Please Share Your Diffuse Large B-Cell Lymphoma Journey
Comments
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Jim, very sorry to hear that the results of the PET scan were less than ideal. Like Gigi said, it's good to hear you and your oncology team will make a plan going forward. Memorial Sloan Kettering has an outstanding reputation, so they should be able to address second-line treatments.
Yes, please update us here! Best wishes on what I know is a challenging road.
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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! 🙂
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Thank goodness! I am so happy for you!
Load up on those iron rich foods and I assume you are on iron supplements. Hopefully as those RBCs rebound, the SOB will improve to the extent the fibrosis will allow.
As I write this, I am in the chair completing round 3 of R CHOP. Sonce I had the anaphylactic reaction to the Neulasta, I am on isolation at home to protect against infections. Hardest part is not seeing my 8 precious grandbabies.
Next stop is PET on November 3rd. Hoping for good news on my response 🤞
Wishing you continued excellent progress.
Take care,
Gigiof8
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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.
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That's great news, JimH52!
Gigiof8, hope the results are good. That's a drag about the hypersensitivity to Neulasta, but you're halfway there with treatment so you won't be isolated in the future.
I'll return to work this Monday. Fortunately, our department is entirely off-campus so it's all work-from-home, which is helpful for me. My lymphoma team has noted in the official cleared for work document that I'll need flexibility for rest since I am still recovering from chemo. My employer is very good about accommodating flexible schedules.
My post-chemo surprise was more hair loss! My hair had thinned after rounds 1 and 2, then stopped. I had thick hair to begin with so it wasn't bad at all. When I saw my oncologist last month, I was kind of gloating that my hair loss hadn't been bad, and he agreed. Well, wouldn't you know it, 3 or 4 days afterwards, I started shedding again! I'm not patchy but my hair is really thin now, and my scalp is visible! I also lost my eyebrows and eyelashes in early October but it feels like they are starting to grow back. My hair though...😆
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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
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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."
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This is great, GiGi! Those encouraging results will help you power through the next 3 rounds and the temporary separation from your grandbabies. Are you able to Zoom or FaceTime with them?
I just ordered hair clippers to tidy up what remains of my sad hair. One of my colleagues suggested that I draw on wild and crazy eyebrows to surprise my program teams when we're on camera. Sounds entertaining! 😆
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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.
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sromanyk, hoping for peace of mind and beautiful love to you.
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