Bladder- Other (Urachal Mucinous Carcinoma)

I have have several regimes of chemo, last 2 years. Have kept cancer from spreading, but lymph nodes increasing in size. Methotrexate was last treatment, starting Adriamycn shortly. Have tolerated all regimes quite well. Have had 1/2 bladder removed, along with the tumor and the urachal ligament.

Anyone have any experience with Adriamycn? I know hair loss is possible, but lost hair earlier this year with previous regime.
I am under the good care of the MAYO clinic in Jacksonville, FL.

Appriciate any comments, experiences. Thanks. JIM H

Your several tours of chemo...were they systemic,(in through a vein?) or like mine, BCG/Interferon A administered through the urethra into the bladder and retained 2 hours, weekly for 6 weeks?
My next cystoscopic exam is 3/8 to see if the BCG "got it all" . I'm hopeful that it did. If you've had several courses of chemo, how do you accept the fact that this is often a recurring cancer? My mind knows that but I've not yet had to deal with recurrance. My first message was 1/28/05 if you want to know more of my history with the disease. I'd appreciate any "upper's" you can share as I look forward to that 3/8 exam. hjtk

The University of Cincinnati (Dr. Lowey) at the Barret Cancer Center performs Hyper-Thermal Perennial Chemo wash. This is basically a surgery that the patient is opened up, the cancer areas are surgically removed, then the entire area is washed in warm chemo for about 90 minutes. This process kills all of the remaining microscopic seeds. This works when the cancer is localized in the abdomen. My wife had this surgery done in August, and is now cancer free. This was after chemo failed after it succeeded for about a year. Chemo is rarely a cure; sometimes it holds back the growth and spread. This is a cure.

Hanna, thanks for your note. I had a port planted in my chest for the chemo and blood work.To be clear, my cancer is in the pelvic lymph nodes. I have tolerated chemo quite well for 2 years til this last injection of taxotere.on 1/27. I have also had half of the bladder removed as well as the urachal ligament which is about 18 inches long and includes the navel. The shot of taxotere really knocked me out, but after 2 weeks of almost complete disability they decided I have a cardiac problem of a blocked artery, and will have catheritization on 3/9. If all goes well, will begin chemo again.

I know this is a time game, and I am under care of Mayo Clinic with one of the best oncologists. They can not surgically remove the lymph nodes, so will just have to go with the flow and try to be well as long as possible.

Good luck on your tests on the 8th. Let me know.

God Bless, Jim H.

Hanna, thanks for your note. I had a port planted in my chest for the chemo and blood work.To be clear, my cancer is in the pelvic lymph nodes. I have tolerated chemo quite well for 2 years til this last injection of taxotere.on 1/27. I have also had half of the bladder removed as well as the urachal ligament which is about 18 inches long and includes the navel. The shot of taxotere really knocked me out, but after 2 weeks of almost complete disability they decided I have a cardiac problem of a blocked artery, and will have catheritization on 3/9. If all goes well, will begin chemo again.
I know this is a time game, and I am under care of Mayo Clinic with one of the best oncologists.They can not surgically remove the lymph nodes, so will just have to go with the flow and try to be well as long as possible.

Good luck on your tests on the 8th. Let me know.
Jim H.
If you prefer, contact me directly at jim_hummel@hotmail.com.

God Bless, JH

I am a 29 year old female who was diagnosed the week before Christmas. I was pregnant with my second child when I started urinating blood. I was treated for a UTI. Needless to say the hematuria did not stop after pregnancy. After a CT scan showed a mass in the bladder, a cystoscopy was performed and the tumor was removed. Unfortunately it had already spread to the lymph nodes, the lungs, the hip and two verterbrae. I've had four treatments of chemotherapy (5FU, cisplatin, leukavorin) and the lymph nodes and remaining tumor in the bladder have significantly shrunk. However, there are three new spots in the lungs and spots in the bones have gotten worse. Can anyone offer advice on changing chemo or sticking with this one since it's doing something? It would just be nice to talk to someone else with this type of cancer so please reply!

I am sorry to read of your situation. My husband, age 60, was diagnosed with bladder cancer in Sept. His is transitional cell PLUS mainly small cell which is aggressive and tends to travel. Do you know the cell type of your cancer? Since my husband has mainly small cell he has been treated with cisplatin and etoposide. The goal was for six cycles of chemo but after three cycles his platelet count was too low and would not recover. So now we have moved on to radiation. He is doing very well. I will keep you in my prayers.

I'm sorry to hear about your husband. I have adenocarcinoma which is even more rare. I am currently undergoing radiation on my spine. I previously had radiation done on my hip. I will begin chemo again after 8 more treatments of radiation. I hope the treatments helps your husband. I will pray for him as well.

Jim...my hopes for a beneficial test for you on 3/9 were in my head when I read your last message, and that's also when my geriatric (10/99) Gateway began having "non-benign-behaviors" and I'm still in process, almost daily, with a 'retired' techie, who just fixes 'nice' peoples computers for pin-money. What with a new monitor, more USB ports (for the camera and Palm), more memory, a 2nd hard drive in the near future, the addition of Windows XP...I'm very delayed in getting on-line again and back to you. Hopefully the catheritization went well and the results made it possible to give you more comfort and function. Has your chemo resumed? Not taxotere I hope!

My 3/8 cystoscopic exam showed no cancer....which the oncologist let me enjoy for about a minute and a half before he said, they've found that three 3 month cycles of 'preventative maintenence' chemo (with a cysto exam at the end of each) shows great benefit in reduction of recurrance. So....as you said so well....it's a time game, and we will try to be well as long as possible. My new series begins 4/11....and so it goes......hoping you are well....hjtk

Hi, thanks for your email note the other day. I had to come back to the message board to get your story back in my mind.
Well, the catheritizion found no serious blockages, so I had chest xray and CT scan which found numerous sub centimeter nodules on the lungs. Too small to do anything about now. In meantime kept getting weaker, debilitating tiredness, shortness of breath, etc. Finally diagnosed as severe anemia. Have had over 2 years chemo and all previous tolerated well, but caught up with me. Got a shot of aresep, am now on predisone which has helped greatly, and white cells back to over 5. When Mayo saw the CT scan and my weakness they put me on home hospice, which I was not mentally ready for, but they have been quite helpful, altho their mindset is to keep you comfortable for your final few weeks! That is not where I am at!! Anyway I am using oxygen and that has helped improve breathing, am eating well, (lost 20 lbs since 2/1). I had the kidney stent replaced last Tues at Mayo in Jacksonville. Oh, the reason for hospice is so I would not have to drive 3 hrs each week for an appt. I had previously taken some chemo locally, but going to MAYO really gives one comfort and support.
At the moment, I do not know the status of the pelvic lymph nodes, do not think they are growing, altho the stent was still necessary.
Iget a full CT scan 4/13 to check on the lungs and we will just have to go from there.
I am in Central Flordia, north of Orlando. Where are you? Please respond to my email address if you do not mind.
God Bless, keep well, Jim H.