raise your children to adulthood - all of them. I want you to be free from pain and worry - same as I want for myself and for all of us.

You have to let your doc know that there is a GROUP of people watching him, listening to how he treats you. I do believe that will make a difference. Tell him about your support group, tell him we want you to get the best treatment. And has been said, look him in the eye, tell him your truth - about your family. Look him straight in the eye and don't let him dare turn away.

I will be praying for you. I will picture you in my mind and ask both God and the Healing Buddha to grace you with their blessings - with health.

Take care,

Cat

[Haylee_38]

That was very rude and wrong on the nurses part. They are so not

god and so not always right. My friends mother had what the doctors

called a terminal cancer{ not sure what type } and actualy told her she

would be lucky to have 6 months left. Patty told them thats what you say

and showed them how wrong they were at saying such nonsense. She

turned that 6 months into 7 years and then passed away from

pneamonia { spelling???} not the cancer. Dont listen to that nurse and

please do not give up. Haylee

[Margaret]

I know that many people at my Cancer Centers (UCSD - San Diego and LaJolla, California) are on Medicaid, because I have overheard them say so. You must seek a better medical support team...I know it's hard, but it's your life and it's your children's future. If you are just unable to do so, find someone who will advocate for you. Don't give up on this. You deserve better care and don't dwell on the negativity of your present team. At one point, I had a doctor who answered everything with, "You were told that you couldn't be cured." Well, when a person hears that once, it never has to be repeated and it's not an answer...I moved out of her care. I wish I could do more for you, but I will pray for you.

Margaret

[MO_Sugar]

You and your family are in my prayers also. Make memories with the baby with pictures, videos, tape recordings, whatever you can! I am doing that with my grandson (4years old) and we are having SOOOOO much fun doing it! We have tapes of us playing tonka trucks and flying kites, picnics in the park and both of us swinging at the park, trips to the zoo and trips to the store, all sorts of things that he will be able to go to to remember Grandma. I hope to be around long enough for him to remember me BUT in case I am not he will have lots of stuff to look at and listen to.

God Bless,

MO

[MayFrog]

Hi Joyce,

So sorry we have to meet this way, but so glad we did!

I can relate to almost everything in your post. I just had my first CT after starting chemo, and will hear the results tomorrow. Not knowing whether this treatment is being effective or not is just a nightmare. This has been the worst time I've had since my initial dx in April. I, too, worry about my kids....and at times let sadness and despair take over and start thinking of all the things I would be missing, instead of concentrating on the here and now and appreciating all the things i'm NOT missing. It's only human to think of the worst, but we can't....we musn't...dwell on it. A good cry helps me so much....it's cleansing.

Hearing that word "terminal" (especially from a so-called professional) is a shock to the system, even if we know it applies. It is not a term to be bandied about lightly....this nurse does need to hear that it is unacceptable...I'm a former nurse myself, and I know many in my profession don't have the common sense or tact of a stick of gum.

At first, I also had a few docs who were very negative and resigned to a bad outcome....I dismissed them from my mind. I am very lucky to have an oncology team of wonderful, upbeat and optimistic docs and nurses on my side now...and I am a "free care" patient, as I was unemployed at the time of my dx and had/have no insurance. I guess I'm lucky living in Boston, where there is no shortage of great medical care, no matter your financial circumstance. A few who posted gave great advice as far as finding a new onc and new support system....take their advice....call around, make noise, be a squeaky wheel......this is your LIFE.....take control of it.

In the meantime, I'd go with the Taxol despite the pessimism voiced by your current doc. Push for the Iressa if that's what you want. Don't let numbers and statistics guide your decision.

Keep us posted....keep the faith. Good thoughts going out to you....bless you and your kids.....Mary

[natalie]

Joyce!

That nurse is so lucky I don't live in Colorado! I want to write a letter to that woman. Joyce, weren't you the one that posted the list of LC survivors? I was able to see the link and there were at least 20 Stage IV survivors on that list. I also agree with Cheryl saying that sometimes personnel exaggerate a situation to get better services and treatment.

Anytime you think about statistics too, remember, they are SEVERLY outdated and skewed. I took a class on statistics in college and remember coming out of the class thinking that there's no reason for statistics because most of the time they are not accurate. There are also people that end up dying of something else, but when researchers do their follow up, they assume the person died of cancer as opposed to natural causes, heart attack, car accident, etc. The statistics are also taking stats of people up to their 90's. My 95 year old aunt has colon cancer that ...say she dies of natural causes, I'm curious as to which category she will fit in when her time comes?

I'm so sorry that any of you are faced with the battle of this disease. It's not only the battle of the disease, it's the insurance, lost wages, stress, heartless doctors, etc. You are so strong...You can beat this. I know you can.

[Fay A.]

Joyce,

The Nurse could use a crash course in Sensitivity Training. I really DO understand how disheartening the news of continued growth is for you, and it saddens me that you are feeling so down. Having said all of that and meaning it from the depths of my soul.....

The time has come for you to make a big decision, and it's actually the easy part of what lies ahead. You need to ask yourself if the life you have is worth saving. I believe it to be, but that isn't going to do very much at all towards accomplishing that goal. YOU have to decide if it's worth the fight you will have to put up in order to have a chance.

Your Physcian is not meeting your needs....and his having a good chemo nurse isn't a good enough reason to stay with someone like him. WE ARE TALKING ABOUT YOUR LIFE.....not a bad hairdresser whose mistakes will grow out in a matter of months. Having Medicaid isn't the greatest insurance, but you know what? During the first 3 years of my illness some of my Docs were telling me that it was too bad I couldn't go on Medicaid because it covered more and paid better than my medical insurance. And they were right! So I had to become very knowledgable about what my options were, the places I was most likely to get what I needed, and how to document my efforts to obtain care, how to file a complaint that would be dealt with and not shoved under the rug. And Joyce, if I can do this to keep on living you can do it, too.

It sounds to me like you are more afraid of the unknown than anything else. I know....it's frightening. But you are so worth the effort it will take to get the care you should be receiving. It takes work...hard work...and you have to get beyond the idea of what is "nice" and "not nice" behavior. I'm not suggesting that you become hateful. But I am saying that as long as you allow them to push aside your concerns then they will continue to do so.

Is the life you are trying to save worth the work it will require to do so? Damn straight it is....

Now what can we do to help?

[Andrea]

Joyce,

We need to find smoeoen who does witchcraft and put a hex on that witch!!! Please do NOT let her discourage you. We are ALL terminal sometime, so it really is a silly term. Also statistics shmatistics. Like a surgeon once told us, "who cares abut statistics, treatment either works for you or it does not". Brian's mom (my mother in law) had a 5% survival chance 30 years ago. She is alive and well. My boss's father had a 95% survival 5 years ago, he is not alive.

I concur with everyone to try to find another dr! Each dr has their own style, so it can't hurt to get a second opinion!

Lots of hugs to you rchildren!

[jamie]

Joyce,

Keep your head up. I know it is hard, this IS a very bumpy road. One day we get great news, and things keep looking up... and other days...well your having one. Try to keep things in perspective. Try the Taxol, you never know. And if it dosent work, try something else, and something else...ect. Tommorow will be better... you'll see.

Jamie

[Hebbie]

Joyce,

I am so sorry that you have had such a lousy series of events. As if the news of your tumor growth wasn't enough, you had to have an insensitive nurse to contend with....

Your doctor sounds like quite the pessimist. I would THINK that a doctor specializing in lung cancer would suggest Taxol with the approach of "it only works 20% of the time, but in your case, I think it's worth a shot" or "when it works, it works" or something POSITIVE. After all -- this guy is supposed to be on your side!

Ray A. from the boards has the same oncologist that I do. I was thinking back to one of Ray's post when he told the oncologist "treat me as you would if I were your spouse".....and the doctor has done exactly that. He celebrates the good results with Ray and when things don't go exactly as they hoped or planned, he let's him know that they still have some tricks in the bag and not to give up. THAT is the kind of doctor you need and deserve!

If I am not mistaken, from what I have read on Iressa, the studies that are coming out show that it is working best in WOMEN, NON-SMOKERS, and NSCLC w/ BAC Features. You fit 2 of the 3 requirements -- I would think it would be worth a shot and you deserves more than a simple "no", you deserve an explanation as to why he is not open to it.

I would suggest searching Ray A's post and also searching Cary's post. Cary's father is Stage IV and has been doing quite well for the past year on some standard treatments, as well as some alternative treatments. His doctor's believe in treating his LC as a chronic illness (and one day soon I hope that will be the case for everyone here). Also check out Dave G's post. He has a WONDERFUL oncologist (Dr. Joan Schiller, I believe) who has led him to clinical trials and also believes in treating the disease as a chronic illness -- and he is as feisty as ever!

I can relate to your fears about your children -- during treatment, I would sit on my son's bed and cry each night, watching him sleep. But one day, instead of sitting on his bed crying, I felt a fierce determination rise up in me, telling me to FIGHT this thing with all I had.

We need to take each day at a time.....

Each morning that we wake up is another opportunity to hear about emerging clinical trials......

Each day that we make is through is another day closer to a cure.

Hope is not lost.

[Guest Phyllis]

You really can't take what that horrible oncologist said. My doctor yesterday had to switch me to gemzar since the carbo/taxol had stopped working. I wanted navelbine also, but he said they both only have maybe a 5-10% chance of working. I asked him about GVAX. He said not a big believer. *#*#. The other oncologist in MS was like you have lots of options. We'll try this chemo that chemo, etc. but of course would not support the radiofrequency ablation, but of course they don't have any other great ideas either. Sorry for my rant. You really can't take this stuff to heart. The nurses ended up calming me down saying the CT scan really wasn't that bad and how about a nerve pill to go with this. I should have died many times but I am still here. Taxol is a good drug. You do need another doc. I am also about to go on medicaid.

[Elaine]

Joyce,

I dont know why people say the things they say or do the things they do that hurt people who are already hurting. My guess is that they have built a shield of protection around themselves because of the suffering they see and haven't been able to alleviate in the past, so they lump all those patients together in their mind. As others have said, you are you and not a statistic.

As for Iressa and Medicaid, I think I remember reading that Iressa can be covered under medicaid as a third line treatment.

Love and fortitude to you

Elaine

[JoyceH]

Hi again-

I just wanted to say thank you for all the wonderful responses. I love all the different opinions from everyone. Very helpful! I will take everybody's advice. I'm looking into finding a new oncologist right now.

You all are great!!!