tag:blogger.com,1999:blog-43230543536061255292024-03-24T00:37:46.138-07:00Dr. La Verne's Awesome AdventureTaming the Leukemia DragonDr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.comBlogger130125tag:blogger.com,1999:blog-4323054353606125529.post-17565052415140544122024-03-16T08:39:00.000-07:002024-03-16T08:39:54.070-07:00Week 7 Venetoclax: Ramping it up to 300 mg <p>Dear friends, family, and anyone else out there who wants to know what is going on:</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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!”</p>
<p>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.</p>
<p>I will continue to use Eliquis for six months. The drug thins my blood and keeps me safe from an embolism.</p>
<p>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>
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<p>P.S.- Thank you, Addie!</p>
<p>Dr. La Verne</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-18967091612176855652024-03-09T07:53:00.000-07:002024-03-09T07:53:28.433-07:00Week 4, 5, and 6 Venetoclax<p>Dear friends and family:</p>
<p><b>Week 4</b></p>
<p>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.</p>
<p><b>Week 5</b></p>
<p>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.</p>
<p>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.</p>
<p>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!</p>
<p>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.</p>
<p><b>Week 6</b> (beginning Tuesday, March 5th)</p>
<p>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.</p>
<p>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.</p>
<p><i>SIDE NOTE:</i> 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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>Dr. La Verne</p>Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-18300403542924868582024-02-21T11:27:00.000-07:002024-02-21T11:27:06.495-07:00Week 3 Venetoclax Ramp up<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>The word for the day: <b>resilience</b>.</p>
<p>Dr. La Verne</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-19202680067091866242024-02-09T09:35:00.000-07:002024-02-09T09:35:12.054-07:00Week 2 Venetoclax Ramp-up to 50 mg<p>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).</p>
<p>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!</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>That night I woke up in night sweats and again at 4 a.m. on Tuesday morning.</p>
<p>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.</p>
<p>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.</p>
<p>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!</p>
<p>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.</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-36800156622218110882024-02-03T17:38:00.000-07:002024-02-03T17:38:45.645-07:00Horizontal Week<p>02/03/24 Blog</p>
<p>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!</p>
<p>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.</p>
<p>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. </p>
<p>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.</p>
<p>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.</p>
<p>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. </p>
<p>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.</p>
<p>Did I tell you drugs are my life?</p>
<p>Dr. La Verne</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-90450729037593105842024-01-25T17:58:00.000-07:002024-01-25T17:58:17.136-07:00Day 15: Obinutuzumab Infusion YES!<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>Dr. La Verne</p>
<p>P.S. I am not proofing this blog since I am now getting tired. Imperfection is one of my best qualities. LOL.</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-90204696683115039882024-01-16T14:11:00.000-07:002024-01-16T14:11:45.841-07:00Day 15: Obinutuzumab CANCELLED
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>Dr. La Verne</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-76571239427759745092024-01-11T10:06:00.000-07:002024-01-11T10:06:01.658-07:00Day 8: Obinutuzumab treatment (Tuesday, 01/09/2024) through Day 10<p>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.</p>
<p>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).</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>I am rambling now. </p>
<p>Dr. La Verne</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-63235589915228675852024-01-09T15:54:00.001-07:002024-01-09T15:54:58.783-07:00Day 8: Obinutuzumab (01/9/2024)<p>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.</p>
<p>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.</p>
<p>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. </p>
<p>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.</p>
<p>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.</p>
<p>With gratuity,</p>
<p>Dr. La Verne</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-28857791553945711942024-01-08T07:49:00.004-07:002024-01-08T08:35:41.467-07:00Day 7: Obinutuzumab infusions<p>Days 3 and 4 after two treatments of Obinutuzumab were good days. I felt alert and even walked a mile each day. </p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>Dr. La Verne</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-20542442556957831212024-01-03T16:41:00.000-07:002024-01-03T16:41:09.894-07:00Day 2: New Treatment (01-03-2024)<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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. </p>
<p>Love & Gratitude,
Dr. La Verne</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-1397066667335089362024-01-02T16:42:00.000-07:002024-01-02T16:42:00.184-07:00Day 1 of new treatment (01-02-2024)<p>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. </p>
<p>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.</p>
<p>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.</p>
<p>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. </p>
<p>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.</p>
<p>The nurse gave me prescriptions for the side effects. </p>
<p>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!</p>
<p>I will keep you updated on how everything goes tonight. Until then, be grateful.</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-29167966678757375932023-11-28T07:47:00.000-07:002023-11-28T07:47:21.298-07:00I am Waiting for the Light<p>People say that I am “a tough bird,” “scrappy,” and “resilient.” If I seem unemotional at times, it is because pragmatism is my survival mode. </p>
<p>Everyone thinks I am fine because I have always had to be strong. I have always been the one with a good head on my shoulders. I have always pulled up my own big girl panties and dealt with the challenges in my life. I realize now I have passed my most difficult internal moments alone when everyone believed I was okay.</p>
<p>I have never been able to roll over and let someone else lead the way. I have never had that option. Perhaps the truth is that I have never allowed someone to lead the way because I have always believed I had to do it myself.</p>
<p>In today’s blog I will get real and share the other side of my cancer journey – the emotional side. Ever since I was diagnosed with high-risk chronic lymphocytic leukemia, I have not been able to have a fully engaging cryfest. I have wanted to cry, because I understand how therapeutic it is for your body and mind to get those tears out. At times I think I should watch the movie “The Notebook” again to release my emotions. I figured out that I must have difficulty crying because deep down I am afraid that if I start crying, I may not be able to stop. There are days when I feel like I have used up my quota of tears in my life, and there are no more to shed.</p>
<p>Being diagnosed with cancer is a grieving process. We are grieving about the life we no longer have. We are grieving about the unfairness of it all.</p>
<p>Clinical complete remission was a good place for me to be. I could go through my life not focusing on the cancer all the time. I could look at my life with fresh eyes and be grateful for all my blessings. I could really live.</p>
<p>Then the cancer progressed. Yes, as my blood brother George says, “It’s a bump in the road.” I got my shit together and got my plan in place for the next treatment. I was ready. I was ready for any side effects, since I have spent years in a Phase 2 trial which is all about side effects. I looked forward to getting ‘er done.</p>
<p>Then it happened. The 41-minute conversation I had with the pharmacist about the toxicity of the drug changed my perspective. I have been one of those people who tried to live a clean life. I never smoked. I never took drugs. I only drank a glass of red wine once in a blue moon. I always tried to live a healthy life. And there I was … coming to terms with the fact that I cannot put this cancer drug in my weekly pill box because it will contaminate the rest of my vitamins and medications. I must wash my hands before I take the pill and it is preferred that I dump the pill from the bottle to a paper cup before it goes in my mouth. I must wash my hands after I take the pill and God forbid that I accidently touch my eyes. What in the hell am I going to be putting in my body?!? And this is my best option, according to the experts. There are days I want to drive down Central Avenue with my car windows rolled up and scream at the top of my lungs!</p>
<p>Many of my blood sisters and blood brothers on this journey have been able to do well off cancer meds and not had to move on to another cancer treatment. Because I drew the Bingo card for high-risk CLL, that does not apply to me. And I started the whole grieving process again of “Why? Why me?”</p>
<p>I fully understand that the thoughts I play in my head affect my body. I get that. Sometimes I just must give myself grace and know that this is the journey I must take in my life. My life has purpose. I know I am not done with what I am supposed to be doing on this earth. I want to keep living, but I am also not afraid to die. When it is my time to die, I want to do it doing the things I love.</p>
<p>I suppose part of the frustration is that the movie of my life I play in my head is not the reality of what I must live with. I know others have it far worse than me, but for today I am going to allow myself to be the focus. I am allowing myself to have a pity party. Believe me, I do not want anyone else to pity me. I can do that very well all by myself.</p>
<p>Others tend to lean on me, but sometimes I am the one who needs a shoulder to lean on. I just need a little kindness right now. I sometimes ask myself why I feel like I reach out to others, value, and love them more than they do me. If I stopped reaching out, maybe I would be faced with the stillness of silence. Maybe that is okay.</p>
<p>I have always been the giver in life. Lately I have been asking myself “When is it my turn?” Maybe it will never be my turn and that’s just how life is. Maybe that is okay.</p>
<p>I am waiting for the light to shine on my life again. Today is just one of those days. But I am exhausted now, and a few tears are starting to fall. Tomorrow will be another day … God willing.</p>
<p>Dr. La Verne</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-11299627097170127212023-10-20T20:09:00.006-07:002023-10-23T14:23:32.778-07:00The Shoe has Fallen!<p>I had a great run with Imbruvica (ibrutinib) – over 11 years. I was recently in San Diego at a marketing conference celebrating the 10-year anniversary of the FDA approval of the drug by blowing out the candles on a cake with the President of Pharmacyclics Erik von Borcke. We have known each other for years. That’s my 15 minutes of fame. My participation in the National Institutes of Health (NIH) clinical study helped ibrutinib become the frontline treatment for high-risk chronic lymphocytic leukemia (CLL) patients in the world.</p>
<p>Despite the long-lasting remissions using chemoimmunotherapy and oral cancer drugs, most CLL patients will relapse eventually. In April 2022, NIH found two markers indicating I was becoming resistant to the drug. It has taken my body a while to finally get to the point that I can say, “The shoe has fallen!” We thought it would happen in a few months.</p>
<p>I just returned from the day hospital of NIH. They verified that the cancer is advancing. It is in my underarms, collarbone, left jaw, left side of abdomen that they know of. I knew something was going on since I have been having a great deal of fatigue. I have good and not-so-good days. Sometimes I have to take a 4-hour nap.</p>
<p>Monoclonal antibodies, such as rituximab, have gained popularity in the past decade for CLL patients who have refractory or relapsed CLL. Gazyva (brand name/obinutuzumab (scientific name), is an updated CD20 antibody. It is thought to achieve a more durable response. With the advice of my medical team at NIH I have chosen obinutuzumab as a partner with Venclexta (brand name)/Venetoclax (scientific name) for my next treatment.</p>
<p>I will be on ibrutinib until I begin the new treatment. I will begin with Infusions of obinutuzumab on days 1-2-8-15. Then I will have monthly infusions for 6 cycles. Sometimes adjustments need to be made and it might take longer, if I get neutropenia.
On Cycle 2 the venetoclax ramp up begins for five weeks. Once I am stabilized, I will be on venetoclax for two years. Hopefully I will be in remission by then and it will give me about five more years. Then I will have to find another treatment.</p>
<p>I am grateful this time I have an option. When I was first diagnosed in 2009 with high-risk CLL, I had no options.</p>
<p>This is my plan:</p>
<p>• Port</p>
<p>I am waiting for Chandler Medical Hospital to call me so I can schedule the surgery to have a port put in. It will have to be flushed every 4 to 6 weeks. I already had a blood-clotting procedure done.</p>
<p>• CT Scan</p>
<p>I am waiting for the paperwork to go through to SMIL Imaging so that I can schedule a CT scan from my neck down, so that I can see my tumor burden and the oncologist will have a baseline.</p>
<p>• When do the monoclonal antibody infusions start?</p>
<p>I asked the oncologist if it would be a detriment to my health if I was able to delay the infusions until January 2 so that I could spend Thanksgiving and Christmas with my family. The other concern with the delay is that I would like to get through this procedure so that I am well enough to travel to California for my daughter’s wedding, even if I must work around the infusion schedule. She said that would probably work.</p>
<p>As soon as the drugs are approved by the insurance company, I can schedule the infusion dates: 4X the first month. The administration begins on day 1, 2, 8, and 15. Then 1X per month for 6 months.</p>
<p>Obinutuzumab infusions are administered in the chemotherapy room of the doctor’s office in Cycles 1-6. The monoclonal antibodies infusions will take several hours to administer depending on where I am in the process.</p>
<p>If there is a problem and I get neutropenia, the procedure will be delayed. Neutropenia is when you have too few neutrophils, a type of white blood cells. It causes infections.</p>
<p>If I have a reaction, I may feel a fast heartbeat, tiredness, dizziness, headache, redness of the face, nausea, chills, fever, vomiting, diarrhea, rash, high blood pressure, low blood pressure, difficulty breathing, and chest discomfort. The procedure may have to be slowed down if I have a reaction.</p>
<p>• Venclexta (brand name)/Venetoclax (scientific name)</p>
<p>Venetoclax is taken from Cycle 3, Day 1, after the first 2 cycles of obinutuzumab. I will have a 5-week dose ramp-up to 400 mg. I will be going to the oncologist’s office to be monitored and checked for drug tolerance, and I will get blood work done every week.</p>
<p>The most common side effects for venetoclax during the ramp-up include myelosuppression ± infection, bleeding, diarrhea, nausea, vomiting, fatigue, musculoskeletal pain, cough, dyspnea, edema, abdominal pain, headache, rash and pruritus (itchiness).</p>
<p>• Prescription Insurance</p>
<p>My oncologist must get approval for the new drugs from the insurance company. Thank goodness I have additional prescription insurance. John C. Lincoln HonorHealth Specialty Pharmacy will work with me. I found out that Plan B should cover my infusions of obinutuzumab. I am crossing my fingers. The venetoclax drug will be mailed to me. I have a call going into my prescription insurance agent to figure out the out-of-pocket cost of the drug.</p>
<p>Take care. No worries. Remember that there is always someone else worse off than you, so count your blessings!</p>
<p>Dr. La Verne</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-87645482410660516692023-10-10T09:58:00.003-07:002023-10-10T09:58:57.537-07:00How Ibrutinib Price Negotiations May affect You<p>Sep 27, 2023 Suzanne Mooney wrote an article about how ibrutinib (Imbruvica) price negotiations may affect the CLL cancer patient.</p>
<p>Ibrutinib (Imbruvica) is the only cancer drug of the 10 medications listed for price negotiations by the Inflation Reduction Act of 2022. If you are a CLL patient considering taking this cancer drug or if you are already on this drug, please go to this link to learn about the price of Imbruvica:<a href="https://www.patientpower.info/chronic-lymphocytic-leukemia/how-ibrutinib-price-negotiations-may-affect-you" target="_blank"></a>
https://www.patientpower.info/chronic-lymphocytic-leukemia/how-ibrutinib-price-negotiations-may-affect-you</p><p>Thank you Patient Power!</p>Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-55090083721293058482023-09-23T14:12:00.000-07:002023-09-23T14:12:13.995-07:00R.I.P. my mentor Dr. Chaya Venkat<p>Chaya is the reason I am still alive today. She was my mentor and helped me navigate through my high-risk CLL. She encouraged me to find a clinical trial since I had no options in 2009. When I was rejected from the trial, she encouraged me to read through the NIH grant and find a way that I qualified. She told me to put on my researcher’s hat. I found a way. I called them back and I was accepted. I had a chance to meet her in person when I was in the trial. I love her with all my heart.</p>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-V8LqX_kAB6ud2RPDVkxw70EWEdQQcRcOOJRTbGC5E4QVd0Txd3RzoO3idCqkZP_wJ0cSsaZeOGIdhDs_5fdpihZAbREzGPB9w9LjnUNK75pudhCiv08Q3ZDX_doAPBNT42elc_0y8jX1QW3Bd6xKICmHbc_altdbacwVFegOyOWvgWn2PsLhGHCRAEY/s574/Chaya.jpg" style="display: block; padding: 1em 0; text-align: center; "><img alt="" border="0" height="320" data-original-height="574" data-original-width="502" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-V8LqX_kAB6ud2RPDVkxw70EWEdQQcRcOOJRTbGC5E4QVd0Txd3RzoO3idCqkZP_wJ0cSsaZeOGIdhDs_5fdpihZAbREzGPB9w9LjnUNK75pudhCiv08Q3ZDX_doAPBNT42elc_0y8jX1QW3Bd6xKICmHbc_altdbacwVFegOyOWvgWn2PsLhGHCRAEY/s320/Chaya.jpg"/></a></div>
<p>https://updates.clltopics.net/5234-dr-chaya-r-venkat-1948-2023</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-89996340217443278592022-11-26T10:44:00.000-07:002022-11-26T10:44:16.816-07:00Holding Pattern<p>I am in a holding pattern.</p>
<p><b>hold·ing pat·tern</b></p>
<p>/ˈhōldiNG ˈpadərn/</p>
<p><b>noun<i></i></b></p>
<p>1. the flight path maintained by an aircraft awaiting permission to land.</p>
<p>Every person has the potential for a cancer cell to form in his/her body. Mine was not familial. It was environmental – much like the Viet Nam vets who were exposed to Agent Orange.</p>
<p>Well, the Dragon and I recently had a heart-to-heart talk since he reared his ugly head again. I am a cancer survivor and I have gone on with the business of living. The Dragon has been sleeping for a decade. He is stirring and waking up again.</p>
<p>I still have work to be done on this Earth. There are loved ones who depend on me being here. The Dragon does not show any empathy.</p>
<p>I have come to the conclusion that I am not the Dragon Slayer. I am more of the Dragon Tamer. Some have even called me the Dragon Lady. So, I had a conversation with the Dragon Slayer – Dr. Adrian Wiestner. I am making my next survival plan. Dr. Adrian Wiestner called me when I flew back to Arizona from NIH and we chatted on the phone about the strategy and options ahead of me.</p>
<p>Dr. Wiestner recommended continuing to take ibrutinib while scaling up for five weeks on venetoclax, when the time comes. Then after the ramp-up, the local oncologist will add infusions such as rutuimab or obintuzumab or another kinase inhibitor, such as acalabrutinib.</p>
<p>I am in a “holding pattern.” I cannot stay and hover here forever, because sooner or later I am going to have to land. Until then, I am going to enjoy the scenery.</p>
<p>Dr. La Verne</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-89862380395865896692022-09-08T13:46:00.000-07:002022-09-08T13:46:27.642-07:00I got Covid<p>Mid-July and mid-August I have stabilized as far as my white-blood count, hemoglobin and platelet count are concerned, even though there is evidence that I am becoming resistant to Ibrutinib. I will be having another blood test in mid-September, so we will see what happens.</p>
<p>On another note, the fear in the medical community is cancer patients like me getting Covid. My husband Carl woke up with a serious headache, foggy brain, nausea, extreme fatigue, and body aches. We tested him for Covid and he was positive. He threw up for five days and was miserable. His severe headache lasted a few days and then became milder. His foggy brain lasted 10 days.</p>
<p>This is a man who works out every day doing cardio and weights. He had been vaccinated and had a booster. After two weeks he still tested positive even though he felt better. We slept in separate rooms, used separate bathrooms, and wore masks in the house. I knew it was a matter of time before I tested positive.</p>
<p>I tested negative for the first two days Carl tested positive. Then on the third test, I tested positive. I had barely a headache for a little over a day, and for two days I had a low-grade fever (99 degrees). I had more fatigue than I usually have. My taste and smell were not affected.</p>
<p>NIH suggested a prescription of paxlovid, an anti-viral medicine, which both of us were prescribed. Carl began taking paxlovid the third day he was symptomatic. I took it the first day I tested positive and I believe that helped me from getting a more serious case. The anti-viral medicine is taken for five days in a row (two times a day). Carl reported a terrible and bitter taste in his mouth the first day he took paxlovid. It tasted like metal to him. He has really good taste buds and smelling skills. I do not. I barely could taste the paxlovid the second day, and then it didn’t bother me anymore.</p>
<p>Today is Carl’s second day of testing negative. I have tested negative for the past six days. I really don’t understand why I am the immune-compromised person, yet I got a mild case. My oncologist said that there is still so much we don’t know about Covid and why it affects people differently.</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-5220871628283697642022-07-18T16:40:00.000-07:002022-07-18T16:40:45.246-07:00The Dragon is Rearing Its Ugly Head<p>Before I was diagnosed with cancer, I thought that when someone was in remission it meant that the cancer was gone. Little did I know that it means the cancer is being held back and not progressing. I have been on ibrutinib (IMBRUVICA® brand name) for a decade and have had a good run of it. I began taking the experimental oral cancer drug July 12, 2012. By January 15, 2015, I was declared to be in clinical complete remission. It was not until April 15, 2022, that the National Institutes of Health (NIH) medical team thought that I may be developing resistance against ibrutinib. </P>
<p>I recently returned from a meeting with my NIH medical team. The good news is that my lymphocyte doubling time has slowed down and my body is stabilizing. They will be focusing on my platelet and hemoglobin counts when I get blood work done.</P>
<p>After a full body scan and numerous blood tests, they determined that I had developed two mutations in my blood – a BTK mutation, which is indicative of ibrutinib resistance, and a BCL2 mutation, which are associated with increased risk of transformation and shortened survival.</P>
<p>SIGNS THAT THE CANCER IS DOUBLING</P>
<p>I need to be mindful of my body. If I see changes such as unintentional weight loss, fatigue, pain, night sweats or fevers, I am supposed to contact them right away. I mentioned to them that pain is relative. I had two babies a ’la natural with no drugs. They said I would know.</P>
<p>THE NEXT CANCER TREATMENT</P>
<p>I have made the decision to follow the advice of the NIH medical team who has kept me alive for the past decade. I selected venetoclax as my next treatment.</P>
<p>There are still some slots left in the 5-week venetoclax (VENCLEXTA® brand name) ramp-up at NIH. The 5-week ramp-up is a clinical trial where the NIH medical team carefully monitors the patient for half a day in the hospital for a period of five weeks and slowly the venetoclax drug is slowly ramped up. The reason that it is slowly ramped up is because if the drug does its job too well and gets rid of too many white blood cells at too fast of a pace, it causes tumor lysis syndrome, which causes death.</P>
<p>Whether I will be one of the ones in the trial remains to be seen. The medical team is advising that I have rituximab infusions for six months, along with venetoclax. I don’t have the details of when that would be given to me. I am dealing with one thing at a time. Provided all goes well in the 5-week ramp up, I will hopefully only have to take venetoclax for two years before my next remission. I am counting on this!</P>
<p>THE COST OF THE CANCER DRUGS</P>
<p>You would think that dealing with cancer was enough of a challenge for a person but dealing with the cost of an FDA-approved drug is another challenge. Because of the way the laws in our country are written, an oral cancer drug does not have the same medical coverage as a cancer drug given intravenously. It is not covered by Medicare. The FDA-approved drug venetoclax costs $170,000 a year. I have prescription insurance, but it is not fully covered. It is still a hardship for most average Americans.</P>
<p>I have been to DC with a team of experts (medical doctors and the president of the Leukemia & Lymphoma Society) to meet with our Congressmen and Congresswomen about five times in the past decade to discuss this antiquated law that was written before oral cancer drugs were invented. We have told them that cancer drugs are cancer drugs whether they are given through the veins or through the mouth. I have told several senators and representatives my story. They appear empathetic yet noting gets done in Congress. It is beyond infuriating.</P>
<p>Well, the Dragon and I have had to have a heart-to-heart meeting. I will tell you of our conversation in my next blog. For right now, consider me in limbo, but doing fine. I am going about with my life and enjoying every second of it!</P>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-49488592303301668882022-03-31T09:17:00.000-07:002022-03-31T09:17:19.063-07:0080 percent of Evusheld doses are unused because no one knows about this drug<p>The New York Times "The Morning" (March 28, 2022)addressed the issue of the immunocompromised, who have ineffective protection with Covid-19 protection. There is a drug called Evusheld, developed by AstraZeneca, but no one seems to know about it. I blogged about it right after I received my two injections. It provides months of protection. 850,000 people could get added protection but about 80 percent of the doses are sitting in hospitals, warehouses, and pharmacies unused.</p>
<p>Why is this happening? It is because no one knows about it. Or no one knows who qualifies.</p>
<p>We need a plan, people!</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com2tag:blogger.com,1999:blog-4323054353606125529.post-90164600595619236132022-03-10T18:00:00.032-07:002022-08-27T11:12:59.078-07:00Immunocompromised? Need protection against Covid-19?<p>You would think that I would have lots of protection against Covid-19. I have not only had the vaccine, but two boosters. Still my antibodies have been 366 at the highest with the range being zero to a little over two thousand.</p>
<p>I decided to seek other options to protect myself. I found out about Evusheld from one of my cancer groups. Evusheld is a combination of two monoclonal antibodies (tixagevimab and cilgavimab) injected one in each hip/buttocks to protect the immunocompromised patient from Covid-19. The medications are lab-made proteins that act like antibodies to fight infections.</p>
<p>Not every person is qualified to get the injections. First of all, you need to have a medical condition or have not developed a strong enough response to the Covid-19 vaccine. You have to be at least 12 years old and weigh at least 88 pounds. You cannot be currently infected with SARS-CoV-2 and have not had close contact with an infected person.</p>
<p>The medicine needs to be prescribed by your physician. It is not an FDA-approved medicine in the United Stated; however, the FDA has issued an Emergency Use Authorization (EUA).</p>
<p>The entire process lasts 90 minutes. After the two injections, the remainder of the time is spent observing your response. I did not have any issues with the injections, nor did I have any side effects.</p>
<p>The injections do not increase your antibodies. What happens is that your cells are neutralized with a “shield” so that the virus cannot attach itself.</p>
<p><b>PLEASE READ THIS UPDATE:</b></p>
<p>The information I posted came from the nurse who injected the Evusheld in me.</p>
<p>Beth's comments are worth reading:</p>
<p>Beth has left a new comment on your post "Immunocompromised? Need protection against Covid-19?":</p>
<p>I always enjoy your posts, but think that in your most resent post that you have misrepresented Evusheld. The monoclonals that comprise Evusheld are anti-spike antibodies, binding only to the spike protein of the virus. Your cells are not neutralized with a shield so that the virus cannot attach. Evusheld antibodies do not bind to your cells. That would be the case with anti-ACE2 antibodies, which would coat the cell prohibiting spike attachment, but that is not how Evusheld works. Tixagevimab and cilgavimab bind to the spike, preventing the virus from binding to the ACE2 protein on the cell surface.</p>
<p>Also, I do not think that there is any weight limitation for adults. According to my reading of the Evusheld Fact Sheet, the 88 lb cutoff applies to adolescents. https://www.fda.gov/media/154701/download</p>
<p>One other comment that is a bit misleading is that the range of antibody production post-vaccination is “zero to a little over two thousand”. The >2500 is simply the cut-off for what is reported by Labcorp. In healthy individuals the actual antibody titer is frequently 10+ times higher than the reported cut-off level.</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com2tag:blogger.com,1999:blog-4323054353606125529.post-52181041891893809952021-09-04T12:56:00.000-07:002021-09-04T12:57:24.425-07:00Covid-19 Antibody Tests for CLL patients<p><b>Covid-19 Vaccine</b></p>
<p>It is important to note that these vaccines are not made by genetically-modifying technology. They do not make permanent genetic changes to our DNA. They do not work on our stem cells – only our immune cells.</p>
<p>After taking the Covid-19 vaccine, you may want to be tested to see if your body has developed any antibodies. What is important to know is that it may take longer for your body to produce antibodies than it is for a person who does not have CLL or who is not immune-compromised. You may want to wait at least a month.</p>
<p>A number of CLL patients (including me) signed up for the Leukemia and Lymphoma Society (LLS) clinical trial so that Dr. L. Saltzman could run some antibody tests on them to see the response of the vaccines: (1) SARS-CoV-2, Nucleocapsid; SARS-CoV-2 Semi-Quant Total Ab; Venipuncture; and (2) SARS-Cov-2 Semi-Quant Total Ab.</p>
<p>One of the tests is the nucleocapsid antibody test and the other test is the antibody spike protein test. You may need a prescription from a doctor to have these tests run in your local lab. These tests give you more information.</p>
<p>The nucleocapsid antibody test shows whether or not you have been exposed to Covid-19. If the nucleocapsid antibody test results are NEGATIVE, it means you have not been exposed to Covid-19. </p>
<p>The antibody spike protein test will show the number of antibodies you have developed. The antibody spike protein test indicates any titers produced by being exposed to the vaccine. Titer testing tests immunity. The importance of this is if it is POSITIVE, then you have had a response. That is good news. As to how protected you are if you have a small number, no one knows for sure right now. </p>
<p>Many CLL patients have not been able to produce antibodies or the number is so low that it appears to offer no protection. But this is only part of the solution to being protected against Covid infections. Don’t forget about your T-cells. They help protect you as well. Even if your numbers are so low that you essentially think you have no protection, it’s possible your T-cells can respond and protect you from future infections. </p>
<p><b>T-Cell Clinical Trial</p></b>
LLS will be starting a T-cell clinical trial soon. The T-cell test is available in research labs but it is not commercially available right now. LLS will be testing patients who are taking Imbruvica, Rutuxan, Gazyva, etc. Patients with a response will be tested against patients who did not respond.</p>
<p><b>And now what?</p></b>
<p>What CLL patients are ultimately hoping for is an anamnestic response, which means that there will be an immune response after serum antibodies can no longer be detected in the blood.</p>
<p>The answers will be found right around the corner…</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-88371724359165831772021-07-29T11:38:00.000-07:002021-07-29T11:38:36.462-07:00To booster or not to booster?<p>Dr. Gwen Nichols, Chief Medical Officer at Leukemia & Lymphoma Society (LLS) states that blood cancer patients are at increased risk of serious illness and death from Covid-19. She recommends avoiding poorly ventilated indoor spaces, wearing masks, social distancing, and staying away from crowds. When others get vaccinated and wear masks, they are protecting those people with compromised immune systems.</p>
<p>But what if you are a cancer patient and you have been inoculated? After taking the antibody test, many inoculated blood cancer patients found out that they do not have protection against the Covid-19 virus.</p>
<p>The Leukemia & Lymphoma Society examined the safety of the Covid-19 vaccine and they also tested the number of antibodies produced by blood cancer patients who had been vaccinated. The results showed that the Covid-19 vaccine is safe, but according to the results of the clinical study (NCT04794387), a number of blood cancer patients do not produce detectable antibodies. They were found to be seronegative.</p>
<p>Thirty-six percent of CLL participants were found to be seronegative after being vaccinated; however, a much higher percentage were found to have no antibodies in the sub-group of CLL patients who within the last two years had taken BTK inhibitors such as ibrutinib, a BCL2 inhibitor such as venetoclax, anti-CD20 antibodies or combination therapies. </p>
<p>Why is that so? We know that B-cells help to make antibodies when a person is vaccinated. Each of these blood cancer therapies affects B-cells. This leads us to deduce that the possibility exists that these cancer drugs could be preventing Covid-19 antibodies from multiplying. And will there be clinical trials with patients on these therapies?</p>
<p>July 8, 2021 Pfizer and Moderna publicly stated that boosters may be in the future. Dr. Anthony Fauci, director of the U.S. National Institute of Allergy and Infectious Diseases, recently indicated that that booster doses may be authorized in the USA for the immunocompromised patients. </p>
<p>July 28, 2021 Pfizer/BioNTech announced that a third dose of the Covid -19 vaccine can boost protection against the Delta variant. Data suggests that if you are 18 to 55 years of age, a third dose can boost your antibody protection five times greater than your second dose (Howard, J., CNN). If you are 65 to 85 years of age, a third dose can boost your antibody levels against the Delta variant 11-fold following your second dose. In addition to the Delta variant protection, the third dose also increases protection against the original coronavirus variant and the Beta variant.</p>
<p>The CDC is in discussion about recommending booster doses for patients with compromised immune systems. Emerging data in two studies have reported an increase in antibody numbers after being given a booster shot following the full vaccine dosage. One study consists of solid organ transplant participants and another consists of blood cancer participants.</p>
<p>Last week, the CDC's Advisory Committee on Immunization Practices (ACIP) met and discussed immunocompromised individuals receiving a third booster dose. Its members seemed to be supportive of allowing this if recommended by their doctors; however, as of July 28, 2021 the official stance of the CDC and FDA is that a third booster of Covid-19 vaccines are not needed.</p>
<p>Earlier this month Israel and France began to give third booster doses of the Pfizer-BioNTech vaccine to some immunocompromised individuals. France is also including hospital staff over the age of 50 and older individuals.</p>
<p>Another 200 million doses of the Pfizer vaccine have been purchased by the United States. Are these future boosters? </p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-53747489847073061732021-04-15T12:32:00.000-07:002021-04-15T12:32:01.941-07:00My blood brother Joe's afib issues with ibrutinib<p>My friend Joe is a guest blogger today. He has just been taken off ibrutinib because of afib issues with his heart. Here is his story: </p>
<p>In May 2005, after an annual check-up with my PCP, I got a call from him asking me to come in again. He told me I had leukemia, chronic lymphocytic leukemia (CLL) and that he’d set up an appointment for me with a local oncologist. The oncologist confirmed the diagnosis and told me I wouldn’t likely need treatment for several years, if at all. </p>
<p>About seven years later, due to a large and uncomfortable spleen, a very high white cell count, many large lymph nodes and an apparent infiltration of CLL cells in my bowel, treatment was next. I went to a CLL expert and along with my local oncologist we decided on a clinical trial at a major clinical center with the drug then called PCI-32765. </p>
<p>I started the drug and fairly quickly my symptoms decreased. I was taking three 140mg capsules a day, all together in the morning. Some time later, I had episode of afib. I had a couple of these before starting the new drug but it was decided to reduce dosing to two capsules a day just to be safe as the drug had shown to have some possible cardiac side effects. The drug was later called ibrutinib and later still Imbruvica and achieved FDA approval for treatment of CLL. For several more years I continued on ibrutinib with few side effects and successful symptom treatment. My white cell count was in the normal range. </p>
<p>Early this year, I had another episode of afib. This was while on 50mg of metoprolol prescribed by my cardiologist to hopefully head off any other afib events. I called the clinical center to inform them. They suggested a Zio monitor which I used for 30 days. The monitor picked up an episode of V-tack and even though quite brief (four beats apparently while sleeping) the recommendation was to stop the ibrutinib – “a drug holiday” for three months, then to follow up with a second Zio monitor and evaluate our next options from there. </p>
<p>When I had a telehealth visit with my doctor, she said all looks well with one exception not related to white cells but hemoglobin. She just said to follow that up locally for now. I might not eat enough meat. </p>
<p>There are also other newer drugs one of which I’d been reading about called LOXO-305 which is in trials. I thought that it might even be possible to return to the lower dose of ibrutinib but that is unlikely with cardiac concerns. We discussed venetaclax, acalabrutinib and even that LOXO-305. I am looking into clinical trials. There is a venetaclax ramp up trial (short-term later to be followed locally) and one other trial currently on hold. </p>
<p>The doctor verified that I will be coming off ibrutinib. The risk for me with cardiac issues is apparently not worth continuing. </p>
<p>So, for the time being, I am once again not being treated for CLL. My doctor and I are once again developing our next plan to cope with this intrusive visitor. So, it looks like watch and wait again from here. </p>
<p>-- Joe</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com0tag:blogger.com,1999:blog-4323054353606125529.post-74487063515384585552021-04-08T08:07:00.001-07:002021-04-16T09:04:26.058-07:00CLL patients developing antibodies from vaccines<p>Today I would like to chat with you about the antibody response to vaccines given to CLL patients. The first part of my post is an anecdote and further studies are ongoing. The second part of this post include the scientific results of two other vaccines given to CLL patients, two studies in which I participated.</p>
<p>PART 1:
My friend Anne is in the same clinical trial at National Institutes of Health (NIH) as I am. We have been both been taking Ibrutinib since 2012. She got both shots of the Pfizer vaccine and was curious if her body would respond by creating antibodies.</p>
<p>In a normal healthy person, the Covid-19 immunity process typically takes two weeks after the second dose of the vaccine. One month after Anne’s second dose the total IgG/IgM antibodies to SARSCoV-2 Nucleocapsid protein test results were nonreactive, which means no antibodies were found. However, eight weeks after Anne got the second dose antibodies were finally detected: Positive >0.79. There’s a little hope here. It will be interesting to see if the antibodies continue to increase in number.</p>
<p>As a cancer survivor and Ibrutinib user, I am interested in my own immunity process. NIH will soon be opening a CLL vaccine clinical trial on antibodies. As soon as I am notified that their proposal has been approved, I will post the information to the NIH clinical study on the antibody response to the vaccine in CLL patients.</p>
<p>Another option is the Leukemia and Lymphoma Society (LLS) is setting up a patient registry and is paying for quantitative antibody testing at LabCorp. This study expands to more types of cancers. The link to their registry is: https://www.ciitizen.com/LLS/?utm_source=LLS&utm_medium=Partner%20Landing%20Page&utm_campaign=&utm_content=&utm_channel=LLS&utm_vehicle=</p>
<p>PART 2:
<p>I was one of the participants in the NIH CLL HEPLISAV-B (hepatitis B) and SHINGRIX (shingles) vaccine studies. The recently published initial results from the vaccine studies has been published.</p>
<p>The full article can be found here: https://ashpublications.org/blood/article/137/2/185/474376/Effect-of-Bruton-tyrosine-kinase-inhibitor-on?searchresult=1</p>
<p>Below is a brief summary of the results from NIH:</p>
<p>SHINGRIX: Approximately 60 percent of untreated patients CLL patients and approximately 40 percent of BTK-inhibitor (ibrutinib or acalabrutinib) treated patients developed an antibody response against the shingles virus. This response rate is less than in the general population, however we are encouraged by these responses and recommend the SHINGRIX vaccine to CLL patients that have not yet received it. However, we do not know how long the antibody response lasts. The antibody response to the Shingrix vaccine is based on a research test and, therefore, is not part of your CRIS record.</p>
<p>HEPLISAV-B: Approximately 30 percent of untreated patients CLL patients and approximately 5 percent of BTK-inhibitor (ibrutinib or acalabrutinib) treated patients developed antibodies against the hepatitis-B virus. Patients treated with a BTK-inhibitor do not appear to reliably develop antibodies following vaccination with HEPLISAV-B. CLL patients that are untreated are still able to develop antibodies against the hepatitis-B virus, albeit at lower rates compared to the general population.</p>
<p>Side Effects: The side effects for both SHINGRIX and/or HEPLISAV-B were very similar compared to those observed in the general population – there is therefore no evidence to suggest that CLL patients suffer from more side effects following vaccination.</p>
<p>As cancer survivors we have some hopeful news. As Dr. Brian Koffman says, “We are all in this together.”</p>
Dr. La Vernehttp://www.blogger.com/profile/02731948543092852802noreply@blogger.com3