Becoming Routine

We've had some wild and woolly weather since my last post.  True to New England fashion, nothing transpired as predicted.  Luckily the larger storms produced more rain than snow, but there were a few storms we got hit with about 8 inches of heavy wet snow.  Hey this is January, and it's almost over.  The clocks will be changing again in early March.  I've already noticed sunsets getting a tad later.

Since my last post, I've been calling/messaging/emailing various providers to ensure all the stars are aligned for various upcoming procedures.  My next being in early February.  I'm going in for a removal of  my capsule in my left eye.  Since I had my cataract surgery, vision has become cloudy in that eye.  It was discussed after the surgery that condensation might cause that, so it's not a surprise and should be quick.  I've already received some eye drop meds for post-op.  

I received a call scheduling my colonoscopy.  Still waiting for more information (prep instructions) for the March 23rd procedure.  This will be close to home (Haverhill Holy Family Hospital).  

I'm scheduled for my annual AAA repair check-up in Worcester on March 20th.  Because an earlier CT-Scan showed an enlarged aorta above the heart, the doctor wants to have a new scan done.  I received a call and they want me to have blood work done to clear me for the contrast.  Working on getting that scheduled so it's a few weeks before the procedure.  In addition, Dr Mossanen wants me to have a urogram prior to my next appointment with him.  Still trying to get that paperwork finalized.  [Still find it hard to fathom in this day and age that a fax machine is the preferred method of communicating medical information.]

Dose 3- Round 2

Not sure exactly, but this week's BCG appointment was moved to today (Thursday).  I'm thinking the bad weather had something to do with supply chain issues, but being retired (and not having a different doctor's appointment) the change was pretty easy to make. 

I arrived, checked in, provided my sample, waited my turn and visited yet another examination room.  The Physician's Assistant, Michael administered the BCG today.  Of all those that administered, he's the best.  And I told him so.

Just finished my two hour marination and waiting for any side effects to kick in.  Feeling chilly (but not the chills), mostly tired.  We'll see how the day progresses.  The sun is out, but it's breezy.  Another change in the weather.  Yup, New England.

Just received email notification/confirmation of my last two BCG appointments, bringing me up to February 22.  Let's hope the weather cooperates. 

Post Script:  I did have some bleeding but it wasn't too much and cleared up quickly.

More to come!

I Know The Drill

Today I had my second BCG treatment for this round (two).  After having the appointment time change a few times, I arrived 10 minutes prior to my appointment and checked in.  The front desk was really understaffed today, but I was patient.

After my Covid screening, I was given a specimen jar and asked to provide a sample.  Although I haven't visually seen any blood, I was concerned that I might be disqualified if they did find some.  So I completed my task and returned to the waiting room.

About 10 minutes later, my name was called.  I was grilled on my identification information while following the medical professional to yet another examination room. After being asked if I was allergic to latex, iodine and any medication and answering negative.  I was told, "You've been here before so you probably know the drill." Yes, I know the drill.

Torri, the Nurse Practitioner arrived.  She was quite personable and bubbly.  We chatted about the weather while she arranged 'things'.  She did the procedure relatively painless and said, "You are done.  We'll see you next week."

I got home and managed to marinate for the full two hours then emptied my bladder.  I knew that my energy level would decrease as the day went on so I went to the recycling center, dropped off some outgoing mail and picked up a few thing at the store.

I made something to eat and started feeling kind of blah.  As predicted, my energy levels dropped and I was having frequent visits to produce a few drops, but feeling like I had much more.  Normal.

So I'm keeping a low profile tonight and just taking it easy.  I hope that things return to 'normal' tomorrow, although I have an early chiropractor appointment.  It is what it is.

More to come!

So Far...and Far Away

Since My Last Post 

I had a call from Anna, the scheduler for Northeast Urological.  Since I missed my first treatment of BCG, she said she would provide a new schedule for my upcoming treatments so I get my round of six.  Basically she said she would tack them on to the end of my current schedule.  She did say she would follow-up with confirmation via email and snail mail.  I also mentioned that I had a conflict on the 11th and was not able to make the treatment.  Once again she said she'd tack it on the end.  Cool.

Later that day I received two email confirmations; one appointment tacked on the end, but another for Monday the 9th.  I had recalled that they only do BCG treatments on Wednesdays so I was semi-skeptical on the Monday appointment.  So I was prepared to have this week's treatment on the Monday versus the Wednesday.

Monday came and I arrived at the office a bit before my appointment time.  Upon check in, I had mentioned that I was there for my BCG treatment.  The attendant looked puzzled as she looked at my 'chart'.  Then she said, "They just want a urine sample today."  I wasn't going to have an argument, but did mention that I generally provide samples the day of (with a few exceptions).  So I took my collection cup and completed my task.  On the way home, I realized that I left the specimen at the sink instead of placing it the depository cabinet.  I hope someone sees it and puts it where it's supposed to be.  (Someone did.  I received notice from the lab that the sample was 'routine', meaning no blood or infection).

Later that day, I received the snail mail confirmation.  I had to laugh.  In the envelope was two appointment cards.  Of course the one for this day was clearly marked 'urine drop off  from 8AM to 3PM.  The email had no mention of that.  Now I have to chase down another replacement appointment. [By the way, Mercury is in retrograde currently]. 

Consultation with Dr Mossanen

After a consultation with Dr Mehta, his office scheduled an appointment with Dr Matthew Mossanen.  He is affiliated with Mass General/Brigham and Women's.  He has a number of offices, but according to Dr Mehta, procedures are administered in Boston (for joy).  

My first consultation appointment was for 10AM in Foxborough.  Given the time of day and the work commute, I gave myself two hours to get there.  In preparation I looked up the address and reviewed the directions so I have it in my head what to expect.  Of course traffic was typical and there were the slowdowns at various intersections of major routes, but generally moved along.  

My GPS took me 495S to 3S to 128/95S to Route 1 (to Gillette).  As the crow flies, pretty direct, but that part of the world has spotty internet/phone signal.  The closer I got, the less I knew where I was heading.  It was almost 10 and I wasn't there yet and GPS had me turn onto a street that was very residential looking.  Par for the course, GPS decided to change the destination from 20 Patriot Place to 20 Patriot Circle (cul de sac with expensive homes, but no offices - or stadium).  I knew I was lost so I called the office, got in the automated phone maze and finally got someone who transferred me to an automated system for directions...in Spanish.  

I retraced my path to get back to route 1 hoping to see a human where I could ask for directions to Gillette.  All pavement and roads, but not one human could be found or seen.  So I drove on Route 1 looking for any signs to Gillette.  In the distance I could see the stadium, but no clear path to get there.  It was now 10:20AM.  I was seriously contemplating turning around and going home, but by chance I found a turn that bought me into the massive parking lot.  I meandered around and caught a glimpse of a sign that said "Health Center".  Of course there were signs everywhere indicating that you can't park here.  Finally I found a lot where it said parking for guests of Patriot Place.  I pulled in.

I noticed a slight incline and many restaurants, bars, stores, etc.  Then, hallelujah, Brigham and Women's sign.  I found the entrance, made the path to pick up a mask and sanitize my hands.  Found the information desk and was directed to the Urology Department.

Arrived to a small waiting room (not a soul waiting).  I walked up to the attendant and said, "Sorry I'm late, but I got lost.  I have an appointment at 10, but I know it's 10:30."

She asked my name, looked at the computer and said that she would check to see if they will still see me.  YES!  She told me to have a seat.  I didn't wait long before a nurse called my name and had me follow her to the vital sign station.  I had my weight recorded, blood pressure, pulse, temperature and answered some questions.  I was then asked to follow her to an examination room where Dr Mossanen would be seeing me.

I was happy to have finally arrived but a bit anxious. It wasn't long until Dr Mossanen arrived.  A young guy, very personable and engaging.

I had provided information from the questionnaires I completed online and we discussed my medical odyssey beginning from my breast cancer, multiple surgeries, AAA repair and finally my relationship with bladder cancer.  Not having my daily allotment of coffee and having had a commute from hell, it was tough bringing up the dates/time frame/and various doctors involved in this medical chapter.  But we were able to build a good time-line to help him understand my journey.

After having 4 TURBT's and one failed round of BCG, I had mentioned that I just started another round of BCG treatments.  He agreed and supported my current plan, but he did discuss some options, if BCG doesn't work.

He provided a web site: BCAN.ORG (Bladder Cancer Advocacy Network).  Quite informative.  I will be checking out the contents and I also sign up for their newsletter.  Dr Mossanen also talked about possible treatments which are chemotherapy, but unlike the chemo I had intravenously, this is administered like BCG.  He gave me two drugs to read about: Gemcitabine and Docetaxile.  Both are used to treat various cancers.  Of course I gravitate to the side effects.  So far I've been reading potential side effects when administered through the veins.  A few things I've read about being inducted into the bladder had some side effects listed, but not as scary as those caused by intravenous. 

Basically, if it came to this, I would be getting this in the Jamaica Plain location.  I'd marinate, void and be on my way.  Not happy about the location, but I'll worry about that later.  There are always unwanted side effects, I might lose my hair again...but this time for good.  And, other potential side effects that really are unpleasant.  More reading/research is in order.

So Dr. Mossanen was in agreement with my current plan.  He will obtain pathology reports, requested that I have a CT Urogram and have a tele-health visit in the Spring (after my BCG and next cystoscopy/TURBT is done.  [At this point, I was thinking that today's visit could have been done via telehealth...grrr]

So I have more reading to do.  More calls/correspondence regarding when and where I'd need the CT Urogram.  Once again, the more you know, the more you don't know.

More to come!

Some Semblance Of Order...Possibly?

Housekeeping

Since my last post I managed to catch some 'crap' going around.  I tested negative for Covid (twice), but this really threw me for a loop.  I began to feel poorly on New Year's Eve (day) and it went down hill from there.  The headache, the chills, the aches, the runny nose, the loss of appetite and general feeling of sh*t came on strong and lasted for a few days.  So I had yet another crappy holiday (minus Christmas with good friends).  

While being benched, I was fortunate that so many were willing to provide anything I needed to return to good health.  Other than myriad remedies and home grown brews, a friend dropped off some homemade chicken soup (very hearty) and fresh baked goodies.  There is something to said about the chicken soup cure. Each day now is better than the previous, but I do have a lingering post nasal drip and sporadic coughing spells.  Yes, this too will pass. 

I was able to reschedule my January 11th appointment to Monday, January 9th.  In addition, I have a new appointment tacked onto my BCG schedule that will bring me out to February 8th.  I logged on to my patient portal and completed all the questionnaires required for my appointment/consult with Dr Mossanen in Foxborough, next Wednesday.

Another Journey

After last week's false start, it was recommended that I provide a urine sample on Tuesday (which I did). Once again it was to be tested for the presence of blood in the urine.  Since the BCG vaccine cannot be introduced to the blood stream, it's imperative that I am not bleeding.  I heard nothing from the office so I felt pretty confident going in today.

I arrived and after check in and a re-scan of my medical coverage cards, I was told I had a credit so no co-pay.  (I'll take that.)  I was asked to provide yet another sample, which I gladly provided.  After which, I waited to be called.

My name was called and the nurse walked up to me and asked if I was feeling OK.  I know I had my temp taken and aced my covid SAT, but did say that I had a cold last week.  She said, we found some blood in my sample.  [CRAP! again].  She said he was going to talk to the doctor for guidance. Not long after a different person called my name.  I expected them to say it's not happening today, but she said,"Follow me."

Walking to the examination room I was tested on my DOB, name and address [Aced it again].  Prior to entering the examination room, the Nurse Practitioner, Kristine said, "I'll be right with you."

I was instructed to drop trow and sit on the table covering the uglies with picnic table sized napkin. Kristine came in and I inquired why I was getting the BCG when there was blood present in the urine.  She said, "It was microscopic.  You have bladder cancer. That would be the normal result, so the BCG induction was cleared to proceed."  I was ambivalent, but was eager to get this show on the road.

As usual, the procedure is quick, but very unpleasant.  Some administer it so much better than others.  But I was on my way.  At this time I didn't have my rescheduled date so I indicated that I might not be back for 2 weeks. [But I'll be back Monday].

I went home to marinate and I made the two hour mark. I'm attributing this to my having only one cup of coffee.  I'll have to remember that next time.

More to come!

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!