Chemo for Urachal Cancer

Thank You and good luck.

Hi Betsy, I am Dan's brother. What kind of cancer cells does your husband have? My tumor was 1/3 adenocarcinoma and 2/3 sarcomatoid. The latter cell type is so rare that neither thepathologist at Johns Hopkins, nor my oncologist have ever heard of this cancer type in urachal tumors. My oncologist recommended 4 cycles of chemo regimen: Fluorouracil, Leucovorin, Gemcitabine, and Cisplatin. This is the same regimen that Dr. Radtke is using in one of her trials. Is this what your husband is on? If not, what was he prescribed? I am going to NEw York to see a Dr. Jonathan Rosenberg this week as Memorial Sloan Kettering Cancer Center for a consultation. Noone has yet told me with conviction that this or another chemo regimen WILL work. It might, and I will give it a try, pending the consultation. I hope your husband is ok. Phil

Hi Phil,

I would say welcome, but no one wants to have the connection we have. :)  Jim's tumor was adenocarcinoma of enteric type.  I've heard of sarcomatoid tumors, but they are rare and I don't know that I've ever seen one of mixed type like yours. 

Yes, we are doing that regimen.  Jim just completed round #2 and is recovering a bit faster because he was managed better with hydration.  It is a harsh regimen.  He is 50 and in great shape, but it has kicked the snot out of him.  He's doing ok, though.

I do not think we will ever get an answer about whether it works, but this regimen has the most data for a response.  Unfortunately, with these rare cancers, we can go to 10 different doctors and get 10 different opinions, but at some point it comes down to how aggressive YOU want to be.  There are never any guarantees, but I think this is our best shot.  Good luck with the consultations and let us know how it goes.  I'd be interested to hear what the Dr. at Sloan Kettering says.

On Mar 27, 2012 5:11 PM BetsyM wrote:

Hi Phil,

I would say welcome, but no one wants to have the connection we have. :)  Jim's tumor was adenocarcinoma of enteric type.  I've heard of sarcomatoid tumors, but they are rare and I don't know that I've ever seen one of mixed type like yours. 

Yes, we are doing that regimen.  Jim just completed round #2 and is recovering a bit faster because he was managed better with hydration.  It is a harsh regimen.  He is 50 and in great shape, but it has kicked the snot out of him.  He's doing ok, though.

I do not think we will ever get an answer about whether it works, but this regimen has the most data for a response.  Unfortunately, with these rare cancers, we can go to 10 different doctors and get 10 different opinions, but at some point it comes down to how aggressive YOU want to be.  There are never any guarantees, but I think this is our best shot.  Good luck with the consultations and let us know how it goes.  I'd be interested to hear what the Dr. at Sloan Kettering says.

Dear BetsyM

Good luck and strength to Jim and you. Just gotta out of the hospital some weeks ago myself, had a lung operation and my left upper leg bone replaced by an implant.

I went thru 3 cycles of "only" cisplatin and gemzar so I can feel for Jim somewhat, sounds like he is a strong man. 

Some question:

It seems that MD Anderson/Siefker-Radtke promote this chemo regimen as an adjuvent treatment (preemptive) ? They do not promote surgery/radiation as a primary "weapon" an chemo as the last option? How many cycles will Jim have to go thru? Thanks for any feedback you can give me.

Cheers and be well

Mark

Hi Mark,

Glad you are doing well after your recent surgeries.  Hang tough. 

Adjuvant chemo is done after/"in addition to" the tumor resection surgery, which MDAnderson definitely does.  Jim had his surgery here in Utah, then got the chemo regimen from Dr. Siefker and is having it done here.  She recommends 5-6 rounds.  As for "preemptive" chemo, that is usually called neoadjuvant. 

I hope you are able to stay ahead of your disease.  I do cancer research and we were just discussing how many people today are living with cancer, almost as a chronic disease, thanks to new therapies that while they can't "cure' can help patients live much longer. 

Be well - Enjoy Today!!

Hi Betsy,

I met with Dr. Jonathan Rosenberg at MSKCC yesterday.  He recommended a 6 cycle chemotherapy regimen of Ifosmatide, Paclitaxel and Cisplatin, citing a 2007 study by MSKCC where 4/11 patients with metastatic urachal adenocarcinoma responded to this regime. (Urology (69) 2, 2007).  He also said the Ifosfamide would better target the sarcomatoid variant althoughno study exists to prove that in urachal cancer. He also saysthatthis regimen is less toxic than the gemcysFU regimen.

My Oncologist in Montreal disagreed with MSKCC's recommendation.

Now I'm really confused.  The sooner I start the better chance I have that chemo works, and I'd just like to get this done.

I'm going to see another oncologist at the Mtl General Hospital tomorrow, and I'm told that she's going to recommend FOLFOX!  Like I need another option with little supporting data.

Any suggestions?

Hi Phil,  I so understand your confusion.  We have been on that same roller coaster.  I am not a clinician, so I don't want to give medical advice.  All I know is that, as an adenocarcinoma of enteric type, Jim's tumor is more like a colon tumor than a bladder cancer, so a colon regimen like FOLFOX is one we considered.  We decided to go with Dr. Seifker's regimen because a) she has treated more patients in the past 5 years than anyone else in the country and saw a 30% response rate and b) it is a combination of bladder and colon, since the tumor is like colon at the cellular level, but it arose from the urachus, which gave rise to the bladder in embryonic development.

As for your case, I'm sorry, I don't know much about the kind of tumor you have, nor do I know much about the ifosfamide, but if it is better at treating the sarcomatoid, I would do that regimen. 

I'm not sure if you or your brother said, but do you have measurable metastases?  Jim has nodules in his lungs but we don't know if they are mets or not.  We are doing the chemo as adjuvant therapy and to address a very narrow surgical margin.

Hang in there.

I just read the new post you created and see that you had stage 3 tumor and negative lymph nodes. That is great news.  Some people take a wait-and-see approach if there is no evidence of disease, but that was not acceptable to us because of the narrow margin - where Jim's tumor had invaded soft tissue, so did go through the muscularis.

How aggressive you are with the chemo ends up being a guessing game on preventing recurrence, which we know this has a high rate of.

I wish I could be more helpful.  Please post any time, though.  It helps just knowing there are others in the same crazy boat.

Thanks Betsy. My urologist spoke w Dr. Radtke at MDA yesterday, and Dr. Radtke agreed with the ifosfamide regimen! Now, I have to make sure that I have buy in from my oncologist in Montreal. We're dealing with personalities now, not medical science. There is no sign of metastasis of the disease, thank goodness.

I'm so glad you were able to get Dr. Seifker's opinion.  We met with her in person and we found her to be straight-forward without a lot of "ego."  We trust her.