TAnn Posted January 4, 2006 Posted January 4, 2006 Well, I had my doctor's appointment last Wednesday to discuss taking a "break" from the Alimta, based on the very severe pain in my abdomen right side and a trip to the er. They thought it was the Alimta aggrivating my liver. Had a ct scan the next day. My doctor's nurse practitioner called me yesterday with the results. I'm feel stable enough now to share the results with all my friends here... There are several items, so here is the "laundry list".: 1. Primary tumor in right lung has increased from 2.6cm to 3.0cm. 2. Lymphangetic spread in right lung has increased. 3. Pleural lining in right lung has increased thickening. (the tumor cells in the lining have grown) 4. Adenopathy (lymph node involvement) is seen in the subcarinal and right hilar regions. 5. Pulmonary metastases in left lung have grown. (these are small, noted one grew from 5mm to 7mm) 6. New pleural effusion in left lung. Think all that sounds bad??? Here is the really bad one: 7. Peritoneal carcinomatosis. Masses in my abdominal cavity along with cancerous fluid in the abdomen. I've never even heard of this so I looked it up and found that is a very rare occurance in lung cancer patients. Well, if it's rare, I'm there! .... Waiting for a consult in the clinical trial dept. at MD Anderson & see if I can match up with anything. Peritoneal carcinomatosis does not respond to chemotherapy. Prognosis is bad. Anyone heard of this type of metastses? Worst part was having to hear all this bad news from my nurse practioner, whom I really love, but can't answer my questions the way my doc can. He's away with his wife who just had a baby girl. All this bad news at once....I'm still trying to wrap my head around it. I let myself have a pity party with myself yesterday. Today, honestly I'm just mad..... If any of you have any prayers left, I could sure use them about now. TAnn Quote
Nancy B Posted January 4, 2006 Posted January 4, 2006 Oh TAnn, I don't have any answers for you but I have a great many prayers for you. You are quite a bit younger than me, but your son looks about the age of mine (24). Aren't they just great? TAnn, please keep the faith, I believe in miracles and will be praying for one for you. Take care. Love and hugs, Nancy B Quote
icbn Posted January 4, 2006 Posted January 4, 2006 TAnn I am so sorry to hear the news. I am glad you are looking at special clinics. To that end I saw this posted elsewhere on the LC boards tonight and thought it would be helpful to you. www.corpangelnetwork.org It is the availability of free flights for cancer patients to Cancer Treatment Centers. They require a 3 week notice of your appointment date. It may help diminish distance and expense from standing in your way of being cured. I am praying for you. Quote
cindi o'h Posted January 4, 2006 Posted January 4, 2006 oh Teri.. that sure was a list. No, dear never heard of that last met. You know, on the rad report it always sounds bad. Heck mine sound bad and I have never even had a recurrence...it somehow reads alot like yours!!!! I wish your doc were there too so that he could tell you how bad it isn't. I just know it isn't Teri. And yes. It will probably mean doing treatment that you didn't plan on. But, what's new???? Hang in there, gal. Lots of loving prayers coming your way! Cindi o'h Quote
carolhg Posted January 4, 2006 Posted January 4, 2006 I STILL BELIEVE in the power of prayer and miracles from God. You are in my prayers. I look forward to your appointment at the cancer center. Prayers Quote
karenl Posted January 4, 2006 Posted January 4, 2006 Teri I'm sorry you got such crappy results.....sending lots of love and positive thoughts your way, and the hope that a new treatment plan can be put in place quickly. Love Karen Quote
ginnyde Posted January 4, 2006 Posted January 4, 2006 Teri, this news had to have been a shocker, I am so sorry. Glad the pity party is over and the boxing gloves are back on - I believe that attitude is a difference maker. Prayers and prayers and prayers. And here's an extra prayer that they find a clinical trial that has your name on it. Quote
mamasbabygirl Posted January 4, 2006 Posted January 4, 2006 Crap, I was thinking that Alimta was doing you good. I guess everyone did. I will pray for something that helps the progression. Chin up girly.. Quote
gail p-m Posted January 4, 2006 Posted January 4, 2006 Teri-- I'm so sorry to hear all that bad news at once. Sending many, many prayers for the upward spiral to begin and SOON! gail p-m Quote
bunny Posted January 4, 2006 Posted January 4, 2006 Teri, I'm mad too. I wish you'd gotten better news, but keep the faith. and please, lean on us. xoxo amie Quote
marym Posted January 4, 2006 Posted January 4, 2006 TAnn, I'm so sorry to hear your results. I get my next ones tomorrow - so I'm in that mode. You will be in my prayers - MB Anderson has many trial going on, so I hope they can help you. Best wishes - hang in there! Mary Quote
Kasey Posted January 4, 2006 Posted January 4, 2006 (((TAnn))), When I hadn't 'seen' you around lately, I was hoping it was due to you feeling pretty good and doing things over the holidays. So I am truly sad and dismayed at this news. I have NO idea about any of your laundry list of issues....sorry. But I come loaded with so many prayers that it could knock your socks off. So get ready, Teri. MANY high powered ones will be headed toward Texas. I am SO hoping MD Anderson has something for you. Much love and concern and hope and prayers, Kasey Quote
shineladysue Posted January 4, 2006 Posted January 4, 2006 (((Teri))), Reading all this saddened me, but I'm sure you will have a better understanding of these findings when your doctor can explain them. I know we care about the nurse practitioners at Mike's doctor's offices too , but it's not like hearing from the doctor. My prayers for better news and a good treatment plan. Please keep us posted. Love and Prayers, Sue Quote
melindasue37 Posted January 4, 2006 Posted January 4, 2006 TAnn, I'm sorry to hear your results. Sending love and prayers your way...and hoping you will get good news that they have just the clinical trial just waiting for you. Keep the faith. Warm Hugs, Melnida Quote
kimmek Posted January 4, 2006 Posted January 4, 2006 Teri... So sorry to hear this news, but as someone said lets wait and see what doc says maybe its not really has bad as it sounds. I have never heard of the last thing either and I thought I had learned pretty much all there was to learn about lung cancer, yeah right! Glad to hear though that the pity party was a short one and your back to fighting mode. You are one tough cookie and if anyone can fight this you can. Kim Quote
CharlieD Posted January 4, 2006 Posted January 4, 2006 Terri, Plenty of prayers left my friend. All wrapped up ino one big package, it sounds scary. I think mine looks very similiar to yours, but I have just been going with how I feel. I think you're lucky to be so near to MD Anderson. If anyone can get to the bottom of it, they can. I think and hope and pray that they will take the whole thing apart and address each separately which I doubt will be so scary. I pray for that. In the meantime, chin up as usual and keep the faith. Been worried about you. God Bless. CharlieD Quote
Frank Lamb Posted January 4, 2006 Posted January 4, 2006 TAnn,geez I was sure hoping for better results.I never heard of the peratoneal carcinomatosis.I do recall about a year or so ago after a ct scan they told me there were over a dozen masses in my abdomen which scared the bejesus outta my wife and I.Since then I have had scans every 3 months and they never showed up again.I do know however what a gut wrenching feeling that can be. Hoping the Dr. can provide you some answers and solutions. Quote
MilliBr1 Posted January 4, 2006 Posted January 4, 2006 Sorry to hear this and hoping and praying the doc can shed a more positive light on this list. Quote
Jyoung20 Posted January 4, 2006 Posted January 4, 2006 I am so sorry to hear those results. You have my prayers. I know God is listening. GOD BLESS!! Jamie "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24 Quote
shirleyb Posted January 4, 2006 Posted January 4, 2006 TAnn, Sorry to read about your bad news. Not a fun way to start the new year out. I hope you are able to find some help with all the advise others have given. You are in my prayers. Shirley Quote
J.C. Posted January 4, 2006 Posted January 4, 2006 Ann, Sorry to hear this news, There is a clinical trial NCI trial number: NCT 00052962 for the peritoneal carcinomatosis. After your tests at Anderson you may look it up. Wishing you the best Ann. Prayers will be there. Hugs Jackie Quote
Tami Posted January 4, 2006 Posted January 4, 2006 TAnn, Many thoughts and prayers are coming your way. I hope that your doctor will give you some answers and that treatment will be the next step. I have a link to a website you might find interesting. I know it's not much but this is a doctor that treats this condition a bit differently than most. Might be interesting to read about his ideas at least?? http://www.creighton.edu/CancerCenter/L ... yCare.html Thinking of you!!! Tami Quote
Carleen Posted January 4, 2006 Posted January 4, 2006 TAnn, I am so very sorry you received such staggering bad news. I understand what you felt by stepping back before you could come here and even talk about it. Bad news can not only temporarily take our breathe away, but sometimes also our voice. It's hard to talk about it to everyone when you don't even want to admit to it ourselves. I am saying many many prayers for you to receive more positive information and treatment advice for these lastest developments from your onc. I don't know much about pertoneal cacinomatosis, but I did look around a bit and found a few articles that offer some positive hope and outcomes. I've attached a quote from one that talks about how this condition which once had dismal prognosis' now has long term survival. The full article is at http://www.cancersurgery.com/peritoneal.html Keith and I send you all our love, and we will keep you close to our hearts and in our prayers. Aggressive cytoreductive surgery with or without chemotherapy has been shown to be beneficial in several studies. First reported in the 1980s, intraperitoneal chemotherapy has been described as a safe treatment for peritoneal carcinomatosis and is currently under evaluation in several centers around the world. The administration of hyperthermic intraperitoneal chemotherapy at the time of surgery has added another option for the management of these conditions. New treatment strategies, including peritonectomy procedures and perioperative intraperitoneal chemotherapy, have achieved long-term disease free survival in this group of patients with terminal conditions.Despite the aggressive nature of this combined therapy, it is generally well tolerated, with mild to moderate hematological toxicity being the most commonly associated result. Other complications related to the surgery may be significant, but in general can be managed by a specialized team that follows the patients closely during the postoperative period. The type of chemotherapy used depends on the type of tumor being treated. On follow-up, quality of life studies have demonstrated the recovery of normal activity in a significant number of patients. Long-term survival has been achieved in several studies. For a detailed description of the procedure, complications and results, see references below. If you have any questions, please contact Dr. Sardi at: Armando Sardi, M.D.,F.A.C.S. Chief of Surgical Oncology Medical Director Clinical Research Center Department of Surgery St. Agnes HealthCare, Inc. 900 Caton Avenue Baltimore, MD 21229 Phone: 410-368-2702 Fax: 410-368-3569 E-mail: asardi@stagnes.org Quote
Ry Posted January 4, 2006 Posted January 4, 2006 What a blow--it is a lot to take in. I am absolutely in awe though as I read the answers to your post how good we are at helping each other. Not just support, but Katie gave you a good tip and then here's JC with a trial and Carleen with info too. Unbelievable how fast we pull it together. My only other suggestion would be to post in the Ask the Experts--John seems to be pretty up on what's out there and how to find it. Quote
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