PAN Foundation

A couple of years ago, my Oncologist decided to stop my chemo infusions to treat my non-Hodgkin's Lymphoma deciding that I should take PILLS instead...  These pills fall into the category of IMMUNOTHERAPY instead of chemotherapy.  And, because they are pills, my supplemental Medicare insurance puts them into a different category where there is a COPAY...  there is NO COPAY for infusions.

The PILLS I have been taking go by the name of IMBRUVICA although there is another name for them which I cannot remember...  and my COPAY each month is $3,000 which goes down a little bit, the more months that I have been taking them.

FORTUNATELY, I was able to get a grant from the PAN Foundation and my entire COPAY is covered each month by this grant.  However, the grant has to be renewed each year and there is not guarantee that I will receive this grant each year.

My renewal month is February...

I will need to call them in the next couple of days.

Wish me luck mentally if you have read this.

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...