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My Eight Weeks of Mitomycin Therapy
My object here is to share with those that want to read this, my experiences with Mitomycin C therapy. Hopefully, anyone that is faced with the six to eight weeks of therapy will gain some knowledge and support from my experiences. I do this mainly because when I was faced with starting my therapy, many individuals here shared their experiences and support. This will be my effort to return the favor. I also understand my post is not unique.
Let me start off with giving you some history of my BC. I was diagnosed in July of 2005 with a large (bush shaped) tumor that my Uro said was about the size of a golf ball. The classification came back T1G2 (if I have my terminology correct). All I remember my Uro saying that it was non-invasive and the muscle tissue he took had no abnormal pathology. He also told me he did a chemo wash while I was under the anesthesia (I haven’t seen anyone else have that).
I then started my quarterly cysto. (I love the expression here of “poke and peek”). The first year he found on two occasions small polyps that he removed in the office (i.e. “snip and zap”). After over a year of clean cysto, January’s poke and peek found four polyps. I had TURB number two on Feb. 5th. The result if I got this right was TaG1. However my Uro recommended that we do a round of Mitomycin therapy. Yesterday (Feb. 25th) was round one.
To say the least, I was apprehensive and scared. To make matters worse, the Uro’s office failed to order the drugs and wanted to reschedule. After several phone calls to the office manager and my insurance company, we overcame the obstacle and I had my treatment. To my surprise, I had very little discomfort with the insertion of the catheter and the chemo. I went home and did the chicken rotisserie turning every 15 minutes. During the evening I drank for me an excessive amount of water. I experienced very little burning when peeing, but did have some spasm (not excessive or intolerable) during the evening. The worse part was that I was up and down all night going to the bathroom. I feel very fortunate that I tolerated the drugs with very little effects. Hopefully, the next seven rounds will be the same. I will keep you informed. Chuck ::)
dx – Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/106 Replies-
Week two:
I went in yesterday for my second treatment of Mitomycin C. I got a different nurse and I have to say she was more experienced and she had fewer problems inserting the catheter. Went home and did my chicken rotisserie for about hour and a half. The evening went well with little burning when peeing, but again had a few bladder spasm and they have continued this morning. Hopefully week two will go as well as week one.
During week one, two days after my treatment, I experienced what I thought was a reaction. I’m now not sure it was. In any case, I felt extremely tired and had minor flu like symptoms (sore throat, body aches, etc.). This lasted less than 48 hours. By the weekend, my energy returned to normal and I felt good. Perhaps my reaction during week two will determine if what I felt was a reaction to the chemo. During the week I passed a few blood clots when peeing. I think that is also normal and to be expected. All in all, I feel everything is going well. :D
dx – Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/10
Had immediate instillations of mitomycin after both my TURBC in Apr 05 and Oct 06.. both TaG1… then tried 6 instillations of 40mg in Nov 06. Did the “rotiserie”… as we are now calling the rolling around… BUT, after the 5th instillation the burning was so severe that my Uro and I agreed to stop. I tried a maintenance series of 3 instillations in May 07, but quit after 2… burning was nasty. Have had 2 clean cystos since then… ;D
It is nasty stuff and I think different people react diffently. Of course, that full dose of 40mg may be too much for me. Not sure what I will do if I need some more prevention… maybe BCG is the way to go… will discuss with my Uro.. ???
Retired USAF Col, father of 4, grandfather of 9, greatgrandfather of one.. Enjoying life to the max…
I’m sorry Rosemary…I don’t know why I called you Barb :-[
dx – Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/10
Barb,
My Uro did not tell me nor did I think to ask what he used with my first TURB. On Monday he placed the Mitomycin directly in the bladder and Yes, I did the rotisserie just like I read those of you that have done the BCG treatment. I was told to try to hold it at least an hour and preferable longer. What I have read that some treatments of Mitomycin C can be of different strengths. My Uro said he would be using 20mg which I understand is the lesser dose. Perhaps your treatment at the hospital was a higher dose. I also have read that there are several different drugs that are used for chemo wash, but the Mitomycin is the old “tried and true” drug of choice by many Urologists. Hopefully, I have answered your questions. Thanks for the support.
Chuck
dx – Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/10
[quote author=Rosemary link=topic=1895.msg14055#msg14055 date=1204070220]
The other thing that confuses me a little (and forgive my ignorance, I had Mitomycin treatments but only in the hospital under anesthesia)is why the rotisserie???? Is that standard procedure with Mitomycin…?
[/quote]I had the 8 Mitiomycin C treatments instead of BCG. I was not told to play rotisserie… But then, who says that there was anything standard about my experience :P.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
Chuck,
I’m a tad bit confused. I was thinking that a “chemo wash” meant Mitomycin C….
That is just how I’ve comprehended that terminology over the years. If your “chemo wash” after TURB was NOT Mitomycin, then what was it???
The other thing that confuses me a little (and forgive my ignorance, I had Mitomycin treatments but only in the hospital under anesthesia)is why the rotisserie???? Is that standard procedure with Mitomycin…?
Like I said, I don’t know. When I woke up in the hospital and was being administered the Mito, the nurses were all dressed up in plastic like they were getting ready to board the space shuttle….Am I to understand that you had to HOLD the Mitomycin in the bladder such as we do with BCG’s????
Thanks for clarifying,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Sign In to reply.
