Lasting side effects from bendamustine and rituximab

Hi Wrigley8064cc and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your challenges.

I am Mike and I help out around our various Lymphoma groups. 

I was officially diagnosed way back in 1999 at 44…with my first type of rare Low-grade non-Hodgkin lymphoma) (CTCL) eventually reaching Stage 4a in late 2013 when a second, also rare type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well.

I had over 600hrs of Rituximab but not Bendamustine……. along with a shed load of other drugs over my main 2 years treatment (late 2013 to late 2015) and your post treatment side-effects all sound rather normal…… the body is put through significant trauma and it can take far longer than you would like to recover…….

You are only a few months post treatment so you are in the early stages of recovery…… unfortunately you need to be a patient patient……. the main thing is make sure your team are aware of everything that is going on and where required they can help you out…… but the one thing they can’t do is speed up the recovery time.

Aches and pains are most likely down to muscle wastage and often nerve damage where you cancer was…… initially once you become more active the body fights back and it can be painful…… your stomach lining will have been stripped so this take some time to recover……. my eyes were hazy fir a good period of time and often had thumping headaches….. but you will get there.

My Consultant told me that going through the treatment process is like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.

Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality.

Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.…..

What type of NHL were you diagnosed with?

Are you in the UK?

Always around to chat.

Thank you Mike with such a lovely welcome 

I was diagnosed with follicular non Hodgkin’s lymphoma stage 3 , grade 1

its just so frustrating. I don’t feel any better than in did in treatment 

also, i never  had itching prior to being  diagnosed 

around my 3rd or 4th treatment  n had a few weeks of the most intense itching I have ever had. It ffinally slowed down but most things suggested by my oncologist didn’t really help much 

he really did not know why it started…..

now about a month ago, I started getting itchy.  Certainly not like before but certainly feel it  with such good results I can not understand what would start it 

the same goes for the sweats, except prior to diagnosed t was over the top  I had month after of suffering with constant sweats  about 8 days after my first set of 2 treatments, the sweats vanished  now as the itching started so did my sweats  again not like before but certainly there 

Wish i could just wave  a wand and it be gone 

You have made me a little settled  on explaining that this nonsense could still

be early in the healing process 

as you say I guess this patient needs to be more patient

The Lymphoma journey has 3 parts to it….. the first 1/3rd is the diagnosis, the second is the treatment and the final 1/3rd is the post treatment recovery.

A very high percentage of people find the final 1/3rd the hardest as the expectation is that life goes back to normal….. but it will take time to get to that new normal.

I was in severe pain leading up to my main treatment…… but I was on oral morphine and other anti-inflammatory brigs for a long time post treatment due to the nerve damage in my neck 

Also the problem with these treatments is that our bodies metabolism as well as our skin gets severely kicked off kilter…. as my great CNS said “on this journey there is going to be some challenges during the recovery as your bodies go through trauma….. but these have to be endured to come out the other end knowing that a lid has been put on your Lymphoma”…… I always reminded myself ‘what price would I pay for life?’….. and if it was to endure some temporary challenges….. fine.

Low-grade non-Hodgkin lymphomas like your Follicular Lymphoma and indeed my type of Cutaneous T-Cell Lymphoma fit into a strange category of the 60+ types of Lymphomas…..that my Haematologist said that needed to be seen as a life long chronic health condition.

He said think say diabetes, it is always there but fortunately with low-grade Lymphomas we have the tools for these to be put into long term remission……. but in diabetes you are on treatment for life and if things go wrong there can be severe challenges.

Due to me having to be treated for 2 rare T-Cell NHLs at the same time my main treatment journey was between late 2013 to late 2015 (although first diagnosed in 1999) and it was rather complicated (See my story) but I am now 9 years 10 month out from my last treatment, I turn 70 this year and living a great life.

You did not say if you are in the UK but if you are you may want to check out Lymphoma Action.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

As you will see, this group is on the slow side and this may well be down to the high profile of Lymphoma Action.

All the links I use are taken directly from their website and I have volunteered with them as long as I have with Macmillan…… so you may want to widen your support and information base by checking them out

They run various Support Platforms…

I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……

Their Closed FB group alone has over 5800 members and unfortunately you would most likely bump into me on there also ;)

They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course that gives you tools to navigate the post treatment world.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Always around to chat.

Thank you Mike for you wonderful message 

I am also your age as I just turned 70th is year Yikes!!!

I live in Canada. I am part of the closed Facebook groups but not sure which one you are speaking of  

I sure appreciate your wisdom  

It’s hard when family thinks that just because your treatments have finished , they think everything is back to normal   They were wonderful through the treatment. But now I get that feeling that they think it’s all done 

wish I felt all done…

Many thanks for your time and kindness 

As you are in Canada you would not be able to join the Lymphoma Acton FB group as it is purely for the UK.

It’s hard when family don’t get how difficult navigating the post treatment world is.

You may find it helpful to make a cuppa and have a look at this great paper….

After Treatment Finishes - Then What?

by Dr Peter Harvey as it highlights the post treatment milestones.

I know many people who not only read the paper but also give copies of the paper to family to help them get it.

Hi Mike 

Thank  you so very much for your reply 

I just finished reading After Treatments Finish

I so enjoyed it 

it’s refreshing to read someone else explain everything I am feeling  

I feel like I am on a boat all by myself with out a paddle 

I keep saying to myself …if only I didn’t have all these physical side effects , I would be normal 

obviously not the case  

I appreciate your time in replying  

I now feel like I have a paddle  I just need 2 on order to have a direction 

many thanks

Yes the paper is a great tool and when I post the paper, lots of folk will come back to me and say that they think that the paper had been written just about them.

But I would then always challenge folks to become proactive after reading through it and using it as a vehicle for change and life improvement.

I did this a number of years back when I first found it…… and still do to this day often on a 6 months basis.

So get a note book or some sheets of paper and put pen to paper.

Have a page per subject heading then start detailing the things you have done already to move life on in each area and then start to set some achievable goals to work towards. 

When you achieve the first goal on each lists, tick it off and then put a new goal at the bottom of the list.

By doing this you can actually see your progress and celebrate achievements.

When I say celebrate I do mean giving yourself treats and gifts........ you have life - celebrate it.

The headings would be:

What steps am I taking to regain trusts in my body?

What steps am I taking to regain trust in myself?

What steps am I taking to overcome living with uncertainty?

What steps am I taking to deal with the world?

What steps am I taking to regain mastery and control of my life?

Try it, the future is sitting in front of you - think about driving a car. The big windscreen shows the future, the past is in the little mirrors and is getting smaller and more fuzzy as we move forward.....if you concentrate on the past you crash.

Always around to be annoyingly positive ;)