BCG

Hi Julie,

Crikey ! What are they giving you BCG ? Sounds horrendous. Are it the side affects the whole time or just right after you've taken it ?

Hopefully it will settle down. And hopefully someone with experience of BCG can answer you.

Hang in there...Del.

This is my 3rd session, the previous have not been as bad as this, painful, but nothing like I’m going through now, last week, the pain lasted until Monday, but was easing from Sunday so it wasn’t as severe on Sunday, I only had the last one yesterday morning and the pain is worse than last week, but hopefully will ease as the weekend progresses, yes it’s BCG, 

thank you Deloo, I’m trying it’s very draining atm 

Julie 

How about you ask your oncology specialist nurse. I assume everyone has one. She/he may be able to give you some advice that may help you through Julie.

Keep posting up here if it helps. Complain, have a grumble, or just post how difficult it is. Someone will respond. Everyone is going through something similar if not exactly the same. And it often helps just to hear words of support.

Del

Hello Julie1812, believe me you're not alone. It is clear that some people are more tolerant of BCG than others. I have had 14 installations of BCG and now they have halted it because it has resulted in chemical cystitis. My last treatment was end of September and since mid October I have suffered with bladder spasms and pain. The last cystoscopy just before Christmas showed an inflamed bladder. Since then I have had 8 weekly installations of Ialuril which in theory helps to replace the damaged bladder lining. It has helped a tad as the spasms are less frequent but I still get some pain mostly every morning. Just be careful of your diet, I don't drink alcohol and as much as I like it spicy food has become a no no.

Keep us updated with your treatment and progress, it does help to share it, there are plenty of us out there.

Thank you, for this information, it’s not nice that people are going through this but it’s nice to know your not alone, I sailed through the first sessions then 7.8, 9 gradually got worse and then 10.11,12 even worse again, I’m having bad pain in my bladder and my tummy is really swollen, think I may need to see my GP x

thanks again, I hope you can continue with treatment soon, have you got a plan for treatment? 

julie 

Didn't have BCG myself, but am aware that some people suffer very badly from side effects. I didn't want to risk that with a 50% likelihood of still needing RC at the end anyway! Just shows that BCG is not a treatment to be undertaken lightly, perhaps the medics don't really make people aware of that? 

Anyway, hope you feel better soon & that it will be effective for you in dealing with BC.

Thank you Deloo, I’m going to make an appointment with my GP, it could be similar to what Jacaranda is going through.

hope your treatment is going well

julie 

I think Teasswill hits it on the head by highlighting the fact that BCG does have its downsides which in my case wasn't fully explained. Having said that I would have still gone ahead with it. So far it has kept the cancer away, at the moment there are no plans to pursue it, just having 3 monthly cystoscopy's to monitor the situation. I think you must reach a saturation point as far as BCG goes and I'm at mine. It does have an affect on quality of life, have to think twice about going out and it also disrupts my sleep. It's like the bladder has a mind of its own and you're never quite sure when the pain might strike or you suddenly require the loo. Do stay in touch on this forum.

Hi Julie,I hope the gp can help and that you feel better soon.Love Jane