curlysue50

I forgot to include a pic from Dylan's party! Sent from my SCH-I405 using Tapatalk 2

I am sorry to hear your mom's brain tumors have recurred. Do you know if they were considered metastases from her lung cancer or if they were unrelated brain cancer? My understanding, from my own situation, is that once the cancer spreads outside of the original tumor, is that there are cells in that new location that can grow. In metastatic spread, the cancer cells are spread through the blood stream to new locations. In my case I have spread to bones, brain, adrenal gland, liver and the second lung. My treatment has been able to shrink tumors in all those areas and except the liver and the lower left lobe of my lung. They consider those areas scar tisue. I guess it is important to find out what stage your mom's cancer is at. If it is stage 4, it is not curable, but can be treated as a chronic condition. I have been treating my cancer for over one year now and am doing very well. People can live for many years with stage 4 cancer. They are usually monitored closely and will usually be undergoing some sort of treatment during those years. Also, I can't remember if you mentioned what type of lung cancer your mom has. I have non small cell lung cancer (NSCLC) adenocarcinoma. When I went to my oncologist, I had him write things down for me. I did not know what all the terms meant, or how they would affect my treatment. It took awhile, but the more I learned, the more managable it all seemed. It is important to get all the information you can and be sure your mom gets the correct treatment for her condition. Things can seem pretty scary when you are not sure what is happening. When you get the information you need to find out what is really going on, you can focus on your treatment plan, and how you can best support your mom through it. I know it can be intimidating to ask the doctors questions, but the more you know, the better you will be able to support your mom. It is natural to be afraid, but as you see the stories of hope on this forum, there are many others going through similar situations. You might want to try posting in some of the other forums to get some new perspectives: Lung cancer survivors, the General forum. Survivor stories. There are always good stories in the good news forum and the Just for Fun forum has positive news from the daily lives of those of us surviving lung cancer or someone who loves someone with lung cancer. It will help you believe that life can go on and you can have joy in your life, even while facing down this disease. Focus on what you can do, not what is out of your control. Love your mom and be strong for her. When YOU need support come here and we will support and encourage you the best we can. You are not alone. (((HUGS))) Susan Sent from my SCH-I405 using Tapatalk 2

Trying out the new mobile app! This is great Katie! I use my phone for most of my posting, so this will really work great for me. Swimming for me today and then trying to do some more decluttering of my house. I got my Halloween sorted and distributed to my daughters. It feels good to get something accomplished. I was wondering if I had lost my mind when I saw all that stuff all over my counter! I did keep a very few things for me. Mailed a box to Alison in Columbus and took Melissa's box to my grandson's party last night. I could tell she was excited to get the Halloween things because she started pulling things out of the box, on the spot. She said Halloween is her favorite holiday. Wonder how she go that? I am sure she will remember many of the decorations. Dylan's party was fun. We all wore party hats and he tried not to smile while we sang "Happy Birthday". He is a little tough guy and does not want you to know he is having too much fun sometimes. He was having a great time and so did we. Well cool and sunshine again today. I could get used to this. Fall is such a short season before we blow into Winter here in Michigan. We got spoiled last winter with almost no snow at all. We will probably get buried this year. Time will tell. Hope you all have a great day! Thank you, again Katie for the mobile app! Susan

Eric: I did look into yoga, but my orthopedic oncologist said "no". I have some compressed discs in my spine and quite a bit of damage from metastases spread in the vertabrae and ribs. So, for now I will enjoy the warm temps and low impact, healing waters of the excercise pool. Sometimes you can only do what you can do. It gets me out 3 days a week and the others in the pool for health reasons look at my smiling face and tell me I don't look like I have cancer. (That is when we get into the inevitable "health" conversations old folks have). I have been told I am the "youngster" of the excercise pool group! Susan

Bruce, I just told my husband yesterday that we need to get the furnace cleaned and check the level of the propane in the tank. I see some overnight temps predicted for the 30's later this week. Also looking at getting my heated mattress pad on the bed and ready to have my sheets warm and toasty at bedtime. I also picked a nice bunch of heirloom tomatoes from my small garden and am planning a Savory Tomato Bread pudding for dinner. Good day to have something warm and fragrant baking in the oven. I am getting excited to go to my grandson's 5 year birthday party tonight. It seems like just a blink of an eye since I was there at his birth. My daughter was pregnant at 17 and at the time, it was pretty stressful. Now looking back I am so grateful I have had the experience of a grandchild. My 28 year old daughter is not sure she wants kids, so I take my blessings while I can. Sometimes in life we just need to appreciate every moment and stop trying to control what we think should not be happening. Not an easy thing to do sometimes, but if you can trust that everything happens for a reason, it makes it easier. I hope everyone has a wonderful day! Even though it is cool, the sun is shining. Susan

Sue: My condolences to you and your family. Much love and support is being sent your way. Your mom was fortunate to have so much love around her during her last days. Hugs to you. Susan

My daughter, Alison, has her birthday on 10/17, so her birthday party favors, candy, decorations always had a Halloween theme in there somewhere. My first Pomeranian, Teddy, was orange and was born on Halloween....maybe that is where my love of Halloween started. Plus, Halloween has all the fun of decorations, pumpkin carving, cool nights, costumes and candy with none of the stress of the other holidays like cooking a big meal, present buying, and house guests! HaHa! There were special needs kids in the pool while I was there today. It really made me count my blessings and give a special thank you for the teachers who had such love and patience for the kids. You could see the kids really loved being in the water! Susan

Sounds like you have a positive, realistic attitude and love your husband very much. It is hard to feel you can't control the situation. All you can control is how YOU deal with it and be there to support you husbands decisions. This is easier said than done. I know that from experience. Come here for support, to vent, or ask for encouragement. There are many wonderful people here from many different circumstances. What we all have in comon is that our lives have been touched by lung cancer. Whatever your husband decides, you won't be alone. That is what this support community is all about. Hugs to you and good thoughts as your husband makes his decisions. Susan

It is a sunny, cool morning and I have been sorting out my fall and Halloween decorations. I happen to love Halloween decor and my intention was to divide them up for my daughters. But, I had forgotten what great things I had packed away! So, I am going to keep some of the most fun things for myself. I will thin down the collection a little, but I don't need an excuse to go out and buy more next year! It has been so long since I have had some things out that I had forgotten I had them. Great thing about getting older is that things from the past can become NEW to you again. My husband and I watched a movie a couple of weeks ago that we had seen about 10 years ago. Neither of us could remember how it ended or even much of the plot. Way to recycle movies! I am going to try to get out to the pool at noon today and enjoy the warm water in contrast to the cool air outside. Hope everyone else has a lovely day! Dogs are both napping, so time to try to eat a little breakfast. They have pretty good noses, so they will probably be at my feet as soon as the toaster starts heating up. Susan

Be Bailey is a Pomeranian. He weighs just over 2 lbs and will probably be 7-8 lbs full grown. Not sure if color will stay the same. My 10 year old Pom was more white as a baby, but got creamier as she has gotten older. I will post her picture, too. Bailey is my 4th Pomeranian and I love the personality of the breed. It is amazing ho lucky I have been picking my loving dogs. They add a lot to my life. I am grateful to feel at this point that I am well enough to handle the challenges and time it takes to love and train a puppy. Susan

I have a wonderful oncologist and when I asked him on my first visit how long I had to live he told me every person is and individual and he could not know how my body would respond to treatment. I had traditional infusion chemo first and we got short-lived stability but no shrinkage. Cancer started growing again during my off treatment time last holiday season. So, my oncologist did genetic testing and I found I had the ALK translocation and would qualify to taked a genetically targeted therapy that had just been FDA approved outside of clinical trials. It is working for me. My left lung which was collapsed with tumor and bronchus are both open and functioning again. When I started my treatment this drug was not available to me. I have great trust and respect for my oncologist. If you are questioning your doctor it is okay to speak up, ask questions and if you can't get satisfaction seek another opinion or change doctors. My onc is very accessible to me. He said he would rather have me ask and as the doctor he can decide if my concern is significant or nothing to worry about. As far as your husbands unhealthy habits, that can be tough. Only he can make a decision to change. I struggle with healthy eating habits, but have found I like to "swim" a bit and joined a pool for exercise. We all do the best we can. Just because we have cancer doesn't mean the other struggles we have had in our lives disappear. They just seem less significant when we get our cancer diagnosis. Be encouraging and love your husband. He will work things out the best he is able and will need your love and support. My thoughts will be with you and come here often for support. I don't have all the answers. I can just share my experiences and hopes for you and you husband

I am a day behind and just posted an awake picture on Monday's air, so I will post a sleeping picture here. Bailey almost matches my 10 year old Pom. My daughter says when I take a picture of them together it looks like one dog with 2 heads! I was a little afraid of how the older dog would accept the baby, but she is already "mothering" him and he bitesher, pulls her tail and she puts up with quite a bit. I even saw her cleaning up his face (and eating his Puppy Chow!) Susan

This is little Bailey on the day we picked him up!

I have not had radiation myself, just chemo, but I agree with Katie to be sure to let your mom's doctor know of all her symptoms. Cancer treatment is stressful no matter what type it is and this is tiring both mentally and physically. I have a friend who went through radiation and she found it very fatiguing. Be there for your mom and try to see that she gets as much rest and as little stress as possible. If you get too worried before her next appt, you can always have yourself or your dad make a call to the doctor's office to ease your mind, and to be sure what is happening is what they would expect. My doctor is used to hearing from me and told me it is never a "bother" when I call because the patients are the reason for his job. Best wishes Susan

I remember when I first discovered this site I wondered what I was going to do with all my free time. Eric suggested I find some relaxing and exercise activities. At the time I was just beginning to recover with the benefit of my current chemotherapy. Now I have gotten a pool membership and have been going 3 times a week for about a month now. I "move" in the warm excercise pool. Swim my form of "laps" with the help of a swim noodle, and spend 45 minutes exercising my muscles. I have even met some other "older folks" like me who appreciate the 95 degree water on achey muscles and joints. I am finding my new normal. I am not as busy as Eric, but he had a head start on recovery! I also got an 8 week old Pomeranian puppy and that is keeping me busy too! Hope everyone else is well and keeping busy! Susan

I have non small cell lung cancer and am not as familiar with small cell lung cancer. I can relate to how you must feel not knowing what is going to happen. It has been a bit since you posted, so hopefully you are meeting with your mom's doctors and are closer to a plan for treatment. She is lucky to have such a caring daughter. I have stage 4 NSCLC and am a one year survivor. I was very blessed to have found a treatment that is working for me. It was not the first treatment we tried. Ask your mom's doctor's questions, come here for support for yourself. It can be a very scary time, but you don't have to go through it alone. Please keep us updated on your mom's progress and my thoughts will be with you. Susan

Steve: I am sorry to hear of your diagnosis, but so happy to hear you are getting a good response to the Xalkori. I am also stage 4 NSCLC adenocarcinoma with mets to brain, bones, liver and adrenal gland. I was diagnosed August 9th 2011. I did traditional chemo fall 2011 and when we only got stability and no shrinkage of tumors my oncologist did the genetic testing for ALK translocation. He called me at home and I was really anxious to hear what he had to say. Two of my sisters have worked for Pfizer and knew how successful Xalkori had been in clinical trials for ALK patients. My oncologist said, "Mrs Gamble, I have some very good news for you, your test came back positive for the ALK mutation." It was the first good news I had had in awhile, because I was very, very sick before I was finally diagnosed. That also meant the spread of the cancer was very extensive. Since I started on Xalkori mid January 2012, my collapsed left lung has reinflated and is functioning except for a small area of scar tissue in lower left lobe, nodes in right lung are gone, many areas of lymph node involvement have cleared, adrenal tumor is gone, liver tumors are stable and some of my bone mets are trying to fill in and heal. I still have a small amount of pleural effusion in lower left lung, but it has been greatly reduced. I have stopped vomiting multiple times daily. That was such a relief that I marked it on my calendar for 2 weeks before I realized that this was an improvement that was going to stick! I also had problems with blood clots. I had 9 in my left leg alone the day I went for my first chemo infusion. The tech stopped counting at 9 and I now take daily Luvenox injections which is a blood thinner. So far I have not had any complications with that or any more blood clots. I have been very blessed. I found this site after I had been through some of the worse physical effects of my cancer, but there have been many emotional and practical aspects of dealing with stage 4 cancer from dealing with specific symptoms to wondering where I fit into the world now...I had worked full time for years and am now home and not able to work. There are many great people here. Their lives have all been touched by lung cancer. They get it. They understand. They do not judge. We are all here to listen, to support and help in any way we can. You are in the right place. You sound like you have a great attitude. I try to keep positive too. But I do have days that seem like they are more than I can handle sometimes. This is the place I express my fears, my small (and large) victories, my questions and ask for advice. To be reminded I am not alone in this. Welcome. Susan

This site is a wonderful source of support for myself and many others surviving lung cancer. It means many different things to many people and we all contribute in our own ways. We each make a difference. Susan

George: This site is for anyone dealing with lung cancer. It comes in many forms. If you are looking for medical advice you might want to look at some of the more specific types sites. If you are looking for support as you face this devastating diagnosis there is much of that here. I have NSCLC adenocarcinoma. Stage 4. Spread to bones, brain, adrenal gland and liver. I had 4 rounds of traditional infusion chemotherapy which brought a very short-lived stability.(less than 3 months). I was fortunate to have an ALK translocation which can be treated with a genetically targeted drug. In. Other words, only the mutant cancer cells are killed by the drug. Not my healthy cells. I have had a very good response to that treatment and one year after my diagnosis I am stable and much of the cancer is gone or left as scar tissue. My bones are still damaged. When cancer is in the bones it eats it away and weakens it. At least in my case that is what happened. Some of that bone is trying to fill in and heal. Eventually the cancer will figure a way to grow in spite of treatment, but until then, I am trying to live life the best I can. I have started swiming and just attended my oldest daughters wedding 350 miles away. If you need specific advice check out some of the medical sites. If you want to talk about how lung cancer is impacting your life and how others have had to deal, please stay here and support all of us who are living and surviving this disease. Susan

Maria: Good luck with you conference with your dad's oncologist. I am not sure if your dad has had genetic testing, but the Tarceva is a genetically targeted therapy that is oral pills as opposed to infusion. I started on Xalkori in January of this year. I have the ALK translocation and Xalkori is targeted specifically for that mutation. I began to see results in 2 weeks. My collapsed lung reopened, my adrenal tumor disappeared, the cancer nodes in my other lung are gone and my liver and bone metatases are stable. There are even some signs of healing in the bones. Not everyone gets such good results, but if your dad does have the EGFR mutation, the Tarceva is targeted specifically for that mutation. My side effects from Xalkori have been minimal and I also had carboplatin and pacitaxel with terrible side effects with those infusions. The advantage to targeted therapy, when it works, is that it does not destroy healthy cells, just the mutated cancer cells. Ask lots of questions and I am sure you will make the right decision for your dad. I was very discouraged when infusion therapy did not reduce my cancer tumors, but now am doing very well. I have stage 4 adenocarcinoma, very advanced spread, so I feel very blessed to have found a treatment which can't cure me, but is giving me more quality time. I hope you can choose a treatment that will be as effective for your dad! Susan

I have been out quite a bit lately, so I am staying home to rest up a bit. We went to our cottage and I brought more things home to sort and disperse. It will have to be sold eventually, so any cleaning out I do now will be less to take care of later. It is hard to let go of some things. When you have a lung cancer diagnosis it seems you are forced to let go of a lot of things at once. That can be very challenging emotionally. My daughter gets married in 9 days down in Columbus, OH. I have been feeling a little draggy and hope I perk up by then. It is a 5 hour drive for us and we will have my youngest daughter and grandson with us too. My "cancer health" is stable right, just some of my normal health issues are bothersome. Life goes on. Sun is shining. About 72 degrees. No air conditioning, fans are doing the trick. You can begin to feel fall in the air as September creeps closer. Susan

I try to remember to post both here and on Facebook. I use Facebook quite a bit, but not everyone does. I figured I could not "overshare" this good news. The 8 week wait was long, but worth the results! I have already thought about Hope Summit 2013! My first goal of surviving to my daughter's wedding September 1st is almost here. Hope Summit can be my next goal! Susan

Dani: Reading your profile and wondering when you were told you are stage IV. Did the biopsy of brain tumor show it was a metastases from the lung tumor? Did they do a PET or MRI before your lung surgery? When they found my lung cancer they did full scans to see if where I had spread. I guess they could see bone mets when they did x-ray, so knew at that point there were mets. It is a good sign that they don't see more tumors, but if they are telling you it is stage IV, that does mean cancer cells from your primary tumor have spread through your bloodstream to another area of your body (your brain tumor), if I am understanding your explanations correctly. I am sorry you have had to endure 2 surgeries. Do you feel comfortable talking to your oncologist? I would let him know how you are feeling. Like you need time to heal. I know when I was going through chemo I attributed how bad I was feeling to the chemo. Actually looking back, some of it was from the effects of the cancer on my body. Be sure to let your oncologist know all your symptoms of pain and fatigue. All that is concerning to you. It is hard to go through cancer. I felt as if the life was slipping out of me. But, I took my onc's advise and am now on a treatment that is working for now. Do the best you can each day. Don't give up, even when it seems impossible and hard. You are stronger than you know. Thinking of you. Worried about you. You are not alone. Susan

I trusted my oncologist and started chemo when he suggested. He let me make the decision to take a 90 day break after chemo only stabilized tumors and did not shrink them. Almost immediantly the cancer started to grow again. I had forgotten what normal felt like and thought I was still having side effects. I did not call my doctor for about 10 weeks and ended up in ER. I was fortunate to have the ALK mutation and Xalkori, the genetically targeted therapy for that mutation was now available outside of clinical trials! And it is working! I am also stage 4 and will always be in some sort of treatment. Once cancer is spreading all through your body, it is more difficult to completly eliminate it. It is treated as a chronic ilness. Listen to your oncologist and make your decision. My experience tells me that my oncologists has more experience with treating cancer than I do. I wish you the best and whatever you decide will be right for you. I can only share my story. If it was me, I would not want to allow the cancer any more time to spread and damage your body. You will be in my thoughts and prayers. I know how hard it is to make decisions when your body and mind are fatigued. Do your best and never give up hope. Susan

I went for my CT scans yesterday to look into the question of more cancer spread in my liver. Did not know if it was due to actual spread or if it was due to the last full scan being dated back to last October. (Recent scans were chest only, not abdomen). I am going in for oncology appt on Friday and was supposed to get results then. My scan was at 10 am. At 1:15 pm I had a message on my cell phone to call my onc's assistant. She said she had good news that she did not want me to wait until Friday to hear. When I called her back she told me my scans from 8 weeks ago and the ones on Monday were almost identical. Only difference they noted was that when they compared to November scans, that there is some healing going on in the bone mets! I was so happy! In cancer treatment you don't always hear the words "we have good news for you". So when you hear them, no matter how simple the situation, it is like receiving a precious gift. It is the precious gift of more life, more time. Truly grateful today. I am starting to become a bit more of a believer in the power of HOPE! And the even more powerful effect of the support of other survivors. Susan