Has anyone had a friend or family member w/ Double-Hit Diffuse Large B-Cell, Non-Hodgkins Lymphoma?

[smirkymonkey]

My mother (78) was just diagnosed w/ that after over a month of tests, biopsies, scans, etc and is now starting chemo and some other treatments. I have been trying to figure out what the prognosis is and and what the timeline might look like, but it all seems very confusing to me.

I know it is a very aggressive form of cancer, however I don't seem to be able to get my mind around what we are in for with this. Can any of you share your experience going through this w/ someone? Thanks in advance!

[Scrivener7]

1. Oh, man. I'm sorry. We have had T-Cell Non-Hodgkins in my family, and it was

bad. I don't know what B-Cell is like, but my heart goes out to you and your mother.

[smirkymonkey]

5. Thank you! We just found out it was "Double-Hit" which is supposed to be even worse and

I have been looking things up online, but it either seems too technical or too vague, so I can't really tell.

My parents are have T-giving at their home this year, the first time in a long time. We'll all help out and contribute, cook and clean. My siblings are a little more involved than i am because they are closer and have cars, but we haven't really spoken much on the phone and it's just been texts back and forth which I don't really understand either.

Thanks again for your kind words!

[Freddie]

2. My brother had NHL 2x

Not sure which kind. 1st time was in 1997. Had aggressive chemotherapy and a year of interferon shots after that.
22 years (!) later he has a recurrence. This time he recognized the symptoms and went to the oncologist promptly. They did a bone marrow biopsy and determined it had not spread to his bones, so he was a good candidate for an autologous (self) bone marrow transplant. Thankfully he lives near Hershey Medical Center, Penn State’s teaching hospital, and got great care. The transplant involved more intense chemotherapy before they could harvest the bone marrow. He had to spend a month in isolation at the hospital as he had no immune system for a while. (This all took place in 2019 THANK GOD.) anyway 2 years later he’s doing great, gets periodic blood work and scans, all great so far. He’s 68.
Best of luck with your mom. Docs told my brother that NHL is a “treatable” cancer unless it spreads to the brain. He got 22 years the 1st time and hope many more this time.

[smirkymonkey]

6. Oh that's good to hear! I am glad to hear he is doing so well and it seems like he has a great

attitude and takes an active part in his own treatment, which I think makes a big difference in one's outcome.

We were really worried about her mental condition up until last week because she was just ready to give up and die. However, things have turned a corner and now she is ready to fight and have a positive attittude.

Thank you for sharing your experience!

[walkingman]

3. I was diagnosed with DLBCL 2X when I was 66 - had RCHOP chemo and have been in remission

Last edited Fri Oct 1, 2021, 12:13 AM - Edit history (1)

since. I also had 35 IGRT Radiation treatments. It took me about a year and a half to get back to normal but so far so good. My Oncologists told me the goal is to die from something other that this cancer. It might come back but if so they will treat it again.

Good Luck - time passes fast - enjoy every day!!

[smirkymonkey]

7. Wow! Good for you! That is such a good outcome! I am so sorry you had to go through it, but

I am glad you are in still in remission and doing well! This thread is making me hopeful!

Thank you very much for sharing your experience!

[walkingman]

9. Sorry I misspoke - I meant to say that I was diagnosed when I was 66 not 1966

I am now 71 - so 5 years ago. I went every 3 months for bloodwork for the first 2 years and now every 6 months. I also got semi-annual CT scans and a couple of PET scans over the last 5 years. NHL is treatable. In my case the mental issue of being diagnosed with cancer was worse than my treatment but thankfully after my hair came back and I began to get back to normal that also has gone away. One good thing it did for me was make me appreciate everyday more - my personal relationships more - and understand that we all would be better off to live in the moment.

Peace and Love!

[smirkymonkey]

10. Oh, I did think you meant in 1966. But still, 5 years is good for this type of cancer.

What I was getting from the reading I was doing was that the median survival rate for DH DBC NHL was less than 2 years, but I also know that people can live much, much longer as well, but she was over 10 years older than you at age of diagnosis as well.

I do think the mental issues are almost half the battle. We were almost ready to give up on her because she wouldn't eat, move, talk, etc. She was just ready to give up, but a few people had a "come to Jesus" talk w/ her and she snapped out of it.

Thanks again!

[woodsprite]

4. Just remember when you look at data and reports

Your mom is not a statistic. That was the best advice I ever received from my oncologist. Something else I noticed when researching my own cancer was that reports from foreign researchers tend to report patient experience based outcomes where US-based research seems to be drug results based.

Sending healing light and prayers to your mom.

[smirkymonkey]

8. THat is good advice! Thank you!

And an important point to note when looking at research. There are so many individual factors that go into a person's chances of having a more favorable outcome.

I hope you are doing well now and feeling strong and healthy. Thank you for your kind words and sending you healing light and prayers back!