Low grade non hodgkin's lymphoma

Good morning  and welcome to our corner of the Online Community but always sorry to see folks finding us.

I am Mike Thehighlander and I help out on our Lymphoma Forums. I see from your profile that you have been diagnosed with Diffuse large B-cell lymphoma. If you hit this link it will take you to our dedicated DLBCL Forum where you will meet folks on the same journey.

The answer to your question I say a big YES. Yes there  are lots of treatments in the Haematologists tool box that will MORE than control your condition and I am sure that johnr will come along and tell you his 10 year story.

I was diagnosed with a rare type of Skin NHL in 1999 and was told that I would never be in remission and would one day get me in a box......fast forward to September 2016 I was told that I was in Remission and NED (No Evident Disease)..... a long story but you can see it in my profile by hitting my forum name.

I see from your profile that you are on Watch and Wait, I was in your shoes for 14 years and lived and worked a normalish life before the real treatment was required.

When watch and wait is suggested for you, it means it is in your best interests to keep an eye on your lymphoma and to save other treatments for when they are needed. There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.

Keep posting as we are around to help out.

((hugs))

Hi I assume your type is FNHL which is classed as an indolent type which is slow growing but also can wax and wane, so the are no firm rules on when to treat, though current thinking is to leave treatment as long as possible and depending on presentation and symptoms that will inform the treatment plan. The are a whole range of options and some very effective treatments which we can share more on when the time is right. Some people struggle to get their heads around having cancer and not having treatment, others see it like a chronic disease that is treated when it flares up and are able to get on with life. You will find your way to deal with this and talking to others who have been in your position often helps. 

Whilst the is still no cure the are a number of trials looking at new drugs and new combinations to see if the magic bullet can be found.

Ask any questions and someone is always around to reply, we are here to help as and when needed.

John 

Hi johnr - so am I getting the wrong end of the stick again?..... still learning the terms and navigating the confusing Lymphoma world.

So  we also have a Follicular lymphoma forum as well.

As you see there are folks around to help out even if some of them go up dead ends.

((hugs))

Hello, Thank you for the links Mike and the reassurance. I get little moments where my head/thoughts get stuck wondering whats ahead & i need to focus on the now.

All the best. 

Thank you Johnr & Thehighlander. I've not heard of the Follicular word. Yes I'm very lucky to say mine is slow growing and very happy to watch & wait.

I would like to make sure I'm as fit as possible for when i do need further treatment but very tired and i dont have much energy, i dont want to give myself an excuse to be lazy. I have to rejust my approach to keeping active inbetween naps.

Hi Mike, DLBC is an aggressive type so as its B cell and not T cell and indolent, most indolent B cell types are follicular though the are others though and we never stop learning, its only 6 to 7 years ago that we found out mantle cell could be indolent when it was always thought to be aggressive.

John  

Hi again, lots to learn and medical speak is a whole new language, certainly wort asking which sub type of NHL do you have, that way we can be sure to be giving you the right advice and sharing similar experiences, I had an aggressive type so went down a different pathway though the treatment I had is still given when needed for stubborn FNHL.

Fatigue can be linked to the disease and is classed as a "B" symptom so do share this with your consultant, the other cause can also be low vitamin D levels which are know to be linked to lymphoma, so do ask to have your levels checked because if it is due to vitamin D levels being low that can be addressed by a daily supplement on prescription from the GP.

The other advice is do try to be active it actually counters the fatigue as odd as that seems, but don't fight it as it makes it worse or it did in my experience.

John 

Thanks for this John...... this Lymphoma lark can be rather complicated.

(you a GOT fan?) information is key so we would always say keep a note book or diary for you to put all the questions you need answers for from your team....... and all the answers and information you get as this brings order to this rollercoaster.

((hugs))