kzander Posted August 30, 2003 Share Posted August 30, 2003 Hello Everyone -- Just wanted to let you know that reading this message board has been a life saver for my emotional well being. My 47 yo mother was just diagnosed with NSCLC this August. She is the mother of 3 girls, and I am the oldest at 23, followed by a 16 yo, and a 13 yo. Needless to say, our family went from being normal one day, to a complete wreck the next day. She had been struggling all summer long with blood clots in her legs and chest, when they discovered the lung cancer. As a matter of fact, she is currently in the hospital with a blood clot in her neck. She has a very small tumor in her lower left lung, but it has metastisized to her chest lymph nodes, a couple lymph nodes behind her esophogus, and to 2 nodes in her neck. They consider her inoperable, and are going to start chemotherapy this Tuesday. Since the diagnosis, she has been struggling to eat and sleep, as we all have been. I'm not sure if we are all still in the "SHOCK" stage, but our normal life got shot out the door. I was wondering if you all had any advice about coping methods for my family as well as my mom. She is pretty much down in the dumps. Another thing I wondered was if any of you had experienced blood clotting with your cancer. My mom is currently on heprin shots once a day and they just started her on Cumadin as well. Wondering if anyone one has any advice to give. My family is so new at this and is hanging on everyone's next word. I am also struggling to carry on with my life as well. Nothing seems enjoyable to me anymore. We just need a little direction or positive words, which the doctors seem to be greatly lacking of! Also wondered if anyone has gone to the Cancer Treatment Centers of America ..... my mom is heavily looking into that option and may head straight there before any more treatment in North Dakota. Thank you all so much, you all have been an inspiration! --- Quote Link to comment Share on other sites More sharing options...
Donna G Posted August 30, 2003 Share Posted August 30, 2003 I just finished posting this am re clots more common in people with tumors. I have seen levonox and coumadin used together and the "umbrella" filter put in to prevent clots from going to lungs and brain. Donna Quote Link to comment Share on other sites More sharing options...
LindaMRG Posted August 30, 2003 Share Posted August 30, 2003 Dear Kristy, Im so sorry to read about your post, but youve come to the right place. When my father was diagnosed in May I was at the lowest of low till I found the special people that come to this board. Im sorry I have no information about the blood clotting. I think one of our board members did go to the Cancer Center of Americas so type that in at the top where you see "Search" and you will find posts that may pertain to that. Ask your oncologist if after chemo would there be the possibility of surgery. Are the affected lymph nodes on the same side as the tumor? Also, in reading thru some posts you will find people at all stages of lung cancer, all different types some surviving amazing odds. Some going into remission after chemo with no surgery. Do research, ask oncologist questions till your satisfied. Keep us posted so we can help you through it. I know how that numbness and shock feel. Once there is a plan in place for your mom some of that will settle down because you will feel like you are doing something about it. Here are some links: www.alcase.org/index.html http://www.cancer.gov/cancerinfo/pdq/tr ... fessional/ www.cancerguide.org/mainmenu.html www.chemocare.com Dont concentrate on statistics, they are outdated. They dont take into account newer drugs and options for people, so STAY POSITIVE AND PRAY TOO!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
norme Posted August 30, 2003 Share Posted August 30, 2003 Kristy, I for one am amazed at why some can have surgery and others can't. my husband had his left lung removed along with 7 lymph nodes with 5 having cancer cells in them...just because she has lymph nodes with cancer, why can't they do surgery? Ask her onc why not???? You and your family feels like the sky is falling. One day everything is going along normally and bang, the sky does fall. But, once everything settles, she finds out what they are going to do for her, and she starts those treatments, all of you will find a little peace. It will be a tough road ahead for this is not easy going through treatments or even surgery, however, with her family behind her, helping in all ways one can, you all will get though it together and will find that little things that happen each day, mom eating okay, her being able to enjoy company, can mean a lot. Hang in there and post when you can.... Quote Link to comment Share on other sites More sharing options...
Debi Posted August 30, 2003 Share Posted August 30, 2003 Kristy, I went to the Cancer Center Treatment of America in Tulsa, Oklahoma for my surgery and was there for 6 days afterward in the Special Care Unit. There was also someone else on the board that had gone, and I know that they had been very impressed with it after having been to other facilities. While I have nothing to compare it to, I didn't have any problems there. I just had my surgery there, I did not have any chemo or radiation afterward. They have a mind/body person, nutritionalist, physical therapist and masseuse along with the normal areas you would find. Basically it is an institution dedicated to cancer treatment so you do get specialized care there. They also were very good about having rooms and meals for family members at low costs and for allowing family members to stay in YOUR room for as long as they wanted to. There also was no limit on how many family members were there. Obviously, they are very family oriented. Please keep posting and I wish your mom and your family the best of luck. Hang in there...and if you have any questions about CTCA, I'll be happy to try to answer them! Debi 47 years old nsclc-Stage 1A Surgery June 16, 2003, upper & mid lobe removed Quote Link to comment Share on other sites More sharing options...
bobmc Posted August 30, 2003 Share Posted August 30, 2003 Hello Kristy, Welcome and so very sorry your mom and family are going through this , Lung cancer is such a devastating disease and we sometimes forget that it really does effect the whole family. For me, I can remember going through that shock phase in the beginning, like your talking about, then the I got get as much knowledge as I can phase and finally just kinda putting one foot in front of the other, doing what the doc said and leaving the results up to God phase. However, it is a rollercoaster ride and certainly not easy. I have not been treated at Cancer Centers of America but as Deb says I have heard nothing but good news about them. I would sugest that your mom gets treated at a cancer center by cancer doc's and gets second opinions. It is real, real important to feel comfortable with your doc,s and treatment plans. Again welcome, glad you found us, you will find very caring and knowledgable people here, but most importantly you will find SURVIVORS, many and in all stages. God bless, be well and your mom and family will be in my prayers. Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01 " absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
chloesmom Posted August 30, 2003 Share Posted August 30, 2003 Hi Kristy, I am a 47 year old woman who was also diagnosed with NSCLC in June. I did have surgery and am now going through chemo. I have found so far that chemo is fairly tolerable. I take the anti-nasuea meds as they direct, and seem to be pretty ok. I was disappointed last week that I didn't get to have my chemo because my platelets are too low and this would have completed one full cycle. But, I am to see the md next week and get a cbc. If my counts are ok, they will treat me then. I think that people have had good things to say about the Cancer Treatment Centers of America. I have no personal knowledge, but you will find a lot of input on this message board. I also am seeing a therapist and taking anti-anxiety and anti-depressant medications. This I believe has been the most helpful thing for me through this whole mess. I am not on strong doses of anything, but I am capable of working, which is something I could not even bring myself to do prior to seeking help. That may be a good thing for you and for your mother. It just helps. Good luck to both you and your mother. My thoughts are with you. Quote Link to comment Share on other sites More sharing options...
kzander Posted August 31, 2003 Author Share Posted August 31, 2003 Thank you all so much for the quick replies ..... This hasn't been the easiest weekend for me or my family. I recently started a job in Tucson AZ, and had only been here 2 weeks when I found out the devastating news about my mom. I immediatly flew home for two weeks, while we took her in for her biobsy, waited for the results, and then waited to be contacted by the Mayo Clinic in Rochester, Minn. Like I said before, our lives went from completley normal one day, to completely miserable the next day. Now that I am back in AZ, I am really having trouble coping. I am here wiht my fiance ... we just got engaged in April, but I really wish that I could just go back to North Dakota and be with my family and my mom. I am struggling with anxiety, loss of apetite, trouble sleeping, and lack of motivation - especially at work. My mom however, seems to be doing a bit better. She is currently in the hospital with a blood clot (doctors say due to the malignancy in her body) and is scheduled to begin chemo this Tuesday. Something of which she is deathly afraid of. DEATHLY AFRAID of! Last week, she was even considering NOT doing it .... but I think she has come around. Is there anyone out there who can relate to being a family member and being far away from the situation. I am struggling daily with wanting to go back home and just be with her. Or anyone that has any "Chemo Tips" that I can give her. She keeps saying she would love to visit with someone who has had inoperable lung cancer and is living on a daily basis with it.... which many of you are. Thank you all so much for listening and providing helpful advice! Quote Link to comment Share on other sites More sharing options...
LindaMRG Posted August 31, 2003 Share Posted August 31, 2003 Hey Kristy, Tell mom not to be afraid of chemo. There is anti nausea meds given in the IV and meds you can take home with you. Have her take any anti nausea meds she takes home with her, even if she feels fine. Also, drink lots of fluids. Always report anything that is bothering her a lot. Many people do great with chemo these days. Ask lots of questions as to what she can expect. Quote Link to comment Share on other sites More sharing options...
Terrie Posted September 1, 2003 Share Posted September 1, 2003 Kristy- Welcome. I, too, found chemo to be very tolerable. You will be amazed that just taking that "one step at a time" approach will make this ride so much more bearable. I have two teenage girls, also (not to leave out my oldest and my youngest). They are aged 16 and 14. I have talked to them both and as I wrote before - they would be glad to email your sisters if they need someone to vent to. They have been through that shock - we told them right up front what we were dealing with. We were VERY fortunate to have a WONDERFUL support system with local churches and friends and family. Perhaps there are those for your Mom, too, that will help out with the pressure - and, of course, I think most of us here will agree that antidepressants help a good deal to get through. I will keep your Mom and your family in my prayers as I do all the members of this board. God bless. Terrie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.