Possible progress, peripheral neuropathy, pills, and Penn's patient portal

I had fun with using "p" so often but it is all about my last couple of weeks...

I had my 4th R-CHOP treatment a few weeks ago, with a reduced dose of vincristine as am having some numbness in fingertips and bottom of feet, and more recently the left side of my chin and lower lip.  I figured it had to be a branch of the trigeminal nerve, a cranial nerve that was causing the numbness on my face. Dr Porter was not so sure, he checked my other cranial nerves and they were OK and because I had a sore inside my lip where I accidently bit it, he thought it could instead be viral, ie recurrent herpes. But I am on a prophylactic antiviral so that should not happen and I had no real "cold sore" looking lesions on my lip. So once again I seem to get the unusual results, see this excerpt from a medical article on vincristine-induced peripheral neuropathy:

Cranial neuropathy (including extraocular muscles, laryngeal neuropathy, and optic neuropathy) has been reported but is considered rare (Toker et al 2004).

Just like with getting febrile neutropenia despite Neulasta (see older post) only 1% of the time is that seen, based on clinical trial results. Dr.Porter was worried enough about these symptoms that he ordered a brain MRI to rule out lymphomatous meningitis. He doubted that but wanted to be sure and told me not to worry. Ordinarily I would run to my medical texts and online resources and look that up, but I decided this time why make myself crazy, why not wait until you hear the MRI results, which thankfully were negative...

My counts are good post-treatment except for the inevitable neutropenia even with Neulasta shot; at least this go-around I did not have a fever and have to be admitted for IV antibiotics. The node under my left jaw continues to remain small, so the lymphoma/transformation seems to be under control.  I love the patient portal they have at Penn Medicine, you can email your provider, check on appointment times and get your lab results, and it can graph the results over time. Below is a graph of my LDH (which is elevated in Richter's syndrome), showing how  it comes down nicely after treatment but after the last treatment it did go up to 300, normal range at Penn being 98-192. The general trend is down, though, and my highest value was in early March when it was 408.

I posted the following photo on Facebook this week to show how many pills I have to take, not unusual for someone with a chronic disease I guess. I need a lot of supportive medication, mostly for infection prevention.....here are my morning and evening weekly day-by-day pill boxes....I joke that what with the expensive monoclonal antibodies, I am singlehandedly supporting pharma. Some of these are generics thankfully but voriconazole is close to $1000 a month (but "only" $50 copay). I am so grateful to be able to continue to work and to have good health insurance...

A re-posting from another doctor closer to death than I

I found this of interest....possibly the last post from the cheerful oncologist

THE CHEERFUL ONCOLOGIST

“This Is My Last Day on Earth”

By Craig R. Hildreth, MD |May 2, 2013

Dr. Hildreth is a medical oncologist in private practice.

---

The past two and a half years have been such a bonfire of emotions for me. At the beginning, I never realized I would have to cope with such shifting and volatile contradictions: terror and courage, rage and tranquility, despair and hope. Thirty months ago, I was diagnosed with cancer. For 30 months, I have been living with cancer, but today I am dying of it. It has been an exhausting journey and now like a fire’s last embers, my spirit also dims. Before the day and I both go dark, however, I need closure on some things that have been on my mind. May I share them with you?

 

To my primary care physician: I know that it wouldn’t have made any difference in my case, but when patients come to you with complaints, and you attribute them to bronchitis or a muscle strain or some other common problem, make sure you follow up to see that they have recovered. Remember that cancer can be a great deceiver of doctors. Don’t assume that folks as healthy as me could never be stricken.

 

To my oncologist: You certainly were pleasant and compassionate. You also tended to minimize the gravity of the situation when my disease progressed. I know you’re not psychic, but when things are going badly, don’t be afraid to tell me you’re worried. You once said, “No one can tell you how long you have left to live,” but I know you could have ventured a fairly accurate guess. You chose to keep it to yourself, I guess to spare me the sorrow, but how do I prepare my family for my death if I’m not kept informed? Also, please don’t feel you have to keep offering treatment after treatment. It’s okay to say, “Enough."

To my insurance company: Your medical reviewer told my doctor that you are not in the business of practicing medicine, but then you denied payment for my Avastin, stating it was given two days before your regulations allow. You don’t know how much this upset my father. It is this type of nitpicking and rigidity that builds your reputation as a champion of mediocrity. I will remember you as a paltry and apathetic advocate of cancer care.

To all the nurses who took care of me: In the office, you were efficient and cheerful—you calmed me down, gave me a boost, and almost made me forget why I was there. In the hospital, I could tell you were stressed, but you never failed to attend to me—and you were sweet about doing tasks that I sure as heck could never do. As for my hospice nurses—you were a true blessing to me and my family, for which we will always be grateful.

To my loved ones: I am so sorry you had to go through this. Although I haven’t mentioned it, I am heartsick with the realization that once I’m gone my misery ends, but like the ancient myths, your grief lives forever.

Finally, to myself: You were not as strong as you professed to be, or as understanding. You lost track of your values, exasperated your family, and turned your back on some old friends, all just to spite yourself. You made the mistake of surrendering to the great seducer of the doomed—nothingness. In this void, no love could reach you, and you suffered all the more because of it. May you now find eternal peace.