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Altrnate to BCG in US? Is it Immucothel ??
Why is it that my first application of BCG was so painful, like torture, I yelled and screamed out of pain I never experienced in my life before? I am considering discontinuing the treatment because of its inhuman painfulness. Is Immucothel authorized by the FDA in the USA? Why did my Urologist NOT suggest it as an alternative? Martin47 is asking.
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9 Replies
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When I got my BCG they used a LIODOCAINE lubricant.
Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC.
Hello Martin,
I’m so sorry to hear of your extreme pain. It will be 3 years to the day since my diagnosis next Monday Since 2012, I’ve been catheterized over 2 dozen times (not counting surgeries)…Some places use local anesthetics, others don’t and a LOT of how it goes depends on the nurse… They are NOT all equally skilled!! Once you’ve had a bad experience it’s almost impossible to “relax”, but if you can, that seems to help me some. The medications recommended should help with that. Best to you.
Nomad06
Okay here is the list of meds they use for oral surgeries. Valium, Versed, Ativan, and Halcion. So he is giving you Valium so let’s hope that works for you.
Good luck!
Anne
I can’t answer about coverage, but they use a pill when doing oral surgery maybe they can use that. Will try and research the name of that pill.
Dear Ann,
I know the pain is coming from the catheder;
the doctor is doing the procedure himself; he is very experienced he is over 65 years of age,I guess; Now he told me today I should take the following meds two hrs before I arrive: one Percocet and one Valium (I have a driver). I have my doubts this will numb the nerves he must be hitting which hurt so much it makes me yell and scream and tears are forced out of my eyes because of the pain.I will go on Wed. to the doctor for instillation Nr. 2, but I said to the doctor today, I will break off the treatment in the middle of his procedure if it hurts like the last time…Why is he refusing to give me a full anestesisa? He said Tricare and Medicare do not ‘cover’ full anestesia for this procedure, true?
Helpless
Martin47
The pain is not from the BCG but the catheter, and they would need to use a catheter for Immucothel as well. Are they using numbing gel before inserting the catheter? Also I have taken a xanax, and pain pill you might want to ask for something from your doctor. Might want to have another nurse do the procedure, maybe she just didn’t have the experience another nurse might have.
Hallo Ann,
I am new on this Forum; how do I a search on ‘Immucothel’
Martin 47
Immucothel vs. BCG: Thank you AnneH, I spoke to ‘my’ Urologist this morning, because I am supposed to have Nr. 2 instillation on Wed 14th Jan 2015, but because of the enormous pain I am suffering whilst this BCG catheter is being inserted, I asked the Doctor this morning on the phone if he is familiar with Immucothel as an alternative treatment, but he said ‘NO’. I am surprised, what do I tell him next? I read somewhere in this forum that Immucothel is not authorized in the USA by the FDA, but is legal and applied in Europe. Should I travel to Europe? Could get expensive to fly, stay 6-7 weeks in a place, and I don’t know if my insurances Tricare for Life and Medicare will ‘cover’ treatment in let’s say Germany or Switzerland. I think I read in this Forum that Immucothel has a 75% success rate vs. 50/50 success rate with BCG.
Anny comments are welcome.
Martin 47
Hi Martin47,
If you search this forum, there was several discussions on Immucothel from 2008. Not sure why this is not recommended, after reading some of the posts you might find the answer.
Anne
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