Please Share Your Diffuse Large B-Cell Lymphoma Journey

Well the results were not what we hoped for and now onto Memorial Sloan Kettering on Oct.12 to get there input where treatment should go.

Thank You I will be updating as I go along in my Life with Cancer

Hi Rituxious,

You were on my mind today as I believe your PET scan was scheduled for today. I am hoping you had good news.

Take care,

Gigiof8

Hi, Gigiof8 & JimH52,

Thanks for asking, and yes, I have good news! My post-treatment PET scan showed no evidence of disease/lymphoma. I'm still a bit fatigued from the final round of R-CHOP, and I have shortness of breath (SOB) on exertion, but otherwise I'm recovering reasonably well. I'm quite anemic (result of the chemo), so my oncologist thinks the SOB will improve as my hemoglobin count recovers. However, the autoimmune-related fibrosis in my lower lungs also contributes to the SOB. Fortunately, my rheumatologist and pulmonologist are on top of this, so they'll be in touch with the oncology team on next steps. In the meantime, the rituximab did a great job of knocking back the autoimmune symptoms as well as the lymphoma!

I'll go back for a complete blood count in 4 weeks. The plan going forward is periodic scans and check-ups with my lymphoma team for the next 18 months. I plan on returning to work in about 2 to 3 weeks; our entire department is remote, so working from home will work out nicely for me.

So, fingers crossed that I stay in remission! 🙂

Fantastic news

Thank you! Sure would like to fast forward till this time tomorrow. I remember you saying that getting your mid treatment scan with good results helped you keep moving forward. Hoping for the same boost! Overall, it hasn't been too terrible other than the fatigue. The most difficult part has been the isolation. Since I am not able to take the Neulasta, I have had profound neutropenia. So no grandbaby snuggles for way too long. Looking forward to making up for lost time soon.

Hope you have continued to feel well. Thank you for checking in with me. Will give you an update when I know results.

Good Morning everyone I had very good result from my recent Biopsy. 99% dead cells only a few left that most likely will die.

Follow up with more frequent PET scans fairly close by to home only 2 hours away. Relieved and giving thanks to God the creator. Amen

Jim- that is wonderful news! So glad you shared with us.

Rituxious- Happy to hear your employer is accomodating your need for flexibility but what a bummer about the hair loss. To get all through treatment and then to lose more this late in the game. I lost all my hair 2 weeks after round 1. Eyebrows and eyelashes have thinned but still there....for now.

I am thrilled to report that my mid treatment PET scan shows good response to treatment! So three more rounds to go. Will keep muddling through!

And yes I miss my grandbabies terribly but will gladly give up this time with them for all the good years to come.

Take care,

Heidi

That's great news! Very encouraging. If your experience is anything like mine, those results will help you power through the next 3 cycles of chemo and the temporary absence of your grandbabies. Are they old enough that you can Zoom or FaceTime with them? Not the same as cuddles, I realize. 😊

I just ordered some hair clippers to tidy up what's remaining of my sad hair. Not as extreme as the NoHo Hank look, but close. 😆

NoHo Hank is a character in the HBO series, "Barry."

My journey began in 2018. Agent Orange victim at age 69 when diagnosed. 6 months of Rituximab + Neulasta shot, then 24 months of a biologic drip bi-monthly. In remission since scans after chemo. Prayer is a huge help.

Our son was diagnosed with colon cancer that spread first to a lung, then to his brain. Multiple scary surgeries, but scan results came back 2 days before Christmas. Prayer was again our Co-pilot.

to those who doubt the healing power of prayer, I can only say “try it”. It can’t hurt, and it just might give hope and clam to a fearful soul.