lisaRN Posted September 4, 2004 Share Posted September 4, 2004 Hello, I am fairly new here. My husband was dx'd with Non Small Squamous Cell Lung Cancer with mets to lymph nodes in April.... He now has mets to liver and adrenal gland.... just started Iressa. We are praying for a miracle....it's a good thing we believe in them! I am 36 and a registered nurse. My husband is 41, NEVER SMOKED, and an accountant. We have a 14 year old son that we have homeschooled since kidergarten and he just began his first semester of college. The following is our timeline: 3/04 My husband, Ahmed, came down with a cough, doctor said he saw small spots of pneumonia on xray 4/05/04 Ahmed was not getting better, took him to ER at Yale New Haven hospital, he was amitted w/ collapsed lung and to rule out TB 4/07/04 TB ruled out, doctor concerned with abnormal CT scan, Mass appeared on right main bronchus 4/12/04 Bronchoscopy to biopsy mass in airway samples not sufficient, will need further testing 4/14/04 Esophogoscopy to obtain fine needle biopsies of lynph nodes, results = all were positive for Non Small Squamous Cell Lung Cancer w/ mets to lynph nodes on right side of chest and in the AP window (left side) 4/15/04 Surgeon refuses to remove right lung due to AP window lynph node involvement 4/15/04 Bronchoscopy with laser ablation of mass in right airway, lung subsequently reinflated 4/16/04 doctors say they want to be aggressive w/ treatment b/c Ahmed has always been very healthy, never smoked and is only 41 y/o 4/16/04 Brain MRI showed no mets 4/19/04 PET scan, docs say "nothing that we dont allready know about" -- no mets outside of right chest 4/21/04 Began six weeks of RT 1st dose of chemo (expect chemo to be 6 months) Chemo = Mitomycin, carboplatin, navelbine 4/25/04 Rehospitalized with fevers up to 103.5 5/09/04 still no known cause of fevers, docs assume they are tumor related and D/C him with Rx for Alleve 2x per day....oh and they pulled his porta cath "just in case" Porta Cath was clean and free of infection. Portacath replaced 1 week later. 5/18/04 chemo Tx #2...Mitomycin, Navelbine and Carboplatin 6/8/04 last radiation TX...appt with RT doc and Oncologist.... chemo Tx #3 scheduled for next week (6/15/04) 6/12/04 got call from chemo nurse...."congratulations, your dad is done with chemo" ALL DONE???!!!??? he hardly began!!!! WHAT HAPPENED???? WHY STOP NOW????? Oncologist said she re-read the article citing the protocol and it said stop after 2 Tx's 6/13/04 took Ahmed to Fox Chase Cancer Institute in Philadelphia for another opinion.... They said "NO WAY....DO NOT STOP CHEMO..." 6/15/04 took Ahmed to Dana Farber in Boston....they said the same and they called the oncologist at Yale. They called us back and said he could complete chemo at Dana Farber if we didn't mind travel to Boston because when they called Yale the oncologist said "I am not going to give any more chemo just to make them happy." Dan Farber also disagreed with original staging and the involvement of the lymph nodes in the AP window....they said there was no evidence of disease outside of the right chest and that the pathology slides from the esophogoscopy "must have been mislabeled" SCARY.... could he have had the surgery then??? After much research regarding our onc at Yale we discovered she is 78 years old and still PRACTICING !!!! Several docs said that the chemo she gave my dad was a much older regimen (about 15-25 years old) and much more toxic to the patient. 7/13/04 Dana Farber repeated PET and CT scan...showed progression of disease and now has mets to lumbar spine (L2 and L3) 7/15/04 found new oncologist closer to home that wants to be aggressive....gave us 2 choices .... "you can start chemo today or you can start chemo tommorrow." He started the same day with Taxotere 30mg/m2 every week. 8/18/04 Took Ahmed to Mayo Clinic in Florida... they said prognosis is extremely poor...less than one year.... they said Iressa was worth a try and told us of a clinical trial at Baylor University in Dallas for a vaccine for NSCLC 8/25/04 after 6 Tx's with Taxotere, repeat CT scan showed significant progression of disease ... now in left lung with mets to liver and left adrenal gland. 8/26/04 started Iressa...now we are praying for a miracle...we have also called for info regarding the vaccine clinical trial....we are praying he gets accepted. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 4, 2004 Share Posted September 4, 2004 Hi, Lisa, welcome to the community but sorry for the circumstances. Sounds like you have had a time alright but glad he is with a younger and more aggressive onc now, plus as you said, he is young and strong. Some here have had great results with Iressa, hope for that for you, too. Keep in touch? Margaret Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 4, 2004 Share Posted September 4, 2004 Hi Lisa, welcome . I also am an RN, and a 7 yr survivor. Hope we can help and I am sure your experience will help others. Donna G Quote Link to comment Share on other sites More sharing options...
betplace Posted September 4, 2004 Share Posted September 4, 2004 Lisa, Welcome to our community. I am glad you have found us, though sorry you are going through such a rough time right now. Hugs and prayers going out to you that you get the disease under control with the new onc. Blessings Betty Quote Link to comment Share on other sites More sharing options...
ginnyde Posted September 4, 2004 Share Posted September 4, 2004 Welcome Lisa to the wives club no one wants to join. It sounds like Ahmed has a strong advocate working for him which is so important. My husband was treated at Fox Chase, do you remember which doctor you met with? Glad you found us, you will get so much support and knowledge from the people here. Quote Link to comment Share on other sites More sharing options...
Ry Posted September 4, 2004 Share Posted September 4, 2004 Welcome Lisa~ Sorry you have a need to be here but like Ginny I too welcome you to the wives club. You and Ahmed have really been put through it. My husband is on Iressa and it has stopped the progression of his cancer. I hope it does the same for Ahmed. We have lots of members here that will help you and there is lots of infomation you can read on Iressa. I wish you all the best and please keep coming back and posting. We're all pulling for you. Rochelle Quote Link to comment Share on other sites More sharing options...
Justakid Posted September 4, 2004 Share Posted September 4, 2004 Lisa - Glad you found everyone here....they are great! So sorry for what your Husband has been put through! You are in my thoughts and prayers! Quote Link to comment Share on other sites More sharing options...
JaneC Posted September 4, 2004 Share Posted September 4, 2004 Lisa, I'm very sorry about all that you and your husband are going through. It's sounds like you are being a fabulous advocate for him and making sure he gets the best care. I am also an RN and have 15 and 20 year old sons. I'm glad you found this site - there is a lot of great information here. Quote Link to comment Share on other sites More sharing options...
Margaret Posted September 4, 2004 Share Posted September 4, 2004 Lisa, Glad you found the Board and have posted. I know that you will find support and care here, plus we will have the privilege of getting to know you and Ahmed. My experience has been that we all learn from each other in one way or another. Sounds like you two have been through a lot already and I pray that things get better very soon. Miracles do happen and it's right to believe so. Blessings, Margaret Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 4, 2004 Share Posted September 4, 2004 Lisa, glad you are here. So sorry your husband has gotten this disease and at such a young age. He is the same age as my daughter, and I have sons older and younger than that. Don't give up. Keep up hope. Mky wife was given 9 months and she is one month shy of 2 years. She has NSCLC, Stage IV, non-smoker. The main tumor migrated from her left lung to her upper spine (C6-T1). with mets to skull, left hip, right fibula and ribs. After chemo and radiation, she was clear for about a year, then tumors reappeared in her right lung, lymph nodes and rib. She is presently undergoing a different chemo. We will you both well. Don Quote Link to comment Share on other sites More sharing options...
J.C. Posted September 4, 2004 Share Posted September 4, 2004 Welcome Lisa, Not much I can add to what has been posted already. With you at his side, your husband has the right fighter. Keep us posted. please. Hugs J.C. Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted September 4, 2004 Share Posted September 4, 2004 Sorry for all the troubles you had. I have seen Dr.s stop cemo often. I personally don't believe in it. Cemo is so ulgy, yet sooo wonderful. Use all the tools you have. Discomfort and sickness is worth remission. If and when people ask my opinion I always go w/ cemo. Been there and have done it, it's worth it. Good luck to you all. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 5, 2004 Share Posted September 5, 2004 Hi Lisa and WELCOME. You and your husband have really been down a rough road. My husband is Stage IV NSCLC w/mets to brain, bones and liver, has a pericardial effusion and pleural effusion. He was started on Iressa the first part of June and is doing really well. We weren't given a lot of hope that it would help, however, he works every day, worked out in the yard for several hours today, and then we went out for dinner. He's planning a motorcylce trip next week (although I think he's a little wobbly about really going through with it, so we'll see). He gets new scans in a couple of weeks, and since he's doing so well, we are hoping to hear good news. I pray the Iressa will work as well for Ahmed. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
MJ Posted September 5, 2004 Share Posted September 5, 2004 hi lisa, welcome to the board. i'm sorry to hear about your husband's experience with his first onco. i'm glad that you got a second opinion. my mom has also just began taking iressa. i pray that i works for both of our loved ones soon. God bless, mj Quote Link to comment Share on other sites More sharing options...
Nushka Posted September 5, 2004 Share Posted September 5, 2004 Lisa, So sorry to hear about your husband's ordeal so far. It sounds like you two have been on a roller coaster. I am glad that you found this board. We all help each other as best we can and offer support. I haven't taken Iressa but lots of others on here have. I just wanted to welcome you and hope to see your posts often. Nina Quote Link to comment Share on other sites More sharing options...
Fay A. Posted September 5, 2004 Share Posted September 5, 2004 Hello, Lisa, It has to have been terribly discouraging for you and Ahmed to have been given so much conflicting information. I am very glad he is out from under the "mercies" of the first Oncologist. I will be honest with you. I do not think the problems you experienced were the result of the Oncologist's advanced age. One of my Medical Providers is in his 80s, and he is more than just competent. So if an explanation for her behavior is something you feel you must have, then I hope you will not allow the age factor to be used as an excuse. I will keep you and your husband in my prayers to receive the miracle for which we all search. Quote Link to comment Share on other sites More sharing options...
TAnn Posted September 6, 2004 Share Posted September 6, 2004 Lisa, I am so sorry that you have had to come here, but glad you found us. It sounds like your husband has a very wonderful wife and caregiver in his corner. This is so important. I was also diagnosed at age 41, never smoked, stage IIIB NSCLC w/malignant pleural effusion. Dr's said "statistics" say less than a year. Well it's been 16 months, so ignore those "statistics!" I have been on Iressa since May and so far so good for me. I just had a CT scan on Friday and will find out if I am still stable on Wednesday the 8th. Don't give up, and as some very wise people told me, when Iressa works, IT WORKS! Keep us posted on Ahmed's progress. Welcome to the site! TAnn Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted September 6, 2004 Share Posted September 6, 2004 Lisa, When I was diagnosed, everyday I believed was my last. I lie in bed every morning, frozen in fear. My mind palyed out the awful scenerios of what was to come of me. I watched this dreadful disease take both my parents within 2 weeks of one another. This board really helped me through some dark days, and is still pulling me through them. There is life after diagnosis. You'll see. I wish I could give you the answers, but mine aren't for you. I can offer you suggestions, but this is a journey different for all of us. If I can be an ear, I am always here for you both. Cheryl Cheryl Quote Link to comment Share on other sites More sharing options...
Arayden Posted September 7, 2004 Share Posted September 7, 2004 Lisa, I am sorry to hear about the ordeals your husband is going through. Being new to this sight as well, i can honestly tell you the people here are absolutely incredible and supportive. This is a very scary period, for both you and your husband. I know when i was diagnosed it seemed to hit my family harder then it did me. Just keep your spirits high, and remember things can still work out good for you. I will keep my prayers strong for both you and your husband. Quote Link to comment Share on other sites More sharing options...
Lisa O Posted September 11, 2004 Share Posted September 11, 2004 Lisa, I have had luck with Iressa so far and I wish your husband the same. Lisa Quote Link to comment Share on other sites More sharing options...
DebsSky Posted September 13, 2004 Share Posted September 13, 2004 Hi Lisa: I am so, so sorry for all the things that you are going through. I hope things turn around for you and all works out. Prayers for all, Deb Quote Link to comment Share on other sites More sharing options...
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