tmaizeinlv Posted August 7, 2003 Share Posted August 7, 2003 I am leaving for Omaha tomorrow to be with my mother on Friday morning when she gets her scan. She's had 2 rounds of chemo and 15 days of whole brain radiation (NSCLC, Stage IV, mets to brain, lymph, and possibly adrenal gland). I am asking for a couple of things. First, prayers. Second, questions for me to ask the doctor. Here's the situaiton: The radiologist told her that the adrenal gland "tumor" may be a kidney cyst (I have one and it was first misdiagnosed as an adrenal gland tumor) and one of the brain mets may not be a brain tumor or cancer. She is being fed via IV because she has no appetite (she's on Metace, but still can't/won't eat). She is starting to get muscle atrophy and some numbness in her right hand and toes from the chemo. She is extremely depressed and seems to have little will to live, despite the fact that the chemo seems to be working (tennis ball sized lymph tumor can no longer be felt). I have questions regarding all of the above, as well as re-staging and prognosis (she was originally diagnosed as Stage IV small cell and the doctor gave a horrible prognosis; she hasn't been re-staged and updated since that time). Any ideas of things to ask the doctor when I see him Friday would be greatly welcomed. Thanks in advance. Prayers to all of you, Terre Quote Link to comment Share on other sites More sharing options...
pritchie Posted August 7, 2003 Share Posted August 7, 2003 Terre, Sending prayer for your Mom and you. Have a safe trip and hope everything goes well. Pamela Quote Link to comment Share on other sites More sharing options...
JonathanS Posted August 7, 2003 Share Posted August 7, 2003 you may want to ask about a new drug called CPT-11 for lung cancer -- veen if she canot have it now ask about the future..... Quote Link to comment Share on other sites More sharing options...
tmaizeinlv Posted August 7, 2003 Author Share Posted August 7, 2003 Thanks so much! Quote Link to comment Share on other sites More sharing options...
Terrie Posted August 7, 2003 Share Posted August 7, 2003 Terre- Will keep your mom in my prayers this weekend. I am sorry I don't have an questions for you, just wanted you to know I am praying always- Terrie Quote Link to comment Share on other sites More sharing options...
Don Wood Posted August 7, 2003 Share Posted August 7, 2003 Terre, my prayers are with you and your Mom. Don Quote Link to comment Share on other sites More sharing options...
JudyB Posted August 7, 2003 Share Posted August 7, 2003 Terrie, Has your mom had a PET scan? Cancer will "bloom" on a PET. Has she had CTs AND MRI's. Was her tumor biopsied? If she's Stage IV, then she has NSCLC and you need to ask what kind (squamous, adenocarcinoma, or large cell). If she's SCLC then she is either limited or extensive. Finally, is she being treated at a cancer center? If not, get her to one ASAP! Your mom needs to know that she has a chance of surviving, giving her the will to fight. There is no LC that is 100% fatal! Tell her to expect to be in the survivors' group. JudyB Quote Link to comment Share on other sites More sharing options...
christymike Posted August 8, 2003 Share Posted August 8, 2003 Since I live in omaha you should have me talk to her or my dad for that matter. My dad was the same way.. they thought he had tumors but after the scans found out that they werent cancer. My dad didnt eat for sometime during the chemo for days or more and he had to have and IV and get redhydrated. Then things improve. they really do and you and your mom have to believe that. Inspire her! Dont ever give up hope. It really helped my dad to tell him about this site and the encouraging stories. And now I love encouraging others because there is hope. Christy Quote Link to comment Share on other sites More sharing options...
tmaizeinlv Posted August 9, 2003 Author Share Posted August 9, 2003 Thanks for the replies and the questions to ask. She is at a cancer center here in Omaha, and Christy, I'd love for her to talk to your dad. Right now, she refuses to talk to anyone, read the computer, etc. But you never know. Email me at tmaizeinlv@yahoo.com if you wish. She has NSCLC, don't know which kind, but I'll find out on Monday. I asked for a PET scan and they said no; when I asked why, the doc asked who I thought the doctor was. Here's my good news/bad news update (with some ranting and raving,,,not for the faint-hearted to read). I was quite disgusted on Friday. We met with the doctor and he said, "oh, I don't have results and I'm on vacation next week." I was one p--'d of puppy! After reading him the riot act, we were allowed to call the doc back at 4:30 and he had forgotten to tell anyone that we were going to call. Finally, after 15 minutes on hold, his nurse gave us so-so news. The good news is that it hasn't spread or grown. However, the carbo/taxol has caused really bad side effects and none of her tumors are reduced in size. However, they have now decided that she has no cancer below the wasit; at first, they said she had adrenal gland and hip tumors. Then the radiologist said no, now they all say no. So that's good news. The bad news is that she still won't eat. She's also terribly depressed, withdrawn, embarassed, feeling like she's ugly, and ashamed that she's "putting all of us through this." The good news is that she's supposed to get Zoloft (although the doc forgot to call in the prescription, so now we wait until Monday) and she's got an appt. with a counselor next week. She went to counseling 2 weeks ago, and decided to go back (that's great news). The other good news is that, after much prodding, the doc finally agreed to let her have physical therapy. She just sits all day, refuses to eat, refuses to talk, refuses to walk. The doctor said that all the physical therapist will do is make her walk, and she could do that on her own. I said, "yes, but she won't. So, maybe we need to have someone make her walk." He argued, but finally agreed. Her appointment is Monday. She told me today that she hasn't had a bowel movement for over a week. Did she mention this to the doctor? Of course not! I know I sound harsh here; I'm not really,,,,just very frustrated because she won't do anything to help herself. She's just sitting there, waiting to die. And it makes me mad as heck! Not at her, per se, just in general. More good/bad news. Bad news: since she's not tolerating the carbo/taxol, doctor says we now give her some time off and then switch to a milder chemo to make her comfortable for the "6 to 12 months that she may have left; let's let her have some quality of life." He still says control/remission are out of the question and that there is no hope. We're just waiting for it to pop up someplace else and claim her life. Good news: I got her and my dad to agree to going to MD Anderson for a consult. At least, we're going to send the records and see if they are willing to see if there is more they can do for her. And if they say yes, then she'll go for a consult. She hasn't agreed to be treated there, but has agreed to an evaluation. This is a HUGE step. I think if nothing else, maybe Anderson can give her some hope. Because her doctor doesn't believe in "false hope" and is into this mind-set of "quality of life while we can, but it's just a matter of time before it comes back and she goes." I think his attitude sucks! He may be technically competent, but....I hate his attitude. I feel like he's written her off, and I don't think it's time for that. Because we DO have some good news. No change can be good, in my estimation. Granted, it makes it good news, not fantastic great news, but still good. At this point, we're (my dad, significant other, grandmother and I) hanging onto the good news (it hasn't spread or grown, nothing below the waist AND she's going to consult with MD Anderson), and trying to ignore the bad news. She is, however, focusing only on the bad news and the "6 to 12 months" that the doctor told her. Any ideas are welcome; any things you did to turn your loved one around. I'm praying MD Anderson will see her and that this will be the thing that gives us the miracle we need: for her to get her hope and faith back, because that is what will save her. Also, please don't think I'm without empathy for her. My goodness...I can't begin to imagine. In addition to having cancer and having the "hopeless" doctor, and generally feeling horrible (after not missing work due to illness since 1960..being sick is very foreign to her), she also has lost the feeling in her fingers and toes. She can't write or sign her name, can't open cards people send her. She also can't read any more. Her vision has suddenly gone bad. I don't know if this is a radiation or chemo side effect. She had brain mets (scan on 8/25, but I'm being positive here with the past-tense) and did 3 weeks of whole-head radiation. So, her face is burned, her hair is gone, and her mouth is horribly dry so it hurts to talk. Any ideas on getting rid of the taxol numbness and/or dry mouth? I feel so darn sorry for her and it hurts terribly to see her like this. But, I think I'm better off mad and frustrated than full of pity, ya know? She has a huge amount of pride and I think pity would only make her feel worse. Blessings and prayers to all of you. If you made it this far through my tiraide, thanks for "listening." I hope to be posting in "good news" soon. Terre Quote Link to comment Share on other sites More sharing options...
Don Wood Posted August 10, 2003 Share Posted August 10, 2003 Terre, your mom's doctor is a jerk. Is it too late to get another one? I;m glad you are getting a second opinion. Don Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted August 10, 2003 Share Posted August 10, 2003 I really don't like doctors like that. It sounds like you have made great progress with the physical therapy, the zoloft, the counseling, and the consult. I hope this will help turn things around. There is an artificial saliva you can get, but I'm not sure if it's perscription or over the counter. Be sure she's getting plenty of liquids and maybe try the carnation instant breakfast or other liquid food supplements. Tell her you're not giving up on her and she shouldn't either. She should seriously consider another doctor. Jenny Quote Link to comment Share on other sites More sharing options...
LindaMRG Posted August 10, 2003 Share Posted August 10, 2003 Hi Terre, I was turned off in the beginning of your post when you said the doctor said "who is the doctor here". I was so happy to read on that you have an appointment somewhere else! Keep us posted. Quote Link to comment Share on other sites More sharing options...
tmaizeinlv Posted August 10, 2003 Author Share Posted August 10, 2003 Thanks all. I appreciate it more than you can imagine. My dad thinks her doc is trying "reverse psychology"; i.e., try to rile her up and get her to fight by making her mad. But my dad agrees that it's not working with her. I emailed Anderson and will call them tomorrow and pester them. I told her today that I wished I could give her a pill or a shot of something to make her better. She said what she needed was a "shot of hope," because she has none left. I don't think she really wants to die, but she's afraid of living and feeling so awful. So, she's in limbo-land. She's also still in shock, I know. My folks' generation is "trust the doctor" 100%, no questions. So they get annoyed when I question him and when I question his attitude. Actually, that's not true. The get mad as hell at me! They're afraid that if we question him, he will give her substandard care. I told them that right there was a signal to change doctors! So, it's nice to have a reality check from you all. Because I have days when I think I'm losing it! Thank you from the bottom of my heart. Don...hope Lucie's pneumonia is better! Terre Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted August 10, 2003 Share Posted August 10, 2003 Terre, Your mom's doctor has the most condescending attitude I have ever heard. I am so glad you are going to MD Anderson for a consult. Also the Zoloft will help your mom. I'm sure she is not eating due to the whole brain radiation (my husband had this as well) but tell her things will improve. In fact if they are switching her chemo drugs she will have even more time to recover as they give her system a chance to rest before trying something new. The fact that the cancer has not spread anymore is wonderful news and there is certainly HOPE - just not with the oncologist you currently have. . . Thank goodness you are there to fight for your mom. She knows it too or she wouldn't have agreed to go for another opinion. Blessings to you and all your family, Peg Quote Link to comment Share on other sites More sharing options...
Guest Cheryl Schaefer Posted August 20, 2003 Share Posted August 20, 2003 My husband was diagnosed at home with Stage IV nsclc. They told him here no hope of surgery. Told Chemo was only option. He went for second opinion at MD Anderson. I truly believe they are the best. They redid all his tests and gave him a few of their own. At the end of the day, they restaged him IIIa and told him he was a candidate for surgery. I agree - your mother's doc sounds like you should seek a second opinion and I feel Anderson is the best. They will also tell you about Onc. in your area that might be trained by Anderson folks. Hang tough and tell your mom to do the same. Cheryl Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.