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pamlee1

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  1. pamlee1

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    Lilly: I don't post much but still stop by the boards to see how everyone's doing and yes I can relate to what you're talking about. Lost my sister Ruby a little over a year ago to nsclc after a 10 month battle. I was her caregiver thru it all. Just before she was diagnosed we were shopping and I bought a Ray Charles CD and there was one song on there we just loved and used to crank up the volume when it played; played the cd on the way to her treatments, etc. Just after she passed away I was just a mess; would be driving somewhere and crying and was also dealing with her estate and one daughter who was a nightmare. I always had that cd in the cd player. I'd be driving along and miserable and out of nowhere the radio would stop playing and that cd would start playing that very same song she loved. This happened to me 4 or 5 times during the first 2 weeks. I even took my car in to be serviced and asked them to check why the cd player was coming on by itself. They assured me it was working fine and that it could not come on unless I pushed the button to play the cd. I knew it was and that it was her way of telling me it was okay and that she was fine and not to worry about her. For about 4 months this kept happening although not as much. It happened again about 3 weeks ago and in another vehicle. So, I believe our loved ones are still with us and I believe they comfort us in ways that only they can. It's so hard to lose someone you care about so much and especially after a long battle with cancer. So, now when the cd player starts with that song it just brings back wonderful happy memories of my dear sister and I know she's watching over me.
  2. Trish: Your Mom's situation sounds very similar to what my sister went thru only in sis's case she did have mets to spine and left thigh bone. She was in severe pain; had become very immobile from pain and treatments, losing weight, etc. Ortho doc insisted surgery to put pin in thigh to stabilize. This surgery cost her about 6 weeks just to heal/rehab during which time no other treatment could be done. Looking back I wish we had asked about quality of life issues and ongoing treatments for what was already distant mets; Our situation the onc did not seem to want her to have surgery but ortho said it was her only chance to prevent a total break. He won the argument with us but I feel it did not give her anything substantial. I understand there is also some type of injectable "glue" type substance they can use to stabalize and control pain which is less invasive. Don't know how major it would be to put pins in hips. Hopefully you can trust your onc to guide you on this. He should know if your Mom could endure that type of surgery and the benefits. Just wanted to let you know my experience with this. Pam
  3. My Sister had nsclc with met to brain (1 tumor only). Her onc recommended she do whole brain radiation followed by cyber-knife to the one tumor. The reasoning I got from that decision was to make sure any other mets to brain that were to small to be seen would be treated. I think I would get another opinion if there is nothing showing on scans. Good luck. Pam
  4. It's been a long three days but this afternoon my beloved sister passed away with her 2 sisters and 2 daughters by her side. She fought so hard but in the end it was a long, painful two weeks until the morphene was increased enough to comfort her during her last days. It shouldn't be this way. She died a horrible death. Thank you all for being there for me and prayers to everyone dealing with this monster.
  5. Well, things are so really bad now and don't expect my sister to survive the day. Still in hospital and treatments for pneumonia (none showing on xrays) has not been effective; Dr's still feel it's copd that is causing all this. I know it's Lung Cancer that's causing all this. She's on heavy morphene for comfort and hard, distressed breathing. Not able to communicate and devastating to watch. Last night so much fluid in lungs had to be suctioned. My anger at this disease is unbelievable at this time. I just know that more could be done to prevent this from happening to our family members. She's suffering so much and I guess I wonder how much she's aware of in this state. Please pray for her.
  6. Hi Everyone and thanks for your kind words of support. I just got home from hospital visiting my sister and she seems to be doing a little better on her breathing issues but still very weak. How can one know when the time is right to discuss end of life issues? I've watched her deteriorate but felt she has always had hope of some easing of her burden. When she was admitted to hospital this time she had the severe SOB with horrendous wheezing. Dr's did not know what was causing the problem. They are now saying maybe a stapf infection and some pneumonia. When first admitted her Onc & Lung Dr both asked her what her wishes were should she need breathing machine. I think it threw both of us for a loop. I guess I couldn't believe they would even ask her that in her condition as she then asked them if she was going to die. It was all I could do to be composed. God, I hate this disease. Thanks again for your support...Pam
  7. I've posted a few times before and constantly read the many posts looking for encouragement, grieving with the many loses and just wishing I never had to be here and never dreaming I would. My Sister needs your prayers as she's going thru some rough times right now. She's been unable to start chemo again since March because of surgery to leg to insert pin&remove bone met; was in severe pain before but pain in leg reduced with surgery but by then her body was weakened by chemo/radia so rehab has been hard. We had so hoped she would get the surgery out of the way and be able to resume chemo as obviously the cancer was spreading. She had/has a met to spine with a collapsed vertabrae which at this point only has had radiation. About a month ago at my insistence I asked her onc. to order a brain scan because of headaches. Not much of a surprise but she also has a single met to brain. So began another journey with dr's/appts/deciding on WBR in conjunction with CyberKnife or just Cyberknife. Everything takes time and one thing cancer patients don't have is a lot of time. It's so frustrating. About 3 weeks ago she starting with severe SOB, couldn't walk from room to room without breathlessness. It's been hard for her to be up and active getting her lungs moving so I believe a lot of this is because of being in bed a lot and not active. A three day stay in hospital showed nothing with lungs, heart, blood and dr's just said it's her COPD acting up (funny it never acted up before); A week ago today I insisted she go back to hospital, get admitted and get some help for these issues as she was just getting weaker and weaker. The last 2 visits to emerg.room they did Chest CT's so two very recent ones were available. I was speaking to her onc. outside her room and he proceeded to tell me that he had reviewed the 2 CT's and it was showing a small spot on liver. I was so upset for her I asked him not to mention that to her right now because I just didn't think she could "mentally" deal with this on top of what's she's going thru now. He then proceeds to say, oh, by the way, when she had her leg surgery in March, the blood used for transfusion -- he received a notice from the Red Cross that the person giving blood to her had subsequently come down with Maleria. As her primary advocate/sister&caretaker I don't know how much more of this we can deal with. He assured me that shouldn't be a problem because it was sufficiently after the blood was donated. So I have a sister who's whole imune system is compromised and now this. I could have strangeled him but know it wasn't his fault. So, she's still in the hospital and they are treating her for pneumonia they can't see on x-rays and copd for breathing -- 15mg decadron ev 6 hours and so much other meds. She's also undergoing WBR and will get cyberknife upon completion of that. When cancer hits a member of your family your life drastically changes. I ache for her every minute of every day; I see the fear in her eyes as well as the pain and suffering. Initially I was all about trying to get her to a point where the cancer wasn't growing and now all I can think about is quality of life. How much can a person endure on this journey without losing themselves along the way? Sorry for rambling on but I needed to get this off my chest. Not many people would understand. Thanks for listening and prayers to you all. Pam
  8. Karen I'm so sorry to hear the news about Dave. I know how hard it must be on both of you and I'll be praying that you get good news with the spinal tap. Although I don't post much I've watched Dave's progress as it's so close to my sister's battle. She is experiencing the same progression right now with brain mets and spine mets. They will do cyber knife to brain but like Dave she's in extreme pain from spine met. Tumor to spine has caused collapsed vertabrae. Much pain and very little relief. Praying for better days for you both. Pam
  9. Hi everyone. I don't post a lot but spend a lot of time reading all the posts and I've just gotten so much information from this board. You're an amazing group of people and with lots of Attitude! I've posted before about my sister but things seem to be going downhill fast and I'm so worried that she cannot deal with all that's being put on her plate right now. As you'll see from her bio she completed first round of chemo with lots of tumor reduction and lymph reduction but at time of scans bone mets were discovered to her hip and T-11 spine. She has been in pain since March. The large bone in her thigh snapped requiring surgery to stabalize with pins, etc. Tumor in leg was removed and pin inserted to stabalize; While recuperating back pain started and increased so much she's just miserable. So dr's ordered more films and decided to radiate her spine which was done for 2 weeks. Apparently didn't work. Met with ortho surgeon yesterday who ordered x-rays of spine and he thinks the T-11 vertabrae has collapsed and wants new mri and meeting w/spine surgeon. I'm just so depressed right now and afraid for her. I read and research constantly and frankly not reading too many positive things about what she's going thru now. I'm just wondering if anyone else out there has had similar problems? She had just finally gotten to the point where she could start chemo again and all I see now is that won't happen; more surgery, delays and cancer growth. Sorry to be such a "downer" but it's been a rough few days for her and the family. It's just so hard to watch what lung cancer does to your loved ones; it's so unfair that more isn't done to help with earlier diagnosis so people have a better chance and hope. I even asked my dr. about getting a ct; he said insurance companies won't pay for them unless there is a reason to suspect a problem. Seems stupid to me to not do ct's early but for insurance companies to pay out the many thousands they do during this type of illness. When we meet with the surgeon on Tuesday I'll be armed with questions. She needs some kind of fix to spine but I think she needs chemo just as much so there's just a real dilemma. Thanks for listening; I just needed to vent a little. God Bless all of you and keep up the fight. Pam
  10. Kim: I just recently went thru the same thing. Received letter from Radiology that I needed more views and ultrasound; they saw a 12mm mass; scared me to death...Unable to get a repeat appt for 4 weeks so because I was so nervous I called Hopkins Breast Center and got a quicker appt. Many times the mammogram can't tell a lot; just areas that need further investigation. Mine turned out to be a cyst which they drained. Tell your mom to try not to worry (although I did) and try to go where they can do whatever is necessary to give you an answer same day. The waiting is just to awful to bear. Pam
  11. As posted before my sister was taken to hospital in severe pain; appears her bone (less trocanter) snapped as a result of a bone met. She underwent surgery on Thursday to which opened up her thigh and inserted a plate/pin to stabalize. Surgeon was an ortho cancer doc. and said he scraped the tumor out and stabalized. After 2 days in the hospital they let her come home today. I was not at all comfortable with that. She's been given no restrictions other than a walker to assist her. The pain from the fracture is gone but now dealing with surgical pain. Surgeon says in about two weeks time she'll need to have radiation to bone as well then hopefully can resume chemo. There's just so much pain with this disease it's hard to understand how they endure it. Day to day everything changes! Doctors were amazed that she was able to get out of bed (with help of course) and walk a few steps day after surgery. My sis has a lot of stamina and hates to be waited on. I cry for her inside every time I look at her and see the radical changes; the pain and the hope. I know she wants to get better but I know too that she just doesn't think it will be. But for now she's ok and home resting. When the cancer gets to the bones (she has an area also on spine) everything has to stop to deal with that making chemo not possible and risking other setbacks. I just pray for her to get some improvement and have a quality of life at some point. Her life now is consumed by doctor's appointments and treatments. Good luck to all of you out there and wishing you a Happy Easter. Pam
  12. Hi everyone; We just returned from hospital....seems my sister's hip bone area was weaker than thought. Today, lying in bed she heard a "pop" followed by what she described as a hot searing pain in her hip/groin area. Needless to say we called an ambulance as she could not move. Hospital x-rays confirmed she has "pulled" the lesser trocar bone(not sure I have that right) and has bone weakness in other areas near hip. Surgeons are going to discuss options with us tomorrow but seems it would be a pin inserted in bone to stabalize or a partial hip replacement. Damm!! She's in the hospital w/morphine for pain which seems to help. Anyone here have to go thru a hip replacement while fighting the "beast"? Keep us in your thoughts. Pam
  13. Hi All: Had an appointment today with onc & ortho dr. and the general consensus is that the bone met being so painful the ortho doctor feels the bone is at the pont of breakage and recommends surgery to stabalize the bone. The onc. doctor said that in his experiece radiation stabalzes up to 80'% of bone met. The ortho doctor disagrees....he feels that better quality of life is obtained by surgery, of course he is prejudiced. He said my sister would lhave better results with surgery as she would not have to use "walker" or keep pressure off hip joint. It is so confusing. Would like to know if any of you have experience with bone mets that led to surgery. She is scheduled for surgery next week. Think the only reason she agreed to that is because the ortho dr. said after surgery she would not have to restrict useage of leg; without surgery she should use walker even with radiation for several months until bone has chance to heal. I did insist on consultation with pulmon. dr. to evaluate shortness of breath as have some concern about proceeding with surgery if there are other issues regarding lung. Ortho dr. said good results with surgery unless tumor grows. Right now she's had her second week of chemo (ev. 3 weeks) and would have to postpone additional chemo until after surgery. Any input is appreciated. Thanks for listening. Pam Also, last blood work showed elevated levels with liver panels....I'm thinking it's about the IV Zometa that was given for bone mets 2 weeks ago @ time of chemo. I'm a firm believer that the doctors don't know everything and that as patients and caregivers it's up to us to ask questions and get answers before we move forward. Lung Cancer treatment is not a exact science and there are so many options avaialble as well as so many hurdles to overcome. I guess it's just my way of dealing with all this is to be sure that I know as much as possible of treatment options available.
  14. Just wanted to post a quick update on my sister. She's having so much trouble with pain from bone mets. The oxycoton is making her so out of it she can't function so over the weekend she decided not to take it and to switch back to the motrin. She's more alert but pain management is not good. She thinks the oxycoton is making her have trouble breathing; is very short of breath and smothering. We have an appt. with her onc today and I'm going to ask about having her evaluated by a pulmon. dr. as she has not seen one of those yet. I'm concerned there has been damage as a result of the radiation that's causing the problem. Her appt last Monday was with her onc as well as an orthopedic dr. He of course recommends surgery to stabalize the bone met; didn't get the impression her onc was totally on board with that but today is supposed to be a re-evaluation of that issue. Seems to me when they manage pain with such strong drugs and you lay in bed all day that would not be good -- fear of pneumonia, etc. So I just don't know what the answer is. There was a segment on the evening news the other day about a new cancer drug for lung cancer patients called Avastin. Anyone had any experience with that? Said it was showing remarkable improvements in lung cancer patients. I'm going to ask about that today. My guess is that sis. is not going to be able to do next chemo unless they can get this pain stabalized as the pain is just wearing her down to the point she could not handle chemo side effects. Sure would be nice to have some good news occasionally. Well, off to the dr's appointment and will post later. Thanks for listening, Pam.
  15. Just needed to post an update on sister's battle.. As I mentioned before my sister's primary tumor has shrunk till it's almost not visible on ct scan and lymph involvement has reduced as a result of her initial chemo/radiation treatment. She's now into her second round of chemo every 3 weeks four treatments. Seems to be tolerating the chemo sort of ok...it's so hard to tell with all the side effects then meds to reduce the side effects. She's having so much pain from bone met in her thigh area we met with her Med. Oncol.& an Ortho. Surgeon last week. Decision was to wait a week and re-evaluate after seeing if pain meds made any difference. Right now the oxycoton is controlling the pain some but she spends most of her time in bed from being sick at stomach and sleepy from meds. Her doctor feels it's important to try to complete chemo but said if pain too bad may have to stop chemo and either consider radiation or surgery to stabalize the bone. Anyone had any experience with this. She just seems to be getting so much worse I'm getting concerned about surgery but think it may be the best for her. Guess I just don't want her to have surgery only to find out cancer is still progressing. Just seems like a lot more to pile on when she's already enduring so much. It just hurts so much to see her having to deal with this. I know the pain is pretty bad right now and dont' think it's too good to be doing the heavy pain meds for too long especially if you can't even get up and move around. She also seems to be more short of breath than she ever was...could this be as a result of the radiation? Last CT indicated some damage and mentioned radiation as a cause. It's just hard to believe someone feels pretty ok then gets this dx then it's all downhill during treatment. We have another visit with the dr's this coming Monday so guess we'll see what they recommend. Thanks for listening. Pam
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