Hello and O-CVP

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Hi all.

My name is Paola and I'm a 55 years old psychologist and psychotherapist. After a 4-month diagnostic journey during pandemic times, I was diagnosed with low grade follicular lymphoma stage 3 (no letters attached ;) at the end of March 2021.  I was started on obinutuzumab-bendamustine in April but ended up in hospital with neutropenic sepsis on two occasions in the space of 10 days. So, my medical team switched my regimen to O-CVP but I was given very little information on the efficacy and side effect of this treatment. Although I'm a very low maintenance patient, I'm not happy at all with the input and level of support I'm receiving from my medical team and I'm often left to my own devices to find out stuff about treatment. So far, I've had two cycles of O-CVP and, besides some dental issues brought up by the chemo, I feel this therapy is working as I'm totally pain free and able to walk and cycle again. I'm due to have a PET scan next week and really hope it confirms the improvements I'm experiencing.

Basically, I wonder if there's anyone out there willing to share their past and/or current experiences of O-CVP.

Thank you so much for reading my post and best wishes to all.

'When going through hell, keep walking'

  • Hi  and welcome to this small corner of the community.

    There are a number who have had O-CVP so let’s look for them to pick up on your post.

    You can also use the search tool Mag right near the top and put in O-CVP have a look at the threads and hit reply and see if they are still looking in or have moved on with life.

    I have a totally different type of incurable NHL and a rather different treatment journey (see my profile) but from talking with people on the site it is obvious that we could line up 10 people with the same condition and on the same treatment and get 10 different journeys.

    However it does sound like things are going well with you.

    Always around to help out or chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Highlander/Mike and thanks for your prompt reply, availability and tips.

    Best wishes

  • Hi and welcome though sorry to see you having to join us, like Mike I had a different type of lymphoma to you mine was DLBC which is an aggressive type. Re your treatment for many years RCVP was the first line treatment for fnhl and those with more challenging disease would get a stronger regime called RCHOP which is what I had. In the last 3 or 4 years the R -rituximab has been replaced with O - obintinuzumab as it has a smaller risk to someone having a reaction to it. 

    B & R then became a standard treatment and recently that became O & B which is what you had, either way there are a number of treatment regimes available for FNHL as and when needed.

    Hopefully your new plan will do the job and you will be in remission for a number of years and hope you see an improvement in the relation ship with your team, are you being treated in the UK?

    John 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Hi Paola, I've recently been treated with O-CHOP for stage 4 follicular lymphoma (see my profile) at the age of 61, fit and active. After 6 cycles, and 2 more of O alone, I am in complete metabolic remission and on maintenance treatment with O. My team have been great, I can email or call my nurse specialist and get a rapid reply.

    I hope you can keep up your walking and cycling through your treatment, it really helps. I have dusted off my old bike and managed to do some short rides, and have taken up tennis as a beginner. I walked throughout treatment, and have tried to restart running, but with less success so far! 

    I hope your treatment and scans go well, and let us know how you are. Incidentally, I was initially going to have O-bendamustine but my consultant decided it was too immunosuppressant with Covid around, and changed to O-CHOP.

  • Thanks johnr for clarifications on the O-CVP regimen. Also, I found reading your profile very encouraging (you had a tough ride indeed) and I'm now full of hope that my lymphoma will eventually go into remission.

    I'm being treated in London but prefer not to disclose the details of the NHS Trust providing the service.

    The relationship with my medical team is not that straightforward and - put it down to covid-19 and the austerity cuts before corona - my nurse specialist and the random haematologist I see every three weeks rush me through every review meeting that never lasts longer than 30 minutes. Communication with my part-time specialist nurse (who is overworked btw) is mainly through email and even if they are very responsive, I don't get much advice around managing and coping with chemo side effects.

    I also had some problems with the chemo nurses who sometimes do not have the time to go through your clinical file and end up making clinically unsafe decisions and drug errors. But this is a different issue that I have already addressed and hopefully resolved.

    I'll keep my fingers crossed and see what happens with the PET/CT scan next week.

    Thanks again for you post.

     "When going through hell, keep walking"

  • Hi Pablita!

    Bendamustine was my poison too.  The stuff is very effective.  It cleared my stage 4 bone marrow lymphoma after 6 treatments and I'm still disease free now at 2 years.  I hope your PET scan is equally satisfactory!

    The sepsis events sound grim and it's well known that this drug flattens your immune system.  After 18 months, my neutrophils are finally back, but my lymphocytes are still low after 2 years.  So, like you, I've done low immunity in a pandemic. I had a couple of infections, including a really big shingles event, but I don't mind lockdowns because I live in rural Scotland and the neighbourhood is very friendly.  I can spend most days out of doors.  I still don't regret the Bendamustine treatment because lots of transplant patients and friends on long term chemo will never have normal immunity.  I'm hoping to get enough for an effective vaccination response, maybe think about a return to work  as a volunteer.

    The pressures on clinical staff across the NHS are still not being handled well, IMO.  I've more than 40 years nursing experience and like you, I'm keenly aware of what's going on around me.  I have found the Macmillan site and forums like this one essential during and since treatment - it's the key component you need as a patient, but can't get through research papers or hard pressed specialist teams.  My team are there when I really need them.  I can ring and get advice or a quick checkup either in my local Small City Hospital or Covid Central City Hospital.  Both are there when I'm worried about possible infections and I've had 3 admissions to Covid Central City Hospital for IV antibiotics and antivirals.   I feel safe.

    Best wishes for those scans!

    Cecren