Houston, We Have A Problem!

Since my last post a few things have transpired.  

I did provide blood samples for my genetic cancer screening panel.  I received a follow-up call yesterday (12/28) indicating that the results were back.  According to the results, I had no mutations that would indicate a proclivity to cancer or the cancers within my hereditary tree.  Interesting.  However, there was one gene that had an uncertain result.  According to the caller, this gene is unknown at this time so the uncertain result will be treated as 'negative' until more science/data is available.  As a reference:

WHAT ARE THE POSSIBLE RESULTS OF GENETIC TESTING?

1. Positive Result (pathogenic or likely pathogenic variant): An alteration is found that is
harmful to the gene. You were born with an increased chance of developing certain
types of cancer in your lifetime, with specific risks based on the particular gene
involved.

2. Negative Result: No harmful alteration is found

a. Uninformative negative result: No alteration is found in you and an alteration has
NOT previously been found in another family member. You may still have an
inherited risk to develop cancer because of an alteration that was not detected in
the gene(s) being tested, OR in another gene not analyzed in this test. However,
most cancer is not due to inherited risk. Cancer screening recommendations can
be made based on your personal and family history.
b. True negative result: No alteration is found in you, but an alteration was found in
another family member. If you do not have the alteration that is in your family,
then you likely do not have the same increased cancer risks as family members
who do.

3. Uncertain Result (variant of uncertain/unknown significance or VUS): A difference was found in a gene, but its meaning is unknown. This inconclusive result may or may not be associated with increased cancer risk. Most VUS results are just normal differences in genes and are not associated with an increased risk of cancer. The lab will continue to evaluate this finding, and we will try to keep you updated about the meaning of this result.

So there's that.

Schedules

I did receive my schedule for my next round of BCG treatments, however, I do have a conflict on January 11th.  I have an appointment with Dr Mossanen in Foxborough at 10AM.  I have an appointment at Northeast Urological for BCG at 10:30.  Prior to Christmas, I had called the scheduler to see if I could be moved to Thursday or a late appointment on Wednesday.  I hadn't heard back, but I did talk to the Physician's Assistant today and he said that I could skip a dose if necessary.  They will just tack on the missed dose on at the end.

 Failure to lift off

Well today was to be my first round of BCG.  Last week I provided a urine sample and the test results were normal.  I provided a fresh sample today and Michael (the PA) indicated that there was blood present.  Although it couldn't visibly be seen, the indication was enough to cancel today's induction of the BCG vaccine.  Bummer. I have to wait until, next week now.

More to come!

 

Options, Questions and More Information Needed

I've been in the process of getting information needed for my genetic cancer screening panel.  After a few tele-health sessions, blood samples were needed for the next step.  Since this is being directed by Dana Farber, I had a blood draw today prior to my consultation with Dr. Mehta on my next steps to treating my bladder cancer.

Forgetting the time change and getting darker earlier, I wasn't lucky while headed West to Methuen.  Because of the setting sun and my direction, I was caught in traffic due to the solar slow-down.  Normally a 15 minute ride turned into a half hour.  I arrived five minutes before my appointment and was asked to show my Covid screening pass.  I did do my e-check in, but wasn't asked to complete the questionnaire.  Of course all the other visits to this facility, no one ever asked to see it or the QR code.  Well today they asked and I didn't have it.  Already running late, I was asked to complete the survey/questionnaire.  It didn't take long, but just another annoyance.  I did pass go, but forfeited the $200.  

I arrived at the 3rd floor and checked in.  I received my bracelet and pager type device that they called a locator.  I was given the mandatory SATs, but no writing implement.  I asked and got a miniature golf-like pencil.  I sat down and completed the paperwork, made the same changes as I did the last time.  (Why don't they update?).  I was called in for the blood draw.

My vitals were checked, I was weighed then followed the nurse to the blood draw station.  She was really good.  Very little pain and struck the mother-load on the first try. I told her she should be an instructor.  She seemed to take the compliment with a smile.  After-which, I was brought to an examination room and told to wait for Dr. Mehta. 

It wasn't too long and Dr Mehta arrived.  We talked and discussed what had happened since my last BCG treatment, TURBT and some of the discussion he had with Dr Previte. He asked if Dr Previte discussed options for me (at this point).  I mentioned 3: 1, another round of BCG (also mentioned the interferon that is no longer offered); 2, going elsewhere; 3, having my bladder removed.  I told him that I chose to begin another BCG treatment but get information about other options (immunotherapy).

Dr Mehta said the he agreed that having the bladder removed was a life changing option (although the safest), and stood by my decision to hold off on that.  He went on to say there are two other options.  The first is an immunotherapy (only administered in Boston [he mentioned Brighams]) and the other inter-venous immunotherapy adminsitered at DFCI (Methuen).

The first option I would need to discuss with the urology team in Boston.  He said that it's chemo-like, but it's administered via catheter.  He was unsure of the frequency and possible side effects.  But he said he would send a referral to them and they would reach out to me for consultation.  The second option he referred to a "hail Mary" is administered like chemo.  There are side effects which 'could be' inflamation anywhere from top to bottom: brain; thyroid, lungs, intestines, endocrine system.  He said that 10% of the patients have this and if it's bad then steroids are administered. He said this, in his opinion, would be the last effort prior to bladder removal.

He did say that I do have some basic requirements for immunotherapy: aggressive cancer; stage one, but I would have to have tumors.  According to his conversation with Dr Previte, the tumors were scraped away.  But he said to have the consult with the team to get more information.

So the game plan (at this time) is:

• Continue to the next round of BCG
• Meet with urology team in Boston
• At the end of the treatment (BCG) have a cystocopy.  (Depending on what Boston team says, either remove the tumors or not- if there)
• Follow-up with Dr Mehta in March

I asked if he and Dr Previte update each other.  Dr Mehta said, "We talk a few times a week."   On the way out, I asked what to do with my SATs, Dr Mehta said, "I''ll take them".  But I get the feeling they go into the shredder.

So I await contact from the Boston team and also from Dr Previte on the schedule for the next round of BCG. 

The more you know, the more you don't know. 

Post Script: I received an email that I was referred to a specialist from the Partner's/Brigham Network.  I have the appointment booked for January 11, 2023 with Dr. Matthew Mossanen in Foxborough.  I hope the weather cooperates.

More to come!

December Already

Since my last post, I had endured 6 days of torture with the catheter.  Because surgery (my second TURBT) was performed on Tuesday I would have had the catheter for two days, but the doctor's office was closed for Thanksgiving (Thursday and Friday), so I'd have to wait until Monday to have the catheter removed.  I was tethered to my 'ball and chain' and was on self imposed house confinement.  I just waited out my sentence and meandered from bed to couch trying to get into a comfortable position.  This was nearly impossible, but I soldiered on.  

I ate various 'finds' from my freezer, some dated back to 2019, but it didn't kill me.  My thanksgiving consisted of my own recipe for chicken wings and rice.  Wasn't the regular turkey dinner, but it was good and hit the spot. When Monday came and the catheter was removed, it was such a joy.  A shower, trip to the grocery store, daily walk and lots of cooking (to replenish my freezer food).  Just doing the simple things felt so good.

Good News/Bad News

I had my follow-up with Dr Previte today.  I hardly slept last night worrying about what he would say.  Given the large number of tumors he found and removed, I was fearful that he would say that the cancer had invaded the muscles.

When I met with Dr Previte, after pleasantries, he sat down looking like business and the first thing he said as he shuffled through my file was:

"I have good news and bad news.  The good news is the biopsies indicate that the cancer is still non-invasive muscular (stage one - T1/Ta).  I found one big tumor that was the cause of your bleeding and removed it.  I found 6 other tumors scattered in the bladder and removed those.  I found no cancer in the diverticulum.  The bad news is you are a BCG failure.  

At this point you have three options: 1, do another round of BCG with interferon; 2, seek a different treatment (drug names were mentioned but I didn't get them), however we don't have those.  You'd probably have to go to Lahey.  Or 3, remove the bladder. 

What would I do? I'm 75 so the safest is to remove the bladder.  You are 70.  Once again the safest is to remove the bladder because this cancer can kill you."

I was relieved to hear that the cancer is still stage one.  But was interested in the options.  As we were talking he was looking through things and quickly consulted one of his colleagues about the BCG with interferon.  Apparently, they don't do interferon with BCG treatments since the data didn't support its effectiveness. So the first option was modified to be just another round of BCG (which I I failed first time around). Of course I am still averse to bladder removal until all options are exhausted or if it is no longer stage one. 

We then started talking about the alternative option of immuno-therapy cancer treatment. I had mentioned that Dr Mehta (my oncologist) had discussed an FDA approved treatment for bladder cancer and asked that I reach out to him if the BCG wasn't effective.  Dr Previte immediately called Dr Mehta and had a consult with him.  Although I could only catch a few things in the conversation, Dr Previte said that Dana Farber (Dr Mehta's office) will be in contact with me.

In the interim, we will be scheduling another round of BCG that will start in about a month and will last for 6 weeks with a follow-up cystoscopy/biopsy.  He did ask me to be proactive and call Dr Mehta's office to get that ball rolling.

So at this point, I'm back to square one.  I got home and called Dana Farber and waited for a call back.  By happenstance, I received a newsletter from Dana Farber discussing new treatments for bladder cancer.  A sign?

From the news letter:

Immunotherapy for cancer is a form of treatment that uses the body’s immune system to combat the disease. Today, immunotherapy is being applied to a wide range of cancers, often in combination with other agents, and clinical trials are exploring ways of improving and expanding its effectiveness.

A particularly promising form of immunotherapy, known as immune checkpoint inhibition, uses antibodies to block proteins on cancer cells, such as CTLA4, PD-L1, PD-1, and LAG-3, that impede an immune system attack on the cells. The antibody therapies allow such an attack to proceed.

Immunotherapy has been approved for the treatment of the following cancers:

• Bladder cancer
• Breast cancer
• Cervical cancer
• Colorectal cancer (subset)
• Esophageal cancer
• Head and neck cancer
• Kidney cancer
• Liver cancer
• Lung cancer
• Lymphoma (Hodgkin’s)
• Melanoma
• Merkel cell carcinoma
• Squamous cell carcinoma of the skin

Not all patients with these cancers are eligible for immunotherapy. A variety of factors — the genetic makeup of the tumor cells, how far the cancer has advanced, and whether it has responded to previous treatments, for example — determines if and when it may be used as part of standard treatment.

Bladder cancer

Patients with early-stage, moderate- to high-grade (fairly fast-growing) tumors often receive a vaccine consisting of a weakened, live bacterium called bacillus Calmette-Guérin (BCG). The vaccine reduces the risk of bladder cancer recurrence by sparking an immune attack on the bacteria as well as nearby cancer cells. Several immune checkpoint inhibitors have been approved for patients with advanced bladder cancer including:

•  atezolizumab
•  avelumab
•  durvalumab
•  nivolumab
•  pembrolizumab.

So, my understanding is there are checkpoint inhibitors available.

In The Works

I did receive a call back from Dana Farber.  They will be initiating my consult with Dr Mehta to discuss my options.  They have requested test results, file notes, etc. from Dr Previte's office.  Seeing that Dr Previte already had a discussion with Dr Mehta I don't anticipate any problems.

So, at this point I have a few weeks healing then will start another round of BCG, unless Dr Mehta's options are more viable.

Post Script: Received another call back from Dana Farber (Dr Mehta's office).  I now have a consult scheduled for next Thursday.

 

More to come!