It's not cureable but it is manageable

[jaminkw]

Didn't have the courage to ask the hard question outright but I guess between my husband and I, we got close enough that the doctor gave it straight. Believe it or not, we three were sitting there in a fairly small circle and I never heard her say it. My husband told me later. I should be grateful for the "manageable" but can't find the positive yet. Crying off and on for a couple of days. Told my son and daughter and sisters but don't want to talk to friends yet. Hope I can get back on top of it all tomorrow.

[Ry]

I know how the beginning of this feels-- like you've been kicked in the gut. I looked at the notes I took after our first appointment and didn't remember half of what had been said. Try to think of it as a chronic illness like diabetes that he can live with given the right treatment. Hopefully he can manage this disease for many years to come.

Rochelle

[RandyW]

The research goals currently are to get Lung cancer to a "Chronic" stage. You do not die from it, you LIVE with it. That is where maintenance drugs like Tarceva come into play. Stay alive until the "Cure" is found. chronic being like Ry said Diabetes and other such diseases. THere is lots of positive research going on now. Don't lose hope never lose hope!! Its the one thing we have going for us. Sayin Prayers tonite for you and the family..

[dadstimeon]

Was told the same thing and I'm still here. Lung Cancer is not a death sentence and one can live for many many years with it and still have a life. Take it one step and one day at a time. Lots to take in at first for sure. Talk to your friends when your ready. Might want to join a support group with people who have been there done that or a phone buddy. Not saying it is easy or fun but it is doable. Prayers for the best. Rich

[jaminkw]

Thank Ry, Randy and Rich. I've been busy feeling the feelings--yeh, the kick in the gut--but I'm on top of it again. I started last night with my post here. Your responses were really comforting this morning. I followed up with a call to my massage therapist who has offered free massages through my chemos, made an appointment and had another good cry with her. Later I was feeling up to calling a good friend who lives miles away but who is coming to visit in March. We made plans. Asked my daughter to call the hospital and confirm I heard correctly (because my husband wasn't sure he heard the same and I wasn't up to making the call) that I'll have two more three-chemo cocktails, then another CT/PET. If I'm still stable, I'll go on Avastin maintenance. I'm trying to take one day at a time and not fret over how long I'll be doing maintenance every three weeks. My husband and I are traveling between Key West and Orlando for the treatments and it's getting wearing after five or six trips! I'm focusing on Ned's "signature" that says his Avastin only infusions were a cake walk. I know I could use a real live support group but I'm a retired mental health therapist. My massage therapist, who has known me for years, agrees if I join the one here, I'll wind up being the therapist taking care of everyone else. I'll stick with the online group but will consider a phone buddy.

Thanks all who responded for being there.

Much appreciation, Judy

[RandyW]

I know that drive its a LONG ONE Have you though about maybe havinga satellite treatment in Miami perhaps?? Would be closer i know for a fact!! Hugs and Prayers always. I usede to live in West Palm across from Lantana airport and went to Culinary at Florida Culinary in West Palm Beach right on I-95 at 45th street!!!

[jaminkw]

Randy, I'm sticking with MDACC for now and may be locked in (in a good way!) by acceptance in a drug replacement program for Avastin. They said I was accepted but needed to send in some documentation. Haven't heard since then but rep is also working on replacement of some other drugs and hospital is saying they want to help with other medical bills. We got caught uninsured and it's a nightmare. The travel will be worth it if we get even some financial relief from what looks like disaster!

[RandyW]

in a strange way that is Good News then!! Glkad things are working out in their own strange way!!

[Welthy]

Jamin,

In time, you will come to appreciate your Doctor's honesty. We were told right from the beginning that my husband's stage IV was incurable, but treatable. Once the shock wears off, you know the fight you have on your hands in a realistic, yet hopeful way.

I don't see enough in your profile to understand exactly what you are dealing with. The variables for survival are many -- type of cancer (adeno, squamous, BAC - which is often very slow growing), cell differentiation, response to chemo/radiation, etc. My husband pretty much had the worst case scenario, but his cancer loved his lungs and he only had two bone mets during his journey. This helped give him two and one half years of "gravy time" in our book! Both of his lungs initially were how you described yours.

I'm sorry that you have to travel so far, but if it is in the clinical trial setting, it's probably necessary.

May I also suggest that you ask your Doctor about receiving massage therapy. My SIL is a CMT and would not do any massage on my husband, due to his cancer, but did do Reiki treatments. I can't remember the reason (no brain anymore), but there was a reason that massage was not recommended.

My very best to you on successful response to your chemo!

Welthy

[Patti B]

Jamin-

Glad to hear you are feeling better. Never, never, never give up!! Attitude is half the battle, no matter what doctors say!! If my doc had been correct with my timeline, I would not be typing this right now. Everyone is different and you will see that so many of us here have hung around a long time.

Ned is right - I was on Avastin only for 7 months and it was a definite cake walk except for the high blood pressure I developed from it. But no problem -a pill a day keeps the high BP away. Other than that, there are no side effects.

I agree with Welthy - I also read something somewhere (maybe on onctalk) about being careful with massages but I honestly can't remember why. Check with your doc on that one. In the meantime, I will check out the archives on onctalk for you to see if thats where I saw it at.

Hope you continue to do well - keep us posted.

Hugs to you - Patti B

[jaminkw]

Thanks guys. I will check out the massage issue. I just can't imagine it being bad and have had one already since doing chemo with no ill effects but it's worth checking out. This is twice on the site that I've heard high blood pressure associated with Avastin. It's just a matter of a pill if you get the right one. Even before my Dx my 80 mg Diovan had to be doubled. Now I'm barely controlling it with 240mg. If it's the Avastin, I guess I'd better get to work on the right pressure pill before I go on Avastin maintenance.

My promise to myself as soon as I get through the next couple of weeks is to fill in the diagnosis and course of my treatment to be repeated with my posts. It's helpful sometimes to read others. Long story short--hospitalized in September with a pleural effusion and pneumonia and had two liters of fluid drained from my lung; they found cancer cells--adenocarcinoma to be exact in the fluid; x-rays showed fluid gone; CTs no tumor; CT/PET no tumor but nodules and activity in the chest wall described as associated with "low level malignancy." Diagnosis was still IIIB Lung Cancer because once you've thrown an effusion that's where you are staged. After four infusions (Taxol/Carboplatin/Avastin) at three-week intervals, I'm stable but I was stable according to xray and CT before chemo. For the most part, I feel pretty good and have a hard time accepting the Advanced NSCLC diagnosis. The only times I feel bad is pretty much after chemo. Go figure!