Recent Diagnosis

Hi and welcome to our corner of the Community.

Sorry to hear about your dad but the first thing you need to know is that NHL is very treatable. There are rather a lot of different types of NHL - has he been told what type he has?

The PET scan will indeed check him over for any other involvement and with this a plan will be put together.

Has he had a biopsy done on the area?

My story is rather long so hit my Community name to see it. I was diagnosed way back in 1999 but in late 2013 my main mass was in my neck, jaw and inside my mouth - chemo did the job and helped me go on to have the other treatment I needed.

I am doing great now so let’s look for the same for your dad.

Keep your questions coming as we can help as best as we can.

Hi there

My primary mass was in my sinus cavity and had spread to the nearby lymph nodes and bones.  The goal of my treatment was cure, if that makes you feel better.

I'd also like to know what biopsies and imaging have been done to date.

Don't worry too much about the PET.  Blood cancers aren't like solid tumours.

Your dad will almost certainly be treated with chemotherapy initially.  When you know the treatment plan we can fill you in on what going through it is like.

Thank you for your reply! All he really mentioned was B type? Not sure if that means anything to you. He has had a biopsy on his jaw, for about 18 months he's had troubles with the area of his mouth thinking it was an abscess or tooth trouble and recently it got really painful so he went to a different doctor who thought it was an infection and the biopsy came back as NHL, his Pet scan is next week. It's really reassuring to know it's highly treatable. He's 50 but could be healthier but we're keeping everything crossed. Hes insisted he's going to continue to work! He's one of those men who live and breath working and won't be told differently but I'd be interested to know if there's financial help available should he need it. He's married and my mum's employed but I don't think she could afford everything alone, that's a real worry for me. Thank you! 

It could be diffuse large B cell lymphoma, which is the most common type of NHL (we have a DLBCL group).  It could also be a sub-type of that called activated B cell.  There are a lot of different types of lymphoma and B cell lymphomas are the most common.

He might be able to work for at least some of his treatment period.  A lot of people don't start experiencing fatigue and chemo brain until they're half-way through treatment or even later.  He'll just have to take it cycle by cycle and see how much it affects him.  Some people breeze through it with relatively minor side effects.

Do they think that the trouble he was experiencing previously is related to his lymphoma?  If so, that would suggest that he had an indolent type of lymphoma which transformed into an aggressive type, and it would be managed slightly differently over the long term.

For what it's worth, relief from pain and swelling is fairly immediate.  Even during the pre-phase period before I started chemotherapy proper you could see the swelling in my lumps and bumps going down and the reduction in pain was substantial.

One of the most important things to remember is that most side effects can be managed so it's silly to suffer them in silence.  He needs to get onto his team immediately when he has a side effect instead of waiting until his next scheduled appointment to mention it.

Hi Meg, if this has been going on for around 18 months then the is a good chance that its an indolent type which means it is slow growing. We could second guess lots which is not really useful at this point so I would just reinforce what has already been said and that is that most types of NHL are treatable, so when you can get more information from him, let us know and we can give you more specific information that will be relevant to him and his treatment. 

As for financial support best to ring the macmillan helpline and speak to an advisor when you have all the facts.

regards

John 

Thank you for sharing that with me. I think it's been causing a problem for all the time in his mouth so they are sure it's to do with the lymphoma but it's been the start of this year he's had real pain with it, he was due treated before the covid-19 situation and so it for postponed, the pain then increased a lot so he went back and they started the process that's led us to here so far. This has been such great help so far, thank you!

Good morning , you have had some great support and I am sure that you are feeling the positivity.

As for financial matters do call our Macmillan Support Line Services on 0808 808 00 00. This service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link but you may find the service very busy at the moment.

As for him working through this time will tell but you are all at the starting point at the moment so let’s not jump to any conclusion.

In normal circumstances we would always advise that two people go to appointments but as this is not happening he could ask if he could record his appointments so that you and others get the truth rather than what he wants you to hear.

We are always around ((hugs))

Hi, the PET scan came back that's it's also in his neck and behind one eye and something was odd on the prostate so they want to check that again. It's high grade B cell and the chemo is R-CHOP? They're saying 4 lots of chemo and then radiation treatment, thanks for all your support and experiences so far it's been really helpful :) 

R-CHOP is a standard and effective treatment see the link below for some information.

We also have a Diffuse Large B-Cell Lymphoma group as well.

https://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/combinationregimen/r-chop.aspx

Thank you so much I will join that group too