cindi o'h Posted September 24, 2004 Share Posted September 24, 2004 so, Just got back from the oncologist. He took a look at the films and wants me to see the thoracic surgeon for a videoassisted thoracentesis...Now I making up this word...he told me that he would drain the effusion from my lung and put a camera in there and take a look around.... then they will put the fluid under the scope to see if there are any cancer cells in there...if there are, then we go back to chemo again in the same week... it's all or nothin' for me. Well, it has been a long time since I completed radiation....way over a year, but the onc. said the effusions and lymphadenopathy could still be a result of that....(yeah right) Well, at any rate, we don't know until we know, right? So glad I can vent...Thank you, Cindi Quote Link to comment Share on other sites More sharing options...
Elaine Posted September 24, 2004 Share Posted September 24, 2004 Cindi I don't think the onc would tell you something that couldn't be true. My heart goes out to you as you endure more wait. I'll be thinking of you and sending good thoughts your way. love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted September 25, 2004 Share Posted September 25, 2004 Cindy,Sorry you are having discomfort.I hope this works well and gets you feeling better quickly. Quote Link to comment Share on other sites More sharing options...
paddy Posted September 25, 2004 Share Posted September 25, 2004 Dear Cindy, I hope you will find everything is still clear. Will be sending prayers for positive results. Paddy Quote Link to comment Share on other sites More sharing options...
Lisa O Posted September 25, 2004 Share Posted September 25, 2004 You have my prayers. Quote Link to comment Share on other sites More sharing options...
K and Kids Posted September 25, 2004 Share Posted September 25, 2004 I will keep you in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 25, 2004 Share Posted September 25, 2004 Hi Cindi, I'm sorry you have to go through all this. I know it's no fun at all. When is all this going to happen? Please keep us posted, and you will be in my prayers. Love, Peggy Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted September 25, 2004 Author Share Posted September 25, 2004 Thanks for all the kind words of encouragement and especially prayers... My onco was pretty unspecific when I went to see him and the most somber I have seen him yet. Dangit. I am scheduled to meet with the surgeon on Tuesday. My onco suggested that it would be a procedure that could be done in and out right there in the clinic. But the surgeon's nurse left a message saying that it would be scheduled in the O.R. I think it is going to be a VATS procedure, so a little more than what the onco led me to believe. I guess the anwser is that I don't know when it will be scheduled yet. Soon, I hope. I have got so much on my plate right now that this is just bad timing!! I am still quite brave. I am convinced that the cancer has done the multiplying thing that it is so known for. But, I am ready for whatever treatments that I need to do to keep kickin' for awhile longer. I'm usually pretty tough. I lost my rootin' crowd (siblings) at last round and they really helped a lot. But I have been abandoned by them. (It was too much/ inconvenient for them). Now that I don't have them anymore, I really need to gather up some more people to holler from the stands. EVERYBODY needs a cheering crowd whether they know it or not... I will let you know when all of this happens... Cindi Quote Link to comment Share on other sites More sharing options...
kim Posted September 25, 2004 Share Posted September 25, 2004 Cindi, Keep your head up girl! Additude is everything! Will be praying for you. Quote Link to comment Share on other sites More sharing options...
TAnn Posted September 25, 2004 Share Posted September 25, 2004 Cindi, I have never had a VATS, but have had 4 thorencenthesis (sp?). They are no fun, but are over pretty quick. If you are going into the operating room for yours, you will probably get a "good" sedative and THAT is a GOOD thing. I am hoping and praying that all comes out well, and will pray for your continued strength. Please keep us posted. TAnn Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted September 26, 2004 Share Posted September 26, 2004 Cindi, I had both a pericardial effusion and plueral effusions. They were about a year and half after original diagnosis. I just became short winded and very tired easily. I went in to see my onc and had a CT just before the visit. He had me check into the hospital immediately. The next morning I had surgery. The fluid was tested and a week later, I discovered it was not malignant, and yours may not be as well. The cause? Probably cancer blocking the drainage. I was told to start chemo. I was scheduled for it, but said "no, I won't go through it again if it only buys me a little more time." I took it upon myself to seek out other options, I narrowed it down to two choices of trials. After meeting with the infamous Dr. Neumanatis, who was doing GVAX, I choice a trial he was conducting. I was not eligible for the GVAX tial, but another with promising results. I am praying it works. I am doing a rial called CT2103. If succesful, I will do 20 weks total for two rounds. The I will probably do a vaccine made with other's cancers instead of GVAX. WORD OF ADVICE, HAVE THEM USE THE FLUID FOR A GVAX VACCINE TREATMENT IF IT IS CANCEROUS!!! DON'T JUST THROW IT AWAY. DISCUSS THIS WITH YOUR DOCTOR IF YOU HAVE SURGERY!!! GVAX vaccines are only made with efussionsand esaily assessble tumors do to the risks. One person was killed getting a tumor from within the lung, so they won't risk lives with surgery. Isn'that interesting. Like I said, I'd rather die trying to live. My cheering section seems less enthusiastic too. They are dealing with their own lives. This board has been a big support to me. They are like a surrogate family. May we be there for you as well. Cheryl Quote Link to comment Share on other sites More sharing options...
Fay A. Posted September 26, 2004 Share Posted September 26, 2004 Cindy, Have you been able to find out anything on the GVAX trial? If the fluid has malignant cells they may be able to use it to produce a vacine. Wishing you the best outcome no matter what you decide to do. Quote Link to comment Share on other sites More sharing options...
karen335 Posted September 26, 2004 Share Posted September 26, 2004 Cindi, You are in my prayers. You are a survivor and strong lady. Keep us posted... God Bless, Karen Quote Link to comment Share on other sites More sharing options...
Melinda Posted September 26, 2004 Share Posted September 26, 2004 Cindy-- Hollering from the stands for you loud and clear!!! (We New York City gals can be pretty darm loud when we choose to be, too! ) You are in our thoughts and prayers. Melinda Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 26, 2004 Share Posted September 26, 2004 Sorry to hear about needing a procedure but pleural effusions can definitely be caused by things other than cancer. Hopefully that will turn out to be the case for you. I'm interested in the idea of tissue banking for GVAX. Has anyone actually had this done? If so, I'd love to hear about how you went about doing it. I've not seen a GVAX update in a couple years, I know initially they were doing it in San Antonio but sounds like they are doing it at Baylor now as well. Going to a lung cancer update at University of Chicago in a couple weeks so hopefully they'll have more on it then. If anyone knows about tissue banking for GVAX, please post the info or pm me. Thanks! Quote Link to comment Share on other sites More sharing options...
cathyjack Posted September 26, 2004 Share Posted September 26, 2004 Hi Cindi, I aagree with cherl, ask them to keep all the fluid! My husband had thorocentis outpatient and was told it was not maglinant. He then had bronocopy done and was told everthing not maglinant but suspious. Then had VATS and fluid WAS maglinant. VERy confusing how twice it was negative but # 3 was postive.All of these procdures where within a 3 week time period. We are looking into the GVAX as well. My husband has an appointment on oct 18th with Dr. Nemunitis. I asked his onc of all the trails going on now which ones did he think were the most promising and he said the vaccine. For the VATS my husband was under anathesisa(SP?). Good Luck. you are in my prayers. Cathy W Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 8, 2004 Author Share Posted October 8, 2004 Hello All, I don't know how I missed all of these posts on the good advice regarding the GVAX. That is something that I had not heard of before. I will definitely keep my ears and eyes and most importantly mouth in gear for this. I have been having troubles. The surgeon is unwilling to do the VATS due to the Plavix, ( my heart med) and recent stent placement. And also the thoracentesis is out for the same reason. So, I have to wait until the 18th for my next CT to check any changes. I see the cardiologist in the morning to see if all of my SOB is originating in the pericardial effusion or what. I get shuffled from one doctor to the next and nurse to the next and it is all so difficult to put it all together. But, I have an above average understanding of the lingo and methods so in many ways that helps but I also find that it has it's disadvantages as well. All in all, I am handling all of this pretty well. I have a support group here in town that I really like a lot. I am the only lc person in it. And it is just made up of pretty sick and wonderful people with all kinds of illnesses. So that helps. And I am pretty sure this board is helping my nerves too. I went to my old boss' retirement party and got lots of good squeezes there. You can't have too many of those. Thanks for all of your encouragement and words of advice. I will try to keep you posted on my progress. I don't think that the cancer is back, though. I "feel" like the lung effusion is resolving on its own...The CT will give me a better idea. Cindi Quote Link to comment Share on other sites More sharing options...
draiocht_bean_si Posted October 8, 2004 Share Posted October 8, 2004 Cindi, I think it was May when I went to ER for abdominal pain 'etiology unknown'. They did a x-ray and CT scan - showed pleural effusion in lower left lung. Tumor is in upper right lung. Later my radiation onc said it was normal following rad. therapy - which ended in late February. I've had other tests since but no report of effusion. I wish you the best. I think I will spend my weekend praying and working on other healing stuff. %& Artist formerly known as Cat Quote Link to comment Share on other sites More sharing options...
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