Dermatology Day

Today...  is my quarterly visit to my Dermatologist... 
sometimes, I forget that my Oncologist directed me to visit a Dermatologist every 3 months after my Melanoma decided to relocate itself to my groin area from my foot.  Since I have been visiting with this Dermatologist, I have had half a dozen SQUAMOUS CELL CARCINOMAS surgically removed from my body, the first one appeared right smack dab on the top of my head.

I'll never forget that one because, a few days after surgery, my wife and I were going on a cruise, so instead of letting it heal naturally, the surgeon put a couple of stitches in it.  It felt rather odd going around the ship with a patch on my head, especially at dinner where everyone had nothing better to do that make sure you got their full attention when you entered or had to pass by their table.

Incidentally, Squamous cell carcinomas are a NATURAL BYPRODUCT of receiving chemo and it appears they will appear even after you have received immunotherapy as well...  at least for me they have.

Immunotherapy

Immunotherapy can:

Educate the immune system to recognize and attack specific cancer cells Boost immune cells to help them eliminate cancer Provide the body with additional components to enhance the immune response

Cancer immunotherapy comes in a variety of forms, including targeted antibodies, cancer vaccines, adoptive cell transfer, tumor-infecting viruses, checkpoint inhibitors, cytokines, and adjuvants. Immunotherapies are a form of biotherapy (also called biologic therapy or biological response modifier (BRM) therapy) because they use materials from living organisms to fight disease. Some immunotherapy treatments use genetic engineering to enhance immune cells’ cancer-fighting capabilities and may be referred to as gene therapies. Many immunotherapy treatments for preventing, managing, or treating different cancers can also be used in combination with surgery, chemotherapy, radiation, or targeted therapies to improve their effectiveness.

Unleashing the power of the immune system is a smart way to fight cancer:

1. The immune system is precise, so it is possible for it to target cancer cells exclusively while sparing healthy cells.
2. The immune system can adapt continuously and dynamically, just like cancer does, so if a tumor manages to escape detection, the immune system can re-evaluate and launch a new attack.
3. The immune system’s “memory” allows it to remember what cancer cells look like, so it can target and eliminate the cancer if it returns.

Almost 14 Years

Six months from now, I will be celebrating the 14th year passing since I was diagnosed with cancer...  and, five years into my treatment for non-Hodgkin's 'B' cell Lymphoma and probably because of certain treatments, I was diagnosed with Melanoma that subsequently moved from my foot to my groin to my neck where it was surgically removed and found to be dead because of my radiation and immunotherapy treatments.

After my two cancers were under control, my Oncologist informed me that he wasn't sure if he could stop them from growing because both of them had turned aggressive, but he stayed with the most recent protocols in fighting both cancers and did not back off on either one; consequently and fortunately, the two different types of treatments complemented each other and he was able to get both my cancers under control, at least for the time being.

I told my Oncologist that he should published his treatment of me and get some national credit, which he declined and said he was just fine with his life as it currently was.

Looking back at these 14 years, there were times where I was sicker than a dog and vomiting so consistently that my wife had to take me to the ER...  those were days that I would rather not relive under any circumstances unless I absolutely had to.

• Am I lucky?
• Did I have the right Oncologist?
• Was God looking out for me?

Ya know...  I think it was a little bit of all three...  but, to be quite honest with you (not to imply that I have not been), I have felt and continue to feel that there is something left for me to do...  and, that is why I am being kept alive.  I have no idea what it might be but I have spent my entire life preparing for it nonetheless.

Living with cancer is not as comfortable as one might think it is, especially if one is doing fine and feeling good, but there is a constant threat hanging over one's head as to what might happen...  if this...  or if that...

Plus, one must eat differently than others.  One must not drink alcohol if in very small quantities like a glass of wine once a week or once a month.  One must stay out of direct sunlight with UV clothes of the highest sunscreen.  One must get a good night's rest and one must learn to manage one's stress as it does have an impact.

I find myself eating lots of veges, onions, garlic, peppers, black beans, fruits, and other foods high in anti-oxidants.   I may have a hamburger and/or a hotdog once a year.  But, I may have a pizza every other month.

The killer of all cancers is a LOW IMMUNE SYSTEM and more people die of some other disease that they die of their cancer because of their low immune system.  For example, I would not have survived COVID.

The one thing that I do not get enough of is exercise but my fatigue which is minimal most of the time is still strong enough to provide me with the motivation to exercise...   even just walking around the community for 30 minutes would help.

Cancer Treatment on Dental Care

Most of the literature that revolves around cancer treatments, including radiation, as it pertains to harming one's teeth, states that this might happen if and when the radiation is around the neck or above...  and, while I believe that the literature is correct in its analysis, I believe that it fails to properly address the long term impact of both chemotherapy and immunotherapy on one's teeth.

I say this because, I am in my 14th year of cancer treatments that includes over 150 infusions (both chemotherapy and immunotherapy, 6 radiation treatments, and about 3 years now taking daily immunotherapy pills.  Here recently, I have had 3 situations where parts of my tooth have chipped off while eating, causing 3 crowns, and 1-2 root canals...  and, I say 1-2 because I have yet to find out the exact status of this 3rd chipped tooth.

Interestingly, all of my life, all of my dentists and there have been several have told me that my teeth are very strong and that I should experience minimal cavities, and minimal problems with my teeth...  and, that I should consider myself fortunate.

SO...  why were all these dentists wrong?  Or, were they wrong?  

Sure, I can accept the fact, that as one ages, one's teeth has to age as well but not after being so solid and strong...  I would think...  therefore, the only other factor, and yes I do take proper care of my teeth, is all of my cancer treatments has had a cumulative  effect on my teeth.

Good Health Friday

My reports from the Oncologist are back and my blood works has improved, my red blood cells and white blood cells are still low below the norm, but my body seems to be dealing with the two types of immunotherapies that are being pushed into my body to fight Non-Hodgkin's Lymphoma and Melanoma.  My thyroid is not getting worse.  My nausea has all but disappeared.  My fatigue has all but disappeared as well.  I am on a routine of monthly IVIG which over a couple of months will assist in my improvements.  And, it appears that all my internal organs are functioning the way they should.  My sinus infections are gradually disappearing and the antibiotics are improving my facial skin infections.

I will continue to have a CT scan every three month but it will no longer be swapped out with a PET scan until some metabolic activity shows up on the CT scan...  The urgency there has been somewhat mitigated although it could worsen in time...  but, I don't think about that.

My heart monitor showed that I have no signs or any concern for afib returning so I am off of Xarelto and my bruise will begin to fade and my arms will look normal again.

My blotchy skin on my arms, face, neck, and shoulders is a sign that the drugs are killing the cancer and returning it to its normal pink color.

My cancer journey began in 2007 and in 2021 and after 13 years of treatment, I am beginning to show better than normal improvement, given where my Oncologist said I was 2 years ago from the standpoint that he was not sure he could stop what was happening to me.  At the end of 2021, I will end my 14th year and begin my 15th year...

Time flies when you are having fun...

Thinking Out Loud

My time to awake each morning is usually between 7:30 and 8:00 am each morning and I go to bed at night around 10:00 pm so I am receiving about 8-9 hours sleep minus the 2-3 times that I get up each night to urinate which is rather normal for a person of my age; although, I have heard that as we get older that we actually need less and less sleep.

Each morning when I awake, I still feel a little sleepy but rather than go back to bed, I force myself mentally to get up and begin my day and within minutes my sleepiness has faded and oftentimes has disappeared completely.  First, I give our 3 cats a treat, then take my thyroid pill, then put a little food in the cat's 3 bowls, then prepare my coffee...  all of this takes about 15-20 minutes.

Cable FOX News is selected on our big screen and I sit on the couch, drink coffee, and begin to write...  and this, is my daily routine unless I have an early morning appointment with the doctor.  My appointments at UT Medical at usually in the mornings so I can find a parking space and are in the afternoons at all my other appointments.

I have been mowing the yard once a week on Thursdays, vacuuming our above ground pool every Saturday, weed eat every other Friday, take the recycle out every other Thursday, and the trash out every Friday, and whether I need to relax or not, I get into the hot tub for about 45 minutes every other night.  The time in the tub is fine because I have turned the temperature down to 98 degrees...  it is the massage jets that I really want to use.

My life is like this now because my cancer treatments are preventing my two cancers from growing as I get a CT scan or a PET scan every other month.  Regardless of my cancer(s) and their diagnosis, I eat healthy focusing on fish, chicken, beans, vegetables, fruits, nuts, and Pita bread.  I consume no alcohol, minimal soft drinks...  but, I do treat myself to a loaded PIZZA every other month.

My  daily nausea and fatigue has disappeared as have my night sweats although there is always the fear and/or concern that they could always return on day.  I also live with the THREAT that my cancers either one or both could TURN AGGRESSIVE as well.  My treatments are all immunotherapies plus my monthly infusion of IVIG to help bolster my immune system to fight infections.

My12 year treatment has left me with a damaged Thyroid and a very low immune system along with anemia.  My skin is blotched all over my arms, neck, and face as if I had suffered burns from a fire.  My vision is slightly less than it was along with a reduction in my hearing.  My teeth seem to be unaffected by all the treatment.  The thinning of the hair on my head is due to old age not my cancer treatments.  Fortunately, all my internal organs seem to hold steady with their functionality, including my heart which was damaged 12 or so years ago.

I am a 73 year old man that seems to have the health status of a rather healthy 73 year old man...  the only exception is that I am not exercising like I should be exercising and if I do not return soon to that exercising, my body will pay the price over the next few years.  However, I am still doing yard work from time-to-time which is good but hardly makes up the difference.

It Never ENDS...

In 2007, I was diagnosed with Non-Hodgkin's "B" Cell Lymphoma which is also referred to as SLL (Small Lymphocytic Lymphoma) and quite interestingly is treated the same way and considered to the be companion of CLL or Chronic Lymphocytic Leukemia.  Leukemia starts in the blood while Lymphoma starts in the lymph nodes...  it is also widely believed that SLL can turn into CLL at some point in time.

In 2012, I was diagnosed with braf negative acral lentiginous Melanoma in the foot which was surgically removed and later moved to the groin and then to the neck.  It is entirely possible that my Melanoma was contracted because of the drugs I was taking for my Lymphoma.

Over the past 13 years (2021 begins my 14th year) I have received:

1. 150+ chemo infusions
2. 60+ Hemoglobulin infusions
3. two surgeries
4. 6 radiation treatments
5. 20+ CT Scans
6. 20+ PET Scans
7. 2 MRI's
8. Immunotherapy 

In 2009/2010, I experienced a heart attack and underwent 3 heart surgeries to install stints rather than enduring a triple bypass.

For the rest of my life, I will have:

1. monthly chemo infusions
2. daily immunotherapy pills
3. 2 CT scans a year
4. 2 PET scans a year
5. 4 full body scans by a Dermatologist
6. quarterly visits to a Cardiologist
7. dealing with constant fatigue and nausea
8. dealing with intermittent night sweats
9. monthly hemoglobulin infusions
10. constant anemia
11. on-going anxiety attacks
12. a non-existent immune system
13. susceptibility to other diseases
14. the anxiety of my cancers turning aggressive

And...  while there may not be that much to report from one day to the day, the items listed above have a direct and cumulative effect/affect on one's state-of-mind which causes sporadic depression...  to mention this every day or even every week or monthly seems kind of REDUNDANT to say the least...  but, let me assure you that having cancer, especially the kind that cannot be cured, is NOT FUN AT ALL.

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.

I Have Watched Myself Grow Old

Ever since 1990, when I moved to TN from NC at the age of 43, I have been aware of myself physically and mentally rather than via instincts and have, for the last 30 years, watched myself grow old...  older and older each day...  each week...  each month...  each year...  each decade...  and, the aging process is not always that pretty or welcomed.  I lost my closest friend along the way who died of colon cancer in his 60's and my other closest friendship was ended when I decided to have my taxes prepared locally.  Losing friends is not so easy...  and, making new ones is harder than one might expect...  so, for the last 30 years, my friends have been my co-workers and/or the friends that my wife brought into this marriage...  who would not really be my friends any longer if we were ever to divorce...

So...  from age 43-60, there was hardly any aging process at all...  at least none that I could detect.  I was eating healthy, sleeping appropriately, never got sick, never got the flu, and my wife and I were fast walking 5 miles a day around our community (so it was not always flat) and the healthy eating included hardly ever any red meat, no fried foods, minimal sugars and/or sweets, minimal alcohol, and mostly fruits and vegetables...

My blood pressure was low and my cholesterol was low (both the good and the bad) and the only issue that could have bothered me during those 17 years of relative BLISS was the amount of STRESS that I encountered each day.  My career had taken off in that I was working 60+ hour weeks and bring work home on the weekends...  and, it was not because my bosses demanded that amount of time but because I wanted to give it or that I felt like my job needed it as I always went above and beyond.

AT THE AGE OF 60...  my world turned to shit...  not literally but figuratively or metaphorically I suppose would be better because my world of health turned upside down...  I was diagnosed with non-Hodgkin's Lymphoma (SLL) and started treatment in 2008.  In 2009, it was discovered that I had experienced a heart attack while walking on the treadmill and exploratory surgery indicated that I needed a triple bypass.

My LAD (the widow maker) was blocked 100% and two other arteries on the left side of my heart were both blocked 90%.  Instead of having a bypass, I had my arteries cleaned out and stints inserted that took 3 operations in 2009 and 2010.  There procedures were performed at Presbyterian Hospital in NYC.  My Cardiologist said that because I was so damn healthy that my body created its own bypass by created dozens of vessels to transport blood which is what actually saved my life.

In 2012, Melanoma appeared on the bottom of my left foot probably brought by some of the drugs used for my chemo treatments and after being surgically removed reappeared in force in 2017 which resulted in me receiving radiation treatments.  Fatigue and nausea were my daily routine until my doctors discovered that my Thyroid was out of whack due to my chemo treatments.  And, while the fatigue and nausea have almost disappeared, they are lurking just around the corner I fear.

A prostate biopsy in 2020 left me with negative results but a high PSA puts me in a situation where I will be monitored often from now on...  And, because I had several polyps removed in a 2018 colonoscopy, my new routine for that procedure is now every 2 years instead of 5 or 10...  with my next one being scheduled for January 2021.

One would think that this would be enough, but the past July I was admitted to the ER with a Staph infection in my blood and because of afib, heart failure, kidney failure, and a blood pressure of 79/59, I was admitted to the hospital for 6 days.  Now my Cardiologist has informed me that once one has experienced afib, it will be with them for the rest of their lives.

My last PET scan that showed no metabolic activity in either of my cancers revealed that I have a tumor in one of my lungs that is just a few CM's in length (too small to biopsy) and I am scheduled for another CT scan in a couple of weeks to see if it has grown.

Because of all the chemotherapy, immunotherapy, and radiation my body virtually has no immune system and is experiencing anemia...  so, every other month, I am now receiving an infusion of IVIG which is supposed to help supplement what the treatments have taken away...  but, I am still susceptible to catching almost any other disease...  especially COVID...  and, that scare has kept me in the house unless I have to leave for any doctor's appointment...  but, when I do, I ALWAYS WEAR A MASK...

For 17 years I did everything right and was a model of physical health, exercise, and eating habits, but that made no difference at all...  and, while I am not angry or feel wrong for what I did, I still don't really understand why it happened to me and not someone else...  especially that someone who does not take care of themselves like I did.

Today, except for some major and minor adjustment, I feel pretty good about myself and my health and if you were to see me on the street, you would not suspect that I had a serious heart attack and had been receiving cancer treatments for 13 years.

Always Something

If you recall, my cancer was first diagnosed when I was 60 some 13 years ago and there is a good probability that because of all the various chemo regimes through which I went, one of them caused me to contract a second cancer of Melanoma that traveled from the bottom of my left foot to my left groin area in just under 5 years.  And, it is because of this migration that I was given radiation along with an immunotherapy of Opdivo which seems to have substantially reduced it and actually killed a bunch of it.

It is difficult to ascertain whether the dead cells are Lymphoma or Melanoma because they are a combination of both and the only way to be sure is to perform a biopsy which if they are dead seems rather irrelevant.  However, whenever I lay down on my back and feel around the left side of my groin, I can feel the lumps of dead tissue there that will never disappear and be constant reminders of what I have endured with my cancers.

Every day I take two pills for my Lymphoma and every day I take medication for my Thyroid because it was damaged by my cancer treatments.  Every month I have an infusion to control my Melanoma and every other month, I have an infusion of IVIG to help boost my low immunity and improve my anemia.  Every 3 months, I have alternative CT and PET scans to see if my cancers are still under control and every 3 months I have a full naked body exam by a dermatologist to see if my continued cancer treatments are creating any new skin cancers which is often the case as I have had half a dozen removed since this process was started.  AND...  every three years now because of my cancer treatments, I have a colonoscopy because my treatments could trigger cancer there.

Next month, I have a special CT scan to see if the tumor in my lungs has grown large enough so that a biopsy can be performed.

When one is living with cancer...  there is always something.

Immunotherapy

Immunotherapy is a type of cancer treatment that helps your immune system fight cancer. The immune system helps your body fight infections and other diseases. It is made up of white blood cells and organs and tissues of the lymph system.  Immunotherapy is a type of biological therapy. Biological therapy is a type of treatment that uses substances made from living organisms to treat cancer.

As part of its normal function, the immune system detects and destroys abnormal cells and most likely prevents or curbs the growth of many cancers. For instance, immune cells are sometimes found in and around tumors. These cells, called tumor-infiltrating lymphocytes or TILs, are a sign that the immune system is responding to the tumor. People whose tumors contain TILs often do better than people whose tumors don’t contain them.

Even though the immune system can prevent or slow cancer growth, cancer cells have ways to avoid destruction by the immune system. For example, cancer cells may: 

• Have genetic changes that make them less visible to the immune system.
• Have proteins on their surface that turn off immune cells.

Change the normal cells around the tumor so they interfere with how the immune system responds to the cancer cells. Immunotherapy helps the immune system to better act against cancer.

Several types of immunotherapy are used to treat cancer. These include:

Immune checkpoint inhibitors, which are drugs that block immune checkpoints. These checkpoints are a normal part of the immune system and keep immune responses from being too strong. By blocking them, these drugs allow immune cells to respond more strongly to cancer.

T-cell transfer therapy, which is a treatment that boosts the natural ability of your T cells to fight cancer. In this treatment, immune cells are taken from your tumor. Those that are most active against your cancer are selected or changed in the lab to better attack your cancer cells, grown in large batches, and put back into your body through a needle in a vein.  T-cell transfer therapy may also be called adoptive cell therapy, adoptive immunotherapy, or immune cell therapy.

Monoclonal antibodies, which are immune system proteins created in the lab that are designed to bind to specific targets on cancer cells. Some monoclonal antibodies mark cancer cells so that they will be better seen and destroyed by the immune system. Such monoclonal antibodies are a type of immunotherapy.  Monoclonal antibodies may also be called therapeutic antibodies.

Treatment vaccines, which work against cancer by boosting your immune system’s response to cancer cells. Treatment vaccines are different from the ones that help prevent disease.

Immune system modulators, which enhance the body’s immune response against cancer. Some of these agents affect specific parts of the immune system, whereas others affect the immune system in a more general way.

End of the week

Being retired, it is not easy to think about days of the week versus days of the weekend as all days seems to merge together...  but for me, I am aware of each day in that does this day leave me with intense side effects of my cancer treatments or does this day provide me with a break from those side effects?

Extreme Fatigue is what I usually experience each day and it usually sits there and barks at me like a dog needing attention as soon as I wake up in the mornings.

Today, my fatigue experience is not barking at me but waiting for me like a patient cat waits to be patted...  by rubbing their bodies against the legs of their owners...

Of course, in my case that might not be a good example because my Siamese howls at me as he rubs his body making sure that I know it is him...  there is nothing patient or quiet about him.

Today, I feel rested...
my eyes do not hurt...
my muscles do not ache...
my sinuses are not draining...
my ankles are not swollen at all...

I have no idea how long this condition is going to last if it lasts at all but I plan to enjoy it while it is here...

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...