Chemoman/Didee/Kermica – feel free to delete this if you don’t think it’s beneficial
Something Chemoman posted about helping the newbies made me think that, seeing as I'm not around as much as I used to be, and being the resident HL'er, I would just write a bit of a 101 that can be bumped as and when it needs to be.
As many of you will know, during my diagnosis and treatment I was an avid researcher about my disease so consider myself fairly knowledgeable on the subject. The aim of this thread is not to discuss chemo or treatment related issues (as these are shareable for all chemo's) but to discuss treatment protocols specific to Hodgkin’s and to discuss strategies in treating early favourable, early unfavourable and relapsed HD.
Please note, I'm not a doctor and you should ALWAYS discuss your individual case with your oncologist or haematologist. All I am doing is providing recommendations and considerations based upon extensive research and gold standard protocols. I wasn’t entirely sure whether I should write this for fear of people thinking I’m operating above my station but having seen MANY wrong treatment choices made on various boards I thought it best to collate the info I acquired.
Hodgkins, across all stages, is one of the most curable cancers in the world. Because of this 90% plus cure rate and long life span of cured patients (most are under 35) more recent research has focussed, with the aid of PET scans, in making the treatment less toxic. Because of this, there are currently differing thoughts on the optimal treatment for each stage.
Early Favourable disease is anything stage 1-11a without risk factors. Risk factors would include elevated ESR/LDH, Bulky Disease, certain levels of white blood cells occurring and B symptoms such as night sweats or significant weight loss. The recent gold standard care for this stage (by the GSHG – the leading Hodgkins study group in the world) is currently 2 cycles of ABVD followed by 30gy radiation. In some instances this is upped to 4 cycles of ABVD plus 30gy radiation (as in my case).
Early Unfavourable disease is anything stage 1-11 with associated risk factors as described above. The standard of care was previously 4-8 cycles of ABVD plus 30gy radiation. Whilst that figure results in tumour control and potential cure for 80% plus people a dose intensified chemo of 2 cycles Esc Beacopp and and 2 cycles of ABVD SIGNIFICANTLY improved tumour control and took the 5 year progression free survival to closer to 90%. Obviously this is a more toxic regimen but secondary malignancies and treatment related mortality was not increased suggestive of short term toxicity only.
Late Stage Disease
Late stage Disease traditionally relapsed in 30% plus of patients treated with ABVD. The alternative standard of care is 4 Esc BEACOPP plus 4 BEACOPP and this is resulting in 5 year progression free survival rates of 85% bringing Late Stage Disease patients more in line with cure rates of other stages. It MUST be noted however that there is significantly more toxicity in this volume of BEACOPP and it is not recommend in patients over 60 years or patients with a poor performance status.
Relapse and Refractory Disease
How to treat a relapse of Hodgkins disease depends on a number of factors such as length of relapse, relapse in previously irradiated site and presence of B-Symptoms and/or bulky disease. In most cases, the longer you relapse outside of a treatment course the better your chances of success. Likewise, Refractory disease (considered progression during a treatment course or within 3 months of therapy) carries the worst prognosis and certain questions come in to play around cure v management where there is no straight forward answer or protocol.
Relapse after 1 year or more
In patients who relapse outside of 5 years your case is a unique one and dependant on your presentation and initial treatment modality you may not require a Stem Cell Transplant (SCT). For all other patients SCT is the generally accepted standard of care. This will be preceded by salvage and conditioning chemo regimens and your own cells are used. Relapse after 1 year carries a good prognosis of about 70% being cured by SCT.
Relapse in months 3-12
In this cohort, the regimen is exactly as above but carries a slightly worse prognosis with cure rates around 50%.
Refractory is the more challenging but cure rates have been improving based upon the introduction and early detection of progression by PET scanning. Auto SCT is still the standard of care but has a cure rate of less than 30%. Allo SCT (from a donor) has long disappointed with high mortality and low cure rates but does offer a benefit of a host v graft affect meaning that some patients who are unable to get in to remission can be cured, although management of your disease through novel trials and treatments such as SGN35 are the chosen route by many. In saying that, there are some novel approaches happening to Allo and in carefully selected patients cures are being achieved for 70% plus - https://ash.confex.com/ash/2011/webp...aper39060.html
SCT – What you should know
The single most important factor of success in Hodgkins Specific SCT is having a clean PET scan prior to your SCT. There are barely any documented success cases of SCT working after positive PET so demand a PET and have patience if you’re not yet in remission. There are many regimens out there and there are many cases of people going through multiple regimens before moving on to SCT.
I hope this is helpful for those HL’ers on here. The reason I have produced this is that not every doctor is a HL specialist and it can be easy to be grouped in to a general ‘lymphoma’ category where things differ. Also, this is an international site and not all of these standard of cares will be known globally. Arm yourself with us much info as you can, be your own advocate – it could save your life!