My Ongoing Battle With Cancer

HEADS UP FOR THOSE IN A SIMILIAR SITUATION

My cancer journey began in 2007 when I was 60 years old.  Prior to that I was never sick (after typical childhood illnesses), not even with a cold or the flu.  I exercised regularly, lifted weight, 80% active, and ate healthy.  I had also stopped smoking and stopped drinking alcohol 20 years earlier.

My first diagnosis was non-Hodgkins Lymphoma (SLL) and went on a monthy infusion regimen of Rituxan (infusion lasted 6 hours).  No side effects.  A few years later, I woked in Northern KY (came home on the weekends) and that Oncologist put me on a regimen of Rituxan, Cytoxin, and Fludara (over two days).  Side effects were extreme and I ended up in the ER two days later to stop cronic vomiting.

HINT:  ask for 2 different kinds of nausea meds with 4-6 hour intervals.  That way, you can take a nausea pill every 2 hours.

HINT: start taking nausea meds two hours after the end of your infusion...  DO NOT WAIT UNTIL YOU FEEL SICK...  TOO LATE...

Twelve (12) months later, I returned to TN, and my original Oncologist put me on a regimen of a monthly infusion of Triandra (2-3 hours).

Three years later, I was diagnosed with Melanoma which some experts say was actually caused by the repeated use of Cytoxin and Fludara.  However, malpractice would have never been proved.

My melanoma started in my foot, moved to my groin, then moved to my neck.  The movement took place 4 years after, a surgeon removed the melanoma from my foot with clean margins.

NOTE:  bear in mind, that my Oncologist had to deal with two cancers simulataneously (and still does) both of which had turned aggressive and surgery was out of the question.  What worked for me was Odivo/Yervoy combination for a few months, then Opdivo and Radiation.  The radiation supercharges the Opdivo.  For me, it worked....

Whenever you are given chemotherapy or immunotherapy you will be given steroid to reduce the risk of nausea plus other meds as well.  These steroids will make you gain weight.  I gain 50 pounds in 10 years and manged to lose 30 pounds.

NOTE:  the way I lost weight, which may not work for everyone, is counting my calories.  I focused on eating 1,500 to 1,800 but not over 2,000.  I also ate small meals five times a day and my focus was on SOUPS.

I am now in my 15th year of being treated for cancer and in my 12th year of being treated for 2 cancers simultaneously.

Here is what I constantly live with:

1. Low white blood count (no immune system)

2.  Low red blood count (anemia)

3. Low Platelet count (blood clotting issuse)

4. Constant fatigue (mild to severe - varies)

5.  Loss of taste

6. Thyroid problems

7. Lymphodemo (moderate)

8. Depression (mild to moderate)

9. Weight gain

10. Diarrhea/Constipation (mild to moderate)

11. Mouth Sores (mild to moderate)

12.  Must avoid direct sunlight exposure (UV Clothing)

13. COVID might have killed me so I was very careful!!!

14.  Must avoid being in large crowds in closed in areas

15.  Must maintain a strict diet

NOTE:  My cancer(s) are made worse by a triple bypass heart attack that I had also when 60 years old.  Plus, a five level lower back fusion.

Ongoing Cancer Treatments

Fifteen years ago, or 2007 to be more precise, I was diagnosed with non-Hodgkin's Lymphoma or SLL and in 2008 started treatment being infused with a drug called RITUXAN.  Two years later, I had a silent heart attack and instead of having a triple bypass, I had 5 stents inserted into 3 left heart ateries, 3 of which went into the LAD.  In 2012, and quite possibly because of my cancer treatments, I contracted Melanoma which started in my foot, spread to my groin, and then to my neck.

Over the course of my cancer treatments, I have had chemotherapy, surgery, radiation, and immunotherapy to simultaneously control my two cancers.  I am not eligible for any clinical trials because I am battling two cancers simultaneously.  Currently, I am being treated with immunotherapy drugs:

• Opdivo infusions for my Melanoma - monthly infusions
• Imbruvica (pills) - 240 mg daily
• IVIG infusions to help boost my immune system

This past Thursday, I had my 55th Opdivo infusion and so far there have been no adverse side effects except for night sweats, anemia, low immunity, and fatigue.  My body seems to be tolerating it fairly well according to what my Oncologist said during our office visit.

On Monday morning, I go in for my monthly infusion of IVIG to help boost my immune system and according to my Oncologist, there is no reason why I cannot have both infusions on the same day...  which is what I will be doing from now on starting in February.  I will have my morning infusion, then go to the cafeteria at the hospital, grab a bite to eat, surf the web, and go to my second infusion an hour or so later and be home by 4/5 that afternoon.  Long day, but don't have to go twice.

As far as I can tell, I will be taking some sort of cancer treatments for the rest of my life, even if the doctors are confident that the Melanoma has left my body and is not returning...  because my SLL is the type Lymphoma that never leaves one's body once it is there.  What a pisser...

Opdivo Day At UT

Today, was Opdivo day...  with a 7:30 am arrival time that forced me to leave home no later than 6:30 am and an alarm setting of 5:50 am which to me is no different than 6:00 am but those extra 10 minutes gives me an opportunity not to feel like I m rushed and make a cup of coffee before I leave.

I see the Oncologist every other month and this appointment was set with the doctor so he could review the results of my CT scan that I had on Monday.  My results were good however there were a couple of spots that around a millimeter of growth which is almost insignificant...  but, for me, growth is growth.

My Oncologist did not appear to be too worried with the results and said that we were going to proceed as we have in the past....  in other words, there will be no changes in my treatments.

However, when I asked about the discoloring on both of my forearms and if that was caused by the treatment, he first comment was, "they aren't bruises?", to which I replied NO.  So, after examining them further, he was concerned about why there was blood just under the skin and wanted me to see a Dermatologist.

After 13 years of treatment and going into my 14th year in 2022, I am grateful that my recent test results are extremely positive and hope that this positive rhythm will follow me forward.

Downside of IVIG Infusions

According to the Clieveland Clinic, prior to infusions of IVIF patients are usually pre-medicated with acetaminophen 650 to 1000 mg, diphenhydramine 50 mg.  Acetaminophen is for headaches basically that this drug might cause and diphenhydramine is to prevent an allergic reaction or nausea.  However, at UT Medical, I have decadron instead of diphenhydramine which is a steroid and in my body is much more powerful because every once in a while, it prevents me from falling asleep even though I take 2 benadryl at 6:00 pm.

Last night was especially important for sleep as I have back-to-back early days (awake at 5:30) since my second early wake-up call is for my monthly OPDIVO infusion.

Idiot or "no brainer me," has forgotten to swap out these two days or have IVIG on Fridays instead of Wednesdays because of the use of steroids so I will not have any problems falling asleep.  Obviously, I have yet to make that swap because here it is 1:30 am and I am wide awake drinking coffee.

Once you start these monthly infusions, it is necessary for optimum affectiveness to have them every 4 weeks...  and while that can be played with once or twice (in case of vacations), it is not something that the Oncologist likes to do.  However, I have yet to exercise that option and once in a while my body makes me pay the price...

Surviving & Living With Cancer(s)

When I was 60 years old (2007) I was diagnosed with non-hodgkin's "b" cell lymphoma and was told by my oncologist that this type of cancer would never leave my body.  my cancer was staged at level iv which in many cases is terminal but in my case it was because the lymphoma was in my bone marrow.  

My treatment began with monthly infusions of rituxan which took about 4-6 hours depending upon how busy the chemo nurses were.  For several years my lymphoma grew but grew slowly and slightly.

in 2010, i experienced a heart attack while walking on the treadmill and an angioplasty operation revealed that I had three blocked arteries.  between 2010/2011, I had 3 heart surgeries and had 5 stents inserted and have had minimal problems since.

In 2011/2012, I worked in kentucky for a few months and the oncologist there ordered Cytoxin and Fludara in addition to my Rituxan and it is widely believed that one of those first two drugs caused me contract melanoma.

After my melanoma was surgically removed from my foot, five years later it migrated to my groin and it was difficult to ascertain if it was the lymphoma or melanoma that was growing or both.

My oncologist treated me for both cancers and for a while, he was not sure if he was going to be successful in stopping their growth.  So, in 2017/2018, Radiation was added to my monthly infusions.

Fortunately, the two individualized treatments worked and both my cancers started to experience minimal growth if any growth at all.  Again, with a biopsy, my oncologist was unable to determine if it was the lymphoma or the melanoma that was growing.

After 13 years of chemo treatments, surgeries, radiation, and immunotherapy treatments, I have left with the following situation with which I must live:

1. hypothyroidism
   
2. Lymphodema in my left leg
3. Weight gain of 50 pounds (of which I have lost 30)
4. anemia due to very low red blood cell count
5. no immunity due to very low white blood cell count
6. low platelet count
7. intermittent nausea
8. High susceptability to squamous carcinomas (of which I have had 6 surgically removed)
9. constant mild to not so mild fatigue
10. no taste of food
11. swollen prostate
12. extreme sensitivity to sun rays
13. Extreme sensitivity to humidity
14. constant sinus infections
15. constant facial skin infections
16. Pink skin pigment has disappeared
17. Mouth soars
18. minor loss of hearing
19. intermittant blurred vision
20. intermittant diarrhea 
21. an increase in tooth decay
22. increase risk of afib
23. allergic reactions to bug bites
24. increased risk of deyhydration
25. minor bouts of depression

Are all of these related to my cancer treatments?

Well...

maybe yes...

maybe no...

Some could be related to old age or not...

But, the fact remains that I deal with this list on a daily basis and have gotten to the point where I don't even think about it anymore...  My limitations have just become a part of my life.

I don't really think about living with cancer, I just think about living my life, one day at a time, while trying to make the most out of each day.  If I make the most out of each day, then I consider myself to be living a successful life and living a successful life is, for me, a form of happiness.

There were many days still lodged in my memory banks where I laid on the tile floor in the bathroom, puking my guts out....  I remember my body convulsing and arching as I tried for many seconds to bring up through my throat what my body did not want.

I remember those episodes lasting for hours as my body heaved and pulled from the inside...  my upper body became super hot and broke out in sweat that made me feel I had just gotten out of the shower.

I was completely exhausted from the vomiting and laid on the tile floor waiting for the next episode to grab hold of me...  Sometimes, it would get so bad and of a long duration that my wife would take me to the ER.

i don't like being around stangers in a waiting room when i am convulsing and vomiting and trying to puke out what little is left inside.  It is embarrassing and rather humiliating but necessary.

Those days are gone for good I hope...

Cancer Treatment Day

Despite the fact that I awoke early and cannot go back to sleep, I am usually up early on these days anyway...  so, it is only an hour early which is not that much of a lost sleep night...  and, for the last 4 days, I have had to get up early each and every one of those to go to some kind of doctor visit, treatment, or procedure.

This morning my routine is (arrivig driving the 45 minutes to the cancer center) to check in and have lab work done...  this is place where they access my port, so I make sure that I have put plenty of numbing cream on the skin covering the port...  it must stay on an hour or more.

The next step is to wait the see the Oncologist who is trypically seeing loads of patients each day and always seems to fall behind as the day progresses so I try to see him as early as possible.

Then I return to the lab waiting room to be called for my treatment after checking in again.  Within 15-20 minutes, I am taken to a chemo suite of 6 chairs.  

UT Medical Cancer Center has 10 suites on the 4th floor of the center.

For some reason, I always wait another 30 minutes or so for the OPDIVO to arrive and then my infusion lasts only 30 minutes and I am outta there.

I arrive at 7:00 am and typically leave at 10:30/11:00 and much of that time is due to waiting.

Today, I will be informed of the results of my CT scan that I had on Monday...  so, I am really interested to see if there has been any metabolic activity inside me.

IVIG Day

WHAT IS IVIG?

Intravenous immune globulin ("IVIG") is a product made up of antibodies that can be given intravenously (through a vein).

Antibodies are proteins that your body makes to help you fight infections. Each antibody made by your body is slightly different, because it fits like a lock and key to every foreign substance (such as a piece of a virus or bacterium) that gets into your body. Over the course of your life your body makes thousands of different antibodies as you are exposed to different infectious organisms that your body considers to be "foreign."

IVIG is prepared from the blood donated by thousands of people, to make a super-concentrated and very diverse collection of antibodies against many possible infectious organisms your body might encounter.

WHY DO I NEED IVIG?

IVIG is used primarily in two situations.

One reason you might need IVIG is if your body does not make enough antibodies. This is called "humoral immunodeficiency." The IVIG simply provides extra antibodies that your body cannot make on its own. The antibodies usually last for several weeks to months and help your body fight off a large variety of infections. If you are getting IVIG for this reason, you will need to get it on a regular schedule.

A second reason you might need IVIG is if your immune system has started attacking your own body by producing antibodies directed against your own cells. Conditions in which this happens include:

●Destruction of your own blood platelets (known as immune thrombocytopenia [ITP])

●Destruction of your own red blood cells (known as autoimmune hemolytic anemia [AIHA])

●Attack on your nervous system, such as nerves that control your breathing (in Guillain-Barré syndrome) or nerves that control sensation (for example, in chronic inflammatory demyelinating polyneuropathy [CIDP])  SOURCE:  UpToDate Patient Education


I receive monthly infusions of IVIG because my Oncologist fears that my low immunity and anemia from over a decade of cancer treatments that have included:  surgery, radiation, chemotherapy, and immunotherapy, puts me in a HIGH RISK CATEGORY of contracting other life threatening illnesses.

Today, is the day that I get my monthly infusion.  I will arrive at UT Medical Center around 7:00 am and finish around 10:30 am and like always will be receiving premeds to keep from my getting sick.  The nurses will access my port on the right side of my upper body.

Of the two and a half hour treatment, I will probably sleep for about 90 minutes due to the premeds...  it's weird at first as I feel lightheaded and weak and my legs feel restless...  then, my eyes get heavy and the next thing I know I am waking up and there's about 30 minutes left.

A New Perspective

For over 12 years I have been battling with non-Hodgkin's "B" cell Lymphoma or SLL (see my blog My Cancer Pilgrimage) and after 5-6 years of receiving monthly chemo infusions, my body contracted Melanoma that started on the bottom of my left foot, spread to the left area of my groin, then to the left area of my neck.  So, for 6-7 years I have been fighting off two cancers simultaneously.  Also about 12 years ago, I had a heart attack (not associated with my cancer treatments) that resulted in the recommendation to have a triple bypass but I went to NYC and had my arteries cleaned out and stents inserted...  5 stents in all.

I feel incredibly fortunate to have lived with cancer(s) for over a decade and I am still alive...  it must not be my time...  or someone or something is looking out for me...  it cannot just be coincidence...  that's too simplistic and melodramatic.

Each morning when I wake up and before I go to the bathroom, I sit on the side of the bed and just appreciate the fact that I actually woke up again.  This may not seem so special to you, the reader, but to me it is very special.  

In 2018, I had radiation treatments to slow down the spread of melanoma along with Opdivo infusions because the radiation was supposed to supercharge the Odivo...  which it did...  working perfectly...  and, several months later my Oncologist let it slip out that my cancer(s) had turned very aggressive and he was not sure if he was going to be to get them both under control...

I never knew this...  and, I am glad that I did not because my whole attitude would have changed and no doubt I would have gotten depressed, perhaps very depressed...  and, when one is fighting cancer, depression seems to make things worse.  ODD...  but a positive attitude actually helps fight the cancer sometimes.

But, each day is a blessing for me.

An appreciation of life.

A chance to see the beauty of life FREE OF CHARGE.

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...