Challenges of the 3rd Rodeo but past experience and really nice nurses help

[marysue]

Hi Everyone:

Just an update – after my 3rd TURBT, the Epirubicin wash post op, the Group B Strep infection and all the challenges that came with that, I embarked on my induction set of 6 BCG in late November.  As some of you may have read I posted about the differences between the Verity BCG that I’m currently receiving and the OncoTice that I had years ago during rounds 1 and 2 with bladder cancer in 2008 and 2010.

The main difference for me this time around is a much greater amount of bladder inflammation which could have happened as a post op consequence due to the massive inflammation already caused by the Epirubicin.  With the OncoTice that I had before it caused more in the line of severe flu symptoms of headache, chills and unbelievable muscle/joint pain.

I completed 5 out of 6 treatments but decided to bail on the 6th due to the amount of bladder inflammation I was experiencing.  With #5 by the time I got home from the hospital 2 hours later, I was doubled over in pain. It took tons of water, peppermint tea and a fair amount of pain killer to get the worst of the pain to subside.  I know from previous experience that some bladder irritation can be expected but not this level of bladder pain. The bladder irritation/pain should subside in 48-72 hours tops but this was incredible. I did not want to burn my bladder to a crisp and end up with long term cystitis.  I’m on hiatus until my cysto on March 16th.  This will give my bladder time to heal and also let my body, mind and spirit reset for the next set. Assuming that all is clear and I get the green light from my uro, my first set of maintenance will start the following week.  Thankfully the clinic nurses and my urologist  were supportive of my decision.  It wasn’t an easy decision to make but I trusted my gut and now feel much better.  I’m finally off pain killers and can sleep without a hot water bottle pressed against my belly.

The plan is that I will try the next BCG treatment at a half dose and if that is still too much they will cut the dosage down to one quarter.  I have 9 maintenance treatments to do and plan to do as many of them as my body will tolerate.  I hope that I will get at least another 12 years clear or even better in that that the 3rd time is the charm and the BC is gone for good.

I think the message that I’m trying to say in this post is trust your gut and don’t suffer in silence.  If you are worried or concerned about something with what is happening with your treatments, post op issues etc. speak to your medical team.  That being said don’t make any major medical decisions without consulting your medical team and weighing the pros and cons first.  I have been most fortunate in that I have a urologist who listens to his patients and the clinic nurses do the same.  As one nurse said to me, “You are the patient experiencing this and only you can tell for sure if things are too much and not going well for you.”  This was a definite change from earlier years when it was basically implied to me that I was not capable of giving input into my care and that I should obey all instructions from the doctor and staff with no questions asked.  If you don’t get a satisfactory answer the first time, keep persisting or consider getting a second opinion.  ((((HUGS)))) Best Wishes and best of luck to all dealing with “stuff”.

 

 

[Nightingale]

Hi MarySue,

Thank you so much for sharing your journey this time around.  I can’t even begin to imagine what the pain in the bladder must feel like.  I just pray and keep my fingers crossed that I never have to go through what you’ve been going through.

Your advice is excellent, about consulting with your medical team to determine steps you (and them) can take to make your situation more bearable.  I am certain that the folks reading your post will confident in initiating that conversation with their medical team.  I know I would after reading your story.

Keep well my friend and I sure hope your treatment in March will be way more pleasant!

My best,

[Joe]

Hi Marysue,

You and your medical team to reduce the dosage to reduce the side effects is in line with what Dr. Lerner, who is one of main investigator of SWOG-1602 clinical trial which is testing if Tokyo-172 strain BCG is not inferior to Tice BCG,  Dr. Lerner said reducing 1/2,1/3, 1/10 and even 1/100 induced sufficient immune responses, recommending reducing dosage as a strategy to reduce side effects and enable continuing BCG treatment rather than terminating BCG treatment because of the side effects.   I am aware of one patient who was being treated with Tokyo-172 strain BCG had side effects problem toward the end of 3 years maintenance protocol.  He then went on to be treated with 1/10 dose.    It is good to see that your medical team is accommodating your request.  I hope every patient can establish such relationship with his or her medical team.  Thank you for showing us such example.  best Joe

[marysue]

Hi Guys:
I think after a while when you have done more than one round of BCG you get really familiar with how it affects your body and you can measure that against what are the “normal” side effects that staff tell you to expect. As mentioned I truly believe that some of my bladder pain is the result of doing BCG on top of the Epirubicin post op which inflamed my bladder to the nth degree and took weeks to settle down. I suspect that my bladder is now really sensitive to drugs and I will have to be careful from now on. That being said, as we all know everyone reacts differently to medications. I do have a sensitive body and feel side effects of medications on a regular basis.

When I was a child and had to have regular IVP x-rays post op from my urology surgeries that I had to correct birth defects, I always felt sick after the contrast medium was given to me. However, back then no one believed me when I told them I had a really bad head ache and was nauseous. I was considered a “bad patient” because I complained. My mother was the “suffer in silence” type because she had been raised to believe that doctors were basically gods and not to be questioned and got upset with me when I complained to her and was mortified when I “dared” to say anything to my doctor. These experiences taught me that this was wrong and that as a patient I have the right to have input into my treatment plan and the right to refuse if I feel that it is not a right choice for me. These experiences have also taught me to ask about the pros and cons of having a treatment, surgery or testing or what would be the potential consequences if I don’t follow through with their recommendations.

I am thankful that there has been a dramatic shift in attitude of the hospital staff in that they no longer act like your body belongs to them and the hospital. (((HUGS)))

[Author]

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