R-Bendamustine Treatment

Hi and welcome to the Online Community but always sorry to see folks finding us and its a 'fitlike' from me in Inverness to you in Aberdeen ;)

I had a different brand of Non Hodgkin's Lymphoma with totally different treatment (see my profile) but on the whole the side effects you have had are all normal and will come and go over the rest of your treatment.

You do need to expect the fatigue to increase as you go through the cycles but keeping some sort of activity going will help a lot. Your recovery time post treatments will most likely take longer with your immune system being slower to kick back in so infection risks will be an issue post your last treatment.

As for your tickets?, as you say everyone is different but it is a good question for your team...... for me I was on a long ban from public places post treatment.

Keep posting as we are always around to help out and lets look for the rest of your treatment to do the job.

Hi Mike, thanks for the welcome. I have been a lurker for a few years since being put on watch and wait but this was my first post. 

I read your profile, it sounds like you have had a really rough time compared to myself and my 4.5 years of watch and wait and 1.5 days of chemotherapy so far. 

Thanks for your feedback, I guess i will just have to see how i feel after my second cycle and make a decision about the tickets, although deep down I know I shouldn't go. I was really looking forward to Scotland v Wales at Murrayfield, it would have been my first time to a 6Nations rugby match but I understand it isn't worth the infection risk. I only bought the tickets about 2 weeks before I knew I was starting chemotherapy which is annoying.

All the best. 

Oh 6 nations Scotland v Wales at Murrayfield!!!!!!

So Murrayfield can not be classed as a confined space, yes lots of people but my mind is way down the mask with a scarf covering it.......but that’s me and Rugby.......but cold!!

Talk with your team but as you say you have to keep your eye on the greater good in all this.

All the best and keep in contact.

Hi Blocks,

i am on a similar treatment to yourself (Obinutuzumab + bendamustine) and have my final 6th cycle tomorrow! (Obinutuzumab is the new rituximab apparently)

i too found that after the first week I started to feel normal again and by day 10 or so I was back out running etc.

however, things did seem to get slightly worse in terms of fatigue from cycle 4 onwards. Not drastically, but to the point where I was feeling tired for 2-3 weeks after instead. (Although I did still manage 2 weeks off/2 weeks on work routine -just).

i am a Tottenham Hotspur season ticket holder and decided not to attend any matches whilst on treatment, and I’m delighted our new stadium has been delayed as I’m planning to attend again in March.

i think personally don’t think you’d feel well enough at that point anyway, but it is a tough choice.

had Tottenhams first game at the new ground been at a similar time to your rugby match I probably would have made every effort to go, but any other game I would not have risked it.

best of luck with the rest of your treatment 

Hi Paul,

Thanks for the reply, best wishes for your 6th cycle tomorrow and thanks for the feedback on how Obinutuzumab + Bendamustine has impacted you. I am sort of expecting it to get worse, if I end up 2 weeks off/2 weeks on then I think I can deal with that.

Allan

Hi Blocks,

I am on the same treatment as Paul ( Jenko ) but based in Vienna Austria. 

I did really well during cycle one and two. Working full time and was even allowed to fly to the U.K. It is a very different approach over here. My haematologist just says “get on with life” so nothing has been banned. I work with 5/6 year olds so just imagine the bugs ......

However I have just finished cycle three and I have to say that has been much harder. However I am now half way through and all visible lumps have disappeared so that has to be positive. 

Nicky

Hi Nicky,

Thanks for the reply to my post and apologies for the delayed response, I am just getting over the side effects of cycle 2 which included an overnight in hospital due to high temperature. All my visible lumps have also disappeared which is very encouraging that the treatment is working.

Regards,
Allan

Hi Allan,

Sorry to hear that you have been in hospital but pleased to hear that your lumps and bumps are disappearing. 

Although the initial days of cycle 3 hit me hard I have to say that the rest of them ( so far ) haven’t been any worse than the first 2. I guess we just forget what feeling ‘normal’ is like - lol. When people ask me how I feel I can now list off a multitude of ailments that I now consider as ‘normal’ ...........

I am still very tired but have worked full time all of this week and am still hoping to fly to the UK next Saturday for my Half Term. 

My bloods were good last Thursday and I am now booked for an ultra sound next Tuesday. 

Hope that all is better your end now.

Nicky 

Hello Alan,

I've never been told to avoid people by my team, but to avoid anyone with colds, flu or infections, which was OK until New Year when I got a chest infection, that didn't stop me having my chemo, which is different to yours and everyone else's it seems (Obinutuzumab and CVP).

Much as I love rugby and wow would I love to go to Murrayfield as I've never been, I'd avoid it myself. Maybe you could get someone to do a swap for tickets next time round, then everyone's on a winner.

Good luck with your treatment anyway.

Thanks for describing this, Nicky. 

I start the same treatment next week, a month earlier than I expected.  I read the patient leaflet and the lists of side effects and reactions sound like the Plagues of Eygypt, but I'm not looking for trouble. I find it very helpful to hear how things work for different treatments.

It was a surprise to be offered BR, because I'm old and as far as I can tell, it's not a routine treatment in UK unless you're relapsing following other treatments.

Hope your programme is tolerable and effective!