Low grade b cell non Hodgkin lymphoma

Hi Donna69 and a warm welcome to you to this little corner of the Community although I am sorry to see you joining us and to hear about your Non Hodgkin's Lymphoma diagnosis.

I am Mike and I help out around our various Lymphoma groups.

Any cancer diagnosis will be a shock….. but when it comes to lymphoma, especially Low-grade non-Hodgkin lymphoma (NHL)…….  you are going to come to understand that this is very treatable when required.

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of T-Cell Low-grade non-Hodgkin lymphoma (NHL) then in late 2013 a second type of more aggressive T-Cell NHL come along so I reached Stage 4a so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Do you know the EXACT name of the type you have?.... as there are a number of B-Cell NHLs and each can be rather different........ I say this as there are 60 types and sub-types of Lymphoma

Active Monitoring (Watch and Wait) is a normal first step in living with a low-grade (slow growing) NHL……. I was basically on Active Monitoring for 14 years before I needed and full treatments.

As for grading I am assuming you are thinking about Staging. 

Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies 1) Where the Lymphoma is presenting in the body (it can be anywhere) 2) What is the best treatment approach and best treatment type for your presentation and 3) How long your treatment needs to be.

As an encouragement I am now 8.5 years out from my last treatment, I turned 68 last Nov and am living a great life. 

Always around to help more or just to chat.

Thanks Mike for reaching out and for sharing   My doctor doesn’t know the type it was discovered almost by accident  I’m going for a scan shortly of the neck down  I don’t have any lump sites for them to do a biopsy on  

yes sorry I meant staging  new language to think of now you have helped me with your own life and experiences  what a journey you hav been/are on  

I suppose I’m just trying to educate myself right now  I was advised not to go on patient forum by my doctor but I feel I am best placed to make the decision myself  I’m glad I did

Hi again and great that you have found the information helpful so far.

Yes my journey has been full on but that can be an issue when you get the gift of 2 rare types of NHL

The problem with a lot of patient forms is they often are not helpful and many medical professionals think that you are going to get medical advice…… this is the case in some sites……. But not on here…… just first hand honest experiences with posts moderated by the Macmillan team if anything dodgy is found.

Getting clear information can be challenging as Consultants tend to rattle through stuff….. we have had years to get a rhythm as to how we approach meetings……. but the links below will help you get your head n a place to take some control.

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

All the link I use are taken from the Lymphoma Action website. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms both for patients..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Always around to help - no question is little or silly ((hugs))

Hi again Donna69 good that you are finding the community helpful so far.

Yes, some doctors are anti patient forums as they think it’s all about non experts giving medical advise and magic cures…… but as you see this is just not the case on the Macmillan Community……. First hand experience and support is what it’s all about.

Yes I have had some journey but this is down to me being gifted 2 rare types of NHL…… but I am still standing although I have just finished a full day in the garden

I had no lumps into I was 14 years ago n abd even with my consultant being 99% sure that I had a rare skin NHL it took a full year and abit 6 biopsies to get the truth.

Getting clear understandable information can be challenging. We have had a lot of practice but you may find these 2 links helpful.

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

All the links I put up are from the Lymphoma Action website. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms both for patients..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Always around to help out or answer questions ((hugs)) 

Thanks ever so much for everything. I am so happy I reached out through this community. I have already learned so much. Thank you for the links. I will look them up tonight. Your journey is absolutely remarkable. Inspiring. Thank you so much. Donna

Hi Donna information is power to have a long look at the Lymohoma Action site.

I seen the little discussion about Active Monitoring….. it is counterintuitive to be told you have cancer and nothing is done about it….. but you can’t cut our Lymohoma and this is confusing especially when you talk with others who have been through a sold tumour cancer journey.

I actually don’t like the term Watch & Wait…. or ‘worry’ as a lot of folks will say….. I find  W&W a very negative mindset as it implies that nothing is being done…… but in fact you are and will be continually ‘actively’ monitored and action ‘will’ be taken when your condition develops to a point where the treatments available will be most effective…..treating early can be less effective and there are life time limits as to how much treatment you can have although as you have seen I have had about a total of 800 hrs chemo, 45 sessions of radiotherapy and 2 Stem Cell Transplants and there are now some new treatments available as a fall back if needed…..

But as I am over 8 years out from my last treatment and not on any Lymphoma related drugs….. and when I look at getting Travel Insurance they say as I am 5 years out from treatment I am cured!!!!!!…… but my type of NHL is incurable …… Lymphoma can be very confusing.

Our 2 daughters were about the same age as your children when I was first diagnosed, they had no hang-ups about it as I was able to describe how different Lymphoma is compared to other cancers. A lot of consultants will say that living with Lymphoma is like living with any other chronic health condition but the difference is that unlike MS, Parkinson’s and even type 2 diabetes where these conditions tend to deteriorate with little or no hope )I see fiends like this) Lymphoma is completely different.

Although we did not tell my and my wife’s mum’s until it was obvious that something was up…… there is cancer history in the family and they did not have a good ending so it would have put the mum’s down a dark hole.

As for my 2 girls, we seen them both graduate, get married, have 4 granddaughters between them and they both run very successful family run companies……. there is lots of hope,

Good morning Mike

can I start by saying again how inspirational your sharing your journey with me is. It has been a beacon of light down a dark hole. 

i spent some time on the lymphoma website last night. It is so kind of you to reference material for me. This watch and wait terminology is very hard to get my head round. I suppose it’s up to me to monitor my own self. I seen the lymphoma website regarding how to check lymph nodes. Today I feel more informed and dare I say empowered. What you have gone through with treatments is actually mind blowing. 

I have spent most of my time worrying about my sons, finances, my husband. Also had very dark thoughts of end of life care. So to hear such things as your daughters what you have had the blessing to experience is just off the scale fantastic. 

both my parents are dead as is my husband’s. My older son lives in France and is married. My youngest is just about to sit his exams. In my heart I feel it’s the right thing to do to tell them. I feel I need a lot more insight into lymphoma first but you have guided me greatly so thank you  I welcome all your input. 

I work a full time job I run an accounts department and process the payroll so my job is distracting me  which I’m grateful for  

i was telling my husband your journey too  I’m sure it was tough all that chemo and stuff  I’m frightened of it all 

Travel insurance is something I’m looking into too  it’s my husband 50th next April  I’ve seen things on here to do with travel so I will hopefully find some guidance  

thank you again for everything 

Hi Donna69 ..... the sun is out way up North so been taking some time out.

Good that the posts and links are helpful.

The Lymphoma Action (LA) site is excellent and I would say that any question you have just put it into the search tool at the top of the site and it will bring up all the relevant articles. 

Yes - Active Monitoring is challenging....... but you will get into it.

Back in 1999 when I was first diagnosed it was good as there was no Dr Google  so I had to trust my medical teams......

But I worked in a very demanding teaching job on a full time table for the first 12 years of my diagnosis and retired early at 55 as things were just starting to kick off...... I did not get medical retirement as it was seen that 'my type' of lymphoma did not fit their criteria as it was not seen as life threatening or physically and mentally challenging......!!!!!....LOL 

Do seriously look at the opportunities to 'talk' with others through LA - there is nothing better then doing this.

((hugs))

......this is what brings sun into our lives when we have a bump in the road.

Hi Mike

i am from up North too. However I’m from up Northern Ireland lol. To hear that you worked all those years after diagnosis is mind blowing especially in a challenging teaching environment. It’s proper sad to hear that you couldn’t access medical retirement. This won’t be available to me either. I have worked all my life with a 10 year spell living in London. I came home as my mother had Alzheimer’s. 

I reached out to macmillan benefits advise yesterday because of where I live  things are somewhat complex. 

your granddaughters are little crackers. Is there Irish there somewhere. Seeing that gorgeous red hair. 

Doctor google has a lot to answer to. I have a troublesome sore right leg with major pins and needles and numbness. According to dr Google says May have advanced lymphoma. I have reached out to my key worker but no word back yet. I was always of the temperament that I shouldn’t bother the health service. I am realising I now need to change that thinking. 

no mr golden sun here today. Hopefully it’s a good day for you Mike?

thanks again for reaching out it’s got a real value to me. Donna

Donna, as far as we can see their roots are Scottish through and through…… but who knows !

The NHS system is there for us and we must use it to its full……. good on you talking with our benefits team….. they are great.

Oh it’s chucking it down to day but this will give the garden a good water and like NI we benifits from the beautiful lush landscape.