Maintenance after O-CHOP

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Hello everyone, I had been anxious about being told by a consultant that if my end of treatment PET scan showed complete remission, I would not have maintenance treatment. I had posted here about that, and thank you to everyone who replied.

I had my face to face consultation with my consultant this week. This was my own consultant, not the one who had been doing most of my phone appointments and told me the above information. My PET scan was clear, showing complete metabolic remission. It was great to see it on the screen, so different to my original one last autumn!

I had gone in prepared to push for maintenance, having read around the subject, even to ask for a second opinion at another hospital locally which I know is still offering maintenance. However, my consultant offered me the option straight away, and asked what were my thoughts! Of course I said that I would want it.

I realise the concerns with ongoing immunosuppression, especially with Covid, but I feel that I can live with this, especially as Covid numbers are going down and more adults are being vaccinated. I have my own second vaccine this week. My feelings are that maintenance should keep me in remission for the next two years at least. Like many, my initial symptoms were vague, I had no external lumps or bumps, so my concern was always, how do I know when I relapse?

I'm now in the process of letting family and friends know my good news. Nice to have some!

  • I had a different type of NHL and went straight into Stem Cell Transplant and maintenance was of no use to me but let’s look for others who have been on this path to come along.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • really good you got what you wanted and without having to fight for it, 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Yes John, it was a great feeling and at the time I could not believe that it went so well!

  • Well done sticking to your guns and let’s look for a smooth journey from here on in.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks Mike, it's going the right way anyway.

  • I've been on chemo with rituximab which is very similar, and have the same decision to make. I have had the vaccine but a test showed I have made no antibodies to it so I'm hoping that everyone else getting vaccinated keeps me safe. I am probably going to do the maintenance too unless the consultant can persuade me otherwise which I doubt. Good luck.

  • Good luck to you too, . I had my 2nd Covid vaccine this week and had horrible flu-like side effects for 24 hours. The first one gave me no side effects at all! I have an antibody test in 6 weeks so I'll see if I've made any antibodies.

  • Hi, I completed my O-chop end of last year, not without some dramas along the way! Massive allergic reaction to first dose of Obinutuzumab. Subsequent treatments ok and completed the 8months. Along the way though have had a number of lung and respiratory infections, tiredness, poor sleep etc and currently I am considering g whether to stop the maintenance treatment. Has anybody got any similar experience or thoughts on the matter