Juanita61 Posted January 28, 2017 Share Posted January 28, 2017 Hi everyone, I found this site and hope that someone out there may help me. I have just been diagnosed, and won't know more until I see a specialist next Wednesday. I found out approximately a week ago that I have a golf ball size mass in my right lung; I understand a biopsy needs to be done to grade the tumor etc etc. What is worrying me, and really driving me crazy (as if the diagnosis isn't enough), I just don't seem to want to stop smoking!!!!!!!!!!!! Why is this? I understand that I have been using cigarettes for many many years as a supposed tool to help me with stress (also PTSD sufferer, with depression and anxiety), but surely being told this you would think it would be the first thing you change. Yes it's a high stress time, but this is my life. And my constantly beating myself up over it is just making it worse. Did anyone else have problems with stopping? I suppose I'm hoping that it's not that unusual, that it can be difficult, that I'm not alone. I am, I think, really scared, and I say "I think" because I just don't know. So many emotions, so many questions as I'm sure you all understand. Either way, I am glad I have found this site, by all accounts support is everything. Thank you Quote Link to comment Share on other sites More sharing options...
Donna G Posted January 28, 2017 Share Posted January 28, 2017 Hello Juanita, I also found I had a golf ball sized mass in my right upper lung and was told I had lung cancer. I know this is a very stressful time. So sorry to hear besides this you struggle with PTSD. I was able to quit and that was over 19 yrs ago. It can be done. Do you take any meds for the PTSD or get counselling ? There are also meds to help you to stop smoking that I didn't have available years ago. My prayers go up for you for this is a very difficult time. Have hope with good treatment it is possible to conquer this !! Keep us posted , let us know how it is going. Donna G Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted January 28, 2017 Share Posted January 28, 2017 Juanita, I am addicted to nicotine. Almost a month after I was finally able to quit, cold turkey, with enormous difficulty, I was diagnosed with lung cancer. I got to the point where I wanted to stop smoking and stopped. I'd tried many times before but was unsuccessful because I really didn't want to stop. So for me, wanting to stop was the key. It may be for you also. You may want to tell us about the "typing and staging" of your tumor. As you mentioned, this will result from your biopsy and scans. Once this is known, folks here can wade in a share their treatment experience with you. You are most welcome here. Stay the course. Tom Mally 1 Quote Link to comment Share on other sites More sharing options...
Lydia V Posted January 29, 2017 Share Posted January 29, 2017 I also struggled to quit smoking. Eventually I was successful with Welbutrin and Nicorette gum. Since then I became a cessation specialist. Do you have one in your area? One of the 1st steps is to identify triggers (coffee, alcohol, driving, talking on phone etc.) The next is altering the pattern of each triggering event. I wish you the best of luck! Lydia Tom Galli and Michele 2 Quote Link to comment Share on other sites More sharing options...
Juanita61 Posted January 29, 2017 Author Share Posted January 29, 2017 Thank you everyone, it's great to hear that I';m not alone with this and I will be back!. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Sue1147 Posted February 7, 2017 Share Posted February 7, 2017 Sue1147 Just signed up for this group! My 38 yrs old daughter has just been diagnosed with 3b adenocarcinoma! Today she had a mri to rule out brain lesion before starting her treatment next week! Mri showed very small lesion on her brain! Now we back up and reassess treatment options! I am terrified! This is my child! I am in a place I want something done now!! How do I be a brave face for her when I am a basket case! Any input will be appreciated! Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 7, 2017 Share Posted February 7, 2017 Sue, Welcome here. I was the patient so I really can't speak to having a child with Stage IV cancer. I was the basket case; my wife was my support system. I don't know how she did it because I was the opposite of a "model patient". I can tell you, however, her contribution to my treatment success was invaluable. In fact, I was several times on the verge of giving up. But Martha was the rock prodding me and my medical team to try another way. Right now you of course are in shock. Give yourself a couple of days. Then get to know the enemy -- adenocarcinoma. Read into the disease. I suggest LUNGevity.org Lung Cancer 101 as a good first source. Knowledge is power and the power you are seeking is the ability to ask the TPQ -- terribly perceptive question. For example, the first one you might want to ask is for the pathologist to check for genetic mutations in her cancer. There are targeted therapies, new and very effective treatments, that attack certain strains of adenocarcinoma. Checking for these mutations is pretty standard but I'd ask to ensure it is done. Stay connected with us as your daughter navigates the diagnosis phase. Let us know about her treatment plan when it emerges. Then folks here that had your daughter's treatment regimen can wade in and convey their experience. Stay the course. Tom LaurenH and Mally 2 Quote Link to comment Share on other sites More sharing options...
Sue1147 Posted February 7, 2017 Share Posted February 7, 2017 Thanks! I will continue to post updates on treatments! Sooner the better! I look forward for comments and knowledge of others that have or are going through this! Mally and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted February 7, 2017 Share Posted February 7, 2017 Good morning, Sue. My mom was in your shoes last year; I was 46 when I was diagnosed with late stage adenocarcinoma and it shook us all to our knees. I had an MRI and CT after surgery and before treatment began. My cancer had metasticized to my thyroid, so I got a bonus thyroidectomy last year. My oncologist tells me that it is very common for lung cancer to go to the brain, but has also told me that doctors are having great success with radiation for the brain mets. Please keep us posted on your daughter and you. I swear the diagnosis is harder on the family than the patient. But if you want to yell, cry, throw things, pray - do all of those things. Just know we're all here to support you and your daughter. If you need inspiration, you don't have to go any further than this site. There are quite a few long term (10+ years) survivors on this board who have sage advice and inspiration. Mally, Tom Galli and Sue1147 3 Quote Link to comment Share on other sites More sharing options...
Sue1147 Posted February 7, 2017 Share Posted February 7, 2017 Thanks for the response and the personal experiences! We see neurologist Thurs. Morning and then oncologist that same afternoon! It has only been 2 wks since her diagnoses and it seems like a year! As a mother, I want action! I love you all and thanks again! I will update and count on you all for support. Susan Cornett and Mally 2 Quote Link to comment Share on other sites More sharing options...
Sue1147 Posted February 12, 2017 Share Posted February 12, 2017 Update! We saw neurologist! He said lesion is so small, he thinks stereotactic radiation should take care of the lesion! We have appt. with radiologist on Monday! Oncologist told us our daughter tested with 2 of the gene markers! PDL1 and alk! She is going to start on the new drug xalkori as soon as brain lesion is radiated! She was very hopeful with this gene therapy! Working with insurance to see how much the drug will be! Praying and believing it will work out for her to take the drug!! Any input will be appreciated!! LaurenH 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 13, 2017 Share Posted February 13, 2017 Sue, Well that is certainly good news. Many I know have had successful radiation sessions on lung cancer tumors in the brain. If oncologist said her tumor has the ALK genetic marker, then your daughter likely has the adenocarcinoma form of NSCLC. New targeted therapies for adenocarcinoma are indeed very effective. Here is some information about targeted therapy in the form of an ALK Inhibitor and the drug Xalkori. You both are quite correct. Your daughter's form of lung cancer is very treatable and you should look forward to good results. Other folks who've taken Xalkor or Crizotinib please chime in about the cost and side effects. Stay the course. Tom LaurenH 1 Quote Link to comment Share on other sites More sharing options...
Mally Posted February 13, 2017 Share Posted February 13, 2017 That is great news sue Sent from my SM-N920I using Tapatalk Quote Link to comment Share on other sites More sharing options...
Sue1147 Posted February 13, 2017 Share Posted February 13, 2017 We went to radiologist today! He was great ! My daughter loved him! He went over the pet scan and mri with is! He gave full easy to understand explanations and we felt very confident and informed! We go back on Wed. Feb.15 for preliminary work for treatment! He is going to be very aggressive and that was music to my ears! Will update! Thanks for all the comments! Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Donna G Posted February 13, 2017 Share Posted February 13, 2017 Sue thanks for the update. How wonderful that the doctor was so nice and explained to you guys so clearly. Sounds like it will just be a couple of days and you'll be jumping into treatments. Great news. Donna G Sue1147, Mally and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
Sue1147 Posted February 18, 2017 Share Posted February 18, 2017 Update on my daughter! Tuesday the 14th. She was having shortness of breath and loud wheeze! We went to the oncologist office! They ruled out blood clots with ct. They admitted her to the hospital and put her on nebulizer treatments and iv steroids! She improved quickly! Yesterday they did the stereotactic radiation on her brain! She was discharged from the hospital! They have decided she probably had a mucous plug in the bronchial tube where the tumor is located! Today she had 2 radiation treatments on her lung! This will hopefully help shrink the tumor back and relieve some of the narrowing in that tube! She will have 1 radiation treatment a day for the next 3 weeks! She will then start the drug xalkori! This drug shows great progress in patients with the ALK gene mutation! She has the ALK and the PDL1 gene mutation! So there are options on the horizon for gene therapy! Thank you and I 'll update! Mally 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 18, 2017 Share Posted February 18, 2017 Sue, Unfortunately, I know all about mucous plugs. I have bronchus stump scar tissue in my airway and it is a constant source of irritation, especially during allergy season. I notice you live in Kentucky. When I was stationed at Forts Knox and Campbell, I suffered horribly during the pollen season. Now with and irritated airway, I also have problems in Texas and they are shortness of breath and congestion. On the next doctor's consultation, ask about obtaining a prescription inhaler to help her with these symptoms. She'll likely have them again, even after radiation. I use a Combivent B-1 inhaler to diffuse my shortness of breath and congestion symptoms. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
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