Market Research on Car T Therapy–a paid study for USA residents from Health Union
This opportunity was sent to us by our friends at Social Health Network Blood-Cancer.com is conducting a market research study on behalf of a sponsor,…
Lisa Wiest
Blood cancer DX 1/5/17 (CLL). I am a nobody in the grand scheme. I can choose to be overwhelmed by my circumstances and all the "whys" and "what fors" or I can surrender. I choose surrender. By the grace of God through Jesus Christ, I have become a Child of God. Being on His team is the only sure thing in this life. This is my journey. A peek into my joys, fears, and passions. Come along with me and smell the flowers along the way. ~Lisa You can e-mail Lisa here.
Paid Research Opportunity for UK residents on Social Isolation During the Covid-19 Pandemic
From our friends at Evolve Fieldwork, contact person is Gretel Urdambidelus Rodriguez. The purpose of this research is to better understand your opini…
A New Survey From Our Partners at Health Union for USA Blood Cancer Patients
Health Union is conducting the in America survey to better understand the impact and management of chronic health conditions. Survey responses also he…
Remembering Tom Henry: Pharmacist, CLL Patient, Advocate, Spouse, Father, and Friend one year later
February 9th, 2022 is a day many of us involved in the friendly supportive weekly Zoom meetings will recall. The day we learned our CLL advocate champ…
Watch and Wait, Watchful Waiting, W&W, and Watch and WORRY–what does it all mean?
There are now over 100 types of blood cancer recognized by the medical world with there being three main types: leukemia, lymphoma and myeloma. We kno…
Ask the Doc 2023 event with Doctor Mustafa Allergy/Immunology from Rochester Regional Health System
We were blessed to have Dr. Shahzad Mustafa again from Rochester Regional Head of Allergy and Immunology in Rochester, NY with us on January 21st. Alw…
Happy 2023! New Research opportunity with remuneration from our friends at Global Patients for CLL patients in USA
Hot off the press from our contact Miryam at Global Patients! At Global Patients, we are conducting a new study and would really value your opinion. T…
Does treatment for myelodysplastic syndrome keep you away from your loved ones? A clinical trial highlighted by PatientWing
We are pleased to introduce another group who helps connect people with blood cancers to pertinent Clinical Trials https://app.patientwing.com/campaig…
Follicular Lymphoma Paid Research Opportunity for USA offered by Ancora.ai
Participation involves two parts: Part 1: A video diary recorded over 3 days for 15 minutes per day ($100 compensation) Part 2: 1- hour virtual interv…
Acute Myeloid Leukemia paid USA study by Ancora.ai
Acute Myeloid Leukemia A few details: Participation involves two parts: Part 1: A video diary recorded over 3 days for 15 minutes per day ($100 …
Multiple Myeloma Study Opportunity from ancora.ai–American Patients Only
Our partners from ancora.ai are pleased to bring us another study titled the Multiple Myeloma patients and Caregiver CAR-T Survey Study. Our Blood Can…
Highlighting Fierce with Joy Blogger Susan Hartman during BCAM 2022
In honor of this year's Blood Cancer Awareness Month, I spoke with Susan Hartman about her cancer journey and how she has embraced her circumstances w…
What’s Happening During BCAM 2022
https://powerfulpatients.org/2022/08/18/blood-cancer-awareness-month-2022/#:~:text=September%201%2C%202022%20Congress%20designated%20September%20as%20…
Medical Care Resources for Countries of India and Turkey
We were recently contacted by a group called Clinic Spots who provides resources for individuals looking for doctors and medical care for various fiel…
Paid Research Opportunity for United Kingdom Residents from Evolve Fieldwork for Non-Hodgkin’s lymphoma patients
This time we have an opportunity from Evolve Fieldwork Limited Ltd. for a short (30-minute) survey for United Kingdom folks for 35 GBP compensation fo…
Paid Survey Offer from Global Patients for CLL/SLL Patients in USA
Thank you to Miryam González of Global Patients for sharing this paid research opportunity! Please click this link for this particular study (and send…
CLL / SLL Treatment Side Effects Roundtable Discussion with Friends
This is an excellent video presentation produced by fellow CLL patient Michele Nadeem-Baker of Patient Power for The Patient Story and also group expe…
Blood Cancer Approved Summer Activities
As summer is here now and for some of us, this is the only time we can get out and enjoy better weather, I have compiled a list of safe activities for…
Paid Research Opportunity for United States Multiple Myeloma Patients from Ancora.ai
Ancora is looking for a diverse set of patients to participate in one or more levels of this three part study to understand the journey and to gain in…
The Passion Behind Heal Mary: A group that is taking cancer and treatment seriously and making medical trial options accessible worldwide
As spring is slowly spreading across the land, I always have hope that flowers and leaves will appear again after a long, dry winter. And it is emergi…
A Heartfelt Tribute to Blood Cancer Champion John Soper by Grandson Preston Norman
This post was shared by Christine Soper and Preston Norman. On January 19th, my grandad, "Poppy", John Wayne Soper, departed this life. He was an unbe…
The Evusheld Fourth Vaccine Conundrum
When I got my first dose of Evusheld on February 15th here in Western New York State, the talk about the 2nd booster was a very quiet buzz around here…
Reflections on Bactine and Skin Care from our friend Seymour Brown
One of the great benefits of our Blood Cancer Group and specifically the weekly Zoom chat is seeing members' personalities come out after getting to k…
Highlights on Multiple myeloma
This information was up to date at time of publishing. Encapsulated in this article are some good resources to which you can subscribe to get latest i…
UK: Watch and Wait Research Opportunity
Please let Katie know if you are willing to participate in her research. Limited space! Details below. My name is Katie, and I am doctorate student at…
My Evusheld Experience — I’m just an ordinary person!
I suppose you are wondering what I mean by that title. Well, I'll tell you! Two years ago I cannot even begin to describe how I was spending my time. …
Patient Advocate Foundation: Help is on the way for Cancer Patients in the United States
The information in this article was current as of the time of publication I had the opportunity to meet with Anita Reynolds, the Relationship Manager …
Information for our Providers to prove why Blood Cancer Patients with compromised immunity need Monoclonal Antibodies (United States patients)
This information was current as of its publication date. On Blood Cancer Uncensored Saturday, January 1, 2022 weekly meeting, we discussed the frustra…
Christmas Pistachio Pudding Pie
Here's a simple Christmas pie you might even be able to put together today to eat tomorrow. My favorite store Aldi usually has a pie that reminds me o…
Rowing My Boat with Grace
As I reflect on another year gone by and my second year working with Blood Cancer Uncensored, I want to draw some conclusions that for me, are persona…
Asciminib (Scemblix) STAMP Inhibitor for Certain Chronic Myeloid Leukemia Patients Approved by FDA
This information is current as of the publication date. This news is a result of individuals like you and I participating in a medical drug trial. Thi…
Persistence during a health pandemic and an unexpected blood cancer diagnosis–we are our best advocates when not feeling well!
Introducing blood cancer friend Tamsin Wheatcroft as she shares with us on this video how she learned of her CLL diagnosis. Join the blood cancer supp…
Introducing Blood Cancer Hero Jessica Kuhns and her remarkable son Jaden!
On October 13th, Blood Cancer Uncensored had the opportunity of interviewing Jessica, a positive, energizing lady and her accomplished son Jaden. Jess…
Compensated Study for a United States male only patient with acute myeloid leukemia for patient experience research-continue reading for specifics of study!
This information is current as of time of publication. Ancora.ai is looking for a male person of color (POC) diagnosed with acute myeloid leukemia to …
Car T therapy approved by FDA for adults with relapsed or refractory B-cell precursor acute lymphoblastic leukemia (ALL)
This information was current at the time of publishing. The advancement of Car T therapy for the blood cancers is definitely something to keep watchin…
Will Regeneron Become More Available in the USA as a Result of the Feds Stepping in on Distribution? #ThisIsBloodCancer
This information was current and correct as of the publish date. A friend sent me this article this morning about Florida and the other states who wer…
Regeneron monoclonal antibodies to the rescue? My Florida experience! #ThisIsBloodCancer
Lisa Wiest explains how having blood cancer made her eager to get injected with COVID19 monoclonal antibodies. Blood Cancer Uncensored is pleased to s…
Wear Red or Your favorite blood cancer shirt for BCAM!
This is the third event for the month. The challenge is to post a pic of you, or you with your family or friends all wearing a red shirt OR a blood ca…
Blood Cancer Uncensored Wants YOUR Blood Cancer Video or Written Story!
Blood Cancer Uncensored is pleased to support the International #thisisbloodcancer campaign. Please consider sharing your story of what blood cancer m…
September is Blood Cancer Awareness Month!
Who on this group does not know they have blood cancer? Or that their loved one has it? I realize there are folks on our group who are trying to get i…
Remdesivir or Regeneron–What is the Difference and can WE get these life saving Covid 19 treatments?
This is a simple post to explain the difference between these two drugs being used to combat Covid. Gilead Sciences' REMDESIVIR Anti-viral drug used i…
Booster Shot Approved by FDA for Immunocompromised and Organ Transplant Americans…United Kingdom to begin boosters next month!
Here it is folks! I suggest you email or call your oncologist or hematologist to get a letter to prove why you need this booster and schedule the appo…
A Booster Covid Vaccine for the United States’ Immunocompromised Folks Coming Soon?
We were waiting on pins and needles to see if it would be approved by now, but we're not quite there yet. Hopefully by week's end. Studies are still b…
Dogs and Cats and Illnesses-Can my pet make me sick and in turn what can I give to my pet?
In today's uncertain climate, and on top of it all having blood cancer, you might be re-evaluating things you have always done, wondering if they are …
Help on the horizon for Polycythemia Vera with rusfertide (PTG-300) as a possible option to reduce erythrocytosis in some patients?
This sounds like something we need to keep our finger on. Looks like a huge breakthrough and we will be looking forward to the 2021 EHA Annual Congres…
Ham and Cheese Quiche
This one is from allrecipes.com and adjusted by me slightly. The actual recipe is posted at the bottom of this page. The things I changed are in bold.…
Navigating the Covid-19 Vaccine Debates and Concerns of Efficacy for Blood Cancer Patients in the United States
UPDATE: The FDA has made a new decision July 31, 2021 on the use of REGENERON-COV in that some of us who are considered vulnerable to SARS-CoV-2 virus…
Hummus made with Beet and Ricotta
I think I am going to really enjoy making this recipe that our friend Tom the CLL Pharmacist has shared with the group. It looks like my food processo…
Encouraging news with CAR T treatments in childhood cancers!
Here is some very encouraging news about CAR T therapy as an option for children with Acute Lymphocytic Leukemia (ALL) and also the multiple myelomas.…
Toxic Cancer Care? What a horrible prospect!
Here's an interesting seminar for the Americans on the high cost of medical care. Those with government provided health care need not apply! https://w…
Veggies for All–Summer Grilling!
This is one I think we can all enjoy. Perhaps even the kids if we put ranch dressing on it! I think the secret to tasty grilled veggies is in the mari…
Chronic Myeloproliferative Neoplasms
In keeping with Blood Cancer Uncensored's overall goal of providing support for all blood cancer patients and support people, this is an attempt to pu…
Tips for Managing Neutropenia
Recently, questions were raised about diet when diagnosed with neutropenia. This summary is a result of the need for a user friendly guide for what to…
Happy One Year Anniversary Blood Cancer Uncensored!
Today is the date that marks one year of Blood Cancer Uncensored as a website and Facebook Group and Page. Last Saturday, we held a ceremony and prese…
Dandelion Corn Bread
There are a few things I love about spring! One is things coming back to life after a cold, barren winter, another is all the beautiful birds coming b…
Confessions of a Closet Sneezer
I admit it. The Covid pandemic has caused me to behave in ways I never would have thought possible. I snapped at a small child for sneezing near me! I…
An Easter Spread
I was going to make deviled eggs yesterday for church. I use farm fresh eggs. They just don't peel well after being boiled! And I, personally, was rea…
Playing in the Poison Ivy
On a recent Zoom chat, I was asked to give my personal update, and all I could think of was the poison ivy I'd recently contracted. Here it is, MARCH …
Grappling With The Fear
I feel like I've been beat up, pummeled, and bruised by this world. CLL was not the first thing that happened to me that threw me for a loop. I have h…
Hawaiian Chicken
I saw this recipe for Hawaiian Chicken on Facebook and decided to check it out! I hope you enjoy it if you try it. The vegetables are my favorite supe…
Letters to Mom
This is more or less written for me as I cope with the grief of the loss of my mom last month. I also wanted a way to remember my childhood, and was t…
Finding Christmas
What a strange year 2020 has been! Prior to the beginning of this year, I believe many of us had plans, hopes, and resolutions which quickly faded as …
Perspective in the Midst of Troubles
I have never seen really, really extreme weather where I live. Yeah, I was around for the Blizzard of 1977 in Western New York, but I was a kid and it…
Healing is a Journey
I cut my finger a few days ago. I was riding my bike....no, I was doing archery....no, I was skydiving...no, I was fixing something in the house. All …
Riding A Bike
This is not a picture of me. But perhaps it could be. Recently, my husband bought used bikes for both of us. We are having such a wonderful summer, ev…
Catastrophic System Failure-Why the Support Group Concept is so Important
This life is so strange. We hopefully live life as healthy individuals at least until age 40 or age 50, but inevitably, these bodies break down. Then,…
The Fatal Sip
My friend texted me in a panic one morning. She was asking for prayer as she had drunk some rancid cream. She followed that text up with another that …
The Itch from Within-Hyper IgE Syndrome or something else?
This is a very serious post. I do not have any jokes about pets or condiments this time. As I felt sickness overcome me three times in the last 2 week…
The View from Above
We enjoyed some well-deserved time off this week. It is a beautiful summer here in Western New York, and the weather has been beyond excellent. Some s…
Ashwagandha Use in the Fatigue Fog?
I am not a science kinda gal. I like many things about science, but not necessarily digging deep into the labyrinth of technical jargon that goes alon…
Facing the Son
I have a serious problem lately! I keep buying salad dressings! I do like to eat salad, but this is a lot of dressing. In the last week, I have bought…
Holding on Too Tight
We all have them. Memories of traumatic events we wish would just "go away". In my field of work, I hear the phrase Post Traumatic Stress Disorder way…
Matching Socks
I have many flaws. Perhaps some would call my problem a little touch of OCD. I spend a lot of time on something, trying to get it "just right", and th…
Facing your giant
There are things in life that have no apparent way out. All of the therapists on the planet, no matter how hard they try to solve the problems, cannot. We all need help. We need a Savior bigger than the giant.
Anniversaries
Anniversaries! Why do we care so much about them? I'm not talking about the wedding kind, that's a no-brainer. I am thinking of the ones that signify …