beckyg Posted February 16, 2004 Share Posted February 16, 2004 The PET results finally came in. I still don't know what is causing the pain in my ribs. He said that there is uptake in my right lung where the primary tumor is and there is uptake in the area that hurts, but it is not clear whether it is the ribs or the pleura that is lighting up. He said the pain could be caused by the tumor pressing on nerves. I am nervous enough about radiation causing me even more trouble that I declined to have radiation done anywhere near my lung unless they feel some confidence it will help. So for now I am still just sticking with drugs. The other news from the PET is also a little mysterious, but seems good. The two nodules from my left lung that showed up on my last CT did not light up. The onc. says that could be because they are benign; they could be particularly slow-growing; or it could be that this chemo regimen is working and has already resolved them. I like choice c best. I am scheduled for another x-ray in a couple of weeks--we'll see what it shows about them, but I am feeling optimistic. I had my second dose of chemo on Thrusday, and I slept most of the weekend, but so far I have managed to make it to work every day and to get all my important things done. (Slower than I used to do them, but I am still effective.) That is really important to my mental well-being--that I feel every day like I got something important (at least important to me) accomplished.l Becky Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 16, 2004 Share Posted February 16, 2004 Sounds good. Hang in there, Becky. You're a real trooper! Don Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted February 16, 2004 Share Posted February 16, 2004 Dear Beckyg, You gotta' believe and keep the faith! I will keep you in my thoughts and prayers. God bless us all, Sam'swifeShirley Quote Link to comment Share on other sites More sharing options...
Fay A. Posted February 16, 2004 Share Posted February 16, 2004 Beckyg, The PET results sound encouraging to me, too, so I'm following your lead and going with option C. You're another one of my heroes. Quote Link to comment Share on other sites More sharing options...
Andrea Posted February 16, 2004 Share Posted February 16, 2004 Becky, You are a true fighter and inspiration!!!!!!! Here's to choice C! Quote Link to comment Share on other sites More sharing options...
karen335 Posted February 16, 2004 Share Posted February 16, 2004 Becky, Here's to choice "C". Hang in there and thinking of you. You are such a strong spirit. God will continue to bless you with his healing... Remembering you in my prayers... Karen Quote Link to comment Share on other sites More sharing options...
Elaine Posted February 16, 2004 Share Posted February 16, 2004 You are truly an inspiration to me and many others. I think of you each day and have kept your husband and child in my prayers as well. Quote Link to comment Share on other sites More sharing options...
Nancy O. Posted February 16, 2004 Share Posted February 16, 2004 Okay Becky, another vote for option c from me. Sounds like some good news with mixed reviews. We'll take the good news. Love to you. Nancy Quote Link to comment Share on other sites More sharing options...
ginnyde Posted February 16, 2004 Share Posted February 16, 2004 Becky, I'm a look on the bright side person. This da** disease has enough bad news, so actually any of those options sounds like a real good reason to grab that Curtis of yours and go celebrate. Ginny Quote Link to comment Share on other sites More sharing options...
Tiny Posted February 16, 2004 Share Posted February 16, 2004 Becky- I admire your tenacity and spunkiness. I'm choosing "Door C" also. Blessings. Quote Link to comment Share on other sites More sharing options...
bobmc Posted February 17, 2004 Share Posted February 17, 2004 Hey Becky, Just wanted to join in here too!! Also going for door # 3; I'll tell ya sometimes, I'm really get a bit confused with these PET scans, Still hangin and waitin myself. God bless and be well! Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01 MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack PET taken 1/5 - hot spot in mediastinum May be cancer?? "Absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 17, 2004 Share Posted February 17, 2004 Dear Becky, Just wanted to add my support for door #3 as well. You have come so far and your such an inspration to all of us. Keep kicking this crud my dear. YOU CAN DO IT!!! I have a question. Would a bone scan tell if it's on or in the rib that is causing the pain? Could that be an option? X-ray may do the same thing. HOPE SO! Sending positive vibes. Quote Link to comment Share on other sites More sharing options...
rinksgal Posted February 17, 2004 Share Posted February 17, 2004 Becky. I'm wishing you good luck, keep us posted on what you find out. Prayers to you! Christy Quote Link to comment Share on other sites More sharing options...
beckyg Posted February 17, 2004 Author Share Posted February 17, 2004 Connie, I have already had a bone scan, a CT, and a rib x-ray, and nothing conclusive shows up on any of them. That's why the radiation doctor ordered the PET--he thought maybe it would show up there. So now the doctors are still scratching their heads about why I have this pain. At least the medication keeps it to a dull ache most of the time, but I would love to get rid of the side effects of the drugs! Becky Quote Link to comment Share on other sites More sharing options...
Snowflake Posted February 17, 2004 Share Posted February 17, 2004 Becky, Maybe you're just experiencing "phantom pain" like older people sometimes do. I know that after that 'little' surgery, my YOUNG body is so STIFF. Hard to explain, it doesn't HURT, it's just stiff and hard to move... Getting out of bed is the worst trial, moving gets easier during the day. (I visualize the Tin Man from The Wizard of Oz and his little oil can...squeek) I have rib pain in the back, pretty sure it's the area where the ribs were spread as the pain is localized on one side. Maybe you have arthritis (but then again, an X-ray would pick that up, too).... Here's hoping it's on its way out as the weather gets nice and the humidity level stabilizes.... Becky Quote Link to comment Share on other sites More sharing options...
Hebbie Posted February 17, 2004 Share Posted February 17, 2004 Give me a "C"...... Becky, With all those test done and nothing conclusively popping up, let's hope it's a whole lotta nothing going on in that rib area......I like Becky's idea above about the "phantom pain"......after surgery I had lots of pain going on in my chest/rib area, then it seemed to go away.....sometime in the middle of chemo it started to come back. I felt "stiff" in my lung area, like I had a box jammed in my side. Maybe it's just all those chemo drugs doing their thing in there! Hang in there -- I know you will get through this hurdle, you are one of the strongest ladies I have every had the pleasure of knowing! Heather Quote Link to comment Share on other sites More sharing options...
LindaMRG Posted February 17, 2004 Share Posted February 17, 2004 Becky, If you need radiation and are worried about side effects, ask about IMRT (intense modulate radiaition therapy); its precise and there are little to no side effects. Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 18, 2004 Share Posted February 18, 2004 HI Becky, Well, I tried to find the easy way out on your pain, but I'm sure glad to hear your doc's are leaving NO STONE UNCOVERED! With all the medical tech. that we have, you would think SOMETHING would show up and help the doc's find an answer. I always HOPE for the best! I'm sure the doc's are just as frustrated as you are. Oh..... sweetie, I sure wish there was something that could help you out TOO! With all the pain med's there are, maybe another one would work better for you. (gotta feeling you looked into that too)! ((((((((((BECKY))))))))) Well, you can bet if I hear of anything, you'll be the first to know!!! Hugs, Con Quote Link to comment Share on other sites More sharing options...
BeckyCW Posted February 18, 2004 Share Posted February 18, 2004 Yet another Becky here, voting for door #3!!! BeckyCW Quote Link to comment Share on other sites More sharing options...
beckyg Posted February 18, 2004 Author Share Posted February 18, 2004 Yesterday I saw the radiation oncologist (who ordered the PET scan.) Monday I got the report on the PET from my medical oncologist because he had it and i was tired of waiting for the other guy to get back to me. Anyway, the radiation guy told me the same things the medical onc told me, but he also had a CD with all the pictures on it from thr PET, so he spent 15 minutes or so showing the scans to me and answering questions. It appears on the PET that my right lung is totally blocked--no air whatsoever getting in. He said he would guess that the tumor and fluid in the top have closed off the bronchus on that side and caused the lower half of my lung to collapse. This would explain why my breathing has gotten so bad in the last 6 weeks, and he said it might even explain some of the pain--a partially collapsed lung can be painful. Of course, he didn't have any suggestions about what I can do about this problem. (They all seem to think that if I am able to get out of bed by myself and go to work and do the things I am doing, I am doing way better than they expect, so what am I doing complaining that I am not doing as well as I want to be doing.) So I guess my next step is to go back to the pulmonologist--he's the only one who wants to talk about actually improving my breathing. I still want to get to the RFA doctor in San Antonio for his opinion. Most of my other doctors have kind of pooh-poohed that idea. They say my tumor is too big, that I should let the chemo do its thing, etc. But I understand that RFA is supposed to be complementary with chemo and I am not wanting to quit chemo to put all my eggs in the RFA basket. And even if the tumor is too big for him to completely get rid of it, maybe he could blast enough of it away that I might be able to use my right lung again? The MD Anderson oncologist and my pulmonologist both told me in January, after looking at my December CT, that I had scarring in the bottom of my right lung, but not a lot, and they were baffled by why I was having so much trouble breathing. It didn't dawn on me at the time to question that, but my tumor is in the top of my right lung--why would there be scarring in the bottom--scarring should have come from the radiation, right? SO I asked the radiation oncologist yesterday and he just said, "I don't know what they mean by scarring." Grrr. I am so frustrated. It seems like the more questions I ask, the less I think I know about what is happening to me. I am just trying to hold on to those nodules in my left lung not lighting up on the PET. That has to be good news and then we'll keep plugging on the rest of this mess. Sorry for the novel. I am headed home early today for some rest. I have a friend here to pamper me this week and I haven't had much time to visit with her because of school. Becky Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted February 18, 2004 Share Posted February 18, 2004 Becky - about the tumors in your left left - I'm with you and voting for Plan C. Why not? Also the stuff going on in your right lung - it seems to me that the oncologists are mainly happy if you're alive or at least not on your death bed. they don't seem to care too much about any discomfort, and when Dave questions how he can make himself FEEL better the doctor seems to think that's not all that important - after all, he's alive. I'd keep on pushing and questioning. You deserve to feel better and to breathe better. Keep us posted - and yes, I think you are doing GREAT! Because you are a fighter! God Bless, Karen C. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted February 18, 2004 Share Posted February 18, 2004 Okay, I'm now as confused as you, Becky... So, scarring in the bottom of your right lung - you had pneumonia prior to diagnosis, too, didn't you? Could it be scarring from pneumonia that has been "hidden" prior to this last run? Collapsed lung for rib pain - do they intend on blowing it back up?? "Gee, this probably hurts, but we're not going to fix it..."??? Right lung blocked, not working?? Can't they figure that out with an oxygen saturation test through your FINGER?? What am I missing?? Enjoy your time with your friend, kick back, relax, focus on CLEAR left side nodules...and a possible answer to the pain. Hope they get the reading right soon and FIX you, for crying out loud! I believe you are still under warranty.... Becky Quote Link to comment Share on other sites More sharing options...
Tiny Posted February 18, 2004 Share Posted February 18, 2004 Becky- Thank goodness for dear friends. I hope you can take a mini-break from the cancer, and then come back into the fight with renewed vigor. Hoping for some resolution for you soon and that the RFA is a viable option. Take care. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted February 20, 2004 Share Posted February 20, 2004 Becky. I can certainly imagine how frustrated you must be. Will keep praying the nodules in the left lung stay as they are now. I don't understand why the pulmonologist isn't involved and running his tests. surely they can do something to re-inflate the lung. My right side is terribly sore now and air exhaled reduced from .76 to .51. Apparently have a "respatorybug" so on antibiotic and nebulizer with albuterol which is helping the breathing some. I will be praying that the doctors get their heads together and come up with a good solution. I drove myself 70 mi round trip for 31 radiation treatments and did fine. After they ended I lost all energy and was discoraged but my stamina and energy were improving until the bug came along. You and the docs are in my prayers. God Bless Quote Link to comment Share on other sites More sharing options...
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