CancerCompass message board discussion started by elikapeka on 11/21/2007 http://www.cancercompass.com/message-board/message/all,18152,0.htm Wed, 27 Aug 2008 00:00:00 GMT Wed, 27 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, does anyone have information or experience with this?  My husband was diagnosed 7/31/07. He is white, 60 years old, ex-smoker, classic profile. We have completed 2 of 4 chemotherapy treatments with cisplatin/gemzar. The urologist removed 6.5 ounces of the tumor to alleviate the blockage from the bladder to the uretha in August. The right kidney is still blocked and a nephrostemy tube empties urine from that organ. The bladder will be removed after the 4th chemo. The diagnosis is "invasive and aggressive" and the staging will be established after after the chemo is completed.   Any information or resources would be greatly appreciated. elikapeka Wed, 21 Nov 2007 00:00:00 GMT My Dad was diagnosed with an aggressive type bladder/urothelialcancer early 2007. Unfortunately, the diagnosis was too late and hepassed away in March of '07. I currently do volunteer work with tehBladder Cancer Advocacy Network. THeir website is www.bcan.org. You canfind very informative stuff on that site. In addition,www.blcwebcafe.org is a site which I found quite helpful while goingthrough the battle with my Dad. It was helpful to be able to chat withothers going through the same thing. Since my Dad's fight was soo shortlived (he actually contacted sepsis, probably from the catheter whichwas in place for 5+ months), I really can't help with any informationmyself regarding chemo, etc. I do wish your husband and you and yourfamily the best. Please know that there are people out here who aresaying prayers for you all. God bless.Kathie  Kathieb Thu, 22 Nov 2007 00:00:00 GMT Thank you for writing. I'll take a look at that site. I'm so sorry about your dad. My best to you and your family. elikapeka Thu, 22 Nov 2007 00:00:00 GMT I had a radical systectomy April 29 2,004. I was 57 at the time. in my case thank G_D it was not invasive and it looks like it was caught on time.I live in Texas but had it done at USC Norris Cancer Center in Los Angeles with Dr. Donald Skinner and his team. This is what they do and they are great at it.Before my surgery I had BCG treatments that did not appear to help much. It has been almost 4 years now and everything seems to be fine. I wish you all the best especially on this Thanksgiving Day. If I can help in any way please let me know and I'll gladly try Skylid Thu, 22 Nov 2007 00:00:00 GMT Thank you for writing. May I ask, was there lymph node involvement; were they removed? It's great to hear that you found an expert physician; that's what I'm reading in the research, that the treatment outcomes are highly dependent on the expertise of the medical team. Fortunately we found an excellent urologist and oncologist team. We have not talked much about the squamous cell cancer which scares me.  As much as I want to ask questions, it's critical that my husband sets the tone for the discussions.  Anyway, thank you again for writing and a hope you had a fine Thanksgiving too.    elikapeka Thu, 22 Nov 2007 00:00:00 GMT  On 11/22/2007 elikapeka wrote:Thank you for writing. May I ask, was there lymph node involvement; were they removed? It's great to hear that you found an expert physician; that's what I'm reading in the research, that the treatment outcomes are highly dependent on the expertise of the medical team. Fortunately we found an excellent urologist and oncologist team. We have not talked much about the squamous cell cancer which scares me.  As much as I want to ask questions, it's critical that my husband sets the tone for the discussions.  Anyway, thank you again for writing and a hope you had a fine Thanksgiving too.  In my case there was no lymph node involvement, all the nodes taken out during the surgery where clean. Ask questions, don't be afraid to. Good Doctor's do not mind and if they did I would be concerned. Doctor's can talk to you about statistics, percentages, possibilities, alternatives, etc but you as the patient or the pateint's family should ask the human, concerned, scared questions that need answets. When I met with Dr. Skinner  did so with my wife, one of my daughter's and my brother. Our meeting lasted hours before I decided how to proceed. I do not regret my choice.Good luck. Know that there is light at the end of the tunnel and that wtih good Doctor's, faith and prayer the chances of having a long life with excellent quality of life are there.  Let me know if I can helo   Skylid Thu, 22 Nov 2007 00:00:00 GMT  On 11/21/2007 elikapeka wrote:Hi, does anyone have information or experience with this?  My husband was diagnosed 7/31/07. He is white, 60 years old, ex-smoker, classic profile. We have completed 2 of 4 chemotherapy treatments with cisplatin/gemzar. The urologist removed 6.5 ounces of the tumor to alleviate the blockage from the bladder to the uretha in August. The right kidney is still blocked and a nephrostemy tube empties urine from that organ. The bladder will be removed after the 4th chemo. The diagnosis is "invasive and aggressive" and the staging will be established after after the chemo is completed.   Any information or resources would be greatly appreciated.Hi, I just read your message. Sorry to hear your husband found out so late about his condition. I have bladder cancer. I have two kinds and one had high grade cells and the other one had low grade cells.I found out June 7, 2007., while my husband was in rehab from his cancer surgery.I had great fortune to find a good doctor at Shanes in Gainesville Florida. He saw me and did surgery the next day. My bladder was full of cancer but it had a small base and hadn't invaded the muscle wall yet. Dr Algood cut it all out and I have been taking BCG treatments since. I am on my my second set of BCG and it has really bothered me with side effects. He said not many people can handle this treatment plan for 6 years. Looks like I will be one of them. He is lowering my dose on Wednesday to see if I do better with it.I don't know what the future will bring but I feel like one of the lucky ones to find out early. I had blood in my urine and had it tested and was referred to an urologist. It is really scary to have cancer, I feel like my life may be over and then maybe not. The unknown is very depressing.I sure hope things go well for you. I understand the caregiver part because I am my husbands caregiver. He had his left pelvis removed with bone cancer and we are dealing with that. Some days I feel like, where is my care giver. I will pray for your husband and family. Best of luck Larue6 Mon, 26 Nov 2007 00:00:00 GMT  On 11/26/2007 Larue6 wrote: On 11/21/2007 elikapeka wrote:Hi, does anyone have information or experience with this?  My husband was diagnosed 7/31/07. He is white, 60 years old, ex-smoker, classic profile. We have completed 2 of 4 chemotherapy treatments with cisplatin/gemzar. The urologist removed 6.5 ounces of the tumor to alleviate the blockage from the bladder to the uretha in August. The right kidney is still blocked and a nephrostemy tube empties urine from that organ. The bladder will be removed after the 4th chemo. The diagnosis is "invasive and aggressive" and the staging will be established after after the chemo is completed.   Any information or resources would be greatly appreciated.Hi, I just read your message. Sorry to hear your husband found out so late about his condition. I have bladder cancer. I have two kinds and one had high grade cells and the other one had low grade cells.I found out June 7, 2007., while my husband was in rehab from his cancer surgery.I had great fortune to find a good doctor at Shanes in Gainesville Florida. He saw me and did surgery the next day. My bladder was full of cancer but it had a small base and hadn't invaded the muscle wall yet. Dr Algood cut it all out and I have been taking BCG treatments since. I am on my my second set of BCG and it has really bothered me with side effects. He said not many people can handle this treatment plan for 6 years. Looks like I will be one of them. He is lowering my dose on Wednesday to see if I do better with it.I don't know what the future will bring but I feel like one of the lucky ones to find out early. I had blood in my urine and had it tested and was referred to an urologist. It is really scary to have cancer, I feel like my life may be over and then maybe not. The unknown is very depressing.I sure hope things go well for you. I understand the caregiver part because I am my husbands caregiver. He had his left pelvis removed with bone cancer and we are dealing with that. Some days I feel like, where is my care giver. I will pray for your husband and family. Best of luckIt's a relief to connect with someone else in this cancer life.  Thank you for writing. Are you two able to care for yourselves and for each other? Did you loose your bladder or do you still have it? Do any alternative treatments help with the bcg side effects, like acupuncture? I don't know anything about bcg.  This is a freaky time because he was so sick for months, started chemo, and after the 2nd treatment he was doing so well that his oncologist let him travel across the country before the next chemo. I think we will learn a lot more when we meet with his new urologist in 3 weeks.  The meeting will either be really good or not.Are you alone in caregiving for your husband?  Sorry to be asking so many questions. Prayers for you and your husband.   elikapeka Tue, 27 Nov 2007 00:00:00 GMT  On 11/27/2007 elikapeka wrote: On 11/26/2007 Larue6 wrote: On 11/21/2007 elikapeka wrote:Hi, does anyone have information or experience with this?  My husband was diagnosed 7/31/07. He is white, 60 years old, ex-smoker, classic profile. We have completed 2 of 4 chemotherapy treatments with cisplatin/gemzar. The urologist removed 6.5 ounces of the tumor to alleviate the blockage from the bladder to the uretha in August. The right kidney is still blocked and a nephrostemy tube empties urine from that organ. The bladder will be removed after the 4th chemo. The diagnosis is "invasive and aggressive" and the staging will be established after after the chemo is completed.   Any information or resources would be greatly appreciated.Hi, I just read your message. Sorry to hear your husband found out so late about his condition. I have bladder cancer. I have two kinds and one had high grade cells and the other one had low grade cells.I found out June 7, 2007., while my husband was in rehab from his cancer surgery.I had great fortune to find a good doctor at Shanes in Gainesville Florida. He saw me and did surgery the next day. My bladder was full of cancer but it had a small base and hadn't invaded the muscle wall yet. Dr Algood cut it all out and I have been taking BCG treatments since. I am on my my second set of BCG and it has really bothered me with side effects. He said not many people can handle this treatment plan for 6 years. Looks like I will be one of them. He is lowering my dose on Wednesday to see if I do better with it.I don't know what the future will bring but I feel like one of the lucky ones to find out early. I had blood in my urine and had it tested and was referred to an urologist. It is really scary to have cancer, I feel like my life may be over and then maybe not. The unknown is very depressing.I sure hope things go well for you. I understand the caregiver part because I am my husbands caregiver. He had his left pelvis removed with bone cancer and we are dealing with that. Some days I feel like, where is my care giver. I will pray for your husband and family. Best of luckIt's a relief to connect with someone else in this cancer life.  Thank you for writing. Are you two able to care for yourselves and for each other? Did you loose your bladder or do you still have it? Do any alternative treatments help with the bcg side effects, like acupuncture? I don't know anything about bcg.  This is a freaky time because he was so sick for months, started chemo, and after the 2nd treatment he was doing so well that his oncologist let him travel across the country before the next chemo. I think we will learn a lot more when we meet with his new urologist in 3 weeks.  The meeting will either be really good or not.Are you alone in caregiving for your husband?  Sorry to be asking so many questions. Prayers for you and your husband.Hi,  I am more capable to care for him, he needs crutches to get around. and can't do anything. We have worked on him dressing himself and showering alone. I have not lost my bladder at this point. Doctor has not mentioned it yet. So far all the cancer seems to be gone. The treatments, BCG, is a live bacteria that causes TB. Seems it works by making the ammune system  work to kill the bacteria and the cancer cells. I have it inserted in the bladder with a cathier, hold it for 2 hours and then urinate it out.I have to use bleach in toilet for 24 hours to kill the bacteria, and keep it off my skin. Scary huh? Then the side effects start. I pass bllod and have pains and a urgentcy to go 24/7 and severe pain when I go.This next 3 weeks must be the longest in your life .I have a hard time waiting for the unknown. I will keep you in my thoughts and prayers.Let me know what the new urologist tells you. Is he a oncologist too? You have to be strong for your husband. I know that is very hard to do. But don't hold back any questions to the doctor. You need to get your thoughts together to understand whats going on too.Take care   Larue6 Tue, 27 Nov 2007 00:00:00 GMT Hi,Somehow your message back to me was deleted. Pls reply back. I got good and bad news last week. I am doing fine ,but my husband's chrondrosarcoma in his pelvis has spread to his lungs. Two spots; one in each lung.He is getting surgery Dec 13 to remove them. This is not good. This cancer is very aggressive and this has changed our life AGAIN!!!! You just can't make plans when you have cancer. CANCER loves to take control. How much longer do you have to wait for your new Doctor appt? Best wihes, Keep praying Larue6 Mon, 03 Dec 2007 00:00:00 GMT  On 12/3/2007 Larue6 wrote:Hi,Somehow your message back to me was deleted. Pls reply back. I got good and bad news last week. I am doing fine ,but my husband's chrondrosarcoma in his pelvis has spread to his lungs. Two spots; one in each lung.He is getting surgery Dec 13 to remove them. This is not good. This cancer is very aggressive and this has changed our life AGAIN!!!! You just can't make plans when you have cancer. CANCER loves to take control. How much longer do you have to wait for your new Doctor appt? Best wihes, Keep prayingHi again, I'm glad you wrote again. You are so right; cancer takes control of our lives. We just finished the 3rd of 4 chemotherapies and he is doing well.  The urologist appointment is on the 18th. I am so sorry to hear about your husband. How is the drive to the hospital? I could drive the route with my eyes closed.  I have to push myself to focus on the traffic when we leave the doctor. Are you able to stay during his procedure and recovery time? I hate the waiting room; the chairs seem dirty and it reeks of cigarette smoke even though no one smokes in there anymore. I realize that hating the waiting room is really misplaced emotions about the cancer.Is your husband having difficulty breathing? Do you know what to expect after the surgery? I'm so glad that you had good news about you. Thanks for keeping in touch. elikapeka Tue, 04 Dec 2007 00:00:00 GMT  On 12/4/2007 elikapeka wrote: On 12/3/2007 Larue6 wrote:Hi,Somehow your message back to me was deleted. Pls reply back. I got good and bad news last week. I am doing fine ,but my husband's chrondrosarcoma in his pelvis has spread to his lungs. Two spots; one in each lung.He is getting surgery Dec 13 to remove them. This is not good. This cancer is very aggressive and this has changed our life AGAIN!!!! You just can't make plans when you have cancer. CANCER loves to take control. How much longer do you have to wait for your new Doctor appt? Best wihes, Keep prayingHi again, I'm glad you wrote again. You are so right; cancer takes control of our lives. We just finished the 3rd of 4 chemotherapies and he is doing well.  The urologist appointment is on the 18th. I am so sorry to hear about your husband. How is the drive to the hospital? I could drive the route with my eyes closed.  I have to push myself to focus on the traffic when we leave the doctor. Are you able to stay during his procedure and recovery time? I hate the waiting room; the chairs seem dirty and it reeks of cigarette smoke even though no one smokes in there anymore. I realize that hating the waiting room is really misplaced emotions about the cancer.Is your husband having difficulty breathing? Do you know what to expect after the surgery? I'm so glad that you had good news about you. Thanks for keeping in touch.Hi, I have been in Gainesville at Shands Hospital for 1 month now. My husband's cancer came back in his pelvis area again. It was 6 tumors in 1. Size of a football.This time they took his leg and one testical. He ended up with 3 surgerys.  The incision wasn't healing and it turned black so it needed to get repaired. Now he has formed a blood clot in his arm and due to the surgery has no bowel control.Problems after problems. The doctors said they are moving him to Rehab for mental reasons. No one does well when they are in hospital so long. After surgery his intestines wouldn't work, he didn't eat for 3 weeks. He is so weak and thin.I don't know if he can fight much more.......He still has his other lung to deal with.Cancer is no fun. I am still getting my treatments and so far so good.. The ride to hospital is 105 miles one way and I stay in a motel. My husbands surgery was 4 hours with uologist and 12 hours with the orthopedic surgeon. They call me when he is done and I usually wait in motel. It's only 2 miles away.The doctor said only 10% of patients with this type of cancer live past 2 years from the time they are diagnosed. For him, that's September 2008. This last surgery was only for comfort and he won't do anymore hip surgerys on Dan.There is nothing else he can remove.Not a good report.I just hope he gets a few good months before another issue arises. Well you take care and hang in there. Sounds like you have better chances . At least I hope soLaRue Larue6 Sat, 23 Feb 2008 00:00:00 GMT Hi LaRue,So sorry! I just found your 2/27 reply this morning, 3/3/08. Somehow my email decided that the CancerCompass site was spam so the message went to a spam file instead of the inbox. That won't happen again.I am heartsick to hear about your husband. If he is on morphine, that's good for the pain but it made my husband irrational and cranky. He was impatient with everyone and once he got onto percocet he was nicer. LaRue, I hope there are people who are supporting you at this time. We are very private people and Phil didn't want visitors nor for anyone to know, but you can only keep people who love you away for so long. I imagine you are beyond exhausted.  I'm at home with my husbandwho was released last Friday from the hospital after a 3 week stay. He had the radical cystectomy surgery where his bladder, prostate, and lymph nodes were removed and a new bladder was created. He went through the surgery just fine but his digestive tract took some time to start working again. He had terrible diarrhea and I was glad to be there to help him. He was going crazy to get out of there too. We had all good news; the chemotherapy killed all the cancer cells. He had a 20% chance of living to 5 years after diagnosis.  I am just exhausted even though we had good news. I think the last 7 months have sucked the wind out of my sails.  Not to mention but a year ago this time he told me he wanted a divorce; I felt like some body snatcher had moved into him. It has been a wretched year. Well the cancer sure put his old self back into him. It brought us back together and I pray we stay that way. It's sure a relief to safely vent with someone who understands this insanity. You can't tell friends or family about the horrors of living with cancer.My husband is learning to use a catheter to remove the urine from his new bladder. I am helping by "irrigating" flushing out the area using saline and injecting it into the cather. It is nothing I ever imagined I would be called upon to do but it has to be done and it is all ultimately good.LaRue is there anything I can do for you from so far away? Please say so, I am thinking of you and your husband.later,Elizabeth elikapeka Mon, 03 Mar 2008 00:00:00 GMT