Reaction to BCG instillation

Hi Ang62 . Sorry to hear you are suffering adverse effects of BCG treatment. Not had this myself so not much help, but we do see similar on here from time to time. I am sure others with  experience will be along to help. In the meantime it is important you drink plenty of water to keep things flushed out. Best wishes.

Thanks Rily. 

I've never drunk so much water ️

Best wishes to you, and everyone. 

Angie

I have been taking -

1) Curcumin capsules extra strong. Just one a day. There is some evidence that it helps BCG be more effective although that was when BCG was combined with curcumin and given into the bladder. 

2) Two cups of Acerola and Juniper berry tea.

3) Two capsules of renal cytoprotective capsules available on Amazon. It is all herbal. 

4) Two litres of Lemon-Barley water with added electrolytes and vitamins. 

So far, it has helped. My side effects are usually for no more than 6 hours but during that time, it is terrible. Lot of fever, dizziness, tiredness along with haematuria [slight], pain on passing urine sometimes with loin pain and feeling of razor blades in the pipe. Often it feels like a red hot poker. Those six hours are Russian Torture. Paracetamol helps. It all ends suddenly with a bout of sweating. 

Fortunately, next Wednesday is my 6th dose and then there will be respite. 

I hope you settle down and you can complete the course. Best of luck. 

Gosh, what you've been going through sounds horrendous.  

I don't have a fever, and passing urine simply feels mildly uncomfortable.  I'm more concerned about the persistent haematuria, which seems never ending.

Hi Ang62.

Although my experience is not medical advise and i would always advise to seek medical advise if you are unsure, i regularly have blood in my urine after BCG. Im now on around 23 doses and due to my age they want to give me the maximum allowable; 3 years in 2 to go.

Being only 36, i have horrific side effects from BCG which seem to get worse each session. Blood is a regular occurrence. When i first started bleeding, i asked advise from my GP and they advised a few possible reasone:

1: The catheter can scape your lining

2: Due to your bladder constantly tensing and pushing following BCG, somehow you can force it too much and it can cause bleeding.

3: BCG itself can cause shrinkage to the bladder and is a powerful bacteria which can thin the lining.

Luckily, i took the advise and im still here.

Depending on your age and how you react to BCG, you can have numerous side effect but you just have to keep smiling, keep positive and remember that its only temporary and is for your own benefit.

Personally, i was fine till around dose 3 where i started to get severe pains for hours on end, large amounts of blood, sweats and chills and felt like my body was eating me inside and this continues for weeks on end; around 3 months i had the flue. They assumed i had an infection, tested and nothing. They have now come to a verdict that my reactions are so severe due to my young age and having a strong immune system which is fighting.

Last week i had one of three doses for this bi annual treatment and wow.... the reaction was awful. Severe pains for two days to the point i could hardly move, profusely sweating and vomiting. 

To be honest, i had nicer side effects from chemotherapy when i underwent that 4 years ago for another cancer.

I got the best information reading medical journals from America where they seemed to have so much more data for BCG patients, this calmed my nerves as at first, i was just told it must be something else but found my side effects to be well known in America and they actually mix the BCG with morphine to reduce these effects.

One positive if you have much longer on the treatment is IBRX has just had approval across Europe and the Middle East for their new drug which is to be run with BCG. This drug reduces side effects, reduces amount required taking it down to 1 treatment a month and not weekly and the results to date have been a huge decrease in reoccurrence and the reduction of tumours.

Ever need any first hand experiences, always here to help.