Trials.

Hi here are 2 reports on the benefits of maintenance

http://www.bloodjournal.org/content/130/Suppl_1/486?sso-checked=true

And this this years confirms it https://news.cancerconnect.com/non-hodgkins-lymphoma/rituxan-maintenance-therapy-for-non-hodgkin-lymphoma-BA9MTLzMCE6UAvzqXlabyg/

Hopefully the FNHL gang will share their thoughts as its not straight forward as you will read, patients have a better progression free survival but only slightly better overall survival and as with all treatments the are some risks, though I think you may find many chose to have the 2 years maintenance because of the research and I only know a small handful of people who had to cease it due to adverse effects.

When the trial was discussed were the pro's and potential con's discussed as they should have been?

Also don't worry about 8 week check ups some people are on 3, 6 & 12 month check up when their disease is stable, I guess understanding your disease, the risks of an early relapse or not would be all part of the discussion if it were me making the decision, so perhaps a further discussion with the consultant may be in order so you can make a more informed decision if that has not been the case.

John 

Hi again Amanda, first congratulations on hitting remission, but rather jealous as this took me over 17 years to hear those words.

A trial is just that and if your team at one of your 8 week checkups find you show any changes then your team will act and whatever trail protocol that is in place will be implanted or just changed to suit where your condition is heading.

((hugs))

First of all congratulations on your PET scan results, I to have been given the same results but unlike you I am not taking part in any trials 

Put your faith in your team, ask the question to your consultant and team tell them of your concerns they will advise the way to go and put you at ease

I have always followed my teams advice to the letter but have questioned it sometimes and they have always been straight forward and honest, I don't doubt your team wil do the same

I am on the 2 year maint. cycle with injections in my stomach every 8 weeks, had 2 sessions with no side effects at all, my fatigue has dissapeared and I am walking between 4 and 6 miles with my dogs everyday

Good luck to you, sorry I could'nt be more help

Hi Amanda,

I finished treatment in mid June and I've had a clear PET scan too.   Not all patients like us go on to have maintenance treatment.

I'm not having maintenance treatment, not because I'm on a trial, but simply because I'm pretty allergic to the maintenance treatment drugs.  I'm sure nobody wants to give me any subcutaneously because every time I had it IV, even really slowly,  I needed big doses of antihistimines & steroids to suppress the allergy.  These feel quite disruptive to me personally.  The premed drugs make me unfit to drive, work, operate machinery, cross roads responsibly or hold a coherent conversation for about 36 hours.  I'm zonked. For me at least,  there are more disruptive drugs than chemo!

As a trial participant, you're contributing to knowledge about the benefits or otherwise of maintenance treatment.  But of course you can withdraw at any time for any reason.  Your safety and comfort and consent will be vital in any trial.   I honestly don't know whether my risk of relapse is worse than anyone else's, but I will continue with the regular checkups alone and see how it goes.

Best wishes for your healthy remission, whatever you choose to do,

Cecren