I am Waiting for the Light

People say that I am “a tough bird,” “scrappy,” and “resilient.” If I seem unemotional at times, it is because pragmatism is my survival mode.

Everyone thinks I am fine because I have always had to be strong. I have always been the one with a good head on my shoulders. I have always pulled up my own big girl panties and dealt with the challenges in my life. I realize now I have passed my most difficult internal moments alone when everyone believed I was okay.

I have never been able to roll over and let someone else lead the way. I have never had that option. Perhaps the truth is that I have never allowed someone to lead the way because I have always believed I had to do it myself.

In today’s blog I will get real and share the other side of my cancer journey – the emotional side. Ever since I was diagnosed with high-risk chronic lymphocytic leukemia, I have not been able to have a fully engaging cryfest. I have wanted to cry, because I understand how therapeutic it is for your body and mind to get those tears out. At times I think I should watch the movie “The Notebook” again to release my emotions. I figured out that I must have difficulty crying because deep down I am afraid that if I start crying, I may not be able to stop. There are days when I feel like I have used up my quota of tears in my life, and there are no more to shed.

Being diagnosed with cancer is a grieving process. We are grieving about the life we no longer have. We are grieving about the unfairness of it all.

Clinical complete remission was a good place for me to be. I could go through my life not focusing on the cancer all the time. I could look at my life with fresh eyes and be grateful for all my blessings. I could really live.

Then the cancer progressed. Yes, as my blood brother George says, “It’s a bump in the road.” I got my shit together and got my plan in place for the next treatment. I was ready. I was ready for any side effects, since I have spent years in a Phase 2 trial which is all about side effects. I looked forward to getting ‘er done.

Then it happened. The 41-minute conversation I had with the pharmacist about the toxicity of the drug changed my perspective. I have been one of those people who tried to live a clean life. I never smoked. I never took drugs. I only drank a glass of red wine once in a blue moon. I always tried to live a healthy life. And there I was … coming to terms with the fact that I cannot put this cancer drug in my weekly pill box because it will contaminate the rest of my vitamins and medications. I must wash my hands before I take the pill and it is preferred that I dump the pill from the bottle to a paper cup before it goes in my mouth. I must wash my hands after I take the pill and God forbid that I accidently touch my eyes. What in the hell am I going to be putting in my body?!? And this is my best option, according to the experts. There are days I want to drive down Central Avenue with my car windows rolled up and scream at the top of my lungs!

Many of my blood sisters and blood brothers on this journey have been able to do well off cancer meds and not had to move on to another cancer treatment. Because I drew the Bingo card for high-risk CLL, that does not apply to me. And I started the whole grieving process again of “Why? Why me?”

I fully understand that the thoughts I play in my head affect my body. I get that. Sometimes I just must give myself grace and know that this is the journey I must take in my life. My life has purpose. I know I am not done with what I am supposed to be doing on this earth. I want to keep living, but I am also not afraid to die. When it is my time to die, I want to do it doing the things I love.

I suppose part of the frustration is that the movie of my life I play in my head is not the reality of what I must live with. I know others have it far worse than me, but for today I am going to allow myself to be the focus. I am allowing myself to have a pity party. Believe me, I do not want anyone else to pity me. I can do that very well all by myself.

Others tend to lean on me, but sometimes I am the one who needs a shoulder to lean on. I just need a little kindness right now. I sometimes ask myself why I feel like I reach out to others, value, and love them more than they do me. If I stopped reaching out, maybe I would be faced with the stillness of silence. Maybe that is okay.

I have always been the giver in life. Lately I have been asking myself “When is it my turn?” Maybe it will never be my turn and that’s just how life is. Maybe that is okay.

I am waiting for the light to shine on my life again. Today is just one of those days. But I am exhausted now, and a few tears are starting to fall. Tomorrow will be another day … God willing.

Dr. La Verne

The Shoe has Fallen!

I had a great run with Imbruvica (ibrutinib) – over 11 years. I was recently in San Diego at a marketing conference celebrating the 10-year anniversary of the FDA approval of the drug by blowing out the candles on a cake with the President of Pharmacyclics Erik von Borcke. We have known each other for years. That’s my 15 minutes of fame. My participation in the National Institutes of Health (NIH) clinical study helped ibrutinib become the frontline treatment for high-risk chronic lymphocytic leukemia (CLL) patients in the world.

Despite the long-lasting remissions using chemoimmunotherapy and oral cancer drugs, most CLL patients will relapse eventually. In April 2022, NIH found two markers indicating I was becoming resistant to the drug. It has taken my body a while to finally get to the point that I can say, “The shoe has fallen!” We thought it would happen in a few months.

I just returned from the day hospital of NIH. They verified that the cancer is advancing. It is in my underarms, collarbone, left jaw, left side of abdomen that they know of. I knew something was going on since I have been having a great deal of fatigue. I have good and not-so-good days. Sometimes I have to take a 4-hour nap.

Monoclonal antibodies, such as rituximab, have gained popularity in the past decade for CLL patients who have refractory or relapsed CLL. Gazyva (brand name/obinutuzumab (scientific name), is an updated CD20 antibody. It is thought to achieve a more durable response. With the advice of my medical team at NIH I have chosen obinutuzumab as a partner with Venclexta (brand name)/Venetoclax (scientific name) for my next treatment.

I will be on ibrutinib until I begin the new treatment. I will begin with Infusions of obinutuzumab on days 1-2-8-15. Then I will have monthly infusions for 6 cycles. Sometimes adjustments need to be made and it might take longer, if I get neutropenia. On Cycle 2 the venetoclax ramp up begins for five weeks. Once I am stabilized, I will be on venetoclax for two years. Hopefully I will be in remission by then and it will give me about five more years. Then I will have to find another treatment.

I am grateful this time I have an option. When I was first diagnosed in 2009 with high-risk CLL, I had no options.

This is my plan:

• Port

I am waiting for Chandler Medical Hospital to call me so I can schedule the surgery to have a port put in. It will have to be flushed every 4 to 6 weeks. I already had a blood-clotting procedure done.

• CT Scan

I am waiting for the paperwork to go through to SMIL Imaging so that I can schedule a CT scan from my neck down, so that I can see my tumor burden and the oncologist will have a baseline.

• When do the monoclonal antibody infusions start?

I asked the oncologist if it would be a detriment to my health if I was able to delay the infusions until January 2 so that I could spend Thanksgiving and Christmas with my family. The other concern with the delay is that I would like to get through this procedure so that I am well enough to travel to California for my daughter’s wedding, even if I must work around the infusion schedule. She said that would probably work.

As soon as the drugs are approved by the insurance company, I can schedule the infusion dates: 4X the first month. The administration begins on day 1, 2, 8, and 15. Then 1X per month for 6 months.

Obinutuzumab infusions are administered in the chemotherapy room of the doctor’s office in Cycles 1-6. The monoclonal antibodies infusions will take several hours to administer depending on where I am in the process.

If there is a problem and I get neutropenia, the procedure will be delayed. Neutropenia is when you have too few neutrophils, a type of white blood cells. It causes infections.

If I have a reaction, I may feel a fast heartbeat, tiredness, dizziness, headache, redness of the face, nausea, chills, fever, vomiting, diarrhea, rash, high blood pressure, low blood pressure, difficulty breathing, and chest discomfort. The procedure may have to be slowed down if I have a reaction.

• Venclexta (brand name)/Venetoclax (scientific name)

Venetoclax is taken from Cycle 3, Day 1, after the first 2 cycles of obinutuzumab. I will have a 5-week dose ramp-up to 400 mg. I will be going to the oncologist’s office to be monitored and checked for drug tolerance, and I will get blood work done every week.

The most common side effects for venetoclax during the ramp-up include myelosuppression ± infection, bleeding, diarrhea, nausea, vomiting, fatigue, musculoskeletal pain, cough, dyspnea, edema, abdominal pain, headache, rash and pruritus (itchiness).

• Prescription Insurance

My oncologist must get approval for the new drugs from the insurance company. Thank goodness I have additional prescription insurance. John C. Lincoln HonorHealth Specialty Pharmacy will work with me. I found out that Plan B should cover my infusions of obinutuzumab. I am crossing my fingers. The venetoclax drug will be mailed to me. I have a call going into my prescription insurance agent to figure out the out-of-pocket cost of the drug.

Take care. No worries. Remember that there is always someone else worse off than you, so count your blessings!

Dr. La Verne

How Ibrutinib Price Negotiations May affect You

Sep 27, 2023 Suzanne Mooney wrote an article about how ibrutinib (Imbruvica) price negotiations may affect the CLL cancer patient.

Ibrutinib (Imbruvica) is the only cancer drug of the 10 medications listed for price negotiations by the Inflation Reduction Act of 2022. If you are a CLL patient considering taking this cancer drug or if you are already on this drug, please go to this link to learn about the price of Imbruvica: https://www.patientpower.info/chronic-lymphocytic-leukemia/how-ibrutinib-price-negotiations-may-affect-you

Thank you Patient Power!

R.I.P. my mentor Dr. Chaya Venkat

Chaya is the reason I am still alive today. She was my mentor and helped me navigate through my high-risk CLL. She encouraged me to find a clinical trial since I had no options in 2009. When I was rejected from the trial, she encouraged me to read through the NIH grant and find a way that I qualified. She told me to put on my researcher’s hat. I found a way. I called them back and I was accepted. I had a chance to meet her in person when I was in the trial. I love her with all my heart.

https://updates.clltopics.net/5234-dr-chaya-r-venkat-1948-2023

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!