Brandie721

Kelly, I know what you mean. I keep it to myself as well. As a result people think I am "over it." It has been a month today - so no I am NOT over it. People grieve in so many ways. Just because we choose to do it when no one is looking, doesn't as you say, mean we are not doing it. We just don't feel like causing a big scene. You don't need to defend yourself. I wish I could have been as strong as you and have spoken at my Mom's wake or funeral. I knew I wouldn't be able to without crying. I would have loved to. And I think you are amazingly strong for having accomplished that. People are proud of many things in life. That would be one of the big ones in my book. take care, Brandie

Hi there, Absolutely push for answers. If I learned anything in this whole thing, it is that you have to advocate constantly to get good care. In regards to eating, my mom like ensure and also ramen noodles (which have a ton of fat...I didn't know). The doctors said let her eat anything she feels like. She was also a fan of Egg McMuffins! Regarding hospice, I just faced this decision last month. I had always said I would take care of Mom at home but when things went quickly down hill and I needed the support of the Visiting Nurses (who would also provide hospice care), it wasn't there. Many hospitals do keep a set number of hospice patients. My Mom was able to be kept inpatient based on the fact that her level of care was too much for me to handle. Her care was wonderful and I am glad I did it. I was able to still sleep there with her, so it didn't limit our time together. Good luck with everything. Please let me know if there is anything else I can do. My Mom sounds so similar to yours. She had symptoms for years and between avoiding the doctor and seeing a bad one, it was all too late. Brandie

Kelly, That is the most perfect quote. thanks for sharing it. Brandie

On Saturday, May 19 I was married. On Sunday May 20, my Mom passed away. She never made it to my wedding - which was all for her and it was the one thing that kept her going. She never had a wedding (her and my dad eloped) and she had dreamed for so long of my wedding. She waited for us to go back to the hospital to tell her what happened the night before and then she passed away. It has been the most horrible two weeks of my life. What an awful thing to say when you've just gotten married, huh? My Mom went into the ER on mother's day (we had gotten her red sox tickets as a surprise because she had been wanting to go ever since she moved in with me in Boston - she never made it) and had a large accumulation of fluid around her heart. I was told if they didn't remove it, she would die that day and even if they did she'd not last more than a week. It went downhill so quickly at the end. The doctor had just told us we could FINALLY resume chemo and then she just stopped eating and drinking and grew weaker, incontinent and moaned and whimpered instead of sleeping. My Mom was unconcious the week before my wedding. We were left with the most horrible decision to have to make - go ahead with the wedding or cancel it. No one should ever have to make a decision like that. But my Mom held on for us. It was her wedding gift to me. It's been one week since she died. The pomp and circumstance of her funeral are over. I know the pain is just beginning. I miss her more than life itself.

Hi Missy - I can't even begin to imagine how you feel. The hurt must be so painful. During my Moms ups and downs she had a prolonged, severe period of paranoia. The docs prescribed Zyprexa and it has really helped. Might be an option for your Mom to try. Take care, Brandie

Hi there, Fluid intake is a constant battle with my Mom. She has been dehydrated several times and the side-effects are not nice. She has had low BP and also a UTI which caused major confusion. She pretty much drinks gatorade all the time now. The elctrolytes plus the sugar is a winning combo to me. But it is just getting her to drink enough of it. I also understand that ingesting caffinated products makes you actually have to compensate even more. Staying hydrated is so important. The watermelon sounds like a great idea. I will see if that will work on my mom also. good luck! Brandie

Hi - Can anyone share with me their experience using Temodar as a chemo to treat brain mets? This has been suggested for my Mom because a new met has reoccurred and there is some growth elsewhere that would not be a candidate for steretactic radiosurgery. I'd appreciate any feedback. thanks so much! Brandie

Hi there, My Mom also had leg weakness while on and after decadron. She has been on and off it a while and will be going back on it again shortly. The weakness did resolve - it just takes a while. I think the decadron can impact your muscles pretty severely, which is why they try to get you on and off pretty quickly. At any rate, stay hopeful - the weakness should resolve in a reasonable amount of time. Mom could deal with the weakness because we were both so relieved it wasn't because of some larger underlying problem. Brandie

I agree, Liz. Now that cancer has once again been brought to the forefront of the news, emailing and encouraging increased funding for research certainly cannot hurt! And not to get into a political debate, but the Bush Administration has seen consistent cuts in cancer research funding (since 2003), specifically to the NCI. For FY 2008, there is a proposed $11 Million cut, I believe. http://www.bloomberg.com/apps/news?pid= ... refer=news Brandie

Hi all, My Mom mentioned to me this morning that it would be helpful to speak to someone else going through a similar course as she. She's stage IV with mets and is 66 years old. She lives in RI, but is currently in Boston with me. Would anyone want to speak by phone with her? thanks in advance. Brandie

Shannygirl - Hi. I understand where you are coming from. My Mom is in the same situation. Middle Class - not rich enough to pay out of pocket and not poor enough for Medicaid. We are about to run into a problem where she will run out of the skilled nursing facility benefit she gets via Medicare. She has had WBR and stereotactic radiosurgery. I have to say that mentally she is fairly close to being completely gone. She cannot complete the simplest of tasks by herself. It is the most horrible, painful thing to watch. it is sad that divorce from my father is the only option for her as well. I hope you find out some useful info from social security. Perhaps there is still an alternative. take care, Brandie

Hi - My Mom has been diagnosed with this. I've read all the info out there. I'd like to know if anyone has dealt with this diagnosis and treatment (intrathecal chemo). Drugs used, etc. It seems there are really no options and little success. Thank you, Brandie

Hi everyone - Need your input once again. My Mom presented with facial paralysis on Friday night. Took her to ER. Ct scan and MRI ruled out any new brain mets. (She had just had stereotactic radiosurgery on Wed). Stroke is ruled out. Hemmoraging is ruled out. Her muscle strength is good. The most worrisome thing is she has some mental confusion. I don't know if that is from WBR?? They are doing a spinal tap this afternoon to check for cancer cells in the cerebro-spinal fluid. This is what I fear. Has anyone had experience with this? Thanks, Brandie

Dear Sarah, I am sorry to hear of all you are going through. I don't know the whole story with your Mom, but I would advise you get a second opinion. My Mom was diagnosed in July with Stage IV - widely metatstic cancer (including 6 brain tumors). She is still receiving treatment. You can read all the detals below my name. I am relatively new to all this, but I would want a hard and fast explanation as to why they will not pursue treatment. And if you don't like the answer, keep looking. Take care and good luck. Brandie

Hi everyone, I haven't written in a while as everything has been a bit overwhelming. I have a quick question though: Is it the norm to perform a CT scan after only 2 rounds of chemo? Is this because they think it is not working? I asked the doctor yesterday before the 2nd round whether or not my Mom's bloodwork showed a decrease in cancer markers...he avoided me by saying that they don't use markers in lung cancer...yet I have heard others reference them. Should I be worried (um, more than I already am)??? thank you! Brandie

Hello, I can emphathize with you all. I have noticed the reaction of people when they hear my Mom has lung cancer. She smoked up until 9 years ago. You can see in people's faces "I told you so," (those who knew she smoked) and "oh, well then..." (to those who were told she smoked). It is absolutely ridiculous to blame an individual for getting a disease from an addiction. When my Mom started smoking no one knew how deadly and addictive cigarettes were. Now we know, except not everyone is able to stop smoking (hence the addiction aspect). I especially find the government's stop smoking campaigns amusing. if the government really wanted to get people to stop smoking they would do everything in their power to help people quit. Why hasn't the government ever made tools for stopping smoking available for free? The patches etc aren't exactly cheap. But if the government goes against the tobacco lobby, that means a lot of money lost to a lot of politicians on both sides of the political spectrum. Lung cancer research must be better funded. I'll fight for that for the rest of my life. The under-funding of research is the equivalent to saying that people get lung cancer deserve it. Do people who get AIDS deserve it? No one deserves to die, period. And for all the rhetoric about the sanctity of life that we hear on a daily basis, I would like to know where the sanctity of the life of the person with lung cancer is? Where is the lung cancer victim's sanctity when that person's doctor searches for a treatment that does not exist because it wasn't PC to fund the research that would have gotten one step closer to saving that person's life.

Hi Amanda, I just sent you a PM. Brandie

Dear Amanda, I am sorry to hear of all you are going through. For what it's worth here's my two cents': I live in Boston and we are supposed to have fantastic cancer doctors. I can tell you that the medical oncologist we were assigned to at Dana Farber (the best cancer hospital here) was quite clearly not going to treat my Mom's cancer agressively - even though her status is good and she wants to fight. 3 medical oncologists later, we found one who was positive and willing to try whatever he could to fight agressively the way she wants. I can't quite figure out why 2 doctors passed my Mom up and the 3rd was willing to fight. But I do know you have options and as labor intensive as it is, you can go find them. I've also learned the squeaky wheel gets the grease, so be pushy if you need to be. It seems like it can be the only way to get people to pay attention sometimes. good luck with everything. if I can help in anyway, please let me know. take care, Brandie

Thanks again for all your replies. Here's an update: Mom's last dose of decadron was on Sunday. By Monday her legs already started to let up. Each day we get a little lighter. Her ankles are still massively swollen, but I imagine those will go down too. The doc recommended compression stockings, so we got some. I am not sure they are doing much. She'll have to go on decadron again in a high dose before chemo at the beginning of September, but I am thankful she was on it for such a short time. I've been on prednisone many times in my life and I am shocked at how much harsher decadron is. I also noticed that if we had not asked for her to be tapered off, they probably would have kept her dosing 16mg/day....I am still shocked at how closely I have to keep on top of "the best cancer doctors in the world." It is a bit un-nerving since my degree is in political science and not medicine!! Thank goodness for this board! Have a good weekend everyone! P.S. "cankles" - what a great term!! My mom will laugh!

Laura - I just wanted to say how sorry I am for everything you are going through. You will be in my thoughts. take care, Brandie

Hi everyone, I wanted to ask a quick question: My mom has been on decadron (16mg/day) since 7/24. her legs seem to get heavier by the day, to the point she can barely make it up stairs. One of the doctors seemed to allude to muscle weakness being a side effect of the steriod - but I am concerned it could be spinal cord compression or something else. In short, I am just wondering if anyone else's legs got really really heavy while on decadron? thanks a lot! Brandie

Hi - I am sorry to hear this happened to your Mom. My Dad had this happened to him - but he did not have cancer. The neurologist said it was a minor stroke (so minor, they figured he had had several of them with no one noticing). It happened once when my Mom and I were visiting him in the nursing home. All of a sudden his eyes were open but, exactly as you said, "he wasn't there" It also happened one time during a physical therapy session - "he wasn't there.." and then needed to sit down. I would just follow-up on it to make sure this is not what this is. I hope this helps. Brandie

Hi everyone, Thanks again for all the responses and wishes and prayers! I did manage to get her appointments for 2 second opinions - one at Beth Israel on this Thurs and one next week (which may be after the WBR has already started) at Mass General. I am so glad I found this board. My Dad has dementia so he really can't offer any support and my brother isn't involved at all (by his choice), so I am grateful to have people to talk to who are there and who have been there. thanks again. Have a good afternoon everybody! Brandie

Hi everyone, Thank you so much for your replies and so quickly! I really appreciate it. I have done all the logical things (harassing the oncology nurses, schedulers etc) and that got her intial radiation appt moved up. But now we have to wait until they make the mask on thurs (8/4) and then she still won't begin radiation until the following monday. I guess part of my impatience is that her primary care doctor back home ignored this for somewhere between 1 and 2 years. My mom kept going and they kept sending her away with a diagnosis of bronchitis. My mom was brought up to not question authority (she is 65)...especially when it comes to doctors, priests etc. Now cancer has taken over and everything still is moving slow. We are going to get a second opinion with Beth Israel on Monday (which shares research with dana farber, but is not clincally affiliated) and then Mass General if we are still not happy. I just want to keep her spirits up. She is a tough cookie and I know if someone can beat this into remission it is her. thank you, everyone again. Little things like this mean so much. Brandie

Hi - My Mom was just diagnosed with NSCLC Stage IV with 6 brain mets and 1 met to a single rib. Her upper left lobe of her lung (i.e. where the tumor is) has collapsed. She is seeking treatment at Brigham Women's/Dana Farber here in Boston with me. I have to say so far I am not impressed. Everything moves so slowly and even though I understand there are people ahead of us, I know there are always appointments left for emergencies. I had to yell and scream to get her into see a rad oncologist before August 10. We still can't get her a medical oncologist appointment before that date. She has severe shortness of breath and no one is treating that. She is on Decadron for her brain swelling. I just do not understand why everything is moving at such a slow pace. I also do not understand why she is only getting 10 days of WBR when I have read some people on here getting up to 20. She is (ironically) in relatively healthy condition. They also said she can't do chemo and radiation at the same time. Am I missing something? I feel like I should be seeking another opinion. But I am supposed to be at "the best" (or so everyone says). Do we just have duds for doctors? Am I just too impatient? Sorry for the long post, but I would really appreciate hearing from all of you as you have experience down this road. thank you so much. Brandie (and Rosemarie, my Mom)