Anyone with experience NOT having maintenance after R-CHOP ... (or the PETReA Trial)?

Hi Cecren. Fingers crossed for you for a long remission. X

Hi. I took some time to think about maintenance treatment after my rcvp as I wanted to visit my son in the US and was able to get travel insurance as wasn't on treatment I don't know if that would have been possible if on the maintenance. My consultant told me i had to start maintenance within 6 months of finishing chemo so this gave me time for my trip. In the end as i said i opted not to start more rounds of hospital visits.  Since then I had 3 monthly appts for a couple of years then 6 months then once a year for the last 3 years.  Blood test and a chat basically.  I was told that things arent usually picked up at routine appointments it goes on how you feel and told to ring in if i feel unwell.My blood tests have always been pretty much normal so not really an indicator for me.  I can and have spoken to the hospital haematology macmillan team and they are great and supportive.  My current health issues might be nothing to do with my lymphoma but always a good idea to get a check over. Fatigue is one of my big things over the last few years but I think i am very fortunate to have had a good length of time in remission.  Fingers crossed for next week.  I hope you get your appointment soon.  These things are very difficult with the covid situation at the moment and appointments and treatments being delayed.  

Thanks!   I hope you feel stronger soon.  Fatigue is grim, but I do find being outdoors a lot and trying to do a little bit more each week does help recharge the batteries over time.

Cecren

Thanks again Lynne.

Good to have an idea of how the checkups played out. 

Best of luck next week.

Jim

Hi everyone hope you're all well a bit p off with  my team  for cancelling my 10th  immune treatment because of covid  yet  I was able to have treatment during 1st  lockdown errr so rant over  stay safe  everyone 

This topic has just become relevant to me. I'm having my 6th cycle this week, of Obinutuzumab and CHOP (O-CHOP). I'll have 2 treatments of Obinutuzumab alone after that, then a PET-CT scan. I spoke to my consultant this morning. I was expecting to have 2-monthly Obinutuzumab after that as maintenance, in fact I'm sure that was what I was originally told. However, today she said that if my PET scan shows complete remission, then I won't have maintenance treatment. If it shows partial remission, it will be discussed then. I'm concerned to be left without maintenance or further scanning, as I'm one of those who had internal tumours, with no palpable lymph nodes or lumps, and my symptoms were vague (chest and abdominal discomfort). Everything that I've heard and read says that this condition is likely to recur in the future.

Hi thanks for good wishes. I saw consultant this week. He doesn't feel that my symptoms are indicative of lymphoma and after examining me said there was nothing palpable but this is deja vu from my original problems pre diagnosis. Anway he doesn't want me to have a ct as I have had 6 previously and has suggested a chest x-ray and an ultrasound for starters followed by ct if anything shows up.  He did say I could have a ct if that was what I wanted but as I had a scan at the end of 2019 due to feeling unwell which showed I was still in complete remission I have decided this is the best way forward but am still quite anxious.  It is reassuring to hear that others have no abnormal bloods or palpable nodes as I have at times been made to feel I am making a fuss about nothing as tests do not shout out, my original diagnosis was following  a ct scan and subsequent biopsy.

I had the xray while at the hospital and am waiting for ultrasound appointment now which will then be followed up by phone in a months time.  In the mean time I shall carry on with my walks and naps and trying to keep positive.  I was quite unerved sitting in the xray department for an hour it was so busy, everyone was masked and seats were spread out but even so its not a good place to be at the moment especially when I haven't even seen my  family and grandchildren for such a long time then sitting amongst strangers.

Best wishes to everyone who is struggling with their health along with this virus. Let's hope we at least get our vaccines in the near future.

Hi Granny60,

I don't think any of us on here are in the 'Making a Fuss about Nothing' category.  I also know that feeling of looking at everything that twinges or feels funny and thinking about recurrence.   

My consultant outlined to me what she would do if I had suspicious signs or symptoms and they were exactly what your consultant is doing for you.    They don't like to use CT type radiation or sparkly radioactive isotopes without really urgent reason because they carry their own risk for us.  A chest x ray needs less radiation than CT and ultrasound is very good these days, not just those fuzzy grey blobs they used to show.   My original lumps were checked using ultrasound and my GP and I knew the likely diagnosis as soon as they said they weren't cystic.  I was impressed anyway!   

The hospitals around here are separating types of patient, as well as they can.  But X ray departments are busy places in winter with falls and fractures and stuff.  I suppose all we can do is try to negotiate a car park wait or open a few windows... Good luck with your vaccine!   The appointments are not always easy and I know people who've had more than one appointment sent out.  A bit like waiting ages for a bus and a convoy of three arrive together.   Nobody around here (rural Scotland) has had any news yet, but we hope to hear by March.

Cecren

Thanks for your reply cecren.  My original diagnosis process was a nightmare of normal blood tests etc. Finally had an ultrasound which found a gallstone so all my symptoms were attributed to that. Long wait to see surgeon for cholecystectomy who ordered a ct which showed loads of enlarged lymph nodes so had surgery for gallbladder and biopsy which showed follicular lymphoma. The whole thing went on for nearly a year mostly with me feeling noone believed how unwell i felt so i do get anxious. 

It's reassuring to hear your consultant advises same tests. Obviously ultrasound must have improved. I do understand the radiation thing just past experience makes me feel nothing would show up without a ct pa. Appointment for ultrasound has just arrived in post for next Tuesday so not long to wait. 

No idea when I will get vaccine but probably sometime in March.  I am very grateful to have been seen and getting tests so promptly in this pandemic as I know lots of people are waiting for surgery etc.

Best wishes to everyone. X

Hi Joy57

Yes, I've gone back and forth about whether its best to have maintenance or not. I'd say 70% of various medical reports I've read recommend maintenance after initial R-CHOP treatment. But a distinction is made between Overall Survival (OS) and Progession Free Survival (PFS).

Overall Survival (How long you're likely to live given your type of lymphoma, age, etc.) is generally understood NOT to be affected by when you have maintenance. Progession Free Survival (the length of time you remain in remission) IS affected.

if you have maintenance (say, for 2 years) then the period of PFS is extended longer than if you don't have maintenance. But, you are also putting your body under the rigours of serious Rituximab chemistry (with reduction of immunity and possible other side-effects as a result) for two extra years. 

As I understand it, follicular lymphoma is easy-ish to treat (but certainly not much fun to undergo), but may very well pop up again in the future. It's just that sort of cancer. I'm starting to come round to the view that if I don't have maintenance, I'll probably need some more treatment in the future ... but maybe not for a few years. And when I DO need the treatment, my body has had two extra years to recuperate from the R-CHOP chemistry (by not having maintenance) and thereby will be more able to tolerate the new treatment.

Frankly, I'm not sure if I'm kidding myself or not. I'm speaking with my consultant next week, so hope to get a clearer idea of the advantages and disadvantages of the maintenance and non-maintenance pathways. 

What I do know is that there are recent and genuine, high-level health concerns by medical specialists about Ritux maintenance.