End of maintenance treatment withdrawals

Hi all

Finished mt 2 year maintenance and having strange reactions to not having the drug in my system anymore. Anyone else having issues having completed maintenance on retuximab please?

  • Hi Elaine, as I never had R maintenance I cannot comment on life after treatment but did want to share its likely the drugs will still be in your system but reducing as your kidneys filter your blood daily. The is a formula you can use to work out how long this takes, sorry cannot remember it now, but I do know for my 8 cycles of Rchop it took around 30 months to clear my system of all drugs. 

    Can you expand and your experience and share these reactions as some of us may have experienced similar and can share and support you.

    John 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Hi John, I had maintenance Injections in my stomach every 8 weeks for 2 years as I had only been in remission for 8 months following my first treatment. Towards the end of each treatment cycle I would become fatigued and my treatment would give me a boost to feeling human again if that makes sense. Now it has all finished not only as the fatigue kicked in I feel absolutely wiped out, my appetite has gone and have been physically shaking.

    Thank you for your response

    Elaine 

    Elaine

  • Hi Elaine, I don't think I have heard people refer to having a boost after treatment, will be interesting to see if others who have had the R injection can relate to that. As for the fatigue that is a known side effect and it does become cumulative so give it time and try gentle exercise like walking it should eventually help. 

    Have you discussed these effects with the consultant or specialist nurse yet ? and don't be surprised if they dismiss them when you do, I would post treatment advice lacking as the focus was purely on getting patients into remission, which I totally get but many of us need help and support post treatment. 

    Hopefully as you adjust to being back on watch and wait you will see some improvements if not keep the conversation going with your team until you get to the point you are happy with the answers, its what I did when I struggled with fatigue and eventually got to see a specialist, who diagnosed chronic fatigue but more importantly arranged for help and advice to support me to manage it.

    john

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Hi John

    Thank for the advise, it does all make sense. I did speak with my consultant on Friday regarding my symptoms and as you said they were dismissed. The one thing he did say was that I needed the Pneumonia vaccine as my immune system will drop and he is writing to my GP to give me it.

    Being able to talk about my concerns here helps, share with others and hear how others cope.

    My next appointment is in 4 months but I have access to his secretary if need be

    Thank you

    Elaine

    Elaine

  • Hopefully some of the FNHL folk will comment as the is a good group who actively post these days otherwise keep posting as you need and Mike or I will normally respond.

    John 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Yes Elaine I am around but my wife keeps giving me all these jobs that have not been done over the past 5 years as I have no excuses to get out of them and don't snitch me up - lol

    Like John and as I had a completely different journey I also have not heard about the 8 weekly injections on any of the posts but lets see some of the others to come back to us..... do you actually know what it was called? as all information is helpful.

    As all my vaccinations were killed off by the Stem Cell Transplant I had to get most of them again but as some are live vaccines I can not get them all..........but the Pneumonia vaccine was ok, I actually had it in phases (Prevenar 13) at 6, 10 and 12 months but everyone is different as far as I can make out.

    Talking with folk who have walked the walk does help a lot....... a high percentage of family and friends will not have an understanding or appreciation of the physical and mental journey all this is.

    4 months..... now to try and turn the 'over thinking' button down...... From my expereance and I am sure the same with Johns, in the early days post treatment EVERY little health issue will be automatically attributed to NHL.....but this improves as you trust your body.

    You may have seen this, can't remember if John has posted this but I will just put it in for some light reading and a cup of tea.

    Enjoy getting ready for the best time of the year.

    ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Oh joy, something else to look out for, lol! There have been several people who have completed the rituximab maintenance and slowly build up their stamina.....I'm halfway through....pet scan January. I was quite active up until sciatica got me. Tend to plan one or 2 activities a day and schedule a nap if I can!

    I think we will all take our own unique time and probably no good to compare...depends on weight, joint pain, neuropathy, anxieties, sleep patterns and all those things we often took for granted prior to all this, plus we are older! Some people are back to running.....I couldn't do that before all this!

    Wishing you well, Lynda

    Another day survived

  • Hi

    I find your comments Quite offensive,,, I have been on a 2 year maintenance programme for over 2 years to keep my aggressive Lymphoma under control

    Elaine

  • Hi, I'm not sure what you find offensive, I'm a bit confused as it wasn't my intention to offend.

    Regards Lynda

    Another day survived

  • I finished my two years' maintenance in March and was told it would take 3-6 months until I began to feel normal "fatigue-wise",  I did notice a change come about June (whether that was psychological or not, I don't know) and I continue to improve, but still get shattered from time to time, albeit less frequently.  After my R-CHOP I was put on B12 injections, which help your energy levels if your have a deficiency - don't know if this is something your doctor has looked into?  

    Jan x