Rituximab/Bendamustine - Weight Loss during 1st Treatment Cycle

Hi Darcy8 and welcome to our little corner of the Community. Sorry to hear that your mum is back on the treatment rollercoaster..... if it is Follicular Lymphoma she has, it's the nature of living with a Low-grade non-Hodgkin lymphoma.

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a so although my Lymphoma ‘type’ is different from your mum's I do appreciate the challenges of this journey rather well.

Over my 23 years I have had many a Relapse....... but the words of her the specialist “I will get you through this like I did before” honestly ring true in my journey.

My type of NHL is rather different but in late 2013 my body was about 70% covered in tumours (where your mum's growth areas are inside her body.... my growths were on my skin)..... ut I also had a brisk sized growth in my neck and cancer cells in my Bone Marrow...... a plan was put in place and eventually I achieved remission in Sep 2016 and still am in remission - the longest remission I have ever had...... so this can be done....... and age is no barrier. I was talking with someone a few weeks back on another Lymphoma support platform where their parent had relapsed and had just finished her Stem Cell Transplant, she is 80 years old and is doing great.

You can see my story by hitting the link at the bottom of my reply but based on my journey I can truly say is that even in the most challenging circumstances come along 99% f the time there is a new treatment available to get things back on track.

You may want to consider putting up your very own thread as this helps keep your support in one place.

Keep posting and asking your questions as we are here to help you navigate this journey ((hugs))

Hello Highlander, I cannot thank you enough for your kind and incredibly positive reply, it brought tears to my eyes, you are a real inspiration with all what you have experienced and I am so grateful to be able to communicate with you and the fact that I found this amazing forum. I have been living in fear over the last few days, terrified and frightened for my mum and the future but these posts I read on this specific Lymphoma are incredibly positive and help me to get my strength and focus back to be able to support my mum through her treatment next month. I was in total shock to hear it had spread to the bones and spleen, I always like to think it’s kept at bay and no changes over all these years other than a tiny zap here and there when necessary, this hit me hard let alone my poor mum! My mum is incredibly fit, healthy and only looks in her 50’s bless her, she is strong and positive as she always has been, it’s me that’s the ‘super worrier’. I hope to hear from others that are going through the treatment right now for this stage of Lymphoma, I see another member has the same diagnosis with the bones and hopefully I will hear updates on how their treatment is going, this forum is amazing, kind, caring, honest and supportive, thank goodness I found it! I cannot thank you enough for your reply, you take care and I’m sending you the biggest hugs back. 

Hi again Darcy8 and do call my Mike.

I am pleased that you are finding the posts helpful and I always think that the more positive stories you read the more you can step back from 'the edge' and help stop you catastrophizing (is that an actual word?)

Living with an incurable but treatable Low Grade NHL was once described to me by my SCN (Specialist Cancer Nurse) as having a life long chronic health condition but the up side is unlike many chronic health conditions like MS, Parkinsons, heart conditions...... Low Grade Lymphomas have many treatment options...... other conditions don't.

Yes this group is great but at times it's not that busy (thank goodness) so to widen your support base you may want to also check out the Lymphoma Action website.

Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where your mum can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

((hugs))

Thank you so much Mike, I am incredibly grateful to have met you on here today, I feel calmer and and so much more positive and all thanks to you, I will be in touch for sure and will certainly look into the other links you have mentioned, big hugs right back to you :)