Marci

Thank you all for posting and keeping me strong. You all give me strength here. Its funny my mom through this whole thing knows whats up and her I discussed that certain people are not there and not compassionate and she told me how do you think I became so strong on my own. So now I know I must find the strength myself. Thank you to Larry's wife for the post of mountain of strength, now I visualize it myself and I am sorry you had to endure the heartache you are going through too. Marci

Thank you so much for your posts, I really needed it. Marci

Thanks for letting me vent guys. I appreciate all of you so much. Marci

Hi Jackie, Welcome, sorry we can't meet on better terms. First off, congrats on your baby coming - a blessing on the way to keep happiness around through all this. Very terrifying, scary, and everything with this illness, but everyone on here told be doable and we would get through it and so far we have come a long way since my mom's original date of diagnosis. I can only say that my mom's throracic surgeon did not want radiation to be started due to the fact that in the area of the chest it was being done if too much is done surgery would not be an option so he and her oncologist decided to do a strong chemo first to see if shrinkage would occur and then he would go in and do the surgery for the lung and remove lymph nodes in the chest area where the cancer was. My mom was stable for quite sometime after that. Although her cancer came back months later this is not the case for everyone. But, see all this is doable and your mom could have excellent results with all that her Docs want. Check into the radiation thing though cuz I think once thats done and too much of it surgery would be out of the question (I think). You will get through this. The thing about the cold - I would not leave but do keep your distance and maybe pick up those masks at the pharmacy. Feel better and know you have found a wonderful place of comfort. Marci

Hi All, Me again, feel like I've been posting and posting my stuff but I just need to let out some stuff. After coming down to my apartment from a long evening at my mom's taking care of her I had a few drinks to calm my nerves and to just destress for a little while. Believe me I know thats not the answer but I had just broken down. I had made a phone call to my aunt(my mom's sister) and had broken down on the phone crying and I guess you would say carrying on about losing my mother to this disease. I had mentioned to her that I felt that my aunts were not there and that no ones gives us a call to see how we are doing nothing and in return I got told off by the end of the conversation about how my brother and I are not the only ones going throught this and that she cannot be our mother. I wasn't looking for a new mother I was looking for comfort and reassurance to get back up and fight. Our mother is sick so we don't have that pivotal person anymore. My brother and I are suffering so much trying to function with no one there for us. Is this how cruel it is for everyone? I know I must sound like a broken record but is this what I should expect going forward from people? I feel crazy over this just lost like a child even though I am 36 I feel lost. Marci

Thank you everyone for posting and sharing. Hope4life we sound identical with our mother's oncologists. My mother feels the same way does not want to switch right now. I guess not our choice it must be their choice. Thanks again everyone for sharing. Marci

Hi Everyone, First off, Happy Halloween to everyone! I forgot to post that on my last one. My mom has had radiation to her right shoulder and is currently on Carboplatin/Gemzar. Lately, she feels like there is a lump in her throat and when she swallows it feels like a lump she said. Not painful just odd feeling. Could this be from the radiation to the shoulder its close to the chest but the shoulder is close to the neck area/throat area? Could this be a side effect of the chemo? Has anyone experienced these side effects? Thanks Marci

Hi All, Most of you know the issues we have had with my mother's Oncologist. Such as not recommending radiation for my mom and barely communicating with us. We are just curious to know what communication most of you have with your Oncologists. When you call for issues not feeling well etc. do they personally speak with you and call and check on you once in awhile? Thanks for any feedback. Marci

Hi Lillee, I feel your pain and know what you mean about a routine. My mom has not passed and yet I miss all things already we used to do and share. I dread the actual day it really comes to pass. I know what you mean about smoking, I am having such hard time with that myself. You would think seeing all this would have made us quit - but yes your right its our routines. In our own time we will overcome it. You need to be patient with yourself and not be hard on yourself. I was told by a therapist a while back that while you are going through something very tough try not to change too much all at once b/c you will be overwhelmed. I wish you luck in your quitting though and yes maybe going to the gym would be a great diversion. I bought myself a bike in the hopes of riding when I feel I need to escape my thoughts. Now is the time to be good to yourself and baby yourself a little. Buy yourself something - I know $$$ is tight for most now but splurge a little maybe a piece of gym equipment or something else to keep you busy. Just a thought. I wish you peace and strength through out this difficult time. Marci

Hi All, I have been away from the computer last week and this week thus far taking my mom back and forth to radiation everyday and taking care of her. Also, taking care of all other things. The last couple of days I have been feeling very down and depressed. I feel anger, sadness, everything wrapped up in one. One minute feeling one than the other. I am resentful at my mother's siblings also. Through out this whole journey no one has called on myself or my brother to see how we are coping everyday. Everyone just retreats to their own little house and it seems they feel sorry for themselves and just ignore us only speak to us when making arrangements for rides for my mother and all and then to speak of how tired they are with work etc. I just can't believe this. This is the most difficult thing myself and my brother will probably ever go through and yet no one is there. My stepfather whom is my brothers biological father is in the picture but barely. What I mean by that is he was never an over emotional person in fact I would say until my mom married him and changed him he was emotionally challenged due to his upbringing not showing love etc. I just feel like I am in this alone and my brother as well. I am so tired lately too just not taking care of myself barely making it to work and just feel our whole lives are such a mess. So scared to lose to her I feel its coming. She has alot of pain and most days is bedridden except for the struggling to the doctors. Marci

Hi All, I caught this story on the morning news and I just thought I would share. Here is the link to the story they had on lung cancer yesterday. Very encouraging for stage 4 cancer and all stages but really gives hope to those who have stage 4. I wonder do we request this to our oncologists for this gene testing? Please give me your feedback on how you think we go about requesting this or has anyone out there requested this already? http://www.cbsnews.com/stories/2008/10/ ... 2119.shtml Marci

So sorry Lillee, I hope his passing is peaceful and I hope you will be there too. God Bless you and your dad and your family. Marci

Steven, Sending prayers for you and your mom. This board has helped me through so much and my mother as well although I only relay to her what is discussed here but it makes her feel hope and gives her strength when I bring home stuff to her to read to make her feel better. Not sure of the comfortability your mom has with this Doc. but we are in the middle of getting a 2nd opinion as we speak. I would only say to try and get other medical opinions from the start its much easier than to wait for more pain and stuff to occur. There is alot out there now and although the initial shock is hard there is hope. Alot of people have had shrinkage from chemo and there are drugs out there such as Tarceva that have helped others. I have just become informed on Tarceva on how it has stablized and helped others. May not be the magic for everyone but don't give up keep pressing and moving forward for care and treatment for her. Marci

Coni, My mom is going throught the same thing now. This is her 2nd line of chemo and she said the 1st is no comparison to this and its strange b/c she had the big guns so to speak the first time round and this time with gemzar and carbo she is just so weak and tired too. I too am nervous about this but pray and hope they will regain their strength soon from this nasty chemo. We just were given advice from the radiation place that acupunture can be beneficial for my mother. Maybe he would consider that in between the chemo. We met with the acupunturist at radiation and she said it helps with weakness, energy, nausea from the chemo. Just a thought maybe he would consider it to help. I hope he feels well real soon and know that I am thinking of you. Marci

HI EVERYONE WHAT IF WE ALL EMAILED THE FDA TO PUSH FOR APPROVAL OF THIS CLINICAL TRIAL FOR CIMAVAX EFG? LET ME KNOW WHAT YOU THINK. THEY HAVE A CONTACT PAGE WITH EMAIL ADDRESSES. http://www.fda.gov/ope/contactus.html MARCI

Well everyone I am posting back to my own post!!! Now its gettin crazy when you answer your own posts!!! LOL!! I just spoke to the Radiation Doc to see what we can do to hold her over till radiation relieves her pain and they said cortisone shot is not likely for this and that they would assist us tomorrow when we go with pain medication either upping what she is on now she takes hydrocodones and I think the chemo doc today mentioned to her about Dialudid. She was on the Fetanyl patch but it seems she said it made her sick to her stomach she was on 100 mg patch from I think starting at a 25. So guys cortisone shot out of the question. Ya know I know realistically there is not a magical pill for everything for this but I still hope for something to come close! Talk to ya later- Marci

Hi All, I have just posted so much lately!! But now is just I am in so much need for advice. My mother will start radiation to her shoulder. I was just curious if anyone ever had a cortisone shot for the pain to hold them over until the radation takes effect? She is just in so much pain and I will do anything for her. Thanks- Marci

Hi, Just curious as to know how everyone feels about getting B12 shots throughout chemo? My mom just wonders why she can't them for energy and the Doc says no we don't just give them out unless you have a proven deficiency. She feels she just wants it to fight fatigue. Anyone else know of the B12 shots? Marci

Hi Everyone, Just wanted to let you know that the Rad.Oncologist will begin radiation on my mom's shoulder immediately. My dad was so peeved that the regular Oncologist never recommeded this to us and we had to find this out on our own. He told my mom to stop being so nice and worrying about niceness and start worrying about her life now. My mom is very polite and we were raised to respect doctors, people I guess you would say high professions but respect is one thing here and doing the right thing is another. My dad said she should say to him if you don't have time for me than I need to move on here. Or I don't know if he has the mentality that my mom is Stage 4 amd thats it now. That is not the kind of Doc I want on my mom's team right now then. I am hoping this radiation gives her relief soon. I wonder how long into it you would generally get relief? I know he said she will do everyday Mon-Friday for 3 weeks I think. Thank you all- Marci

So sorry you are going through this with your Dad. Please know you are in my thoughts and prayers. Marci

Thanks all for sharing and thank you for the ibuprofen advice for pain. Radiation Doc called going tomorrow for appt. so happy he is an angel taking us in right away. Marci

Thank you very much for the replies. I too feel that radiation should be explored as an option. Its so crazy that I feel I have to think of these things myself instead of the Oncologist suggesting ways of reducing and relieving pain. So very frustrating. I have learned through this that you need to demand treatment and care or you can fall between the cracks or at least thats how I feel. Thanks guys for listening and for giving me feedback it makes me feel heard at least to someone. P.S. I have a call out to the radiation oncologist we dealt with before and we are awaiting a call back. Marci

Hi Everyone- My mom's cancer has metasicized to her scapula which is her shoulder blade. That is not a new development just one that has gotten bothersome. We thought the cancer was only in the tissue there but now I believe it is in her bone there and is so very painful for her. I suppose the Doc thought I knew it was in her bone but I did not. Anyway what is important now is for me to get her relief from the pain that she is constantly in. I had put a call in to the Doc and he referred us to either a Orthapedic or a Pain Management Doctor for this. Why can't this be radiated to relieve pain there? I am so confused as to what to do. My mother feels like a pain management doc would just cover the issue up with meds. I have no idea of how they would handle it and definitly not sure what an Orthapedic would do for her. Any advice on this I really need to get her the proper help on this to relieve her pain. Once again so frustrated with this Oncologist who just unloads us off. I am working on gathering her records now and making an appointment soon somewhere else for a consultation. Thanks Marci

Thank you to those of you who replied after my last message. I showed my mom the replies and she had such a feeling of hope after that. Thank you for giving her that. Marci

Hi Everyone, Wow, thank you so much for sharing with me. Yes, another opinion is what is needed I think in this. We are going to Chemo on Wed. 10/8 and I will speak to him on this again for his recommendation on it. I also spoke to my mom and although sometimes I am her voice when she is weak she too most importantly make him aware of her needs/requests for treatments. I guess I am just her funnel of information since she is to down to research herself. I just want her to be informed because to me it seems informed patients have a longer survival time and more quality of life than those who are less fortunate to have access or have someone to keep up looking for things out there. Again, thank you from the bottom of my heart. I will keep u guys updated after the trip to drs tomorrow. Best to you all and hope you are all doing ok. Marci