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

  • 37 replies
  • 16 subscribers
  • 8378 views

This is related to my query over on the NHL Group.

This past Friday, after completing my 6th R-CHOP chemo session for follicular lymphoma, my consultant told me that my follow-up PET scan showed NO TRACE of lymphoma. So I am in remission. Hurrah!

It has also been suggested that I now follow the PETRaE Trial. Half the people on this with PET results like mine, carry on with the usual maintenance of having Rituximab every 2 months for about 2 years. The other half -- me included -- have NO TREATMENT. (The trial 'tests' how accurate PET scanning is ... with the idea that continuing chemotherapy with maintenance may be doing the body unnecessary harm when it's already shown to be gone.)  More about PETReA Trial

I'm a bit worried about not having the further treatment as expected -- surely more chemo would ensure the disease is dead. On the other hand, I sure wouldn't miss the regular Rituximab 'poisoning' every two months for two years. Then again, I'd like to put any possible further experience of lymphoma treatment as far into the future as possible by dealing with it now. But there is also a part of me that feels the least I can do for the medical profession and specialists that have helped me so much to get over lymphoma ... is take part in the trial.

I'd love to hear from anyone who, for whatever reason, hasn't continued with the Rituximab maintenance and about their experiences. Or from anyone who has taken part in the PETReA Trial.

  • I would like to hear about this also. I just finished my rchop and doc mentioned the maintenance; not trial I’m in Florida. 

  • Hiya Livingafloat,

    Congratulations on achieving remission!   Such a great feeling...

    I'm also not having maintenance.  Mine was a grade 4 lymphoma, mostly bone disease.  Unlike yourself, I had rituximab and bendamustine treatment and was wildly allergic to the ritux, so they had to dope me up with steroids and heavy doses of antihistamines before every treatment.  You can imagine this would be a disadvantage having regular doses of the same stuff for a further 2 years.  I was rather pleased not to have it, even though I get the odd twinge of worry in case my risks of recurrence are greater.  I don't actually know of any studies looking at the side effects and effectiveness of maintenance, but I think your trial sounds like one I'd like to read more about.  Thanks for the link!  I will follow it and read more.  I'm not in any trials, but I'd be willing.

    It is a dilemma for us as patients.  I'm in UK and have a checkup due next week.  As far as I can tell, I'm still disease free after 18 months and feeling great.   Every day is a small celebration!

    Cecren

  • Hi Line1

    There's a brief overview of Rituximab maintenance with links over at Lymphoma Action here.

    And there's a quite technical NHS document about Rituximab maintenance here that weighs up the evidence for its use, with input from medical professionals, patients and the drug manufacturer.

    Well Cecren, that sounds wonderful ... 18 months and feeling great! Good luck with the checkup.

    I'm not allergic to the Rituximab, but I did feel nauseous (but not sick) for the first 12 days during every R-CHOP cycle.

  • i have NH follicular lymphoma ,after 6 months rituximab and bendamustin had 3 maintenance retuximab ,was to be for 2years  but was told as my scan shows clear at moment the maintenance will stop due to risk of getting covid in hospital. last one was end febuary .dont think it will ever restart now , just have blood test every few months. not able to do things i used to ,i miss the life i had ,now with covid also feels like been excelerated into old age ,after being indoors for 9 months alone since march just started to go for short walks , helps a bit.emotions yo yo, ,i felt unsupported by hospital all through treatment .

  • I didn't have maintenance rituximab. My post treatment scan was clear. A year later I'm back on chemo after relapsing, and with a stem cell transplant in sight. I asked the consultant if I'd had maintenance might I not have relapsed. He said as I relapsed so quickly it probably wouldn't have made any difference. But that was just a guess. It wasn't my choice not to have maintenance, it was mentioned and then someone decided no.

  • Hi Pixieperson

    Sorry to hear you feel so unplugged: partly from having your maintenance paused ... and this Covid-19 malarky. With any luck the vaccine will reach us in the next few months and we can get out and mix with society a bit more freely.

    During my conversation with my consultant about follow-up treatment, she did mention part of the reason to do the PETReA trial without maintenance was because of Covid dangers. I immediately responded that as I'd been travelling in to Reading for the R-CHOP throughout -- via cab in and out, with everyone masked-up; and I've been isolating for 6 months -- I didn't feel there was any great risk to me or hospital staff. I'd hate to think doing the trial was more for the convenience of avoiding Covid than actually doing the best thing for my health. Especially if we're on the verge of widespread vaccination.

  • The vaccine might be another reason not to have the rituximab because you will likely not mount a good resonse to the vaccine while on it.

  • Hi. I had rcvp in 2015 finishing 6 rounds with good final scan result showing no trace of tumours. I was offered 2 years of rituximab maintenance but after researching it all I decided not to have it and just get on with life and not having to go for treatment for a further 2 years. My consultant was in full agreement with my decision.  I was still tumour free at the end of 2019 but have recently had symptoms and am awaiting a consultant appointment and hopefully a scan.  My enlarged lymph nodes were in my abdomen and chest so no obvious ones which had made diagnosis very long winded and difficult now, as nothing to feel externally.  I have had periods over the last 5 years when I have felt very tired and unwell and wonder if this is the lymphoma waxing and waning.  If I have relapsed now i still feel i made the right decision about the maintenance but it is a very personal decision and not an easy one. I figured at 60 I would rather get on with my early retirement and face the possibility of more treatment when I had done a few more of the things I had retired to do.  Maintenance is no guarantee of delaying relapse as I have read where people still had an early relapse.  I hope this helps. We are all in a difficult place especially with covid.  Please contact me if you would like more info. 

    Hugs to all Lynne

  • Hello Lynne,

    That's very much how I felt about follow up for so long, as well as being seriously allergic to rituximab.  Like you, I realise relapse can happen and frequent scans are NOT a good idea because of the radiation, let alone the costs to the NHS.   So, uncertainty but realistic uncertainty, I think.   The research evidence isn't clear yet, but I know my immunity is still rubbish and I need to take care in the pandemic.  I'm relieved that I can manage to stay home: many can't.

    I guess when you've had a diagnosis like ours, you tend to suspect every symptom, every little lump.   I shall be delighted to have 5 years with no relapse!  Mine's 18 months so far and it's all good.

    Congratulations and many more clear years in future!

    Cecren

  • Hi Lynne

    Thanks for sharing your experience. That's really good to hear that you've been free of the disease for the last five years. I wish you luck with the consultation and scan if needed.

    I too had affected lymph nodes behind my stomach and in my chest. (I now know why my 'Fast / 5-2 diet' didn't seem to be working after a year -- the lymphatic mass was pushing out my belly!). I also had none of the 'normal' symptoms. It was only when I could barely breathe (pleural effusion) and hospitalised that it was picked up.

    I'm still waiting on a phone appointment with a consultant next month -- to get more information about what kind of checks there are if I don't have maintenance, and whether an option would be to start maintenance in half a year when Covid 'settles down'. 

    What type of checks did you have during the years after your initial 6 rounds? Are there regular blood tests for checking this? Or some kind of check-up? I'm not sure I'd know I had relapsed otherwise.