Follicular lymphoma

Hi Peter, I had an aggressive lymphoma so had to have treatment, hopefully the others who have the same type as you will share their coping strategies, in general terms some folk manage by thinking of it as a chronic disease which is only treated when needed, others though struggle with this, so I am sure you will hear a range of ways and differing thoughts on when treatment should start.

Re treatment, I would not rule it out, some of the newer drugs and regimes are not as toxic as those used 5 to 10 years ago and depending on what state your heart is in (they often do a scan to check) some of the harsher treatments may still be available even though they contain drugs that can cause heart damage. The main drug being doxorubicin or the red devil. Worth a discussion with your haematologist and check they are up to speed with the new treatments and trials.

Any questions just ask and someone will answer

John 

Hello John, mine is non aggressive early stage 3, I was offered radio therapy on my right groin/upper leg as the glands have swollen quite markedly, but in the last 2 or so weeks they've calmed a bit, this I feel makes it worth waiting a while and see what happens. My specialist is talking about at some stage going down the immunotherapy route, which holds out some good hope.

Good luck with your treatment.

Good morning  and a Thehighlander welcome to the Community.

As with John I have a different type of NHL. I was diagnosed way back in 1999 with a rare type of skin T-cell Lymphoma, no other symptoms just bad skin so it was treated as a chronic illness/disease. So for the first 14 years the condition looked like I had very bad Psoriasis and I often had a 70% body coverage.

My Dermatologist did tell me “Mike there is no cure and you are living with a time bomb that does not have a countdown clock and one day the bomb will go off and become life threatening” but I parked these thoughts and lived, worked and enjoyed life throughout these 14 years - it never held me back much, it was more an inconvenience.

I had lots of treatments over these 14 years including various steroid creams, 20 weeks every year (2/3 times a week) for UVB then PUVA light treatments - I must have had 900+ visits to Dermatology for clinics and light treatments and various retinoid drugs then in the middle of 2013 an uncontrollable tumour started to grow on my forehead and the rest is history...... (you can see some of our journeys by hitting our forum names)

Like John I am post treatments and for me my last treatment was 34 months back and I am now coming up to 2 years in remission. I meet my Dermatologist a few months back and his words were something like "well I am supposed to be the expert in this but what do I know about how things will turn out, I need to look at your condition in a different light from now on"

We are always around to support and all you can do is listen to your body and make sure you are getting the best, broad based information that will take you forward in this.

Johns not having any treatment.

I can vouch for the Immunotherapy aka Rituximab.

Apart from most people getting a reaction first dose it’s a breeze.

Thanks for that Doh.

I do worry now about this "getting a reaction! as every time I've had a injection/tablet/liquid thats had a reaction, I've been in a terrible state after.

So it would be nice to know what reactions everyone has had to this drug.

Well it gave me a sore throat and I got very hot and clammy.

There were two sets of nurses some in grey and some in blue.

The ones in grey were checking blood pressure and such periodically.

I told one of them I wasn’t feeling great they smiled and carried on.

Then one in blue noticed my red face, came across and said why didn’t you say you were having a reaction?

Can’t remember what they gave me, but it worked.

They then slowed it down a bit.

Only had the reaction on the first treatment every other was fine.

Good morning Peter. I had "Extreme" Rituximabing :) On Days 1 - 4 I had over 96hrs and I had 6 cycles with 14 days in between and I did ok with it - no reactions apart from getting very tired by the end.

But most folks will only get it as day patients with some having an over night stay on the first treatment so it is important that the first course it done slowly just to see how your body reacts. Some have inital BP and Heart Rate blips but taking s break and slowing down the IV fixes this but I am sure that the others will chip in as well.

Peter if you are wondering about Rituximab, the reactions I experienced were hives followed by a sore throat and it feels like your throat is closing, that was the first time, they stopped the infusion and gave me some fluids then restarted slowly and left it slow, it took 13 hours for the full treatment of rchop, most of which was getting R.

After that I had it slowly and the speed was slowly increased and I always knew when to stop them increasing it again as my throat would start, no hives though. A few times my blood pressure would drop but that was never a major issue.

Some do sail through having this drug and others sit both sides of the reaction spectrum, a guy having the same treatment as me was always booked on to a ward to finish his treatment of overnight as it took 24hrs to give him his dose. Until you get it you won't know and you may be surprised. The important thing when you do get treatment, is, to tell the nurses straight away if you do start to fell anything happening as they are used to it and know what to do. I tried to man it out first time which was stupid only lasted 15 minutes once side effects started before I had to tell them.

Thankyou one and all :), some very interesting reactions there, so as you would put it, its very much a suck it and see experience. My nurse knows that I have fluctuating blood pressure when I had my drugs with the bowel cancer, when it varied from 90/50 to 130/95 and all stops between, but they do know how to deal with it.

Peter - 'Suck it and see' lol.

When I was getting my first chemo including the R a good friend who is a pharmacist came up to see me and she had a look at the three bags and said that she had actually made up my chemo that morning.

She said "when we make these bags its all done a special air tight mixing chamber and we do all the work with these special sealed gloves so we never come in contact with the stuff. Even the made up bags are put into a air lock where they are decontaminated before anyone gets near them. Then they come up the ward and stick the stuff into your blood - the body is amazing that it can actualy deal with this educated bleach" lol 

If your team know your back ground they will take extra care.