Still here...I have PV and ET with the JAK2 mutation. My blood work has been really low, but my hematocrit has started to rise again. It's getting close to 45. It...reactionscomments
CLL you picked the wrong person...I had a sore throat during COVID. Couldn't see many doctors in person back then. My ENT did test after test, and I finally said I'd know if I'd had...reactionscomments
Embracing Blood Cancer...There comes a time when we realize that some things in life are not working. For me, that deep awakening occurred following a series of traumatic episodes. Strangely enough, a...reactions2comments
Chronic lymphatic leukaemia ...Hi my husband just found out today he has chronic lymphatic leukaemia...reactions3replies
Overcoming Obstacles...It took me 6 months of training to prepare my mind, as well as my mind and body for a race. I’m so glad I signed up, and I must...reactionscomments
Breaking Down Blood Cancer Awareness in September...September is Blood Cancer Awareness Month. If you are on this site, you likely either have blood cancer or know someone who does. On thing is for sure: we all...reactions1comment
Living with Blood Cancer: Overcoming Judgement...Have you ever felt judged for having cancer? There’s a red flag I’ve noticed that tells me when a conversation might not go over well. It starts with a simple...reactionscomments
Understanding Non-Compliance: My Journey with Blood Cancer...Dealing with blood cancer is challenging enough without facing misunderstandings and misjudgments. Here’s my story of being perceived as non-compliant to treatment, and what I did about it. When I...reactions2comments
CML...Hi, I was diagnosed with CML December of 23! What a shock it was when my doctor told me! Never thought I would be in the situation that I am...reactionscomments
Embracing a New Normal by Overcoming Feelings of Failure...As cancer patients, we often have to come to grips with “the new normal.” For us, it starts soon after diagnosis. Eventually, and probably, the sooner the better, we have...reactions3comments
My Message of Hope...This year, I had a slightly different attitude towards blood cancer awareness month, specifically CML Awareness Day (September 22), and decided to do an Instagram live about it. On my...reactionscomments
CAR T and the Fatigue Fallout...When I was going into the trial for CAR T-cell therapy, I knew it required a seven-day hospital stay. I told the admitting nurse that I would be out of...reactions1comment
Active 6 days agoDid you experience fatigue after receiving CAR T-Cell Therapy?..."My strength slowly returned at what felt like a snail’s pace. I remember still being so fatigued at my thirty-day appointment and asking my oncologist when it would let up...reactions5repliesSide Effects
What Do You Have To Prove?...As the youngest sibling, I spent a lifetime trying to keep up with the accomplishments, expectations, and approval of my older sisters. As a mom, I have found myself wanting...reactionscomments
Paid research opportunity for cancer patients and their family caregivers!...NYU Culture, Emotion, and Health Lab are inviting cancer patient-family caregiver pairs to participate in an online research study to share their cancer-related experiences in the United States. They are...reactionsrepliesResearch & Clinical Trials
The Importance of Sleep...We sleep for one-third of our lives. That’s how important sleep is. However, Dr. Marishka Brown, a sleep expert at the National Institutes of Health, points out that sleep is...reactions3comments
Anyone aware of possible link between CLL and AVN of hip?...I have had CLL for 5 years. I was treated for 18 months with Imbruvica. I requested to discontinue the drug due to severe bone and joint pain. Discontinuing Imbruvica...reactions3repliesLeukemia
Being diagnosed with a rare Blood Cancer....It was enough being diagnosed with Lupus and Sjogrens and Fibromyalgia and RA. I pretty much knew I've had these since a very young child. Loosing loved ones n friends...reactions2repliesMental HealthDiagnosis
Newly Diagnosed with Polycythemia Vera...Last month, I received an email from my doctor (I'm in an HMO) that flatly stated my blood work showed I had a JAK2 mutation, indicating I have PV and...reactions3comments
