Here we go again…. TURB #4 but now with a twist.

[lefmike]

I guess this is an update of sorts.

I had a telephone meeting  with my Urologist,  he explained that the tiny tumor has to come out ASAP and has scheduled me for TURBT #4  next Thursday.  Because of the COVID-19 situation, they will be doing the procedure using  an epidural instead of putting me asleep, I’m assuming that’s due to the respirator situation these days.     We discussed what happens after the procedure,  he said he’s pretty certain it’s cancer  and  said I’ll be having 6 more BCG treatments following that  and a scope 3 weeks after that.  He said he’s concerned because the way this thing came back so fast after my last TURBT in late November saying it appears to be very aggressive   and he said that this could go right from Stage 1  to 4   THAT is very scary.   So He did say to be prepared that if this does not work I have to look at having a radical.   He talked about including in the BCG some Interferon  to try to boost the immune system.  Anyway  I was expecting him to tell me there was no rush,  none of this is easy.

I would like to know if anyone else has had Interferon?  Does it react differently than the BCG treatments…   I thought you could have a number of TURBTS before we go this route…  Yes getting ahead of myself.  Anyway  that’s the story..

 

Good luck and take care everyone.

 

 

Mike

 

 

[GerryW]

Hi, Mike
I have not personally had experience with BCG or Interferon, but maybe another member of this forum can get back to you after the weekend. Here is one summary text from 2015 that I found when looking up information on Interferon for my own interest…

“Thirty to forty percent of patients with high grade nonmuscle invasive bladder cancer (NMIBC) fail to respond to intravesical therapy with bacillus Calmette-Guerin (BCG). Interferon-α2B plus BCG has been shown to be effective in a subset of patients with NMIBC BCG refractory disease. Oct 13, 2015”

There is a lot of information like this out there, but it may not reflect the latest results of this treatment since technology is rapidly advancing. I found my urologist was a great source of answers to my questions and support during by journey with bladder cancer. He and our community of patients and caregivers can be a great source of support for you.

Kingston and the 1000 Islands

[Jack Moon]

Hi Mike

I have a bladder cancer buddy from the US that has had BCG/Interferon treatments after getting recurrences with just the BCG treatments.  He had initially 6 BCG treatments but had a recurrence. His Doc then added interferon to the BCG on his next 6 weekly treatments and his follow up cysto was all clear. He then had 4 sets of 3 weekly BCG/Interferon maintenance treatments over 2 years. He has been all clear since, and will be celebrating 10 years all clear this year.

He had very few side effects during his 6 BCG treatments. But the side effects especially fatigue kicked in during the BCG/Interferon treatments, especially during the maintenance treatments.

Hope this helps,

Jack

.

 

[lefmike]

As always there’s this incredible positive information coming from you all, Thank you.

I have read previously, that interferon has been known to help,  I’m just very surprised of the fact my doc’s suggestion that if this does not work I will have to explore/consider an RC.  I was under the impression that you do this if you do TURBTS  removals and find the tumor has progressed to stage 2  but not if it’s still stage 1.  He did say that based on my age 64, he wants to be aggressive with this to ensure it doesn’t progress to a 3 or 4.  He did say if I was in my 80’s or older he might suggest just going to BCG if the tumor was to come back after this latest treatment.  I’m still confused and a little anxious… Hey if it comes to having the cancer gone but with the bladder gone, I’m still alive and quality of life is still there. only different…  Anyway, I know I’m getting ahead of myself maybe the BCG will do its magic and I have similar results as many of you have had.  Thanks for the ear..

 

Mike

 

 

[Tana]

Hi Mike;

I am sorry to hear of your situation and that is aggressive. I pray all goes well for your Turbt and treatment and that it does the trick. You are so positive! I missed out on my scope in April so I have no idea what’s happening in me until the hospital says ok to use the camera but that I did talk to my urologist ( by phone) and he’s hoping they will ok the three month BCG on schedule for June 1st and has booked a tentative date to get me in for a scope in June also.

All the best for you Mike;

Tana

[lefmike]

Hi everyone.  Just a quick update,  I had TURBT number 4  last Thursday.  The hospital was so quiet, eerie in a way  with just how quiet it was.  Everywhere you went everyone had masks on.  It appears the procedure went well,  all I know is that I had it, nothing else, the doctor was nowhere to be seen when I woke in recovery so I won’t know anything more until next Thursday when we get his telephone call with the pathology report.  I went home with a catheter and had to keep it in until Monday,  my private nurse ( my lovely wife) removed as we didn’t want anyone  unnecessarily in our house.  At least it’s behind me ( well in front)  but you get the idea…. 🙂     So until I hear back  I’ll be worried and concerned like previous but knowing that I’ve gone through 9 BCG’s and survived so I will this too…..

Best to you all, it’s been a long time in the house but hey what else is there to do under the circumstances right?

 

Stay safe and stay healthy..

 

Mike

 

[lefmike]

Update:

Spoke to my Urologist today, the tumor they removed this time was Ta   so less than the one they initially took out last year.  I’m to start from scratch with 6 BCG  treatments starting in two weeks, this time with interferon as the additive.  Here’s hoping this time it works.   I did have one “Official” clean scope  so hoping this is my one recurrence of it.  Does using interferon improve the results by much?  Does anyone have any data on that?

 

Thanks  and good luck and health to everyone here..

 

Mike

 

 

[Michael Wright]

Just completed turbt no. 21 last Weds since being diagnosed in Dec.2015 for low grade BC.

BCG and mitomycin did not work.

Dr. says its like cutting grass each time and will only do a bladder removal as a last resort.

 

[lefmike]

Holy cow Michael Wright, 21 TURBTs  that’s incredible.  Yes mowing grass but that’s a lot of procedures, I found this last TURBT has made my bladder even more sensitive, I woke from the anesthetic and had severe bladder cramping and pain that they used morphine to control,  yesterday, 15 days w following this latest procedure  I passed the largest clot I’ve ever seen, it was the size of a vitamin or Naproxen pill  and the bleeding  for the next 18 hours was very scary, better now but still having cramps.  I wonder how a clot that size could be there still,  anyway hoping this is the  last of this issue and I can move on the BGC treatments.

Good Health to everyone

 

Mike

[study3101]

Wow, hope you all are feeling better. I had my second TURB just before Christmas last year. Followed up by 6 BCG treatments starting in February through the middle of March.  The pain after surgery was bad this time as there was a lot of scraping to do, but he got it all. Yeah! However, starting the day after my first BCG treatment I had so much pain that my family doctor put me on Pyridium. I continued right through the treatments. Luckily, my cysto was on April 27 and we took a look and my bladder was very red inside so I was put on a strong antibiotic, again, to try and get that dealt with. It seemed to work. After that I was still in pain, but external pain. I am female so the doctor was very concerned. My family doctor is conducting appointments virtually and he and I had a long conversation and he put me on Lyrica and prescribed a cream for the location. He called me on Saturday to see how I was doing and I was able to tell him that the Lyrica is working and the pain has gone. Long story. Here’s the question, it appears that I have some sort of nerve damage due to the BCG treatments. Anyone else? I am trying to research this, can anyone help?

[Tana]

Hi Mike ;

Glad to hear they got the tumour out and it’s a lesser grade. Thank god for morphine to help with pain. Hope you are feeling better now. Are you scheduled for when you get the next set of BCG? Did you find out about the interferon? I sure hope it helps you!

I got my scope done. My urologist says he’s very happy that it showed no signs and to do the next set of BCG which I’ve been scheduled for June 12;19 and 26. I am also scheduled for a CT scan in July to check the nodules in my lung they saw on a previous scan which they said didn’t appear to be a metastasis but need to make sure  and of course another scope in 3 months. So is the schedule.

The hospital is eerily quiet. There’s staff at the front door to check why you are going in. I have a mask 😷 my daughter-in-law made.

Sorry to hear of the nerve damage Study3102- I haven’t heard about that. But am glad the pain is gone for you.

And to Michael Wright- hoping for success for you so you don’t have any more Turbts- good lord-

Hang in there all. We will overcome!

Much love to you all;

Cheers; Tana

 

[lefmike]

Hi Tana  So glad to hear your scope was clean, but I’m sorry about the nodules in your lung situation, that is not something we want for sure… I will remember you in my prayers.   I can’t wait to hear those words from my doc.  ALL CLEAR ! ! !   I haven’t had a full clean scope yet  maybe this one will be the start.  I started the BCG/Interferon treatment last Tuesday,  the cramping was pretty intense at times for 18 hours after  with a slight fever  but then the next morning I felt a lot better.  Yesterday I had my 2nd treatment,  I actually asked to Doc if I’m getting the 1/3rd version of BCG  because the effects didn’t seem to be as bad as my previous instillation’s with BCG alone.   He said nope  full dose of BCG  and the little vial of Interferon…   Let me tell you after yesterday’s instillation I wouldn’t be asking that question again, for the first 8 hours  I might at well have  sat on the throne, the pressure and feeling of having to go was so intense,  it finally settled down 8 hours later but flu like and and cramping continued until this morning  and still now  but much less than yesterday.  But as Mr. Moon mentioned earlier,  people feel tired after the interferon treatment  that was my main complaint last week,  I just had no energy.

Good luck on your next BCG treatment Tana  hoping the best for you.

 

Mike

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