Non GCB dual expressor NHL DLBCL

My husband has Diffuse B cell lymphoma. He’s 76 and very fit. His first round made a large growth on his chest disappear in a week! We felt fine. He had his second round not long ago and is more tired.

I found it stressful and making sure he took his medications was quite daunting but it’s ok.

I hope this helps. 

Hi  and welcome to this corner of the Community.

I would say yes to your question, but not everyone will ‘see’ the difference but a lot will ‘feel’ the difference.

before threaten to started I looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted. I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner.

I was 58 at the time.

My mum is 63 and has non germinal dlbcl stage 3 with ki 67 90% bcl2 and bcl6 gene expresseions with cd 20 60% with 1st dose of mini rcvp her abdominal pain came down and she was pain free for 19 days in the mean time 1st dose of RCHOP was given as out paitient and she was admitted again on its 7th day with pain in the tumuor area and low blood counts. She is overall fine had a bit of nausea after 1st chemo and was doing well untill this mayhem struck pain is her only complaint. And I am searching for a reason. The doc today told non gcb with cmyc dual expressor is a high risk type and only after 3 chemos will determine what is her prognosis but today told that they will think to change it to R EPOCH but both have same prognosis. Why has the pain come back? Wasn't the chemo going to kill the cells there. Then why the pain again.

I need advice and what to expect from people who have been through the war.

Hi again,

I would say that on review her team had to change her treatment as the condition was more aggressive then first though....... its very difficult to get this spot on so changes can and indeed do happen.

I was diagnosed with a rare Cutaneous T-Cell Lymphoma (Skin Lymphoma) (CTCL) in 1999...... and it took 14 years before the condition became very aggressive so it had to be hit hard but on a slow burn.......... so I was given 6 cycles of R-EPOCH 5 days/nights in hospital on IV chemo 24/7 so 120hrs+ per cycle. So by the end of the treatment I had received over 700 hrs of chemo.

I tolerated it well and yes, it did the job of clearing things up to allow my team to then move onto the next part of my journey......this you can see by hitting my forum name Thehighlander

At 63 (I was 58) she is still ‘young’ going into treatment so this will help a lot. 

On the whole my Nausea was ok, but her team will take care of this, she should not suffer this in silence as her team can change her meds, but they are not mind readers as this is sometimes trial and error.

Fatigue will build up but she must keep active as this is the best way to overcome this. Yes it will increase as the cycles go on but she needs to keep some activity going. During the time in hospital I took both my chemo pumps for walks around the ward after every meal - I worked out I was doing a few miles a day!!!...... and I did not have real Fatigue...... this kicked in after my two Stem Cell Transplants.

Avoiding Infections is the big one and especially in the days after her treatment as her immune system will be compromised, don’t get paranoid- just carful.

Some hospitals will highlight Eating and Neutropenia so she most likely is on an expectant mums diet!!!! Tell her that one at 63.

I had dad Peripheral Neuropathy but my treatment journey was long and strong but I am over four years out and doing great.

We are around to help out as best as we can.

would like to know what was his type of lymphoma what chemo plan he has got and how is his progress now? Sorry for all who are in this community and prayers for everyone and their carers.

Hello Killymph

1. He has Diffuse Large B Cell Lymphoma. They have planned 6 chemotherapy’s (RCHOP) and then 3 weeks of radiotherapy. He’s had 2 chemotherapies and he is doing fine. No side effects apart from feeling tired, so learning to pace himself. He keeps active - we have a dog and live by lovely walks so very pleasant. Also eating well. We are really going for excellent nutrition and healthy snacks. 
   We find his health team are excellent and very helpful. 
   So although it’s really scary, I feel we will pull through. How is your mum? How are you feeling?

For what it's worth, Killymph . . . My Terry (just turned 64), was 62 when he was diagnosed with Germinal, Diffuse Non-Hodgkin's Large B Cell lymphoma (May, 2018).  He had a baseball-sized tumor in his small intestine which was removed surgically, followed up by 6 cycles of RCHOP.  He was Stage IV, and is in the high-risk pool with a 48% chance of a 5-year survival and 50/50 after that.  We, as you may have read, are still struggling with how to "move on" after finishing chemo.  If you are interested in Terry's personal chemo experiences, just send me a private message and I will summarize them for you if you'd like.  Suffice to say, he tolerated the chemo fairly well, with few major side effects.  His physical fitness and a lot of steroids and anti-nausea meds were his main weapons of war, fighting the "beast"; but he also was prescribed a Neulasta "onpro" injector that was attached to his abdomen after each of his last 5 treatments.  That thing boosted his white count after each and kept his white count from dipping too low which did the trick in keeping him from infections, colds, etc. 

Just let me know in a message if you'd like to know how each chemo went for us.

Hope you and your family are spared the worst of the worst.

Take care,

Dawn

I had pain where the biggest lymphoma tumours were too, in my chest. The doctors don't say anything about it but it seems telling that I've heard others say the same. In the end I saw it as a good sign that the lymphoma was being challenged but I don't really know if that's true. Either way by the end of six chemos and three weeks of radiotherapy the lymphoma was all gone. Good luck with the rest of the treatment.