Claudibird Posted January 9, 2009 Share Posted January 9, 2009 My 58 year old mother was diagnosed on Sat Jan 3, 2009 with NSC LC that has spread to the brain. She has 5 lesions total on her brain, with one on her brain stem. She has many neurological symptoms, as would be expected. She started steroids, and has received 2 of her scheduled 14 whole brain radiation txs. The steroids have helped with her confusion and headaches, and I am hopeful that the radiation will also. The Dr doesn't want to give us any type of time frame, and I guess that she really can't, although everything I've read appears to indicate months. Mom wants to have chemo as soon as the radiation is done, but I don't think she truly understands that this will not "cure" her. On top of that she has a pre-existing condition of several bad teeth (10) which the oncologist said should be removed prior to chemo. I'm not really sure what my question is, because my heart is so heavy with misery right now, that it is difficult to think straight. I guess I want to know other people's experiences and if they thought the chemo was a good decision for their loved ones and if it decreased their quality of life even though it extended it. If she has only a few months, should she be dealing with the pain of dental surgery, poss nausea/vomiting etc. or just be eating Snickers, and drinking Dr Peppers which she loves? I don't want to take hope away from her, but I can't bear the thought of her suffering any more than she already is. Quote Link to comment Share on other sites More sharing options...
Donna G Posted January 9, 2009 Share Posted January 9, 2009 So sorry to hear about your Mom. We understand. This is the most difficult time, we are overwhelmed with the diagnosis, all the tests, all the doctor visits, the problems we are having. I like most had to go to the dentist and get my teeth checked out to be sure there were no problems before chemo, so your Mom's situation is routine. I hope someone is going to the appointments with her and recording or taking notes, it is even hard just to hear and remember all that is said to us. I am glad her Dr. didn't set a time frame. She could respond to all this treatment and enjoy years of quality life. It is way too early to know. She is young. Keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
Nick C Posted January 9, 2009 Share Posted January 9, 2009 Claudibird, Please see my mom's story in my signature. This is by no means "how things go". In the two and a half years I've been here I am confident my mother's story is one of the absolute shortest and I don't think by anny means you should think that is the case for your mom. It is not "the typical". However, my mother's decision making is detailed below and I think that for what you are telling us, there is a real true "quality" consideration to be made. Please feel free to contact me if you have any specific questions. Quote Link to comment Share on other sites More sharing options...
SandraL Posted January 9, 2009 Share Posted January 9, 2009 Hi there and I am so sorry to read about your mom and your need to be here. The beginning is so tough. Just take it one day at a time and see how she does before any decisions are made regarding chemo. There is always hope. Please keep us posted on how your mom is doing and I am sending my prayers for the best. Sandra Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 9, 2009 Share Posted January 9, 2009 Hi, welcome to the group. Having mets to the brain sounds bad, but can often be treated quite effectively. Recovery from the WBR and tapering off from the steroids will take some time, but once that's done there's a good chance she won't have any further problems there. Aside from the neurological symptoms (headache, confusion), how is your mom feeling? If she's had a PET scan (or at least a bone scan) and there's no evidence of mets anywhere else, that's encouraging. Her lung tumor(s) may respond well to chemo, and you may be pleasantly surprised how well she tolerates it. Because of the "pre-meds" that are now routinely given before each chemo session, supplemented with take-home medications, nausea is not nearly as common as it once was. Chemo is no fun, and practically everyone experiences fatigue to some degree, but many people sail through those months without being seriously debilitated, bedbound, or unable to do productive things every day. Please don't get hung up over the curable/incurable issue. The word "cure" has a specific meaning in cancer: no evidence of disease for 5 consecutive years. While stages IV and IIIb are currently considered incurable, it's becoming possible to treat these conditions on a long-term basis, similar to other chronic conditions that many of us have. You can get some perspective from the profiles that appear at the bottom of most of our messages, as well as the posts in the My Story and LC Survivors forums. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Claudibird Posted January 10, 2009 Author Share Posted January 10, 2009 Oh my gosh, finding this website has been a Godsend. I so appreciate everyone's advice and encouragement. I am going to concentrate on hope instead of gloom from now on. My mom was released from the hospital this afternoon, and is going to be staying with my family and me until her Radiation TXs are complete as she and my Dad live in a small town an hour away from the cancer center. I had been staying overnight with her in the hospital, so we are both looking forward to sleeping in a real bed tonight! I have made the appt to have her teeth removed on Friday because she has told me emphatically that she wants to do the chemo. I think some of my friends and family are tired of talking about the whole cancer thing, and so I have tried to limit sharing all my feelings with some. However, I feel like I will break into a million pieces if I don't let it out, and I want to be strong for my mom. She is so afraid, I've never seen her so frail and vulnerable before. I thank all of you for letting me share my worst nightmare with you. Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 10, 2009 Share Posted January 10, 2009 I think some of my friends and family are tired of talking about the whole cancer thing, and so I have tried to limit sharing all my feelings with some. We know exactly what you mean. Friends and family often just don't "get it" — and really, we can't always expect them to. Some of them probably have issues that you and I don't understand, because we haven't walked in their shoes, and neither have they walked in ours. Here you can celebrate, grieve, question, vent, even laugh, and you will never be hassled, patronized, or ignored. Then sooner than you think, you'll be able to offer support to an even newer member, and you'll both be strengthened as a result. I hope you all have a restful night. Ned Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted January 10, 2009 Share Posted January 10, 2009 Claudibird, we are all about hope here. I am so glad to hear that your mom is ready to fight. Please, continue to come here and let out your fears and frustrations, so you can be strong for your mom. We will listen and we will understand. Lynn Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted January 11, 2009 Share Posted January 11, 2009 Claudibird-- Hi and welcome, I'm glad you found us. Rich Quote Link to comment Share on other sites More sharing options...
mjb Posted January 13, 2009 Share Posted January 13, 2009 There is a tendency for doctors and people in general to automatically equate brain lesions or tumors with "the end is near". Look at my husband's profile - he had 5 or 6 lesions show up back in 2004 not long after he was diagnosed. He had whole brain radiation, gamma ray and two brain surgeries - the last one almost three years ago. No more tumors at this point and his oncologist has said he is in remission. I definitely think it's worth trying. He said the radiation was not near as bad as chemo - just made him bone tired. Hang in there. It's not over until God says it's over. Quote Link to comment Share on other sites More sharing options...
Claudibird Posted January 19, 2009 Author Share Posted January 19, 2009 Mom had gotten so much stronger after 7 days of WBR...in and out of bed by herself, could fix herself something to eat, check her blood sugar, etc. However, on Thursday they lowered her steroids from every 6 hrs to 3 times a day, to just twice a day on Saturday. She fell on Sat, and is weaker now than when we first took her to the ER. Has no balance, can't get up and down from chair, toilet, etc. without assistance. Has difficulty even feeding herself. Did anyone have this kind of problem when weaning of their steroids, or is this something more ominous? Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 19, 2009 Share Posted January 19, 2009 Hello Claudibird and welcome I would most definitely call the doctor regarding these new symptoms ASAP. Please keep us posted.. Warmly Christine Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 19, 2009 Share Posted January 19, 2009 Did anyone have this kind of problem when weaning of their steroids...? I know from reading here and in other forums that many patients have that problem coming off steroids. The typical solution is to increase the dose, then taper off more slowly. Some find they need to continue on a low dose indefinitely. Yes, call the doctor. Ned Quote Link to comment Share on other sites More sharing options...
Claudibird Posted January 19, 2009 Author Share Posted January 19, 2009 Thank you for your advice, went to the Dr this afternoon, and he says we should definitely increase her steroids back up to 3 x a day, and wean her much more slowly. Hopefully she will return to the strength she had last week soon. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 19, 2009 Share Posted January 19, 2009 I'm so glad you got the doctor involved. Hoping that her strength and stamina will improve soon! Thanks so much for the update! Please keep us posted... Warmly Christine Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 20, 2009 Share Posted January 20, 2009 So glad you found us. Ned is right on with his responses. Not much more I can say except feel the hope in his and others words here. And as mbj said There is a tendency for doctors and people in general to automatically equate brain lesions or tumors with "the end is near". I know I felt that way before I started reading on this site about brain mets so often treated successfully . When I read your first post that said your mom wanted to do chemo, it told me she is a fighter. She wants to live. Just get behind her, let her make the decisions and be her support. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Claudibird Posted January 21, 2009 Author Share Posted January 21, 2009 Mom is worse, went back to Dr. Steroids increased to 4mg 4 x a day. Dr says Mom's condition is ominous, wouldn't reccomend chemo at this point. We were going to start her chemo Tuesday, since her last WBR is Monday. She said she wants to see if we can get her better with steroids, and re-evaluate next week. I tried to talk to Mom about what she was feeling, thoughts about dying, etc. She hasn't talked about any of this since her diagnosis....I don't know if she's trying to protect me, or just doesn't want to talk about it. All she said was "I don't think I'm doing very good". I don't know what to do, it's hard to find the right balance between being positive and hopeful around her and giving her the opportunity to express her fears or help her with anything she wants to do or say if her time is limited. All this is complicated by the fact that she isn't always lucid, and that I am devastated seeing her like this, and exhausted from taking care of her 24 hrs a day. I don't really have a question, I just needed to let some of this out. Thank you to all of you, I am so grateful I found you here. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 21, 2009 Share Posted January 21, 2009 ((((Claudibird)))) I don't have any answers or advice, but am sending you tons of positive thoughts, hugs and prayers. Keep posting and vent all you want and need to. We are here and we get it. Hugs Christine Quote Link to comment Share on other sites More sharing options...
Claudibird Posted January 30, 2009 Author Share Posted January 30, 2009 Saw the Dr again today, she is concerned that we may not be able to take care of mom at home much longer. Talks to mom about in patient hospice, mom begins to cry....first time since all this started. It is painful to see her cry, but I'm almost glad that she is able to release some of her fear and sadness. The Dr has offered her the possiblity of Gemzar (sp?) by itself because she thinks that is all she will be able to tolerate, as she is becoming weaker every day. mom wants to try this, she said " I just can't imagine walking away without even trying to fight." My dad and I have told her that we will stand by her and support her in any decision she makes. Right now we are trying to figure out how we can get her back home with Dad, as she has been living with me since she was discharged from the hospital. I took a leave of absence from my job as an RN in Pedatric ICU, to care for her, (she requires total assistance with eating, tranferring from wheelchair to chair, bathrrom and bathing) but my family can no longer make it without my paycheck, and I must return to work soon. I'm going to try to find someone to stay with her 8-5 a few days a week, and since I work three 12 hr shifts a week, I will drive to their town (only about 45 min away) after I take my girls to school on my days off. So, that's our latest update, I apprieciate all of you and your prayers. Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted January 30, 2009 Share Posted January 30, 2009 Hi Claudibird. I'm so sorry to read of your mother's situation. I think the drug companies and the oncologists have spread this (lucrative-for-them) notion that 'fighting' means to fill ourselves with the poisonous substances called 'chemotherapy' until we die. Perhaps someone could tell her that feeling as well as she possibly can and having as much pleasure as she possibly can in this chapter of her life can *also* be seen as 'fighting' and she wouldn't be letting herself or anyone else down. Just my two cents. Hang in there. Ellen Quote Link to comment Share on other sites More sharing options...
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