Opdivo Day

Every 4 weeks like clockwork, I return to UT Medical at 7:30 am to receive a 30 minute Opdivo Infusion to fight and/or control my Melanoma that had migrated from my foot to my groin to my neck where, when removed there, it was DEAD, so my radiation/opdivo treatment had worked...  Protocol for this disease/cancer now states that I will be receiving monthly infusions of this drug until my body decides it no longer likes receiving the toxic liquid.

While the actual infusion only lasts 30 minutes, one of the blood tests that must be conducted prior to my receiving the infusion, takes an hour, so I am usually there from 7:30 am until 9:30 am maybe 10 am depending upon how long I have to wait in between each set of circumstances.

Today, it is 9:30/10:00 am because I do not see the Oncologist but when I see the Oncologist that typically adds another hour to my time at the hospital.  However, I am always on the way back home before NOON...  so, I have my afternoons on these days completely free.

It is widely believed that my Melanoma tumors that invaded my body, came from some of the "wicked" chemo treatments that I had received for my non-Hodgkin's Lymphoma when I had lived in Kentucky for a year and was seeing a new Oncologist...  who happened to believe that a more aggressive treatment against Lymphoma was appropriate based upon the literature that he had read.

I have no way of knowing if this Oncologist was right or wrong in his thinking...  all I know is about a couple years later, a Melanoma tumor was found on the bottom of my left foot that we originally thought was a wart and had it removed twice until the third time when the doctor decided to send it off for a investigation.

Normal Again: Whatever that is

After several days of staying inside, plus cooler temperatures, and elevating my feet, my left foot and ankle has for the most part returned to normal...  as I can clearly see again the veins on the top of my foot and the swelling is just barely noticeable.  As with every other experience, I learn that when riding in the car for two hours or more and regardless of how I try to extend my left leg, I am simply going to need to wear a compression stocking.  

These stockings are easy to find in Drug Stores even though they are less than medical grade, they still provide adequate compression.  I had purchased a medical grade compression stocking at the very beginning of my ordeal...  that is to say after foot surgery to remove a melanoma in 2013...  and, when the leg did not swell as much as was anticipated by the Surgical Oncologist, I was informed only to wear the stocking as needed.

We were all under the impression at that time my melanoma was gone, but in 2017 it returned in my groin area with a vengeance and obvious bias against my body...  I started infusions of Opdivo and Yervoy and a year later my Oncologist suggested that I undergo radiation treatments that would be accompanied by on Opdivo treatments as the radiation was inclined to supercharge the Opdivo...  the concept worked perfectly in my body but my Lymphedema remained.

At one point I thought my days in the Hot Tub were over but after submerging myself in the hot liquids for 30-40 minutes, my left leg show no signs of swelling, so I continued my ritual of hot water relaxation unless I noticed swelling which was typically caused now by too much sitting without legs elevated.

Oncologist and Treatrment

Today, is my monthly visit to the Cancer Center for my Opdivo treatment.  Every other month, I see my Oncologist and this is one of those days.  I will also be told of the results of my recent CT scan and I am particularly interested in the lesion on my liver as reported by my gastrointestinal doctor after a recent colonoscopy.  He wanted to do an MRI, but when I shared that info with my Oncologist, he said that we would do a CT scan first since I was on the schedule to have one soon.

The other issues that I have with my Oncologist revolve around whether or not I am going to be receiving monthly IVIG treatments instead of every other month.  And, the reason why I an concerned about this is that my sinus infections return the month I am not receiving IVIG treatment, plus my Dermatologist just prescribe medication for a skin infection on my face that has gotten down into the hair roots.

I get to the Cancer Center about 7:30 am and by the time I am done, I am typically leaving around 10:30 am...  strange how it takes me 3 hours to have lab work taken, see my Oncologist and receive a 30 minute treatment...  one would think that each area should take no more than 30 minutes including the wait...  or, about 90 minutes and one can stretch that to 2 hours just to make sure...  but, it takes me 3 hours...

Labs and OPDIVO

Every 4 weeks, I have my OPDIVO infusion to regulate and control my Melanoma Cancer that I have had for about 6 years...  and, while no one will point-the-finger, the literature indicates that contracting Melanoma is entirely possible as a side effect of taking chemo drugs:  Cytoxin and Fludara.  I received both Cytoxin and Fludara for 6 months when being treated for non-Hodgkin's Lymphoma which I am currently being treated for as well and currently just entered my 13th year of treatments, starting back in 2009.

For half those 6 years, my infusions were given to me by accessing my veins in either the right or left arm until one vein accessing hurt like hell, so I decided to have a port inserted on the right side of my chest.  It is a dual port so that the actual port will last longer or can still be used if one side goes bad.

So, every 4 weeks, I get my OPDIVO and every other month on the day that I get my OPDIVO, I see my Oncologist just to see how I am doing.  I take that opportunity to talk about any side effects that I think have been lingering an especially long time, or if I am experiencing something that I should not be experiencing...  like constant sinus infections.

Because of on-going sinus infections and continued anemia and a low immune system and low platelet count, my Oncologist decided to put me on monthly IVIG infusions.  But today, it is just an OPDIVO infusion and I can go.

I start about about 8:00-8:30 am and since the infusion only last 30 minutes, I am usually out by 9:00 am at the latest and back home by 10:00 am just in time for a late breakfast or brunch of perhaps an omelet and/or grits along with an English Muffin.

We get very used to our routines.

The Day After

Yesterday, I had my 42nd Opdivo infusion which means I have been receiving Opdivo for 3.5 years now and while my body seems to be tolerating it pretty well, I am still experiencing cumulative symptoms of night sweats, fatigue, and loss of appetite.

I also met with my Oncologist who was not that concerned about a lesion on my liver but since I was scheduled for a CT scan, he would pay close attention to what it showed for the liver.  He was also not that concerned with my 6 weeks of night sweats every night because there was so many issues that could be causing that to happen to my body...  again, he would be mindful of my sweating in the future.

He was a little concerned that the month after my IVIG infusion, my sinus problems were returning so he was going to write new orders for me to receive IVIG every month...  Not only would this help my sinuses but when I was receiving IVIG every month, I actually felt wonderful both mentally and physically.

Other than these comments he was pleased with all my test results and was going to continue with all my treatment like before with no changes.

OPDIVO: Immunotherapy

My morning starts early this morning...  6:30 actually...  where once up, I shower, grab a quick cup of coffee and then leave for UT Cancer Center to receive my monthly infusion of Opdivo...  I have had about 40 infusions so far and it has been the key factor that has kept my Melanoma from growing and spreading.  My Oncologist has informed me that I will be taking Opdivo for the rest of my life or until the cumulative side effects become too adverse for my body to handle.

Every other month, I visit with my Oncologist and I am looking forward to today's visit because the results of a HIDA scan showed there was a lesion on my liver and I am anxious to see how he reacts to this news...  especially since I am past due for a SCAN....

My day will begin by the nurses accessing my PORT and drawing blood, then I will visit with my Oncologist which could take me waiting another 30-60 minutes depending upon what is happening.  Once that takes place, I typically make appointments for my next visits, then back to another waiting room until there is space available for me to receive my infusion.

I arrive at UT Cancer Center at 7:30 am and usually finish around 10:30-11:00 am...arriving back home in time for lunch.

Good News is Good News Mostly

Good News is always good news I suppose since good news is never misconstrued as bad news and I suppose vice versa is applicable here as well...  but, who in their right mind ever thinks like that???

My visit with my Oncologist was nothing but good news.  All the results from my blood work show improvements in all areas except the number of red blood cells still making me a little anemic and the results from my most recent CT scan show the damn tumor in my lung SHRINKING even though the doctors say it is too early and with a biopsy to define it as cancer.

So, the meds I am taking for my Melanoma, my Opdivo, more than likely were responsible for the results of this shrinking tumor...  which now beg the question:  how did the tumor get here in the first place?  So...  one could probably say will relative confidence that Opdivo KILLS but it does not prevent...  and, I suppose one is just as good as the other...  for  person like me...

Today's infusion of Opdivo marks #40 which in and of itself is a great milestone because many people do not make it past #10 without having some sort of adverse side effects...  but my body tends to tolerate rather well, other that ruining the functionality of my Thyroid that will require medication for the rest of my life

Still...  it was a good day at the doctor's office...  but, there is still this other problem of which we must contend and the Oncologist thinks that I should see a gastrologist since my symptoms are in their area of expertise...  ironically, I am seeing one in a couple of weeks for a colonoscopy but the question is:  do I update the doctor with this new information before or after the procedure?

What an interesting life once one gets beyond 60...

Opdivo Day

Today was my day to have blood work done, see the doctor and get the result of the PET scan, and receive Opdivo treatment.  Days like today start out at 6:00 am and end at noon when I return home as was the case today.  My PET scan indicated really positive results in that it reported LOWER METABOLIC ACTIVITY on this scan than was measured on my last PET scan 6 months ago...  One could say that both my cancers (Lymphoma and Melanoma) and it is difficult to distinguish between the two without a biopsy being analyzed are SLEEPING...  at least for the time being.

The PET also indicated that I had severe coronary artery disease and that the bottom lobe of my lungs had collapsed which in and of itself is not that critical unless it persists...  my weekly exercising routine which was postponed this week, could improve my lungs by deep breathing while exercising.

HOWEVER, there was a downside on the PET scan and that was that it picked up an 8 mm nodule in one of my lungs that could be the result of an infection or could be the beginnings of lung cancer or simply could be a benign tumor.  I will have another CT scan performed in 6 weeks and depending upon what that scan shows, my oncologist will decide if a biopsy needs to be performed...

WAIT...  WAIT...  WAIT...

• I have to wait on my prostate biopsy results.
• I have to wait on another CT scan
• I have to wait on the results of another CT scan
• I have to wait on a lung biopsy date
• I have to wait on the result of a lung biopsy

OPDIVO (Nivolumab) linked to Arthritis

        

Case reports on 13 cancer patients suggest that a small number of cancer patients taking the immunotherapy drugs ipilimumab and nivolumab may be at some higher-than-normal risk of developing autoimmune joint and tissue diseases, including inflammatory arthritis, according to a preliminary study by Johns Hopkins Medicine researchers.

“I don't think anyone is particularly surprised that rheumatologic disorders might be a complication of drugs that boost the immune system,” says study author Laura C. Cappelli, M.D., a rheumatologist at the Johns Hopkins University School of Medicine. But the new study, however small in sample size, she says, is believed to be the largest published case series of a link between the drugs and the diseases.

The patients described in the new case report make up only about 1.3 percent of the total patients treated with drugs — singly or in combination — at The Johns Hopkins Hospital from 2012 to 2016, Cappelli says, but if further research confirms a cause-and-effect relationship, the rate is likely an underestimation of how common rheumatologic diseases are in patients taking so-called immune checkpoint inhibitors. She notes that patients with only mild joint pain, for instance, or those with already deteriorating health from their cancers may not have been referred to the rheumatology clinic for their symptoms.  READ ENTIRE ARTICLE...

MY CONCERNS:  As a cancer patient who has been and is currently being treated for Melanoma with monthly infusions of OPDIVO, I have been to a orthopedic doctor who tells me that my arthritis is not just getting worse but my X-rays show that my spine (because of the arthritis) should belong to a much older person...  as my lower back problems have worsen during the last year.

Opdivo Day

Once a month,  I have an early morning drive down to the UT Medical Cancer Center for my 30 minute infusion of Opdivo for my Melanoma.  I mention early because if I don't get down there by 7:30/8:00 am then if it very difficult to find a parking place....  right beside the Cancer Center that is...  I can drive over to the parking garage and take the elevator to the ground floor and walk over to the Cancer Center but it seen, at least by me, as an inconvenience.

When I started these Chemo Treatments in 2007/2008, the parking lot in front of the Cancer Center stayed half full all day long...

When I finished today at 9:30 am, all the spaces were taken, people had parked along the curb where there was space, and there were a dozen cars circling around the lot waiting for people like me to leave. 

Since UT Medical Center is a public medical facility, I am sure that the increase is because many of the other private hospitals are refusing to care for these patients with limited or no insurance...   and, I have noticed over the last 12 years or so that the caliber of the patients has decreased...   in that the way they are dressed, their hygiene, and the way they talk including poor grammar.

Being an English Major in College, I notices these things...

A nurse asked me today, how long was I going to be getting these treatments and I replied, "until I die or they no longer work."

Keeping the Faith for Over A Decade

ODYSSEY is a Greek epic poem written by Homer (a poet) about the long journey of a man named Odysseus (Greek King of Ithaca), or a long and eventual journey or experience...

My journey/experience has lasted almost 13 full years and while this journey started with one cancer:  non-Hodgkin's "B" cell Lymphoma, treatments for that cancer resulted in me having to remove 4 Squamous Cell Carcinomas on my upper body and a Melanoma off the bottom of my foot as well as upsetting the balance of my Thyroid.  Interestingly, surgery did not prevent my Melanoma from aggressively returning.  

My body, over the 12+ years, has suffered bouts with nausea, violent vomiting, constant and extreme fatigue, as well as the stress of weight gain (due to steroids) and the anxieties associated with my cancers becoming aggressive and unstoppable.What has been the most traumatic is not the nausea and vomiting because they can be offset or stopped with drugs and/or visits to the ER if necessary which is what I had to do several time; but the constant and extreme fatigue...  pills WILL NOT STOP fatigue from taking place...  Once fatigue starts, it NEVER leaves...  HOWEVER, recently it appears that my body has finally come to terms with its fatigue and is no longer (at least temporarily) present to the extent that I do not want to do anything.

WILL EVERYONE experience what I experienced?  Maybe or Maybe Not, the experience could be the same, no as bad, or worse...  each individual is different...  Last year, radiation was used with Opdivo infusions to KILL THE MELANOMA and it worked whereas in some individuals under similar circumstances, the combination has not worked.

Forgot to Mention

A couple of years ago, I had 6 doses of unusually high radiation over a 4 month period to combine with Opdivo and quickly kill my Melanoma...  at least, those were the results of the clinical trials held at MD Anderson in Texas.  Each dose lasted 20 minutes and I had one each week for 3 weeks.  After a period of 3 months, 3 more doses were administered to me in the same format and after another week, I underwent a PET/CT scan especially designed for Melanoma staging.  My Melanoma had been SUBSTANTIALLY BEEN REDUCED and an interested and very positive result was the fact that my non-Hodgkin's "B" cell Lymphoma had been SUBSTANTIALLY REDUCED as well.

Once the OPDIVO was supercharged by the radiation, no more radiation treatment were required and the reductions of both the Melanoma and Lymphoma continued to take place.  My body was demonstrating exactly how the treatments were supposed to work which made me feel WONDERFUL to say the least.

A year later, there is still some minor reductions in both cancers, but DEAD TISSUE can be felt in my groin at the crease of the upper thigh.  There are numerous lumps of various diameters just below the surface that will remain there for the rest of my life...   they will never disappear unfortunately.  Right now, I can feel them with my fingers and feel them without my fingers when I have sat in a chair for an extended period of time like when watching a movie.

Sometimes, it just feels mentally odd that there is DEAD MELANOMA in my groin.

I Like Vanilla Cappuccino

Sometime around 2000 +/-, our father was hospitalized at the VA Hospital in Norfolk, VA after eating a variety of shell fish on the Outer Banks of NC.  When my wife and I visited him, my brother asked me if I wanted to leave the room and get a cup of coffee, especially since our father was sleeping.  When we got to the lobby, there was a Starbucks and my brother suggested that I try a Vanilla Cappuccino.  I agree...  and, the rest is history.

I used to drink my coffee black and regular, then I shifted to black and decaf, then I shifted to decaf with  2-teaspoons of Sugar Free Cappuccino Mix.  I also stop at Starbucks but not as much since it is rather expensive (at least for me) and recently McDonald's has been offering Vanilla Cappuccino which is about as pricey as Starbucks.

Yesterday, when I return back to our community from getting my OPDIVO treatment, I decided to reward myself with McD's Vanilla Cappuccino and instead of just getting one, I splurged and purchased 2 cups...

Sometimes, one just has to reward one's self...  but this time it was justified because I had an excellent PET scan report.

Still, I wonder how long these good reports will last.  I don't think about that often but it is always in the back of my mind...  and perhaps, I will never get one and simply die of old age.

Once you get cancer and live for more than another decade and realize this could go on forever, it is important to appreciate EVERYTHING around you and reward yourself every once in a while, simply because it is the right thing to do at the time.

Thyroid Issues Now

During my visit with my Oncologist, I mentioned that my body was heating up (not hot flashes) in the morning and afternoons and that in the morning I noticed a light sweat all over my upper body that smelled really bad.  My Oncologist said that some thyroid tests would be done just to make sure that there were no problems.

Unknown to me but known to the Oncologist was the fact that Opdivo can/may cause thyroid problems, especially over a long period of usage and the treatment today was my 34th of just Opdivo alone with the knowledge that I had previously had about 6 treatments of Opdivo along with Yervoy before having radiation.

The Oncologist called the house while I was driving back from the hospital and told my wife that my thyroid levels were too high and that some medicine was being called into our pharmacy.  Armed with this new knowledge, I must now go through the slow process of trying to regulate my thyroid which can be a pain-in-the-ass sometimes.

PET Scan Results

I met with my Oncologist this morning before my treatment and was informed that my PET Scan no growth with my cancers which is good news, but bad news in that there was NO REDUCTION either which is what I wanted to see;  however, my Oncologist says while a reduction is preferred that he will take a no growth result.  I suppose that he is right...  but...
results showed

What I also discovered after mentioning hot flashes and stinky sweats and more tests were performed that I have a malfunctioning thyroid which was totally caused and a typical side effect of OPDIVO...

This is one of the big drawbacks of getting just about any type of cancer and that is the fact that treatment for one cancer can cause another cancer or it can cause other problems to develop inside the cancer patient's body.

A Week From Today

On April 23, 2020, I am scheduled for and will not miss an appointment with my Oncologist along with monthly lab work and an Opdivo Infusion for my Melanoma.  This next appointment is important to me.

Why?

I will get the results of my PET scan and I will be able to tell my Oncologist that for the first time in my 12+ year journey, my nausea has all but disappeared and my fatigue has become intermittent instead of daily.  Constant daily fatigue is what has been keeping me from exercising because it has been hard for me to simply push through.

Yesterday, I started my exercise routine again by riding on the stationary bicycle for 20 minutes and walking 1/4 mile on the treadmill at a speed of 3.0 and while that does not seem like much...  a gradual buildup is what needs to be done giving my body a chance to adjust to what I am inflicting upon it.

The week of my appointment I will increase my bike exercise to 30 minutes and increase the treadmill to 1/2 mile.  Then, all things remaining ok, I will increase my treadmill each week until I am walking 2 miles and I will gradually increase my peddling speed until I feel like I am racing.

My exercise routine should last about 60-90 minutes.  Once I am there, I will either exercise every other day or go for 5 days and take two days off...  not sure which approach is best...

Why am I doing this?

• I feel healthier when I exercise.
• It is good for my heart and to improve my ejection fraction.
• It helps my body fight the cancer inside.

12 Years, 4 Months, 14 Days, 3 Hours, 8 Minutes

Since I was diagnosed with non-Hodgkin's "B" cell Lymphoma...  I was 60 years of age...  and, was Dean of Students at ITT Technical Institute in Knoxville, TN.  Obviously, it was quite a shock to both me and my wife and totally unexpected.  Actually, it was my family doctor that noticed I had lost 30 pounds in 6 weeks and sent me off for further testing that resulted in a liver biopsy and the diagnosis of Lymphoma.  The specialist then referred me to an Oncologist at UT Medical - Cancer Center...  a Dr. Wahid Hanna from Cairo, Egypt which I took as a good omen because I had attended high school in Cairo, Egypt from 1962-1966.

After having my first PET scan, I began a monthly infusion of Rituxan, a chemotheraphy drug that took about 4-6 hours to administer which included pre-meds for nausea and which, over the years had no adverse side-effects on my body which was amazing to me but totally expected by Dr. Hanna.  I continued with the Rituxan treatment since it was keeping my Lymphoma from growing until I relocated to Florence, Kentucky to work as Director of Education at a proprietary school there and my new Oncologist whose name I cannot remember, decided to add Cytoxin and Fludara to my Rituxan infusions that left me violently sick each month.  I still never lost my hair.

After a year, I returned to Knoxville and Dr. Hanna refused to authorize Cytoxin and Fludara with my Rituxan and a few years later was diagnosed with Melanoma on the bottom of my left foot that all my doctors thought was a wart until it kept returning and a biopsy was taken.  The melanoma was surgically removed and four years later moved into my groin with a substantial presence.   Rituxan was replaced with Triandra for Lymphoma 0and Odivo and Yervoy for Melanoma.  Because there was a substantial amount of Melanom, surgery was impossible.  A year later, Yervoy was stopped and I received 6 intense radiation treatments.

A team of Cancer Specialists at UT Medical - Cancer Center wanted Dr. Hanna to focus on the Melanoma and leave the Lymphoma alone because there was no evidence that these drugs for two different cancers would work well together.  Dr. Hanna refused to follow their advice and 6-9 months later, Dr. Hanna was proven to be correct and a PET/CT scan revealed a substantial reduction of both my Lymphoma as well as my Melanoma.

A couple of months later, a bulge appear on the left side of my neck and after several unsuccessful biopsies, it was surgically removed and along with lymph nodes being removed, dead melanoma was also removed...  MY CANCER TREATMENTS HAD WORKED PERFECTLY...

Side Effects

2:16 am} and, I cannot sleep...

Retired, so I worry about very little other than what am I going to do tomorrow...

My eyes and body feel tired but when I lay down in the bed, I feel wide awake and just lay there wondering when the drowsiness will put me to sleep...

So, here I am drinking coffee with a little Cappuccino Mix in it to make it swallow a little easier...   and actually, I think I have become addicted to this sugar-free or fat-free mix because straight coffee no longer tastes good to me which is typically all I used to drink after being in the Navy...

I was in communications and worked in the Radio Shack on the USS Recovery ARS-43 which was a salvage and rescue ship.  It had less than 100 men aboard her and every two years she would spend 6 months in the Mediterranean Sea patrolling outfitted with the latest surveillance gear before leaving port at Little Creek, VA which was part of the Norfolk Naval Base.

About 1:00 am this morning I awoke from sleep because I had to take a piss and after laying back down in my soft, comfortable warm bed, laid there for a hour unable to return to sleep.

Because of my non-Hodgkin's "B" cell Lymphoma, I take 2 - 140 mg tablets of IMBRUVICA  daily which is considered an Immunotherapy Drug, not a Chemotherapy Drug.

Common side effects of Imbruvica include:
low platelet count,
diarrhea,
neutropenia,
anemia,
fatigue,
musculoskeletal pain,
muscle spasms,
joint pain,
swelling of the extremities,
fever,
upper respiratory tract infection,
cough,
shortness of breath,
nausea,
bruising,
indigestion,
constipation,
rash,
abdominal pain,
vomiting,
decreased appetite,
swelling of the mouth and lips,
urinary tract infection,
pneumonia,
skin infections,
sinus infection,
weakness,
nosebleed,
decreased appetite,
dehydration,
dizziness, and
headache.

Of course, my inability to sleep could be coming from my enlarged prostate and a PSA count that was twice what it was last year and over the recommended amount and the reason why I am going to a Urologist to see if I have prostate cancer next week.

In addition to my IMBRUVICA, I am receiving a monthly infusion of OPDIVO to control my Metastatic Melanoma which in a matter of 41/2 years went from my foot to my groin to my neck; although, when it was removed from my neck, the Melanoma was DEAD thanks to the radiation treatments I had along with the OPDIVO infusions; apparently, when OPDIVO is combined with radiation, the radiation super-charges the OPDIVO to fight the Melanoma...   lucky me...

Common side effects of Opdivo include:

• fatigue
• rash
• itching
• cough
• upper respiratory tract infection
• swelling of the extremities
• shortness of breath
• muscle pain
• decreased appetite
• nausea
• vomiting
• constipation
• diarrhea
• weakness
• swelling
• fever
• abdominal pain
• chest pain
• joint pain
• weight loss
• irregular heartbeat
• eye inflammation
• infusion-related reactions
• increased amylase
• increased lipase
• dizziness
• numbness and tingling
• skin peeling
• skin redness and
• psoriasis.

YEAH...  I was pretty frigging amazed when I saw these two lists too...  I have been taking immunotherapy drugs for two years but I have also been taking chemotherapy drugs for 10 years, all of which basically has the same side effects...   

WHILE sleeplessness in not on the list...  WTF...  I experience it once or twice a week like clockwork...