What to expect.

[Jacksc06]

Hi I'm new to all of this. I am due to start Bendamustine & Rituximab Treatment in the next two to three weeks. Wondered if anyone could let know what I'm in for. Thanx.

[Cammie]

Hi Jacks

Firstly sorry to hear you are starting treatment shortly!

Secondly it's not as traumatic as you might think.

Rituximab is a monoclonal antibody which seeks out the cll cells by targeting the cd20 enzime that is situated on them. The Bendemustine is a chemotherapy treatment aimed at killing of the cancerous cells.

You will either go into a day case ward or may be asked to go in overnight. The treatments will be preceded by blood tests and once these are completed and checked your treatment will be slowly and carefully administered by the specialist staff. It is likely that the rituximab will be started on a slow drip to ensure you don't get any adverse side effects because of a rejection by your body. You may have been given antihistamine prior to treatment to ensure this doesn't happen. Once the med team are satisfied you are tolerating the infusion well they will up the speed of the dosage for you. I had no reactions with rituximab but some patients do. If you feel unwell or have difficulty breathing you must inform your med team ASAP. It doesn't happen very often!

You must also be aware that certain medications can interact so you should tell your team about all medication you may take including any over the counter meds. If you take blood pressure medication talk to your doctor before your day of treatment as Rituximab can lower blood pressure.

You should be given leaflets explaining the treatments and what to watch out for.

That's all the bad stuff lol

You may be at the unit for some time as the treatment is given over several hours so take a good book or your iPad etc to keep you occupied. You may also wish to take a sandwich and definitely take some water along its important you keep hydrated. If you have someone to accompany you all the better.

Once your treatment is finished you will be allowed home. Bear in mind that the drugs keep working for some time and you may feel offish some days later.

You will be advised what to do if you don't feel well and you should be given an out of hours emergency number if you need to call it when the unit is closed.

Make sure you keep a check on your temperature anything over 37 (the nurses will inform you of their protocol) you must inform them immediately.

Some patients sail through their treatment whilst others get some side effects. We are all different. Mostly it depends on what other conditions we may suffer with these are known as comorbidities in medical parlance.

The main thing in all of this is your trip to the cocktail bar will be successful in helping to control your cll.

What part of the U.K. Are you in?

Where are you being treated?

When were you diagnosed?

Keep us informed of how you get on and here is my best wishes for a trouble free treatment.

Best wishes

Geoff

[Jacksc06]

Hi. Thanx for the reply. Will post my progress

[Jacksc06]

Hi. Thanx for the reply. I am in Lincoln uk . Being treated at the county hospital in Lincoln. Diagnosed on my 55th Birthday November 2015. Many Thanx its much appreciated as this feels very much a voyage into the unknown.

[Aussiejock]

Jack,

I have just finished red 4 of BR. I have documented my experience on this site if you click on my name you should be able to read my experience. As they say everyone is different. I am 54 male in Australia. I lost about 4 days work so far during the chemo, but it is not easy.

My best tip, log your first cycle experiences as you will find that they experience will repeat every cycle getting a little worse each time.

Also take note of the premed and the side effects as they cause as much issue as the chemo.

Message me if you would like more.

[Jacksc06 in reply to Aussiejock]

Hi Aussiejock. Thanks for taking the time to reply. Will read about your experience.

[wroxham-gb]

Hi Jack and welcome. I see you only joined yesterday.

I am wondering why you are having BR, do you know? Is there any more information you can give us that you would be willing to share. You've had some good replies above, the only thing I will add is I had to go in to stay for 2 nights so that they could monitor the retuxinmab

Infusion in case of reaction. The message to drink plenty of water is good, for the whole six months and beyond. It will certainly help your kidneys.

Be prepared to hang around so wear comfortable clothes and as already advised take some food that you will enjoy.

I wish you trouble free treatment and it would be nice if you could let us know how things are going for you. Any questions or queries just ask. There are loads of us here to help.

My best wishes.

Sue

[Jacksc06 in reply to wroxham-gb]

Hi. appreciate the reply. My consultant said either FCR OR BR. we made the decision to go with BR as he thought it was the best place to start. I will keep updating with my progress when treatment starts.

[neurodervish in reply to Jacksc06]

Hi Jacksc06, If these questions are redundant or a bit late in the game, my apologies...

1. Are you seeing a CLL specialist?

2. Have you read or watched any of the info regarding "FCR versus BR"? Here are some links to check out: youtube.com/watch?v=wC6V_Wg...(Not working as expected?) and youtube.com/watch?v=jxGAh6W...(Not working as expected?) and cll-nhl.com/2013/11/fcr-ver...

The reason I ask is because it is my understanding that one gets the greatest benefit from their first CLL treatment (frontline therapy). If you need treatment again, you are considered relapsed or refractory.

BR is considered better for patients over 65, who are less fit, and who may not easily tolerate FCR. Also, I believe FCR may not be beneficial for certain CLL mutations. Chris Cllcanada can explain this much better than I can. I barely understand it.

[Jacksc06 in reply to neurodervish]

thanx for the links. I am under a consultant who basically said BR was probably best as I have other underlying health issues.

[scarletnoir]

This is the treatment I had, so you could read some of my previous posts on the experience.

Asking 'what to expect' is a bit optimistic, because we all react differently - but I guess your doctors feel this is the best option for you, as they did in my case. In summary:

I had 4 rounds, and am still in remission 4 years down the line - so, very good.

I got an infection after the first round, and as no white blood cells spent 9 days in hospital on drips - not so good!

I had one allergic reaction, I think to the rituximab - but not on the other occasions. Injection (adrenalin, I suppose) brought me round OK.

I had a rash for quite a while after treatment, probably down to the bendamustine.

So - it's a risk and reward scenario... in my case, I'm very glad I had it, despite the hairy moments. Good luck with your treatment - hope for a positive outcome.

[Jacksc06 in reply to scarletnoir]

Thanx for the info. asking what to expect probably was a little optimistic, as I really have no idea what may or may not be down the line. very much appreciate your reply it has helped me with my anxiety.

[Mild-Rover]

Hi,

I had this combo a few years ago and unless I got all the premeds I would get a reaction so it simply became routine to get an antihistamine paracetamol etc before treatment. A reaction is obvious and progressive in that I could feel myself getting warm and sweaty and folk could see me getting red - almost like a tide coming in. I found it was useless to fight it and just stopped the infusion got some more mess and restated after a pause and at a slowe rate at first. Yes my veins got " ropey " and difficult to cannullate after time. In summary it wasn't bad and I did benefit from the treatment . Good luck and take each session as it comes.

[Jacksc06]

Thank you. its good that people like yourself take time out of your day to reply. it helps with the feelings of isolation and knowing that I am not alone.

[Peggy4 in reply to Jacksc06]

Hi. How right you are. It is indeed the support from this forum that makes all the difference. I can offer no advice, still on W&W,but wish you the very best. Let us know how you get on.

Peggy

[Jacksc06 in reply to Peggy4]

Will do, I feel in myself that its time for treatment to begin.

[bigunwill2]

I was on W&W for 10 months. I had an egg size lymph under my arm. At age 68, I had 6 months BR treatment ending in April. Treatment reduced to 1 1/2 cm that I then had 12 radiation treatments a month after treatments. 3 months after radiation had PET scan that concluded I was in remission.

I had a yucky week after infusion and then 3 good weeks. I received a Nuelasta shot after each infusion to boost white blood count which stayed in good range until after my radiation. I had 3 months with blood counts barely in the critical range. During this time I wore a mask when I was out in public places. My counts are now out of critical range, but still not in normal range.

The only long lasting effects I have had are skin issue with itching and red bumps which the dermatologist has given steroid creams and solution that help. The other skin issue is reaction to mosquito bites, which cause small blisters to come in middle of bite.

[Jacksc06]

Thanx for the info. much appreciated.