Week 2 Venetoclax Ramp-up to 50 mg

Week 1 on the Venetoclax ramp up of 20 mg had some minor ups and downs with fevers, night sweats, fatique, and a diminished appetite (which was a blessing since I lost six pounds in a month).

Monday 02/05/24 My bloodwork was taken the last day of Week 1. I had so many normal ranges! The big news is that my platelets are in the normal range! They squeaked by at 131 k/mm3 and the normal range is 130-450!

My RDW-SD is high. This means that the size of my red blood cells differs significantly in size from typical red blood cells. This shows that my body is having a little difficulty making red blood cells. Red blood cells transport oxygen from the lungs to your body.

I asked for a Hemoglobin A1C test for diabetes since my glucose levels had been high. The results are high. I made an appointment with my GP to look at the results and do something before I become diabetic.

After my bloodwork, I had a Living Well cancer support meeting and we all planned on going to lunch after the meeting. My friend Arlene took a fall right when we were walking across the street to the restaurant. She hit her head. 9-1-1 was called and she went to the emergency room. No broken bones. Just some stitches.

That night I woke up in night sweats and again at 4 a.m. on Tuesday morning.

Tuesday, Week 2 of the Venetoclax ramp up of 50 mg (more than double of Week 1) also included the “full Monty” of Obinutuzumab infusion on the same day. The Benadryl was not included with the two steroid doses, and Tylenol prep, so I was able to stay awake and grade half of my student’s essays while being infused. The process took several hours, and I did not need to nap. I had no issues. When I got home, I fixed a seven-layer salad and got my computer work done.

Wednesday morning, I woke up at 1:20 a.m. with night sweats, but nothing more. I went back to sleep, and when I woke up I had no cramps and my muscles felt good. No muscle pain.

Wednesday was a great day for me. I had an in-person meeting at the university and had no fatigue. In fact, I had no fatigue all this week!

Thursday 02/08/24 I woke up with night sweats again, but nothing more. This was a good week. I am ready for another blood test and Week 3 Venetoclax ramp up. I just might get through this.

Horizontal Week

02/03/24 Blog

My birthday keeps going on! Saturday Carl and I spent it with Tonya and her fiancé and four of our grandkids. We went to the dinosaur museum and Oregano’s Sunday. Best birthday ever! I enjoyed friendship time with my friend Sue C. My daughter has been bringing us so much food that Carl and I are going to look like little piglets!

Monday, January 29th I got bloodwork. My platelets are still low but holding, my WBC is in the low normal, but everything else was normal. This means that I had the best bloodwork that I have had in 15 years! I was off to a good start.

On Tuesday Dr. Robin determined that I could go ahead and take my first 20 mg dose of Venetoclax, which I did as soon as I got home.

Tuesday afternoon I was feeling weak and tired. So odd, since the week before I had no cramps and my muscles and joints were feeling great. By 6 pm my temperature was 100.9 degrees Fahrenheit. Remember that 100.4 is the tipping point according to the pharmacist. Dr. Robin gave me her personal cell number, so I texted her. She suggested I take two extra strength Tylenol. I did and my temperature dropped in an hour. She said she was not concerned because she knows my counts are good and my immune system is intact. She believed it was a reaction from the first medical dose.

When I woke up Wednesday morning, my temperature was 100.4, so again I texted her and told her I was taking two Tylenol. In 45 minutes, my temperature went down to 99.2. So now I know what to do.

I wish I could report that my week was good, but I look like crap and I have been horizontal and exhausted. It is sometimes hard for me to talk. It takes too much energy. I know that is a shocker to most people. I have continued to take a daily dose of the ramp up Venetoclax for Week 1.

The plan is that on Monday, Feb.5th I will have more bloodwork done to determine if I can go ahead with another full Monte infusion of Obinutuzumab on Tuesday. My Week 2 ramp up of Venetoclax is supposed to begin on Tuesday, Feb. 6th.

Did I tell you drugs are my life?

Dr. La Verne

Day 15: Obinutuzumab Infusion YES!

As you recall, my original Day 15 infusion on January 16th was cancelled because my platelets were too low, and Dr. Robin did not think it would be safe for me to have the infusion. So, Monday, January 22nd I went to the infusion room to get bloodwork done to see if my platelet count had improved and my challenged bone marrow had enough time to heal.

My platelet count increased from 89k/mm3 to 94k/mm3. That is low (normal is 130 to 450), but it shows that my bone marrow is healing.

My white blood count (WBC) was in the low normal range. It went from 5.6k to 4.1k, which is the lowest normal range. My Lymphocytes Absolute count went from 0.82 to normal. Last week the immature Grans Abs was high and that was an indication that my bone marrow was being suppressed and challenged. On Monday it was normal.

Last week my creatinine count was high and that was an indication that I was dehydrated. I was having severe cramps. My son Rocky sent me some hydration powder to add to my water that he and Liz use. They are both athletes and he said it had less sugar than Gatorade. It is Ultima Replenisher. It is an electrolyte mix. The blue raspberry flavor is wonderful. It makes it easy to drink water. No cramping since I have been using Ultima. I add Feel Good Beetroot Powder to my second thermos of water. It was all ordered from Amazon. Goal is 10 cups of water a day. My creatinine count is normal now.

So Tuesday, January 23rd became my new Day 15 Obinutuzumab Infusion Day. I am a week behind. I got the go ahead. I had half the amount of Benadryl, but I still managed to take a three-hour nap. I did not sleep well Monday night and got up at 2:30 a.m. on Tuesday, so I did not need Benadryl at all to shoot the “Z’s.” I got the steroids, which I hate because it makes me gain weight and I am already fat and sassy enough! I got the full Monte of the Obinutuzumab with no serious side effects.

The infusion did make me a little foggy in the brain, so it has taken me twice as long to do any of my computer work this week. This probably was not the best week for this to happen since I am taking a required ASU faculty online class this week and next. My colleague Eva knows what is going on and has my back if I need help with the course I am teaching. Just knowing she is there seems to help a lot.

Carl got me an early birthday present – an Apple watch. I have it programmed for steps, standing, and exercise goals. I did walk one mile on Monday, Tuesday, and Wednesday. It felt good.

The best medicine of all this week has been visits from my girlfriends Addie, Tina, Robbie and Claudia and my daughter Tonya. The visits came along with food and gift cards. Giving someone your time is the best gift of all.

I talked to my friend Sue and she shared pics of her puppy BooBoo. I communicated with the wonderful women in my Living Well cancer support group. Yvonne and her sister Laura sent me a birthday card and gift card. I have such thoughtful friends. That is what life is all about – the relationships you have with people.

Next week I hope to start the oral cancer med Venetoclax, if my bloodwork checks out. My goal is to be far along in this cancer treatment to enjoy my daughter Tonya’s wedding to Flint in June and my son Rocky’s Ph.D. graduation in May. One day at a time.

Dr. La Verne

P.S. I am not proofing this blog since I am now getting tired. Imperfection is one of my best qualities. LOL.

Day 15: Obinutuzumab CANCELLED

The three days after my Tuesday, January 9th infusion went well. I managed to get in a one-mile walk in and spend some time with my cousin on his birthday on Friday. Saturday during the day, I slept all day, periodically waking up to drink some water and eat something. I just listen to my body. If it says sleep, I sleep. I slept all night Saturday night. Sunday and Monday I did okay. I was able to get out of the house for a short time.

Tuesday, January 16th was supposed to me my next “Full Monte” dose of Obinutuzumab. I saw Dr. Robin before my infusion. She said that the blood draw from last week showed that my platelets and protein are low. I have never had a problem with my platelets ever.

My white blood count (WBC) from last week was finally in the normal range (5.6) and my Lymphocytes Absolute count was 0.82. My glucose level was high, but I was not fasting, so she didn’t seem overly concerned about that. My creatinine count was high and that was an indication that I was dehydrated. My RDW-SD count was high, but that was expected during the treatment. The immature Grans Abs was high and that is an indication that my bone marrow is being suppressed and challenged.

She wanted to do another blood draw before the infusion. The new blood draw from Day 15 showed that my platelet count is even lower than it was last week. My bone marrow is being challenged and has not had enough time to heal. Dr. Robin wanted to be safe with the treatment and she believed it was best to give me fluids, up my allopurinol for uric acid to 300 per day, rather than 100 three times per week. My Obinutuzumab treatment was cancelled today.

Next Monday I will get bloodwork done and my next infusion, hopefully, on January 23rd. My oral cancer meds will not happen next week. It will be the week after.

I have her personal cell phone number if I have any issues. She did not want me to be disappointed that we are moving forward with a little stop along the way. I am fine with it. I would rather be safe. I am still here and kickin’ so that is good.

Dr. La Verne

Day 8: Obinutuzumab treatment (Tuesday, 01/09/2024) through Day 10

I rested for a couple hours after my Day 8 treatment (Tuesday) and went to sleep at 8 p.m. Carl has a hard time sleeping without me, so I went to bed early. I had no nausea, no intestinal issues, no joint issues, and just a few hand cramps. The expanded lymph node under my jaw and chin is gone and I do not look like I have the mumps anymore. I feel really good about this. I go back next Tuesday for the next “Full Monte” Obinutuzumab treatment.

Well, the steroids are working. I woke up at 2 a.m. bright and bushy-tailed on Wednesday, graded all my students’ assignments, answered all my student emails, and revised a student resumé by 4:30 a.m. when my husband Carl woke up for coffee and his 2-hour gym workout (crazy man).

At 5:30 a.m. Carl left to go to the gym and I decided I better take a nap, since I have a dental appointment and I want to have enough energy to go on a short walk with my neighbor Linda at 4 p.m. I did not nap. By the time I looked up from my computer it was almost noon.

My friend Robbie brought some hearty food for us, which we are eating tonight (Thursday). Barry and Jodee sent us some soups, biscuits and cookies. The Mac and 3-cheese soup called my name. I am so thankful for all the sweet thoughts and texts. It is making my recovery so much better.

I had Pho for lunch/dinner yesterday and Carl has Tai food so I don’t have to cook again. Thank you Liz and Rocky. I love to cook, but not when I am fatigued. I think I may just get used to all this love. It is certainly helping my mental state.

My blood brother George, who started the same day as I did at NIH (National Institutes of Health) is no longer in the trial because of Afib issues with his heart. He had to have an IVIG infusion last Friday and his respiratory issues have improved. Now he is shoveling snow in Massachusetts.

I start Venetoclax on January 23, 2024. I remember getting mouth blisters the first time I took an oral cancer drug years ago. Dr. Robin’s nurse Becky suggested I rinse my mouth with baking soda and water to neutralize the area to prevent that from happening again.

I walked yesterday with my neighbor Linda for one mile. Three-fourths of the way into it, I got leg cramps in my calves, and I had to use her arm to finish the mile. Before my treatment, Linda and I were walking 3.5 miles three times a week. I am just happy I can do one mile more often. Note to self: Bring water on my walks. Drink more water during the day.

Last night I went to sleep at 9 p.m. I watched “The Holiday” movie. I finally had a good cry. I don’t cry easily so this was a good thing. I woke up at 5 a.m. and had coffee with Carl. This will be another good day.

I am rambling now.

Dr. La Verne

Day 8: Obinutuzumab (01/9/2024)

Last night I slept well. Today is Day 8 of my Obinutuzumab infusion. I took another 3-hour nap during the treatment. I had the full Monte this time and I have done well. No side effects so far except the fatigue.

My oncologist Dr. Robin said that my two days of activity after the initial two treatments was probably because of the steroids. Then my two horizontal days were because I overdid my activity. I need to strike a balance here. LOL.

I will tell you that my ASU students inspire me. I love hearing about their outlook for the future. I have such faith that these human beings will make our world better.

I am grateful that I moved my courses online. I would not have the energy to drive around town and hunt for a parking space at the university. I save my energy for my students and their success.

I came home to a wonderful dinner cooked by a chef from Sally and Bill. I will tell you that not having to exert the energy to cook has been a real blessing, since fatigue seems to be my downfall. I listen to my body. When it is tired, I rest. So I am resting now.

With gratuity,

Dr. La Verne

Day 7: Obinutuzumab infusions

Days 3 and 4 after two treatments of Obinutuzumab were good days. I felt alert and even walked a mile each day.

Days 5 and 6 (Saturday and Sunday) were horizontal days. I also had a headache. I slept most of the day on Day 5. I guess my body needed it. I went to sleep at 6 p.m. on Day 5 and slept until midnight. I got up to get a glass of water and went back to sleep until 4:30 a.m. Then I had my coffee and went back to sleep for two more hours. My body has been getting rid of a lot of fluid. I am keeping hydrated.

I was delighted when I received a soup package from Lucy. The tomato basil soup felt good going down my throat. My daughter Tonya made homemade egg rolls. I put on a pot of rice and that was all I had to do for dinner. Not having to cook is a real help to me.

Today is Day 7. I had a little dizziness when I first woke up, but I feel better. My temperature is a little elevated today, but within range. I am supposed to go to the hospital if my temperature reaches 100.4.

Tomorrow is my next infusion. Today will be a good day. I am happy that I have been able to stay away from some of the worst side effects.

Dr. La Verne