Non hodgkins lymphoma

Firstly can I say I am sorry to hear that your Mum has NHL. I have also read your posts on another thread. You seem very angry and frustrated at both your Mums situation and treatment. I know a little bit about NHL because my Dad had it 2 years ago. I know that Retuximub is a brilliant drug but as it is new it is only licensed for NHL with spread (ie more than one site) but my Dad was lucky to be given it and it has put him into a stable remission (he was given it alongside 'r-chop'). If your Mum gets it she may find she goes into a remission (which means she gets some more time before the disease becomes active again). NHL has varying rates of cure and seems to be age - related as to how well people do - so the older you are, and the less fit you are - tends to mean you do less well (This information came from the standard information leaflet my Dad was given at diagnosis). Generally speaking if a primary has been treated and then returns (with any cancer not just NHL) it means that it is unlikely (not impossible) to be cured again - hence the worse prognosis for your Mum.  

I have read your thread and think that your Mum has been treated as she should, and in acordance with the guidelines - but she has an agressive form of NHL - and that is not anyones fault (including the team treating her - who despite your feelings, I can assure you will all be trying to treat her to the best of their abilities). Clinicians get frustrated too when they want to use newer drugs to treat primaries but their hands are tied by red tape and licenses - these generally get relaxed as confidence builds with new drugs but the wheels of bureaucracy turn slowly and in your case - not in time for your Mum. Unfortunately agressive cancers do often return, despite treatment as it is their nature. I myself am in the terminal stage of breast cancer (who five years ago was told I had a 2% chance of it returning!! WRONG) so I know how frustrating and upsetting this disease can be, (I am in my forties and a single parent of two teenage daughters) but I just keep taking the treatments on offer and am determined to fight on as long as possible.

I hope that your Mum sees good results with her new treatment, and I know it is difficult - but try to have some hope for her. People can, as I say have stable remissions even though their cancer has spread from the primary area. I wish both you and her strength and courage - but try to lose the anger if you can -it is not good for you. Jools x x

Thanks for the reply Jools.  I'd read a lot beforehand about rituximab and was indeed very angry that it wasn't recommended for the first stage.  I dread to ask the question whether your dad received it at stage I for fear that you might say yes.  

Did your dad have indolent or aggressive lymphoma?  It seems those with indolent fair better even though it isn't cureable (i.e. they seem to live longer than those with an aggressive form which again is frustrating because the latter is supposedly more cureable which gives you hope).  I think the word cure sets up false expectations which is why when those expectations aren't met people become more angry, upset and disappointed.   We were given the impression it was nothing much to worry about because it was in the very early stages and as such could be treated midly but as you say it seems to be the normal pattern of treatment I have to accept they have done the best for her and have not treated her any worse because of her age.  Having said that it's impossible to ignore the fact that treatments for NHL have moved very little over the years compared to other forms of cancer - is that because most people with NHL are elderly or is it because they're elderly they're given the diagnosis of NHL?  Sorry if that seems a bit paranoid but I can't help wondering!!  It doesn't help when our oncologist is constantly emphasising her age and saying I'm not ageist but ... which makes me wonder whether he is.  I've been reading that half the people diagnosed with NHL relapse within the first 5 years.  Is it any wonder when rituximab is withheld from the early stage?  It's dificult not to be angry and not to assume someone somewhere must be at fault.  We were told initially she would have 25 rounds of radiotherapy but when I said she was only having 3 cycles of radiotherapy and questioned whether 25 was too much they settled on 15 rounds.  I'm beginning to think if I hadn't opened my mouth she'd have been given a higher dose and she would now be cured.  Or if we hadn't been with her to begin with suggesting she's more frail than she is, they would have treated the condition more aggressively to start with?  I suppose a lot of it is about ifs buts and maybes.  Had she been given a higher dose and it had come back there'd I'd have questioned why she had been given so much as it is I'm wondering whether she was given too little - even someone on the helpline suggested that might be the case (i.e. too little treatment to start with).

The frustrating thing is that scientists can't seem to agree on the best course of action - some suggest radiotherapy alone is enough for lymphoma of the tonsil whereas others suggest chemotherapy and radiotherapy is the best option.  As we had the statistic of 60-70% chance of a cure with both waved under our nose we decided on that rather than the 30-40% cure rate with radiotherapy alone.  Little did we know that chemotherapy once used becomes less effective.  How many times can we go to the well on this one I wonder when we've already been denied radiotherapy because it has already been used? I'd feel a bit happier if we'd been informed better to begin with - about the statistics that were age relevant and not been given false hope about a cure.

We've been told there is an alternative - that of tablets which would keep it at bay but as soon as the tablets ran out the cancer would return.  Didn't get much more info than that because the oncologist  seemed to think they wouldn't work and chemo would be the best option (wish he'd been more forthright in offering an opinion the first time around - he might have recommended starting with radiotherapy alone). The worrying thing now is the risks to her health and the possibility of the cancer spreading even quicker with treatment as it seems to have done after the first round.  Maybe we're better just leaving it and hope the cancer doesn't spread as fast without the aggressive treatments offered by the health profession?  Because without the hope of a cure it does make me wonder what's the point in all the gruelling treatment when it could hasten the rate of the disease spreading.  

I have a feeling they tell everyone over a certain age that they only have stage 1 so they don't have to give them rituximab (after all there's only so many resources to go around and).  Then when the cancer comes back blame it on the aggressive disease rather than the inadequate treatment given in the first instance and people from lower socio-econoic backgrounds who can't afford to buy the drugs and/or don't think in advance this is possible are even easier to hoodwink..  Sorry still can't let go of this anger but how is it some people can get the treatment when others can't.  

I fully understand your frustrations.  It can certainly seem as if the system is working against rather than for the patient.   This, obviously, is not usually the case.   I don't know whether they treated your parent conservatively because the full force of R-CHOP is considered to be a dramatic form of treatment only suitable for those who are relatively young.    I've known several patients in their sixties receive this, but who were unable to cope with the therapy.   Doctors seem to be trained to treat dismiss our concerns in the belief that it's in our best interests to know as little as possible in such circumstances.   Personally, I'd always prefer the uncensored view of my health.

Anyway, none of this is of much use to you.   Please believe me when I say that the R-CHOP therapy is intensive and gruelling - I've just been through it!    I'm 45 so, possibly, was considered to be a good candidate for this.   Lymphoma, by its nature, is rarely localised to one area and as such is a bit of a bugger to treat.  

Take Care

Andrew

Apparently they treated her conservatively because it was confined to one tonsil and as such she was inelligible for R-CHOP.   (R-CHOP is apparently only licensed for stage II and beyond.  Now it has spread to the neck and is painful (which it wasn't before) so she has now been allowed to have Rituximab as well.  R-CHOP may be gruelling but she did seem to cope well with the CHOP (it was the radiotherapy that seemed to cause more problems).  I realise older people may have a host of other medical conditions to consider when being treated but, as has been proved today, they are able to adjust doses and add protective drugs accordingly.  But to deny people a potentially life saving drug merely because of their age is discrimination.  She has today received this extra drug (perhaps in too small a dose to be very effective - apparently she's been given a lower dose first time around to see how it goes).  I understand their dilemma but sometimes I wonder whether it's more to do with expense than risk assessment and/or red tape.  

Apparently rituximab is now "old hat".  The new treatment seems to be something called BEXXAR but again is in short supply and only recommended for those who have already relapsed after having R-CHOP (and probably excludes pensioners).  Oh for the day when there are less toxic and more effective forms of treatment (and ones available to everyone).  Even found myself looking at herbal remedies this morning!