So Friends - an interesting question for long term CLLers.
As this form of Cancer will never be the principle cause of our demise - should we consider putting the CLL Treatment Drugs to one side, to deal with the side effects.
My CLL journey started when I was diagnosed in 2001 and treated at various times over 16 years giving me "CLL survival" BUT also the same number of years of related complications needing treatment are that are now increasing in frequently and severity.
ALSO as the root cause of the majority of my complications can be attributed to the CLL drugs - like a known side effect - diarrhoea leading to low potassium..... perhaps my CLL maintenance drug (Idelasilib.) should be reduced in dose or discontinued entirely?
The list of my medical problems seems to grow with each visit.
Obviously low immune system - Shingles & warts.
Which then may lead to IVIG Infusions.
Chest infections - nebuliser treatment.
Antibiotic & Antiviral Courses.
Now I have an appointment with an Endocrinologist - for extreme backache due to Cushing Disease caused by the drug I take for my diarrhoea. Then there are more noticeable side effects of Cushion’s D
•thinning skin that bruises easily
•reddish-purple stretch marks on the thighs, stomach, buttocks, arms, legs or breasts
•fat deposits that develop in the face, causing it to become round
•muscle or bone weakness
Then there is the 3 monthly Clinical Trial - CT scan / Haematology.
Combined with blood test - Biopsy and other tests!
Some weeks it seems like I live at hospital – and I’m a visitor at HOME!
I am not saying that I am ungrateful for all this medical expertise and medicine that I am receiving - just reduce them in quantity or dosage!
Then concentrate on a more healthy lifestyle taking less toxins into my body, avoiding unhealthy situations and W & W!
I take 17/18 tablets per day to either "protect" me and/or "maintain" my CLL. At each consultants appointment I'm asking if I still need that level of drugs?
So back to the original question - do I take a "holiday" from CLL treatment?
Well the answer is --- YES – I started last week after discussing this approach with those people that matter, my family, and my Consultant.
There is an informal paper from ASH 2015, where the question was asked “What happens when CLL Patients stop taking Ibrutinib or Idelalisib.” Whilst you can read the whole paper / conclusion – what does stand out for me is “A significant number of patients who came off these in Inhibitors did not need any immediate treatment as their diseases continued to be well controlled after therapy was discontinued.”
A sound hope from the Bible can help you have joy despite chronic ailments. (Romans 12:12) The Bible foretells a time when “no resident will say: ‘I am sick.’” (Isaiah 33:24) God will then cure chronic illnesses that are beyond the power of modern science to solve. For example, the Bible describes the reversal of the aging process this way: “Let his flesh become fresher than in youth; let him return to the days of his youthful vigor.”—Job 33:25.