Trish

Larry, I'm so sorry. You are in my thoughts and prayers. Trish

Hi Holly-- All the recent loses have me down too. My daughter (9 years old) says she wants to be a scientist so she can discover a cure for cancer to save her grandma and help other families so they don't have to go through what we are going through. I am proud that she strives for this but sad that she is so young and has to "see" so much. Holly, you are very generous to continue lending support when you have just lost your own mother and have a newborn! I can't imagine what you are going through. You and your family are in my prayers too and there has to be better news SOON! Trish

Gosh, I don't know where to start. My parents met with the orthopedic specialist on Thursday to discuss putting a pin in mom's right hip. He looked at the Mri results and said he couldn't tell whether it was actually cancer or damage from the steroids! He said the right hip looks like it has more danger of fracture. So, he had mom get more x-rays and schedule a bone scan (he said if it was cancer, it would light up--is this a pet scan--she has not ever had a pet scan). He said if it is cancer, she should get the pin put in and start radiation but if it is steroid damage that she should not get the pin. What?? I spoke to my mom's oncologist about the above and he said the surgery is only a one night stay in the hospital and that it was a small incision and not invasive. After the surgery, she would have to wait 10 days to start radiation. My Mom is in so much pain right now from her back and tailbone and not able to start radiation. In the last two weeks, she has been marked all over her chest for radiation to the collarbone only to then get more tests and get marked all over her back and hips to then not start radiation again. She is so marked up--it doesn't even look possible to radiate all of the marks on her body! I'm sorry to complain, but I'm really frustrated and angry that my mom is having to go through all the steps and not get any relief from her pain. Thanks for listening and for any advice you have. Trish

Carleen, Sorry, I don't have any answers for your questions but I will put you and Keith on the prayer chain at my church. I hope Keith starts to feel better soon and that he is accepted for the trial. Trish

Things are changing by the hour! My mom was supposed to have radiation to her shoulder blade last week but the radiation doctor decided that her pain should not be that bad from that area and ordered an mri for the lower spine and hips. The mri was Monday and the results were rushed so we would have them Tuesday. The results were not good. The lung cancer has moved to the L4 vertebrae, sacruum (tail bone) and both hip bone joints. She was supposed to get marked today and start radiation to those areas and leave the shoulder blade area alone for now. Well, she got marked but the doctor thought she should have a consult with an orthopedic doctor for pins to be put in both hip joints for stabilization. He said both joints had cancer inside and outside of the bone and were at risk for fracture and possible breakage from the radiation. They set up the consult appointment for tomorrow already. I called her oncologist but he was out today. He is supposed to call the orthopedic doctor right away in the morning and then will call me. My mom has not been eating for the past month and has lost 25 lbs. I think her liver tumors may be causing this but they aren't doing bloodwork to check that. Hospice has not been brought up yet. I know I'm rambling but surgery, even though he said it would just be a pin for stabilization, is still surgery and my mom can barely get up anymore. I guess I'm asking for your feedback and experiences with this. If this is beneficial (I know her doc will judge this) of course I want her to do it but I just wonder how she will be able to recover from surgery & then radiation. Thanks for your time & advice. Trish

I'm deeply saddened by the news of your moms passing and also encouraged by your strength. My thoughts and prayers are with you and your family at this time and through the holidays ahead. I'm sorry for your loss..........Trish

((((Beth & Bill)))) May you both feel the love and support around you at this difficult time. I am so choked up...I don't know what to say expect that I am thinking of you both and praying for you. Trish

I'm so sorry--I was hoping no news was good news. Your family is in my prayers. Trish

Kim, I totally understand what you are talking about! My Mom finished 26 WBR for her brain mets a couple weeks ago. She is very tired but still wants to keep up the pace she used to. I want her to not wear herself out and get sick trying to "keep up." It's tough to have your Mom sick and sometimes I just wish everything could be normal again. Hope things improve for you & your Mom. Trish

My mom just finished 26 Whole brain radiation treatments on Friday. She was hoping it would help the double vision she has been having since August but it hasn't. The radiation doctor told her that it may be permanent but it still might improve in the next couple of weeks since the radiation will still continue to work. Has anyone ever heard of this? She wears a patch on her left eye and has a prism sticker on the right part of her eye glasses. If she has both eyes open she has double vision. Her balance is off and she has been using a walker. She had radiation Monday through Friday and it took us 45 minutes to get there each day for the 10 minutes of radiation to then drive 45 minutes back home. Mom could get around for about 1 hour once we were home but then was just too tired and stayed in her chair for the rest of the day. The steroids made her face swell and her appetite is crazy. She is frustrated that she had gained so much weight but feels like all she can do it eat. She goes to see the oncologist on Tuesday and is eager to start chemo again since it has almost been 6 months since she has been on it. She is really concerned about the enlarged lymph node on her collar bone. The oncologist was concerned about that in August too but didn't feel she was strong enough to do radiation and chemo together. I guess, I'm really scared for her, especially after she seemed like everything was back to normal for 4 months. My Mom has always been really tough and never complains but my Dad said she is really depressed, especially with not being able to drive. I live an hour away but go home with my 8 and 6 year old to help keep up around the house & farm. Plus, she loves seeing her grandkids. I guess, I'm just really emotional right now and wondering what can help my mom and what the doctor will say on Tuesday. Thanks for any ideas or similiar stories, Trish

Cheryl, I am so sorry that this is happening to you! I will put you in my prayers and add your name to my church prayer chain. Please remember to keep your hope and faith---you can treat these now that you know they are there--believe this! Trish

:This is very sad news. I am so sorry! You are in my prayers! Trish

Hi! When I first put a patch on for my mom, I didn't take off the clear plastic part that lets the medicine out to absorb into the skin! I wish the nurse would have just showed me how to do it instead of trying to explain it. When we finally figured out our mistake (when it was time to put a new patch on) I felt horrible that my mom had went 3 days without any pain help! I believe the doctor said it takes a full day to get the full effect of the patch into the blood stream. I hope this helps ! Trish

I'm glad you are okay and that your home is fine. As I was reading your story, it reminded me of how sometimes life is unable to be planned. Crazy things happen when our lives seem to be as crazy as we think they will get. Again, glad you are safe! Trish

Carleen & Keith, I have been very worried about you two! Glad to see your post and glad that you are going to try the clinical trial. Carleen--make sure you are finding time to get enough sleep. With everything that you are trying to take care of and plan you still need to get your rest to take care of yourself too! I'm sending positive thoughts, energy, & prayers for you two! Trish

Dear Ginny, I knew Earl was gone when I read "The Final Chapter." I am so sorry for your loss. I wish I could express how my heart aches for you but I cannot find the appropriate words. You are in my thoughts and prayers. Sending back some of the strength you have given to so many members to get through this. Trish

Paige, So sorry for your loss. You are in my prayers. Trish

I just went to the oncologist with my mom to go over her CAT scan and bone scan from last week. The doctor said no new growth is good but he would have liked to have seen some reduction in any of the tumor sizes. He said her liver is not as enlarged as it has been and the numbers have went all the way down to normal functioning but she still has the five tumors, one of which is 6 cm. Her platelet count was low and he said if it continues to go down she might not be able to get the 2nd part of the fifth chemo. (She got the lst part of the chemo after the appointment). I don't know what to think. I am happy that there is no new growth but scared that the cancer is still in all the other places without disappearing or getting smaller! My mom is getting Zometa? for her bones and Procret for the fatigue too. The doctor said that 6 rounds of this chemo is what is shown to be effective but she could do more if she was happy being stable. I am so confused! Do people really have it in all those places and stay stable? I'm trying to prepare myself and give my mom hope and strength but it is difficult and I feel very lost. My Dad doesn't really understand what the doctor is saying either because the doctor said he has one stage 4 patient who has made it almost 4 years switching chemos. I read this sight daily and have become consumed with the peoples real life stories and am really, really, really scared of how my moms story will end. Thanks for listening.

Thank you so much for taking the time to share that information! It really helped me to better understand my mom's situation. Glad that you & your husband had a good visit! Keep up with the positive energy! Trish

I cannot find the words to express how much I have been thinking and praying for TBone and his family . May you continue to find strength in each other and feel all the hope and prayers coming your way. Trish

I really appreciate those of you who have taken the time to post back to me! My mom is back to having the nausea again since she had her chemo on Thursday. This is her lst day of the 2nd cycle of chemo. She had taken her morphine patch (for 72 hr. relief) but started having the pains in her ribs again Friday morning. She is worried that is a bad sign. She thinks she shouldn't be having the pains during chemo if it is working. She worries that the rib/back/liver pain is because the tumors are growing. She will have the CAT scan next week to see if there is any change from April 19th. Did I mention that my mom has not lost her hair yet? She said she is not touching it in hopes she might not lose it but she lost it right away when she had chemo for her breast cancer 5 years ago. I think the chemo she is receiving now is supposed more agressive too. Anyway, my dad is having a real tough time too. He was going to retire but he thinks it is better to keep busy than sit around and dwell. My mom has always stayed home and took care of me, my brother, and sister when we were little, and paid all the bills and took care of the house, meals, etc. He is trying to figure everything out and do it the way my mom did it--she is very particular! We are hopeful that this reduces the tumors and slows the cancer down. My husband and I will be able to help out even more because we are both school teachers and only have this next week of school left. We can take our 2 kids out to their farm and they have plenty of animals to occupy them while we help out around the house, etc. Thank you again for your support! Trish

Becky, Thanks for replying! My mom did sign conscent for my dad and I to be allowed to call and speak with nurses and doctor. I'm sure I'll be calling tomorrow. I am trully confused with what a "bone met" is. If she has cancerous cells in her bone marrow of her femurs, is that considered a "met?" And how can a lesion and tumor on her liver be the same. He said one lesion was 4 cm which seems to be rather large and explain the problem she was having with not being able to eat. When they say there are spots on the ribs and spine and base of skull I am so confused. It there cancer just running through those areas or is there a tumor there? Does the chemo just totally eat/ the cancer. And when my mom is having such bad pain after chemo I wonder if it is because it is helping??? If anyone has experiences to help me I would really appreciate it! Trish

Hi--I hope you can help me! My mom was just dx 4-19-04 with stage 4 nonsmall cell lung cancer. She had breast cancer 5 years ago but doctor said this primary site a tumor in the left lung. Here is the situation. In February, my dad told mom to go get her cough checked out. An x-ray showed a mass so they did a bronch scope mid-March and said 1/4 of the left lung was collapsed. The tissue sample came back as noncancerous. They scheduled a pin-prick biopsy of the lung mass the 2nd week of April. This is the part where my mom and dad had to tell us something was going on. The prick hole wouldn't close right in the lung and they wanted to keep her overnight so my dad spilled the beans. She didn't want to worry us until she knew something. April 19th I went to the oncologist with my mom and dad. He said she was stage 4 NSCLC (didn't know what type). Said she had the primary tumor on her left lung which was causing the lung to partially collapse, there were 5 lesions/tumors on her liver (one was 4 cm), both femurs had cancer in the bone marrow, there were "spots" on her ribs, spine and at the base of her skull. He said she had less than 6 months if she did nothing but that chemo could give her some pain relief and more time. Needless to say, we were stunned. My mom had lost a lot of weight and had really bad back pain--she said she pulled a muscle, and had bad nausea. She decided to start the chemo 2 days later. She is set up to do chemo on day l and 8 of the month and start a new cycle on the 21st of each month. He said 6 cycles would be the most she could do and that would be mid August. She could not eat or even tolerate instant breakfast or ensure but could drink only fruit punch gaterade. I had to take her in for IV bags for the nausea because she tried 4 different nausea meds with no help. Today she saw the oncologist but would not let me or my dad go. He scheduled her for a CAT scan in 2 weeks. He was happy with her liver numbers but said her x-ray didn't show any difference but he said CAT scan shows differences much better. My mom has felt good the last 3 days and ate some and gotten out of her chair and seems in good spirits but she hasn't had chemo for a week. I just don't know what to think. Is it better that the cancer shows in the marrow but not the bone and is the likelihood of zapping it better? I am past the initial shock of the dx but I need someone to be frank with my because I want to know what I should be asking and looking for. I want to be supportive because my mom is my best friend but I also know what she considers to be quality of life. What do you think of the dx and any suggestions? Thank you in advance for taking the time to read/answer me! Trish

Hi--I hope you can help me! My mom was just dx 4-19-04 with stage 4 nonsmall cell lung cancer. She had breast cancer 5 years ago but doctor said this primary site a tumor in the left lung. Here is the situation. In February, my dad told mom to go get her cough checked out. An x-ray showed a mass so they did a bronch scope mid-March and said 1/4 of the left lung was collapsed. The tissue sample came back as noncancerous. They scheduled a pin-prick biopsy of the lung mass the 2nd week of April. This is the part where my mom and dad had to tell us something was going on. The prick hole wouldn't close right in the lung and they wanted to keep her overnight so my dad spilled the beans. She didn't want to worry us until she knew something. April 19th I went to the oncologist with my mom and dad. He said she was stage 4 NSCLC (didn't know what type). Said she had the primary tumor on her left lung which was causing the lung to partially collapse, there were 5 lesions/tumors on her liver (one was 4 cm), both femurs had cancer in the bone marrow, there were "spots" on her ribs, spine and at the base of her skull. He said she had less than 6 months if she did nothing but that chemo could give her some pain relief and more time. Needless to say, we were stunned. My mom had lost a lot of weight and had really bad back pain--she said she pulled a muscle, and had bad nausea. She decided to start the chemo 2 days later. She is set up to do chemo on day l and 8 of the month and start a new cycle on the 21st of each month. He said 6 cycles would be the most she could do and that would be mid August. She could not eat or even tolerate instant breakfast or ensure but could drink only fruit punch gaterade. I had to take her in for IV bags for the nausea because she tried 4 different nausea meds with no help. Today she saw the oncologist but would not let me or my dad go. He scheduled her for a CAT scan in 2 weeks. He was happy with her liver numbers but said her x-ray didn't show any difference but he said CAT scan shows differences much better. My mom has felt good the last 3 days and ate some and gotten out of her chair and seems in good spirits but she hasn't had chemo for a week. I just don't know what to think. Is it better that the cancer shows in the marrow but not the bone and is the likelihood of zapping it better? I am past the initial shock of the dx but I need someone to be frank with my because I want to know what I should be asking and looking for. I want to be supportive because my mom is my best friend but I also know what she considers to be quality of life. What do you think of the dx and any suggestions? Thank you in advance for taking the time to read/answer me! Trish