Tuesday, April 16, 2024

Ramping Venetoclax up and intestinal issues (Weeks 7, 8, 9, 10, 11)

Dear friends and family:

I have good news and not-so-good news that eventually turned into good news. My blood work the past several weeks has been heading in the right direction. The side effects I have had have not been so pleasant. I have had intestinal issues for weeks – not every day, but enough to affect my quality of life.

Weeks 7: March 12 to March 18

I began my 300 mg ramp up on Week 7 (March 12th). Several things stood out this week:

• the unpleasant smell of saline when my port is being flushed out

• the nausea feeling I get when having to swallow 16 pills. I am working to get rid of taking so many. It about gags me. Before cancer I barely took an aspirin. I have had to take several pills at a time with a break in between.

• By the end of this week I had a 1-1.5 inch lymph node on the left side under my jaw. By Sunday morning (overnight) it reduced to one-third the size.

• Sunday I had fatigue and took a 2-hour morning nap and a 4-hour afternoon nap. I slept through the night and felt good when I woke up.

Week 8: March 19 to March 25

Week 8 I began my 400 mg ramp-up. This week I had intestinal issues (lower intestinal pain, vomiting, diarrhea, constipation, and fatigue. We are not sure if this is caused by the Venetoclax or the Metformin drug.

Week 9: March 26 to April 1

Week 9 I continued with 400 mg venetoclax. I continued to have intestinal issues and lower intestinal pain. I had to go to the infusion center to get hydrated. The numbness in my toes appears to be going away. The UTI test was negative.

Week 10: April 2

The 400 mg venetoclax regime continued. I had an infusion of the monoclonal antibody on Week 10 April 2, 2024 with no benedryl. The good thing about the steroids is that I have so much energy that lasts for days. I continued to have lower abdominal pain, however.

Week 11: April 9

I maintained the 400 mg venetoclax regime. I continued to have lower abdominal pain. I stopped using the Metformin drug temporarily.

I researched articles on lower abdominal pain. I found several articles and clinical trials where Coca Cola products were used to eliminate intestinal issues. NIH specifically used Coca Cola Zero in one of their studies.

By Thursday, April 11, I thought I might have to go to the hospital because the pain was getting unmanageable for me. My daughter Tonya bought me a pack of Coca Cola Zero. I usually do not drink pop, but it was for “medicinal purposes.” LOL. Within 10 minutes I could feel some relief from the pain. I drank another one and the pain was completely gone by Friday morning. My intestinal tract is now in working order. Now we have to figure out if the intestinal issues were caused by the Metformin drug or venetoclax. In any case, there will always be a few cans of Coca Cola Zero in my refrigerator.

Dr. La Verne

Saturday, March 16, 2024

Week 7 Venetoclax: Ramping it up to 300 mg

Dear friends, family, and anyone else out there who wants to know what is going on:

Week 6 to Week 7 I have had a little fatigue and lots of foggy brain, but I worked through it. I listened to my body and slept and rested.

Week 7 I am on a ramp up of 300 mg and I started to take my diabetes medicine. If it causes too much indigestion issues, Dr. Robin said I could take it every other day. I only had a problem the first day I took it.

On Wednesday, March 13th, the second day of Week 7, I woke up with a clear head. The grogginess was gone. It felt so good.

My swelling and redness in my right leg is gone. My calves do look like I have been the survivor of a bar fight. As my future son-in-law Flint would say, “You should have seen the other guy!”

I will have another ultrasound in three months to see the status of my non-occlusive blood clot. Non-occlusive means that there is blood flow around the clot. Then I will have another ultrasound in six months to see if it is gone. In the meantime, I will continue to walk every day, stretch, wear compression socks, and elevate my leg. No marathons for me. LOL. I will also be tested to see if I have a genetic disposition for blood clots.

I will continue to use Eliquis for six months. The drug thins my blood and keeps me safe from an embolism.

I saved the best for last. My bloodwork! My white blood count is 7.7 k/mm3 (normal is 4.0-11.0 k/mm3). My red blood count is 4.05 (normal is 3.70-5.40 m/mm3). My hemoglobin is 13.3 (normal is 11.5-16.0 g/dL). The only readings that are high are the ones that should be high because my body is getting rid of cancer cells. Hurrah! I am headed in the right direction.

P.S.- Thank you, Addie!

Dr. La Verne

Saturday, March 9, 2024

Week 4, 5, and 6 Venetoclax

Dear friends and family:

Week 4

Many of you have probably been wondering why I have not checked into my blog for a few weeks. Week 4 Venetoclax ramp up with 200 mg went well. No significant side effects. There was nothing to report.

Week 5

Week 5 Venetoclax ramp up with 400 mg was another story. I had fatigue, brain fog, bruising, and hip and elbow joint issues. My two big toes and the toe next to them often went numb or tingly.

I began to get a blister rash on my right ankle and upper shin. Dr. Robin suspected shingles and I was prescribed Valtrex starting Week 6.

Both ankles showed swelling. The right ankle area was red and warm and the top of my right foot was puffy like a balloon. Dr. Robin suspected a blood clot. She was correct. I ended up with a blood clot in the back of my right knee. Rather than send me to the Emergency Room (She knew I wouldn’t like that), she sent me home with a blood thinner (Eliquis 5 mg) to help thin my blood and dissolve the clot. Blood clots put you at risk for pulmonary embolism, a stroke, heart attack, and kidney problems. I certainly don’t need that in my life!

In spite of all the side effects, my blood work was the best it had been since the treatment began. My glucose level was even in the normal range. I have not started on the diabetes medication and FreeStyle Libre 3 (a glucose system), because we want to separate the side effects of the drugs.

Week 6 (beginning Tuesday, March 5th)

Week 6 of the Venetoclax ramp up was reduced to 200 mg instead of 400 mg. The plan is that Week 7 will be 300 mg and then Week 8 will be 400 mg to see if the slower ramp up will help my body adjust to tolerating the cancer drug.

The good news is that I was able to have my Obinutuzumab infusion for the month with two steroids, and my blood work was good. That means I will finish the infusion part of the treatment in June just in time to fly to California to see my daughter get married to the boy next door.

SIDE NOTE: I met a lovely woman in the infusion room and she may be coming to my cancer support group Living Well. We decided to name the support group “Living Well” instead of “NDY” (Not Dead Yet). LOL.

03//06/24 I had some slightly loose bowels. I am sure that is TMI for many of you. LOL. I have been elevating my right leg and the swelling has been coming down. My legs are still tender to the touch.

As of this morning I have noticed that the swelling in my legs has gone down and my calves are less tender. I will get more blood work on Monday. Thank God that I decided to get a port! I will meet with Dr. Robin on Tuesday of Week 7 and see where I am.

I am hanging in there. I have been resting and saying, “No,” to people. I have to focus on getting better. Learning to be a little selfish has been a bit of a struggle for me. There are times when I need to check out and be alone and veg out. Do not be offended. I am not ignoring you. I just like to be alone with my thoughts to heal.

Dr. La Verne

Wednesday, February 21, 2024

Week 3 Venetoclax Ramp up

Week 3 Venetoclax ramp up to 100 mg was fairly uneventful. I did have one bout of intestinal issues on Sunday. I am not sure if that was from the prune juice I drank Saturday evening or from the fact that I ate an entire steak for the first time in over a decade. In any case, I was fine on Monday.

My bloodwork showed that my white blood cell count is in the normal range (4.9 k/mm3) and my platelets are in the normal range. My uric acid is in the normal range. I am relieved about those numbers.

My red blood count (RBC) is low (3.41 m/mm3), however. The normal range is 3.70-5.40. January 8, 2024 it was 4.63 m/mm3, which is in the normal range. It has been dipping since February12th, which is the day before I started on the 100 mg ramp up. I need to get a regular supply of iron, as well as folate, protein, and vitamin B12 so that I do not become anemic. I made sure I got a B12 shot at the doctor’s office.

Here are some lows: My hemoglobin is low (10.8 g/dL). The normal range is 11.5-16.0. It has been dipping since February12th. My total protein is a little low (5.8 g/dL). The normal range is 6.0-7.7. The total Globulin is low (1.5 g/dL). The normal range is 1.7-3.3. My MCHC is low.

Here are some highs: A/G ratio is high (3.0). The normal range is 1.3-2.7. My MCV is high. My RDW-CV is high and has been climbing. Some of these low and high numbers are due to the ramp up of the cancer drug.

Dr. Fiel, my G.P. discussed the A1C test with me since my glucose was very high. He said that since 1997 I have not had an issue with my glucose even if I test when I am not fasting. The last time he tested me in 2022 my glucose was normal. Whatever is going on has happened within the last year and a half.

I have a proactive diabetes plan with my Dr. Fiel. My father controlled his diabetes through diet alone for 20 years. Dr. Fiel said if I was not dealing with my cancer issue, he would recommend this, but not in my situation today. I have a low-dose prescription for Metformin, but Dr. Robin wants me to wait until I ramp up to 400 mg of Venetoclax (Week 5), so that the side effects of the cancer drug don’t get confused with the side effect of the diabetes med.

I will also have a FreeStyle Libre 3 on the back of my upper arm. The glucose monitoring system will give me glucose readings on my iphone. The data will be forwarded to Dr. Fiel’s office 24 hours a day. That way I can be monitored and I can’t cheat! I have a dietary plan and exercise plan in place. I am ready.

I just started Week 4 with 200 mg. Dr. Robin ordered the 400 mg of Venetoclax for Week 5, since my body seems to be tolerating the drug. I am very mindful of drinking water. That is the most important thing to remember. I am a little leery of the 400 mg ramp up since many patients I network with have not been able to tolerate that amount.

I am now down to monthly Obinutuzumab infusions. I should be done with those right before we leave to go to our daughter’s wedding. Great timing.

The word for the day: resilience.

Dr. La Verne

Friday, February 9, 2024

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.

Saturday, February 3, 2024

Horizontal Week

02/03/24 Blog

My birthday keeps going on! Saturday Carl and I spent it with Tonya and her fiancĂ© 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

Thursday, January 25, 2024

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.

Tuesday, January 16, 2024

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

Thursday, January 11, 2024

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 resumĂ© 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

Tuesday, January 9, 2024

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

Monday, January 8, 2024

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

Wednesday, January 3, 2024

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

Tuesday, January 2, 2024

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.