Adenocarcinoma w/ brain mets Part II

I'm not trying to depress everyone and I'm not necessarily giving up , but it's been a long year for me. In 2003, I had about 1/2 of a huge (approx. 6cm by 5cm by 4cm) non-malingnant tumor (oligodendroglioma) surgically removed. I deferred radiation at that time and went back to work. The brain tumor was quiet until this year, when it resumed growing. I underwent 31 radiation treatments in February and March, and resumed working. Actually, I was working that whole time when I wasn't at the Rx or hospital. I was also taking Temodar during/after radiation. In May, I had an X-ray because I couldn't shake a cough. I figured it was pneumonia. Nope. 7cm and 3.5cm adenocarcinoma tumors and into the lymph nodes. Staged at IIIB. Started radiation late May, finally stopped working June 16, and finished radiation in July (38 radiation treatments on the lungs, 69 total for the year).

I started chemo about 6 weeks later and was supposed to have 3 sessions w/ massive doses of taxol and carboplatin. I got through 2 no problem except the cough kept getting worse and the chest x-rays were completely cloudy. Discontinued chemo. We tried a couple of antibiotics and now I've been taking prednisone( a steroid) for four weeks. The x-ray earlier this week showed 2 small (less than 1 cm) brain mets, but one of them is on the brain stem. We're in wait and see mode right now, to try to get the lung stuff under control. It's been a long year.

My object is not to see how long I can live under any circumstances. I therefore don't think the cyberknife is a very realistic possibility given the location of the tumor and the implcations it could have even if "successful") such as personality changes. I don't believe that Temodar really did any good. My brain can't take any more radiation. That leaves chemo. Tarceva appears to have more side effects than I'm willing to tolerate for the minimal benefit gained. Frankly, I can endure the pain (I have a relatively high pain threshhold) but I'm tired of feeling like crap, tired of doctors, tired of hospitals, tired.

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I had two surgeries to remove one brain met, First surgery April 2004, SRS afterwards to get any left over residual cells. Came back Nov. 2005 , same place, had surgery to remove Feb. 2006 not successful. Had Cyberknife Nov. 2006 this time it was crushing brainstem, need to get the pressure off..According to MRI, it worked, it is shrinking and I feel better. Go to cyberknifesupport.org/forum. There are real doctors you can ask questions about CK and than make your decision. Don't give up..

I was diagnosed March 2003, I'm tired of doctors too and the same things you are too. I am not going to give up, we are here for you, we are your support...Just know you are in so many prayers and we care.

Blessings and prayers,

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Hey T cubed,
I heard that from my wife many times. NSCLC, brain, liver,bone mets. She had a lot of complications but we met them as they came and resolved each one.
She had bad reactions to the usual chemo and many transfusions.
When she started Tarceva 150 things changed quickly for the good.
It either works or it doesn't but compared to anythng else Tarceva had the least side effects.
A manageable rash which calmed to almost null. Blood counts are always good now. Her only ongoing side effect is not being able to gain back some weight because of a feeling of nausea which is now manageable with Kytril antinausea.
Don't know what you heard but Tarceva was haven compared to Chemo and it's working, shrinking, and dissolving.
Tarceva is also used by some brain surgeons after surgery to kill remaining cancer cells.
This is an alternative to drilling holes in the scull and forcing in chemicals.
Have a better one, Chanwit

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One can not begin to put themselves into your shoes, without actually having been there. I have not. The only thing I can offer is prayer and tell you this is your journey and your decisions are based on what you feel is best for you. It is easy for someone like myself to say not to give up, when I am not the one who is going through the radiation, the chemo, and all that goes along with suffering a serious illness. I look at your age and I think, "you are so young, please don't quit," but, you are faced with some serious decisions. Those who have been battling their illness for years, know what you are going through. There are so many online here that know exactly how you are feeling. Lean to those who are on the same journey for wisdom and comfort. My prayers are with you for healing and peace of mind. Jolene

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You have been through so much and I am so sorry that you are having to go throught this. I can only imagine how tired you are. but please know there is always hope... I have been on Tarceva 20 months and during this time I have felt the more normal than I have felt since beginning treatment. I realize that everyone is affected differently ,but it may be the one that works and makes you feel better. I did read at some point that it does cross the blood brain barrier. Please never give up hope.. You are in my prayers!!!

GOD BLESS!
Jamie

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Jamie: What is Tarveva? Is that a chemical drug they put in the chemo treatment, or what? I am confused about it.

Thanks

Barb

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Tarceva is a targeted therapy taken in a pill form (normally once a day, every day) It targets the EGFR gene.....Epidermis Growth Factor Receptor ( or something like that) Very common side effect is rash. and dry skin....Tarceva came about after Iressa and was put on the market in Nov. of 2004.

It has worked very well for me and I pray that it continues to do so.... The side effects have been a pain in the butt but they have been tolerable.....

The cool thing about Tarceva is that you do feel almost like a normal person again...Nothing like chemo...I haven't experienced any fatigue, nausea, or weight loss. (but I have heard of others experiencing these side effects)
There is a wealth of information about Tarceva on the Genentech website.

Hope this helps!!
GOD BLESS!
Jamie

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