Ritriximab and bendamustine treatment .

You sound exactly like me. I was diagnosed in 2014 and had my first rituximab treatment around 3 years ago. It worked very well with absolutely no side effects, but when my lumps started coming up again last autumn I was booked in for rituximab/bendamustine starting in December. Not treat timing! However, rest assured it is working well and with minimal side effects. There are very effective backup drugs that help with sickness and to prevent infection. I was sick a couple of days after the first treatment in December, but that was partly my own fault for coming off the anti sickness pills too soon.  You really should take them for a week even if you don't feel sick. After that you should be fine. I've had two treatments now, the second was quicker than the first and with no side effects My hair is still on, and I'm well enough to go back to work after about ten days. I hope all goes well for you. Highlander will probably reply to you as well, and his advice is always excellent Good luck x

Thank you so much for your reply . I’m ok one minute and burst into tears the next . I had an allergic reaction to steroids and just thinking the worse . I’ve got 2 weeks until treatment but am so anxious everyday it’s making me ill. You hear so many horror stories that chemo is like bleach going through your body that burns etc . Or your won’t get out of bed for weeks . You have helped me so much . Can I check did you have ritriximab and bendamustine? 
when you had ritriximab before you were ok too ? 
you have helped so much . Thank you x

I look forward to hearing from highlander . I’m so grateful for this group x

Yes to confirm, I am on rituximab and bendamustine. I too heard horror stories and was very nervous going into treatment, but remember that  the treatments, and support drugs, are getting better all the time. Steroids make me very jumpy and I found it hard to sleep but it is worth asking if the dose could be reduced. I took mine very early in the morning and then mid afteroon so that it didn't affect my sleep too badly. This group is great, I'm really glad I've joined.

Thanks for confirming Rose . You have reassured me so much . I had to have steroids a few weeks ago . They gave me psychotic episodes( as my dr prescribed it). 
I want to stay away from them . I’m a workaholic and if I can get back to work , I feel that would make me feel so much better . 
I hope you’re feeling better . Are you still having treatment ? When is your next round ? So lovely talking to you x 

Hi Roxy123 and a late welcome from me to this corner of the Community. I am Mike Thehighlander I was diagnosed in way back in 1999 with a rare, incurable but treatable low grade type of NHL Stage 4a so I know this journey rather well.

Sorry for not getting back to you sooner but we were out to our daughters for lunch then an afternoon playing with one of our 4 granddaughters……. I say this as an encouragement that even although you get a cancer diagnosis there is life whilst living along with your cancer.

You will indeed hear horrible stories of people having chemo, often these stories of friends and family going through treatment or friends of friends……. but you don’t tend to hear the stories about the many more people that on the whole have positive treatment experiences.

I am not saying that treatment is a walk in the park as you are looking to evict this unwanted squatter from you body so some persuasion is required at times.  

You use the word ‘bleach’ for describing treatment. When I was having my first 5 day cycle of my treatment a Pharmacist friend came in past the ward to see me “Just a few hours ago I was making up your chemo bags to be sent up for you to have - our educated bleach is rather remarkable and does an amazing job”

The first very important thing to ‘get’ is that Lymphomas like Follicular lymphoma are very treatable. Looking at good accurate information is important so you understand your condition so do have a look at this link about FL from the Lymphoma Action Site.

Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Online Lymphoma Online Support Groups and indeed a very great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

There are lots of different types of treatments available and R&B is just one of them. These are carefully chosen to suit your type of Lymphoma and presentation

I had over 600hrs of Rituxitmab during my main chemo (hit my community name to see my story) and had no real problems with it. Yes I did have to have lots of Antihistamines as I have some bad allergies so we had to be carful…… the positive thing about antihistamines is I slept through a lot of my treatments.

Rituxitmab is targeted (biological) therapy not chemo so tends not to be as challenging.

https://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/biologicaltherapies/monoclonalantibodies/rituximab.aspx

Brentuximab is a targeted therapy monoclonal antibody and an antineoplastic agent so it is a type of chemotherapy

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/brentuximab

R&B together are an effective treatment and do a great job in fighting your cancer

Most people go into treatment obviously expecting the worst but from my long experience on my years of treatment and talking with others many will say that the journey was not as bad as they had first thought based on the stories they had been told and the information they are given.

The main challenge I did have with my initial chemo was the developing Fatigue over the cycles but the important thing to remember that these challenges are all temporary and are not forever.

You will see that the group will be a great support so no question is small as we all know about the bumps in the road that have to be navigated ((hugs))

Highlander , it’s so lovely to be reassured by people that can offer advice . I’m feeling so much more positive now . I was first diagnosed in 2016 grade 3 treated with ritriximab. No side effects and treatment reduced lymph nodes back to normal size. But now I’ve had a flare up . I now have lymph node inflamed both sides of neck , armpit , and 2 under and above my diaphragm. Starting treatment mid February . 
Once  having ritriximab 1st time round , I didn’t think of it as chemo and breezed through no problem . Thanks for your reply x

Hello again, yes still in treatment, I've had 2 of 6 treatments, number 3 starts beginning of February.  I noticed a great reduction in the lumps after just one session so it is possible that I may only need 4 cycles, but that will be up to my consultant. I'm signing off for now as I need to relax in a nice bath (sadly without a glass of wine)! Hope it all goes well for you x

Hope your next session goes ok . Wishing you well and thanks for the chat . Have a relaxing evening xx

I did six ritux/bendamustines finishing last April. As chemo goes it's a gentle one. No hair loss is usual, and many don't have any side effects. I had more nausea than is usual, so am not a good example, but you'll probably sail through it.