Hi all,
I am new to this forum, I have (T-Cell Histiocyte Rich) DLBCL diagnosed in October and currently undergoing Pola R-CHP. I have had four cycle so far. My 5th cycle has now been delayed twice due to me having severe neutropenia (0.4 neutrophil count in latest blood test), I am currently undergoing 5 days of Filgrastim in the hope that this builds up my neutrophils.
My haematologist has not exactly been forthcoming with information and the 5 minute phone call doesn't really give me the time to think about questions regarding the delay. I honestly felt well and expected my blood tests to be fine. My obvious concern is will this extended break give the cancer the chance to grow and spread again.
I would appreciate any advice/reassurance from anyone who has had similar experiences.
Thanks Andrew
Hi Andrew1970 and a warm welcome to this little corner of the Community.
I am Mike and I help out around our various Lymphoma groups.
I don’t have DLBCL but I have been on my Lymphoma journey for over 25.5 years first diagnosed way back in 1999 at 44…… with my rare (8 in a million) incurable but treatable type of slow growing Cutaneous T-Cell Non Hodgkin’s Lymphoma (CTCL).
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) very type of aggressive Peripheral T-Cell Non Hodgkin’s Lymphoma (PTCL-NOS) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Delays are expected and are built into the overall treatment rhythm and delays make no real difference to outcomes…… but yes to the length of treatment.
The cycle timeline, say every 3 weeks helps to schedule clinic/ward appointments for treatment.
The further into your cycles the chance of delays due to infections, low neutrophils and for me having to travel to see other clinical team in preparation for going into Stem Cell Transplants…… I had a 7 day then a 2 week delay over my 6 cycles of R-EPOCH… I have talk d with others who had every cycle delayed.
In reality the effects of the treatment on your growth areas spans more than the day(s) of the treatment……….. hence your low neneutrophils being the sign of the on going effects and the further you go into treatment there is a bigger accumulation of effects…… once you come to the end of your treatment your post treatment scan will not be done until about 4-6 weeks after your last treatment as any sooner the scans would pick up false results due to repents of the treatment working on your body,
As always, you chat this through with your clinical team as they are the best people to reassure you.
