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!

Here We Go Again

Before starting my BCG treatments, Dr Previte told me that after the first round, I would have a cystoscopy and a biopsy to see how the treatment was doing.  If the biopsy indicated bladder cancer (again), I may have to do another round of treatments.

Today I graced the halls of Holy Family in Methuen for my day procedure.  At an ungodly hour, my alarm went off so I could be ready for a ride to the hospital.  Of course I was fasting so no coffee was allowed and I was only allowed to have just enough water to choke down the pills I was allowed to take.  It was dark and cold, plus my brain was in a fog due to the early hour and lack of caffeine. 

Cheryl King and Phil Leavitt arrived right on time to give me a ride.  I apologized for their having to get up so early to cart me to Methuen.  Both were very kind and said they were happy to assist.  I expressed my deep appreciation for their kindness.

I was surprised how much traffic there was for the time of day, but we made good time and got to the hospital a few minutes earlier than my scheduled check in time.  Prior to their leaving we had a game plan in place and if things worked out, they would come back and provide my ride home, we figured mid-day.  I thanked them again and proceeded to check in.

Covid protocols during regular hours, required one to be screened and tagged prior to proceeding. But given the early hour, there was one person on duty, but there was sign that said I had to enter at the ED.  I was was stymied. Couldn't determine was ED was or where it was.  Luckily, the one person on duty saw me and met me in the lobby.  I pointed to the sign with a quizzical look.  "Where is ED," I said.  She responded with, "I told them that sign wasn't helpful especially to the Spanish speakers. ED is the emergency department." I agreed.  She took the sign down and let me in.  After asking a few questions and taking a fresh face mask, she directed me to Day Surgery on the 2nd floor.

I arrived on the second floor and it was basically dark and closed up.  I tried a few doors, but they were locked.  I waited a few minutes and someone let me in.  There was no one at the check in, but there was a patient sitting in the corner who said, "She'll be right back."

A few minutes later, an attendant asked for my name then left.  Shortly after the other patient's name was called and she was being serviced at check it.  I was then called.  I signed off on some required forms, my ID was reviewed, my Covid card was copied, then I was told to have a seat.  Not too long after, a nurse, Paula arrived and called my name.  Verifying my DOB and full name and my reason for being there she walked me to an all too familiar Day Surgery Prep and Recovery room. I was told to undress and don the hospital gown and gripping stockings.  She went over the order of appearances and a thumb nail sketch of what will be happening, all while thumbing through my prepared book and signing off on certain tasks/forms.  Once in my new uniform, I was weighed and had a few tubes attached to me at various locations.  Just as discussed, I had a visit for the Ghost of Christmas Past.....no...wrong story...the anesthesiologist and his team, the lead nurse, then finally Dr Previte.  Each had their spiel and corresponding check/sign off sheet.  Many had the same questions, but I was consistent in my answers despite the lack of caffeine. Dr Previte reviewed the expected game plan and discussed possible scenarios (best case/worst case).  But it seemed there would be no overnight stay.  (YAY).

I received my stint in my hand.  Uncomfortable, yes. The whole team waited for the word then my entourage wheeled me into the operating room.  Much like a pit stop crew, each had their own task to perform, all at the same time.  I heard one person say, the doctor is on his way. Breath deep, you'll feel like you are drifting away.  I was out.

I woke up about 2 hours later.  Mostly uncomfortable, but not really in any pain.  The nurse said that everything went well and the doctor will be by to talk.  She gave me apple juice and crackers and adjusted the bed.  By this time I figured out that I had a catheter, which I was expecting.  She indicated that the urine was clear (no blood).  She also said that I was going to have it removed tomorrow.  [Encouraging].

Doctor Previte arrived and said, "There was more to do than I anticipated.  I found and removed 5 tumors." [I didn't think that was a good sign, since 5 tumors were removed before my treatment.  It was my thinking and hope that there would be none or some, but not 5].  He showed me pictures, but I had no reference at what I was looking at.  It looked like spin art to me. He went on to say that I wasn't going to stay over night, but he wanted to keep the catheter in for a few days.  But, Thanksgiving is Thursday and the office is closed Friday. So I'd have to wait until Monday.  OMG 6 days with this torture device!  He said he called in two prescriptions for me. [Given the number of tumors and relatively short period of time since the last surgery, my concern is: has it invaded the muscles?  Won't know until the pathology report.]

Eventually I was allowed to dress and have my ride pick me up.  Of course my prescriptions are delayed because the pharmacy need more info form the doctor and at this writing, the doctor's office is closed for lunch.  So I'll be chasing that down.  In the interim, I'm quite uncomfortable with the constant tugging and it's too late to have coffee (for me).

Post Script: Got my scripts. One is an antibiotic; other makes my pee orange.   Got an email confirmation of my next appointment.  Catheter will be taken out 11/28/22 at 9:40AM.  I'm counting the days and minutes.  Slept for 9 hours, albeit interrupted.  Once I find a position that's comfortable, everything is tolerable.  But anything else is quite uncomfortable. So basically meandering from chairs to bed with visits to toilet to empty my freshly made warm orange Julius. Might try playing piano today or not ;-)

More to come!

Semi-Annual with Dr. Song

Busy week this week with doctor appoints and hospital related pre-op registration, blood tests, urine tests, genetic cancer screening (tele-health) and so many SATs.

It was time to see Dr Song at Mass Eye And Ear, Waltham.  Not a fan of early morning appointments, but it was a reschedule so I had to take what was available.  So, I joined the ranks of morning commuters on the highways today.  I do not miss the commute.  People are so aggressive and have no driving manners.  But I gave myseld an hour and I arrived with some time to spare.

I checked in, sat and waited to be called.  At about 10:00 (the appointment was at 9:30), I heard someone call Richard.  The guy next to me stood up.  Wow, two Richards next to one another.  Luckily, I had the correct birth date, but he wasn't happy.  I guess he was there before me and his body language spoke volumes.

Generally I see a number of medical professionals who administer various tests.  The first one took just a few minutes and I was told to go back to the waiting room.  About 5 mins. later, I hear "Richard".  This time he spoke up and said which one?  Lucky me, I had the winning birth date.  Once again, he was visually pouting.  I was given an eye test and finally some dilating drops and was sent back to the waiting room.  By this time the other Richard was snoring.  I chuckled to myself.  As my eyes began to be affected by the bright lights he was finally called in.  I guess he wasn't happy to be disturbed at this point so he walked heavily to his exam room. [Wonder how his driving habits are?]

I was finally called into see Dr Song at 11:30.  The doctor said everything looked good.  The eye pressure was 17 in both eyes.  I take daily drops to reduce the pressure in my right eye.  So the pressure was reduced form a reading of 33 previously.  Good news.  But..... the capsule on my left eye was beginning to get cloudy.  I was told of the possibility of this happening prior to my last laser surgery and lens implant.  According to the doctor, the same thing happened on my other eye and I had the follow-up surgery to correct.  [I honestly don't recall that.  So it was so minor or it didn't happen.  I'll have to review my postings.  But it doesn't matter at this point.]

I'm scheduled for a YAG capsulotomy left eye on February 6th, 2023 at Surgisite, in Waltham. I have a post op follow up on 2/17/23 8AM (yuck)

More to come!

Next Procedure In The Works

Since my last post, I did have some moderate bleeding that started Halloween night around 9PM and seemed to 'almost stop' by midnight.  The following day I did have some 'color' but it cleared up. All seemed fine until November 10th when I was shocked to see blood again.  It was moderate but gradually cleared up after a few days.  Very disconcerting, even though I was told that I may have bleeding.  But, I was prepared for bleeding near the time of my BGC treatments.  My last one was October 12th, so a month later to have bleeding seemed to me odd.

Today, I had an appointment to provide a urine sample to ensure that I wasn't still bleeding or had another UTI.  In the past I had a call back the same day and was prescribed an antibiotic.  Still no word, so I'm taking it as a good sign.

At this writing, I'm scheduled to appear at Holy Family in Methuen on 11/22.  I've arranged a ride but I won't know the time of arrival until the day before.  I'm assuming it will be very early as previous procedures.  Given my recent bleeding I'm optimistic for good or expected results, but mentally prepared if the doctor needs to remove new tumors.  I just hope that the cancer hasn't spread to the muscles or I will need to stay over night and be forced to wear the 'bag' for 5 days.  So close to Thanksgiving, Murphy's Law will be in full affect I'm sure.

It is what it is.  More to come!

Round Six - Graduation?

Arrived at my expected time for my last BCG treatment.  By this time things are pretty routine at check in.  Still ace my quizzes and have an acceptable body temp to proceed to my providing a urine sample.  Oh ya, still getting dinged for $50 co-pay.

It wasn't as busy today, but I had to wait about 20 minutes before my name was called.  Like other times I was instructed to follow the medical professional to an exam room.  I saw the nurse practitioner, Alex today.  He poked his head in the examination room as I was being quizzed.  He seemed to be caught up with the back-log (or maybe he wanted lunch). At any rate, he said, "Today is your graduation day!  You know the drill, lower your pants and sit on the 'diaper'." He left, but not before saying, "I'll be right back."

The medical professional was still there readying things.  I jokingly asked if I get a diploma or a certificate of completion.  She thought is was a good idea and chuckled as she left.

Alex returned and said that I was once again receiving the full dose.  [Ok I said to myself]

By this time, I can say that the most unpleasant part of this in-office procedure is the insertion of the catheter.  Even though numbing gel is used it's pretty cringe-worthy.  I find myself making a tight fist until the uncomfortable feeling passes.  Once the catheter is in, I can sense that I'm going.  A weird sensation since I've always had the power to go and stop on my own.  The feeling of going 'on it's own' is kind of disconcerting.  I mentioned to Alex that I had to squeeze out enough for my urine sample.  But he said, "There's more in there." I felt drained and he showed me the urinal and sure enough there was a good amount.  He then said, "OK, it's going in.(BCG)"   I didn't (and haven't) felt anything for this part.  He then proclaimed, "I'm removing the catheter." Ah, Done!

I'm scheduled to see Dr Previte next Monday for a follow-up to this 'induction' round, then have a biopsy/cystoscopy scheduled for November 22nd.   

I got home and did the full two hours of marinade.  So far I'm doing alright.  Feeling kind of blah and having to go frequently with little output.  No blood...yet.  

Post Script: I had bleeding but it was relatively light and only lasted that evening and cleared up the next day.

More to come!

Round Five

Well round four of the BCG did yield some bleeding.  However, not nearly as bad as the previous.  Other than feeling chilly and a bit foggy, it wasn't too bad.

Round Five

I was originally scheduled to see Alex on Wednesday for round five, but I received a call late last week requesting that I come in on Tuesday.  Sure, why not?

My appointment was at 10:30 so traffic was moving along.  Got to the office with time to spare.  It was quite busy.  I checked in and got dinged again for $50.00.  Collected my specimen container, filled it and sat in waiting room waiting to be called.

It wasn't long and my name was called.  I was quizzed again.  They couldn't stump me.  I aced the test again.  I was brought way back to an examination room, and instructed to 'assume the position with pants down'.  The Nurse Practitioner, Torry administered the BCG today.  

After some grilling and check in with previous symptoms, she told me that I would be receiving a full dose today.  I didn't know that I had less than full doses previously. Apparently within each six rounds, one round will be full strength.  That was today.  I asked if I should be aware of worsening symptoms.  Torry said, " You'll probably feel the same way as other treatments, but maybe a bit more lethargic and a longer period of feeling blah'. It is what it is.

She was quick administering the BCG and said, "We'll see you next week."

I got home at 11 and began marinating. Unfortunately I didn't make the two hour goal.  While I was marinating, I received a call from Dana Farber.  My oncologist, Dr Mehta had initiated a genetic testing panel for me.  So the call was gathering family medical history (regarding cancer).  It helped the time pass.  I spoke with two people.  First took history, second pre-registered me for a tele-health call in Novermber.  More on this in later blog updates.

So at this point, I'm feeling chilly and foggy brained and kind of blah.  We'll see when, and if, the bleeding starts and how long it will take place.

 [Post Script: Bleed has started. Heavier than last time.  Hopeful it will clear up tomorrow.]

More to come!