BCG Vaccine Dose Reduction

[Monica]

Hello Friends,

I had my third Cysto to remove small tumours. After the first Cysto I tolerated BCG quite well  for the duration.

After the second cysto two  years ago ,I could not do more than two installations with the side effects very strong going into the second day after installation. So my new doctor thought I could try BCG at 1/3 the dose.

I am just wondering if this has worked with anyone else  with less side effects.

 

Thank you

[Edwin Castle]

Good morning Monica.

Like you I tolerated my first (and only ) round of BCG very well. I understand that it is much harder to tolerate  the BCG treatment the second and third time.

This is just my personal opinion, but I believe trying a 1/3 dose as suggested by your Doctor, could be an effective option for you. Personally I would give it a try if I was in your situation.

As far as I know, the amount of BCG installed into your bladder is not calculated to the individual, but is a one size fits all treatment, so a 1/3 dose may work just fine for you. Plus if you find that you still can’t tolerate the strong side affects you can stop again.

Anyway I think it is worth a try. Again just my opinion.

Good luck with your treatment. Ted.

[marysue]

Hi Monica:

I had a total of 21 BCG treatments over 3.5 years.  The first set of 6 was in October/November 2008 following my first TURBT.  My second set of 6 and subsequent 3 sets of 3 were in November 2010 – January 2012 after my second TURBT.  Side effects for me got progressively stronger especially during the sets of 3.  The second set of 3 was the worst.  I had so much fatigue and muscle/joint pain I could barely move.  Pain killers barely dented the pain.  Aleve got it down to a manageable level.  However by the last set even that wasn’t enough.  The clinic nurse was concerned about how much pain killer I was taking and wanted me to talk to my doctor so I did. I was to the point that I told my doctor unless something could be done, I was not going to complete the last set.

Thankfully, he was understanding and listened to my needs.  We tried one treatment at 50% but there was barely any difference so we went down to 25% for the last 3 treatments and I was able to handle it.  At that time, I learned that a study in the US by a Dr. Lamm recommended reducing the dosage for the follow up sets of 3 to be reduced to 30% to avoid toxicity etc.  He felt that dosage was sufficient after full doses of once a week for 6 weeks.  However, in reality, urologists are all over the map when it comes to recommending treatments.  The difficulty is that dealing with this is not a one size fits all situation and it takes the skill of a qualified urologist to figure out what is best for a patient.

When my doctor agreed to reduce the dosage to 25% for the last 3 treatments he was of the opinion that it was better for me to finish the set at a lower dose than not at all.

I too, think this is worth a try for you.  As Ted said, you can always stop again, if things are too much.   The other thing would be to ask if there are any other drugs like gemcitabine or mitomycin C that could be considered as options and potentially have fewer side effects.  That being said, BCG is still considered by the majority of docs to be the so called gold standard for treatment. Best of luck going forward.  ((((HUGS))))

[Monica]

Thanks, Ted  !

First dose was great : Today was the second dose but my last . I cant tolerate it again . So I am not sure of another drug that they can do .

[Monica]

Thank you Mary Sue ! You have done so well to tolerate it with success . I am lying here in bad burning  bladder discomfort . I cant do this again so I will wait to hear from the doctor,to see if there is another plan . He had mentioned a chemo type drug but I have kidney cancer also .
Take care !

[marysue]

Hi Monica:

I’m sorry to learn about the bad bladder burning.  I was fortunate and only experienced a mild version of it.  I have spoken with others that have had similar to your experience and in some cases it results in severe bladder irritation and it was necessary to stop BCG treatments.

Before deciding to bail on BCG entirely, I suggest asking your doctor if there is any pain relief medication that you could take to relieve the bladder burning.  Drink a lot of extra water as well for the next several days.  It will dilute your urine and hopefully reduce the burning.  A warm heating pad may help as well. I don’t know if you know this but many of us find that consuming caffeine while doing BCG is a no-no.  The caffeine seems to aggravate the situation.  So if you are like most of us and enjoy your java, I suggest considering leaving that alone for a bit.  I found that I had to lay off everything so I stuck to water, herbal teas like chamomile or peppermint and some diluted cranberry juice until several days had passed from the last treatment.  Even then, I only went back to green tea.  I do drink some black tea now with some milk and a little honey or sugar but try to keep it to just a mug in the early afternoon after lunch.

Your situation is far more complex than mine was with having the kidney cancer as well. So, if it is decided that BCG is no longer an option then yeah, another plan is necessary and it will take a conversation with your urologist to find out what the other options are. I wish you all the best and hope that it isn’t too long before you feel better.  Please keep us posted as to what happens going forward.  Your story may help someone else.  ((((HUGS)))

[Monica]

Hello Mary Sue ,Love your message ! I didn’t know that  about caffeine and green tea .I-had both before the infusion  ! I am trying to drink lots of water  and s little cranberry juice , while sitting on my heating pad . Yes I asked the doctor about taking tylenol if I needed and he said it likely won’t help. I will definitely follow your advice . I would like to try another kind if drug so will leave it up to him .
I hope you are doing well now.
Thankyou so much !

Virtual hugs.

[Stever]

Monica,

I had some pain after the BCG and after the TURBT. My urologist suggested  Phenazopyridine Hydrocllorine under the label AZO which I was able to get in the US. The urologist said that some drug stores that do make compounds and so on might be able to make it as I don’t think that it is sold in Canada.
You should check with your urologist before using as it.

This drug turned my urine an orange colour but it did get rid of the pain.

 

[Monica]

Thanks Steve. Did you just take it for one day ? I hate to quit the BCG but it was hard and It will likely get worse each time . What drug was your next plan ?

Monica

[Stever]

If I remember correctly, there were 12 pills in the box and I took 2 pills morning and night. Pain was diminished after 2 doses and gone next day but I took for the 3 days. It was mainly after the TURBT that I had pai but it may work for the pain after the BCG.

Can’t hurt to ask your doctor.

BCG didn’t work for me and I had radical cystectomy done 2 1/2 years ago.

[Author]

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