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...

Healthcare Happiness

I am the only member of our parent's family that is dealing with serious health issues and while one could say that it is my fault...  I would tend to agree with that in part because I did not know how to manage my stress...  and, it is not managing my stress that caused me to have a heart attack about 13/4 yeras ago.  

Prior to my heart attack, I had stopped smoking, stopped drinking alcohol, stopped eating red meat, sugars, and fried food s decade before my heart attack actually took place.  Additionally, my blood pressure was low, my cholesteral was low, no family member with heart issues...  so NO TYPICAL MARKERS that underscore a heart attack...

Therefore it must have been stress...

About this same time frame, I was diagnosed with non-Hodgkin's "B" Cell Lymphoma and five years after that I was diagnosed with Melanoma that spread from my foot to my groin to my neck.  I am currently being treated for 2 cancers simultaneously and the meds do not seem to be fighting each other which is a good sign.

My healthcare costs are somewhere between $500,000 and $750,000 depending upon the various tests that I have to see if my cancers have spread.  These tests are typically a CT or a PET scan that I received quarterly.  I also have quarterly tests for my heart as well and since my PSA results are high, I have been seeing a Urologist and have had a biopsy of my prostate.  Since my nuclear stress test for my heart showed a blockage, I have had a recent heart cath that actually revealed NO PROBLEMS at all...  but, these tests are expensive.

My health is STABLE and that is why I have healthcare happiness...

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...

My CT Scan

Today was my quarterly CT scan to see if there was any metabolic activity in either one of my cancers:  Lymphoma and Melanoma.

Unlike PET scans, patients can eat or drink anything they want right up to the point that they start the machine.  Actually, a few minutes before because you have to lay down on this movable rack and they have to position your head and knees and arms.

Prior to any of this, a nurse must insert an IV line into your arm but in my case, I have a port for them to access so they have to call upon a more skilled nurse.  Wait time is usually 30 minutes or more depending upon how busy they are.

However, I was there at 7:30 am this morning and those nurses start at 8:00 am so I was the first person on his list.

Once the line is hooked up, they start they insert some kind of dye into your body that makes you feel like you have to go to the bathroom or for some that you peed in your pants.

The actually test is 3 passes in the machine and patients are usually in and out in less than 5 minutes.

The machine is like a huge doughnut hole so only a fraction of your body is inside the machine and the rack that you lay on can slide so that from your head down to your feet can be scanned.

A PET scan, you are a lot more enclosed...  almost your entire body...  and, it moves much slower so a PET scan will take about 15-20 minutes and for a while there is the feeling that you are in a coffin.  I usually tilt my head back so I can see outside the machine and that helps.

An MRI is different and you are totally enclosed and I have to be knocked out for that scan to happen.  I have only had one so far...  knock on wood as they say...

What's On My Mind Today???

Just got back from the University of TN Medical Center - Cancer Bldg. in Knoxville, TN after going through a PET Scan procedure...  Every 90 days, I MUST have a CT scan or a PET scan to determine staging of the cancers.  When cancer is staged, the Oncologist is informed by the Medical Physician interpreting the scans if the cancer has decreased/increased in size and/or spread to other organs in the body and/or started growing in a new location.

Over the 12 years that I have been treated for Lymphoma and the 6 years I have been treated for Melanoma, my cancers have increased, decreased, increased, spread, and maintained their size as new drugs are used to fight the disease.

Last year, my Oncologist discovered through a recent clinical trial at another hospital that when Opdivo and Radiation are used simultaneously that the results are more positive than negative.  When that cocktail of treatment was used on me, dead Melanoma cells were removed from my neck...  so, in my case, it worked perfectly.

Right now, my two cancers (non-Hodgkin's Lymphoma & Melanoma) are being contained...  at least those were the results from my last PET scan...  so, I am anxious to discover what these new results might be.
                                                                                                                       

ALSO, every time I leave home, I am really concerned about my health because of COVID-19 especially since I have NO IMMUNE SYSTEM of which to speak at all.  Today, I wore a face mask as well as disposable gloves.

Please take care of yourself and be careful when you leave the house...

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...