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Revlimid
4/11/2022 received first once a week for eight weeks (Daratumumab an anti-cancer monoclonal antibody which binds to the CD38 which is overexpressed in multiple myeloma and binds to other types of cells such a red blood cells and kills or allows immune system to destroy the cells.) Darzalex Fastpro 1800 mg (belly shot like Velcade 16 shots with the first 9/17/2018 and with Christmas break the last 1/21/2019 from Pine Ridge Florida Cancer Specialists Dr. Newman). Dr. Sher prescribed that I begin treatment because my lambda light chains had risen from where they had stabilized in the low 70s from my last Velcade and Dex treatment January 21, 2019 to 120 (normal range for Lambda light chains is 5.71-26.3 mg/l) Dr. Newman at Florida Cancer Specialists confirmed Dr. Sher's recommendation and scheduled my treatment.
The treatment goes like this, I give blood that is tested before I can receive treatment. When I am approved, I receive a temporary port and receive premeds in the temporary port a shot of Benadryl 25 mg (to prevent anaphylaxis) and a shot of Solu-Medrol 60 (steroid). Then they set a timer for 30 minutes to see if I react. They then administer the Darzalex Fastpro 1800 mg (belly shot like Velcade - Bortezomib 16 weeks starting 9/17/2018 and with Christmas brake last shot 1/21/2019). Then they set a timer for 30 minutes to see if I react. Then I can leave. Before I go for treatments I take prescribed Montelukast 10 mg. The first time treated they gave me an IV before the premeds and Darzalex. No IVs except once mid way through every two weeks.
Darzalex treatments go eight weeks once a week and then eight treatments of every other week and then once a month for unprescribed, for me, duration. Some people have received treatments for 25 months and up to 40 months. Darzalex does not cure multiple myeloma.
My Darzalex treatment schedule every week: 4/11,4/18, 4/25, 5/2, 5/9, 5/16, 5/23, 5/31 (8th and last for every week). I saw either Dr. Newman or one of his two assistants Stephanie Chandler or Erin Conniff who see my blood tests and are only a few exam rooms from Dr. Newman if any issues present every other week during my every week Darzalex and every other treatment during the every other week cycle.
My Darzalex treatment schedule for eight of every other week: 6/6, 6/21, 7/6, 6/19, 8/1 (8/1 started Revlimid (lenalidomide a more potent molecular analog of thalidomide which inhibits angiogenesis, tumor-secreted cytokines and tumor proliferation through induction of apoptosis.) 15 mg one a day for 21 days with Dexamethasone 12mg (at home on day 1, 8,15, 22)
8/15, 8/29, the eighth treatment will be around the 17th of September. Then if Dr. Sher and Dr. Newman prescribe, I will go on Darzalex once a month.
Accredo Health Group paid $17,742.97 for 21 tablets (one 21 day daily cycle for my first 21 pills, and I copaid $672.32. I have applied for copay relief based on my income with the Florida Cancer Pharmacy - Rx To Go. I am scheduled to start my second 21 day Revilmid on August 29.
7/22/2022 10:15 Express Scripts called to say I was approved to receive Revlimid until July 21, 2025.
For three months starting August 1, 2022 Revlimid 15 mg for 21 days then off for seven days and Dexamethasone 12 mg days 1,8,15, 22 with the 1 starting when I start Revlimid. Both medications are on a 28 day schedule. Call about Revlimid. Download app on phone REMS Companion. Take about a survey every month on phone app. Check with Dr. Newman about a low dose aspirin. If problems with next month prescription, three days before call 1-877-732-3431 and press 2. Talked to nurse Jennifer licensed in Texas. Co-pay $673.32. Talked Wednesday 7/27/2022. Accredo Speciality Pharmacy.
8/23/2022 just received a call from Jennifer about copay relief. I am eligible for $0.00 copay starting with my second dose August 29 for 21 days. The prescription will come from Rx Crossroads - Mckesson Pharmacy (Health Mart - a Mckesson pharmacy operates more than 3,200 independently owned community pharmacies in the US.
ScriptSave Wellrx for full drug prices
https://www.wellrx.com/
Darzalex Fastpro $8,423 for 15 doses at Winn Dixie and $9,104 Walgreens
Velcade $1,615 for one dose at Winn Dixie
Revlimid $14,765 for 21 doses at Winn Dixie. Goes off patient January 31, 2026
Pomalyst $20,046 for 21 doses at Winn Dixie
Melphalan $456 for 50 doses at Winn Dixie
Ninlaro $11,515 for 3 doses at Winn Dixie
Rituxan $6,620 QTY 70 • 10 MG/ML • VIAL Winn Dixie
Venetoclax or VENCLEXTA
Glossary of Multiple Myeloma Terms - Page on Wiki
50
Good medicine - Acyclovir 400 mg,, Meclizine 25 mg. for dizziness,
Treatments for patients with AL amyloidosis include various medications:
Chemotherapy drugs
Immunotherapy drugs
Steroid medications
From Cleveland Clinic
What are the stages of cardiac amyloidosis?
Stage I (TnI <0.1 ng/mL and NT-proBNP <332 pg/mL), stage II (TnI >0.1 ng/mL and NT-proBNP >332 pg/mL), and stage III (TnI >0.1 ng/mL and NT-proBNP >332 pg/mL). Stage I (TnI <0.1 ng/mL and BNP <81 pg/mL), stage II (TnI >0.1 ng/mL or NT-proBNP >81 pg/mL), and stage III (TnI >0.1 ng/mL and NT-proBNP >81 pg/mL).Jan 17, 2019
Velcade, Darzalex Fastpro, Revlimid (lenalidomide) , Pomalyst (a derivative of thalidomide marketed by Celgene and is an anti-angiogenic approved by FDA 2013), Melphalan, Ninlaro (Ixazomib capsules used in combination with Revlimid)
Look up Venetoclax and Proteinuria and creatinine and transesophageal Echocardiogram
Blood results: Troponin BNP
Gabapentin
Melphalan
Chemotherapy
Amyloidosis and Kidney Disease
Lab Results Tracker from Revlimid
Amyloidosis Group Webinar 5/21/2022 Dr. Melissa Lyle Cardiologist from Mayo Clinic in Jacksonville
Dr. Alfredo Quiñones-Hinojosa, a Jacksonville Mayo Clinic neurosurgeon, on Season 1 Episode 2 in 2020 of The Surgeon's Cut
Amyloidosis AL associated with immunoglobulin M (IgM) paraproteinemia is rare and is a subset of Amyloidosis AL patients. When a whole paraprotein can be identified, IgG and IgA are mush more common than IgM. 20% frequency of IgM paraproteinemia among patients with monoclonal gammopathy of uncertain significance (MGUS). Only 50 patients identified over 22 years at Mayo Clinics. Al amyloidosis associated with IgM paraproteinemia: clinical profile and treatment outcome
IgM AL Amyloidosis: Delineating Disease Biology and Outcomes with Clinical, Genomic and Bone Marrow Morphological Features 2019
Levels of remission: developed by International Myeloma Working Group (IMWG)
PR - Partial Response - is less favorable response to treatment than stringent complete response
VGPR - Very Good Partial Response is better than SD Stable Disease
mCR - Molecular Complete Response
CR - Complete Response - No detectable evidence of tumor in the body
sCR -stringent complete response
sFLC - Serum Kappa and Lambda Free Light Chains
PFS - Progress Free Suppression
IRR — incidence rate ratio · IRR — Infusion-Related Reaction ·
QOL - Quality of Life
Blood Results after starting Darzalex Fastpro as of eight weekly treatments from 6/6/2022 Florida Cancer Specialists blood tests
RBC 3.88 Low (4.30-6.30) - Red Blood Cell count (erythrocytes)
Hgb 12.4 Low (14.0-18.0) - hemoglobin test - protein in red blood cells that carries oxygen and transports carbon dioxide back to the lungs.
HCT 37.3 Low (41.0-51.0) Hematocrit - packed cell volume (PVC) how much of your total blood volume is comprised of red blood cells.
Mcv 96 High (80-95) - mean cell volume - average size of red blood corpuscle (cell)
Gran% 79.8 High (39.0-78.0)
Lymph% 11.9 Low 15.0-40.0)
ANC 7.74 High (1.50-6.50) Check - measure neutrophils a type of white blood cell that helps fight infection.
GRAN# 7.73 High (1.50-6.50) Check - Granulocytes - about two-thirds of white blood cells have granules (small particles) in them. Formed in bone marrow and short-lived and highly mobile.
Lymph# 1.15 Low (1.20-3.40)
Sulfonamide, Sulfa drugs or sulpha drugs - first broadly effective antibacterial began as Prontosil in 1932 from Bayer AG patented in 1935. Lack of testing led to 100 poisoned and that led to passage of the Federal Food, Drug and Cosmetic Act of 1938 a set of laws that gave the FDA authority to oversee the safety of food, drugs, medical devices and cosmetics. I was given Sulfa drugs for scarlet fever when I was five in 1946 and quarantined.
12/8/2021 Dr. Newman suggested that I get a colonoscopy every three years and an endoscopy. snewman@flcancer.com
You can self refer, just call for an appointment at one of the three Mayo Clinics, (Rochester, MN, Phoenix or Jacksonville - 6 driving hours away). Go to https://www.mayoclinic.org/departments-centers/spine-care/sections/doctors/drc-20426386 and see the 80 doctors available for spine care with 21 of the 80 in Jacksonville. You can even pick which doctor to request an appointment. I have been going to the Jacksonville Mayo since July of 2018. We stay at the Holiday Inn Express at 4791 Windsor Commons Ct., Jacksonville - 904/421-7000. They have a free shuttle to the Mayo Monday-Friday 6 am to 6 pm. The Holiday Inn is located a parking lot away from a Ruby Tuesday and at the end of a plaza and next to a Publix. The plaza has a pizza place and a Chinese place and a gas station at the far end.
Daratumumab
For Darzalex Fastpro See Darzalex Side Effects
- For males who have female partners who can become pregnant, there is information in the lenalidomide, pomalidomide, and thalidomide REMS about sperm donation and how lenalidomide, pomalidomide, and thalidomide can pass into human semen
Distribution of pomalidomide into semen of healthy male subjects after multiple doses
IV infusion once weekly one to eight weeks and then every two weeks for 9 to 24 weeks and then every four weeks for up to 24 months.
$6,500 per infusion
.
Revlimid $23,317 for 28 capsules.
Ninety-Minute Daratumumab Infusion is Safe in Multiple Myeloma 2018
Safety of ninety-minute daratumumab infusion 2021, 90 minute infusion
Safety, tolerability, and response rates of daratumumab in relapsed AL amyloidosis: results of a phase 2 study 2020
Dr. Steven B. Newman
August 18, 2015
Florida Cancer Specialists & Research Institute (FCS), is pleased to announce that Steven B. Newman, MD, has joined Florida Cancer Specialists and will be seeing patients at the FCS cancer center at Napa Ridge, located at 6360 Pine Ridge Road – Suite 201, Naples, FL 34119.Dr. Steven B. Newman has over 30 years experience as a hematologist/oncologist in private practice and at major academic medical centers. He has provided executive level physician leadership at a number of hospitals during his career. Before joining Florida Cancer Specialists, Dr. Newman was the senior partner at Hematology-Oncology Associates of Northwestern Medicine in Chicago, IL; he served as the Director of Clinical Services for the Division of Hematology/ Oncology and Executive Director for Clinical Affairs at the Sylvester Comprehensive Cancer Center, University of Miami, Florida and prior to that, he spent 15 years as the managing partner of Hematology-Oncology Associates of Illinois, located in Chicago. In the academic arena, he was an associate clinical professor at the University of California- Los Angeles, Department of Medicine and an associate professor of medicine at Northwestern University Feinberg School of Medicine in Chicago, Illinois. Published extensively in such prestigious journals as Journal of Clinical Oncology, Cancer, Bone Marrow Transplantation, Gastroenterology and International Journal of Radiation Oncology and Biophysics, Dr. Newman has also given clinical research presentations at the American Society of Clinical Oncology, as well as several regional conferences for Blue Cross of California Medical Advisory Panel; he also serves on the Medical Policy and Technology Assessment Board for Anthem.
Daratumumab and Hyaluronidase Fihj (Subcutaneous Route)
January 4 and 5, 2022 Mayo Clinic Dr. Sher Results
Two types of amyloidosis presenting in a single patient: a case series 2019 Mayo Clinic Researchers
ules
Treatment of Immunoglobulin Light Chain Amyloidosis: Mayo Stratification of Myeloma and Risk-Adapted Therapy (mSMART) Consensus Statement Mayo Clinic 2015 Dr. Sher one of authors
Serum free light chain ratio is an independent risk factor for progression in monoclonal gammopathy of undetermined significance 2005
About Multiple Myeloma
Outcome in systemic AL amyloidosis in relation to changes in concentration of circulating free immunoglobulin light chains following chemotherapy.
Outcome of AL amyloidosis after high-dose melphalan and autologous stem cell transplantation: long-term results in a series of 421 patients
Primary localized gastric amyloidosis: A scoping review of the literature from clinical presentations to prognosis 2021
Bladder
New case of secondary bladder amyloidosis with massive hematuria—role of intravesical instillations with dimethyl sulfoxide 2019
Spontaneous remission of untreated primary amyloidosis of the bladder after transurethral resection biopsy: a case report and literature review 2020
Primary localized amyloidosis presenting as urethral stricture: An important differential diagnosis on frozen section 2020
Amyloidosis of the Urogenital System 2011
Imaging Evaluation of Amyloidosis of the Urinary Tract and Retroperitoneum 2011
A Visual Scale for Improving Communication When Describing Gross Hematuria 2021
Darzalex Patient Blood-Type_ID_Card.pdf
darzalex-pac_v2_04022022.pdf Darzalex Patient Card number 2
Hematuria Grade - I-V with word descriptions and Kappa p-value)
Deep Response in Multiple Myeloma: A Critical Review 2015
Venetoclax in Immunoglobulin Light Chain Amyloidosis: Is This the Beginning or the End? 2020
Blood Transfusion Management for Patients Treated With Anti-CD38 Monoclonal Antibodies 2018
Stress Response Is the Main Trigger of Sporadic Amyloidosis 2021
Anxiety and depression among AL amyloidosis patients: the role of cardiac symptoms 2021
Circulating amyloidogenic free light chains and serum N-terminal natriuretic peptide type B decrease simultaneously in association with improvem3ent of survival in AL
Biomarkers in AL Amyloidosis
Though Amyloidosis Symptoms Vary Widely, These Are Some of the Most Common Ones
Vertebra collapse due to primary amyloidosis causing neurological compromise 2013
Monoclonal Gammopathy of Undetermined Significance
Cardiac amyloidosis : An Update on diagnosis and treatment
There are 2 parts of the human nervous system: the central nervous system (CNS) and the peripheral nervous system (PNS). The CNS is located in the skull and vertebral canal of the spine, and it includes nerves in the brain and spinal cord. The PNS is made up of all remaining nerves in other parts of the body.
Lambda Numbers Page
Multiple Myeloma Page
Amyloidosis and Hearing Problems
Amyloidosis of the Nasopharynx: An Unexpected Cause
of Unilateral Middle Ear Effusion 2011
Neil McCluney1, Muhammad Shakeel1, Andrew Dallas1, Akhtar Hussain1 and Andrea Chapman2
Amyloidosis of the Nasopharynx: An Unexpected Cause
of Unilateral Middle Ear Effusion
Neil McCluney1, Muhammad Shakeel1, Andrew Dallas1, Akhtar Hussain1 and Andrea Chapman2
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BMJ Case Rep. 2014; 2014: bcr2013200753.
Published online 2014 May 13. doi: 10.1136/bcr-2013-200753
PMCID: PMC4024549
PMID: 24825551
Case Report
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Amyloidosis in bilateral external auditory canals
Takahiro Hosoi,1 Gurpreet Dhaliwal,2 and Yasuharu Tokuda3
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Amyloidosis in bilateral external auditory canal obstructing masses - 2018
Sethi S. Paner A, Okwuosa T, more
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Eustachian Tube Dysfunction in Patients with Localized Amyloidosis of the Nasopharynx and Eustachian Tube
Anna-Christina LauerClaudia QuastDina LigumHolger Sudhoff
Archives of Otorhinolaryngology-Head & Neck Surgery. 2018;1(3):3
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Amyloidosis of the external canal and middle ear: Unusual ear tumor
Heitham Gheriani and Rajesh Tewary and Timothy J. O'Sullivan 2007
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Localised sinonasal amyloidosis presenting with unilateral hearing loss: a case report and review of the literature -2023
Melanie Suseeharan from East Kent NHS Hospital Trust, Kent, UK
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Two cases pf amyloidosis on the external auditory canals - 2003
Naoki Ashimori, Yasuhiro Hayashi, Tomoyski Hoshino
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Amyloidosis presenting as a mass abutting the tympanic membrane - 2019
Kevin Chow, Vivian F. Kaul, Maura K. Cosetti
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