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

Day 2: New Treatment (01-03-2024)

Yesterday before I had my first treatment, I managed to grow a huge honking 2-inch lymph node under the left side of my jaw in seven days. It looked like I had the mumps! I stopped taking Imbruvica on Dec. 26th. By this morning it was half the size. The infusions must have made a difference.

I do recommend having a port put in. It makes the infusion process and the blood draw process so much easier. I recommend applying a big blob of prescribed Lidocaine and Prilocaine cream and cover it with Saran wrap one hour before the treatment. The Saran wrap is to protect your clothing. I would also suggest that the nurse spray the anesthetic spray on the port as well. That way I did not feel the prick.

Yesterday I was prepared for a night of nausea, since I am prone to that. Carl put a bucket by my bed. I also had my other prescriptions. Well, I had no issues all night and woke up feeling fine. I do have a bit of a steroid face, but I have a round face anyway, so it did not bother me.

We checked into Day 2 at 8 a.m. and I was on my way home before 2 p.m. I brought a book to read. I started out with Tylenol pills and an infusion of steroids and Benedryl. Then I was given a ramped up 900 mg of Obinutuzumab (9 times more than yesterday). By 10 a.m. the Benedryl kicked in and I took a nap. The nurse woke me up after three hours and told me I would be unhooked in 30 minutes. My infusion neighbor told me that I did not snore. LOL. I could have slept longer. Carl was running errands and came back to pick me up and that was that. I feel well rested.

On our way out we saw Dr. Robin Obenchain, my oncologist. She is such a caring person. I got a big hug from her and told her that so far, my talent of napping was coming in handy. We laughed.

I had a visit from my daughter Tonya and that was good medicine for me. So let’s see how tonight goes. So far so good. The force is with me.

Love & Gratitude, Dr. La Verne

Day 1 of new treatment (01-02-2024)

Happy New Year! Today was the first day of my new treatment. I originally thought my husband Carl and I would be in the infusion room for three hours. We checked in at 8 a.m. and I was unhooked from the infusion at 2:51 pm – almost seven hours later.

The first two hours was used to prevent side effects from the Obinutuzumab by administering Tylenol, steroids, and Benadryl. I then received GAZYVA (Obinutuzumab) 100 mg in sodium chloride 0.9% 104mL/IVPB 100 mg bag. I am thankful I got a port because I cannot see how this would work with my crooked veins.

Lonnie, a cancer survivor from my Living Well cancer support group, came to chat with me. The Benadryl was making me sleepy so after she left, I did one of my best talents – I took a 3-hour nap. The nurse kept checking up on me making sure I was okay. I was listening to an Audible book, but I can’t even tell you what that was about since I slept so deeply.

I am now home and was told to take my temperature every day. Anything over 100.4 degrees is cause for concern. I got through the first infusion of Obinutuzumab with no initial side effects. I need to look out for fever, cough, or muscle and joint pain. The nurse said that tonight I may have side effects, such as diarrhea, nausea and vomiting, mouth sores, shortness of breath, rapid heart rate, problems with balance or coordination, problems with speech or walking, fainting, and headache.

Obinutuzumab, just like Rutuximab, may cause a serious viral infection of the brain that can lead to disability or death. I know they have to tell every patient this. She warned us that if I start to have any change in my mental state, decreased vision, or problems with speech or walking that start out gradually and get worse quickly, don’t bother calling the nurse, just go to emergency immediately.

The nurse gave me prescriptions for the side effects.

I got a text saying that our dinner will be delivered at 4:30 pm today. Thank you, Liz and Rocky. That was the best news of all. I do not have to have Chef Carl cook me dinner. I got Pita Jungle!

I will keep you updated on how everything goes tonight. Until then, be grateful.