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BCG, Mitomycin or nothing?

4 years 11 months ago #45628 by sara.anne
In the US, BCG is usually the treatment of choice. However,a few individuals are too sensitive to BCG and then Mitomycin is often used. The feeling here is that BCG is somewhat better as the first line treatment. Other countries have difference practices.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 11 months ago #45624 by yellowroseli
I was told BCG is best for agressive BC . I am wondering about Mitomycin for agressive. Anyone here have Mitomycin for agressive BC that has not gone into the muscles. Was your treatment successful.

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4 years 11 months ago - 4 years 11 months ago #45623 by Nicke
Hi,
I got my eighth and final dose Mitomycin for now last week. The side effects became worse and worse every week, but was bearable. I have had burning pain over the hips back and up toward the kidneys besides discomfort from the bladder. I'm going in for cystoscopy January 16 and if everything looks good, I will get a dose of Mytomycin every month for the next two years. Cystoscopy every three months. I am crossing my fingers this time.

Yes Knut, there are very few Scandinavians discussing bladder cancer at the internet. Both at Scandinavian web site's but also on english speaking web site's- One reason for that could be the high average age of bladder cancer patients. I Think the average age is the same in Sweden as i Norway.

My guess is that the treatment guidelines for bladder cancer in Norway is very simular to the Swedish. Do you know if Mitomycin or BCG is used as first choice for treatment of intermedial risk superfinial BC with high recurrency. (TaG1-2)? I know that it is not your area. I am sorry to hear that you had lost your bladder, but since it was 8,5 years ago you can be quit sure that you have won over the BC once for all.

I live near Sundsvall and I am having my treatment there.

Niklas

Niklas

12-12 Diagnosis
13-1 Turb TAG1
13-5 Turb Ta low grade, multiple
13-10 Turb TaG2, multiple
13-11 Mitomycin 8 weeks + 6 month
15-01 Turb

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5 years 1 month ago #45491 by Knut
Hi Nicke.

I live in your neighbourcountry Norway and had my bladder removed some nine and a half years ago.

What we have common is that we both have been treated at Scandinavian hospitals.
And I remember there were several people that had superficial bladder cancer. One guy had been to the hospital for BC every Third month for 14 years. So he was kind of fed up with.

I was also 48 at the time when I was first diagnozed. (The average age is 67)

I have been a member of this community for several years but it's the first time I see another scandinavian in here.


I hope everthing works out well for you.

I live in Oslo and had my treatment there.

And I end this message with a swedish phrase:

Hej då, så lenge!

Sincerely,
Knut

Diagnozed first time April 1th 2004.
Muscle invasive, T3A.
Radical Cystectomy June 29th 2004.
Illeal conduit. Bag on my stommack.
The following user(s) said Thank You: Nicke

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5 years 1 month ago #45486 by mareewifeofgreg
hello again,
well the air sounds an interesting idea!! This week we went to see another specialist who seemed like he had an interest in IC. He looked at ALL Gregs history & results of 3 cytos/biopsies & stated he had cystitis cystica, cystitis glandularis & follicular cystitis, 2 of these can become cancer & 1 of which appears to have done so. He also scanned his bladder to see how much he emptied, had a look at his prostate & said he had prostatitis as well! O my goodness - what else is there to come? Why was this never picked up & Greg always said he thought the symptoms were related to his prostate. Is it possible it was prostatitis all along & with all the focus & prodding etc on his bladder the cause of cystitis & the result we have now? I guess one will never know eh? So is now on antibiotic to hopefully get rid of that.
So its a wee wait till he sees specialist again in Dec & then everything will close up over the Christmas & New Year period so who knows when they can start any treatment? In teh meantime, he is going hard out on vege juicing, highdose Vit C, alkalizing, less sugar, meat etc. & keeping his stress levels down!
Good helpful reading here - thanks to all.

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5 years 1 month ago #45485 by sara.anne
I very often felt "air" after a BCG infusion, and it was no "big deal." The discomfort may have been just from the procedure itself. BUT anytime you have ANY questions like this, you ask the doctor as soon as you can!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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