Recurrence after high grade non- muscle invasive cancer

[Tana]

Ha- that’s cute Joe- no April’s Fool. Congratulations on your clear scope.Thats great you got the Pfizer. Also kudos on your new grandson and hopefully you get to hold him soon. All the best; Tana

Also thanks for the link to the pharmacies for vaccines. I was just on it when your email came in.

[Xandra]

Congratulations on your vaccination Joe!  And on your clear cysto.  Wonderful news.

I have my vaccination tomorrow and my TURBT on April 13th. Things are finally moving forward.

I hold my newest granddaughter as much as possible. She eases the pain which is amazing.  I think that it’s the body’s release of oxytocin.   We were helping with childcare throughout the pandemic so our toddler grandson didn’t go to daycare.  Our family bubble is full of children which is a bonus.

Happy spring everyone.

 

 

Xandra

[Joe]

Thanks, Tana and Xandra.

Dr. Shane Cotty,  a well-known immunologist/virologist who has been involved with studies on the COVID-19 virus and vaccination, said that experiencing a few days of soreness on the arm and some other effects are good things as it indicates that our immune system is responding to the vaccine and producing antibodies so we don’t get infected and T-cells to kill virus-infected lung cells in case some virus escape antibodies.   So, enjoy the soreness.

best

[Joe]

Hi Xandra,

I think tomorrow is your appointment with Dr. Black.   I am not sure if he will check your bladder with Bluelight cystoscopy during TURBT.   If he does, you will be administered some chemical -hexaminolevulinate  (the trade name is Cysview) into your bladder an hour and voided before the TURBT.  The chemical highlights tumors in pink when blue light is turned on.  This helps the urologist not to miss tumors, especially CIS.   Because the instillation of Cysview is done before you go to OR for resection, please let me know how the whole thing is done if possible.  I only read about it and it is not offered in Fraser Health, so I am curious to know how it is done.   One time, I called the University of California in San Francisco and asked how much it would cost to have blue light cystoscopy done for a Canadian without insurance.  They quoted me $50,000 as it is done in OR under general anesthesia.  So, I did not go.    Now, Kark Stroz came up with flexible Bluelight cystoscopy with Cysview, so it can be done outside of OR.

Anyway, we wish you the best with the appointment with Dr. Black tomorrow.

Joe

 

 

[Xandra]

Surgery is tomorrow. So glad to finally get these tumours out!

I will be having Cisview, an infusion of hexaminolevulinate.  Which I have had the past two TURBT ‘s. With the use of blue light during surgery it can  illuminate any tiny cancer in the bladder before it can be detected in a normal cystoscopy.  It’s an added reassurance that every bit of cancer is removed.  The procedure is similar to BCG. One hour before surgery a catheter is inserted into the bladder and infusion is deposited. The exciting bit I miss due to general anaesthesia. But I do find out after surgery if any other cancer was seen.

Tempted to ask if I can have a spinal block, if they would let me watch the surgery on a monitor.

 

Xandra

[Joe]

That will be cool if we can watch the monitor during TURBT, though I would probably have the urologist focus on removing the tumours properly.   I am also not a fan of a spinal block.  For the first TURBT,  I had a spinal block due to my chronic lung issue.  I could see and hear everything in the OR.  The worst part was that I felt my legs twitched during his craping the tumour and heard the urologist complaining to the anesthesiologist that he could not do the surgery because of the twitch. Luckily, I guess the twitch stopped and the surgery continued.   So, from then on, though I had chosen general anesthesia though I was aware of some risk with general anesthesia to me.

It is a good deal that you had Bluelight cystoscopies at VGH.  A couple of years ago, I called the head office of Photocure – the manufacture of Cysview and found out that they charge about US$1,000 for one instillment of Cysview.   In addition to the cost of Cysview, it requires upgraded hardware, which I was told the initial cost would exceed over $100,000.  So, it will be high hurdle for Canadian healthcare system to implement bluelight cystoscopy.   In this regard, Urologists, including Dr. Black, who are associated with McGill, University ot Toront, UBC published the feasibility study of cost effectiveness of bluelight cystoscopy.  Their conclusion was  “TURBT using BLC with HAL for patients with NMIBC is associated with a five-year cost of approximately $1-5 million for jurisdictions of 4-13 million people. Although this translates to a cost of $1200-1400 per patient for their initial TURBT, BLC with HAL improves patients care, reduces recurrences, and decreases the need for hospital beds after TURBT. If this diagnostic procedure eventually improves progression rates, there would be considerably improved cost-effectiveness. ”

Contemporary cost-consequence analysis of blue light cystoscopy with hexaminolevulinate in non-muscle-invasive bladder cancer.

https://pubmed.ncbi.nlm.nih.gov/28652875/

 

 

 

 

 

[Xandra]

The pathology results from my TURBT  high grade non-invasive.  I was called by the Medical Fellow, not Dr.Black.  I was told that I would be put on two chemo drugs infused weekly for 6 weeks then monthly for a year. With the first diagnosis I was given a 3 year timetable. This time just a year. Perhaps recurrence expected by then?

I asked whether I could continue with BCG seeing that it is considered the best course of treatment but told no because I have failed the treatment, or rather my cancer has.

I wondered whether my RA drugs blunted my immunological response for the first two of three treatments.  But it seems no one has study this.  People on immune suppressing medications. I stopped the RA drugs after I noticed that I was not getting my usual reaction and got the full BCG reaction I had known to expect. It was the first time that I had been on my RA drugs since my diagnosis in March 2019.

I have put in a request to speak with Dr. Black before my treatment starts May 20th. Hopefully I will hear from him before.

Xandra

[Joe]

Hi Xandra,

Glad to know that the tumours did not progress to the muscle tissue even the TURBT was delayed for a long time.  By the way, was it TaHG or T1HG?

I believe the treatment you will be receiving is Gemcitabine + Docetaxel sequential.  The study was first done by the University of Iowa back around 2015 for those patients who did not respond to BCG, BCG relapsing, BCG intolerance, and BCG were not available due to the shortage.    I have noticed that urology cancer research center affiliated hospitals have started offering the treatment in the US.     I do not know the exact protocol VGH uses but the University of Iowa used the protocol described below.

“After catheter placement and complete bladder drainage, 1 g of gemcitabine in 50 ml of sterile water was instilled. The catheter was plugged, and gemcitabine was retained for 90 minutes. Following bladder drainage, 37.5 mg of docetaxel dissolved in 50 mL of saline was instilled via the catheter, which was then removed. Patients were instructed to not urinate for 120 minutes after catheter removal. This induction regimen was administered weekly for 6 weeks.”

In May 2020, the result of the study involving multiple hospitals was published on Gemcitabine + Docetaxel sequential treatment for only those who had recurrence after BCG treatment. The result says ” Overall 276 patients (median age 73 years, median followup 22.9 months) received treatment. Nine patients were unable to tolerate a full induction course.  One and 2-year recurrence-free survival rates were 60% and 46%, and high grade recurrence-free survival rates were 65% and 52%, respectively”.     The link to the study is listed below.   The efficacy is pretty good when it is compared to two FDA approved drug for BCG non-responsive NMIBC

It is noted that the University of Arizona team further improved efficacy by thermal (heated) Gemcitabine + Docetaxel sequential treatment, but because the process takes longer and more complicated,  I do not see other hospitals are offering the thermal Gemcitabibine + Docetaxel sequential treatment.   It is something you can ask Dr. Black which protocol you are receiving.

Joe

https://pubmed.ncbi.nlm.nih.gov/31821066/

 

 

[Tana]

Hi Xandra;

Thanks for the news- glad you got the tumours out and that they are non- invasive and Glad you have a treatment plan even though it’s not the BCG. It’s so unpredictable, cancer, to how it reacts to treatment. I hope this one will stop it in it’s tracks. I don’t know what RA drug is. All I know is I don’t know all the variables and I hope for the all clear for all of us.

All the best for your treatment and for no side effects!

I get my treatment in June for three weeks  once a week of BCG.

Good you got your vaccine and you get to see your grandkids. They are such joy for the soul.

Tana

[Author]

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