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Real members of MyLymphomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Before The Diagnosis, Did You Were Feeling Weak Or Tired Than Normal Along Before (maybe Years Before)?

A MyLymphomaTeam Member asked a question 💭
New Jersey, NJ

I had been feeling not very energetic for so long, that I got a mild depression. I wonder if Lymphoma was cooking.

December 22, 2023
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A MyLymphomaTeam Member

Oct 2006 it started...then 3 years and dozens of specialists.....multiple pneumonias 6, and extreme fatigue, foggy brain, dizzy insomnia...stepped down from my Corporate GM position in 2009. No one in Buffalo, NY did a CBC in the 3 years. Finally found a good doc in New Mexico that found the Waldenstoms in 48 hours after the blooddraws. Dr William Anderson. Top notch Internal Practice. Dr Ben Downey Austin, TX. got me the Chemo and drugs. Cancer nearly undetectable now.
Had to initially accept clinical drug 11 months due to my insurance coverage refused to cover me...oral clinical trial 11 months..nearly ended me. The Docs got me off it and in the right programs. Cancer Foundations paid my way. Thanks to Dr Downey.
2nd round of Rytuxan 8 years later . Got Covid while on 2nd round. Emphysema in lungs now non smoker, lifetime triathlete in top notch condition my entire life. I'm a mess now. But cancer under excellent control. Great oncologists. Excellent oncologists. 17 year survivor. Now on to lungs and COPD from Covid in Feb 2020. 4 years and tears of a new hell. My wife is a Registered Nurse. We met in high school and we found each again just as I was diagnosed. We married as we had planned in high school. Fate is a crazy thing. She has taken care of me since. I can never repay her. I'm strangly a unlucky lucky man. I traveled all over Europe n Asia, piloted aircraft, ran thousands of miles, bungi jumped, owned franchises. Lived a full life by 48 years old. 8 high school letters. Iron man triathlete. High school BasketBall Hall of Fame induction. Ran track in college, got 2 degrees. And married my first love. I'm 62 and still circuit train 40 minutes at the gym ever other day.
16 % bmi ...I will not give up, ever. Doc says heart and body of an athlete. Except for the damn lungs and cancer.
You all hang tough. I'm with you.

December 25, 2023 (edited)
A MyLymphomaTeam Member

I have no obvious symptoms of my Follicular Lymphoma at all. Full of energy, no night sweats, no swollen glands anywhere other than the tumour in my Mesentery. All blood tests and tumour markers normal despite a small presence in my bone marrow.

December 25, 2023
A MyLymphomaTeam Member

Yes, but I attributed it to my heart condition. I have hypertrophic cardiomyopathy. But how I found lymphoma is through my salivary glands. I learned in 9th grade that the taste of your saliva is reflective of your blood composition. When saliva tastes fruity, it means high blood sugar. My saliva tasted metallic, so I asked my doctor for a blood work up. And there it was…the cause for all the symptoms that I blamed on my heart, my weight, my gender, my age…

December 25, 2023
A MyLymphomaTeam Member

I had no symptoms with follicular lymphoma. An abnormal lymph node was found in a routine mammogram. My oncologist stated that the radiologist was on her game to have found it. He told me that I could have had it for 10+ more years without even knowing it.

January 12
A MyLymphomaTeam Member

I had sudden onset of shortness of breath. Nothing else. Started getting weaker. In two weeks went to ER and boom there it was.

December 27, 2023

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