I NEED your opinion!!

[Justakid]

OK, here we go.......I need everyone's opinion. I know that the decision is mine but need as much help/information I can get.

Some of you know me, some don't. Had lower lobe of left lung removed, 17 lymph nodes removed, 3 lymphs had cancer cells in them, one of those was in the center of my chest. I had 6 weeks of radiation and taxol/carbo chemo. Waited 3 weeks and am starting 4 full strength chemo.

That said.......My body has not handled any of the treatment well, I know this is no picnic but the side effects and pain that have been involved with treatment is more then can be handled. The Dr's have no answers as to why I am reacting this way.

Anyway, my questions is should I stop the treatment, haven't I had enough to fight this? I know there is no right answer and like I said it's up to me. BUT.......the pain is getting unbareable, when do you say enough is enough. When do you say try one more treatment. I can honestly say that I have given 200% to this treatment. I have read everyone's bios and it doesn't seem like too many others have had the additional chemo that I just started.

I am looking for SERIOUS suggestions, not sarcasm or just a "give up" attitude. There are a lot of knowledgable people here and I need your help so I can see both sides. Thanks!

[Donna G]

If you made it through the surgery and radiation that is great. You are very young. If the doctor recommends chemo, I think you should go for it. You may tolerate the chemo just fine. Many people go through it without any major problems. After all 10 or 20 yrs from now this will be ancient history. Donna G

[Tami]

Beth,

I can't tell you to hang in there or just give up as that's your decision. but I can tell you that many of us are or have been in the same situation myself included. So I guess you'd say this is my advice. I went through the "SCANS" that led to diagnosis, then a thorcotomy to biopsy the tumor (mine was under my heart so it was tough to reach) came home from the hospital and began 8 weeks of chemo. Went through the chemo, then another thorocotomy to remove the tumor and nodes, couldn't get it and was staged IV inoperable. Then more chemo for 8 weeks, then scans nothing changed. Then started on additional 8 weeks chemo along with radiation. Rads everyday for 12 weeks. Then after that I was sent to a Cancer Center (finally, da-n HMO!) and had a pneumonectomy. I had a total of 3 chest surgeries during those months, along with the chemos and radiation. I also worked full time and as a single mom took care of 3 small kids. I went back to work about 12 days after my pneumonectomy. Yes, it hurt and I was and still am in pain. But I just kept going. I kept thinking that I'm young (late 30's at the time) and I can do this... things will get better! Things will get better! And they did. Are they great, no, but they are better. The pain that remains is something that I can live with and I want to live and see my kids grow. Things are tough right now for you going through treatment but you can do it. You are young and most likely were in pretty good health till diagnosis--right? then the surgery made you feel horrible, then radiation... it's like why should I volunteer to feel even more miserable?! But I believe you can get through the pain. My advice is take the chemo. I know it's tough but it may not be as bad as you think. If the doc is recommending it, take it. so many others aren't given the option and sometimes things come back so I would give this nasty monster everything I could throw at it. You can do it, take each day at a time and you'll get through it. Like Donna said in 10-20 yrs it will be a distant memory.

[Frank Lamb]

Beth, I know it's easy to say but hard to do,however I am in the go for it group.Try sticking with the treatments.I was having a hard time w/chemo and rad combined but finally got thru it,& I truly feel it has been worth what I went thru.

[TAnn]

Beth,

You have really been through the ringer and more. I know you think you can't possibly handle any more. You are tired, worn out, discouraged and wondering if it is all worth it. YES! YOU are worth it. You were in the lucky small percentile that was able to have surgery and a chance at a cure. Hit it with all you can get and don't let even (1) small microbe of a cancer cell hang around anywhere in your body.

I agree with the others that say if the doctors recommend chemo, then give it another try. Maybe you would be a candidate for Iressa??? Have you spoken with your doctors about that option? Doesn't hurt to ask, and for me the side effects have been minimal.

Let us know what you ultimately decide, as only you can. But we are with you to help get you through it.

TAnn

[MJ]

hi beth,

i'm sorry to hear about all the side effects. i agree with the others in that if the docs recommend chemo that you should heed to their advice. it will be better in the long run. but if the chemo combo is giving you so much trouble, you may want to talk to your docs about switching the drugs used. perhaps they would be more tolerable. tann recommended iressa, and i also think that it's worth mentioning to your onco. also, what kind of side effects are you having? are they the "common" ones or much more severe? i'm asking because perhaps we on this website could offer you advice on how to better deal with them. i hope that you are feeling better really soon.

God bless,

mj

[Fay A.]

Just guessing here, but.......

You are young, and in otherwise good health. Your physicians may be slamming you with the heavy guns because they are trying to completely irradicate the cancer from your body. I can honestly say that I begged my docs to do this for me, and they refused. I can honestly say that I believe with all my heart and mind and soul that had they done what I asked in the very beginning I would not be dealing with the type of recurrence I have now.

I know how tough this is. I know it hurts. I know you're sick. It's just plain awful. And if my docs had offered this to me I would have grabbed the chance with both hands. Because there are those out there, young and in otherwise good health, who have taken the kinds of hits you are taking, and come out the other side in full remission.

I would give a great deal to be one of them.

So you need to decide if the life you are trying to save (yours) is worth the fight you will have to put up to do so. You have to make that decision. It sounds as if your docs think you can do this. Do you believe you can do this? Is the fight worth the chance to be a long term survivor?

I believe you can do this.

[Justakid]

MJ -

Side Effects -

full body pain. from my hair to my toes. can't touch my scalp without pain. muscle, bone, joint pain from head to toe. pain is constant then I have stabbing pains on top of it. I have had this since Thursday. finally could no longer take it and went to the ER on Sunday. it took 3 percocet, iv demerol and iv ativan to get some relief.

That is my main complaint. I can handle the nausea, dizziness, throat yeast infection, minor joint pain, finger nails are tender.

The Dr has no explanation for it and is changing my chemo drugs. Also saw another Dr today about all the pain and I now have more pain meds to take for the nerve pain.

I might contact the makers of Taxotere and ask them about all my side effects, maybe they can shed some light on it. It's worth a shot.

[kimblanchard]

I am so sorry for what you are going through. I would say try the new treatment, it might be much less demanding on you. You can always top later but at least try it first. Take as much pain med as necessary.

My husband was soooo sick for soooo long, I took care of everything for a couple of months, he was barely awake. He got through it and he is really doing well right now on Taxotere.

God bless you.

Margaret

[Fay A.]

Beth,

I've known some who had Taxotere who had pain so bad in their bones it felt like the bones were breaking. (I am one of them.) I had horrific muscle and tendon cramps. Kind of like a charlie horse from the back of my head down my entire body. I was given a prescription for Oxycodone, and it helped with the kind of pain you describe. I'm kind of a drug lightweight...so I never had to take large amounts of the drugs. And it didn't leave me in a 'drugged' state, either. It just knocked the pain back to a tolerable level.

[-Cheryl-]

Beth,

You are almost there. Don't give up. You can do this, Life is to precious. I wish I were there to cheer you on. Unfortunately, only you can take the slams. You have been through the worst already. Don't give up please! You can and you will make it through this! Do you have anyone to help you?

Cheryl

[Hebbie]

Beth,

I think my opinion is going to differ from those above, but keep in mind that my opinion is just based on MY experience.

You and I both had our lobectomy's FIRST, then followed up with radiation and chemo at the same time. I know you said you handled it pretty well. I wish I could say the same -- by the time I was done with my 6 weeks of daily radiation and weekly Taxotere/Carbo, I couldn't stand up without dizzy spells, needed IV fluids every other day and lost so much weight I was weak and shaky. The doctors had actually planned on giving me a 7th dose of Taxotere/Carbo the week after radiation had ended, "just for one last whammy" but decided that I had taken a big enough beating. There was just no way my body could have tolerated any more at that point and additional chemo was never suggested by the docs again.

HOWEVER, you said that you handled everything very well, up till this full dose Taxotere. Have you asked your doctors the reason behind the additional full-force chemo? They just want to make certain they are doing all they can?

Ask them how your blood counts are -- are your cells holding up ok?

They do all those pre-chemo blood test for a reason -- to make sure you are up to the task at hand! I guess if they didn't feel you could cut it, they would stop.

I think it was Fay who suggested a painkiller? That might be helpful -- I took Oxycodeine during the last two weeks of radiation/chemo because the chest/throat pain was just too intense. Don't suffer through the pain without seeking some alternatives!!! And don't throw in the towel without ALL the answers!

I know this is a difficult decision for you, keep us posted as to the outcome!

[Snowflake]

Beth,

I am sending a PM. If you choose to share, it's up to you.

Becky

[stand4hope]

Beth, I would never feel comfortable to give you advice on this. You and the people who have had to go through these body-smashing, body-beating treatments can tell you what it's really like. I can only tell you of our own experience. My husband went through 3-4 mos. of hell, and the treatments took a powerfully strong and healthy man and knocked him completely off his feet. Because of his good health, they hit hit him hard and fast, but it was so bad that I thought the treatments were going to kill him instead of the cancer. Now, before you or anyone takes that as negative, the good news is that he's glad he did it, and I am THRILLED he did it. You've seen my posts on how well he is doing today, and you can read his profile to see where he is today, so I'm not going to repeat any of it.

I do know that no matter what you decide, everyone on this board will support you in your decision. There are people who have elected to not have treatment, and some post here regularly. They are loved and respected for their decision because it's a decision that they have not made lightly, and their decisions are what is best for them.

Just remember, Beth, we are always on your side.

Love,

Peggy

[lisaRN]

Hi Beth,

My husband has not tolerated any of the chemo or radiation treatments well and it has been so difficult each time the docs suggest a new tx... he will ask me " what do you think?" and i tell him what i think i would do if it were me or what i think he should consider given his particular situation...

regarding what you said about others not getting the extra doses of chemo, i am not sure about why that is for everyone but for Ahmed, it was two fold, #1- the first two doses didn't work and # 2 he tolerated poorly...

I have seen him going through what you are describing re: the pain and fatigue....

While you have to take into consideration how you feel and listen to what your body is telling you, you also have to take into consideration the question of why the docs want to give you more of the same....is it b/c you initial doses worked and they just want to back that up for "good measure"?

when we were at Dana Farber questioning why the medical onc we had initially was stopping chemo.... Dana Farber told us that they would NEVER stop after 2 doses....that they would always back up a successful round of chemo w/ at least 2 additional doses...

that said, you do have to go back to how you tolerated it.... for my husband, i am constantly telling him to hang in there.... maybe for selfish reasons... i remind him that he has a lot to fight for especially our 14 yo and me....like i said that is selfish thinking, and it is very easy to think like that when you are not the one taking the chemo..

you have to remember that these choices are YOURS ALONE....

you WILL make the BEST decision for YOU....

prayers and good thoughts.....

Lisa

[Fay A.]

Heather,

Thanks for writing what you wrote. I didn't realize that the chemo and rads were at the same time, and everything I have ever read has said that combination chemo and rads simultaneously is much harder than just chemo or just radiation.

I base my writings on my personal experiences...those of me fighting like you wouldn't believe to try to get someone to do other than just the surgery, and dealing with one recurrence after another when no action was taken on a timely basis. I know in my heart that that had things been done differently I would not be facing what I am facing today. Maybe someday in the future I would be facing it...but not today. And I don't want anyone, especially not a young Mother like you or Beth, to have to second guess what might have been if only they had been more aggressive in the early days.

So, Beth, my apologies if I came across too harsh.

[Justakid]

Boy what a mess. Saw my Doctor today and got another pain pill to handle things. The pain pill knocked me out, I couldn't walk or think.

I was waiting for the side effects of the pain killer to wear off and just took my temperature for the heck of it and its 101.6.

Will this ever end! It's just one thing after another!

I appreciate your help, got some thinking to do and Dr talking to do!

[kimblanchard]

Wow, sorry you are having such a tough time. Chemo plus radiation at the same time is REALLy tough so you are through the worst of it. Your doctor is recommending full dose Taxotere based on a recent study that showed that patients who had chemo/rads followed by 4 rounds of full dose Taxotere not only lived significantly longer but had a better chance at cure. He is giving you sound medical advice. Iressa has been mentioned but there is NO evidence that Iressa in your setting will improve you chance at cure. There is a clinical trial looking at that question now but I wouldn't consider it an adequate substitute.

Maybe you just need a little more time to recover before starting the chemo?

Joe