How Are You?

When people know you're ill, the question often asked is "how are you?" "How are you?" is a rather subjective question whether or not the person inquiring realises it.

Most of the time, I would have to say that I'm doing fine or that things are great because in the general scheme of things, that's the honest truth. Even when I came out of remission last October and had to be rushed into a brand new chemo regimen consisting of Venclexta and Kyprolis, I felt pretty good. If it wasn't for the fatigue, I honestly don't think I would've noticed any change. For others, the mileage might vary, but as always, I'm speaking from my own experience here. 

I recently traveled to New York to see Dr. J at Mount Sinai and in typical fashion, he had plenty of observations and recommendations. I didn't get a scolding for not having started the Venclexta when he originally prescribed it last year at this time, so for that I was grateful. He was a little concerned about my platelet and white blood cell counts, which had been trending low for the last few months. He suggested that maybe we should look into reducing my Venclexta dosing from the current seven-days a week cycle to only five-days a week. He thought that in doing so, the apparently effective medication would back off and give my blood a little chance to bounce back. At the same appointment, he handed me a print out from the FDA Daily that stated that since the FDA hadn't fully approved the use of Venclexta to treat Multiple Myeloma, the drug would somehow know this and I might die, unlike those whose blood cancers were part of the FDA's golden circle of approval. 

"How are you?" 

I guess I'm still fine, but that last part's a little weird, thanks. 

I took my hastily written notes to a nearby Starbucks and jumped on my Chromebook to rifle off an e-mail to Dr. V and Nurse Janice before said notes stopped making sense to me. For those who are on chemo, you know that the opportunity for things to stop making sense could happen quickly or not at all. So, off went the e-mail.

I was fortunate to meet with my primary team back in Cleveland on the Friday after I returned from New York. Since Dr. V was unavailable for this appointment, I met with one of his capable associates and Nurse Janice. The associate had with her a printed version of my e-mail with Dr. V's notes on it. We discussed the dosing reduction and the other points that were brought up. Dr. V decided that the platelet and white blood cell counts, while low, were not exceptionally troublesome and I agreed as I looked at my recent results on MyChart. Dr. V had instead decided the thing we should go after was my seriously depleted immunoglobulin numbers. Since I don't care about what I share and I think it might help others, it looks like this:

• MPA IgG Serum = 283 mg/dL (acceptable low end 717 / high end 1,411)
• MPA IgA Serum = 8 mg/dL (acceptable low end 78 / high end 391)
• MPA IgM Serum = 6 mg/dL (acceptable low end 53 / high end 334)

As you can see, the numbers are pretty low. 

"How are you?"

I still feel fine!!! I suppose I'm actually fine (or I'm super lucky) because despite having practically no immune system in place, I haven't gotten pneumonia, the flu or whatever else may have been on a doorknob or gas pump handle I may have touched during the last six or seven months. As Darth Vader once said to Luke Skywalker in observation of his Force abilities, "Impressive... most impressive."

The solution offered to remedy this issue is to get me on another infusion called IGIV. What is IGIV? According to an online source...

IGIV is a highly purified preparation of IgG antibodies extracted from the pooled plasma of 1,000 to 60,000 qualified adult donors using methods that vary by manufacturer. IGIV comprises more than 95% IgG, with trace amounts of IgA and IgM. IGIV is available as a lyophilized powder or as a formulated liquid solution, with final concentrations of IgG ranging from 3% to 12%, depending on the product. IGIV does not contain thimerosal or any other preservative. IGIV products vary in their sodium content, type of stabilizing excipients (eg, sugars, amino acids), osmolarity/osmolality, pH, IgA content, and recommended infusion rate. Each of these factors may contribute to tolerability and the risk of serious adverse events. All IGIV preparations must have a minimum concentration of antibodies to measles virus, Corynebacterium diphtheriae toxoid, poliovirus, and hepatitis B virus. Antibody concentrations against other pathogens, such as Streptococcus pneumoniae, cytomegalovirus, and respiratory syncytial virus, vary widely among products and even between lots from the same manufacturer. 

The plan is to see how this works over the next few months. I will have it administered once a month on one of my Super Fun Chemo Time Fridays and will need to go in about 3-4 hours earlier in order for them to do this. This is, of course, like all other things, "pending insurance approval". But before all of this happens, I have to thank my wonderful employers for being so accommodating when these schedule changes need to be made. 

"How are you?"

Ask me later.