Leslie

Bobbi-- I know how you are feeling right now. My dad can barely talk too without having a major coughing spasm that leaves him completely out of breath. I sometimes feel bad calling because I know how hard it is for him to talk. You have been a wonderful source of strength and support for your sister. I have seen your posts and it is clear how much you love her. I am sending you strength. Best, Leslie

Friends, Thank you so much for your kind messages. They have literally helped keep me steady these past few very challenging days. Your wisdom and your compassion mean so much to me. I am trying hard to take it one moment at a time. Some moments are better than others. What a difficult journey this is. I am truly moved by your thoughtfulness. Thank you. Leslie

Forgive me for this post. I really wish I could be strong and positive tonight but I can't...I pretty much haven't stopped crying tonight. I feel like maybe if I write it down, I can get some relief. My dad is just not doing well. The fatigue is overwhelming. His appetite is not great. And he is getting weaker. He's been using a wheelchair whenever he goes out of the house. Today, my mom finally bought one for him. His blood test shows that his CEA level has increased from 74 to 406. While I know that only scans can show whether the cancer has progressed, I also know that elevated CEA levels are not a good sign. He will be scanned next week--and I'm pretty sure that if the cancer has progressed we will move on to Tarceva. But this will mean that we have moved on to our 3rd line of treatment in less than 6 months. My parents are the most important people in my life. To see what cancer is doing to our family just breaks my heart. Most of all, the thought of losing my dad makes me feel like I will suffocate. I am simply terrified to not have him here. My dad is the most gentle soul. He has a wonderful sense of humor. The world--my world-- is a far more beautiful and interesting place with him here. My dad makes everyone around him feel good about themselves. He has the most incredible way of helping people develop their ideas about the world, about themselves...he is a gifted teacher, a compassionate friend, an incredible spouse, and the most wonderful father. And I just can't bear the thought of being without him. We are living our worst nightmare. My dad can barely talk on the phone--or else he starts coughing uncontrollably. But I find I just need to hear his voice for a minute. Because he is still here. I am really not sure how do deal with this incredible pain. I have always been someone who can express my emotions. But this saddness is overwhelming. I apologize for the long post. I just needed to write it down and spend a moment where I know people will understand. All the very best, Leslie

It was about 6 weeks before my dad was scanned. The results of the first MRI showed some Mets had disappeared and other were stable. Second MRI showed that the mets were stable. It takes a little while for those damn mets to go away... Leslie

Hi-- My dad doesn't have Squanomous Cell--but upon diagnosis of his Stage IV NSCLC, we found out that he had brain mets. Actually, 7 of them. He's had WBR and Sterostatic radiation to get rid of the mets. That was 6 months ago. Since then, some of the mets are gone and others are stable. We pray that it stays that way. I know how scary it is to hear about brain mets...but please don't lose hope. They are treatable. In strength, Leslie

Hi Sloanie-- I'm Adrian's sister and I wanted to add a welcome. You have come to the right place...I'm not sure how we would survive all of this if not for this board... I think Adrian's explanation covered most of it...but just to add, part of the reason that they won't radiate the spine unless the tumor is causing pain, is because there is a limited amount of radiation that the body can handle...so they usually wait to radiate until there really is no other alternative and they use chemo instead. In the meantime, definitely check out the Zometa to strengthen the bones. Sending you strength, Leslie

Ned-- As always, your words inspire and provide a moment of calm. Thank you. Congratulations on one year...you are truly a peaceful warrior. Best, Leslie

Rachel-- Though I am a caregiver and not a survivor, I certainly relate to your feelings of anger. I walk around and watch children with their grandparents and realize that my dad may never meet his grandchildren. I am so angry that this happened to my family...that this could have happened to my wonderful dad... I often want to write about it...but feel badly that this is the emotion that I feel...somehow sadness and tears seem more manageable...the anger feels a little more out of control. Thanks for your post. I hope today is a day of peace for you. Best, Leslie

Bam-- You have many options remaining after Alimta. You can try Tarceva or Taxotere or can do a clinical trial...and I know that even more options exist after that. Your mom is a fighter...she will get through this. In strength, Leslie

Ned, Welthy, Don, VegasMomof 3, Randy, Ry, Susan, Jackie (I hope I didn't miss anyone)-- Thanks for all of your thoughts. My dad saw his onc. yesterday and--it looks like it is not the thyroid causing the trouble. He is just really getting hit hard by the Alimta. (As you noted Ned, he seems to just be one of those people that really gets hit hard by certain medications...) We have asked the doctor for a prescription for Provigel and we are hoping that brings some relief for the fatigue. We had a bit of a scare yesterday--as my dad passed out and fell on his way into the oncologist office. However, he had an MRI and the results show that he is stable. (Finally, some good news during this incredibly hard week.) He is not on oxygen as he has not had shortness of breath and his red blood cell count is okay. Thanks for sharing your experiences. We have delayed chemo this week and are hoping he is better and ready to go for chemo next Friday. Wishing you all the very best, Leslie

Bam451-- My dad is on Alimta/Avastin as well and after only one round of chemo, has had exactly the same level of fatigue that your mom is experiencing. We have been looking at everything possible as an explanation for the overwhelming fatigue--thyroid, pain meds, etc. But it looks like it may just be the chemo that is hitting him hard. Yesterday, we went to the oncologist and he prescribed Provigel (although after reading Rich's post we may see if we can switch it to Concerta). So we will see if that helps at all. We may also be looking at radiation to the rib cage--as my dad, like your mom, has a met there that is causing a lot of pain. Wish I could be more helpful. I know how incredibly distressing it is to witness all of this without being able to have a surefire way to make it all better. I wish I had the answer for both of our parents! I hope today is a better day for you and your mom. Leslie

Hi all-- Ry & Jackie--Thanks for sharing your experiences. I remember hearing that Alimta could be tough...and that Zometa can cause pain... Randy--He got a B12 shot last time--but apparently, they can only do it once a month so he won't get it this time. I will ask the onc. about the potassium. It looks like chemo is going to be cancelled today to see if my dad can get a little strength. We are starting to focus on the fact that he showed signs of hypothyroidism (low T3 counts). Has anyone had experience with slight hypothyroidism causing extremem fatigue? Thank you so much for all of your help. Best, Leslie

Hi-- Raney--Thanks for those great thoughts. He had his counts tested two days ago. Red blood cell count looked good. White blood cell count was a little low--but likely caused by the steroids. He does seem to improve, as you suggested, when he moves a little bit (e.g. gets dressed and walks to the car). However, he is very resistant to any activity right now. And today, he can barely get dressed...Please keep the brainstorms coming. We are at a loss too. Susan--Many, many thanks for your support. Leslie

All-- I desperately need your collective wisdom. As many of you know, my dad was diagnosed in April with Stage IV. He was on Carboplatin/Gemzar/Avastin. After three rounds, it was found that the cancer had progressed and there were new mets on the ribs, femur, and spine and a small met on the liver. (There was some shrinkage in the lungs.) Two weeks ago, my dad had his first infusion of Alimta/Avastin. He was okay for the first week and managed to do some activity. However, he has developed a terrible, terrible cough and for the past week, he has had horrible fatigue. He can barely get out of bed in the morning. He keeps his eyes closed for most of the time when he talks. He says that he is feeling terrible. At the moment, he is on antibiotic for the cough. He takes some medication to prevent acid reflux. At various points (e.g. before and after chemo), he takes decadron and he recently tokk predisnone for three days (but he finished the dosage yesterday--so he will go back to decadron). He has also been taking hydrocodone continuously (almost since diagnosis) for the cough. His doctor says that his T3 count is a little low but doesn't think that is the problem. Can anyone give us some thoughts on what we can do to relieve the fatigue? We are getting very scared that he is so weak and feels so terrible. Our onc. says he will cancel chemo tomorrow if the fatigue doesn't improve. Thank you in advance for your help. We are scared. Leslie

Ry-- Does John experience fatigue with the codeine? As Adrian said, my dad has been taking hydrocodone for some time...and has recently been experiencing tremendous fatigue... Before we move on to something else, I just want to be sure that we don't do anything to increase his fatigue further... Best, Leslie

Hi all-- My dad had one Alimta/Avastin treatment about two weeks ago. Over the past few days, we've noticed that his cough is getting worse. He's had a cough since he was diagnosed with cancer but it seems to be sharper later. Anyone had an experience with a worsening cough while on Alimta? Any thoughts on what to do to make it better? We've tried Tesalon pearls, codeine, tea....nothing is working... Thanks as always, Leslie

Jill-- I just want you to know that I am thinking about you and your mom today. I can imagine how unbelievably scary it all seems right now--and you are being so incredibly strong. Take it one moment at a time. Stay in the present. Your mom is here and she is still fighting. As you know, there are many, many people who are still posting on this board who have had very scary times--and they pull through. I am sending you strength and positive thoughts. Best, Leslie

My dad has gone swimming with his port. It has not been a problem...One thing to bear in mind though: if your mom is using a public pool, she should probably be careful a few days after chemo when her immunity is at its lowest... Glad to hear your mom is feeling strong enough to swim. Best, Leslie

Jill-- Looks like you've gotten plenty of support--but just wanted to say that I completely relate to so much of what you have said here. I too can get to such a dark place--sometimes, I find myself feeling so overwhelmed with anger that this has happened to us...and other times I am just flooded with sadness and fear that I am going to lose my dad. And then, there is the simple grieving for my old life, and for the future, for the fact that my dad may never get to meet his grandchildren...for my husband and I, that we have had to deal with all of this in our first year of marriage and it is so damn hard. As you can see, my pity parties can really get going some days. On the other hand, I am a different person because of this and I also feel more compassionate/less judgemental of people...because you really never know what people are going through. And I am so grateful for the times that people are gentle and compassionate towards me during this period... So, just to say, I really feel where you are coming from...and I thank you for putting it out there....because it is good to know that I'm not alone. May you have eaiser days ahead. Best, Leslie

Just wanted to say thanks to everyone for responding. The pain seems to have diminished somewhat...My dad's oncologist is on vacation and gets back on Tuesday...I can hardly wait for him to get home. We find out the results of the PET scan this week. Please, please keep your fingers crossed for us...we need some positive thoughts coming our way! Best, Leslie

Hi all-- The night before last, my dad awoke at 4:30 am with pain across his upper chest. He says it felt like "someone pressing on a bruise in his chest" and he described it as a "deep throbbing ache" that pulsates with his heart. He says it radiates down to his lower back. After getting up to read about symptoms of a heart attack online, he decided he was not having a heart attack and managed to go back to sleep. He says he has had variations of this type of pain before but it was mainly in his lower back. This was the first time he had pain of this intensity and for this duration--and the first time the pain was in his chest. Yesterday, after much convincing, he went to the ER. He was still having episodes of the pain--but now it is more sparodic. After several tests (including a CT scan), they ruled out heart problems and they ruled out blood clots. Nevertheless, the episodes of pain continues. Anyone have similar experiences? He is supposed to have his first PET scan today to see what effect the chemo is having. I am terrified that this could be a bone met on his spine that is causing pain to radiate to his chest.... Please let me know if you have had any experience with pain similar to this. Thank you, as always, for you thoughts. Leslie

Jen-- I really relate to your post in so many ways. I feel guilty posting here--because my dad is alive and he is in Round 3 of first line chemo. But I find myself feeling very similarly to you today... I am just so sad today. I am sad that he is so fatigued that he could barely make it out of bed. I am sad that on days like today--he is a shell of himself and I miss him. His humor, his quiet energy...his loveliness, his strength. And I find myself grieving right now....that he may never meet his grandchildren, that my mom will be alone...and it seems so unfair. He took good care of himself. This wasn't supposed to happen. And I find myself grieving the loss of control I feel over my life. I used to think that you could control certain things--you eat well, you exercise, you control your stress, you act decently in the world--and you don't get cancer. So, I miss my old, naive, innocent views...I miss feeling like the universe was a special place and that I was lucky to be here. Now, I feel like the world and life can be so harsh... So, I am really grieving too. The only thing I can think of is that these feelings pass....and good waves will come again. In solidarity, Leslie

Teri-- It is funny to come across your post today because I've been thinking about similar issues in my family as well and what will happen to us if we lose my dad. I have a brother and two cousins that I'm close with. In many ways, my dad filled the role of dad for them (their dad is a complicated man--and they've never been close). We are all in our 30s and starting families of our own...so in some ways, the logistics of coming together each year for Thanksgiving and Passover would have been complicated no matter what. But I have great fears that this distance will all be exacerbated if my dad is not around...and I've been feeling so sad about all of this today. The conclusion that I've come to today is that family doesn't just happen--you make it happen. And if I want the connection to stay with my cousins and with our family, then I will have to put the effort in--calling regularly, making an effort to get together...to make it be what I want it to. It may never be what is was like before--but something new and good may come of it all. I have to believe that. From everything you shared in your post, I think your efforts to remain connected will be well worth it. And my sense, (speaking as a the child of a parent with cancer), is that anything you have of Bill's--other people's reflections, his posessions--will be something they would very much appreciate. I know I would. Please stay strong, Leslie

Hi all, Next Thursday, my dad has his first CAT scan since starting chemo. In a fit of scanxiety, I decided to read his full diagnostic report for the first time. I never had read it before because I thought it would be too upsetting. Well, I was right...for the first time, I saw that the report said that when he was initially diagnosed, they found "hypodensities on the liver" too small to be picked up by a PET scan. What does that mean exactly? That the cancer had already spread to the liver? Did anyone else have this? Was it resolved by the chemo? In my effort to prepare myself, I think I may have scared myself again. Thanks for your help, Leslie

Hi Barb, I'm Adrian's sister, Leslie...I'm really sorry to hear that you are going through this. As Adrian mentioned, this has been a real struggle for us with our dad as well...(also a non-smoker and all-around healthy guy, except for cancer)... In addition to Ensure, we found that having him keep a log of what he was eating and when he was eating it also helped....somehow, seeing how little he was eating on paper seemed to help a little...we also numbered his bottles of water--so he knew exactly how much he was drinking each day. I think it also helped to talk about expectations for eating during chemo...We had to clarify what we meant by "Do you want something to eat?"...We know that his appetite is gone and thus, his answer was always going to be "No." We had to explain that what we meant is "Is it physically possible for you to eat something at this time?" And if the answer is "yes"--then, we need him to eat...He needed to understand that his body's physical cues--the ones that he has always relied on for his survival--were no longer working...and so, whenever possible, he had to override the impulse not to eat...and eat. We also kept the house stocked with ice-cream and other snacks. His willingness to eat particular foods changed on a daily basis---one day ice cream was okay and the next day it wasn't...so we had to keep the house stocked with a variety of things. Keep us posted...I know how hard and frustrating this is... Best, Leslie