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Mitomycin Side effects very bad

Markdb0
0 Recommendations

Anyone else have bad reaction to Mitomycin?

Male, age 43, Mitomycin give 09-10-09 direct into bladder. Extreme burning Pain urination, Blood in the urine, Blood Clots, Sluthing, Pain from the bladder down to the tip. This has not stopped since day 1 (40+) days.
Doctor confused as to why all the above symptoms.
Given the following meds without helping:
For Burning:
Pheiazopyridine
Prosed
Darpaz
For Tissue Growth:
Elmiron
For Pain: (Stopped all Pain Meds, nothing helps)
Vicodine
Diluid 6mg 4-5 hour


Thank you,
Markdb0

Explore topics in this discussion:

Cancer Surgery Hematuria Pain Spinal fusion Advil Levaquin Docetaxel Bladder cancer

12 replies

LadyJane123

My goodness that sounds bad. I have no answer for you but perhpas someone else will chime in. There are a few that have been treated with MitC.

I hope you can get some relief soon Mark

Karego

Please give us a little history of any other treatment you might have received since diagnosis. Have you had a 2nd opinion, and do your have copies of your pathology from your biopsies? We believe we must be advocates for our own best treatment, so we encourage you to learn about bladder cancer and what the standard treatments are for the various stages. To support you fully, we need to know what your level of risk is at the present time. Have you had any BCG treatments?
Karego

Markdb0

2 TURBT's have been peformed. TURBT number 2 is when the MMC was used, one treatment.
No BGC treatments, Low Grade T2 is the pathology report after each TURBT.
Have had the 2nd opinion. Pretty much said this is the side effects?... 2 nd Doc ordered, Full Urine Screen, Blood Work and CT URO Scan 3 Phase for this Sunday The pain is 9 of 10 Scale. Been to the ER, 1 st URO said side effects deal with it.
Anyone want to reccomend a URO in Northern Virginia??

Tagmike

Mark where are you going now? Is it some place local or are going into DC for treatment. I noticed there is a CTCA not far from your location. Not up there with MDA or the Cleveland clinic but generally competent and caring. I agree with Cheyenne that a second opinion is necessary.

Moonerj

I had 1 treatment of MMC after my last Turbt.
The stuff made me extremely sick to my stomach for over 24 hours. That was the only side effect I had.
You need to go to a Uro located at a cancer hospital for another opinion. Something is not right. MMC should not be giving these side effects for 40 days, especially after only 1 treatment.
I wish you all the best, and please keep us posted on how you make out.
Jack

Markdb0

A big Thank you to everyone for the information.
The 2nd Opinion Doc will be handling my care as of Last Thursday.
As far as a CTCA, there is a new center less than 1 mile from my home, Lake Manassas. Like the Judaical system, you have no idea how it works until you need it.

Once again a big Thank you to all.

nancynursez637

I would get another opinion, sounds like ot me you are allergic to something. When i had a spinal fusion in 1969, I had a catheter in for 10 days, when they took it out, I sloughed out my entire bladder lining and urethral lining. Talk about peein over a hot knife!!! Went on for about 7 days, and then some on going irritation issues for a month. Sounds similar, but I would definitely get a second opinion, and I wonder if you need a cysto?

suzywong

hi
i had a course of mytimycin and had no symptoms at all
a second opinion is the way forward
i was the oposite to you i reacted to the bcg
take care x

R2D2

Mark-I'm here in Dumfries, Virginia (wife's house-I've got another place in New Jersey). I've had CIS for the past 10 years and have been through a lot of different treatments, including MMC. Had a course of that stuff last Fall when I went out to see a bladder cancer specialist in Phoenix. Total of 6 instillations. He also used Docetaxel. A lot of pain, blood in the urine, etc. Lasted for about a month but gradually cleared up. There's no doubt the side effects of this stuff can be quite bad. How many instillations of MMC have you had? Seems a little unusual for it to last this long unless September was the end of the usual 6 week course of instillation.

I also had to go to the emergency room (Easter day 2 years ago at Prince William Hospital) it was so bad. They gave me an antibiotic (Levaquin) which cleared up most of the problem but not completely. Had to have the doc out in Phoenix do a hydro-extension of the bladder since the bladder had contracted to a point I could only hold 1-2 ounces. But I've had a lot of BCG which was the build-up to all of this. Don't know if you have had the BCG or not.

Don't have a doc here in Northern Virginia. I had one in Rockville, Md. who did a lot of the work early on but when the CIS recurred he said he couldn't do anything more and recommended I have the bladder removed. That was 2 1/2 years ago and I've resisted that path since the CIS is not invasive at this point. Looking at other treatment options at this point.

I'm online with regular e-mail if there is anything you would like to discuss. One of the things that is pretty important after these types of treatments is to watch what you eat and drink. There are some foods out there that will drive the bladder nuts such as coffee and alcohol. Pizza with hot peppers will also get the bladder's attention! I found that Alka Seltzer also helped. The doctor in Phoenix recommended it since it neutralizes the acid that makes the bladder react to food and drink. I used that lemon-lime flavored Alka Seltzer and that helped quite a bit. My other doc recommended bi-carb of soda which is the same thing as the Alka Seltzer basically but tastes pretty bad. Keeping a normal PH level is important. You can pick up some test strips at the drug store or online, which is where I bought mine. If the urine doesn't have a normal PH level (about 5.5/6.0) the bladder will react negatively.

Hope some of the information is useful. Good luck to you on your journey!

CM381

I am in almost similar situation. Had very benign growth that when removed had cancer cells but muscle layer was not invaded.
After surgery on September 30 and mitomycin C treatment for 2 hrs post-surgery, have had pain on urination, increased urgency and frequency even after 40 days. Two weeks after surgery hematuria stopped. On 38th day noticed bleeding and clots and had it scoped a day later and severe inflammation, blood clots, and pain. Most painful cystoscopy!
Given drugs that you find ineffective! I am confused and helpless. Never had BCG, but MD says MMC allergy may be causing this reaction for 40 days! Do let me know when your situation improved

R2D2

I had 6 weekly instillations of the MMC. Each instillation was an hour. That was immediately followed by another hour of Docetaxel. Two hours of any of this stuff will cause the bladder to become inflammed and create a lot of pain when urinating. In my particular case the weekly sessions made the bladder get worse. But after the last one (6th session) it took a month to stop seeing blood. These blood clots can sometimes break off just like any scab on the skin and cause the stuff to start bleeding again. But that usually gets less and less noticeable. All this was about a year ago and it seems to me that after 5-6 weeks the symptoms were just about gone. However, even after 2-3 months once in a while I would pass a blood clot.

That said, I had received 69 instillations of BCG over a period of about 3-4 years (2001-2005). All of that really did a number on my bladder and caused severe contraction with resulting pain. That condition deteriorated and did not get any better. I finally had to see a well known bladder cancer specialist (Dr. Donald Lamm) in Phoenix. After "stretching" the bladder (hydro-extension) the pain subsided and quantity of urine I was able to hold gradually got back to normal. One of the guidelines I have used is whether or not things seem to get a little better each day. At least if that is the case you know that eventually you will get back to almost normal. If you don't improve a little each day then there is something wrong since the bladder will generally bounce back even if slowly. Also a penile stricture is also possible. That is where the catheter may have scrapped the inside of the urethra and scar tissue is forming. You can google penile strictures for additional info.

Like I said previousaly nutralizing the urine and getting the ph level normal was important. All of my doctors have recommended either the bicarbonate of soda or the Alka Seltzer. My doctor in Phoenix told me I "should buy stock" in Alka Seltzer. I think they recommended I take it 3-4 times a day. The coffee was another big trigger that would set the bladder off so I gave up coffee for a while. Lots of water. There's no sugar coating these treatments-they are bad stuff. I really sympathize with you! My first doctor pumped me with so BCG that eventually he had to admit there was probably nerve damage to the bladder. The doctor in Phoenix said I had "way too much BCG". So listen to what your body is telling you. I found the test strips you can get to dip in the urine very helpful since they measure a lot of different things including the amount of blood in the urine and the ph levels. Also any protein in the urine along with other urine tests. Getting that test strip to come up normal was a challenge! But I knew I was recuperating when I saw fewer and fewer black dots on the test for blood in the urine. Eventually you couldn't get a positive reading. Using an anti-inflammatory such as Advil was also recommended. Hope some of this is helpful.

Burb

I've had 7 MMC treatments this year. I was very sore and crampy. It burned when I urinated and it seems like I urinate more often than I use to. It made me tired as well. Sometimes I think getting up to go to the bathroom added to the tiredness. I thought THAT was bad.

I didn't have anything like you are describing.

I am so sorry for you. As it was mentioned above, perhaps you are allergic to the medication.

Let us know what happens. You poor guy.

Burb

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