Non-Hodgkins Lymphoma - chemo advice during coronavirus pandemic

[purplerain44]

Hi all, my DH who is 50 has just been diagnosed with this. It is low-grade, advanced lymphoma in his bone marrow - this is such a shock to us as he had a bone marrow biopsy last year due to very low blood levels, when lymphoma cells were actually found, but for some reason we were told it was clear and he was discharged.

Fastforward 18 months and we are in this situation now, during covid, and told he needs chemo starting next week following a second bone marrow biopsy two weeks ago. The doctor said it the lymphoma treatable, which is good to hear, but nonetheless we are scared. They would usually treat with the stronger chemo (R-CHOP) but he said it is too dangerous at this time, so he is going to have R-CVP. After last year's cock-up, I don't know if I trust this decision so my first question is, will this affect his chances of going into remission? What if it doesn't worK?

Also, I have no idea what to expect. I work and we have two DC 7 and 11. I am currently working from home, but can't have the kids with me in the room as I have clients that need confidentiality (think therapy work). I really want my DH to rest but I am also self-employed. Will I need to take the time off to look after him and them? My parents can come and distance-look after the kids in the park one morning a week, but I work 4 days a week. I know everyone is different, but I wondered what other's experiences were.

It would be great to hear from anyone who has any tips, advice or previous experience as we're feeling quite alone in all this. Thanks.

Firstly sorry to hear of your husbands diagnosis but pleased the consultant is confident it's highly treatable!

I can't answer many of your specific questions, not being a haematologist but I work closely with that service.

Have you not been given a contact detail for a cancer specialist nurse? They are highly trained and should go through all this with you? They are an absolute life line and most haematology units will have at least one to support you and your husband.

If you're concerned about the choice in treatment I'd ask for a second opinion from another consultant?

Best of luck x

hi, we haven't been given a nurse yet - due to the misdiagnosis last year, we pushed to get the results as quickly as possible - I think we will get a nurse soon though.
yes, a second opinion is what I was thinking but we also don't want to waste any more time.
Thanks so much for replying to me.

Hello, I had NHL and had RCHOP and radiotherapy. Have you looked at lymphoma-action.org.uk/ which has lots of information, support helplines and a forum so you could ask about the specifics - I’m happy to share experience but it does depend on the type of lymphoma and treatment so whether it is relevant is another matter. I would say however that I was very unwell prior to and during treatment and really couldn’t manage looking after my two (much younger than yours at the time) children so do make sure you have support.

So sorry to hear of your DH diagnosis, that’s horrible to hear at any time, but especially scary right now.
I am a fellow NH lymphoma patient, but sounds like a different type. I had to make a decision between R-CHOP and a more aggressive treatment, but that was all pre-Covid.
I would want the consultant to be very clear on his expected outcome and the differences between the two treatments in side effects, risks and likely outcomes. Is he looking at complete cure or management? Etc.
You may already know the above, but if not, you both need them to be very frank, so you can come to an informed decision.
All the best to you both 💐