Hi everyone, following 6 months of various tests I’ve finally been diagnosed with low grade Follicular Lymphoma. Not great news but having done my own research it was something that was on my radar as I’ve had no other symptoms other than some enlarged lymph nodes.
I’m on watch and wait, but with an option to start Rituximab, the doctor said he’ll let me decide this as some people just want to start some form of treatment, as it feels alien to have cancer but do nothing about it. Does anyone have any experience or thoughts on this? If it’s something that can delay the need for more serious treatment, why wouldn’t we do this? What would be the negatives for starting now? Had anyone experienced bad side effects from this treatment?
Any advice very welcome!
I confess that this seems strange advice from your doctor ie letting you make the decision on whether to start rituximab treatment or not. I believe most other doctors would more strongly advocate for “watch and wait” ie to see if and how you progress and how troublesome your symptoms become. Once symptoms become a real problem and hard to live with, treatment would then usually start then. There are no downsides to watch and wait (a slow growing indolent cancer like follicular lymphoma does not often require urgent and immediate treatment) but in my view there are some downsides to starting rituximab treatment - it does reduce your immune system so you are more vulnerable to infections (including Covid ). And we can only tolerate a certain amount of rituximab over a lifetime and with follicular cancer , you are likely to need periodic bouts of treatment (often with years of no treatment Inbetween). So if I was in your situation, and if my symptoms were ok to live with, personally I’d opt to stay on watch and wait as long as possible. (I know some people may find it a challenge mentally to be on watch and wait only but for slow growing lymphomas that is the best advice I believe)
(I too have a slow growing lymphoma, not the follicular type though).
Good luck in whatever you decide. You may also want to call the Blood Cancer U.K. helpline and talk it through with them.
Thank you for the advice! The doctor I saw was of the same opinion, in that he said he’d recommend waiting for my next bloods and scan in 3 months time, to see if there’s been any change. But he did also say that some people struggle with not doing anything when given the diagnosis, and that if I wanted to start on Rituximab he’d support it.
I appreciate the info though, I suspected there would only be so much of the treatment you could take, or that it might become less effective over time. I’m going back for another chat in 4 weeks time so I’ll discuss it with him then, as you say if I feel fine otherwise there seems little point in starting any treatment, it’s just goes against my natural reaction of wanting to attack it!
Thanks again.
Hi @Lanky I am so glad that you have posted .
You have asked a really logical question and perhaps it does not matter which blood cancer we might have.
I attach a kink from the Blood Cancer UK website on ‘watch and wait’ or ‘active monitoring’
Active monitoring (watch and wait) | Blood Cancer UK
I have to say I don’t have the dilemma you have because I have not been offered treatment, but I have been a very lucky girl and been on watch and wait for 20 yrs.
In that time treatments have come on in leaps and bounds.
However I found it very difficult to explain to my work why I was not immediately having treatment as I did not understand either at the time!!
@CaroleCW has given you a brilliant reply and I hope others will share their experiences.
Please do keep posting how you are getting on and really look after yourself
Hi Erica, thank you for the link! I now have some questions prepared for my next consultation, I was a little shell shocked at my previous one, my brain stopped working 
20 years is amazing, and great to hear, may you have many more!
I’ve also had similar conversations with my employer, as to why I’m not having any treatment, whether there will be any benefit in using our company private health insurance etc. It’s a strange time, but I feel I’m coming to terms with it, along with the watch and wait approach. I’m also under no illusions that there will be times when it will suddenly hit me, but I feel lucky to have the support network I have.
Have a nice weekend!
Yes @Lanky we are here for the highs and the lows.
When I was first diagnosed and put on ‘watch and wait’ a great friend of mine offered me her life savings so I could get treatment privately, what a friend.
You certainly find out who your friends are, it still brings a tear to my eye now.
Yes, it is a strange time for you, that’s natural.
It really is an emotional rollercoaster, there is also a lot of waiting and not knowing, my emotions and thoughts are still all over the place.
Yes, have a nice weekend and be kind to yourself.
Thank you for this. I am in similar situation currently with low grade stage 3 N-H Follicular Lymphoma and have been offered the 4-week Rituximab treatment as an option to watch & wait. I’m conflicted as to if or when to take up the treatment as I’m not currently suffering any symptoms - in fact, like you, I’m feeling a bit of a fraud!
Is it better to start sooner (whilst I’m fitter& stronger to deal with effects) or wait until my health deteriorates?
Any help or advise appreciated, thank you.
Hi @ChrissieB welcome to posting on our forum.
Yes, you have a dilemma and the decision has to be yours when you feel ready to make it.
I hope others on here can share their experiences to give you more help.
Have you got a specialist nurse, your GP or consultant you could talk it over with as they know your whole medical history?
Perhaps a pros and cons list is a good idea as you have said.
You might feel a bit of a fraud, but I would say you definitely are not.
Our hidden conditions are so difficult, aren’t they.
The Blood Cancer UK support line is there for you if you would like a sounding board on 0808 2080 888.
Please do let us know how you get on and really look after yourself
Hi Chrissie,
I opted for the Rituximab treatment in the end, once a week for 4 weeks. I’m 46 and otherwise fit and healthy, whilst my enlarged lymph nodes weren’t causing too much discomfort I was very aware of them whilst exercising and sleeping, so wanted to try something.
I had very few side effects thankfully, only a slight reaction on my first infusion when they increased the speed for the 2nd time, but they stopped it for a short while and then re-started again and everything was fine. The subsequent treatments were all okay, and much faster than the first.
The only thing I noticed was being more tired than usual on the day of treatment, due to the antihistamine.
Everyone’s experiences are different, and I could have stayed on watch and wait for however long, but mentally I wanted to try something. I’m now waiting for a follow up PET scan, but I’ve noticed that my lymph nodes have reduced in size, so fingers crossed it’s delayed the need for anything stronger.
Wishing you all the best in whatever you decide 
Thanks for your encouragement Erica. It can be very confusing taking in all the new information, the implications arising from decisions made and possible outcomes. Like Lanky, I think I’m inclined to wait until my next consultation, before making my mind up.
I’ll do my best to cast my worries aside and try to take each day as it comes. Thanks again for sharing your own story.
Hi Lanky and thanks for your response to my post.
I found it to be quite encouraging, to know that there’s someone else with a similar lymphoma and who’s had the same dilemma.
Although I’m almost 20 years your senior, I don’t have any symptoms at all right now. My blood cancer was only discovered when I attend a routine mammogram and was initially thought to be a breast cancer. A PET Scan detected active lymph nodes under my arm and also in my abdomen, although I can’t feel them at all myself! Had I not had the mammogram I’d have been totally unaware of this and a couple of other, unrelated issues. I sometimes find myself thinking that being oblivious may have been preferable!
I’ve several other appointments to attend before my next haematology one in September so think I’ll get those out of the way before making a decision but appreciate your encouragement and will follow any updates you may add to this link.
Wishing you well in your post Rituximab treatment.