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