Weeks 12 through 15: V+O procedure

Dear family, friends, and other leukemia patients:

I feel like I have been on a bit of a roller coaster ride the past month. I recovered from the weeks of intestinal issues with some of the best blood work I have had in over 15 years. I was managing what little fatigue I had and was walking. I got to enjoy my son’s PhD graduation with a celebration party. I felt like I was settling into a “new normal” that was manageable on 400 mg of venetoclax.

With the new iPhone app (Libre 3) that is tied to my glucose monitor, I am able to see in real time when my glucose level goes high or low. I was particularly interested in seeing what happens after I had my infusion, since my friend Addie said that her nephew Steven saw an increase in glucose levels when he took steroids during his leukemia treatment. She said after he stopped using steroids, his glucose level returned to normal and he was no longer pre-diabetic. She found an article in the AARP Bulletin from April 2024 discussing how a simple steroid injection can raise sugar levels. I am hoping that within months of stopping the steroids I can have a more normal glucose level. I do not want to be diabetic!

On Week 14 (04/23/24) I had my next-to-last Obinutuzumab infusion. Right after the two-bag steroid infusions, my glucose level rose from a little over 100 mg/dl to 275 mg/dl!

May 28th will be my last monoclonal infusion! I will still need to continue on the oral meds for two years to hopefully reach remission. This treatment is a marathon, not a sprint.

I graded all my university student finals. Those wonderful students keep my brain working. LOL. I drove myself to the infusion center and back, which I felt was quite an accomplishment. I was able to do that since I have done very well with infusions, and I do not get Benadryl with the treatment. My blood work was the best it has been in years (4.5k normal WBC, etc.).

The next week I had the highest white blood count (WBC) since the treatment began January 2nd(11.4k), which is slightly above normal. I was dealing with intestinal (lower left side) soreness and fatigue. Fatigue for cancer patients is unlike any other fatigue. It is all-consuming and your body has no choice but to shut down to heal. I would take a 5-hour afternoon nap, wake up for two hours and then sleep nine hours at night. I listen to my body. When my body says, “Sleep,” I sleep. I did not walk all week.

So, how am I feeling? Not completely myself, but I am managing. I believe I have a purpose and I am not done yet. We all make choices in our lives. We either get busy dying or we get busy living. I am getting busy living.

Dr. La Verne

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

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

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

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

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