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...

Chemo Day

Every 4 weeks, I am scheduled for an infusion of Opdivo to counteract and prevent the melanoma inside my body from growing...   and, every 4 weeks, either the day before or the day after, I am scheduled for an infusion of IVIG to help boost my immune system back to normalacy...

The Opdivo infusions once started last 30 minutes whereas the IVIG infusions once started last almost 2 and 1/2 hours...  which still seems like a short period of time to me since my previous chemo infusions of Rituxan lasted 5-6 hours.

I am also taking 2 - 140mg tablets of Imbruvica to counteract and prevent my non-Hodgkin's lymphoma from growing as well...  those pills are usually taken in the mornings.

Chemo Day and IVIG Day, are both early morning days as I am up at 5:30 am and leave the house a little after 6:00 am, arriviug at UT Medical about 7:15 am depending upon traffic which can never be predicted, since there seems to be traffic accidents every day of the week, even though their times vary.

Instead of putting an IV into my arm, I have had a port inserted in my upper chest on the right side just below the colar bone...  it is a dual port, so each time it is used, the nurses try to use the other access point to make sure that both openings are constasting flushed and kept from clogging.

I call this chemo day but in reality it is immunotherapy day which has virtually no adverse side effects for me these days but at one point, I was experiencing fatigue, nausea, loss of appetite, and general malaise.

I am in my 14th year so it would appear that something is working.

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.

Living With Cancers & Heart Disease

For the last 13 (almost 14 years) I have been dealing with heart disease from the standpoint of having a heart attack from 3 blocked heart arteries and 5 stents inserted.  Results are that my heart is working normally but I have to be really careful with what I am eating and really careful with my physical exertion so as not to overdo it.  I have handicapped liscense plates because I can no longer walk very far without being out-of-breath.

For the last 13 (almost 14 years) I have been dealing with preventing two types of cancers from simultaneously growing in my body and for the first 10 years was not that successful but for the last 3 years have been relatively successful...

During the last 13 years, I have experienced surgery, chemotheraphy, immunotherapy, and radiation.  My treatments have caused me to experience nausea, fatigue, anemia, and a destroyed immune system along with damaging my thyroid.

The treatments that I took to suppress my Lymphoma caused me to contract Melanoma which from the getgo was very aggressive and moved from my foot to my groin to my neck...  however, once it got to my neck and was surgically removed, the cancer cells were all dead.

I get a PET scan or a CT scan every 3 months to see if my cancers are displaying any metabolic activity.  My next scan is this coming Monday or in two days.

Other than having cancers hanging over your head and having to watch what you eat, and how you must dress when out in the sun, I am living a relatively normal life. 

I don't eat red meat except for maybe once or twice a year.  I don't eat fried foods except for maybe once or twice a year.  I stay away from sugar but that is not as easy as it sounds.

I eat veges, chicken, veal, a variety of beans, and fish mainly.  The fish I prefer is Salmon, Cod, and Flounder.

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.

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...