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Very Sore Eyes after 6 week BCG plus aches/pains

12 years 8 months ago #3623 by joanie
Rosemary and Cherii also you husband. I know how you feel I have spent 4 years on BCG and Interferon I have had the same problens with my joints some days I could not open my fingers. My knees were both bad I did try having some kind of shots that did not work for me I ended up having a knee replacment on my left knee as I twisted it so bad dont know how much BCG had to do with this had the replacment after two years of BCG. I chose to continue with the treatments as I wanted to save my bladder that will now be removed in March.
The doctors offered me the treatment for TB in case the BCG had caused lesions I refused its a 6 month treatment and makes you very sick and they did not even know for sure if I needed it. The BCG gave me very bad backaches my heating pad and I have become best friends.
Rosemary I did not have too many problems with the yeast infection except when I was in hospital and the antibiotics were given through my IV.
Hope you both feel well soon
fallon

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12 years 8 months ago #3611 by Rosemary
Wendy,

Thank you so much for your sympathy. It helps. As for myself, I am in a quandary as to what to do.
It seems that my reactions are an aberration and not a rule, so I don't have any guideposts as to which way to go.

If I had known about the yeast, I could have maintained some probiotics during treatment. I think it would have helped to maintain the delicate balance of good/bad microbes and maybe I wouldn't be over run with yeast now. The Dr's medicine did NOTHING to help except to take some money out of my pocket. ( I'm wondering if Ceri's husband is the same cause with his mouth ulcers.)

As for the inflammation in my body, I don't even have a word for it. Is it arthralgia? I know it's not arthritis, because it isn't in the bone. It's funny cause it migrates and is now in the 2nd toe of my right foot. It's like having the gout. I have to hobble to walk.

I don't know whether to continue treatments. The doctors want me to.

thanks for giving me the chance to vent.

Ceri, I hope your husband is better and let him know he is not alone.

Getting on with my hobbling day,
Rosemary



Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 8 months ago #3609 by wendy
Ceri and Rosemary-

Don't you think some kind of antibiotics against BCG infection might be in order? I'm not sure, but I think it should be addressed...

It sounds awful and my heart goes out to both Rosemary and Ceri's poor husband...it sounds like two cases where the treatment is worse than the disease (in fact most cancer treatments feel that way...when I told the pain management team those very words after my own cancer treatments she said "That's what everyone says").

Wendy

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12 years 8 months ago #3586 by Rosemary
Ceri,

Thanks for checking back in.  It sounds like his symptoms are much more bearable and I can tell by your tone, that he is back on track.  I guess you don't know yet if he will continue BCG's?  I don't know if mouth ulcers could be yeast (?) or maybe thrush.  This is something I'm not familiar with in regards to BCG, but I wouldn't think it to be unlikely.  I have a very awful systemic yeast problem as a result of treatments.

Dubai?  I'm envious.
Rosemary


Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 8 months ago #3584 by The_Rabbit
Hi Rosemary

Just an update of Steve's symptoms. It appears he never had conjunctivits! After 12 days of awful eye problems we ended up at the Eye Hospital on Sunday for 4 hours and he was diagnosed as having extremely DRY eyes which had caused the closing of his lids and swelling. He has to put artificial tears in his eyes 8 times a day and we are going back to Eye doc on Friday. Also, he has developed horrendous mouth ulcers. He has never had them before. He has been prescribed Corlan pellets - a mild steroid for those. He has a very dry mouth and nasal passages. We are going to see Consultant Urologist on Thursday so perhaps he will be able to fill us in more. I mean, are these symptoms just a side effect of BCG or a BCG infection or some induced chronic 'syndrome'. He still has very sore knee joints but they are helped with NSAIDs. The irony is, his peeing/bladder, are causing no problems at all.

We have booked to go on holiday to Dubai next week, so we are hoping we can go, he is looking forward to it and hope that a week in the sun may help. Not sure about dry eyes though - that desert heat! But, hey, we've got to live our lives haven't we?!

Regards

Ceri

GP aware of haematura in Jan 06
Diagnosed BC Nov 06
T1G3 with CIS
Age 46, Smoked since 15, gave up at diagnosis

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12 years 8 months ago #3470 by Rosemary
Ceri,

Oh my goodness gracious.  This sounds pretty classic with the arthritis showing up in the knees like that.

I'm hoping that the consultant will call you back PDQ.  I know that it would be very hard to function without the Ibruppofen.  

Give him our best and let him know he is not alone!!!  I know how bad that pain can be.  

Please keep us posted as to how he is making out.  My thoughts are with him, but I just don't know the answer with treating this syndrome.  I remember reading that there are steroids (???) or some specific drug that alleviate the symptoms.  But, I believe that there is a question about drugs interfering with tumor suppression.

Best regards,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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