Back from Newfoundland !

[Cher-L]

Well back from a whirlwind 6 days ! Mary sue I took it easy but walked a lot ! I am three weeks post TURBT. I did not lift my suitcase or anything else heavy. I have no pain but walking which I usually do with ease tired me. If you have ever been to St.Johns its very hilly so lots of up and downs. I do find my bladder has to be emptied more . I have had no …accidents..but am very aware of where to find toilets . I also bought bladder leak pads just in case . Man I feel like an old women ;). I am guessing this will continue for a while. Does it let up ?

I go in August 3rd for cystoscopy and then onto BCG treatments.

Any advice or warnings ?

Cheryl

[marysue]

Hi Cher-L:

I’m glad that you had a good trip to Newfoundland.  You are far braver than I to travel 3 weeks post TURBT.  Please keep in mind that it takes time to get your strength back from this surgery.  Your body has been through a lot.  Even though we don’t have abdominal incisions with TURBT surgeries we still have to get over the anethestic and any other drugs we had plus our poor bladders have to heal the wounds inside which takes a few weeks.  I nearly always wear bladder pads especially after TURBTs, cysto checks and BCG treatments.  I don’t have incontinence right now as I’m in between treatment sets but still wear one when I go out because I still get the occasional bladder spasm and have cut it close a few times making it to the toilet. I’d rather lose the pee into a pad than suffer wet clothes when out.

You should find that your bladder capacity increasing as you heal from the surgery. I found that I had much reduced bladder capacity this time around and again I blame it on the Epirubicin.  I’m at normal capacity now after taking a break from treatments and healing from all the inflammation.

For BCG treatments I suggest the following:

1) Take it one treatment at a time to see how you are doing before embarking on any big plans like future travel etc.  Fatigue is a common side effect but it subsides once treatments are over.  That being said you may experience lingering fatigue if you are scheduled to do the induction set of 6 followed by the 3 sets of maintenance.  Be prepared to slow down if tired and give yourself permission to take that extra nap if needed.  I always find that I need an afternoon snooze the next day.

2) Side effects and their intensity vary widely from person to person.  I know of people that have had very few side effects, some moderate and others like myself it is quite the rodeo.  The main serious side effects to watch out for are high fever, severe chills, blood in the urine that doesn’t clear up a few hours post treatment, intense bladder pain and/or spasms.  Other side effects can be headache, muscle and joint pain.  I always feel like I have a good dose of the flu post treatment.  I didn’t have too much bladder trouble the first two times but this time around I have had issues with sever bladder pain and inflammation.  Just because it happened to me doesn’t mean it will happen to you.  I consider myself an anomaly when it comes to side effects.  This time around I truly believe it was the Epirubicin post op that set me up for the bladder trouble.  Ask what to do or who to contact if you have serious side effects.  If in doubt about having the next treatment due to questionable side effects always contact your uro or the BCG clinic before having the next treatment.

3) UTIs are a common problem during BCG treatments.  If you experience any UTI type symptoms get checked out before the next treatment.  If you do have a UTI you will most likely have to take a round of antibiotics and postpone BCG until the UTI clears.  Postponing treatments doesn’t usually affect the overall outcome.

4) Being female yeast infections can be a problem as well.  I tend to get both UTI and yeast infections together.  Treat the yeast infection before the next treatment.  Ask about postponing a treatment if you are sore and inflamed from the yeast infection.  I had to do that during my second maintenance in June 2010.  The nurse told me that it wouldn’t affect the outcome.

5) For females, you may find that the BCG irritates your lady parts.  I always pour cool water over myself as I’m going pee.  Sounds kinky I know but it helps.  That and washing the area with mild soap and rinsing well seems to ease the inflammation.  Many of  us gals use a diaper cream or some other type of gentle skin cream to ease/prevent skin irritation.  Wash your hands thoroughly afterwards.

6) Don’t douche while doing BCG.  I know this practice is not as common as it once was, but if you do this it increases the risk for UTI.

7) I strongly recommend wearing a pad if you are going to the clinic and leaving the clinic with the BCG inside you.  This way if you can’t hold the drug you won’t soak or contaminate your clothes or the car upholstery.  I always wear a pad during BCG treatment sessions as I tend to leak after treatment and don’t want to worry about being caught when out and about.

8) If your side effects should become troublesome, talk to your uro about reducing the dosage of the BCG.  The usual is to try to get through the induction set of 6 at full strength if possible and then if needed reduce the dosage for the maintenance treatments.  But many of us have had to change that up.  Sometimes people have spaced out their treatments.  While not ideal, this is better than nothing.  For myself, I have postponed my second set of maintenance BCG until the fall.  I had an awful lot of inflammation in my bladder.  April and May were not fun.  Since I was still feeling pretty crappy at the beginning of June I made the executive decision to postpone any future treatments until after my September cysto and discussion with my uro.  I have full plans to give BCG another go if I’m clear of cancer and the inflammation is healed and my uro approves.  I always emphasize on having a heart to heart discussion with your uro if BCG is not going well for you and you feel that you need to change things up.

I think this is most of what I’ve discovered while doing BCG treatments.  I’ve had 28 to date and am supposed to try to do 6 more in 2 sets of 3 each.  It is a big learning curve.  Best of luck and don’t hesitate to ask any questions.  (((HUGS)))

[Scott D]

Do you both talk funny now?

[Joey M]

I’ve seen inflammation of the bladder mentioned a couple of times as a possible side effect of BCG.  How to you know that your bladder is inflamed?  Just had my second BCG treatment today.

[Cher-L]

Please let me know how your treatments go. I am behind you here but will most likely be starting them soon. I think everyone has a different experience some seem to have no problems and others do. I think BCG treatments like chemo and radiation which I have had both for another cancer are cumulative.  I’m new to BC so just navigating myself here .

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