Mets Day 644: Q&A with someone new to Stage IV

I recently exchanged the following emails with someone who came across some of my posts.  I am re-posting this exchange (edited to delete names and other identifying info) in the hope that others in a similar situation might find it beneficial. 

The initial email to me said:


I also have urothelial carcinoma. I had my bladder removed in mid-2011. I did neoadjuvant chemotherapy with cisplatin. They just found a lymph node with cancer and I've been diagnosed with stage IV bladder cancer. They are recommending MVAC.


I responded with the following:

Thanks for the note.  I'm sorry to hear about your Dx.  I have a couple of questions and comments:

1.  Have you been seen by a major cancer center?  Getting their input is very important.  Where are you at, geographically?  I can give you contact info for cancer centers in DC, Baltimore, Philly, Chicago, and Houston. 

2.   I understand that you've had an RC and had neoadjuvant chemo, and are now faced with salvage chemo, and MVAC is being recommended.  As you know from my blog, I faced the same thing 6 months ago.  I consulted with doctors at Fox Chase, U. Chicago, NIH, and GW re my treatment options.  Because my node was under 1.5 cm on the short axis, I did not qualify for any clinical trial.  If your mets node is larger than that, then you may qualify for a trial.  There are some very provocative things going on with gene therapy.  If a trial is an option, then I'd get together with a major cancer center and review the options available to you.  For me, because a trial was not (yet) available, the question for my doctors was whether to have salvage chemo or not.  NIH and GW recommended dose dense MVAC.  They said that it was more successful and less toxic than regular MVAC.  In my posts of September 2013, I explored the pros and cons of ddMVAC.  Talk with your doc about ddMVAC, as opposed to regular MVAC. 

3.  Are you the kind of person who wants to learn as much as you can, or would you rather do what your doctor says without any second guessing?  I'm the former, but my docs told me that I was the exception to the rule.  I think it's important to be well-informed, but also know your source.  Pay no attention to anything you hear from your well-meaning family and friends, or read on-line (including what I say), unless you can independently verify it by a trusted source.  This is especially true for alternative cancer therapies.  That being said, you are your own best advocate, and should be comfortable with what is being done to you.

4.  Stage IV BC will almost certainly kill you, as it will me.  The question is how aggressive you want to be to prolong your life.  Virtually all of the pain, suffering, and discomfort that you are going to experience will be the effects of the treatments, and not the cancer itself. Treatments can double your remaining life (or more), but there is a cost to quality of life.  Only you can decide whether the impairment of the quality of life is worth the cost. 

5.  My faith has helped me immensely.  If you have a church group, draw them in.  Family is a tremendous comfort, too.  I found that BC clarified my priorities and strengthened my relationship with my family, and with God.  In that way, it has been a blessing.

I received the following response:

Thanks for your responses regarding my situation. What were the side effects while taking ddMVAC and how long did you take it?

I replied as follows:

I did three rounds of ddMVAC.  Each round lasts two weeks.  I blogged about what it involves and the side effects.  See  my entries in September and October 2013, starting at http://kwbcancerblog.blogspot.com/2013/09/mets-day-530-ddmvac-day-1.html.  The ddMVAC chemo was much harder than GemCis.  Each dose wiped me out for 7-10 days.  Total fatigue, GI tract thrashed, mouth sores, total hair loss, some neuropathy in my feet, and shortness of breath.  Nausea was kept in check with anti-emetics.  My NIH doctor told me that "I tolerated the chemo well", which was news to me.  She pointed out that I did not require hospitalization or transfusions, which about 35-50% of ddMVAC patients do.  Apparently, the older the patient, the greater the risks (I'm 51, so I'm at the younger end of the BC spectrum).  I pulled the plug after 3 rounds of ddMVAC (the original plan was 6 rounds), because I felt the side effects were not worth the potential benefits.  Two and a half months after I stopped it, I've got no further growth of the mets in my neck.  My docs can't say for sure if it was due to the ddMVAC or maybe that's what would have happened anyway, but right now I'm taking a wait-and-see approach.  

From what I read and my docs told me, ddMVAC is significantly less toxic that regular MVAC.  I summarized some of the studies comparing ddMVAC to regular MVAC in my Sept. 16 blog, http://kwbcancerblog.blogspot.com/2013/09/mats-day-522-my-gw-oncologist-says-to.html.  My follow-up posts in later September contain more info about the pros and cons of ddMVAC.  For me, the question was never between regular MVAC and ddMVAC, since the data clearly favored ddMVAC, and my docs never recommended regular MVAC.  The issue for me was ddMVAC or nothing.  It was a tough call, and my pulling the plug on it after three rounds reflected my lack of total commitment to it.  It's an individual decision, and I can't tell you what you should do.  All I can do is share my experience, and hope it helps.  

I received the following response:  

You have been a tremendous help in making this important life decision. Thank you so much.