Are INTERIM PET-scans really prognostic in ADVANCED HL?

Hi Nick, welcome to the world of lymphoma research and the contradictory and confusing picture it paints. The are a number of HL studies I have come across that look at various aspects of treatment looking to see is one protocol better that the other, what may be the least toxic approach and how large are the differences in outcome. Hence the confusion when we lay people read them.

If someone had found the golden egg by now the picture would be much clearer, however what we do know is that ABVD is pretty effective as a firstling treatment and its toxicity is less than BEACOPP so that's why its still in use and the jury is still out on switching treatments at the 2nd cycle scan when you read the research. The other thing to consider is the context of the research and what were they looking at- the scope, again often it has a narrow scope looking at specifics. The papers that can give perspective are the ones that review a range of studies retrospectively to see what they tell the medical profession. 

I have not looked at the link, but what your figures are telling you is that most people respond well to treatment and the is only a small group who have challenging disease, this is similar with my type of NHL, DLBC where Algorithms have helped identify new subtypes and one new subtype that does not respond well to treatment, but the testing that could help inform treatment is years away. All from genomic profiling,  

Some consultants do keep up to date with research and what's classed as cutting edge thinking and others do the day job, some will entertain discussion with patients and again others don't, but worth having a discussion with the consultant once you know the outcome of the scan.

John  

Interesting thoughts John. Thank you.

This report is after years of study, by probably the most respected HL group in the world. They return very good figures. But yes the trade off is toxicity and later malignancies, though statistically worth the trade off?

Who knows, in 30 years time, the magic bullet may have been found to cure all cancers, though maybe that is wildly optimistic.

My son is one of those whose cancer is presumably very aggressive due to the very high LDH marker, which means it requires stronger treatment.

For those with advanced HL, the Positive-PET interim scan rate can be as high as 40% according to this report, but others have returned 25-30% Positive PET interim scans, so it is still a significant proportion of people not getting negative-PET scans from this sub-group with advanced HL.

Good morning Nick, this conversation brings back a number of memories from my 20 years on this journey....... this may end up a ramble as I am sitting in the back garden on a beautiful morning with a great cup of coffee.

My starting point were those first conversations 20 years back  “there is no cure........you will have to live with this..... we will do our best.....but this condition WILL kill you”...... with little or no information available apart from a very badly photocopied A4 info sheet

Over the early years Google grew and working in Further Education I had the opportunity to use this facility to look deeper........ only to totally confuse myself. To the point that I stopped doing any research as it was so depressing so we just lived life as best as we could within the limits that the condition allowed us.

I once went to the Scottish gathering of Dermatologists (I had a Skin Lymphoma) as my very respected Dermatology Consultants ‘show and tell’ ;) 

During the morning 80+ Dermatologists came into this hotel room to meet me. Only 3 or 4 hard ever come across my condition face to face so it was good to get their take on the future.

One of the youngest consultants did say that she was convinced that progress was being made in the area of my CTCL and was hopeful that I would live long enough to benefit from this ‘new treatment’. For some folks that would have sounded like “well that’s me gone” but I took it that there was hope out there.

A few years later my condition become very aggressive that is now over 6 years back.

So I started researching again as the power of Google had increased and so I searched for what this ‘new treatment’ was but could never find clear understandable answers, just a lot of research that could or could not relate to me as I did understand that not one of these conditions presentations were the same.

So very quickly came to understand that I had no idea as to where this would go...... but did come to realise that my/our energy had to be focused in getting through this and with this came that ‘got it’ moment that the best route was to trust my team.

Yes, we did keep them on their toes, but they were ‘on it’ and put the net out far and wide, combining the best minds who were working at the coal face in my condition to put a plan together that if it worked would help me to continue to live past the 30ish months I had been given.

It came as a shock that this ‘new treatment’ this golden bullet could well kill me anyway but the clock was running out.

2+ years ago I was told “you have no detectable cancer in your body...... enjoy life”

I went to see my original Consultant and he said “..... well I am supposed to be the expert in this.... but what do I know”

Sorry for this being long, but I just think it is important to take time to enjoy each day, to celebrate each new morning and let tomorrow take care of its self.

I have had years of missing these moments with my own family so I now invest as much as I can into my granddaughters and the rest of the family. 

I do trust that your team are ‘on it’ and I am sure that they are using the very best treatments out there fir how the condition is presenting and always remember there is other “what nexts” if required but you can not really control this part of the journey.

........now another cup of coffee.

Hi Mike

It is beautiful weather but as we all know we feel like we are in a prison.

I know he has only had 2 rounds of chemo, but I also understand that whilst some has gone, the fact that a new area has appeared is in effect grim. Primary Refractory cases are the worst prognosis. I guess that is exactly what he has. I'm not sure there is much for him, Stem cell never works well with high LDH cases.

It just feels like every turner we take, from diagnosis to treatment, we hit the small % who won't fair well.

I just don't think he has time or many options on his side, yet this German research for adults certainly states otherwise and totally contradicts that.

Thanks to  you and John for being there, as always (:-

Yes Nick, all we can do it trust that the next best thing is available. You final sentence encapsulate this as you use the word 'yet'.

So you all have to look for the best or next best route in this that has 'yet' to be put in place.

It is important not to use the word 'guess' always turn your 'guess' into some balanced view based on facts and the best folks for this are his team.

We are all staying with you through this.

Nick, what the research and our experiences should help you understand is that we are all unique and a stat of one, what we are trying to share with you is we have been where you are and for Mike its 20 years experience and me 10 years, seeking answers looking at what ifs and now with maturity, saying it makes little difference and changes nothing that will be. Focus on the here and now and where you can make a difference so for patients that's drink plenty and exercise as much as you can as a couple of examples. For family and carers its sit and watch feeling helpless at times not able to make a difference (thats how people tell us it feels) but you make a difference by being there listening and helping when its appropriate.

I have shared a number of times with hindsight I would have done some things different and keep things simple, only once treatment is finished will you have an answer.

I don't know how many research papers are out there that focus on paediatric treatment and specifically lymphoma but if they do they are more relevant to your son rather than the adult papers and as you have found very few compare apples with apples etc.

I know scans are unsettling times, you prepare for the worst and hope for the best but do try to wait to see what the results say as the could be lots of reasons and at this time the is no result, and which ever way it goes the whole community here will be supporting you

enjoy the sun while it lasts and may be do something special with your son no matter how small

John 

Hello Nick,

daughter was primary refractory, however it wasn't till I began to read up that I knew this......but her team did eventually find a treatment which fully worked. I guess we were fortunate in that her consultant (Professor John Radford at Manchester’s Christie Hospital) is one of the best in the UK. He often met up with international experts in world conferences, and was happy to put us in touch with Professor Andreas Engert in Cologne, one of the renowned experts there in Germany if we needed. 

If you need second opinions to ask your team to refer your sons case to specialists like this. 

Hugs xxx

Hi Nick,

I know you are going out of your mind with worry and that people telling you not to worry is unhelpful at best, but remember that until you have the scan results, you don't yet know that it will be positive.

It sounds like your son has been incredibly responsive to treatment, especially with that enormous node disappearing. Is it so all possible that this new node is swollen in response to an infection? Remember lymph nodes have a day job too! 

When does your son get the results?

Helen x 

Also, just to address your point about relapse rates being higher in negative interim scan patients; it could be because treatment was deescalated in those patients. They often do this to minimise toxicity, even though they know more people will relapse, it means that those who don't will be spared some of the risks of late effects.

Also, just to address your point about relapse rates being higher in negative interim scan patients; it could be because treatment was deescalated in those patients. They often do this to minimise toxicity, even though they know more people will relapse, it means that those who don't will be spared some of the risks of late effects.