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Looking for info; friend's mother diagnosed with lung cancer; adenocarcinoma

fullyloved
Posts: 38
Joined: Oct 2012

I'm a regular on the lymphoma board, for that is the type of cancer I have. But I have just received news that a friend's mother has been diagnosed with adenocarcinoma. She has a spot on her liver in addition to her lung that they think is cancer as well. I've been doing some research, of course, online for my friend.

I already have some knowledge of lung cancer. My original cancer diagnosis was small cell carcinoma. So I of course hit the web after that diagnosis and discovered that the 5 year survival rate for most lung cancers is grim, though there are always exceptions to the rule. So you can imagine how I felt when I heard the news about lung cancer of my friend's mother. I just talked to her this evening and discovered that she really doesn't know all that much about lung cancer, and I didn't have the heart to tell her what I knew.

Anyway, I was wondering if there is anyone here who has or has had adenocarcinoma in say about stage 3 or 4, which is what I imagine the mother's stage is since it seems to already be in the liver. I would like to hear what your experiences were: what treatments were used, what side effects were there, did the treatments achieve remission, if so, did you relapse or did it stay away, how long have you had the diagnosis, did you try any "alternative" methods either instead of or in addition to "conventional" methods.

Thank you for any info you can provide.

dennycee
Posts: 643
Joined: Mar 2011

Twenty six months ago I was given ten month life expectancy - with treatment. If we met on the street you would not look at me and think lung cancer. Mine is also an adenocarcinoma. The prognosis for non small cell is usually much better than small cell. This is no longer an automatic death sentence. New targeted therapies are coming out just about annually it seems.

I had concurrent chemo and radiation, I was exhausted a lot and at one time forgot to take my post chemo meds so I got pretty sick but my caretakers got me through it. I had cisplatin and etopicide as my chemo. The platinum drug is hard on the system but it did it's job. My hair thinned but i kept most of it. I will never be cured but I am very stable. (I can hear my sister and cousin questioning the stable part as I write. Lol). With stage four cancer all treatment is considered palliative rather than curative, the patient may demonstrate No Evidence of Disease (NED) or like me no evidence of reoccurance-stable, they assume there are cells floating through the system that will eventually become a mets. There are 10, 15 and 20 year survivors out there.

Osteopenia became osteoporosis and I wound up with compression fractures on three vertebrae and four ribs. Two of the vertebrae have been repaired via kyphoplasty and the third is now ready to be repaired. Within two weeks of the back repair surgery I had both a pericardial and pleural effusion. They may have been triggered by the anesthesia or the cancer-no way to tell for sure. I had a pericardial window done and a pleurX catheter inserted by way of a Video Assisted Thoracic Surgery or VATS. recovery time was pretty good because of the less invasive nature of the surgery.

It has not been an easy recovery but it has far exceeded the expectations of my care team. I have worked hard at exercise (stop laughing guys). The exercise has made it possible for me to take a more active part in my own care and participation in household chores. The only alternative treatment (if you can call it that) was my daily ice cream therapy.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

What treatments were used? 38 days concurrent radiation, Cisplatin, and Etoposide

What side effects were there? Burned back and esophagus, plus fatigue (radiation), and hair loss (Etoposide). I managed to stay remarkably free of a lot of the nuisance side effects of chemo (e.g. nausea, neutropenia requiring medication)

Did the treatments achieve remission? Yes, for close to 2.5 years

Did you relapse or did it stay away? Relapsed (two small new growths in LL lobe, and possible active lymph node)

How long have you had the diagnosis? See title

Did you try any "alternative" methods ...? I'm really not a big believer in that kind of stuff, on the theory that if it worked, it would be commonly acknowledged by the medical community, and maybe somebody would have the Nobel Prize for discovering it. As a working theory, I guess I'd say if it's not going to hurt you or prevent your from seeking standard therapy, then go for it, but I think it's likely to be about as effective as copper bracelets or rabbits' feet.

I think a lot of the outcome hinges on the overall physical shape of the patient exclusive of the cancer. I'm positive that my conditioning pre-diagnosis (borderline fitness nut) had an effect on making my recovery fast and pretty much problem free. I have felt essentially normal since September 1, 2010.

Since your friend is Stage IV adenocarcinoma, I assume she's going to be tested for the various mutations that would permit usage of some of the newer targeted drugs (e.g. Tarceva, Xalkori). I was ALK positive, and am one month into Xalkori, which so far appears to be eminently tolerable (separate thread). I find out in a couple weeks whether it's working.

All the best to your friend's mother.

fullyloved
Posts: 38
Joined: Oct 2012

Thank you for sharing your stories. It's good to hear that this is no longer an automatic death sentence, and that living with it for years is possible.

From one cancer fighter to another, keep up the fight!

jowilson
Posts: 2
Joined: Jan 2013

Keep up the fight, indeed

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