DIAGNOSIS OF "PRE-CANCEROUS" CONDITION - MBL

Laura_67

Hello - I just joined this network because I thought I could benefit from reading about other people's experiences, especially during early diagnosis.  I've Googled and learned a lot about MBL and CLL test results and numbers. I might not even eventually have CLL, but all of my test results so far make me feel like I might be on my way.  I would appreciate any comments or sharing of experiences people have had when they first found out they might have CLL.

In August 2020 , because of fatigue, constant body aches, and just generally feeling lousy most of the time, my doctor ordered a CBC with differential blood test.  Lymphocytes were 49.6% and 5,190, and have steadily climbed since then until I was diagnosed with Monoclonal B-Cell Lymphocytosis. My WBC is currently at 13,410 and Lymphocytes are 61.4%, number of Lymphocytes is 8,130, but I have had symptoms that haven't been figured out by my doctor yet, like extreme fatigue, weakness, night sweats, sore throat, insomnia, and just that dragged down feeling like you get when you have a bad hangover. Started about 3 months ago and is now every day, which makes it difficult to do anything. My doctor says they don't diagnose CLL until Lymphocytes are at 13,000, but there is no explanation for the symptoms I have. FISH test showed "Abnormal signal patterns consistent with mono-allelic deletion of 13q in 88/200 (44%) of cells analyzed". This means that part of chromosome 13 is missing, and when that happens it can affect cancer growth. Because of all this, I feel that I will eventually have CLL and my worry is that I could have it now because of these symptoms but treatment will be put off until Lymphocytes are higher and they don't like to test more than every 6 months.

SantaZia

DIAGNOSIS OF "PRE-CANCEROUS" CONDITION - MBL

I have been recenty diagonised with CLL.  I don't have your symptoms, but I have an annoying itching.  My FISH came back an un-mutated IGH V rearrangement. The IGH V allele identified was 1−69*06.  I had a negative Trimosy12 and no delection of 6g, ATM, 13g14 or TP53.  I have ordered a couple of books you might be interested in.  They are very technical, but it seems that you have been doing your own research and can handle these.  One is Chronic Lymphoytic Leukenia Clncs Review Articles Jenifer Brown hard copy, the other is Chronic Lymphocytic Leukemia: Pathobiology, B Cell Receptors, Novel Mutations, Clonal Evolution Kaur, Prabhjot paperback, Both are on Amazon for around $25 I am also consulting with other university cancer centers UNM Cancer and MD Anderson.  The reason to consult with university hospitals is to have additional opportunities for treatment modalities, clincial trials and protrocals that a local hosiptal might not tell you about.  There are so many different types, subtypes and related lekemias that you want to have as much knowledge as you can get on the diagonosis and treatment.  Good Luck!

SantaZia

DIAGNOSIS OF "PRE-CANCEROUS" CONDITION - MBL

I forgot to mention that there are regional CLL Society Support Groups.  They meet monthly viturally. In NM I am participating in one out of Denver, only 12 folks online.  Also I am scheduled for a CT with contract scan of my brests and sounding lympt nodes.  Besides that I have had lots of testing to determine CLL. I recently published an article on my diagnosis journey in my monthly collumnn. I will paste it below. 

The challenges of medical diagnosis

 

• Santa Fe New Mexican
• 26 Sep 2021
• Andy Winnegar has spent his career in rehabilitation and is based in Santa Fe as a training associate for the Southwest ADA Center.

Andy Winnegar Understanding Disability

Medical diagnosis is known as both an art and a science. Now, with access to medical information on the internet, patients have joined in the investigative process. But that can be a problem, especially if a medical study or report is misunderstood.

For instance, the anti-parasitic drug ivermectin has been approved by the U.S. Food and Drug Administration for use in animals and people.

An article published in late 2020, which was picked up by the media, indicated the broad-spectrum antiparasitic had demonstrated success in a trial with antiviral activity against a number of DNA and RNA viruses, including the coronavirus. The article went on to explain that despite this promise, the drug has not yet been proven effective in fighting a virus on a living organism.

Calls to poison control centers about ivermectin exposures have risen dramatically in recent months, jumping fivefold since in July, as people have used it to fight COVID-19, according to researchers with the Centers for Disease Control and Prevention.

The FDA posted warnings on its website alerting the public not to take the drug to prevent or cure COVID-19.

News coverage of public health issues is important, especially during a crisis like the coronavirus pandemic.

But news reports are brief and cannot provide all research details.

Johns Hopkins Medicine, like many hospitals, has online information on health conditions and treatment with the warning, “Do not self-diagnose.”

My family doctor has listened patiently to me these last few months as I have discussed diseases I have read about that include symptoms similar to my nightly itching issues.

The other day I asked my doctor, “What about lupus?”

“No,” he said with a laugh. “It is never lupus.”

He was referring to House MD, a TV show I hadn’t seen.

Later I found the YouTube video, Every Time It’s Not Lupus! — youtube.com/watch?v=QmP4DJO6IzE — with clips from the TV show on the many wrong lupus diagnoses.

In 2017, a study showed 21 percent of patients who sought a second opinion at the Mayo Clinic left with a completely new diagnosis.

A doctor in a specific area of medicine may also “pull” a diagnosis toward their own specialty or refuse to diagnose a condition outside of their specialty, according to a 2003 study published in the Journal of Biomedical Informatics.

To determine a diagnosis and treatment of a disease, a medical professional will order laboratory tests and analyze results, review a patient’s family history and perform a physical examination of the patient.

Early diagnosis and treatment of disease can be lifesaving and reduce treatment costs.

But many diseases have similar symptoms, and as more information is learned about a condition, a diagnosis may change.

A friend who was diagnosed as having lupus a few years later learned, after a new doctor ordered additional testing, that she actually had Lyme disease.

And sometimes the disease is detected incidentally.

My nephew David, a neurologist, recommended I have more testing after my doctors agreed my diagnosis of shingles earlier this summer may have been wrong.

After an MRI on the brain, a radiologist suggested further evaluation with whole-body bone scanning.

After that, a seasoned medical oncologist ordered a CT scan and additional bloodwork. He diagnosed chronic lymphocytic leukemia. The process of diagnosing CLL usually begins with a routine blood test called a complete blood count.

The average age of someone diagnosed with CLL is 71.5, my age.

Although my father, 96, has not had the diagnosis, he has had severe anemia, shortness of breath and fatigue for over five years, which are all symptoms of CLL.

Approximately 10 percent of individuals with CLL have a family history with the disease or a related lymphoproliferative disorder.

There are two different kinds of CLL; one grows very slowly and the other grows faster and is a more serious disease. Between these two types of CLL, there are several subtypes that differ at the genetic level.

Testing and time will tell what type is mine.

SantaZia

MBL & CLL Educational video

https://cllsociety.org/2020/04/cll-society-webinar-archive-just-diagnosed-what-do-i-need-to-know/