Holding Pattern

I am in a holding pattern.

hold·ing pat·tern

/ˈhōldiNG ˈpadərn/

noun

1. the flight path maintained by an aircraft awaiting permission to land.

Every person has the potential for a cancer cell to form in his/her body. Mine was not familial. It was environmental – much like the Viet Nam vets who were exposed to Agent Orange.

Well, the Dragon and I recently had a heart-to-heart talk since he reared his ugly head again. I am a cancer survivor and I have gone on with the business of living. The Dragon has been sleeping for a decade. He is stirring and waking up again.

I still have work to be done on this Earth. There are loved ones who depend on me being here. The Dragon does not show any empathy.

I have come to the conclusion that I am not the Dragon Slayer. I am more of the Dragon Tamer. Some have even called me the Dragon Lady. So, I had a conversation with the Dragon Slayer – Dr. Adrian Wiestner. I am making my next survival plan. Dr. Adrian Wiestner called me when I flew back to Arizona from NIH and we chatted on the phone about the strategy and options ahead of me.

Dr. Wiestner recommended continuing to take ibrutinib while scaling up for five weeks on venetoclax, when the time comes. Then after the ramp-up, the local oncologist will add infusions such as rutuimab or obintuzumab or another kinase inhibitor, such as acalabrutinib.

I am in a “holding pattern.” I cannot stay and hover here forever, because sooner or later I am going to have to land. Until then, I am going to enjoy the scenery.

Dr. La Verne

I got Covid

Mid-July and mid-August I have stabilized as far as my white-blood count, hemoglobin and platelet count are concerned, even though there is evidence that I am becoming resistant to Ibrutinib. I will be having another blood test in mid-September, so we will see what happens.

On another note, the fear in the medical community is cancer patients like me getting Covid. My husband Carl woke up with a serious headache, foggy brain, nausea, extreme fatigue, and body aches. We tested him for Covid and he was positive. He threw up for five days and was miserable. His severe headache lasted a few days and then became milder. His foggy brain lasted 10 days.

This is a man who works out every day doing cardio and weights. He had been vaccinated and had a booster. After two weeks he still tested positive even though he felt better. We slept in separate rooms, used separate bathrooms, and wore masks in the house. I knew it was a matter of time before I tested positive.

I tested negative for the first two days Carl tested positive. Then on the third test, I tested positive. I had barely a headache for a little over a day, and for two days I had a low-grade fever (99 degrees). I had more fatigue than I usually have. My taste and smell were not affected.

NIH suggested a prescription of paxlovid, an anti-viral medicine, which both of us were prescribed. Carl began taking paxlovid the third day he was symptomatic. I took it the first day I tested positive and I believe that helped me from getting a more serious case. The anti-viral medicine is taken for five days in a row (two times a day). Carl reported a terrible and bitter taste in his mouth the first day he took paxlovid. It tasted like metal to him. He has really good taste buds and smelling skills. I do not. I barely could taste the paxlovid the second day, and then it didn’t bother me anymore.

Today is Carl’s second day of testing negative. I have tested negative for the past six days. I really don’t understand why I am the immune-compromised person, yet I got a mild case. My oncologist said that there is still so much we don’t know about Covid and why it affects people differently.

The Dragon is Rearing Its Ugly Head

Before I was diagnosed with cancer, I thought that when someone was in remission it meant that the cancer was gone. Little did I know that it means the cancer is being held back and not progressing. I have been on ibrutinib (IMBRUVICA® brand name) for a decade and have had a good run of it. I began taking the experimental oral cancer drug July 12, 2012. By January 15, 2015, I was declared to be in clinical complete remission. It was not until April 15, 2022, that the National Institutes of Health (NIH) medical team thought that I may be developing resistance against ibrutinib.

I recently returned from a meeting with my NIH medical team. The good news is that my lymphocyte doubling time has slowed down and my body is stabilizing. They will be focusing on my platelet and hemoglobin counts when I get blood work done.

After a full body scan and numerous blood tests, they determined that I had developed two mutations in my blood – a BTK mutation, which is indicative of ibrutinib resistance, and a BCL2 mutation, which are associated with increased risk of transformation and shortened survival.

SIGNS THAT THE CANCER IS DOUBLING

I need to be mindful of my body. If I see changes such as unintentional weight loss, fatigue, pain, night sweats or fevers, I am supposed to contact them right away. I mentioned to them that pain is relative. I had two babies a ’la natural with no drugs. They said I would know.

THE NEXT CANCER TREATMENT

I have made the decision to follow the advice of the NIH medical team who has kept me alive for the past decade. I selected venetoclax as my next treatment.

There are still some slots left in the 5-week venetoclax (VENCLEXTA® brand name) ramp-up at NIH. The 5-week ramp-up is a clinical trial where the NIH medical team carefully monitors the patient for half a day in the hospital for a period of five weeks and slowly the venetoclax drug is slowly ramped up. The reason that it is slowly ramped up is because if the drug does its job too well and gets rid of too many white blood cells at too fast of a pace, it causes tumor lysis syndrome, which causes death.

Whether I will be one of the ones in the trial remains to be seen. The medical team is advising that I have rituximab infusions for six months, along with venetoclax. I don’t have the details of when that would be given to me. I am dealing with one thing at a time. Provided all goes well in the 5-week ramp up, I will hopefully only have to take venetoclax for two years before my next remission. I am counting on this!

THE COST OF THE CANCER DRUGS

You would think that dealing with cancer was enough of a challenge for a person but dealing with the cost of an FDA-approved drug is another challenge. Because of the way the laws in our country are written, an oral cancer drug does not have the same medical coverage as a cancer drug given intravenously. It is not covered by Medicare. The FDA-approved drug venetoclax costs $170,000 a year. I have prescription insurance, but it is not fully covered. It is still a hardship for most average Americans.

I have been to DC with a team of experts (medical doctors and the president of the Leukemia & Lymphoma Society) to meet with our Congressmen and Congresswomen about five times in the past decade to discuss this antiquated law that was written before oral cancer drugs were invented. We have told them that cancer drugs are cancer drugs whether they are given through the veins or through the mouth. I have told several senators and representatives my story. They appear empathetic yet noting gets done in Congress. It is beyond infuriating.

Well, the Dragon and I have had to have a heart-to-heart meeting. I will tell you of our conversation in my next blog. For right now, consider me in limbo, but doing fine. I am going about with my life and enjoying every second of it!

80 percent of Evusheld doses are unused because no one knows about this drug

The New York Times "The Morning" (March 28, 2022)addressed the issue of the immunocompromised, who have ineffective protection with Covid-19 protection. There is a drug called Evusheld, developed by AstraZeneca, but no one seems to know about it. I blogged about it right after I received my two injections. It provides months of protection. 850,000 people could get added protection but about 80 percent of the doses are sitting in hospitals, warehouses, and pharmacies unused.

Why is this happening? It is because no one knows about it. Or no one knows who qualifies.

We need a plan, people!

Immunocompromised? Need protection against Covid-19?

You would think that I would have lots of protection against Covid-19. I have not only had the vaccine, but two boosters. Still my antibodies have been 366 at the highest with the range being zero to a little over two thousand.

I decided to seek other options to protect myself. I found out about Evusheld from one of my cancer groups. Evusheld is a combination of two monoclonal antibodies (tixagevimab and cilgavimab) injected one in each hip/buttocks to protect the immunocompromised patient from Covid-19. The medications are lab-made proteins that act like antibodies to fight infections.

Not every person is qualified to get the injections. First of all, you need to have a medical condition or have not developed a strong enough response to the Covid-19 vaccine. You have to be at least 12 years old and weigh at least 88 pounds. You cannot be currently infected with SARS-CoV-2 and have not had close contact with an infected person.

The medicine needs to be prescribed by your physician. It is not an FDA-approved medicine in the United Stated; however, the FDA has issued an Emergency Use Authorization (EUA).

The entire process lasts 90 minutes. After the two injections, the remainder of the time is spent observing your response. I did not have any issues with the injections, nor did I have any side effects.

The injections do not increase your antibodies. What happens is that your cells are neutralized with a “shield” so that the virus cannot attach itself.

PLEASE READ THIS UPDATE:

The information I posted came from the nurse who injected the Evusheld in me.

Beth's comments are worth reading:

Beth has left a new comment on your post "Immunocompromised? Need protection against Covid-19?":

I always enjoy your posts, but think that in your most resent post that you have misrepresented Evusheld. The monoclonals that comprise Evusheld are anti-spike antibodies, binding only to the spike protein of the virus. Your cells are not neutralized with a shield so that the virus cannot attach. Evusheld antibodies do not bind to your cells. That would be the case with anti-ACE2 antibodies, which would coat the cell prohibiting spike attachment, but that is not how Evusheld works. Tixagevimab and cilgavimab bind to the spike, preventing the virus from binding to the ACE2 protein on the cell surface.

Also, I do not think that there is any weight limitation for adults. According to my reading of the Evusheld Fact Sheet, the 88 lb cutoff applies to adolescents. https://www.fda.gov/media/154701/download

One other comment that is a bit misleading is that the range of antibody production post-vaccination is “zero to a little over two thousand”. The >2500 is simply the cut-off for what is reported by Labcorp. In healthy individuals the actual antibody titer is frequently 10+ times higher than the reported cut-off level.