ChristinaMarie Posted August 12, 2008 Share Posted August 12, 2008 Hi. I am Christie. I am 27 and have been married for over 2 years to the love of my life, Mike. He is 39 and has recently been diagnosed with AdenoC with mets to the bones in his ribs and pelvis last Tuesday. He is a non-smoker. I will work up a timeline siggy when I get a chance. We had our first meeting with an oncologist today. Even though she belives they are bone mets (they lit up in the PET) she wants to biopsy at least one to make sure they are infact cancer. If they aren't then its a different ballgame maybe. The chemo regimen she wants him on is Cysplatin and Gymsynobene (forgive my spelling). I have heard on this website the about the "gold standard" of taxol/carbo/avastin so I am a little concerned I have not heard of these drugs before. I am also torn between starting chemo right away or waiting until after the biopsy confirms the mets. Because if its staged down, then surgery is possible according to her. However, I am not holding my breath that the hot spots are benign. Anyway, I am so glad to have found this website. I go here and read the survivors section when I am feeling really down which has been pretty much non-stop for the last week. I feel awful about it, I want to be strong for my husband, but instead he is having to be strong for me. Its all surreal. He has no symptoms and the main "tumor" is less than an inch in diameter. I am also mad about the lack of priority given to my husband between the initial appointment and the diagnosing bronchoscopy due to his age and "risk factors". We were told "I do not believe its cancer" so many times from April to his Bronc. 2 weeks ago and in that time period the CTs show the tumor grew. I know its pointless to be mad, but darn it I wanna be mad at someone! We are going to 2 more cancer centers to get a 2nd and 3 opinion, then we will make a decision. In the meantime, we are going with the MRI and biopsy. The oncologist today said that holding off on chemo between now and then will not impact survival much (ugh) but I do want to get started ASAP. Quote Link to comment Share on other sites More sharing options...
SandraL Posted August 12, 2008 Share Posted August 12, 2008 Welcome Christina Marie. I am so sorry to hear about your young husband. And it is just fine to get mad and frustrated at the lack of progress at the beginning of a diagnosis. Many of us have been through that frustration and can feel for you. You are in the initial scariest stages of this and boy it sure sounds like you are doing all the right things. It will get better once the treatment plan is in place and you get all the answers you need. Please take good care and keep us posted. Sandra Quote Link to comment Share on other sites More sharing options...
Donna G Posted August 12, 2008 Share Posted August 12, 2008 Welcome Christie. Boy you guys are in the most emotional, stressful time. I know I have been there. I started with chemo and daily radiation. Then I was able to have surgery, then more chemo. I started my journey 12/3/97 ! There is hope. Keep us posted on how he is doing , how you are coping, and what the plans for treatment are. Donna G Quote Link to comment Share on other sites More sharing options...
mary colleen Posted August 12, 2008 Share Posted August 12, 2008 Christina Marie, I am very sorry to hear of your troubles. Please do understand that that this disease is becoming ever more manageable, and that "inoperable" and even "incurable" do not necessarily mean "terminal". Many conditions are essentially incurable, but are highly treatable and many people do very well for long periods. LC is moving in that general direction for many. I would guess that the drugs you are referring to are Cisplatin and Gemcitabine, commonly known as Gemzar. This is a very common first line regimen. My husband had it as well. From Dr. Jack West's Cancer Grace site: My research at that time and after incicated that it was about the same in study effectiveness as Carboplatin/Taxol, another very common first line regimen. As for cisplatin/gemcitabine vs. cisplatin/vinorelbine, nearly all experts in lung cancer consider the platinum-based doublets to be nearly identical in activity, with main differences in tolerability. The three doublets that are included as "gold standard" choices in our large post-op chemo trial (with or without avastin) are cisplatin/navelbine (vinorelbine), cisplatin/gemzar (gemcitabine), and cisplatin/taxotere (docetaxel). I would consider any of these to be completely acceptable options. Cancer Grace is at www.cancergrace.org, and is filled with useful information that you may find helpful. Mary Quote Link to comment Share on other sites More sharing options...
recce101 Posted August 12, 2008 Share Posted August 12, 2008 Hi, Christie, welcome to the group. You're certainly on the right track with everything you're doing and are planning to do, and your husband is very fortunate to have you as his advocate. So far, everything your (his) oncologist has said seems quite reasonable to me, but it's certainly a good idea to get additional opinions. If you haven't already, I suggest you visit cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here. Here's an excellent article by Dr. West comparing four different first-line treatments for advanced NSCLC (adenocarcinoma, which your husband and I have, is the most common subtype of NSCLC). One of the treatments studied is the one you mentioned, Cisplatin and Gemcitabine (also referred to by its trade name Gemzar). Avastin is sometimes added to that and other "doublets," but Avastin was not a part of this particular study. The results of all four treatments, as you'll see from the article, were essentially identical: http://onctalk.com/2007/01/16/chemo-com ... adv-nsclc/ Again, welcome, and I hope to see you at cancergrace.org as well. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Flyman35 Posted August 12, 2008 Share Posted August 12, 2008 Welcome to the forum Christie. I'm sorry to hear about your hubby's diagnosis and your need to be here. It was about 3 months from the time my hubby started getting sick until his official diagnosis so I understand the frustration in waiting. We are a very supportive and knowledgable bunch here as you will find out. Keep posting, ask lots of questions and stick around so we can get to know you better. Keep us posted Denise Quote Link to comment Share on other sites More sharing options...
ChristinaMarie Posted August 12, 2008 Author Share Posted August 12, 2008 Thanks so much for the warm welcome. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted August 12, 2008 Share Posted August 12, 2008 Christie I cannot add to the wonderful posts you've already received but wanted to say heilo and welcome to the site. I am really glad you found us. Please let us know how we can help you and Mike. Warmly Christine Quote Link to comment Share on other sites More sharing options...
Don M Posted August 13, 2008 Share Posted August 13, 2008 Welcome Christie. I hope the biopsy shows no bone mets and the mri comes back negative. Don Quote Link to comment Share on other sites More sharing options...
Haleystitan Posted August 13, 2008 Share Posted August 13, 2008 Welcome Christie: I can't tell you how amazing the people on this site are. They are comforting and enlightening. I pray for good and speedy news for your husbands tests. I'm sorry your family has to endure such a painful time. My thoughts and prayers will be with you and your family. I look forward to hearing more about your husbands progress. Quote Link to comment Share on other sites More sharing options...
beatlemike Posted August 13, 2008 Share Posted August 13, 2008 Welcome Christie.Sorry about your husbands dx.I hope you can take that anger and aim it at kicking that cancers -ss.My prayers are with you both at this time. Quote Link to comment Share on other sites More sharing options...
peebygeeby Posted August 13, 2008 Share Posted August 13, 2008 Hi Christie, Just want to welcome you and wish you all the best. This is a wonderful group of supportive people here who know just what you are going through. Good luck with everything! Gail Quote Link to comment Share on other sites More sharing options...
dchurchi Posted August 13, 2008 Share Posted August 13, 2008 Hi Christina, I am very sorry you need us, but glad you found us. The 1st couple of months I think are the hardest as you and your husband get adjusted to what will become your "new normal". Believe it or not you will fall into a routine that works for the both of you. As my husband had Small cell lung cancer I can not comment on the chemo drugs, but many others will be able to help. My prayers to you and your husband as you embark on this unwanted journey. Quote Link to comment Share on other sites More sharing options...
Patti B Posted August 13, 2008 Share Posted August 13, 2008 HI Christie- Welcome to the forum. Am so sorry you find the need to be here. This is a really great place with lots of really supportive people. Ask any question and someone here will probably know the answer. The beginning is so hard and scary. It WILL get easier once a treatment plan is in place and you know exactly what you are dealing with. I think its a very good idea that you are getting other opinions - it never hurts to do that and then you can feel completely comfortable with your decisions. Please keep us posted on your husbands progress and please let us know how we can help you. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Adrian Posted August 15, 2008 Share Posted August 15, 2008 echo what Ned said re: chemo: carboplatin and cisplatin are both "paltinum based" chemotherapy. The Europeans favor Cisplatin, Americans, carboplatin. It's thought that cisplatin is slightly more potent (at the margins) but is also a bit more toxic than carboplatin. Doctor is probably favoring cisplatin for your husband because she thinks he is up to it (which I'm sure he is). Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted August 18, 2008 Share Posted August 18, 2008 Hi, Christina. Welcome to our group. Sorry you have the need to be here, but it is a great site for both emotional and informational support. My best to you and your husband. Affectionately, Carole Quote Link to comment Share on other sites More sharing options...
Janet B Posted August 18, 2008 Share Posted August 18, 2008 Hi Christina I just wanted to add my welcome to the others - they have all given you great advice. Use that anger - you need it sometimes! and it is okay to get upset - and down, we are after all, human! I am a huge advocate for second opinions - I feel a second opinion is the reason I am doing so well - so go for it! The others have told you - it does get easier - hard to believe but true and there is hope - lots of it ! I will be praying for you and your husband - peace Janet Quote Link to comment Share on other sites More sharing options...
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