Showing posts with label Non-Hodgkins Lymphoma. Show all posts
Showing posts with label Non-Hodgkins Lymphoma. Show all posts

Sunday, May 7

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.