My father was diagnosed in June of '03 and had his bladder removed. The tumor had gone through the bladder wall. The surgeon "thought" he got it all but suggested my father having some chemo to clean up anything looming. His bladder cancer is was a combination of transitional cell and small cell.
He went for four rounds of chemo and everything was clear in January of 04. Enter April of '04. My parents and I go to Mass General to visit with the oncologists (a fellow and head oncologist) and they tell us they looked at the CT Scan and everything looked fine. They were just waiting for the chest scan report but they assured us it was fine. Twenty minutes later when we were in the lobby of the hospital getting some coffee, the fellow oncologist tracks us down and says he has some bad news. The report came back (in the last twenty minutes) and it showed a mass on the lung. The collective life was drained out of us. It was such a nightmare! Needless to say, my father is not being treated there anymore. How can we have faith in doctors that can't even be prepared for a patient's visit. Now we get a second opionion from Sloan Kettering in NYC and they concur with the Mass General protocol for chemo. Last May, my father started on Etoposide and Carboplatin. He had to switch last December because the tumors had slightly increased. Now he's on Taxol. Aside from low hemoglobin counts and an occasional blood transfusion, he's doing quite well. He is also on quite a regimen of alternative supplements including essiac tea to keep his immune system strong. He's only had one minor cold this whole season and he frequents his restaurant stops every day. He's 71 and doesn't have any other medical problems. He's a fighter, a trooper, and he's my inspiration. I'm just curious if anybody out there has the same kind of cancer and what your treatment is. If the taxol doesn't help matters, we may go to MD Anderson or maybe Cancer Treatment Centers of America. I feel research is on the brink of a lot of good stuff. We need to always remain hopeful and stay positive. Any input would be greatly appreciated. Thank you. llane
My husband was diagnosed with stage 3, 3 bladder cancer with 80% being small cell cancer in Sept. 04. He had a surgery to remove the tumor and and do a biopsy on Oct. 8, 2004. They were able to remove most of the tumor but not quite all. We went to the Cleveland Clinic and they decided to treat the small cell cancer first since that is the most aggressive. The goal was to have six cycles of chemotherapy, Cisplatin and Etoposide. However, after three cycles, Lou's platelet counts were below 100,000 so that ended the chemo. He is now going through radiation on the bladder to go after the transitional cell cancer in the bladder. I know the small cell cancer is an aggressive cancer and the lung is a common location for this type of cancer. It really scares me to think about the future and I, too, would like to hear from any survivors of this type of cancer (which is very rare). Please keep me posted on your father. Marilyn
No, the doctor did not put Lou on anything for his immune system. We inquired about it but he was not in favor of it. Lou's chemo cycle was three days of chemo and then off for two weeks, however, it ended up being off for three weeks because of the blood counts. He ended up receiving 3 cycles, 9 treatments. How was your father's administered? Where do you live? I hope and pray your father does well. Keep in touch. God Bless. Marilyn
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.
Hoping to connect my mother-in-law with good Naturopath in the Boston/Cambridge area. She is fighting liposarcoma and in need of pain relief and palliative care, and would benefit greatly from nutritional and naturopathic care.
I was thinking about your father and wondering how things are going. Please let me know. Thank you.
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
Hello,
I was searching for more info and/or help and found your messages. I am hoping that we too may be able to learn from others experiences. My Dad and StepMom have kept so much fom us and for so long. So we really don't have a lot of info about what is going on but what we do know is that it is small cell bladdr cancer, back in December 05 he had surgery to remove the tumor in his bladder, it went from an early stage back in December 05, to satge 4 in January 06 (less than a month later). Even though it has spread, it has not yet reached his lungs (it is still mainly in the pelvic area). However, he is losing so much blood through his urinary tract that he is unable to keep his iron levels high enough to start chemo. He has had 2 blood transfusions over the past 2 weeks. My Dad lives in Tacoma, Washington and from what I was told, the doctors there don't know much about this kind of cancer or it's treatment and that really scares me.
Due to my own health issues (FMS/MPS/CFS/ & Migraines), I wasn't unable to attend my sisters wedding in LA back in May 05, but from what I was told, Dad was already very frail way back then. The only reason they decided to tell the 4 of us kids, now, was because the doctor told my StepMom that it was time to prepare us. To me, that means I should have been on a plane, like YESTERDAY. I am the big sister, so everyone is looking to me for answers and to see what we should do, but my StepMom says that my Dad doesn't want us all to come YET and they'll let us know when. All 4 of us live in diffrent places and none of us ive near dad. As a matter of fact, one of my sisters who currently lives in the OC (California) just purchased a home in Missouri (right before we found out about all of this). So she should be getting packed and selling their current home and becoming excited about the move but she's been stunted by not knowing what to do. I don't want to wait till it's too late but I don't want to cause yet another family drama either. We'd all welcome any advise from anyone who may be able to offer it. Right now, I feel like we're all desperate to know what someone who's "been there, done that" has to contribute to us.
My StepMom asked us to help her find more info on trials and treatments and whatever we could but I'm scared for so many reasons; We don't know if we need to be there NOW, we don't know enough about his condition/treatments/medications, he may not be in the best place to get help but maybe he's not strong enough to go elsewhere anyway, and that this is such an aggresive form of cancer.
Thank you for what you have all already offered here, at least that's a place to get started and please feel free to jump in with your oppinions and any advise you may have.
Sincerely,
Candi
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 Llane,
Thank you so very much for your quick response. This is the first time since we found out about my Dads condition, that I actually feel like we're getting some help and maybe some answers. This is all so scary for all of us but I know that if we can convince my Dad and my StepMom, we would all do anything and everything we possibly could for him. I am sure you felt the same way, but my Dad means the world to us and the thought of losing him so early in life, is devastating to us all.
In regard to the immune system information; My sister in Dallas sent Dad 3 cases of this drink that bodybuilders use to boost and keep their immune systems high. My sister and her exhusband are bodybuilders. Her ex has won many national and world titles. I see him in advertisements/cardboard cut-outs in the mall and in magazines, all the time. So anyway, companies often send them products to try out. My sister said that she's had herself and her 9 year old son, on this drink product for the past year and that neither of them have been sick at all, even when all the colds and flus were going through the elementary school system. I can't recall the name of the product, though I know it started with an "X" but hopefully, Dad is drinking it and hopefully, it will help to keep him healthy enough to endure whatever he must face, in his strugle to hold onto life. We are fortunate enough to know that Dad has always been very strong, determined, and a fighter. He is not one of those people who will just passively lay down and allow life to be taken from him. Thank God!
My sister in California said that Dad is also taking shark cartilage. I don't know where he got it or what form it's in or who told him about it, but supposedly it is helpful in helping cancer patients (how, I don't know). I say, whether it works or not, anything and everything is worth trying.
Anyway, I better get going. I need to try to get some sleep and I want to get this info. e-mailed to my siblings and my StepMom asap but before I go, I wanted you to know how grateful I am to you for all the ammunition/information you've given to all of us and/or armed us with. I am very sorry for all that you've been through with the loss of your own father but I am so thankful that you have the strength to continue to give to others.
I will keep you updated, I promise.
Eternally Grateful,
Candi