Stage 4 PTCL was the Shock of My Life

I turned 50 this year….this is usually a time to celebrate . I have always been in good health, going to my PCP once a year for check-ups, etc. So, as I sat in the Drs office waiting for my mammogram results, I assumed all was good and I would be back in 1 year. Although the mammogram was perfect, the Dr did a breast exam and immediately felt an enlarged lymph node under my left arm.

Test after test

After months of biopsies, cat scans, bone marrow biopsies, MRI, and tons of blood work, I was told I have stage 4 peripheral T cell lymphoma. It had already spread to my bone marrow! I had NO symptoms …..none!!! I was in literal shock. The oncologist was also baffled as to how I could have no symptoms. I am currently undergoing a clinical trial of 2 chemo drugs at Moffitt in Tampa.

As my journey continues

Once I reach remission, I will then be faced with a bone marrow transplant. To say that I am scared would be a huge understatement. The chemo has been so awful. My life has literally changed overnight and I am still trying to understand how this happens to an otherwise healthy person.

Wish me luck as this journey is more than difficult.

Susan

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Comments

View Comments (5)
  • Yolanda Brunson-Sarrabo moderator
    4 months ago

    Dear Susan,
    I’m always perplexed when I hear of the many stories such, as yours… How this can this happen to a relatively healthy person. I guess we won’t get the definitive answer to this, but I can say you are not alone. Though it took so many tries to confirm what was the problem, I’m glad they now know and are able to treat you accordingly. I wish you the best on this new journey and believe me it will be a new journey, but one that will prove how strong you truly are. Best!

  • Mrs.Potts
    4 months ago

    My husband was diagnosed with stage 4 PTCL-NOS in July, after two years of being misdiagnosed by multiple Dr.’s. He had numerous biopsies including bone marrow, muscle, and multiple lymph nodes, skin, and a lesion.
    He has spent the past two years on toxic drugs and 40 mg. Of Prednisone a day. I was so ANGRY at the team of Dr.’s who had been treating him after learning from the T cell specialist at Duke that Prednisone would mask PTCL in biopsies since it is part of the treatment. After a few days, I realized I had to let the anger go for my husband’s sake and help him find a treatment plan and fast.

    After his second chemo treatment, he had a new occipital node appeared and I was terrified and I still am every day.

    He is currently on his third chemo treatment CHOEP and is it handling it very well. We are looking forward to an Allo stem cell transplant in the near future.

    This has been a life-changing event for us, our family and friends. I am now a registered stem cell donor along with friends and family.

    Wishing you the very best,

    Mrs. Potts

  • neeneex4
    4 months ago

    Susan,
    Keep the faith, just pray. I will pray for you also.
    I also have PTCL, stage 4.
    Yolanda

  • Crystal Harper moderator
    4 months ago

    Hi Susan! Thank you so much for sharing your story, I know it’s not always easy to do. I can’t imagine the shock you must have went through when you were diagnosed. Please know that we are all here for you as you go through this journey and we’ll be cheering you on the entire way. Sending so much love your way!

  • Daniel Malito moderator
    4 months ago

    @susanheller68 I wish you luck and all the love in the world. I know exactly how life can change overnight, believe me, and it’s a difficult thing to deal with. I will keep you in mind and, as always, if you want to chat, vent or whatever, we/I am here. Keep on keepin’ on, Daniel P. Malito (Blood-cancer.com Team Member)

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