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28/F with Stage IIIB adenocarcinoma NSCLC - gene mutation???

tropicgirl2780's picture
tropicgirl2780
Posts: 9
Joined: Dec 2009

Hello everyone. I was diagnosed on Nov. 5th with stage 3B lung cancer. Needless to say I am emotionally a wreck right now. I am only 28 years old and I have a 15 month old daughter and a 5 year old son. I have a very small tumor, in my opinion, 1.2 cm in my right upper lobe. I also have 4 lymph nodes in my mediastinum, right below where my airway splits. they are huge! The biggest measures 4.3 cm X 3.2 cm. I also have a supraclavicular node in my neck. PET scan shows no progression to brain or anywhere else. I am going to the UNiversity of North Carolina for treatment. My Dr removed 90% of node in my neck for a biopsy and to test for a EGFR gene mutation. Has anyone out there had the test and had it positive? Is anyone doing the clinical trial? I should have the results back next week. If it's not a mutation then I start chemo/rad combined immediately. Are there other young people with NSCLC and how do you cope? I really would love to chat with some of you and have a support group because right now I feel like I want to climb out of my body and run away.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Hi, Tropicgirl,

I had the test to see if I had the mutation and it came back negative. However, as my Dr. says often, a negative result does not mean that you won't respond to treatment with the pill. I was in an earlier clinical trial with a targeted drug and responded very well to it, and now I'm taking Tarceva (a pill), another targeted drug, and doing well with it.

I wish you luck, anyway :)

SherrySt
Posts: 2
Joined: Nov 2009

I'm so sorry you are going thru this. Getting this diagnosis is so hard, but please know that there is help and support available to you.

I do have the EGFR mutation, but I have been staged 1A and had surgery 5 months ago. If I should have a recurrence, knowing that I was positive for the mutation will help determine future treatment. I am not involved in any clinical trials.

I wanted to respond to you to tell you about cancergrace.org. If you go there, you will find tons of valuable information and can ask the oncologists general questions. You will also find many, many lung cancer survivors who can help to make you realize that you CAN live with this monster.

tiffmomiff's picture
tiffmomiff
Posts: 5
Joined: Aug 2009

after six rounds of carbo, taxol and avastin......he initially presented witha whopping 6cm tumor, medistanial lymphnode involvment and left adrenal gland met....now, after four months, SCANS ARE CLEAN!!!!!!!! he is now on avastin every 21 days for maintenance.... if this monster comes back, we will then squish it like the bug it is with tarceva.

belleb76's picture
belleb76
Posts: 3
Joined: Nov 2009

Hi. I'm 33 years old and was diagnosed with Stage 3B NSC lung cancer in February so I know what you're going through. My first treatment was Tarceva because my doctor thought I would have the EGFR mutation however, I was on the med for 5 months and my cancer progressed into two other areas of my lung. I was taken off that and then went through radiation and chemo (cisplatin and alimta). Those were rough but now I'm just on Alimta since you can only taken cisplatin for so long before it becomes toxic. My tumors aren't shrinking but they remain stable.
Ask you doctor to be tested for the ALK mutation and the EGFR mutation. I just went to Denver to meet with a doctor there who is doing a clinical trial for those people with the ALK mutation and is having amazing results. I've done so much research on treatments that are more common and those that are in clinical trials so please let me know if you have any other questions!
Also, I'm also having a rough time emotionally. There aren't any young people with this cancer in my area so it's hard to find support from people that really know what this is like. We can be each other's support system! Let me know what you need!

tropicgirl2780's picture
tropicgirl2780
Posts: 9
Joined: Dec 2009

It was great to see that there are other young people going through this. I tested negative for the mutations unfortunately. I am undergoing treatment at The University of North Carolina and I have opted for a clinical trial. I am on pemetrexid, carboplatin, and avastin every 21 days. I have done 2 doses and manged to do really well! I have only had about 3 days total of napping and puking. Usually the third day after treatment is rough and then by day 5 I am back to normal. I show no other signs of lung cancer other than the scans. I have no pleural effusion in my right lung at all and the tumor only measures 1.2 cm. I do have 5 lymph nodes involved including a collarbone which they just told me makes it stage 4. I had myfirst treatment Dec. 22nd and my next scans are Jan 30th. I can no longer feel the lymph node in my neckso that is promising. I go next on Feb 2nd for chemo. They aren't going to do radiation as they say the tumor is so small. The hardest part is my husband came home from a deployment due to this and I believe he is suffering PTSD on top of already being an angry person. I have begged his unit for help to which basically they watch out for their own. My drs are aware of the situation and are helping me and I am surrounded by awesome friends that I depend on for childcare and taking me to treatments as I have to travel 2 hrs to go. I just want to have people to talk to that understand. You seem to be like that. WHen I go to chemo it is so hard because there are 20+ patients in there and most of them look like they are dying and 80 years old. I walk in with all my hair still and 29 and otherwise very healthy and it's hard to sit there. Then at home I cannot talk about it with husband as he doesn't seem to "get it." HE acts like i have gone shopping or had a day at the spa if I have to take a 2 hr nap. I have pretty much cut him out of recovery right now and asked my friends to help as it's less stressful. Most days I am good but other days I look at my 5 and 1 year old and I just want to cry because it all builds up. I look forward to talking to you, please don't hesitate to message me - maybe we could even exchange phone numbers or email.

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