Guest marta1 Posted April 24, 2003 Share Posted April 24, 2003 Hello everyone... I have been reading your posts for almost a month now...but just finally getting up the strength to sit down and type my introduction. My 45 year old mom was just diagnosed with stage iv nsclc...she has mets to left lung...lymph nodes and two bone sites... Unfortunately..she has been in pain with the bone mets for several months now...and no doctor took the time to work her up properly...as a result..she has extensive mets to her 10 rib that have taken up her entire bone This entire time she has been given pain meds and more pain meds..but no one went looking for another answer..all they said was that she had a fractured rib that must have just "broken" on its own..so as a result of the extensive pain and over load on pain meds she has lost 45 lbs, her appetite and her will to go on. She can't sleep...and my father is also having a hard time. The plan to start chemo is on hold because of the fact that she is so weak at the time of her diagnosis...I'm the only child...22 and living six hours away.. Right now she is in radiation therapy for her bone pain...and a lot of oxycontin...We have to build her up so she can fight this thing... I'm scared as hell...and am well aware of the "non-curable" part of this diagnosis... Luckily, I work at Dana-Farber in Boston and had her there in a heartbeat...but they live in Pennsylvania so they are having treatment at Fox chase in Philly.. Anyway..she is in good hands I suppose...but I am still questioning everything....I dont trust doctors after the first one who gave her the diagnosis told her there was nothing they could do... So..nice to meet you all..I have been praying for you every night... Laura Quote Link to comment Share on other sites More sharing options...
Tiny Posted April 25, 2003 Share Posted April 25, 2003 Dear Laura, So sorry to welcome you here but am glad you found a little time and energy to introduce yourself. Your mom's story is very familiar to us, but know that we are here to offer support, information, and friendship and HOPE. I'll be praying for your mom and family, too. Quote Link to comment Share on other sites More sharing options...
SandyS Posted April 25, 2003 Share Posted April 25, 2003 Laura - Sorry about your mom's news. Take it one day at a time, and come here for all the support you need. Prayers and hugs for you and your mom, SandyS (I just turned 42 myself............) Quote Link to comment Share on other sites More sharing options...
Marie Posted April 25, 2003 Share Posted April 25, 2003 Sorry you and your Mom have to go through this. I don't trust doctors either but Fox Chase is an excellent facility. My LC was missed on an xray 3 yrs before Dx'd. and that was at the Univ. of Penna. Quote Link to comment Share on other sites More sharing options...
Deanna M. Posted April 25, 2003 Share Posted April 25, 2003 Dear Laura, I am so sorry your Mom has LC. I know it is so difficult. I am an only child too so I know how that feels. Please come to us as often as you like for support, this group is wonderful. I am praying that your mom gets strong enough really soon to get that ball rolling!!! Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted April 25, 2003 Share Posted April 25, 2003 Laura sorry to hear about your mom, but i think my dad and your mom have similar issues. He goes to mass general, I live literally 5 minutes on the outskirts of Boston (Winthrop to be exact if you know where that is) My dad is stage IV has bone met. (among other things now) and is hoped up on OC's and doing radiation & Chemo. and it was strange cause he went in for a yearly physical and just mentioned he had a nagging cough...after some test, lung cancer. on the weekend of the biopsy though he said his rib hurt...thought i bet i bruised it from coughing and/or the needle biopsy made it hurt more...nope met to the bones his rib cracked due to the met. so so strange to me how it all comes together in this weird way, like healthy....really sick and your falling apart. It is very hard trust me i know!!!!! and to me the "non curable" thing doesn't exist. Those are just stats, crap i think they have to "prepare" people for. Like they might be held liable if they give someone false hope, so they give them false doom...pleasant! I hope your mom gets her strength up to do chemo cause it will help to shrink the tumors. and hopefully the met. can be controlled and the tumor shrink to where they can operate! Chemo is no fun either but if it can help...so I will try to look past the bad in it. Any time you need to chit chat please do so!!! Honestly this board has been such a benefit to my dad AND me! Be positive!!! Quote Link to comment Share on other sites More sharing options...
mirrell Posted April 25, 2003 Share Posted April 25, 2003 aredia or zometa for bone mets has been known to help pain and maybe give her pain relief without compromising her immune system. you have to ask the doctors. Quote Link to comment Share on other sites More sharing options...
Laurie Posted April 25, 2003 Share Posted April 25, 2003 Hi Laura, Welcome. I'm so sorry to hear that your Mom has Lung Cancer. I hope that you will be able to find hope and answers to some of your questions here. I will pray for you and your Mom, hang in there and feel free to vent or ask any questions. Blessings to you. Laurie Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 25, 2003 Share Posted April 25, 2003 Laura, my wife also has nsclc, with bone mets. She had to undergo radiation on three of the five locations because of endangerment to the bone area. She started chemo shortly after starting radiation. Do continue to ask questions and push for satisfactory answers. Do keep pushing the doctors and the system for the best treatment for your mom. Every patient needs an assertive advocate for them, since they are frequently too tired, too drugged, too sick to fight for themselves. Also, continue to give your parents all the support you can, realizing that we all have limitations on that and need help and breaks ourselves. My prayers are with you. Don Quote Link to comment Share on other sites More sharing options...
ginnyd Posted April 25, 2003 Share Posted April 25, 2003 Laura, Hi, I am the Ginny you emailed previously. How did it go with Dr. Cohen? We just met with him last week for the 3rd time and we find him to be very encouraging and caring. We are very happy with all of our contacts at Fox Chase. Earl just finished radiation there and they were wonderful to work with. Accomodated a change in treatment time a couple of times due to my schedule. Hope everything goes well. Please contact me if you have any questions. Quote Link to comment Share on other sites More sharing options...
Mary Posted April 25, 2003 Share Posted April 25, 2003 Laura, Welcome to the boards. Come here for support and understanding. I check the board usually everyday but seldom post. There is alot of inspiration anf community at the site. Best of Luck, Mary Quote Link to comment Share on other sites More sharing options...
Guest marta1 Posted April 25, 2003 Share Posted April 25, 2003 thanks everyone for all your support!!! It is so reassuring to hear that there are other LIVING with this disease...and praying for the cure too!! My mom is holding up as well as can be expected...I told her to start visualizing the radiation killing the cancer cells..I haven't stopped asking questions to all the doctors and my job helps (I work in cancer research in boston)...although I still have to push them to listen! Ginny, our visit with dr.cohen went well..he is very mild mannered and spoke with us at length...we like him a lot!!! I did find it strange that we left without scheduling a follow up appointment! I drove through Ambler and I thought of you and your husband... My big conquest is getting my mom on here to read your stories..Hopefully when she feels better from the bone pain that she will want to know about each and every one of you SURVIVORS!!!! Thanks again all!!! Laura Quote Link to comment Share on other sites More sharing options...
Guest marta1dad Posted April 27, 2003 Share Posted April 27, 2003 I'm Laura's (marta1) father, and I deal with her mothers cancer (bone met to 10th left rib) everyday, and every night as well. I must say that the presentation of the disease was more than strange, and her doctors were into given pain shots to her back at 2300.0 a crack. I finally went ballistic and demanded a bone scan, which of course showed the cancer. After going to upenn, we were told it really didnt look like cancer, but after holding the CT results for 3 weeks, they finally told her it was cancer. The astonishing part is that she has the best insurance, and no one (except D/Fand BW) really tried to find the problem. Health care is a business, and they are paid to find and treat disease, not cure it. Were it not for Laura as an insider at brigham and dana farber, we still would be getting pain shots at 2300/shot. When Salk finally took polio vaccine public, a generation of professionals were out of work. Slow or inadequate health care isn"t health care at all. Much thanks to lala and her friends at B/W and D/F David proud father of a dedcated daughter wife beth dx w/nsclc IV 5/16/03 Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted April 27, 2003 Share Posted April 27, 2003 Marta's dad!! Bravo you are soo soo damn right on that one!! Health Care is a business and lucky there are some good dr's out there (and here in boston i am glad i live here cause we have a GREAT health care system and GREAT Hospitals!!!) Please keep visiting here cause so many people have helped me find other treatment options and the questions to ask to get the best care!! Quote Link to comment Share on other sites More sharing options...
Guest hopeful2 Posted April 28, 2003 Share Posted April 28, 2003 Have you ever thought what would happen if cancers were eradicated? Thousands out of work, drug compaines losing millions, hospitals closing. I remember hearing someone HAD found the cure for cancer but they put him in jail or something. True? Who knows. I'm sure alot more goes on than we know. Quote Link to comment Share on other sites More sharing options...
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