jaminkw Posted February 2, 2008 Share Posted February 2, 2008 I hate calling my doctor's office unless I really have to so I didn't call back and question (my questions these days are always delayed reactions) why they were moving my Feb CT/PET to the end of March. I learned the good news when I went for this last infusion on Jan 29. It is because my previously "stable" scans turned to "improved" with the CT WET done on Jan 8. I have always counted on my husband to hear everything at meetings with the doc but this time he spaced too! I heard "improved" and "your lungs look great" and something about the pleural thickening. I don't have a clue but my husband thinks she said something like it cleaned itself up nicely. Whatever, I'm happy with one more chemo cocktail on Feb 19, an Avastin three weeks later and the CT/PET that will probably tell us more about the intervals and length of the Avastin maintenance? I'm really still on the fence about this chemo--I know I probably need it to control the cancer but my husband and I are both scared about how much of it the body can take before it starts having a negative effect. I know a lot of you have been doing chemo for a long time relative to my short three months but it's still scary to me. Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 2, 2008 Share Posted February 2, 2008 TAPE RECORDER! Yes, you can take tape recorders to your doctor's office and the reason you can do that is because of what you just explained here. I use to take a recorder all the time, because my hubby and I never heard the same things coming out of my doctor's mouth! They work like a charm and then you don't have to sit and second guess what was said and what wasn't. OR, have a third person come with you and take notes. Doc's totally understand. Also, could you please take a couple of minutes and please fill out your (MY PROFILE) at the top of the page. Just click on MY PROFILE and fill out the info regarding your diagnoses, what kind of cancer you have, what stage, treatments you have, etc., etc., etc., Just look over my profile or others and you'll see what to type up. We ask members to do this because most of us members don't remember what kind of lc or treatments everyone has been through, and it's so much easier for all of us to help you if you give us as much info as possible. Then we don't have to go back and look over all your old messages. THANKS for doing this! If you have questions or problems doing this, feel free to ask any of us. We're here to help! I went back and read some of your old posts, and do they have a name for the kind of cancer you have? Or do they call it a White Out Lung? Did Dr. West say this is a rare disease or type of lung cancer? I had a friend years back that had mediastinum cancer (area of the chest behind the breastbone) but they didn't really call it lung cancer. They called it Mediastinum Cancer. Although she did have tumors on her chest wall. Very interesting! (UPDATE THIS PART OF MY MESSAGE) WOW, I just went and Googled (Lung White Out/White out of Lung) Wow, very interesting. Not much info on it. (Bummer) Good luck to you! Quote Link to comment Share on other sites More sharing options...
Patti B Posted February 2, 2008 Share Posted February 2, 2008 First - I agree with Connie - bring a tape recorder or another person to write down what the doctor said. And never feel funny about calling him back and asking for clarification about anything - remember - you are paying him for this. I have been on chemo now for 15 months - first was 6 cycles of Carbo/Taxol/Avastin, then 7 months on Avastin alone and now for the last couple of months I have been on Alimta. I have to say (and knock on wood)I have always felt fairly good. The Alimta makes me SOB and fatigued, but other than that, my old body is holding up pretty well. If you are worried about Avastin maintenance, let me tell you Avastin is a walk in the park compared to many other chemos!! Wish you luck and please keep us updated on your progress!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted February 2, 2008 Author Share Posted February 2, 2008 About the profile....When I first came on the site it was just too soon for me to rehash the steps to my dx. Then when I decided I was ready, I didn't follow Ned's advice about Control N and got a good way into it and lost the whole thing. I promise I will try to do it again. In short in the meantime, according to Dr West at onctalk, I have a cancerous chest disease that is lumped in with NSCLC. He feels that in a couple of years they will be differentiated. No there is not a great deal about the white-out of the lung which is really called a pleural effusion. It singals what is considered advanced (IIIB) NSCLC and is usually thrown by a dense mass or tumor. They can't find one. Dr West said that they do sometimes find pleural effusions without finding a dense mass but, again, I find that's not so common either. I certainly take no pleasure in being unique in the case of cancer. It makes it really hard to benefit from other's experience. Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 2, 2008 Share Posted February 2, 2008 "jaminkw"] I certainly take no pleasure in being unique in the case of cancer. It makes it really hard to benefit from other's experience. I'll bet you don't and rightfully so! BUMMER! Hang in there! It really would be hard to benefit from others, it's sorry like lung cancer and yet?????????? FRUSTRATING I'm sure! Well, maybe SOMEONE will be able to relate or share something that will benefit your situation. Never give up HOPE! Quote Link to comment Share on other sites More sharing options...
Joe B Posted February 2, 2008 Share Posted February 2, 2008 I am so glad to hear you are having positive results. Make sure you get copies of the radiology reports, in time you will be able to read them and infer how you are doing. It sounds very positive. Congrats !! Joe B Quote Link to comment Share on other sites More sharing options...
recce101 Posted February 2, 2008 Share Posted February 2, 2008 "jaminkw" ...I'm really still on the fence about this chemo--I know I probably need it to control the cancer but my husband and I are both scared about how much of it the body can take before it starts having a negative effect. A valid concern. Life is a series of trade-offs from start to finish, and that's magnified by cancer. But I think you've made good choices so far, and it's time to go back to the subject you assigned to this topic thread and say CONGRATULATIONS!! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Maryanne Posted February 3, 2008 Share Posted February 3, 2008 so far so good and that what counts. Just want you to know that Iam thinking of you. Maryanne Quote Link to comment Share on other sites More sharing options...
jaminkw Posted February 3, 2008 Author Share Posted February 3, 2008 Thanks to all who responded. I'm sure it helped me drag myself off the couch and make myself get ready and go out (ladies, in spite of the fact that I couldn't get eyelashes on to save my life!) with my hubby for my birthday dinner. I took an anti-naseau pill and hour early and dinner was awesome. Thanks for being there. Judy in Key West Quote Link to comment Share on other sites More sharing options...
jaminkw Posted February 3, 2008 Author Share Posted February 3, 2008 KatieB: I almost missed your post because we were posting one minute apart. I loved the little happy dance. You know we people in Key West looovveee chickens. Judy Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted February 9, 2008 Share Posted February 9, 2008 Glad things are going in the right direction for you. Quote Link to comment Share on other sites More sharing options...
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