40 yrs old, nsclc stage IIIA, inoperable, need support

[kimblanchard]

I won't go into all the details of my dx since you can read about that at the bottom of this page...

I would like to express my gratitude to all that participate on this board, you share a lot of info, spirit, emotions, love and guidance.

The last message board I was a member of was for infertility back in 2000 while I was trying to get pregnant with my son...I wish I had that problem again!!!

As you can see I have navigated throught this beast of a disease and completed my freshman semester. Now I am expected to wait 3 months and do nothing? Gamble that what is left is just scar tissue? Or bet that it will shrink even more once the swelling from radiation and effects of chemo wear off? I'm not much of a gambler, and I don't have the best luck either.

So with that, What have you all done to get through a waiting period? Are there any "unconventional" natural treatmentsI might want to know about? How do you know which one to try? I will consider all,

I am open minded.

Its so strange that I feel so sad and scared now that I'm not doing chemo/rad...I feel like I'm not doing anything. Will go to Moffit Center next Thurs 10/06 and see the specialist up there. There may be a clinical trial. I want full remission!!! I will accept nothing less!!!!

[Kasey]

Welcome Vicky!

I have no remedy for the waiting game-unfortunately. DH and myself are in that mode right now. Many here....almost ALL here....go through exactly the same thing. We obsess, fret, cry, rant, and come here for support.

You have been through quite a treatment regime in a short period of time. I believe that is a good thing.

Hope you continue to come here for support and can find it along with some solace and comfort. We are all here for one another - no matter what it is we need.

Again...welcome.

Kasey

[Donna G]

Welcome Vicky. Is there a chance if that node was zapped that they might reconsider surgery?

So far you have been so busy going to doctors, treatments, etc now after all that it does seem like you are doing nothing but-------You are really building yourself up again so you'll be in good shape. Let's face it, with 2 little kids you really need to be in good shape! Please keep us posted. Donna G

[ma's kid]

I don't have any answers for your specific questions but wanted to welcome you and to let you know that we are here for you...I am kind of new around here but this board has helped me in so many ways.

Blessings to you and your family is beautiful

Love and light

Libby

[jang]

Vicky,

I don't have any answers for you either. We all go through the waiting anxiety. Just know that we are here to support you. I'm glad you found this site. It is full of wonderful, helpful, supportive people.

[Don Wood]

Hi, Vicky, and welcome! There is no real remedy for the anxiety of the waiting game, I think. You just get better at it with time. Remember that chemo and radiation continue to work for a while after the treatment stops. It is only natural to feel like something is being done during treatment to fight the beast, and then feel anxious when nothing is being done. Hang in there. Don

[Ry]

Welcome Vicky, I am glad you found us. The waiting is hard. If you read through the alternative forum you will find lots of information on supplements etc. Good luck.

Rochelle

[rvillella]

Vicky;

I really don't have any answers either. I am just a starting freshman but have had to wait on some of the treatments because of surgery with dirty margins. I have an extremely hard time of waiting and all the beautiful people here have helped me with my anxiety. I will pray that you are done with the rounds and can spend time with your children. Mine are all grown and out of the house and I have 6 grandkids which I don't get to see to much. But when I'm through with all these treatments, I will be seeing them more than they want.

Ralph

[Connie B]

Dear Vicki,

I'm sorry you had to find us, but I'm also glad you did.

Let me first say that 10 years ago at the age of 43 I was dx.d with Stage IIIA Adenocaricoma lung cancer. The key words here are: 10 years ago!

I agree with Donna G on the issue of surgery after treatments. Did they think that would be a option for you?

So, you don't like to wait do you? (((VICKI)))) Let me share with you that your treatments may be still working on you. I think that's the hardest time of all is when we all complete our treatments and we are told to go home and come back in 3 months. ARE THEY KIDDING?????

You will see from my profile that I had surgery and chemo and radiation also. I went into surgery a Stage IIIA and came out a IIIB Say WHAT?

Having to do with the lymph nodes of course. So, my surgeon removed them along with a few more just in case.

The waiting is the worst part of this journey. There isn't anything we can say that will make this waiting game better for you. BUT, we can offer our support and ear/eyes with an hope heart and you can vent and ask questions until your blue in the face.

Hang in there. It's very hard but it's doable and now you'll have to learn how to take baby steps all over again. It's like starting over. We're here for you.

Hugs,

Connie

[kimmek]

Hi and welcome. My mom was the same stage and dx as you. She has so far responded well. We go Monday for scans and yes its so very scary, the waiting. I am learning that is just part of life now, like the many other new things.

After mom finished her treatment I too felt there had to be more she/we could be doing. I think I drove her doctors crazy asking and bringing in articles and such. There are alot of alternative treatments out there,different diets,herbs,vitamins, all kinds of things. You can do a search on here and will get alot of info regarding that, as well as a forum just for alternative therapies. We ended up leaving well enough alone as Mom says. She was tired and worn out after the chemo and radiation and was happy with her results. I still today think we should be doing something anything to keep this monster away.

If you come across anything spectacular let me know and I will do the same, until then post away, and you will find answers to questions you didnt even know you had. Don't be afraid to ask anything, i can promise someone has been there, done that. This is the most awesome place.

God Bless

Kim

[Kaffie]

Well heck, I just deleted my own post.

All I can really add is a welcome and tell you to read and reread Connie's post.

Kathy

[Don M]

Hi Vicky, welcome to this site. As the song says, the waiting is the hardest part. I have heard of some people going on high dose celebrex in combination with iressa as a maintenance therapy.

You know, in terms of survival, there is no difference between stable disease and full remission, but I guess I would prefer full remission too.

I guess what I would do to while away the wait is to research and ask questions. Going to Moffit to inquire seems like a good use of time. I would wait and see what the situation is after the 3 moths, but I would be exploring all possible avenues during the wait, at least for something to do.

I see your recent scan shows good results and that is pretty cool. I hope you get some peace of mind . Enjoy your kids whie you wait. Everyone here likes little kids and babies. Maybe you have some nice stories about them.

Don M

[francesbean]

Hello and welcome

[Maryanne]

Hi Vicki,

I just want to welcome you here. You have the best support group.

The waiting is the hardest and unfortunately there is nothing we can do for that except pray and hope for good results. You can read up on there with Alternative medicines and research that. That may help your time go by more quickly.

This is important, LC is not a death sentence. There are so many here who have beaten the odds and continue to do so everyday. I am sure you read Connie's post. There are so many more like her.

Hang in there and know that we are here for you 24/7.

Maryanne

[Frank Lamb]

Hi Vicki,and welcome to our support family.You will find many knowing and caring people here.

The waiting game is a part of the new normal as a lc survivor.It never really gets any better but you kinda get used to it after a while.Seems you have had pretty good sucess with the chemo so far,and you have a great positive attitude which is important.

The radiation and chemo you have already recieved is cumulative (keeps building up in your body)and it continues to keep working even after treatment stops for quite a while.(I believe about 5 to 7 weeks in most cases tho everyone is different).

I had the same rad & chemo regimine as you 2 or 3 times now.In april 2003 they gave me 6 mos.at best and I'm still doing pretty well.

There is life after lung cancer no matter what the drs. say.

[Patkid]

Hi, Vicky,

Count on LCSC for lots of support and caring.

We will wait and watch with you.

Welcome

Pat and Brian

[hopeandstrength]

Welcome! My dad is the one with lung cancer, but I have found so much support here! My only 2 cents to share is that your great positive attitude will help you so much! I really believe that is what is helping to kick my dad's cancer!

Take care,

Cathy

[Dazy]

Wow... You have been thru alot in such a short time - probably still reeling from the shock of it all, I'd imagine. I just wanted to add my welcome, prayers, and good wishes to the others. The waiting is AWFUL - I always say I'm gonna need a lobotomy ~ not a lobectomy by the time this is all over

Personally, I'm with Don...research, research, and more research...it least it feels like you are doing something.

Good vibes for healing for you. BTW, You really do have a lovely family!

Stacey

[cindi o'h]

welcome Vicky

We are almost twins as far as our treatments and stage goes...!!!

For me, treatment started Dec. 02!!! Oh my gosh! Doesn't that seem like a long time ago????

I had concurrent with the same as you and 40 daily rad. tx. The only thing that looks different are the ethyol injections...that is a new one to me.

So, anyway, I got shrinkage too. Right now, and so far, there is no evidence of any cancer present! How about that? Does that give you hope or what?? I hope so.

With me though, I had lots of side effects from the treatment and some other health issues that climbed into the picture.

With you, I am hoping that you just keep getting your strength back.

The busier you are with your life, the better!

Take care; PM me any old time!

Cindi o'h

[Jyoung20]

Hey Vicki,

Some things that have helped me through this traumatic time in my life is having a positive attitude and putting alot of faith in GOD. This has helped me become mentally strong enough to win the war. Not to mention, the thought missing out on my two year old little boy growing up. This wasn't acceptable. So far every scan has showed progress so something is working. I have also tried some different herbal medicines and vitamins. I drink POM juice, multi vitamin, spirulina or chlorella. I am about to start taking AHCC which is a mushroom supplement. Whatever you decide to do, please talk to your onc. first because you don't want to take anything that would be counterproductive with your current treatment.

P.S. Another thing I do is have fun. I got a new car, I quit working work, I teach kids private music lessons(for free), I direct a middle school jazz band, I'm working on a lung cancer fundraiser for January. I am doing all of this because I WANT TO not because I am made too. I am truly learning to understand how to be happy and what GOD intended life to be like. Boy am I lucky!!! Some people never know.

Living Life,

Jamie

[kamataca]

Well, I would say to keep busy...but with a 6 and 4 year-old, I'm sure that you already do! My Mom rediscovered her knack for crocheting. I think that everyone we know has received a blanket from her. It keeps her busy and keeps her mind occupied when it starts to "wander" into the black.

Glad you found us...keep us posted!

, Kelly

[ellakc2]

Hey Vicky,

I had 111A also, and I two yrs. NED. Have you thought of a second opinion on surgery?

Mare

[Fay A.]

Vicky,

I understand how you feel. One of the things I strongly suggest is that you go elsewhere for a second opinion consult. You're in Florida, so some of the places you might consider are The University of Birmingham in Alabama, or Vanderbilt-Ingram Cancer Center in Nashville, Tennessee. Just because you are not considered operable by the docs in Florida does not mean that other, more experienced Thoracic Surgeons at other facilities won't consider you a surgical candidate.

I know that 40 radiation treatments is a lot, and it does take time for the full results to become apparent. I still had tumors when the last of radiation treatments were complete. Several months later my scans showed the tumors that had been zapped to be gone.

Hope that you continue to do well, Vicky.

[Hebbie]

Hi Vickie,

I remember very clearly what it felt like to finish treatment...and then be left alone for 3 months, feeling like a sitting duck! After being so closely monitored for so long, it's suddenly like "What? I'm supposed to monitor MYSELF??"

The only thing that personally made me feel better, was to focus on nutrition/diet and exercise. It gave me a sense of control when everything else seemed pretty out of control. I could control what fuel I fed my body, and I made sure I ate the best foods possible. I also made sure I got out in the sunshine everyday and took a long walk to exercise the lungs. Since that time, I have begun traveling down a Macrobiotic Diet path and still appreciate the feeling of control I get when I know I am doing everything in my power to keep the cancer at bay....they rest is up to the big man upstairs

You need to find what gives YOU a feeling of control. There is a great book out there called "Cancer -- 50 Essential Things To Do", written by Greg Anderson. I found it very helpful, he sort of shows you how to formulate a plan for moving through this journey. I would highly recommend it!

[Calintay]

Welcome second opionions are always a good thing