Follicular NHL

Hi Glann

I'm going to take a guess that the maintenance you receive will be rituximab.  I received it as part of my chemo but as I had an aggressive form of NHL I didn't have any maintenance regimen.

Following my chemo I still had to take prophylactic pneumonia and antifungal drugs for an additional 6 months.

The best advice on how much you need to cocoon yourself will come from your haematologist.  There were times when I was told not to leave the house except for medical appointments.  Two and a half years later I'm nowhere near as immunosuppressed as when I was having chemo but I'm still mindful that it's preferable to avoid infections where possible.  To that end, I still wear masks and practise good hand hygiene but I don't limit where I go or what I do.

Thank you. will find out more soon enough. I will check ..but it mentions that O drug I posted...so im presuming its still iv six times a year...? 

Obinutuzumab instead of rituximab - it's just a different monoclonal antibody.   Cyclophosphamide, prednisolone and vincristine are the chemotherapy drugs you're having (unlike CHOP, no doxirubicin).

I'm doing maintenance rituximab, which is very similar to your O drug. I've got one more to do and that'll be the two years up. The maintenance drug is nowhere near like the chemo. It doesn't make me feel sick or anything. I still feel tired but I don't know if that's the drug or the condition or what. It does mean we're still vulnerable to infections but I decided that I couldn't let my retirement pass me by so I do my normal things, just being a bit more careful than usual.

Hi. Thanks so much for this.  I am on my last chemo in February and I am not sure when maintenance starts. They reduced my chemo this week due to numbness and tingling..and my legs just would not carry me!  It is all daunting but needs must. Im retired also.  May I ask do you do holidays etc ? The way I feel Im not interested..but as you say live your best life you can. Are you at London base hospital..I lived opposite Guy's back in the day..In Kent now.  Best of luck to you.

Great that you are nearly at the end of your chemo. I don't go on holiday much, never have done really. I do travel by train to my daughter's and go to adult music classes. Pretty much do everything now. I am seen at UCH, University College Hospital. It's not far from me so I usually walk there. I too have been left with numb feet and slightly tingly finger tips but it's not too bad. Good luck with your next chemo.

Hi Mike, just thought I would update  you - and thank you again for all the good advice.  My walking has become more lengthy - yesterday a good half hour around a park and no bench required!. Since the chemo and steroids were reduced last session - I do think it has helped slightly.  I am on No. 6 on 17th February - scans booked etc., and an appt with the consultant in April - (albeit a telephone one)! Off course that might change.  I have had some helpful replies on maintenance - which has perked me up a bit!  - Also, I was going to answer someone regarding a uretic stent (as I have one) but could not find the post to respond to!  Still navigating myself around the site.  Spring is definitely approaching slowly and I am looking forward to getting out more and more and getting to see more of friends and family.

Hope all is well with yourself.  

Good to hear from you Glann and great that you are finding you can walk further. The body has to be re-trained so well done.

The wider community has over 90000 members covering every cancer type and this results in a lot of posts.

But every subject/word on the wider community can be searched for. Do try the search  tool at the top, put in uretic stent and select ‘anywhere’ and this will bring up all the older posts on the site and have a look.

I am doing very well and just home from a great but wet walk in the local forest but now watching the rugby with a coffee.

Over the past few months I have been going through various tests and scans for an unexplained pain in my left side…… I was to see the Colorectal Consultant on Friday and they were happy that this has nothing to do with any of my main organs and no lymphoma is showing.

My Prostate is slightly enlarged with my PSA slightly up but I have had 2 chest infections before and after Christmas so this can affect the PSA but he said that my Prostate felt ok so I will follow this up with my GP next week.

I was able to see my CT scan and we talked through my ‘most impressive Hiatus Hernia’ that was developed during my second SCT over 7 years ago. He thinks that as I get older the Hernia may well be pressing on nerves causing the pain….. but it is easily controlled paracetamol…. But we agreed that there is no way that the Hernia will be operated on as it’s in my chest, including all of my stomach and most of my pancreas gland.

I call this my SCT left overs……. a small price  for life.

Have a great weekend…… come on Scotland  

I had a ureteric stent when the lymphoma came back in 2020. It was seen on scans that a lymph node was squeezing the ureter. Although a scan showed after two chemo treatments that the node had gone back to normal, they wouldn't remove the stent until chemo was finished. I hated it. It felt like I had a urinary tract infection with urgency and pain for the whole seven months. How is yours?

Hi.  Ditto, but fortunately mine did settle down, and yes they did say that it would be removed after chemo. I am on No. 6 next week, and I have had a midway scan after No. 3 and end of month an ultrasound is planned.  I have an appt to see the Urologist in March. I hope you are well and I believe you have finished your two year maintenance?  I have that yet to start - hopefully my scans are ok - don't know nothing yet until I see or hear from Consultant in April!! My main bug bear during chemo for me - terrible legs, to the point it is quite debilitating - but I do what I can everyday in respect to walking etc.  I have a list of questions for next week when I see the CNS!  Thank you for your response.  It is really helpful when someone else has "been through similar" - Please keep well.  I will update as I get going.