Hi all

[Paul D]

Sorry to be so long away from the forum but life has been very busy which does take your mind away from BC for a while, started my latest round of Maintenance BCG last month and finish tomorrow. Have had better luck retaining the fluid and got to the 2 hour mark last week which was cause for celebration with the attending nurse, post BCG has been a nightmare for me with the shakes, fever and pain in the urethra aplenty but it all goes by the next day. I have been told if my bladder can’t cope with the BCG then it will be coming out which I have had many a sleepless night over. Have read all the post’s on which type of alternative to my dear bladder but I was only given one choice the ileal conduit or a shopping bag as it’s known here in Australia. It is only this year I have been having problems with treatment but after a lot of thought maybe my body is rejecting the BCG itself? I will hopefully have a long chat with the specialist next month when I go down to Brisbane (my main BC hospital) till then life goes on.
Love & Best Wishes to all,
Paul D

[Jack Moon]

Hi Paul
So sorry you are having such extreme side effects with the BCG maintenance treatments. My experience with BCG maintenance was the more treatments the more side effects, but like you the severity was gone with-in a day or 2. Reducing the dosage can be done as Dr Lamm in USA has proven through research, which does help with the side effects, a question you might ask in Brisbane.
Wishing you all the very best,
Jack

[Paul D]

Well all went reasonably well (hmm) on my last Maint BCG, I was left in the waiting room for half an hour by the reception staff while the nurses inside the treatment room where phoning my wife to see where I was, eventually a cleaner who I was talking to told the treatment room staff I was outside in reception(good start). The nurse assigned to carry out the procedure was the most disorganised nurse I have come across and was moving the instruments etc around with her elbows even though she had surgical gloves on? All went well with holding in so was pleased to be done for another year. Midnight came and I rushed up to the local A & E as I had a Urinary Tract infection and was in absolute agony, well six hours later I walked out a much relieved man, cause of the infection was I believe the nurse but can’t prove it but will have a chat with the nursing coordinator tomorrow. Bad experience but these things happen.
Love and Best Wishes to all,
Paul D

[Paul D]

Sorry Jack thanks for the post on my behalf and yes they will reduce the dosage to two thirds for my next maint BCG, this is after some tests the guys in Brisbane did on my last visit but too late to change this time.
Regards
Paul

[marysue]

Hi Paul:

Welcome back but sorry to learn of the BCG side effects. I’ve had 21 BCG treatments all together and the toughest for me was the second set (6 month) maintenance treatments in June 2011.

I too, had fever and chills and muscle ache so bad that the muscles screamed if I moved. I changed urologists around this time and my new guy had no hesitation about lowering the dose to 25% for the last three treatments. My first uro refused to believe me when I mentioned how tough the side effects were getting. It was still tough even with the reduced dose but I got through it. I had to double up on the pain killers. I also had menopause symptoms on top of that aggravated by the BCG.

As for the sore urethra, I can also relate. I had a heck of a job convincing the nurses that BCG also inflames the urethra as well as the bladder. I got to the point where I fought for and finally got some Lidocaine in the urethra before the insertion of the catheter. Nurses seem to be deaf to when patients say that it hurts to have something inserted into an orifice that is meant to let liquid out not have things put in it. They also gave me the argument that women don’t need freezing because our urethras are shorter. I definitely had a WTF moment with that. Now at my cystos I get pretty ballsy and ask, “How many of these have you had?” That usually ends the argument.

Hopefully, this last round of BCG will finish okay. I have to ask though, why did the conversation of having your bladder removed come up based on whether you can handle BCG? Have you had a recurrence? (((((HUGS))))

[Paul D]

Hi Marysue and the reason for bladder removal was brought up by the Uro team in Brisbane because of my ongoing problems with BCG treatment and the fact I don’t have muscle invasive but it is a very close call due to the aggressive nature and size of the removed tumor and CIS. I seem to be having more and more problems not just retaining the stuff for two hours but all the bleeding, fevers etc post treatment. They will reduce the dosage to 2/3rds on the first treatment next year but to late for this weeks last BCG, this week has been the worst I have ever felt and got to the point I was going back to A&E as I was vomiting which strangely I felt much better after.
I did relay my problems to the treatment room nurse (a good one) who put them in my file history, I also have a meeting in Brisbane with the Urology team on the 18th December and for my next Cysto so will hopefully get to keep my bladder. I may need to harden myself up!
Love and Best Wishes
Paul

[marysue]

Hi Paul:

All I can say is that your reaction to BCG must be one for the record books. I thought I had a tough time.

Thanks for your explanation about the possibility of you having to consider having your bladder removed. I hope it won’t come to that but yeah, you do have to consider the situation and have a deep think about what your docs have said. They are the ones with the knowledge and expertise to help us see the situation and weigh the pros and cons of the choices we must make.

If it looks like you are at a significant risk for a recurrence to go muscle invasive and/or your bladder is a mess from inflammation from BCG, not to mention the extreme side effects then I guess that RC surgery might be the way to put an end to things and give you the best chance of a better quality of life and survival.

I am still praying that you won’t have to go that route, but should it come down to that we all will be sending you positive prayers and thoughts. Right now, just try to rest and hopefully your body will heal okay and you will have another chance. Keep in touch and let us know how it goes. (((((HUGS)))))

[Paul D]

Hi Sue and hope you are good, had a chat with my GP today who gave me some useful info on tackling BCG which involved having two weeks of anti biotics prior to the first BCG then taking over the counter Ural UTI powder and taking cranberry juice. I also need to talk more forcefully to my Oncologist and Urology team, this I will do.
Hope the winter isn’t too bad but spoke with my sister in Fort Saskatchewan the other day and she is ready to hibernate.
Love and Best Wishes
Paul

[cheryl9]

Hello Paul

I am an “old pro” at the BCG. 30 treatments and counting. What I have learned along the way:
– relax, breathe deep when catheter is inserted. Reduces pain during and after
– drink plenty of fluids during the six hours after the two hour hold
– stay away from anything caffeinated the day of BCG treatment
– take life easy for a day or two after and the day before BCG (being tired going into treatment is not good)
– don’t tense and concentrate on breathing deep when voiding. It really will reduce the pain.
– stay close to a bathroom on treatment day so you don’t strain trying to hold till you get to a bathroom.

You have a right to ask the nurse doing the BCG how much experience she has doing them. I ran into one that didn’t have experience and neither did I at that point. She did almost everything wrong and I ended up with dead or virtually dead BCG. I almost had a BCG failure during that round of treatments that has always left me wondering if she was the culprit. She did go for retraining once I talked to the department head.

Yes, there are times I didn’t take my own advise and felt very sick after treatment and experienced nausea, pain and blood.

When I have taken my own advice things have gone very well. I have even spent the six hours post-hold picking raspberries. But close to a washroom!

My medical team has told me antibiotics are a no-no before treatment. When I asked the lead time required between end of antibiotics and start of BCG treatment I was told a minimum of 3-4 weeks because antibiotics continue to work after the prescription is done. From what I understand from my team, antibiotics will attack the BCG and the BCG treatment will potentially fail.

Since it is your GP that is suggesting antibiotics, I suggest you talk to your urologist/oncologist who will know more about the BCG world than your GP.

Stress, which I am sure you experience during treatment, is your worst enemy. Will magnify everything for the worse. Check into some stress management techniques to help you.

Take care
Cheryl

[Paul D]

Hi Cheryl and thanks for the useful info on the dreaded BCG! I will see my oncologist in the next couple of weeks to discuss what I can do to lessen the pre/post effects, I can’t say I have too much stress on the day but probably stress more when I see a new nurse working on me as the Cancer Care Clinic have had a few changes in the last couple of years. Will take the GP’s advice on the antibiotics but that question will be raised at the meeting with the oncologist, I do ask questions of the nurse when I am lying helpless and post BCG is always close to the washroom but my one big problem is my cutting down on fluids in general which in Australia can lead to all sorts of problems so that will change. I must admit the last week has been the worst experience since diagnosis two years ago and the best thing I ever did was join this web site so lovely people like yourself can pass on your experience to lesser mortals like me. As for coffee that is one of many things I used to enjoy that is off the menu.I will keep you updated on my progress.
Love and Best Wishes
Paul

[marysue]

Hi Paul:

I concur with all that Cheryl has said. I learned to do a lot of what she wrote about after learning the hard way.

It does make a difference with the nurse though. I had some that were good with the catheter insertion and others not so much. I found asking for extra freezing prior to treatment helped as I must have a nerve near the neck of the bladder. I found that I would feel a real “ding” when the catheter entered the bladder and the extra freezing eliminates that. The only thing was I had difficulty convincing some of the nurses of my need for it. Knowing that the “ding” was coming made me tense up. When I had the freezing I could relax better.

Changes at a clinic aren’t always positive. There have been some changes at the BCG clinic in Calgary and several people have told me about this certain nurse who is not a great person to get a BCG treatment from as they have experienced a lot of pain, post treatment bleeding and infection after dealing with her. I would think someone needs to check on her methods and review protocol with her. I’ve never had to deal with her directly but know who she is and all about her and have decided that I would never let her touch me even with a ten foot pole.

I don’t know how it works in Australia but I agree with you that you need a real sit down with your oncologist and urologist to figure out where it is going to go from here. All the best and please let us know how it goes. (((((HUGS)))))

[FunnyFaye]

Hi to all.  My Name is Faye and l have been dealing with this BC for just over 6 years and the side effects of 15 BCG treatments in all and all of the cystoscopies and 4 turbts have taken their toll.  I have beaten back highly aggressive cancer twice during the past 4 years. My last 3 BCG, endured last spring of 2017, treatments were unbearably painful.  It was like having acid pored into my bladder, and l was forced to demand that they drain me.  It took me 4 months to heal enough be able to wear street clothes or to sit relatively comfortably…just in time for me to have my next cystoscopy in September. I have been living in constant pain since last September when my bladder decided that it is no longer going to heal after that cystoscopy. January of this years cystoscopy was extremely painful, and ever since then, Urinating, BM’s, or passing gas became almost intolerable.  I had a serious discussion with my urologist 3 weeks ago and he laid out my options.  First of all… Pain pills and prednizone and antispasm pills to see if that would work.  The prednizone was not helpful, but the other pills are working.  Then Secondly…last Friday l had a catheter put in place to relieve the pressure which was helping to cause the pain.  This has helped considerably, but, the pain pills and the antispasm pills are still needed to keep me relatively comfortable.  I still cannot tolerate pressure of any kind…such as clothing…or sitting…as my urethra remains sore as boil whenever l apply any kind of pressure. I have been scheduled for March 15th for my next cystoscopy. I am being sedated for this one because of my being in so much pain all of the time.  I’m praying that the sore spots in my bladder can be burned away and that the cancer is still in remission, and that this time l can heal.  The only remaining step after March’s effort to fix the problem, is to have my bladder removed and l’m not a very good candidate for that surgery due to having had a heart attack 16 years ago.   I have begun to feel like a whiner recently because l am so sick and tired of feeling sick and tired.  My urologist told me during our last discussion just over a week ago, when l asked him if what l’m going through is to be expected, that my problems that l’m experiencing are unusual.  Because l cared for 2 late husbands who both died of cancer…at home at their request…l saw and experienced a lot of horrendous things during their final few months of life, and it frightening to recognize some of these things occurring with me.  It also makes me feel as though l might be imagining some of these things to be happening to me due to the fact that l’m familiar with the fact that they can and do occur.  Cancer plays such horrible mind games with us.  Is there anybody out there who has and is experiencing what l am?  Am l normal?  Am l going crazy?  Please talk to me.  My closest friends do their best to support me, but, due to the fact that they simply cannot understand what they hopefully will never experience, l am feeling lost and alone and frightened.

[Jack Moon]

Hi Faye

So sorry you are having so much pain. I had 30 BCG treatments, 3 turbts and have lost count on the number of cystos. I did feel discomfort during my last BCG treatments but a far cry from what you are having to endure. I have never felt any pain from a cysto only exception is when the Uro had to get biopsies and changed to a rigid scope from a flexible one. In your case something is not right and needs to be dealt with so you are not in pain.  I recommend you get a 2nd opinion at a major cancer center. I can assist in making that happen if you wish.

All the best,

Jack

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