Conflicting Oncological Opinions

ONLY TWICE in my Cancer Pilgrimage have there been conflicting opinions as to how my cancer treatments should proceed.  The first conflict, was not really a conflict I suppose as much as it was different approaches.  I had temporarily relocated (for work) to KY from TN and the Oncologist in KY decided to give me a cocktail of 3 drugs instead of the 1 drug my TN Oncologist had been ordering.  This new cocktail was:  Rituxan, Fludara, and Cytoxin that I was given two days in a row, every month.  I experienced severe nausea and vomiting and had to be taken to the ER two day after my last day of treatment to get my vomiting under control.

When I returned to TN, my former Oncologist was rather annoyed at what had taken place in KY but since he could do nothing about it, simply proceeded with giving me monthly infusions of Rituxan only.  A couple of years after returning to TN, we discovered Melanoma on the bottom of my left foot which seemed like an odd place.  At first, we thought it was simply a wart.

From the research that my wife and I conducted, there was a possibility but it was not conclusive that the infusions of Fludara or Cytoxin that I had been given in KY could have caused my body to become more susceptible to Melanoma.

Our first thoughts were these:  Would you not have thought that Oncologist would have know about this risk and if so, why did the Oncologist in KY bring it to my attention?

This brings me to my SECOND CONFLICT OF OPINIONS when after my Melanoma had moved from my foot to my groin (four years later) and that it was inoperable because of its location and extensiveness, it was decided to have Opdivo/Radiation treatments simultaneously AND CONTINUE taking my IMBRUVICA pills daily for my Lymphoma.

The opposition's opinion was that the two treatments would conflict with one another.  At the time that this was being discussed, I did not know that my Lymphoma had turned aggressive and that my Oncologist really had no other choice but to treat both cancers at the same time and HOPE FOR THE BEST.

Fortunately for me, the best happened as the two treatments worked in harmony and did not conflict with each other and both my cancers were halted from their continued growth.  Today, I can feel the dead cancer cells in my groin with my fingers and sometimes if I drive for long periods of time or just sit, I can feel them pressing against something even though the pressing is in way hurting.

Marriages Tested

Because I have no idea when my body is going to experience night sweats, I sleep on a mattress that is not only double sheeted but has another layer of covering just from my waist up that is tucked in around the mattress on top of the other two sheets.  When I twist and turn in the night, the upper layer moves around and sometimes gets crumpled up making it a tad uncomfortable to sleep unless it is spread back out again...  so, every time I am up peeing which is usually about 2-3 times each night, I simply straighten out this upper layer as a matter of routine.

This practice is not something one thinks about all the time, it's just an added activity because of the side effects of my cancer meds.

Another issue that one does not think about all the time or at least I do not is the fact that most of the time my sense of taste and smell is gone and I cannot really taste or smell the foods that I eat, making everything just seem sort of bland.  However, this sensation does come and go and when I can smell and taste, I find myself wanting to eat everything I have not been able to taste even if I am not hungry.

There is a daily awareness of weight gain, night sweats, general fatigue, and depression that accompanies that struggle or battle or journey that one continues to have with cancer.  Each day is a little uncomfortable even if there is no one around to whom it can be admitted or shared due to the "HERE WE GO AGAIN" response.

Spouses get tired of hearing what YOU are going through when THEY are going through something equally as combative...  and, it is difficult for a cancer patient to think about others, when all these side effects are influencing only your behavior.

MARRIAGES SUFFER if one spouse has cancer, even if there are no children present...  CHILDREN make the SUFFERING worse.

Should You Use Xarelto?

Xarelto users sued Johnson & Johnson, Janssen Pharmaceuticals and Bayer Corporation, claiming they suffered from internal bleeding, wound leakage and infections after taking the popular anti-clotting drug. The drug's makers won six trials but agreed to settle thousands of lawsuits for $775 million in March 2019.

Side Effects

• Back pain.
• bloody stools.
• bowel or bladder dysfunction.
• burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings.
• coughing up blood.
• difficulty with breathing or swallowing.
• increased menstrual flow or vaginal bleeding.
• leg weakness.

With every cure there is a risk that something else might happen, but is that something else worse than what you are experiencing?

It is a difficult decision but it is a decision that MUST be made nonetheless which is why disease at a later age is better than at a young age because of your wisdom and the fact that you do not have to rely on someone else to make that decision for you.

Living With Cancer

If I remember correctly, I was diagnosed with non-Hodgkin's "B" cell Lymphoma in 2007 but my treatments did not start until 2008 for some reason because they had to watch it for 6 months...  sounds crazy but that was the protocol then.  So, as 2020 began 3 months ago, I had just entered my 13th year of treatment.

And, about 5 years into my treatment and after receiving some high powered chemo toxins, it was discovered (quite by accident) that I had Melonoma on the bottom of my left foot after first thinking it was a wart and having it cut off twice.  The Melanoma tumor was surgically removed and because of the skill of the surgeon, I did not lose any toes in the process.   And, since there was no protocols in place for a tumor that small and in the early stages, I received no
follow-up chemo treatments or radiation.  FOUR and a half years later, the Melanoma can back very aggressively in my groin and because of its extensiveness, could not be surgically removed this time.

Treatment for Melanoma was instituted and even though there was some disagreements between my Oncologist and his colleagues, my non-Hodgkin's "B" cell Lymphoma treatment continued not knowing if the two treatments would cancel each other out or not.  Radiation in my groin was added about 9 months later.

Well...  and, much to everyone's surprise ALL THREE TREATMENTS WORKED IN HARMONY and my cancers with both substantially reduced as was the indication of a PET/CT scan three months later.

ALL-IN-ALL and over the course of 12 years, I have had regular chemo, wicked chemo, surgery, radiation, IVIG treatment, Immunotherapy treatments and pills....   and, one would think that my body would have been RAVAGED by all this medical abuse.  AND, while I have been extremely sick and had to go to the ER six times to stop vomiting every hour or so, my body has been magically or spiritually resilient.

I have had 3-4 squamous cell carcinomas surgically removed that were typical side effects of the chemo, but NO HAIR HAS FALLEN OUT on the top of my head except that which was supposed to fall out because of my family predispositions.  While not hair has fallen out, my body has gained 30 pounds as a result of over 150 infusions that are always and only given after receiving premeds that are loaded with STEROIDS to prevent/reduce nausea.  It is difficult to lose steroid induced weight gain.


My skin has lost some of its pink pigment making it look like my arms and neck were slightly burned in a fire but other than that, I have more-or-less felt pretty good for the last 12 years, except for daily then intermittent nausea that was EASILY eliminated with pills...   so, it represented only minor inconvenience that is to say...  looking back.

With that said, let me say that for the last THREE YEARS, I have had to deal with chronic fatigue which has been a BITCH to live with, but recently even that has begun to disappear as I believe my body is finally adjusting to the problem...  consequently, I have begun exercising again.

How long with this last?

I have no idea...

ONE DAY AT A TIME, is my new lifestyle...  as I begin to learn what this new pill for my THYROID issues is going to do to me.

Saturday Sleepiness

This past Thursday, I had my monthly treatment and my every other month visit with my Oncologist to not just evaluate my progress but to give me the results of my recent PET scan and while those results showed NO GROWTH, both my cancer treatments were going to continue that is to say my daily intact of Imbruvica (Lymphoma) and my monthly infusion of Opdivo (Melanoma).  I also discovered that I had a thyroid disorder which would necessitate me taking another medication for the rest of my life...

SO, why am I dwelling on this especially since I already mentioned these facts in a previous post?

Simply answered:  On Thursday, I told the Oncologist that my nausea was almost non-existent and that my fatigue was intermittent...

Now, with thyroid issues, it is DOUBTFUL that my fatigue will ever disappear...   and, this is a PISSER because I just started exercising again; in fact, I am going to finish my second week tomorrow.

This morning I woke up and after drinking a couple of cups of coffee went back to bed and slept for an hour...  I was worried that my fatigue was returning when I woke up the second time, but after eating lunch, I felt like I had the energy to go downstairs and exercise which is exactly what I did.

CONCERNS:  My treatments for my two cancers and my newly discovered thyroid issues will cause my fatigue to return to the point that I will not have the energy to exercise and if I do not exercise that I will continue to gain weight which will negatively impact my already damaged heart functions.

LEVOTHYROXIN

Levothyroxine is a thyroid medicine that replaces a hormone normally produced by your thyroid gland to regulate the body's energy and metabolism.

Levothyroxine is given when your thyroid does not produce enough of this hormone on its own.

Levothyroxine is used to treat hypothyroidism (low thyroid hormone). It is also used to treat or prevent goiter (enlarged thyroid gland), which can be caused by hormone imbalances, radiation treatment, surgery, or cancer.

➡️IN MY CASE:  My thyroid got whacked out of shape because of my Opdivo Treatments for Melanoma.

SIDE EFFECTS       

• fast or irregular heartbeats;
• chest pain, shortness of breath;
• fever, hot flashes, sweating;
• tremors, or if you feel unusually cold;
• weakness, tiredness, sleep problems (insomnia);
• memory problems, feeling depressed or irritable;
• headache, leg cramps, muscle aches;
• feeling nervous or irritable;
• dryness of your skin or hair, and/or hair loss;
• changes in your menstrual periods; or
• vomiting, diarrhea, appetite changes, weight changes.

Thyroid Issues Now

During my visit with my Oncologist, I mentioned that my body was heating up (not hot flashes) in the morning and afternoons and that in the morning I noticed a light sweat all over my upper body that smelled really bad.  My Oncologist said that some thyroid tests would be done just to make sure that there were no problems.

Unknown to me but known to the Oncologist was the fact that Opdivo can/may cause thyroid problems, especially over a long period of usage and the treatment today was my 34th of just Opdivo alone with the knowledge that I had previously had about 6 treatments of Opdivo along with Yervoy before having radiation.

The Oncologist called the house while I was driving back from the hospital and told my wife that my thyroid levels were too high and that some medicine was being called into our pharmacy.  Armed with this new knowledge, I must now go through the slow process of trying to regulate my thyroid which can be a pain-in-the-ass sometimes.

12 Years, 4 Months, 14 Days, 3 Hours, 8 Minutes

Since I was diagnosed with non-Hodgkin's "B" cell Lymphoma...  I was 60 years of age...  and, was Dean of Students at ITT Technical Institute in Knoxville, TN.  Obviously, it was quite a shock to both me and my wife and totally unexpected.  Actually, it was my family doctor that noticed I had lost 30 pounds in 6 weeks and sent me off for further testing that resulted in a liver biopsy and the diagnosis of Lymphoma.  The specialist then referred me to an Oncologist at UT Medical - Cancer Center...  a Dr. Wahid Hanna from Cairo, Egypt which I took as a good omen because I had attended high school in Cairo, Egypt from 1962-1966.

After having my first PET scan, I began a monthly infusion of Rituxan, a chemotheraphy drug that took about 4-6 hours to administer which included pre-meds for nausea and which, over the years had no adverse side-effects on my body which was amazing to me but totally expected by Dr. Hanna.  I continued with the Rituxan treatment since it was keeping my Lymphoma from growing until I relocated to Florence, Kentucky to work as Director of Education at a proprietary school there and my new Oncologist whose name I cannot remember, decided to add Cytoxin and Fludara to my Rituxan infusions that left me violently sick each month.  I still never lost my hair.

After a year, I returned to Knoxville and Dr. Hanna refused to authorize Cytoxin and Fludara with my Rituxan and a few years later was diagnosed with Melanoma on the bottom of my left foot that all my doctors thought was a wart until it kept returning and a biopsy was taken.  The melanoma was surgically removed and four years later moved into my groin with a substantial presence.   Rituxan was replaced with Triandra for Lymphoma 0and Odivo and Yervoy for Melanoma.  Because there was a substantial amount of Melanom, surgery was impossible.  A year later, Yervoy was stopped and I received 6 intense radiation treatments.

A team of Cancer Specialists at UT Medical - Cancer Center wanted Dr. Hanna to focus on the Melanoma and leave the Lymphoma alone because there was no evidence that these drugs for two different cancers would work well together.  Dr. Hanna refused to follow their advice and 6-9 months later, Dr. Hanna was proven to be correct and a PET/CT scan revealed a substantial reduction of both my Lymphoma as well as my Melanoma.

A couple of months later, a bulge appear on the left side of my neck and after several unsuccessful biopsies, it was surgically removed and along with lymph nodes being removed, dead melanoma was also removed...  MY CANCER TREATMENTS HAD WORKED PERFECTLY...

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...