Patient Story

By Paul Carr

I will start this story on the date of 10 May, 1983. This is the day I stopped smoking after 20 years at 1 ½ packs of cigarettes per day. I had tried in the past but didn’t have an incentive. I wanted to feel healthier, breathe better and just feel better about myself. I chose cold turkey this time, and it did eventually work. I was having some withdrawals, and had to come up with an idea to help myself along, and it was jogging. I started jogging in late 1983. I felt jogging would aid in cleaning out my lungs at a quicker pace in order to get over the cravings that I was experiencing. I did start feeling better, breathing easier, and loosing weight. o I decided to expand my experience into running. I ran for about 6 months before someone got me interested in 10k’s. I ran in about 6 10k’s when I felt I needed something more, so I started training for the 1988 Los Angeles Marathon. I trained for about 10 months, 6 of those months with a friend and 4 with a group that was specifically training for the marathon. I was able to get my time down to a  9 minute mile. About a month before the marathon, I was really pushing myself, running every day, trying to get under the 9 minute mode, periodically experiencing some pinkness in my urine. I was told by the running group’s leader, not to worry about that, all runner’s experience some bleeding  in their urine, as the pounding causes it. And then it happened. About 1 month before the marathon, I had ran for about 2 miles, and had to stop to urinate, just couldn’t hold it. I found a bathroom, and pee’d the thickest reddest bloodiest urine I had ever seen in my life.  I thought I was bleeding internally. I turned white as a ghost. The bleeding only lasted about 6 hrs. I went to the dr. and he suggested possible kidney stones, so he sent me to a urologist to be checked out under Pacific Care, an HMO. This dr. had me do an IVP to check me for possible kidney stones. In the meantime, I ran the marathon, pee’d blood like a sive, and finished in 4hrs and 35min’s. I got the results back from the IVP and they were negative. The urologist wanted me to come back for more testing, and I was told about something called a ‘cysto’. Because I was uninformed and ‘scared to death’, I blew it off as passing a kidney stone (as I had experienced stones 2 times in the past) and didn’t return to the dr. I continued to run & bleed. Finally in 1990, I decided to try going to the dr. once more. Again, I underwent an IVP and it proved negative, so I went the next step, and got a ‘cysto’. This was the first time a scope was ever inserted into me. I was really scared, and didn’t know what to expect. It wasn’t that bad after the check up was over, but the news the dr. told me was pretty frightening. He told me that I had a couple of large tumor’s inside of the wall’s of my bladder, about the size of quarter’s, that had to be operated on and sent out for biopsy. I had my operation in 1991 and the results came back Ta & T0 which were low grade tumor’s. I also received BCG treatments following the surgery. The tumor’s came back about a year later, …to date, I have had 8 operations, 6 of which I had BCG treatments, 1 turned out to be scar tissue, and 1 (the latest in March 1999) with the use of Valstar.

Experience with Valstar

In late 1997 to early 1998, I was asked to participate in a study group, using a new chemotherapy called  AD-32. Because I was interested in new approaches (as the old one’s seemed not to work), I volunteered to be a guinea pig. o my chagrin, I was told that there was only enough medicine to accommodate 50% of the patients, and I lost the ‘coin toss’, so I continued on the study but with out the AD-32. This consisted of a blood test, and a colon check everytime I came in for a cysto. Around January of 1999, I had my quarterly checkup and was told I had a couple of spots.  I was told by my urologist that AD-32 was made available by the FDA and was named Valstar. My urologist didn’t hesitate to approve me for it, as he was on a Valstar board during the studies. I had my surgery March 1999, and had my first dose of Valstar the day after.

Valstar instillation #1.
This letter was edited to just show my personal experience with the first of six installations of Valstar. The next five instillation’s to be on Wednesday’s at the same hospital as I just found out.

March 16, 1999, I went into the hospital at 7:30am for a 9:30 operation on Tuesday. I didn’t eat after 8pm the night before…..which was soup as I didn’t want a lot on my stomach….anyhow, the operation went as well as can be expected. The Dr. went in for 2 small spots, and found a few more, so he took them also. I was to get Valstar on Wednesday morning at 8am and keep it in for 90min and urinate a couple of times and I could go. Breakfast came at 8am, the same time Valstar was scheduled. Of course I wouldn’t eat/drink it as I would get the Valstar at that time and I already had an IV going thru me causing a steady flow of urination. Could you imagine trying to hold in a ‘full’ bladder of Valstar + an IV + all the coffee, juice, water, etc, etc.??  Silly them to not see something wrong with that!! (I have to say that I am a very easy going person, and don’t normally complain in public about things unless something is totally out of the ordinary and I can’t make up an excuse as to why it happened) Anyhow, the Valstar was instilled at syrup was hot as hell, oh was it hot, must have been a reaction of touching the raw areas of the operation.

I was having convulsions of the bladder if you can believe that!!  It was lucky that the catheter was plugged or I would have spewed it all over the place, as it was, the nurse had to mop up some that had leaked out of somewhere from me pushing so hard from the reaction. I was on my back and had to hold it for 15 min, right side 15 min, left side 15 min, stomach 15 min, and sit up for 15 min, (which is only 75min) so I had to fake it for the extra 15 min and roll here and there to finish it out. Anyhow, everytime I changed positions, I had a reaction of burning (did I mention the awful taste it left in my mouth, like metal/medicine.  That is some strong stuff.), I don’t know how I muffled my screams, but I’m sure the neighboring patient in bed #1 felt bad for me (except he was 81 and hard of hearing, so maybe he didn’t know I was in pain) I have never seen 90min go by so slowly. It was 10:55 am and I was pressing so hard on the ‘nurse’ button, I thought my thumb was going to go right thru the nurse/TV instrument.  Anyway, the nurse comes in at 10:59 and asks if everything is alright??  hehe……I said, “Yes, my 90min is up and I am ready to get rid of this medicine”..She finally got me unplugged and drained my bladder of that ‘wicked’ liquid. I was able to urinate 4 times before leaving at noon.

I will tell you, I have never had such a problem with BCG, probably since I had to wait for the bladder to heal before getting it. I would imagine I will go to the dr. in a week and get my 2nd of 6 installations (1 per week for 5 more weeks) and pray to god it doesn’t burn like it did, as they pour the stuff in and pull out the catheter and I hold it for 90 min. If I have a reaction without a plug, well.. I’m sure you could imagine.

Valstar instillation #2
The instillation  was done in the hospital this time (not like BCG in the dr.’s office) so I got there at 2pm and didn’t leave till 6pm, a little more paperwork and rocedures at a hospital! Anyhow,  I told them the story of the first instillation and related my reservations about taking the catheter out right after the instillation, as I as afraid of a reaction. The nurse said no problem, she called up my Dr. and got permission for a couple of pills, one to make me relax, and the other to stop bladder pasms. Anyhow, I felt minimal irritation from the Valstar this time, will see how a good night’s sleep goes…right, as I have to still urinate about every 2 1/2 to 3 hrs.

Valstar instillation #3
I changed my appointments to 10am rather than 2pm inorder to get out of there sooner so I could rest up before the ‘night’s sleep’, as it is sometimes hard to sleep at ight if I have the instillation too late. Anyhow, had a very nice nurse who had a sense of humor, which made it go very well. But due to some mess ups, it took from 10am to 3pm in the afternoon to get the instillation. It was a good thing that I was keeping up on everything,  as they had an old request for me to have BCG, I corrected them right away, and no record of me needing relaxing medicine, I showed them a copy of the Dr.’s instructions and got that taken care of. I did ask the head nurse about not following the instructions per Valstar re: leaving the catheter in with Valstar, and using Valstar the day after the operation, which both go against the directions that come with Valstar, and she said it was the Dr.s instructions for both of those items, she also said that some protocals change and there isn’t time to change the instructions in the packaging. Anyway, I did trust her words, but will confront the Dr. today, at my post-op in a couple of hours. Outside of that, everything went well at the hospital, they gave me lunch also,  (big deal)  it was cold after i finally finished turning around in bed.

Post op
It’s been two weeks since the operation, and I went in to my urologist for my post op, in order to get an ok to go back to work. The dr. signed me off as fit for work. I also took a little time to ask him about the directions on the Valstar vs. the way the hospital gave the Valstar. The dr. told me that he was on the board re: Valstar, so he was up on all the new methods of using Valstar, and the hospital was instructed to use the Valstar per his directions.

Valstar instillation # 4.
 Got to the hospital at 10:00 for my 10:30 appointment. Everything is pretty much going smooth now, as it is old hat! The only problem I ran up against was a little stinging on the instillation, and about 1hr into the rotating, I started to experience  a very uncomfortable fullness, so I could not relax anymore. The nurse offered the idea of urinating a small quantity out, and leaving the rest to finish up the 90 minutes, as i took up her advice after  about 10 minutes, and rotated the last 20 minutes with a 1/2 full bladder, seemed to work. Went back to work after being off for 2 weeks, and let me tell you, it was very hard to do a standing job after the combination of surgery, and 3 kemo’s, will be happy when all this is over, as I pray that I will be the “1 in 5 ” patients that experience a full recovery from Valstar!

Valstar instillation  #5
Instillation at the hospital on Wednesday, I wanted to say it is much easier now, as I’m sure it is cause the bladder has had a chance to heal. The one thing I thought I would pass on to you,  in case you are in my position, is that I had found that when turning from side to side and back to front etc, I did my sorest area last, which was laying on my stomach as that was where the operation took place (most of it) so I believe that by the time I turned to my stomach, the medicine was a little more diluted and not so strong as to burn so bad with the stomach position (Paul’s helpful hint of the day) .

Valstar instillation #6
It seemed like this last one was going like #4 which was a little hard to take. Seemed to take on a lot of water, which made it very uncomfortable. Was only able to keep most of it in for 1 hr. I had to pee out 100 cc’s to relieve the pressure, and proceed with the other 1/2 hr.  No real burning, just the pressure. When the time was finally up, I put another 600cc’s into it for a total of 700cc’s, which the nurse said was very much for the normal capacity of a bladder (which I forgot…thinking 500 total, maybe someone out there can fill me in)   🙂

Anyway, I have finally finished the series of this new Valstar, and 2 1/2 months I will get a poke and peek to see what is up!!!!!!!!! Cross your fingers for me all, as this is the 8th operation, and it is starting to stress my patience!!!!

Hope these letters have helped some of you out there, as I was hoping that my pain would be your gain!

On June 16, I will have my quarterly poke & peek, and will let you all know how it went. Just to advise, usually after the 3 month check up, the dr. will notice a redness. It is usually the 6 month check up that a spot occurs.

[Paul’s June poke and peek showed no sign of cancer].

On September 14th, 1999 Paul wrote:
Hi gang,
Had my quarterly poke & peek at 6 months after Valstar instillation, and the Dr. only saw what used to be a spot (puzzled him) but it looked like the skin had peeled off where it was. So, he will just keepan eye on it (so to speak…lol) and I will see him in 3 months!!!!!