Relief

 (Edited. Incomplete and inaccurate information was provided to me that has been cleared up. Edits are in bold italics.)

Oliver & Carma, Bergen Norway 2023

The oncologist said that she would probably recommend treatment, depending on the results of several cancer staging tests. "There are two treatments for this type of lymphoma," she said, referring to SLL/CLL. "You could take one pill for the rest of your life or two pills for two years." 

My immediate question is, "What are the side effects?" Unspoken, because I was listening to everything the specialist had to say. The answer would be known soon enough. 

Having researched the question and deciding that, if necessary, I would consider taking one or both of these drugs, my next question is, "What's the cost?" 

I learned yesterday that Medicare does not cover these specialty drugs (including generic and biosimilar types). [This was the incomplete and inaccurate information I was given by someone in my insurance benefits team who probably lacks experience and knowledge. The generic names were not in the drug formulary, the system did not automatically show the brand names as an alternative, and so they were not found. Not only does my insurance provide some coverage for the drugs (my copay is 32%), the more important fact is that Medicare policy/law limits the out-of-pocket cost patients must pay to $2,100 in 2026. See facts about drug coverage at medicare.gov] Here are the US retail prices. 

Brukinsa (Zanubrutinib) - US price $128 per tablet

Venclexta (Venetoclax) - US price $81 per tablet

Estimated cost per year for 1 tablet each daily: $76,285 

[My cost will be no more than $2,100 this year, and may be a little more in 2027.]

I learned that even some patients in the UK are buying these drugs from India mail order pharmacies to save money. The current prices to get only Venetoclax (Venclexta) from India: 

India lowest price found today for the one-pill option is $3.60 per 100mg tablet

Assuming that only 1 tablet of 100mg is prescribed, if I bought it from India, the annual cost might be $3.60 per tablet, or $1,314 per year for the rest of my life. If I live to be 90 instead of 80, assuming the price does not increase over time, that would mean paying $13,140 to have those last decrepit 10 years. 

My latest question is, "What did people do before this chemical cocktail was developed?" 

For thousands of years, billions of humans lived and died without these drugs. I can do that! 

That means, I can spend $13,140 on travel instead of putting it in the pocket of a pharmaceutical company. I can spend the quality time I currently have doing things I enjoy vs gambling on cancer treatment that is A) not a cure, and B) likely to cause misery; i.e., do more harm than good. 

I titled today's blog Relief because that is what I feel. 

Instead of facing (gulp) two years of feeling dreadful -- when I thought insurance had it covered and  felt compelled to suffer for the comfort of my family -- I now face two years of, "Where do you want to go next?" [I heard from others in an online CLL support forum that they are taking these two drugs and are not experiencing side effects, or at least no significant ones. I am feeling more confident and comfortable about starting treatment when the time comes. For now, thanks to my numbers being good enough, I can continue to "watch and wait" - a phrase used to sum up the monitoring processes, which are determined by the CLL specialist (hematology/oncology doctors). It generally involves occasional blood tests and a bi-annual CT scan.]

Relief. 

I am back to square one, where I started on this lymphoma ride (thrills not included). Enjoy life while I can. Exercise my legal right to terminate a terminal illness on my own terms, thanks to the California End of Life Options Act (Zen and the Art of Living with Cancer). [My plan as of today is to focus on strenthening my bones and taking time to travel to visit family in Utah and to spend quality time with my son, who is interested in going to Germany and Amsterdam. We are planning a trip together.] 🥰

Next: Travels with Good Carma