Rituximab/Bendamustine - Weight Loss during 1st Treatment Cycle

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Hi, Everyone

I am two weeks into my first cycle of Rituximab/Bendamustine treatment for FL.   I am not experiencing any nausea or loss of appetite (luckily) but have seen a meaningful drop in my weight (90kg to 84 kg) for the last two weeks.  Some weight loss expected due to reduction in retained fluids, but this seems excessive.  

Anyone experienced something similar?

  • Hi  and welcome to this corner of the Community.

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

    I have a different type of NHL diagnosed way back in 1999 with a rare incurable but treatable type of skin NHL Stage 4a and although my ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.

    I also experienced a lot of weight lose. Over my first 2 cycles (6-7 weeks I lost about 27kgs and like you I was not sick and eating well.

    Some people can actually have a problem with putting weight on due to the steroids but it just depends on how everyone’s bodies metabolism reacts.

    But as long as your team are happy with this - relax

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks, Mike.   Appreciate the welcome and advice.   Just starting my journey and trying to stay positive and focus on what's important.   Weight has stabilized over the past week.   Getting ready for my next round of treatment next week.

  • These early days of the journey is full of twists and turns, new experience discovery’s and these all bring an understand as to what your personal journey is going to be like - all the best with the next treatment.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Nervous Tomorrow I get pre treatment & Tuesday 17:5:22 I start my Treatment 
    Will I lose my hair it’s long Blond !

    Will I be sick , !

    I am alrdy 80% disabled  I am trying to do this at home alone out of choice , I have incredible daughter who I realise is just over caring not pushing asi thought , just had 3 days together to reallBellhoptalk honest & I should realise I’m so lucky , if I am not Vomiting I am used to exsausted s had chronic fatigue syndrome for last 2+ years & now no my lymph nodes have been pressing on my gut it’s wBellhop I cannot eat much , I have them pressing on my aorta as well so my wheezing is not just my asthma , knowing all this helps me understand how my situation has changed so much , & ye I expect more chBellhopges this group helps so much I have watched since I got NHL Follicular B , but not said much Highlander your incredible you give me so much hope as we know there is no cure but I would like to be baBellhop to watch &= Wait , Good luck to all on any C jorney as I’m learning we all have diffrent problems , treatments ect , so let’s all try ring The Bellhop‍♂️PrayHeart

  • Hi , everyone on this group are amazing and we all bring a different flavour to the table.

    Based on my various treatments I would be surprised if you don’t see an improvement early on and as for side effects…….. 8 years on from my main chemo I am still waiting for the big side effects to happen Stuck out tongue winking eye….. but my hair was like snow on a warm morning ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi purrwoman I was diagnosed with follicular lymphoma a sub type of B cell lymphoma end of 2020, I was put on watch and weight until July last last year and then received chemo for nearly 5 months O-CVP. I was terrified but on receiving the treatment had very few side effects. I did not lose my hair even though was told I would, ate normally, no weight loss. Was advised to drink 4 pints of water and walk each day which I did. Also read online Macmillan notes on my diagnosis and was informed I could get a second opinion which I did. My consultant at the Royal Marsden had much more experience than the one I had locally. It’s now been nearly 6 months since having the chemo but have regular check ups every 2 months. Everyone reacts differently to the chemo but it’s not as frightening as it seems. The care of the nurses is first class and your haematology nurse will always be there when having treatment for any concerns. At the end of my treatment I had a clear scan so hope it will stay that way. The NHS has been brilliant no waiting times and the cost of my treatment was thousands. You will get through this and get your life back. 

  • Really good to hear this. I have stage 4 non Hodgkin’s follicular lymphoma which has spread to my bones.  I am about to start O Chop within the next three weeks.  Was given the news yesterday and still reeling. Having got my son through really harsh chemo for Hodgkin’s ten years ago I know how hard it can be. He is fine now so of course worth it all.  At 75 I am apprehensive but am just going to try to build up my strength with what is to come. Reading your post made me less anxious. I guess getting my mind calm is a major part of things.  

  • Hi  and I see it’s your first post so welcome to this corner of the community.

    I am pleased that you have found this discussion helpful. The initial ‘thought’ of going through treatment can be challenging but these drugs and support meds have come a long way over the years.

    You have seen what these various treatments did for your son and let’s look for the same result for yourself.

    I had my R-EPOCH (a big brother of the one you are getting) back in 2013/14 and it did the job but I was always having to move onto other treatments as my type of NHL is rare (hit my community name for my story)

    You may find this link helpful Top Tips for the day of your Chemotherapy

    Always around to help out and answer questions as best as I can.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you. The link you sent look very useful. I’ll have a look at your story too. It is good to hear from you. 

  • I have just joined on here as I am going through a terrifying time right now about my mum who is also 75 like you and has now been told since her first diagnosis in 2005 that the lymphoma has spread to her bones and spleen, I am beside myself with worry and fear! If ever the lymphoma starts to get bad they have zapped it over the years but it’s all been pretty good for a long time until this devastating news this week! Her chemo starts on December 2nd, Retuximab, then a chemo where her hair will fall out followed by steroids, this was all discussed over the telephone and unfortunately I was not there to hear it all. I am so incredibly frightened, the specialist said “I will get you through this like I did before” but my mind is working overtime!!! I would love to hear how your progress is going with your treatment and I pray you are doing well. I would love to hear from anyone going through this to keep me positive and strong.