Month: June 2021

I was a few months into the non FDA administration of my new miracle cancer drug Gleevec. The side effects were harsh as expected but the expected outcome of success at a gradual pace made it worth the while. I was making bi- monthly treks down to the city to see Dr. Dave for bloodwork and general examination. Even though the trial was over, Gleevec patients needed to be closely monitored for any severe side effects and to make sure our responses were consistent. At last, there were no more bone marrow aspirations. Thank God. My hips were permanently scarred by so many deep intrusions into my bone. I knew that there were more to come at some point but a break from the action was well deserved, mentally and physically. Since patients in the Philadelphia area that were taking Gleevec were far and few between, remember “rare” cancer, information about other patients in the same realm was hard to share. Information about dosages, side effects, outcomes and general discussions by contemporaries were non existent.

Most Leukemia patients at the time of my diagnosis would get up to date information about their disease through a small international website called CML BY ANJANA. A young Indian woman had started this very informational chat site to learn all that she could learn about CML and ascertain information about the cancer. Anjana, herself a scientist, was having her own crisis as her husband was diagnosed with CML himself. Her site was amazing. Informative, insightful and compassionate, Anjana would answer and break down any questions for anyone who needed useful information about the disease. I myself used her site often and followed along with the chat. So much information could be found about our cancer. A collaboration of ill people seeking answers and dishing out love and well wishes along with hope and civility.

Through the website, I received an email from a gentleman named David W. He was a CML patient who lived in the Philadelphia area and was in search of other like people who were currently taking Gleevec. He had recently been diagnosed with CML and immediately began a regimen of the newly approved drug. His desire was to find a few recipients of the drug who might want to get together for dinner and discuss our similarities and exchange conversation about our experiences with CML and Gleevec. The first Philadelphia Chapter CML Club was born. Dave and I along with three other woman recently diagnosed met at an Asian Fusion style restaurant in Center City Philadelphia. The conversation was deep and very scientific. After the usual pleasantries and introductions we delved deeply into our stories, our situations, our medications, our side effects and our outcomes. I was the only person in the group to have been diagnosed pre- Gleevec and had suffered through years of medical torture, multiple aspirations and a bone marrow transplant. The main gist of our conversation was that we all were responding to the drug. We agreed to meet again after a three hour soiree and followed up at one of the women’s homes as our second spot. The meetings continued every third month and as our numbers grew, we needed to find a venue large enough to hold the many other new patients joining the club. After about eight months, the Leukemia/ Lymphoma Society of America became our new meeting place. The huge LLS building near the Philadelphia Airport would accommodate our crowd along with a Chapter nurse and LLS administrator to proctor and answer technical medical questions…. much better. My participation began to wane after a while. Being an original founder, I needed a break. I was on the road to recovery. The club had so many new members who needed a lot of care. And hope. It was dragging me down. I needed to turn the page and handle my own recovery. I wasn’t being selfish. I was just the longest diagnosed patient there. I’d been through so much more. I was still not in remission and still not seeing that light at the end of the tunnel. I left the last meeting that I would attend with only well wishes for all and never looked back. I was looking for that light and had all the information I needed. My philanthropy had not ended though. I owed much more. Much more.

Next Up: The Beginning

Before we delve into the scientific origins of and the mechanics of the drug named Gleevec, let’s review the diagnosis of CML-Chronic Mylogenous Leukemia. CML is defined as a rare, slowly progressing blood cell cancer that begins in the Bone Marrow. A genetic change in the body’s Myeloid cells caused by a mutation that forms an abnormal gene called the BCR-ABL gene begins turning cells into CML cells. Most people diagnosed with CML have an abnormal chromosome in their DNA called the Philadelphia Chromosome. With CML, the patients Leukemic cells grow and divide rapidly, building up in the Bone Marrow and spilling over into the blood. These cells are very immature and are not suitable for fighting infection. Once the population of these cells become uncontrollable, they can spill into other organs and keep other cells in the body from working properly. Without treatment a patients immune system becomes overtly compromised and eventually enters the phase called a Blast Crisis from which recovery is rare and death inevitable. This cycle untreated can last anywhere from one to four years after diagnoses before succumbing to the Cancer. Past treatments included the drugs Hydroxyurea and Interferon, Chemotherapeutic treatment and eventually a Bone Marrow Transplant. Until the early 1990’s when the Bone Marrow Transplant began to be widely used, other treatments were not curative. Still, Bone Marrow Transplants were not a slam dunk. Patients had a 50/50 chance of making it through the transplant and then a 50/50 chance of it being a cure. Until Gleevec.

In 1996, the year that I was originally diagnosed with CML, a doctor named Brian Druker partnered with the drug company Novartis to test compounds that Novartis had been creating called “Tyrosine Kinase Inhibitors”. These compounds were created to stop the uninhibited growth of the proteins that trigger the CML cells to divide uncontrollably. The proliferation of these Tyrosine kinase proteins causes the overproduction and accumulation of immature white blood cells, the hallmark of CML. After 30 years of scientific research, Dr. Druker focused on one particular compound that would eventually become STI-571. In the first targeted FDA trial of STI-571 conducted in 1999, 31 patients were enrolled and 31 out of 31 experienced complete remission. This was virtually unheard of. Being well tolerated, the drug entered a second phase that showed the same results as Phase 1. I was luckily a recipient of STI-571 in the second phase. This would save my life. As I stated in my last blog, the drug would go on to be one of the fastest drugs ever approved for general use to the public. I entered the trial in October of 2000 and the drug was approved by the FDA in April of 2001.

As far as I am concerned, Dr. Brian Drucker is deserving the title of American Hero. His dedication for so many years to the search for a cure to this devastating cancer has saved thousands of lives and relieved so many, the hardships of the devastating treatments needed to survive CML. Now, the frontline treatment for treating the disease is compromised of simply digesting one or two pills a day, side effects withstanding. The discovery of Gleevec has subsequently led to the development of additional stronger Kinase Inhibitors that are used for patients not able to achieve a lasting remission on Gleevec.

Gleevec is indeed a miracle drug. It has made me a living miracle. I owe my life to Dr. Druker and his team as well as my other Doctors, especially Dr. Dave. To this day, I can email or call Dr Druker in Portland, Oregon and he will get back to me personally and quickly. Unbelievable.

Next up: The Philadelphia Chapter of the CML Club

So I was ending the fourth month of my new treatment. The drug labeled STI-571 was working well at this point. I was laboring along with side effects that were very evident yet expected. Night sweats, upset stomach, fatigue, rash, bowel issues and bad reflux. As the drug worked its magic, systematically eliminating the production of new Leukemic cells, I gradually responded to the therapy. My White blood cell count was gradually reducing and my other counts like my Red cells, Hemoglobin and Platelets were dropping lower as well. Collateral damage Dr. Topolsky called it. My midterm appointment with Dr. Dave was so emotional and uplifting for both of us. We worked together for so long and so hard to defeat this animal. We were finally winning. He was so happy. “I told you.Keenan”..”You ain’t dying”. Bad grammer and all, he nailed it!

My next stop that week was JHUH. Dr. Miller was very upbeat and happy to see me. “Jeff, your counts are great!”. This “shit” WAS really good! After drawing blood and hitting the Aspiration table for another round of Shish Kabob by the death princess, I would again receive a transfusion of Platelets and Hemoglobin. Just a pump me up for the week to come. Dr. Miller said that hopefully this would be the last time that I would need them. Hopefully. I would now only have to come once a month to Baltimore to see her but in between a visit for a regular blood draw at Hahnemann. There’s that light!…at the end of the tunnel. Such a long freaking tunnel it was.

The next two months went off without a hitch. The spring of 2001 was here and the prospect for a great year was wide open. We repeated the appointments and the protocol as warranted by the FDA and presented my data religiously. As we entered April, I received a call from Dr’s Topolsky and Miller. “Must be big” , I said. The STI-571 drug trial was over! The second trial was halted due to the drug being declared as an emergency use trial drug with immediate distribution to all patients suffering from CML. The drug was working so well that the FDA felt that it had to be approved for general and international use right now. The fastest drug ever approved for general use to the public. One year from the first trial of approximately 65 people and only 8 months into the second trial of approximately 450 patients with CML. The trials were finished. The drug would be available in our Pharmacies within two weeks. The trial nurse gave me just enough drug to hold me over until.i could fill my first prescription. Thirty brown oval pills. 400 mg once a day, every day, at night as usual at the fabulous price of only Ten Thousand Dollars…a month. Yep, that’s only $330.00 per pill. Thank God for insurance!! It would be called “Gleevec”. Yes…”Gleevec”. I’m gonna miss those crabs though!

Next up: So What is Gleevec?

Luckily, the fiscal year at Belaggio Jewelers ended on a great note. The store was up in revenue about ten percent higher than 1999 and xmas returns were far and few between. Always a great relief….returns suck. I did have some time to rest after Christmas between the 25th and the New Years holiday. Well earned days off by all. As far as I was concerned, I was feeling really low. Soooo tired. My visits to Hopkins were now being stretched to monthly visits. The first week in January we would be heading down to JHU hospital, right after new years. The trek began early in January. The weather down in Maryland in January was just so- so and the trek much more treacherous the day we drove down. My Dad and I weathered the storm and frigid cold ready for another round of the STI-571 protocol. We arrived on time and readied to meet with Dr. Miller. She looked at me and immediately took me by herself directly to the Phlebotomist. She knew that I was not well. Blood drawn, we would need a quick response.

The results came back soon and let Dr Miller know that her suspicions were correct. My Hemoglobin result came in very low. The average male has a correct Hemoglobin count of between 14k and 16k. This is the average count I would be shooting for. Not this day. My Hemoglobin count was literally 3k. Extremely low. Susceptible to disease of all kinds and passing out. Hemoglobin oxygenates your blood. It is necessary to maintain normal cell levels for a healthy life. Dr. Miller told my father and I that I would need to stay in the hospital and receive one, maybe two, units of Hemoglobin blood products before I could leave. This is why I was dragging so bad. No energy. Always trying to nap. Hopkins had special units for transfusions. Basically a gurney that you laid on while a thick IV style needle was placed in your arm to receive the blood products. It took about two hours to complete the process. Receive one unit, test the blood, receive the second unit, test the blood. When it was over, the transfusion blood oxyginated my blood to an acceptable level of around 7.5k.

After a short resting period to allow me to get my faculties in order, I was given a reprieve on the scheduled bone marrow aspiration. What a relief! The Phlebotomist had also taken all of the blood needed for my new study and my CBC results were great. WBC count still reducing, red cells a little too low but Hemoglobin acceptable enough to go home. Dr. Miller would need to see me in two weeks again. Sooner than I had hoped. I was told that Dr. Topolsky wanted see me too. I was exhausted but needed a quick stop at O’Bricky’s for some crabs and a Coke. Always makes the trip a little better. There are always ups and downs when being treated for cancer…for Leukemia. There was no choice. Roll with the punches and hope for the best. And sleep. I needed sleep. My Dad would drive me home and after a quick rundown for Lor, I would be hitting my pillow. Better days ahead. They’re definitely coming…Yep.

Next up: Gleevec… the Miracle Drug

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Here we go again. With Thanksgiving in the rear view mirror, Black Friday too, the Christmas season was a full go. The only day off I would have until Christmas Eve would be my trip down I-95 to Baltimore for my last appointment of the year with Dr. Miller and her crew. No need to bore you with the details at this point since the trip was a rinse and repeat, going through the protocol motions. I was very happy to say though that my white cell counts were improving. This reduction in the amount of cells was very encouraging. At this point STI-571 was working! It was a miracle. A Christmas miracle. An amazing, substantial reduction in the count. My PCR results were trending in the right direction too! This was great news all around and none too soon. If the results had not improved much at this point in my treatment, I would most likely be preparing myself for a second Bone Marrow Transplant. After the usual bloodwork and another freaking bone marrow aspiration, I would be on my way back to continue the holiday grind.

Dr Miller had given me explicit instructions. I needed to gauge myself and not push too hard. I was still really tired all of the time and working so many hours was not helping my situation. My Hemoglobin count was still very low. Neutrophils too. While the drug was working so well, it was hammering my good cells, leaving me wide open to infection. Dr. Miller was worried about me contracting a bad virus or Flu since I would be around so many customers. I began wearing a mask again to help keep the germs away. Having to wear a surgical mask all of the time really sucks. Lol. If I only knew. But business was brisk. I would have to suck it up and make sure all of my customers were taken care of as they were accustomed. Like I’ve said before, we are Santa Claus. There is no…”Oops, I can’t deliver”. Never happen. I love my customers.

I couldn’t wait to get through the three weeks to Christmas Eve. This was such an emotional year for my family and the fact that I was responding well to the new drug, well, this was the best Christmas gift we could ever receive. Through it all, I found time to get out and play Santa for the boys. I loved opening their letters to Santa and deciphering the crooked, misspelled toy requests. Nicks letters were always so detailed and always included some type of charitable donation. He was so sweet. When the clock hit five on the 24th and we were all cleaned up, I locked the door, loaded up the car and headed home. So thankful that business was good, every customer was very happy and I had the strength to finish out the season. Kudos to my employees, fabulous as usual. Everyone would be waiting for me to arrive home to eat dinner. The appetizers were mostly gone by the time I got home. I was used to that. Lor always made so many great appetizers. It would be a wonderful night. A wonderful Christmas! So much hope entering the New Year. I needed rest though. I pushed it too hard. This would be evident on my next visit to Hopkins. That next appointment, was in the first week of January. So Happy New Year it is… goodbye 2000. Not sad to see you go, for the most part.

Next Up: Transfusion