dianer57's Message Board Messages

Showing 1 - 10 of 14

Page 1 of 2

urachal cancer treatments

by dianer57 - October 29 at 9:02 PM

Has anyone taken xeloda with any results?  I am prescribed this med orally and would like to hear from anyone on any treatment that has shown improvement.  Thanks.  My cancer has traveled to both lungs now after 3 years and 8 months since surgery. 

On Oct 27, 2015 10:02 PM MjMelo wrote:

I also have mets to lungs. I've tried Gemzar and xeloda but did not get any results and was taken off after 1st scans. I'm in a immunotherapy trial right now and hoping to stay in it but my white blood and platlets are not cooperating! Hoping they come up, I've missed two treatments. Need them to come up so I don't get dropped from the trial. Wishing you thie best. Marjorie

What immunotherapy are you on? I am thinking of the pill form too. How on were you on it before being removed?Xeloda does not sound too appealing to me. What side effects did you have and how soon?

RE: Another Urachal Cancer Patient

by dianer57 - October 27 at 9:03 PM

What did the 5 FU do for skin problems.  Did you do the pills or I V. I am not knowing how successful this chemo is.Is it worth the side effects?

I too have urachal cancer metasised to my lungs,  I would like to know if I can get into a drug trial for my stage four cancer.  I have been on Taxol and Carboplatin recently.  I was stable until this year when metastis occured into my lungs after 3 years and 7 months.  Now my cat scans show no improvement on this so am thinking of doing a chemo pill xeloda.  Do you know of anyone taking this and how successful it would be? Have to check with insurance company to see if it is covered.

RE: Urachal Mucinous Adenocarcinoma

by dianer57 - October 05 at 2:10 AM

Do you feel MD Anderson will be best for this cancer/

RE: Urachal Cancer

by dianer57 - August 01 at 5:29 PM

Hope to hear from  you.  I too have lung nodules and am going to start chemo.  Hopefully it will work.  Hard to decide which drugs to use as we are so rare.  Dianer

RE: Urachal Cancer

by dianer57 - August 01 at 5:10 PM

On Feb 14, 2012 5:50 PM iceberg wrote:

On Feb 12, 2011 1:05 AM mos1502 wrote:

On Jan 31, 2011 1:12 chukman wrote:

and it is T2 went through the wall of bladder but no tissue involvement or other organs yet


I'm delighted to finally find a site where I can meet other people who have urachal carcinoma. I am a 37 year old mum of one from Ireland and I was initally diagnosed with Urchal Carcinoma in May 2009 at which point I had surgery to remove the tumor from my bladder with a partial cystectomy in June 2009 and then my umbilicus was also removed in September 2009, which was all clear and there was no lymph nodes involved. I was then left waiting for my urologist and other doctors to decide on whether I was to have adjuvent chemo or radiation therapy. They contacted the MD Anderson Clinic and were basically told that they wouldn't give adjuvent treatments unless I was part of a clinical trial. Although one of the consultants involved in a meeting that was orgainised said that I was at a very high risk of it returning and that he would be happy to give me radiation therapy but my urologist failed to heed his advice. I continuted to have cystocopys every three months along with ultrasound and ct scans . Then in November 2010 even though I was not suffering from any symptoms what so ever my world came crashing down when I was informed that I now had nodules on my lungs (which were first spoted on an earlier ct scan in May 2010 but never reported) and that I was now at stage 4 metastic urchal carcinoma and that it wasn't curable and if I was lucky I would get three to five years left. I started chemo in December 2010 and I am currently on my fourth session which is a mixture of the Irinotecan and xeloda (capecitabine). I've been lucky so far with the side effects in that I'm only suffering from tiredness with no sickness and my hair started falling out just before Christmas which has now been shaved very short, but other than that I am well. I go for a ct scan in March to see if the chemo has any kind of effect and that the nodules have hopefully slowed down or shrunk. I find that it is very scary knowing how rare it is that its hard to find out any information on it let alone a forum like this which is great.

I hope that all of you that have posted are doing well in your treatments and any advice would be greatly appreciated. Take Care x

I am sorry to hear that the lung spots were not addressed... I am now free from Urachal cancer for over 15 years.  I had done cystoscopies faithfully a few times a year for the first couple than yearly until 10 yrs, not every other year.   Also got ct scans with days of each other as back up, but have not since 10 yrs.. maybe I should continue that piece too.

I do pray that the nodules have shrunk!!

How did the nodules shrink with your medication given by chemo?  I am starting soon for many in my lungs on Monday,  Wanting to hear good news.

Uracal carcinoma

by dianer57 - July 27 at 8:18 PM

I would like to hear from anyone that has survived this cancer.  Uracal ademacarcinoma is a very rare cancer. I am surviving 3 yars 8 months but have both lungs affected with nodules now.  Would like to hear what treatments have worked for you few out there.  Thanks  Diane

On Dec 09, 2013 12:41 AM Steve48 wrote:

Hi all I had a kidney stone back in September this year and was taken to hospital and a scan showed the stone had moved its way down in my bladder, scan also showed a urachal cyst on the dome of my bladder, Dr said kidney stones are my best friend as it was only about 8mm in size so got it very early, had it removed end of September using keyhole surgery, Dr did not remove all the umbilical tube as at the time it was not known it was cancer, it turned out to be stage 3 with muscular invasion and had gone into the lining of the bladder, I had a good size chunk of the bladder removed ( peeing a lot more now) had good clear margins then went for pet scan which thank god was also all clear, had to go back in for more surgery to remove the rest of the umbilical tube and the belly button, I am now in recovery from that surgery and have been told I will get a pic put in end of this week and begin chemo next Tuesday for a period of 6 months with two days on a pump every two weeks, they have not told me what chemo it will be but originally it was going to be a experimental drug from the states that a professor was using in a cancer clinic and was having good results, but to get it they would need to boost my bone marrow, this was all knocked back due to funding as the booster cost $2000 a pop and as the medical board stated that there was no real proof it will work so they said no, so now I will be done using the regime for bowel cancer has there been any one out there that have similar outcome, I had read that there is only about 350 recorded cases in the english language, my hospital has never had this type of cancer presented before and do not have much to go on, I know it is an aggressive and invasive type of cancer and don't want it to return and want to do what ever it takes to make that happen

I also had urachal cancer with went into my bladder.  I had the surgery to remove both the urachal tube and a partial removal of my bladder and lymph nodes affected..  I had chemo treatments every three weeks for three times and am cancer free now for two years.  I give credit to prayers, God, the great surgeon, and oncologist treatments  .  I also have a good outlook on life as you have to be positive.  I know there are not many that have this type of cancer so not much research to look at.  My outcome is good so far.  Surgery was two years ago last November.  Chemo finished up in Jan.2012  Good Luck and keep up the fight.  Diane

I would go right away.  I had blood in my urine also and it was a bladder cancer.  They did not catch it with a urine test.  I had a cystoscopic exam .  This way they can rule it out or confirm if you need more done.  I was lucky I persisted in them testing as I should not have been bleeding.  No pain so I did not think it would be from the urethra.  I thought it was from the vagina somehow.  Good Luck.

Showing 1 - 10 of 14

Page 1 of 2


About dianer57

dianer57 has not shared any information about themselves. Send them a message to tell them you'd like to find out more about them or add them as a friend.

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