Do I carry on with Maintenance ??

FormerMember
FormerMember
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Hi All

I was diagnosed with a double wammy in December 2019 when admitted to hospital and diagnosed with COPD and whilst there went for a bone marrow biopsy (wonderful experience lol) and in the January was diagnosed with Stage IV Follicular Lymphoma but due to my COPD condition didn't start treatment until February  2020 and underwent quite aggressive O-CVP treatment weekly then 3 weekly finishing in July 2020 and due to start Maintenance in September 2020, I had one round of the maintenance treatment but my November 2020 session was cancelled and I have had no treatment since then.  The hospital have kept in touch with phone call but all face to face contact has been cancelled.  In one of the letters following the telephone call it states that the evidence for maintenance therapy in the front line setting although positive is comparatively weak and as such pausing the therapy at present does not pose a significant threat to my well being.

I am in a bit of a quandary as to understanding if the therapy is week, whether to continue with the maintenance.  Without this pause I would not have questioned any of it as I would not thought they would have gone along with the expense and the time of putting you on a two year treatment course if there was little value in it, not to mention the additional pumping of medication into your body.

Can anyone give me advice or their thoughts on this or if the same thing has happened to them.  My treatment is due to commence again on Monday and so far have not received the cancellation call, but that can happen up till 5 o'clock.

Thank you for any help you can give.

Bramhall

  • Hi  and welcome to the group. I had a totally different type of NHL and maintenance was not an option and indeed would make no difference to my type of cancer.

    There is a lot of debate about the effectiveness of the maintenance and indeed the new challenges as to how it would make you more open to the effects of COVID.

    Lets look for others in the same position to come along.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Bramhall, like you I was diagnosed with stage 4 follicular lymphoma, but in September 2020 and I have had 6 cycles of O-CHOP (very similar to O-CVP) and then 2 cycles of Obinutuzumab only. I'm awaiting my PET-CT scan. However, I have been told that if this shows complete remission, I will not be offered maintenance treatment. My consutant says that in this situation, the time curves to 1st relapse are very similar for maintenance and no maintenance. There is also the issue of remaining more immunosuppressed on maintenance, with Covid around. The guidelines do seem to have changed recently, with Covid. I struggled with this on hearing it, as I was expecting to have maintenance treatment no matter what, but I think I have to accept it and be philosophical. I need to wait and see what my scan shows, anyway. Let me know what happens with you.

  • FormerMember
    FormerMember in reply to Joy57

    Hi Joy57, Thanks for your response, I will ask my consultant on Monday what he thinks and let you know. I am unsure about how much the immune system is affected with the maintenance. My PET scan showed that my white cells had come back to an acceptable level although not complete remission. 

  • It takes six to nine months for the particular white B cells that the O drug (or R that I've had) kills off. And these cells are the ones that make antibodies so it's a judgement call as to the pros and cons. I did R-CHOP in 2018/19 with no maintenance afterwards and relapsed after a year. This time I'm doing R-Benda and my consultant is in no doubt that I should do maintenance this time. 

  • FormerMember
    FormerMember in reply to Joy57

    Hi Joy 57

    Well I saw one of the consultants yesterday and went through my concerns.  I am not sure what it means to have complete remission as my understanding is that it never goes away and FL is a terminal diagnosis, but hopefully will stay at an acceptable low level that doesn't need active treatment for a good number of years and this is my understanding of their term remission in relation to myself,  The maintenance treatment is to try and extend the gap between relapse and whilst there have been some positive results it is early days to calculate how beneficial in the long term it is, but as my consultant said, they would not offer this very expensive and time consuming treatment as it does take all day, if they did not think that there was any value in it. 

    My consultant also said that this was not the view of just the hospital this was under NICE guidelines and international viewpoints as well and I would have thought the more people who have the maintenance would be better for research.  I asked about the vaccine as well as I am due to have my second jab in April and was told to go ahead and have it, there would be some compromising of my immune system but as yet there is not enough information to confirm whether the vaccine is invalidated but there recommendation is to have the vaccine and to pick up the maintenance and to that end I am due to start my Obinutuzumab maintenance on Monday.

    I hope this helps, it does seem that we are in the hands of the consultants and each will have their own viewpoint.  I know there are different viewpoints between the consultants in the Haematology team I am under but they are all following the guidelines they have.

    Hope this helps, please message it I can be of any further help.

    Take care and stay safe.

    Bramhall

  • FormerMember
    FormerMember in reply to Londoner12

    Hi Londoner12

    As mentioned to Joy57 above, I think all the consultants have different views on this. My consultant felt that the Obinutuzumab which I had and will continue with has better results that the other drug that is used.  All we can do is be guided by our consultants as they know our individual needs and treatment and they will obviously only want what is best for us.

    We did discuss as a family whether to go with the maintenance (irrespective of COVID) or not but following the consultation yesterday we decided that if there was no value to it, it would not be offered.

    Good luck with your treatment, take care and stay safe.

    Bramhall

  • Thanks, the term 'complete remission' was my consultant's and I took it to mean, no activity on PET scan, as she said they don't have cellular markers in the blood to check for Minimal Residual Disease. I will question this again when I get my PET result. Hopefully this will be face to face, as I haven't seen a consultant since I was diagnosed in October. All consultations have been by phone since then.

  • Hi again Bramhall, could I ask which hospital your treatment is under? I'm trying to gather information on which hospitals are offering mainteanance treatment, in order to have a discussion with my consultant if/when she tells me that I can't have it. Many thanks.

  • FormerMember
    FormerMember in reply to Joy57

    Hi Joy57\  I had my maintenance yesterday with I am happy to say no ill effects.  I am at Castle Hill Haematology Department at Hull.  I don't have a particular consultant they seem to work as a team, which is the one thing that I find difficult as I would prefer to be able to see the same consultant each time.  

    I am not surprised that there are such various ideas on maintenance as I am still not sure in this current climate that the benefits of maintenance outweigh the risks of infection from COVID or indeed other general infections. I am now back on all meds, restricted to a degree on where I can go and I had planned to take up swimming to try and get some exercise and loose a bit of weight but told that the risk of infection is now higher so that is not going to happen now.

    I hope that things work out for you and you get the decision that you want.

  • Thanks Bramhall, that's really helpful. I am in Hampshire, so quite a long way away, but it helps to know what's on offer in other parts of the country. I can have more of an informed discussion with my consultant. My scan is next week, then I'll have a bone marrow biopsy (to compare with the pre-treatment one) then at some point a consultation which I really really hope will be face to face, so that I can have my husband with me.

    All the very best with your miantenance.