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Tami: I know my oncologist wanted to do an MRI when she felt the need to check for a bleed(s) from Avastin. I protested because of the expense and no insurance so she went with a CT. My guess is expense is probably the reason for the CTs at ERs so I'd go with the group and get an MRI. In the meantime, I know it must be really scary. It may help you relax a little to know that years ago before I went through allergy testing, I would get what they later called "migraine intensive" sinus/allergy headaches that would cause me to vomit. When they got more frequent is when I finally went for treatment. It hasn't happened again now for years. Take notice if this occurs when you are in a particular environment or after you have a particular food or drink. Good luck and hope you get back into follow-ups. Judy in Key West

Connie: What you quoted is it. I copied the link from the address bar again. Will paste it here in case I made a mistake the first time. http://www.canceranswers.com/Unknown.Cancer.html Thanks for the heads up. Judy in Key West

Right now this info may only apply to me as one of 5% to 10% of cancer patients in whom no tumor is found. But just in case someone with a similar story (Val has disappeared) stumbles onto the site, I want to share this. I followed a link on staging KatieB posted and found reference to Occult Cancer that sounded like mine. I'd never heard the term so I googled the word and found new (to me) information that answered a lot of questions I had about my cancer. After reading the article at www.canceranswers.com/Uknown.Cancer.html, I'm not positive I have a true Occult Cancer but it gives an understandable explanation of how/why a cancer can be found in a location other than the primary origin and several explanations for why a primary tumor is not found and may never be found. I am cursed with a profound need for things to make sense and I hope this info is legit because in light of what I've been told about my cancer--it now makes sense!

Faith: I got a group hug I requested and went looking for a place to pass it on and found you. What can I say that hasn't been said except I too believe in signs. That belief comes from my experiences as I know it does for you and you family. Hang on to it and stay as strong as you are able for the kids. If you cry, it's not a bad thing for them to see. My deepest condolences, Judy in Key West

Jen: I'm too new to give anything but a shorthand response but I'm here so here goes. Stage II is, as I recall, an early stage cancer which is a good thing. It's usually followed by a letter like a or b. You can google for staging if you want. I did but always have to go back because it's a little complicated. NSCLC as I've been told is usually a more contained, slower growing cancer than SCLC--another good thing. The 1/4 or 1/2 probably refers to how much of the lung was removed in the lobectomy (??the right word??)--another good thing since some peoples' profiles refer to a whole lung being removed. As for the "50/50" and "4%" I don't have a clue. As far as I know to chemo or not to chemo isn't related to the cancer being NSCLC or SCLC. Hopefully someone with more experience on the subject will respond but, in the meantime, I think your friend is not in a really bad situation if you can say that about any kind of cancer. Judy in Key West

Patti: Thanks for the good wishes. Lisinopril didn't work for me either. The new med together with two of the old is working--131/72! Haven't seen those numbers in awhile. That's why I'm going to depend on the Tylenol to take the edge off the headaches until I go to Orlando on Monday. The headaches now are obviously from the new med as headaches are listed as a side effect. For once I'm looking forward to going to Orlando. I'll see my oncologist who I only see every six weeks now. And I get my first follow-up CT/PET since dx. Hope it's good because I'm really excited about it--that's how good a feeling I have. Guess "scared" is under there somewhere. Judy in Key West

Did I say any of this on the site before? I don't even know. After bragging about how great I felt Easter Sunday, I became aware of what starts as the hints of headaches again. I went to the doctor on Thursday with a bp of 200-something over 118 and got new meds. By Friday evening I confirmed my blood pressure was down significantly and suspiciously the headache got worse after my evening dose. This morning I got out the paperwork that came with my Amlodipine 5mg. Didn't even have to read the fine print. On a short list on the front under "Your Medication: was "May cause headache. Consult Dr if severe." I don't even know what "severe" is anymore. I'm recalling how paranoid I was about having my lungs checked every time a nurse got near me because of how I wound up an emergency with a white out of the left lung before I was diagnosed. I said to my onc that I was afraid because I was to stupid to know it was happening the first time. She said I wasn't stupid. It was just that I was so healthy! Well, I don't feel healthy now and still don't trust myself to know what's going on. Sometimes I think, I can handle this (the headache) and others I feel like a vise is squeezing my temples. Can't wait til Tuesday when I go to MDACC and talk to my onc about what's going on. Judy in Key West

Hi Gail, hope things went o.k. for you and Hank at the doctor's visit today. And the rest of you respondents, thanks for giving me lots of reasons for not having asked for a prognosis besides the fact that I'm a coward. I read some statement relative to my cancer stage that included the number five twice and figured I didn't want to know. Gail, hope you didn't ask and they didn't tell. Doesn't do anybody any good cause they're only guessing anyway. Judy in Key West

Sandra: Oops, I went looking for you at the end and you were the first response. Sorry about that. Yes, it is hard to change old habits. I remember going to the doctor twice in a couple of months after my annual checkup. I had started six years or so to do them religiously. Guess I thought along with eating better and exercising, they would keep me healthy. Anyway, after my second visit I remarked to me doc that he wasn't used to seeing me between annual checkups. He sure does see me now, and his associates too when he's not available. I am all about lessons and I've identified more than one in this experience. Thanks for your kind words and good wishes. They are much appreciated. Judy in Key West

This is no time to be timid or to worry that someone may think you're a bother....sometimes I respond better to a swift kick than a hug. Kasey Kasey: Not sure if I'm doing this correctly but am trying to take a page out of Barbara's book and respond to each of you kind women individually. I had to laugh at the thought of me being timid. I can mix it up with the best of them--my PCP on occasion included. The not wanting to bother people though, you hit that one right on. And yes, sometimes I do respond better to a swift kick so thanks for that and the hug. Notice I didn't say anything about arguing with my doc this time though. My daughter laughed when I told her what he said and noted that my family can all tell me what I should do but this time Dr G tells me and that's it. He knows me long enough I guess to also know when I need a swift kick. I think underneath all this is that fantasy that I'm all better now and don't need the maintenance! Thanks for caring, Judy in Key West PS I'm not forgetting that your wait for your follow-up is coming soon--somewhere on or around April 9?

Ever since I was dx'd, I've tried to concentrate on the lessons I need to learn in this process. One is to be more forthcoming with the physicians who are treating me. I'm going to paste my post to Dr West this morning to solidify my intent: To Dr West: Well, my attempts to try to rationalize not going on Avastin maintenance seem to fail me every time. Yesterday I called and made an appointment at my PCP'office and my regular doctor was in. He's in and out of town and has new docs covering his practice now. I've seen one of them a few times and like him but he's not my regular doctor. My bp was 200-something over 118. I asked him to keep me from stroking out until I went to MDACC on Tuesday so I could talk to my onc about not doing the Avastin maintenance. He looked right at me and said "I'll take care of your bp and you stay on the treatment." He said I look good and am holding my weight so it's doing something. I don't know if I'm sure what's doing what but I trust him. If Dr T backs him up, oh well, I'm with them. The new bp routine is Micardis 80mg, Metoprolol 100mg and Amlodipine 5 mg twice a day. It's working so far to bring it down but the real test will be 8 to 10 days after the next infusion. If it doesn't, he reminded me to call him on his personal cell like he told me to do before. I'm not doing a very good job on the lesson I need to learn about not wanting to bother people. Dr T's PA already admonished me for not reporting side effects to them. She said MDACC is very aggressive in treating side effects. Dr West, you've been "it" because of the distance the internet offers that makes it easier for me to reach out. But be assured I'm working on that problem and hopefully will start letting my PCP and Onc in on what's going on with me. Judy in Key West

Patti: I don't know where you are getting your treatment but at MDACC and I'm sure some of the other big centers, they have people whose jobs are to get you these approvals! I had already found the program for Avastin before I realized MDACC was already working on it for me. I was really glad because the forms I found on line were for the doctor. I was going to download it, fill out all the info I could and then give it to the doctor requesting they complete her part. Didn't have to do it but if I were at a place that didn't do it for me, guess that's how I'd go about it. I also learned that the replacement program that covers the cost of the drugs only applies when there is not a generic drug for the trade named pharmaceutical. Judy in Key West

I like Hershey kisses and all Hershey and whoevers chocolate! Special dark is my favorite but no, had no idea there were so many varieties. Judy in Key West

PattiB: Thanks for the link to Tarceva assistance. I'm not getting it yet either but am looking down the line. I don't think I'm going to be able to stay on the Avastin maintenance because my blood pressure is still rising after about nine days following the infusion. My guess is that as it builds up in my system, it will only get worse.I already get assistance with Avastin and was thrilled to see Tarceva is also a Genetech product. Judy in Key West

Linda: Like Gail said, the first few weeks are the most difficult. Once you get a diagnosis (and it could be something much more benign than cancer) and a plan laid out if it is something to be treated, you settle in a little better. That's not to say most of us haven't done the roller coaster a few times. But you don't have enough information yet, so take some deep breaths, plunge in with your mom and let us all know how it turns out. Judy in Key West.

Leslie: Sounds like that repetitive loop is a natural response, your mind trying to take it in, to make it real. If you have a history of being in touch with your feelings, I wouldn't worry about hurrying things. This event is apparently just to big for you to take in all at once. All in good time. Bless you and find comfort wherever you are able. Judy in Key West

The doctor gave me a script for Nystatin for my throat even though they couldn't see the evidence of thrush. Whether it was thrush or not, it really helped take the edge off the pain. If I had any discomfort between prescribed times for the Nystatin, I used over-the-counter Prevention. I mixed the green label (for viruses) with the orange label (for bacteria). I used the Preventions for mouth sores too. Good luck. Judy in Key West

Randy: Thanks for the info on RNA. I've copied and pasted that part of your post to my Cancer folder in my Notepad so I can follow it. Anything like this is so important to people with lung cancer and particularly with those of us with the "not cureable but manageable" label. Thanks again from Judy in Key West

Barbara: Thanks for the info on Fosamax. I have been taking it for awhile now. I took a break from it for a short time while I was being diagnosed and taking my six combo chemos. It was all I could handle in the morning without doing the Fosamax and staying in an upright position with no eating or drinking anything for a half hour. This will make me keep an eye out since I'm back on it. I'm curious though, wouldn't all the xrays and scans we cancer patients get show something starting if the technicians or doctors are aware of the problem? Judy in Key West

omg, what a sweetie. Judy in Key West

Barbara: I have to tell you, you have brought an energy and warmth to the site that is so positive I'm sure for so many of us. Thanks. Judy in Key West

No, I don't have any test results to report. Actually I don't have anything medically to report except I feel pretty darn good after feeling so bad the last few months. I have had good friends visiting from out of town and have really able to enjoy them. I want to wish everyone a Happy Easter and a recovery like I'm having right now. I don't know how long it will last but I am just grateful for today. Judy in Key West

Looks like I posted to Barbara on the wrong board. I told her she had red alerts out for her on the other site because she'd gone missing. Sound like they're emptying out into LCSC. Welcome Janet. Judy in Key West

Barbara: I have to ask. Are you Barbara as Barbara Ellen and Bill on the Inspire website? If so girl they have all kinds of red alerts out for you because you've gone missing! I go in and out of it now and then but I really don't like the setup. Judy in Key West