Do I carry on with Maintenance ??

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.

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.

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. 

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

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.

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.