Hello

Hi again Fenix and well done navigating across to the group.

As I said on your first post I was diagnosed back in 1999 with my type of Low Grade NHL. It’s a long story but you can hit my community name to see my profile.

It’s very important to get that having a condition like a low grade Lymphoma is basically living with a chronic illness but the good thing is there are many treatments available if and when required.

In your profile you say you will be having RCVP or RCHOP. These treatments have been used fir a number of years and are very effective, yes there may be side effects but not everyone have these. You will see that I had over 750hrs of my main chemo and honestly it was ok.

You may find these links helpful Chemotherapy Treatment and Top Tips for the day of your Chemotherapy

It is important that you educate your family and for fs as this is a life long condition.

Good information is important so do check out the Lymphoma Action website.

I am sure you will have questions as you go through this so do ask them and we will help as best as we can.

Do you know the exact type of Low Grade NHL you have?

Hi Mike,

Thanks for your honest reply. I did have a brief look at your profile but honestly it was a bit overwhelming to read so I didn't get through all of it, but I can only imagine how hard it's been for you and your family.

I've been told that because I'm young and otherwise relatively healthy, then the side effects should be minimal. However I know young people who have really struggled. I really don't know enough about cancers (including my own) and treatments and it seems as though everyone has their own story/knows someone/had a friend who knew someone, etc, who had chemo. The stories vary so much. To answer your question, I would honestly need to check my paperwork to tell you the kind of NHL I have because I honestly don't know and am very new to this!

When you say it's a lifelong condition, is there ever complete remission or is the goal of treatment to keep it within 'normal' range/not too risky? I'm not sure if that makes sense? Thank you for the links, I'll check those out too. On a personal level, would you be comfortable sharing what kept you fighting through treatment and the side effects?

Cheers,

Fenix.

Hi Fenix…… yes my story is a challenging story but do remember that I have a very rare and hard to treat incurable type of NHL…. that at one point back in 2013 became life threatening but if you go to the end of my profile you will see that I am doing great and living as good a life that any 66 year old can….. go back and read my complete story as you will pickup some of the important aspects that helped my family and I get through this.

Yes it was hard….. but unlike most solid tumour cancers like Lung, Breast, Colon….. where having stage 4 as I had is very bad news l….. Lymphoma is a completely different cancer concept…… when it comes to cancers you can’t compare the stories you hear first or second hand with what you will have to deal with.

My treatment were extreme and look I am coming up to 6 years in complete metabolic remission and doing great…. until Sep 2016 I only ever had 9 months remission before I had to go onto my next treatment - but this is the nature of my type if NHL.

The fact that it’s taken 5 years before you needed treatment is amazing and a very good sign that your condition can be put to sleep again,

As you are young you have the advantage but it is important to find out ‘exactly’ what type of the 60 types of Lymphoma you have as these are oh so different.

Yes some types of Lymphoma are aggressive and are hard to treat but this is often down to the challenges of getting a clear diagnosis as Lymphoma is actually very difficult to clearly diagnose so people can be living years with their Lymphoma and it never picked up.

I talk with many folks on here and another Lymphoma specific support platform and some never ‘have’ treatment as it’s not needed. Others have treatment exactly the same you are are going to have and are years out with no further treatment and living normal lives.

The important thing you have to do is get your head round this, get to understand this condition well……. don’t even compare this to other cancers…… and don’t let ‘having cancer define you’ you need to define how you are going to allow your cancer be part of your life - not take over your life.

I am totally happy to answer any specific question(s) you have as this is the reason I stick around to help others.

Thanks Mike, it’s good to know there’s a community here to help.

i was 

i was diagnosed with stage 4 aggresive and also low grade 5 years ago after taken around 10 ltrs of fluid from my chest and my first roun of chemo the aggresive was gone it left me weak but feeling a lot better . Since then i have had 2 more rounds of chemo, will always be weak but i am now 75. so you may have a long time yet to do the things you like, i am of to costa teguise in a couple of weeks.

Hi hows your father, I see it’s your first post so welcome. Great to hear that your treatment worked well and fast - have a great holiday.