Follicular NHL

Sorry to hear this, as you know I have never had maintenance so yes, your first port of call is talk with your team. 

Good that you are going to attend the Lymphoma Action Maintenance Zoom…. I don't know who is running this one (I have ran a few others in the past) but it will be a good place to ask your questions.

I am doing great, I got the all clear after my MRI and my Prostate biopsy so this is great but I will still be ‘producing’ Red Wine fir another week

great news Mike - I just felt like a moan, then I feel stupid, as you say no pain no gain!

HI Mike. Hope all is well with  you up there!  Just updating you on the Lyphoma Action group zoom meeting.  Don't think I got out of it what I was expecting!  Having said that, everyone attending that meeting on Maintnenance were experiencing different things, from various parts of the country.  I mean one person said she had to give her job up (teacher) and someone said to her if she travelled she could ask for a "maintnenance pack"  when questioned on this, it transpires, its an antiviral, antifungal and an antibiotic to be taken, well when I said those are the drugs I am on anyway, it caused a bit of discussion, as no-one was on them as a standard, and also most people were on the Ritaximab treatment, I have yet to find someone who has taken the Obinutuzumab drug!  I will be on my second maintenance sometime in June, (dates changed already) and it does look like I have to be pepared for a long day on the chair.  Just thought I would share this info, just in case, as you say, someone one here might be looking for this kind of info.  I still have a slight issue with my aches in the legs etc., and more recently, a feeling of stiff neck ache, like you can get when you have had a flu/covid jab, but I believe this is caused by steroids so I have emailed the CNS to ask for a reduction, like they did on my Chemo 5 - hopefully it will help.  I still don't have my appetite back to "normal" and my taste buds are lingering, but can't complain.  Weather beautiful and I am enjoying being out and about again, with family and friends.. stay well, and as you suggest, will definitely do the ocassional update.

Thanks for the update Glann as you see no one size fits all when it comes to treatments and how clinical teams approach treatment and support.

I noticed a discussion on the Lymphoma Action FB group with folks talking about having Obinutuzumab only…… not sure if it was as maintenance.

The journey is indeed full of ups and downs and we have to navigate them as best as we can….. let’s look for a smooth treatment this time. Weather has been amazing but a few good thunderstorms today so the garden is happy  

HI, so glad you are at the end of maintenance!  Hope all is going well for you.  I am still awaiting my stent removal which should be in 10 days times, then straight onto 2nd maintenance.  Think I might ask to delay it, as it all sounds pretty hectic with appointments.  Did you have predisnolone with your maintenance as a pre med?  I am asking as I was told I would not be taking steroids, but it is just as a pre med.  The steroids really affected my legs, a side effect I was not aware off - it was quite debilitating, but over the worst now, and hopefully the maintenance does not affect the legs in the same way!  As you say a long way back to recovery but hopefully, like you, keeping everthing crossed for a long remission, I believe it is possible!!!??  Keep well 

Glann, I had hydrocortisone steroid as a pre-med with the ritux maintenance. Good luck with the stent removal. I had a general anaesthetic for that and they checked for any residual inflammation and scarring. All was good. Such a relief to get rid of it.

Can't wait to get rid of the stent either. My ultrasound showed all ok and everything shrunk so can come out.  I am presuming you were an overnight stay?  I have maintenance chemo two days later.  Sometimes with my leg ache I feel I am still in chemo mode!  I know as you told me before, the maintenance is no way as bad as the other chemo!  Know I am on the mend as my hair is growing and they told me I would not lose my hair with maintenance.   Thanks for your response.  It's a great site to be able to ask a forum as people understand where you are coming from. Somedays you just get on with it and others you start overthinking.  Again, keep safe and well.

Hi Glann, I'm having my very last maintenance treatment of obinutuzumab in August. Can't believe its been 2 years! Treatments were always on a Friday. I was hyper from the steroids on the Saturday - got loads of cleaning and tidying done! Sunday always had a lazy day and then back to work on the Monday. The treatment takes around 6 hours each time but the time always passes quickly as the antihistamines they give make me really sleepy so I have lots of snoozes between blood pressure checks. 

Good luck!

Hi.  Many thanks for your response.  So glad your maintenance treatment is at an end.  Sounds like you have coped amazingly well.  Fortunately for me I do not work, so can take my time to "get over things"  I did have my urentic stent removed yesterday, and all was good there - so I am getting the results I need!  I am also on obinutuzumab maintenance plus, as you say, the premed steroid.  I Had such a hard time with  my legs I keep asking the medical team to reduce them, so this time they said they would reduce them by 50%  Could cope with the hyperactivity, but the side effect that Prednislone gave me was unprecedented  In my book!  I was not expecting that muscle inactivity.  But I kept walking everyday - and now almost great.  I will see how tomorrow's goes, and hope the muscle ache don't come back again!  It's been seven months now!! Other than that I really do not have anything to complain about!   Also may I ask if you are on any meds?  I am on antibiotic 3 times a week and an antiviral, antifungal tabs. every day.  Did you manage to go on holiday during maintenance? No that I wish to go abroad just yet, as I have read that the insurance companies classify maintenance as treatment. When I was on watch and wait - I had no trouble as I was not on any form of treatment.  Well keep well and keep going! 

Hi Glann, I'm not on any other medication at all just the pre-.meds on the day. I seem to remember that the antibiotics/antivirals,etc ended a few weeks after the actual O-CVP chemo.

I didn't have any watch and wait as my FL was found when I was diagnosed with breast cancer. I had no symptoms of lymphoma so was a bit of luck that it was discovered as it was already stage 4. I had surgery, chemo and then radiotherapy for the breast cancer and then straight onto O-CVP  chemo for the lymphoma. The maintenance really has been the easiest part. 

As for holiday insurance - I was quoted 1500.00 for travel insurance for ONE WEEK to Spain during maintenance as it is classed as treatment. Needless to say we've been holidaying in UK for the past couple of years. Looking forward to September when we're jetting off for a fortnight. I've still to organise my insurance for that but it will definitely be less than 1500.00! I've read a few posts on here as well as the Blood Cancer site with recommendations for insurance companies so will give them a try. 

I just took things one day at a time and do/did what the drs tell me. No point worrying about things that I've no control over.