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