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Advice, Please?

annie5379
Posts: 9
Joined: Dec 2003

My 54 yr old husband was diagnosed with stage 3 non small cell lung cancer in December...exactly 3 days before we left on our Florida vacation. He was hospitalized in Fla with pnemonia for 4 days. He has since finished 33 radiation treatments, but the dr. said he is not a candidate for chemo. His immune system could not handle it, since he also has lung disease. He is on prednisone, and is experiencing alot of congestion. I just feel as though we should be doing something rather than just waiting 3 months for another ct scan. The prognosis was very poor....only 1 yr max, but I refuse to believe it. at the end of the radiation, the dr said that the cancer was inactive, which we thought was great news. When we met with the oncologist, he stated that it still was very serious. He really brought our hopes down. A recent bone scan was clear. He is only on Prednisone, and has a nebulizer. Any ideas as to what we should do next? Thanks for the help....

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garthur
Posts: 2
Joined: Mar 2004

Annie, I don't really have any advise, but I am in a similar quandry as you and your husband. I am also in Florida (panhandle town). I had surgery in Jan 04 to remove upper lobe, left lung which had a 4cm tumor. Biopsy showed one lymph node with 20% involvement, but negative margins. I had 34 radiation treatments, but completing that (23 Mar 04), my Oncologist does not present much of a follow on plan. I had to persuade him to prescribe a CT scan after end of treatments. My previous and only other was in Dec 03 when they found the tumor. I am making a decision of which other Oncologist I will see in the next few weeks. I believe there must be some tests that can check on distant metastes, etc. Your husband had a bone scan; assume the Oncologist ordered that? My Oncolosist response when I mentioned that was "do you have any pain in your bones?" If you have gotten any more info/direction, I am interested. Wish the best for you both.

Plymouthean's picture
Plymouthean
Posts: 264
Joined: Jan 2004

Hi,
I'm a stage IV, NSCLC survivor, 2 1/2 years out from surgery.
I would definitely get a second opinion on the situation. The oncologist won't be upset about that. Even if he/she were upset/insulted/etc., so what... this is your husband you're talking about.
As for prognosis... A close friend of mine was diagnosed with colorectal cancer, - was operated on, (colostomy) and given six months. There was nothing more that the surgeon could do for him. The cancer had spread to his liver. That was almost two years ago. He's now being treated at Dana Farber Cancer Institute in Boston, MA, with experimental drugs/chemo, and it seems that the tumors are shrinking. I don't know all the details, but my point is that no matter what the prognosis, don't give up. Do a lot of research. Ask a lot of questions. Find support groups near you. There just may be an organization or facility near you that can help.
I wish you the best of luck, and you and your husband will be in my thoughts and prayers.

annie5379
Posts: 9
Joined: Dec 2003

Thank you for your responses.....My husband's bone scan was clear.... He has alot of coughing and congestion now. His ct scan is set for June... It just scares me to think of what could be happening in the meantime....

Plymouthean's picture
Plymouthean
Posts: 264
Joined: Jan 2004

Don't get anxious about what could be going on between scans, treatments, etc. According to my doctors, NSCLC is very slow growing, so nothing drastic will happen in a short time. Keep your attitude, and that of your husband, positive. I know that that's easier said than done, but it really helps in the battle to beat this.

jkeen
Posts: 33
Joined: Nov 2002

You need to have good communications with your doctor and do research yourself to see what is out there and what can possibly be done. The more you know the easier it is to deal with the situation. Stay active is his care, read up on the different treatments and have faith in God.

melaniej62
Posts: 2
Joined: Feb 2004

I had a tumor in my brain that turned out to have come from my right lung. It took over a year to finally find a tumor in my lung.

Do they test his blood for CEA levels? That can often show if there is progression of the cancer, or if it is stable.
Also if you already have not done so, get another opinion. If I remember right NSC lung cancer puts him in a better more survivable category than Small cell cancer of the lung. Stage 3 is pretty scary, but remember Stage 4 is even worse.
If his lung disease that you mentioned could be under better control, like with more respiratory treatments than just the nebulizer....maybe a respiratory therapist could do some other kind of resp. treatments on him to help him breathe better. If his existing lung disease was improved maybe he could tolerate chemo----but his blood work needs to show that he's stable enough to endure the chemo.
If your husband is in bad shape, chemo could lower his health status.
My mother had the same kind of cancer but was in Stage 4; Her Dr's in Houston found ca in her bones also and gave her radiation to spots in her hip and spine in addition to chemo, (she was 55), and shortly after the radiation on her hip was over, the hip fractured in her hospital bed at home, and she had to endure a total hip replacement from which she hardly ever wanted to walk because of the pain. The
chemo weakened her so bad that with all the treatments she got vs the amount of time she lived, and the quality of her life, I was angry at her Dr's for giving us-her family -false hope. What finally killed her 7 months later was a blood clot that went to her lung.
Don't give up hope and be sure to get another opinion if you are not happy with your husbands Dr's.
In my cancer case I had my right upper lobe removed, and before that the brain tumor removed, and then had brain radiation treatments. I go see the Dr. every 3 months. this all started in 1999.
I pray you both are doing okay, as I note that you wrote this in April. This is my 1st time on this site.
God bless you both

DottieM
Posts: 1
Joined: Jun 2004

Hi I'm Dottie caretaker of my parents Joe & Dorothy both in their 80's with multiple health problems. I moved here in January because dad had a mini stroke which he is doing well from now, then problems with his heart in March almost had a pacemaker and defibilator installed but doctors changed their minds. Mom had a stroke in May after 5 heart surgeries last year.She has been a survivor of breast cancer 15 years now, total masectomy.
Dad has had melanoma cancer for 5 years first on his face, arm, legs, back, then his lung 2-1/2 years ago. Last week they found melanoma in his lymphnodes around his stomach and back, his prostrate the size of a soft ball. Thought there was cancer in the spine because of PET scan but the bone scan said no.They are doing another CT scan this week and a biopsy of the lymphnodes. Dad is 85 and knows he is in borrowed time I pray the cancer takes him qickly and he does not have to suffer long. He is in allot of pain in his spine and lower back. The doctor told me Friday he has a few weeks to live only would give him radiation to help with the pain. Does any one know about this type of cancer and what do we have in store for us? What can Hospice do for us?
Dottie Marek

joanie4
Posts: 3
Joined: May 2004

annie. my husband also has stage 111 nsclc and had pneumonia prior to the diagnosis of lung cancer... i know what you are going through.. his also is inoperable but hes being treated with chemo which he just started... how is ur hubby doing.. keep in touch and i sure wish him the very best...

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