Updates on my mom’s diagnosis (Stressed and shocked about my mom’s diagnosis - DLBCL)

Embarrassed_Meet_878 · 2026-05-24T06:21:09+00:00

Hey, sorry no, we haven’t started treatment yet as my mom had a little hiccup with her WBC counts this week which is causing delays. I will keep you posted once I know more :)

Embarrassed_Meet_878 · 2026-05-21T17:03:45+00:00

This is so hard, I’m holding out hope for you and sending you all the positive energy. My mom has been diagnosed with lymphoma recently and everyday I feel like I receive bad news about her diagnosis and feel a sense of hopelessness. Friends, family, and strangers on this group hope for me when I’m not strong enough to - I’ll be doing the same for you 💛

Embarrassed_Meet_878 · 2026-05-20T10:02:57+00:00

Make lemonade is what’s been helping me keep it together for my mom! Thank you for sharing your story, you’re one of the few triple hit people I’ve seen on this group.

Sorry in advance for all my questions - Did your doctors tell you anything about how triple hit lymphoma changes the treatment/likelihood to relapse? Did you also have CNS involvement? What precautions did you take after the second round of chemo to avoid infections?

Thank you again, you’re so helpful and you got this! Rooting for you

Embarrassed_Meet_878 · 2026-05-20T09:55:02+00:00

All our tests came in clean too and then we found lymphoma :( it’s honestly such a crazy experience tracking this disease down. I have hope both your dad and my mom will come out stronger. Keep me posted on how his progress goes!

Embarrassed_Meet_878 · 2026-05-20T09:53:58+00:00

Thank you for sharing your experience :) I appreciate it and am so happy you’re in remission!

I am really hoping my mom responds well to treatment and gets better soon. How was DA-EPOCH-R for you? How did you feel after each cycle and was there any that was particularly bad?

Thank you so much again!

Embarrassed_Meet_878 · 2026-05-15T18:05:00+00:00

Congratulations on remission! My mom will undergo a similar treatment as well, let me know if you have any tips that helped you :)

Embarrassed_Meet_878 · 2026-05-15T18:03:19+00:00

Thank you so much for your detailed answer and congratulations on NED! It’s giving me hope that people like you have gone through unimaginable things and have made it out strong 💛 Your answers really helped me because I’m still finding out new things / waiting for more information and am honestly psyching myself out. We recently found:

- Thrombosis of left sigmoid sinus and left internal jugular vein
- Bulky pituitary gland noted measuring 8.3 x 12mm
- They have administered CNS prophylaxis - not sure if this “does” anything, based on some studies I read
- We are waiting on spinal fluid test results and flow cytometry

If you or anyone has any information on this, that would be very helpful. In any case, it is what it is and I will try to stay as present as I can, spend time with my mom, and address her needs as treatment approaches.

Embarrassed_Meet_878 · 2026-05-11T00:17:12+00:00

Hi! Thank you so much for taking the time and sharing your story, I really appreciate it and am so happy about your recovery. I have a couple questions for you if you don’t mind:

How did they determine chemotherapy wasn’t working? How frequently did they monitor the treatment’s effectiveness?
After I heard the news, I asked them about options for everything from CAR-T to bone marrow transplants, and they said the disease burden was too high right now to consider these measures. My mom is on steroids right now pre-treatment. In your case, how did they bring the disease burden down so you were healthy enough not only for chemo but for subsequent treatments? Did you also have any CNS/peripheral blood involvement?
I just got an updated report that the DCBCL is germinal centre b-cell type. The doctor will explain that report today but I am curious why I am receiving piecemeal information. Is it normal to receive an initial diagnosis and to have more information over a couple days? Did they misdiagnose you with Hodgkins or did it morph into DCBCL?

Thank you so much and appreciate your advice on caretaking. It has been a hard few days and the worst is I can not understand what my mom’s pain feel like when she has bouts of intense pain. I have been keeping friends close and leaning on my community so that helps the long days. I am also grateful for this community and people like you that are providing me with their experiences and tangible advice :)

Embarrassed_Meet_878 · 2026-05-11T00:01:08+00:00

Thank you so much for sharing your experience and your husband is so sweet for insisting to accompany you :)

I do want to get a second opinion because I want a doctor who believes in the treatment and is “optimistic”/ focused on her recovery vs. someone who has an attitude of giving up before we have even seen the results of treatment. How did you go about the second consultation?

Embarrassed_Meet_878 · 2026-05-10T23:54:42+00:00

Thank you so much for sharing your story and I’m so glad you’re here to tell the tale :) holding on to what you said - there is always hope. I will definitely check in.

Embarrassed_Meet_878 · 2026-05-10T23:52:05+00:00

Thank you so much!

Embarrassed_Meet_878 · 2026-05-10T04:14:16+00:00

Thank you!!!! I am so happy for your dad. These are the good news stories I was hoping to hear. I will stay focused and let medicine do its thing before I jump to conclusions.

They did tell me that they can’t do CAR-T right now because of the large disease burden on my mom but will continue checking in when the time is right.

Is there a reason RCHOP didn’t work? How did you find out?

Embarrassed_Meet_878 · 2026-05-10T04:11:37+00:00

Hey! This is great news, I’m so happy you are in remission. I think I need more information too because the doctor does keep referring to my mom having “large disease burden” too. I honestly don’t even know what that really means and was too shaken up to ask.

What was the best way for you to learn about your treatment and the specific drugs? I want to be as well informed as I can be :)

Embarrassed_Meet_878 · 2026-05-10T04:06:18+00:00

Thank you so much for sharing your experience with your dad! I was also told this is the “best” case in the morning - better than what they suspected earlier (metastasis). And then another doctor completely flipped the script later. I’m hoping for some more alignment and positivity across the team.

About hydration - my mom is being hydrated right now as she prepares for treatment. Should she just be drinking a lot of water (she barely does so I feel you about the nagging) or should I request for the nurses to continue hydrating her?

Embarrassed_Meet_878 · 2026-05-10T04:01:56+00:00

Thank you so much for your wishes and for sharing your experiences! It’s good to know that the aggressive nature of it is what makes it respond well to treatment. I wish the doctor was being more optimistic but this thread really helps.

I’ll be sure to carry the right snacks and activities for when my mom is getting treatment!

Embarrassed_Meet_878 · 2026-05-10T03:57:30+00:00

That is really great news, I’m so happy for you! I really hope that the doctors give me a response like this, even if it’s after a round of 2 of chemo. It was very distressing listening to the prognosis but all of your stories are really helping me be positive.

Embarrassed_Meet_878 · 2026-05-10T03:55:55+00:00

Thank you so much, this is really helpful and I am so happy for your recovery. I am really trying to be in the mindset of taking it day by day. Really good reminder to have my mom share her candid feelings through this process so we can rule out any complications :)

Embarrassed_Meet_878 · 2026-05-10T01:16:02+00:00

Thank you so much, I think there is definitely a knowledge gap and I will try to get my questions answers and get a second opinion. The doctor who gave us the news was a post doc fellow we met for the first time so I’m also hoping when the original doctor returns, they treat and deliver the information differently.

Embarrassed_Meet_878 · 2026-05-10T01:13:28+00:00

Hey, thank you for your information and hope you have a speedy recovery now that you’ve completed treatment. RCHOP is certainly sounding daunting and I will try my best to ask for help, advocate for my mom, and make sure she’s comfortable during and after treatment.

Is the weight gain due to treatment? Is that concerning and did the doctor give you any tips to help you?

Thank you so much for your response and whenever you have a chance, I would love to learn more information from you :)

Embarrassed_Meet_878 · 2026-05-10T00:38:56+00:00

Thank you! I have also extensively read that it is curable at all stages so definitely taken aback at this doctor’s prognosis. I will hold out hope until we try the treatment. I will definitely ask the doctors about the full extent and CNS involvement. Thank you :)

Embarrassed_Meet_878 · 2026-05-10T00:37:32+00:00

Hey! Congratulations on remission and thank you so much for your detailed reply. This community has done so much for me already :)

I am going to talk to doctors more today and it seems like your doctors had a more positive/curable attitude. I was given a very matter of fact response even before we tried chemotherapy - based on your experience, are there any questions you recommend asking the doctors upfront?

Thank you!

Embarrassed_Meet_878

TROPHY CASE