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I feel lost and hopeless


Carleen

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I am so confused, I am in shock and feeling like my life is spinning out of control.

Yesterday Keith and I got the results from his current CT scan. The doctor said that the scan showed no change. I thought stable disease was ok, not bad. But the doctor seems to think it is bad. I don't understand what is happening and why. Maybe one of my friends here can explain it to me better.

The oncologist told us that chemo works best in the initial doses. Because Keith had a decrease from the last scan, it showed that he had a response to it, and now that there is no change it means he has plateaued. He says there is not proof that additional chemo will have any benefit, and that Keith will just get added toxicity and side effects. Therefore, he has decided that we are stopping treatment. From what I can gather, he thinks it's a better idea to just sit around and do nothing and wait for the cancer to grow and spread and then reevaluate chemo in 3-6 months. To me that is completely unacceptable. This is the love of my life. This is my reason for being. The only reason I get out of bed each and every day, draw breathe in and out, is so that I can be with him. How can this doctor give up, and say that there is no hope. I need hope. Keith needs hope.

When we tried to question various things, his response was that his treatment is not curative, and that he feels Keith's cancer will never go into remission and that he's gotten the best response we can expect.

I brought up the subject of clinical trials and Octreotide therapy. He said well, if we want to think about experimental drugs he can check into that. What does he mean "if we want to think about experimental drugs" Shouldn't HE be thinking about anything and everything that might help Keith instead of just throwing in the towel and waiting to die.

I asked the doctor to arrange an Octreotide scan to see if Keith even qualifies for an experimental treatment being done in Rotterdam. The doctor doesn't know if Keith's type of cancer is in the range of the experiment, and we will need to see if his scan shows he even has the hormone receptor sites necessary to benefit from the treatment. But its my hope. I also don't know how we will get there, how we will afford this, but if I have to sell my kidneys on the black market, I will do it.

I just feel so cold and frightened. I feel like I am back at square one, to the day of initial diagnosis where all I could do is cry all day and night but it is worse. The worst part for me is how Keith is feeling. From the day Keith was diagnosed, he took this on with a fighting spirit and a positive attitude saying he was going to fight this and win. This was a speed bump on the road of his life. But last night he cried. Last night he talked about the doctor telling him he was going to die. Last night he lost all his hope and is now wandering through the days frightened and angry. I see the look in his eyes and it tears me apart. It is like a million razor blades shredding my heart and scarring my soul. I don't know what to do or say anymore. Nothing I do can make him feel better, it isn't good enough. I can not live without him.

Today is my birthday, and instead of having a good day together, we are miserable. I wish I would just die, but I know Keith needs me now. My one birthday wish is for God to let us trade. I wish he'd let Keith be healed and give the cancer to me. I know that isn't what Keith would wish, because he is so good and giving. He tells me he is grateful that if one of us had to be ill it is him, but I can't stop feeling what I wish. I can't bear the thought of possibly being without him. How does anyone who loses their best friend, lover, soulmate, and only happiness go on from there? Someone please tell me what I am suppose to do. I am lost adrift in a sea of agony and fear. The world is darkness and pain.

I have lost my hope. Someone please help me find it again.

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I dont understand why this doc hastnt mentioned Irrissa. I told my doc right from the beginning, You treat me as if i was your wife or kid. I told him when he wants to give up let me know and I will go someware else.

We have discused what happens after chemo is all done and there is still cancer there? He told me we would take a break from chemo for a while and then start taking Irrissa. I said, to me I rrissa is a last resort and he told me that wasnt true and they still havent found the proper use for useing Irrissa yet.

my prayers are with you :!::!:

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I'll second what Ray says. Bring on the Iressa!! Just last night while attending a symposium on lung cancer, a doctor came to speak to us about the fact that he was all but dead from the disease (he had sclc and was treated with everything and then some) and was put on Iressa. That was almost 2 years ago and he has not looked back since. He had a pill in his pocket, took it out, and said this little daily pill I take has given me back my life.

Hang in there Carleen...there IS HOPE...u just need to kick some *ss over there!!

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Hello Carleen,

I’m very sorry for you guys and my heart goes out to both of you. I have had cat scans that showed that the cancer was stable. That is good news. That the cancer is not growing. There are also other chemo drugs to try. I was on gemzar/carboplatin form Dec 2002 to March 2002. The nodules (tumors) grew. Was not effective. I switch to Taxol In June 2003 and I’m still on it. My last cat scan in late Aug 2003 showed some modules wet away, some nodule grew smaller, and I grew some new nodules. The Taxol is more effective. You are the ones who have the right to choose your treatment. It’s up to the doctor to advise you and go with your wishes in battling this terrible disease. Be firmer. If he does not want to go forward get another doctor. We have to be in control of our destiny. Also have you two joined a support group? I believe that only people who have or had this really understand and they can offer a lot of support and information. Try to hang in there and support each other. We all know this is a very difficult time for the both of you. Take one day at a time, take one step at a time. Hope this helps. Take care and God Bless.

Rich

PS: Please do not give up. God is on your side.

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Well, what about going back to the Mayo clinc and seeing what they say? Maybe they have a trial idea or another treatment to try.

You have to find a doctor that will be aggressive. Keith is young and I can't see a doctor not trying harder. Can't be that expensive to get to Rotterdam. I am sure one of the groups that fly cancer patients on their corporate jets can at least get you to major city in Europe not far from Rotterdam.

Take heart Carleen, all is not lost just your doctor's mind. :roll:

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Carleen,

I've been through 3 major and 1 small cancer centers, 2 Thoracic Surgeons, 4 Medical Oncologists, 1 Radiation Oncologist, 2 Primary Care Managers, 4 PET Scan Centers, 4 CT scan facilities.....

And I will do whatever is necessary, go where ever I must to find someone who will help me to live.

Yes....I think it should be the Oncologists who think about clinical trials for us (even before the standard things stop working. But the fact is most of them do not. And if they do, they don't usually look at anything not being conducted at their hospital or practice.

You will have to do the research on what's available, what needs to be done to prepare, etc.... It's difficult and time consuming and a real pain in the tush. But it has to be done.

You are not being disloyal by seeking care away from your Husband's present Oncolgoist. You are being a wise consumer of medical services. The idea is to help Keith into long term survival status, find a cure, attain remission.

And the Doc who acts like stability isn't good news doesn't appreciate that progression is the real problem.

I'm with Ry....I wonder where he put his mind....probably lost it along with what compassion he may have ever possessed, if any.

Don't give up hope...Either of you

Much affection,

Fay A.

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Carleen,

I agree with what's already been said. When your doctor stops fighting for you, find another doctor. Find a 3D support group, it really helps, one that includes caregivers and real discussion, not just invited lecturers. Call NIH/NCI and shake that bush, see what comes out. They have some phenomenal doctors there, and clinical trials funded all over the country.

I realize now how fortunate I was/am to have the physicians I do have. They have always had an optimistic outlook. If one thing didn't work, they had a next thing in mind, like chess, always thinking a step ahead. I remember seeing a woman in the oncologist's office, who had been with that doctor 11 years. When one thing quit working, they tried something else, and sometimes remission/stasis was good for a year or two, sometimes much less, but they were always looking to buy the time until the next treatments came thru or into clinical trials. Eleven years!!

I know how Keith must feel, I would not wish my loved ones to have to see this or endure this. It's much easier to have the cancer myself. I was no longer married, but I know it would about kill me to see my folks or my kids with this nasty disease. I can't imagine how you must feel, but, kiddo, keep your chin up. You gotta do what you gotta do. Be strong. When all else fails take hot bubble baths and naps. I took a lot of naps.

I also wept in the tub for many an hour, but I got out eventually, and got on with it.

Honey, you and Keith are in my prayers. Find a doctor who will fight to help you fight.... they are out there. and please try to call NCI and see if they can help.

At that time in my life, I also found great solace in my faith. If you have a strong belief in something, now is the time to take it out and dust it off.

Remember, miracles happen every day.

Count the small blessings... and remain guardedly optimistic.

Long distance hugs,

MaryAnn

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I agree with everyone else. GET A SECOND OPINION!!! There are other things out there. Don't ever give up hope - never. The end of your jouney may not be what you wish for, mine wasn't, but until you are there (and that may be when you and Keith are 80) you have to believe it can be done and you have to try every avenue available. I knew I had to be at the end of Hugh's journey knowing we had done everything we could. I feel we did and that helps me get through each day.

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Oh, Carleen, I am so sorry that you and Keith are going through this. This roller coaster ride truly is such a @%*&!!!

I agree with everyone that if you are not getting the appropriate attitude from your oncologist, you need to find a new one. The doctors attitude towards this disease can make all the difference in the world!

As far as clinical trials, here is a link to many SCLC trials going on right now. Unfortunately, we do have to be advocates in our own health sometimes and as someone said, many docs don't offer trials that their own hospital isn't participating in. I am currently researching a trial in Kentucky and sent the information to my doctor for his opinion. It's our bodies and our health so we have to be in charge!

http://www.clinicaltrials.gov/ct/search ... mit=Search

Please hang in there and don't give up hope!! I think of you both often and will say a prayer every day for his continued improvement!

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GO GET ANOTHER ONCOLOGIST!!!!!!!!! Like has been said before, this guy sounds like he has given up on the 2 of you, that is unnaceptable!!!!!! Keep the positive atitude and always fight, never give up. Never let a Doctor tell you to give up. I sure wish you were having a better birthday Carleen, I spoiled our 10 year anniversary with my diagnosis. Please keep your head up and let us know how it is going. My prayers are with you and your husband.

David C

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Carleen,

I am so very sorry that you and Keith have to go through this. Life seems so unfair at times. I wish I could make it better for you. But I think for starters you two need to get another oncologist!!!!!! I can't believe his passive attitude, how awful! There is hope and don't give up on that. It seems so very overwhelming when we as the caregivers have to take on the doctors responsibilities of handling our loved ones care. But it is something we must do. I continue to keep you both in my prayers. Happy Birthday and I hope you can have a real celebration soon. Big hugs to you.

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Carleen

It is time to switch oncologists. I was at Yale University for the first part of my treatment and in July when there was no change on my scans i asked the oncologist who was in charge of my case "okay, now what" his response we just wait. I asked wait for what, wait until it grows back? He told me that this was a war and not a battle, I might win some of the battles but I would not win the war. I told him thank you very much, got copies of all my records, all my scans and x-rays and went to a new oncologist who immediately started me on a new chemo regimen. Since I have started on it, (I have had three full treatments) I had one scan which showed no change, she was not discouraged at all, my tumor markers are down so that means it is working and I feel so much better and its not wishful thinking. I have much more energy, I am like my old self, a bit hyper, but thank God I feel good. DO NOT GIVE UP, call some other oncologists now, see a couple of them and find out their opinions. There is still a lot of hope for Keith. He has his youth going for him too. I love the new oncologist I switched to, she has had patients with cancer on treatments on and off for 12 years! And they are leading good lives. Please make some appointments for Keith and don't let him give up. I will be praying for you.

Bess B

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Carleen,

I can only repeat what others have said. GET ANOTHER ONCOLOGIST!!!

Keith is way to young not to fight back. As you can see by the description under my signature, Bill has been trying everything for months with NO SUCCESS YET. But we do not give up. And when one oncologist told us to just go home and make Bill comfortable I told him that was not an option and Bill agreed. We found a research nurse to help us find options and she was aggressive enough to challenge the doctors.

Honey, hang in there. This battle can be won!

Blessings to the beautiful young couple,

Peg

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Carleen,

Reading your post brought tears to my eyes. I am so touched by the love you have for Keith that you would gladly take on this dreaded disease and all of the suffering that comes along with it.

I am sorry that you are discouraged by your onc. Stable is good news, despite what he said. There are aggressive oncs and surgeons out there. I hope you find one.

Carleen, I will find a telephone number for you tomorrow when I go to work for Angel Flights. It is a group of pilots that will fly sick patients anywhere in the world for treatment. Please keep posting, we are your family and here for you both.

cheryl

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Oh Carleen,

I'm so very sorry you and Keith are going through this. Please, please, please, get another opinion. Don't give up cause of one lousy doctor, Keith is young, you need a doctor who will try the latist on him.

I'm just at a loss for words, but know I will be praying real hard for you two.

God bless and hang in there

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

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Carleen

No progression is good news. Now is the time for and 2nd and 3rd opinion and looking for clinical trials. I have have had three different scans in two weeks all which showed no change. To me that is good news. But it is time for me also to get a second opinion. Now is not the time for you or Keith to give. He is not a goner he's still in the middle of his fight. Drop this onc like a hot potatoe!

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Carleen,

A few weeks ago I was ready to throw in the towel on my Buddy. The Onc had me believing his body was full of cancer. Well, if you read my latest postings, you know how wrong he was. That can be how wrong Keith's onc is. Sounds like Keith's onc is just like the radiologist were with Buddy's scans. They saw he had had lung cancer and so naturally assumed what they were seeing on the scans were probably mets and the onc went with their reports. He to only looked at the present and not the past history of my Buddy.

How is Keith actually feeling right now. Does he have any energy, is he eating, does he still want to fight. If yes to any of the above, kick that onc in the butt and find another. Is there a special dr you like and feel confident with, ask that dr for advise on who to go to. That is what I did yesterday. I took Buddy to his lung specialist who is a very caring Dr and she asked us if we wanted another Onc. she said she had one she really felt was good at what he did.

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Carleen

All I can do is repeat what the others have said. Don't give up! Find another oncologist. My pulmonologist is the one I always fall back on for support and advise. He is honest but also my UPPER when I need one. Surely Mayo has someone that would/could help.

We will keep you and Kieth in our prayers.don't waste time switching doctors. BLT

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*HUGS*

Carleen,

First of all, I am sooo sorry you and Keith are going through this. It is evil, but I agree with all the posts, GET ANOTHER opinion! Please do whatever you can to help Keith get the best treatment he can!

As for feeling like you wish you could just die, I know how you feel, I feel that with my mom, and find myself making deals, with God if he could just switch it to me, but you know, Keith would be so sad if that happened, but I think it is okay to cry, let it out, and then re-group, and make a plan!!

My heart goes out to you!!!!!

*hugs*

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Carleen, I must start by saying that I could not write down the names that come to mind when I think of that sorry excuse for a doctor...they are too offensive, and I would probably be booted off the site (and we cant have that, can we?)

Now, I am going to tell you and you tell Keith this from me , please "Other than a cure for my dad, my second wish is for him to have STABLE DISEASE!!! Stable=no spread=GOOD NEWS!!!

I would tell that doctor that you hope that, should he ever be in Keiths position, you hope that he has someone fighting FOR him-someone that will pull out all the stops-someone that will not let him "go gently into the night"- because if his doctor is as pathetic as him, he will need a fighter in his corner-or he is doomed.

Now, you are Keiths champion-as he has been yours, I am certain. Keith must not allow this doctors "the glass is half empty" pessimistic attitude become his own...it is self defeating. Keith has been doing great!!! You BOTH have. It is hard, I know, but anything worth doing-worth having-is a struggle...and life is one hell of a trophy, don't you think?

Proove this guy wrong, and in a year-or two-you and Keith can strut into his office (assuming he still has a practice) and kick his butt the same way you will kick this cancers butt.

Maybe the guy is tired, maybe he is burnt out...but he does his patients and their loved ones a great disservice by remaning in practice and not seeing that stable disease IS a good thing. And that some type of treatment plan must be implemented, to further Keiths progress, or keep him in good standing-as he is now.

Stable disease-man, right now that is my dream for my dad.

Carleen, you and Keith deserve a doctor that is willing and able to fight as hard and as long as you and Keith have fought since his diagnosis.

THERE IS NOT ONE MILITARY FORCE IN THE WORLD THAT CAN WIN A WAR BEING LED BY A GENERAL THAT SENDS THEM INTO BATTLE WITH EMPTY WEAPONS... NO RACE OR CHAMPIONSHIP GAME CAN BE WON WITH A COACH STANDING BEHIND THE TEAM YELLING "YOU CAN'T DO IT...ITS NO USE...GIVE UP"...AND NO DISEASE CAN BE FOUGHT-LET ALONE CONQUERED- WITH A DOCTOR THAT SAYS THAT HE IS NOT GIVING YOU THE MEDICINE THAT YOU NEED THAT WILL HELP YOU LIVE.

Carleen, you guys can do this...with the right help...with the right doctors.

Please let us know how it goes, we love you guys. Take care, Deb

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(((((((((((((((((DEAR SWEET CARLEEN))))))))))))))))))))))))))))))))

Our friends here have given you such great advice. I just asked my father's onc yesterday about second opinions. I want to have my father evaluated at Sloan Kettering here in NY. Even he told me to do it. He said if it were him, he would ask another opinion. I said "well what can they do for me at Sloan, that you cant do" He replied "I dont know what they might have up their sleeve". So this is what I pass on to you. Go somewhere else and see what they have "up their sleeves". There are no new mets, stable, that is good. I dont know where you live, but it sounds like you know of some other options.

Keep posting here, we all know what that numbness, spinning and cold, hard fear is like. We love you, dear friend.

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Carleen, i am so sorry for the despair you both have, but you should be strong especially at this moment and standing up for helping him get the best treatment or option for your love. I know this is very difficult to go through this dark valley but Be STRONG.

First, Iressa is for NSCLC, not for SCLC. Iressa is not an option.

Second, I have one question, how many rounds of chemo (no matter what regimen) did he finish? Could you please list the details out? Frankly speaking, what your oncologist said regarding even additional rounds of chemo (on top of more than 6 rounds) have no significant effect on SCLC patients right after first-line chemo treatment completed is correct. Additional rounds only cause many side effects and toxicity to the patients but no change/positive effect on the tumor size. If insisting on getting new chemo regimen, the quality of life will be affected. The longer the interval time between the first-line chemo treatment and the second-line chemo treatment, the better the response to the new second-line chemo treatment......In fact, what the oncologist said is the fact. He did not tell lie.

Actually, while you refer to SCLC board of what I posted under the subject of "CPT-11", JonathanS mentioned some other chemo regimen for SCLC. Maybe you could seek other advices from other oncologists. Seek more opinions from professional.

Carleen, you should hang in there. You have us.....

Try to seek others' help such as your friends & Keith's friends and family etc...don't take all responsibilities on your own....

Post more and we are all supporting you and definitely praying hard as well.

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