Loading...

Llane's Message Board Messages

Loading...
Showing 1 - 10 of 12

Page 1 of 2

Dear Sandi, Thanks for staying in touch. I'm not sure what could be going on with your father. In my Dad's case, when he wasn't able to urinate, it was because of the tumor and they eventually removed the bladder. Everybody's situation is different. I wish I could offer you some helpful information. You, like me, are so fortunate to have such a great relationship with your dad. I'm sure he treasures your love and caring every single day. When I was going through my journey, I became so obsessed with finding a "cure" that now I wish I had faced things a little more head on instead of letting my fear of the inevitable drive me into this insatiable quest for a cure. For my Dad, it didn't exist. His had already spread too much by the time we realized how bad it was. We both didn't want to really face it as "strong" as we were. Because he relied on me to seek out new treatments it put a huge burden on me to make decisions. He didn't mean to do that to me. I took it upon myself because he wouldn't have looked outside the box. Sandi, there are so many different facets to it all for everyone. My deal with my Dad is different than anyone's but the common denominator is the fear we feel about possibly losing our loved one and the profound sense of helplessness. Just keep loving him as you are and if he's willing, seek out other treatment options if this chemo regimen isn't working. Remember, the chemo only has an impact for so long on this particular disease. Please let me know how things are going. You are in my thoughts and prayers. And never forget, you're never alone. Warmly, Lyn
Dear Sandi, Thanks for your e-mail. Please keep me posted with your father's progress. One of the things that keeps me going is being able to shed a little light on this horrible disease for folks who need a little helping hand. I know my father would want that. He used to be such a source of comfort, strength and inspiration for people going through treatment. It was so touching to see him give people support when he was having such a challenging time. So I'm trying to keep his memory alive by sharing the knowledge and experience I've gained. Please let me know if there is anything I can do. Take care Sandi. Warmest, caring thoughts, Lyn
Dear Sandi, It was hard to read on your e-mail if your Dad's White Blood Count is .7 or 7? Even if it's 7, that's really low. It's amazing he's not completely wiped out. It usually takes a few days to a week to get back to the "normal" range. Does your father still have his bladder or was it removed? If he doesn't have many spots on his liver and they are small, you may want to check into Radio Frequency Ablation to see if he would be a candidate for it. They are using this novel procedure more and more for various cancers but it was pioneered in liver cancer. By the time the cancer reached my father's liver, the tumors were too large and widespread. I'm not sure if you know much about the nature of small cell cancer but it is difficult to treat because of the type cell. It can travel anywhere in the body and be very aggresive. The type of tumor is almost like a clump of jello. If you were to ablate a tumor, it could easily spread because it would be like dropping a stone on a clump of jello. It could splatter. Sorry it's a rather bad description of it but hopefully you can visualize it. It's worth checking out anyway because I know they said to me that if the tumors had been smaller, maybe it would have helped. It wouldn't have cured him but bought him more time. Sandi, I know this whole journey is an extremely frightening one with lots of ups and downs. It's so hard to stay strong and be proactice for your Dad and take care of yourself. With all the research I had done for my Dad, the one common denominator that I found out is that it is imperative to keep his immune system strong during and after chemo. He needs all his defenses to fight his cancer. Chemo will wipe out the good cells along with the bad. Make sure he gets at least 64 ounces of fluid a day to stay hydrated. The chemo is toxic and it needs to be flushed out. Eating lots of protein and raw fruits and vegatables are great. It's amazing to find out the difference between doing juicing and buying juice in a bottle at the store. With juicing, your getting pure enzymes and with anything store bought, it's been so processed that the enzymes are pretty much gone. The enzymes will actually strip the coating of the cancer cell allowing chemo and other good nutrients to get in there and kill the cancer. I hope this info helps. May God bless you and your Dad in this challenge ahead. Be strong. I know more than anyone what's it like to have your Dad who's your best friend go through this. Let me know if I can help in any way. Warmest thoughts, Lyn
Dear Callene, I wish I had some words of comfort for you and your family. From all of my research during my Dad's illness, I realized that his type of cancer was very, very difficult to treat and because it was small cell bladder cancer which is so rare, they hadn't done much research to offer him any other options besides chemo. He did try some alternative stuff. He went to a naturopath and went on a strict regimen of about 60 pills a day and essiac tea. I think it helped his immune system for a while but during this time he was also undergoing chemo. The idea was to keep him as strong as possible going through the chemo. Some people have had major success just doing the alternative regimen instead of chemo and radiation because chemotherapy just wipes out the immune system and makes you weaker and weaker. In my father's case we had two things against us. By the time we went to a naturopath, his cancer had already spread to his lungs. With small cell, that's a terrible sign because it means that it's elsewhere in the body. It may not show on a CT-Scan because the cells are so microscopic. The other thing is that small cell cancer is so aggresive and spreads quickly. His bladder was removed and we thought things were looking good but as a "just in case they didn't get it all" he had four cycles of the gold standard chemo. Four months later, it had come back in his lungs. Now, he's already had the gold standard chemo, which means any other chemo won't be as effective. Every time a different chemo is tried, it's effectiveness becomes less and less. Even though we knew it was all a crapshoot, we didn't want to face the inevitable. He went on two other chemo regimens. The first one gave him the most shrinkage but that only lasted four months or so. The next chemo gave him terrible neuropathy and didn't help the cancer at all. A few months later, it spread to the liver and after that my father had about six months left to live. During that time, we went to the Burzynksi Clinic in Texas. We thought about MD Anderson but I looked into it and they didn't have anything to offer besides having more chemo. There were no clinical trials. We gave the Burzynski Clinic a try hoping for a miracle. Unfortunately, during our month long visit, his cancer got worse. I won't bore you with all the details, but the bottom line was he was slipping away and of course, we still didn't want to face it. He went on radiation for a month and a helf because the tumors were so big in his lungs, he could hardly breathe. The radiation helped but there wasn't anything we could do for the liver. If it was a different type of cancer he might have been able to have radiofrequency ablation but with small cell it wouldn't have worked. His liver started to fail and he could hardly eat and got weaker and weaker. When my father's cancer spread to his lungs, I overheard him ask his doctor in Boston how much longer he had. I thought I'd collapse on the floor because he said six months to a year. My father never told my mother or I but of course I knew. He lasted eighteen months. When he was hospitalized near the end of his life, he asked how much longer. The doctor said a week and exactly a week later he died. If there is any hope, personally I don't believe a doctor should give a time frame because you never ever know. I read story after story and had spoken to people who had beaten the odds for years. But because of the nature of small cell bladder cancer, it's pretty bleak especially if it's spread beyond the bladder. I don't mean to sound so grim but my father was such a fighter and had such a positive attitude. I truly believed because of his fighting spirit, he had a good chance of being around a much longer time. Because your mother-in-law has already been on chemo and because of the nature of her cancer, I don't think MD Anderson can help at this time. If I had to go through all of this with my father from day one, knowing what I know now, I would have gone to MD Anderson right away and had his bladder removed there. We talked to ONE cancer survivor with small cell bladder cancer and that's what he did. They gave him chemo BEFORE they removed his bladder to clean up anything looming before the bladder was removed. A few years later, he doing great. He's the only survivor they had in their database for us to talk to. I hope this information helps you. I pray for you and your family's strength during this heartwrenching journey. Take care, Sincerely, Lyn
Dear Candi, Thanks so much for your kind e-mail. I came home late last night from a performance and didn't have a chance to respond. It's really frustrating in this war against cancer. Throughout my father's battle I knew how bad his situation was but since he was such a fighter and I'm not one to ever give up, I thought we needed to fight it head on and try different approaches. There's no dress rehearsal for any of it, emotionally or clinically. So often Candi, it was like - door #1, 2 or 3. Should we do this or should we do that. Should we go here or should we go there. I was so disheartened to learn that we didn't have alot of options. I should say good options with good track records. This wasn't good enough for my father or anyone else in his shoes. I had this insatiable desire to keep on searching for something all the while knowing deep down how critical things were. The reason I'm relaying all of this to you is that all I can do is share all of the info I have accumulated and hope it helps somehow. But the bottom line is - it should be better for anyone going through this. I was absolutely disheartened to learn about Dana Reeves death today. It's such a tragedy. With all the technology in the world, the internet, cell phones, sending out missions to Mars and Jupiter, fighting a senseless war in Iraq and wasting billions and billions of dollars on it and not to mention precious lives, and this is it? They should be able to do better. I swear sometimes I wonder if they want to find a cure. They don't act like it. Sorry to be rambling Candi, but there should be something better out there for your Dad and there should have been something better for my father. Now that I've stepped off my soapbox - my shows in Las Cruces are open to the public. The one that is exclusively for the public is on the Friday night, April 7 at 8:00 pm I believe. The other shows are educational programs for school children that are bussed in. It's the same show but those are on Thursday a.m. I will have some free time on early Friday afternoon if you could possibly meet. I think I'm supposed to be in New Mexico next January but that's a long way off. You can e-mail me through my website. That would be the best way. I would love to meet you Candi but if you can't make it I completely understand. Five hours isn't a walk in a park. I hope you are doing okay. I think about you alot going through this. Your father's illness is enough to deal with but combined with all of the other challenges it's got to be really hard. We can only take one day at a time and sometimes one hour at a time when necessary. It's amazing how we all get through it somehow. I think back to what my mother and I have endured and I still can't believe that we've gotten through. You'll get through too Candi. Just keep on hanging in there and be strong. I hope and pray your Dad's condition improves and I pray the day comes when he'll want you all around and involved in his care. Take care Candi! Keep me posted on things. My strength and friendship to you, Lyn
Dear Candi, I'm so sorry you're going through so much turmoil beyond the horror of your father's illness. I'm sure you know that the fact that the cancer has spread to his lungs isn't good. I'm wondering what kind of chemo he's on. I know that if one's white count levels get dangerously low, they can get neutropenia and people should wear masks around the patient. My father had that in his final few weeks. It actually got better but we were just really careful to make sure that no one had colds, etc. With everything I've gone through with my Dad and all the people I've been around in similiar situations, being around your loved ones is the best medicine in the world. It helps tremendously. I've never been the type to meddle, it's not my nature but let me offer you this advice. I think you and your siblings, depite any problems amongst you, need to take a stand. I would think you should all plan a visit, maybe not at the same time. Your father may or may not realize how dangerous his disease is and the implications of the cancer spreading. The chemo won't cure it. It may make it better for a while Candi, but it won't cure it. And then, when it gets worse, the doctor may suggest more chemo and round and round it goes until he gets weaker and weaker. So either your father realizes how bad things are and can't deal with it or he doesn't really get it. Either way, it's a very serious situation and I wouldn't want any of you to have any regrets that maybe you didn't put your collective feet down. It's your right to see your Dad. Maybe someone needs to explain to your StepMom that you all want some closure with all of it. Candi, I'm not saying anything horrible is going to happen tomorrow but time passes quickly and each month that he's around is a gift. I can't believe how isolated you all are. It's really unbelievable. I think an intervention is necessary. I'd like to wring the doctor's neck for not even suggesting a second opinion. One thing we've learned is you to ask about EVERYTHING. You can't take anything for granted Candi. A caregiver has to be so proactive. Asking questions is a must. I just hope he's on a decent chemo. Try to find out what his regimen is. Maybe your StepMom needs a major heart to heart chat from you or one of your siblings. The whole thing about no visitors is a red flag in her approach to caring for your father. Obviously, you wouldn't want someone who is sick to be around him but he can't live in a bubble. Even though it was just my mother and I caring for my Dad, we had so much support from our family and friends. He was closely affiliated with a beautiful restaurant in town. It was written up in USA Today as one of the ten best restaurants in the country with a view. He would spend so much time down there for the two years he was going through treatment. It was his second family. He felt so much love and positivity when he was down there. I know for a fact how much hope it gave him. Thankfully, we had a very cohesive team of people around us. As a matter of fact, when my Dad was hesitant about going to the Burzynski Clinic for treatment, I asked the manager of the restaurant to talk to him and help convince him to go. He assured us that money wouldn't be a problem. They would have fundraisers, etc. to help him through. Those gestures are things you never, ever forget. I wish you had the same type of circumstance going through this with your Dad. I just don't want to see your father get so weak someday, that you all haven't had some treasured moments to spend with him. By the way Candi, I am a professional illusionist and I will be performing in Las Cruces, NM with the Las Cruces Symphony Orchestra on April 8. I'm not sure how far away your are, but I'd love to meet you! My website is www.magicoflyn.com. Check it out if you can. I wish you the very, very best of luck dealing with everything. Please feel free to e-mail me anytime you'd like. I'm sorry this site won't allow phone numbers to be printed. I don't quite understand that. But I would really try and look up the info for the Las Cruces show and see if that would work for you. You and your father are in my heart and in my thoughts. Please take good care Candi. Love Lyn
Dear Candi, Please keep in touch and know that I am here to offer any help or support. A few of the immune boosting things my father did was to drink Essaic Tea, he took Transfer Factors and Green Magma, we did juicing. He took lots of other stuff too. That's the tip of the iceburg. One thing that can't hurt would be to seek out a naturopath with experience in treating people with cancer. I love their spin on the disease. They get to the root of what caused the cancer in the first place. They believe that something went awry in the immune system to cause it. Be prepared for a rollercoaster of a journey my friend. It's not an easy road for anyone but especially not when one's health is compromised. Take good care of yourself in all of this Candi. Lyn
Dear Candi, Here are a few things you might want to explore. I would check out MD Anderson in Houston asap. I know they are doing some clinical trials on small cell bladder cancer. Don't know if it could help your Dad. Also, Alimta is a good chemo drug that is showing some promise and there aren't too many side effects. Avastin is a possiblility too if the cancer hasn't spread to the brain. Another thing to check out is if your father has the HER-2 gene. If he does, Herceptin may help him. It's showing lots of promise for bladder cancer. At the Burzynski Clinic in Texas, they were hoping my Dad would have tested positively for that gene because they thought it could have helped him. Unfortunately, he didn't. For some people, the Burzynki Clinic works wonders. We witnessed it firsthand. My father was too weak before we went down to have any real success. It's a very controversial place - they are doing FDA clinical trials. Here are the chemos my father had that didn't do too much for HIM - who knows for someone else. Everybody's make-up is different. Cisplatin and Gemzar - he had this combo after his bladder was removed to "ensure" that the cancer wouldn't come back. Obviously, it didn't work. Etoposide and Carboplatin - had this combo after cancer spread to his lungs. Had some shrinkage for about 3 months. Then it got worse. Taxol - was on this for five months - wasted precious time - caused major neuropathy and the cancer got a lot worse. I would also call Sloan-Kettering too if you don't have any luck at MD Anderson. Dr. Bajorin is the head of the geriurinary dept. He's excellent - we went there. There was a lady who was there that we met and she was doing really well with small cell bladder cancer. He had put her on a much more involved regimen of chemo than my father had. By the time we got to Sloan Kettering my father's cancer had already gone to the lungs and he had been on the "gold standard" drugs so his options were limited. I would read some books on keeping the immune system strong. He'll need to be as strong as possible to get through any chemo. Supplements can help alot. There is a company from California that will test a tissue sample of one's cancer with many different chemos to see which chemo or combo will work on that specific cancer. It's rationaltherapeutics.com I think it's a major breakthrough so people aren't wasting valuable time going from one chemo to the other. The more chemos you have, the weaker the immune system gets. I wished I had known about this place sooner when we got a biopsy. If you are seriously interested in it, call them. There is a certain procedure for protecting the sample and sending it to the lab. I think the bottom line is to get your father to a place that specializes in cancer. Small cell bladder is extremely rare so some doctors probably haven't encountered it before. I wish you much, much luck with your father. Keep in touch and let me know if I can be of further help. L.
Dear Miatri, I am so sorry it's taken me so long to respond to your e-mail. I haven't been on this site for months. I am so very sorry to tell you that my beloved father passed away last October. We had gone to the Burzynski Clinic in Houston last May. His cancer had spread to the liver as of last April. We knew the chemo wasn't working anymore and that anymore "typical" chemo would be futile. So my Dad was fairly convinced that the Burzynski Clinic was worth a try. We were there a month and the cancer was definitely getting worse. He went on a very aggresive treatment for a few weeks. Meanwhile, he was losing weight, his appetite decreased, and he was very hoarse. It was so scary. I had to learn how to administer the treatment myself and it was very involved. When we finally came home, the day after, my father's lung collapsed and we rushed him into the hospital. While we were in Texas, his cancer had increased by 18%. A tumor was pressing on his vocal chords and that's why he could hardly speak. He had radiation for six weeks and it worked wonders for his breathing. Unfortunately, the cancer in the liver was getting worse. He got weaker and weaker. We thought we would try one last idea with a new kind of chemo. He had a CT-Scan before he started and his cancer had spread to the brain. He was eating less and less and getting weaker. We brought him to the hospital and the doctor said he had about a month left to live. To hear those words was just the worst nightmare one could imagine. Up until that morning the fight was still on in our minds and hearts. We still had a smidge of hope left. Now, it was a horrible reality. He stayed in the hospital another week and then he wanted to come home to die. My mother and I honored his wish and with the help of some incredible friends, family and neighbors, we took care of him. The day he left the hospital, the doctor said he had about a week left and to the hour, a week later, he died. I've beaten myself up so much about all of the treatment decisions - should have, if only, etc. The heartwrenching part of this journey is that you learn as you go along. All of the vital information comes along too late sometimes. The only thing that makes me feel "okay" about it all is that small cell bladder cancer is incredibly hard to treat and it's very, very rare. Nobody really knows too much about it because they haven't treated that many people with it. By the time we really got proactive was when it had spread to his lungs. Before then, we thought everything was fine. By that point, even though the tumors weren't that big, it most likely had started to spread elsewhere. From some of the people we talked to, we think that he got an extra 8 months to a year because of the alternative medicine he was on. I guess with the aggresive nature of his cancer, that was pretty good. I'm so thankful that he was alert enough to know the incredible impact he had on so many lives and how very deeply loved he was. For the most part, my mother and I had the closure we needed. If you have any questions, please don't hesitate to call me at --- Message edited by CancerCompass staff: for personal protection, phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. I do feel that maybe some of our experience could help someone else. What didn't work, what might have worked, different doctors we never seeked out, etc. I wish you much, much luck in this difficult journey. Take good care, L
Dear Marilyn, My father's schedule was similar to your husband's when he was on Gemzar and Cisplatin. Two times a week and then two weeks off. We live about an hour south of Boston in Massachusetts. So far, every oncologist we've come in contact with has not advocated building up my father's immune system. His current oncologist knows he is on a lot of alternative supplements and doesn't have a problem with it but he doesn't have any knowledge about any of it. It's amazing - you would think that helping a patient survive the chemo would be part of the whole regimen. We took it upon ourselves to seek out a naturopath after hearing of two people firsthand that he's helped. One person had only a few months left to live. His prostate cancer spread to the colon and he couldn't have anymore chemo or radiation. His Dr.'s in Boston told him they could't do anymore for him. Thankfully, he went to a naturopath and went on a comprehensive alternative supplement program. After 5 years, he is still around and doing great with no sign of cancer. My father is following a very similar protocol. The problem with chemo and radiation is that it diminishes the immune system and can potentially harm vital organs with it's toxicity. At the very least, it's important to keep the liver and kidneys working well to flush out the toxins. If you would like any more info please contact me Marilyn. Believe me, I'm not an expert by any means. I have a full time demanding career but ever since my Dad's cancer spread to his lungs I've become rather obsessed over other options for him. He's been on chemo continually since last May and there has only been a few days due to low blood counts that he's had to stay home but not even in bed. I truly believe the alternative stuff is helping the side effects from the chemo and hopefully the cancer at bay. Please take care and much, much luck to you. L.
Showing 1 - 10 of 12

Page 1 of 2

Loading...

About Llane

Bladder Cancer

We care about your feedback. Let us know how we can improve your CancerCompass experience.