Please Share Your Diffuse Large B-Cell Lymphoma Journey

JimH52

https://csn.cancer.org/discussion/comment/1700933#Comment_1700933

Fantastic news it will take a few months to recuperate from chemo but you will get back to normal. My chemo ended in late August but now I feel energetic again.

JimH52

https://csn.cancer.org/discussion/comment/1702882#Comment_1702882

How very courageous and a blessing to all of us with DLBCL. Thank you for your testimony God's peace be with you.

cnovel

https://csn.cancer.org/discussion/315795/please-share-your-diffuse-large-b-cell-lymphoma-journey

2/20 stage 4 in both sides of abdomen,,testicles (both) swollen and painful,,6 cycles r-chop,,5 methotrexate in spinal taps,,growths on kidney,,after remission,2/21 they went down,,,then heart rate started dropping,,I have a pacemaker now,,it got infested,scar tissue,,gives me regular pain,,,9/21,,,MRI 8/22 to check on kidney,,,report said nothing about lung spot,,,in december12/22 they say lets do a ct scan .if nothing shows,we can remove port,,now I have 7mm spot on right lung,,go for another ct scan next month to see if it grew,,(MRI */22 made no mention,,I have never felt normal after treatment,,I work outside one day,I need to rest for 2,,I am tired

57 at diagnosis , pretty healthy overall, last regular doctor I had was pediatrician,, 500,000 later ,,I have many

Gigiof8

Hi Rituxious!

Been a bit since we have communicated. The conversation thread here is a bit chaotic, so hope this reaches it way to you.

I am hoping that your remission and follow-up scans have been clear? How is the hair regrowth? And more importantly your overall health?

I had my 6 month scan in July and so far so good. I follow the usual pattern after each follow up- a sigh of relief, a period of time where I feel all will be well, and then a touch of anxiety returns as the next follow up approaches. To be expected I am sure.

The hair regrowth has been interesting. Has come back curly, which I hear is common. Many ask me if this is my natural color, but who knows as I haven't seen my natural color in over 30 years! But it is hair and I will take it over the bald look. I have returned to work full time. Actually never quit work through treatments but have now transitioned to a new role. Sad to leave my clinical practice but when I returned to seeing patients every 15 minutes I was exhausted and sick every other week. My new role is different though still very fulfilling. Definitely less taxing.

Hope life is well with you!

Heidi

Rituxious

https://csn.cancer.org/discussion/comment/1708788#Comment_1708788

Heidi! Thanks so much for asking. Great to hear from you and of your progress! Congrats on the good results for the 6 month scan. That's a very good sign. I'm glad you were able to transition to a role at work that is engaging but not as physically taxing. I can't imagine how you were able to continue working through treatment. I don't think I was ever so fatigued as I was during the worst of the lymphoma pre-treatment then during treatment.

This Friday will be my 1-year anniversary of my final R-CHOP treatment. I'll have a CT scan and echocardiogram in early November, but based on labs, physical exams, and most importantly, how I feel, all is good. My energy level and strength have improved a LOT! I may not be at 100% compared to before I became ill, but like I told my oncologist, I'm good with 90% or even 85%.😊

My hair has grown back, even had 2 hair cuts, although in my case, my previously naturally curly hair is much straighter. Still salt and pepper, mostly salt, since I stopped coloring my hair 15 years ago. Eyelashes and eyebrows have grown back nicely.

I have been back at full-time work since last November. All of my department is remote, so working from home, which makes things easier. I'm in the midst of a new drug submission so that's pretty exciting. Still, I'm counting the months to retirement. 😊

Thanks again for asking!

bonniegayle

https://csn.cancer.org/discussion/comment/1700150#Comment_1700150

Hi I am on day 5 of r chop. Yes that was a rough start for you. I have had weird symptoms come and go but just wanted to say that your positive attitude will you through . This is only temporary. Sending you healing hugs

alispice

Hello! I was diagnosed with stage 4 Diffuse Large B Cell Lymphoma in Sept 2023. age 52 y/o female - all cancer found in spleen and bone marrow - no other lymph nodes

I have just finished round 3 of R-chop.

surprisingly I still have a lot of hair - though it has thinned

responding well to tx- dr mentioned complete response last week.

pet scan shows a couple other hot spots so following up on colon and thyroid next week

Rituxious

Update: I just had my ~14-month post-chemo CT scans last week, and there continues to be no evidence of disease. My oncologist is amazed at how well I have recovered. The truly awesome lymphoma group at DFCI will continue to monitor me over the next year. I *could* get my port removed now, but I'm in no hurry. Maybe next summer or fall. At any rate, I'm feeling pretty good!

Gigiof8

Wonderful news! I am so happy to hear you continue to do well.

I am nearing my 1 year post treatment in December and will have my scans done mid month and hope to be able to report the same good news. I took my port out in September. I was told I could take it out earlier but delayed feeling like I would "jinx" my recovery! My port was starting to be bothersome so I removed it. Easy process with little discomfort. I feel well, my energy and stamina have improved and my hair is growing back nicely! All in all no complaints.

Will post an update next month after my 1 year scans.

bonniegayle

I am so happy to read these positive posts. I was dagnosed with stage one large b cell NH lymphoma in October, contained to my stonach. Heading into week three of my first cycle of 4 and it has been a bit of a rough start but hanging in there. Thank you to all of you who share your journey. Sending healing hugs to all.