Diagnosed with Follicular Non Hodgkin's Lymphoma December last year Treated with obinutuzumab/bendamustine: for three months although I felt much better PET scan showed increased Lymphoma activity particularly in bones treatment terminated Enrolled on REFRACT trial Lenalidomide Epcoritamab for another three months and felt much better after three months crashed and burned Lymphoma still progressing and blood samples deteriorated. in between all that a had shingles really badly pneumonia (in hospital for two weeks) and lost most of the motion in my right arm neurolymphomatosis which miraculously returned The neurosurgeon said was unprecedented. Had two failed bone biopsies (Lymphoma appears in my bones no lymph gland activity) that revealed no Lymphoma as it seemed difficult to co-ordinate Pet scan and Biopsy which are better close together.
With the failed REFRACT trial my consultant redoubled her efforts and arranged PET scan (fifth this year) and two biopsies (One spine One Hip) on the same day, this time returned result which is now high grade which I understand is a good and bad thing as its more virulent but is treatable where if it was still Follicular I'd almost run out of options.
So week and a half after biopsy I'm in hospital being pumped with steroids and various drips and injections to prepare me and my bad blood for R-Pola-CHP C1 chemo.
Avid watcher of MyChart with nearly 50 samples so far this year.........isn't blood complicated? Consultant points out one problem and you get your head round that then another one crops up then with chemo the whole thing goes to pot.
So I guess I'll be leaving this Forum for one covering my now condition
Hi again hernehillphil and sorry to hear about your challenges….. FL transforming (Lymphoma Transformation) into a High-grade non-Hodgkin lymphoma…… often DLBCL is not that unusual but as you say very treatable.
Your FL is always going to be around but hopefully fast asleep.
Although my journey is different I had both a low grade and a high grade T-Cell NHLs and had to be treated for both at the same time.
There have been a number of folks in the group who have had R-Pola-CHP…….. and I have talked with many more people who have navigated the exact same journey as you on the various Support Platforms… where I also volunteer.
Hi hernehillphil with low-grade NHLs like FL it can often take a few different treatments to achieve long term remission…. Many folks achieve this with R-Pola-CHP C1 also being treated for DLBCL.
Over my first 14-15 years with my low-grade NHL I only ever achieved partial-remission with the longest period between treatments being 9 months but my last treatment Oct 2015 has put both my T-Cell NHLs to sleep and I am getting on with life.
Good morning hernehillphil from a very wild Highlsnds….. it’s been blowing a hoolie all night.
I know from my long complicated journey the challenges of getting your head round living with and being treated for both a Low-grade and a High-grade non-Hodgkin lymphoma…… basically at the same time is all about getting clear information, talking with people with first hand experience, taking control of the space between the ears…… and trusting the system to do its job
Back in Oct 2013 when my second aggressive T-Cell appeared I went straight to stage 4 with significant bone marrow involvement but a plan was put together….
It was made more complicated due to both my T-Cell NHLs being very rare and both had to be treated at the same time….. it was a challenging 2 years (Oct 2013 to Oct 2015) but worth every moment (See my story)
Our Lymphoma groups are on the slow side at the moment but if you are in the UK you may want to check out…… Lymphoma Action the UKs main Lymphoma charity as their profile across the UK has risen significantly over the past 10 years…… a good example is in the information you received from your medical team being produced by LA.
The Lymphoma Action website has lots of very good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
All the links I use are taken directly from their website and I have volunteered with them about as long as I have with Macmillan……
You may want to widen your support and information base by checking them out as they run various Support Platforms…
I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……
Their Closed FB group alone has over 6800 members and unfortunately you would most likely bump into me on there also ;)
They also have a great Buddy Service where you can be linked up with someone who has walked the exact same treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
((hugs))
